I had a dermatologist appointment a little while ago. It was par for the course for me anyway. The doctors office is in Lewistown which is about a half hour away. I used the Yahoo Maps/Directions link on the Geisinger website for directions. It was a bust as those directions led me to where the office was next to Lewistown Hospital before they moved about SEVEN YEARS AGO.  My GPS unit couldn't find the address in its database either. I was fortunate as there were some nurses taking a break outside and one was kind enough to write down directions for me. I left in plenty of time to make my appointment so I wasn't late.

I ended up waiting 45 minutes to see the dermatologist. I don't mind waiting and the first thing the doctor did was apologize for running late. I stood up to greet him and extended my hand for a handshake but he hesitated. I told him not too worry as I used the antibacterial hand wash that he had just used as he entered the room.  I won't let anybody slide anymore on saying hello or shaking hands when I meet them, especially for the first time.

As it turns out, the growth that was on my back was no longer present. The doctor doubted it was there and I made him look at my last PCP notes to verify that it was there as it was the original purpose for my appointment.  I did ask him about another growth on my chest and he was spot on with his information regarding this growth and my past history with surgery and procedures that I've had to deal with these types of growths as my grandfather had these also.

He stated that I had atypical moles on my back and that I should get checked yearly for melanomas. He also prescribed some medication that could prevent future growths.

He mentioned that a new dermatologist will be hired shortly and will be probably be stationed at Scenery Park or Grays Woods which are minutes from my house. He seemed concerned that he would be losing some patients that didn't want to travel the 1/2 hour to see him. I thought he was confident in his abilities and communicated quite well explaining everything in easy to understand terms. Long story short, I have another appointment in two months to see how I'm progressing on the medication he prescribed and I don't mind traveling to see him.

Neurologist Update

I decided to try the medication the neurologist had offered to help with my dizziness and balance issues. A friend of mine read my blog and told me they were diagnosed with the same seratonin deficiency and have been on medication for over 10 years with excellent results. I have to contact the neurologist in two weeks with an update.  I've only been on the medication for 5 days and while I've had no more episodes of dizziness, there are some side effects of this medication but I'll wait and see how my body adjusts and ask a few questions when I contact the neurologist.  

Miscellaneous

I don't have any doctors appointments scheduled until July so I probably won't update this blog until then and I only see me authoring a few more entries anyway.  

Friend Update 

One of my good friends also has islet cell. We were chatting a few weeks ago as it was time for his 6 month CT Scan.  I asked him how the scan results were while we were playing golf and he said good as it was two days after the scan and the doctor had told him that he would call if anything of concern was discovered. He hadn't received a phone call at that point and thought everything was ok.  He was about 5 days away from his 5 year anniversary of having a whipple procedure.  It turns out he had some progression and is now going to go for an octreoscan to help evaluate his current status. I offered my support and told him I would go with him if needed. He also knows how much of a researcher I am and I offered my computer and /or skills if he wanted to research any treatment options his oncologist had mentioned. He called his surgeon at Johns Hopkins who returned his call and answered some of his questions.

I can tell you when a person is diagnosed with cancer, your world suddenly stops and you immediately think of your own mortality. Then you have to pull yourself together and deal with the reality of the situation.

One is usually under enough financial burden if you have a family, a house with a mortgage, bills to pay and maybe have insurance that doesn't quite pay for drugs that can run $8,000 per month. If you are the bread winner, you need to take time off from work for surgery and recovery. If you are a caregiver, you also might have to cut down on your work schedule to take care of your loved one. One thing that doesn't stop is the bills keep piling up.

I just wanted to share the story of one family who just experienced such a situation.  This gentleman was diagnosed with stage 1 grade 2 kidney cancer that metastisied within a year and a half. He has a blog named The Enemy Returns and can be accessed at the following address: http://theenemyreturns.wordpress.com/ 

He is quite the battler going through the variety of treatments he as gone through.  I would also say he is quite the inspiration.

He recently posted on his blog and also the ACOR KIDNEY support list that he was on the verge of losing his house since his family lost part of their income since he had to stop working full time for treatment and recovery and his wife also had to cut down on working to help take care of him and their family.

They fell behind in their mortgage payments and were trying unsuccessfully to restructure their mortgage to help them through this rough stretch until they could return to "normal". They were unsuccessful and their house was scheduled to go up for auction and they faced HOMELESSNESS. 

Within 24 hours of posting his situation on the ACOR list, he received a call from his mortgage company's case manager who promptly told him that he sure does have allot of friends. Many members from the ACOR list contacted the mortgage company to voice their disapproval of how they were handling the situation. The end result was his mortgage is now restructured. His family does not face homelessness now.

TWO THUMBS UP for the family, his supporters and the mortgage company who changed their position and helped this family.
Unfortunately, I don't think many of these types of situations end this way but I'm glad it seems to be working out for this family.

I had an appointment this past Monday with a neurologist to get an opinion on my light headaches, dizziness and balance issues.

He started the exam by preforming a few diagnostic tests to check my mental status, sensory system, deep tendon reflexes, my coordination and gait. I thought I passed with flying colors.

We then went over the Brain MRI. This guy does it the right way. He pulled my study up on the screen and went over each series and explained what he was looking at and what he was looking for. I enjoyed learning a few things as it helps me understand but I find studies of my abdomen much more interesting. Everything looked normal including my inner ear and there were no signs of strokes or anything bad. I'd say that was a good thing since I'm sure there was a slight chance of mets which I was never concerned about since it was a long shot but I know my doctors had to exclude that diagnosis because of my past medical history and symptoms.  

I received a diagnosis of migraine headaches. As far as receiving diagnosis, it sure does beat having a surgeon ask me what 189.0 is and receiving a letter in the mail confirming a diagnosis that I didn't receive in person to begin with.  I thought that was odd since I've only had light and I mean light headaches and I never had to take an aspirin or anything. He explained that throbbing headaches are not necessary for migraine headaches and described a bunch of symptoms associated with migraine headaches. He mentioned chemical imbalance and abnormal seratonin levels.  I asked if there were any serum tests to confirm seratonin levels and he said those tests are bascially only done at the NIH.

Its a basically grin and bear it type situation but he did offer a course of medications that I could try to try and alleviate the symptoms or possibly help eliminate them. I hate taking medication of any kind so I took a lets wait and see how this works out. All I have to do is send him a note and we'll try the medications for a short term trial to see if they work.

I'm learning to live with the symptoms. Just the other day I mowed my yard and was dizzy for two days afterward. The ringing in my ears comes and goes and its really just a nuisance. I don't give up easily and want to get more active. What did I do? I joined a local golf club the day after my appointment and I plan on playing golf amost every day. If I get dizzy, so what. If I stink, so what. I don't give up easily and I'm not knocking on heavens door yet so live goes on.

Overall, this appointment was a positive experience. The doctor and his staff were professional and pleasant to work with. 

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My brothers wedding was last Friday. I traveled to New York on Wednesday and managed to play golf with him and a couple of his friends Thursday morning at 6:50 am.  I think this is the last time I ever play golf at 6:50 am. It was cold and windy but I don't often get the chance to play with my brother so I didn't mind one bit, besides, he treated me.

What can one say about a wedding other than it was a great occasion where two people share their love and devotion with friends and family and take that final step of making it official.  The bride was absolutely stunning and the groom handsome (I had to say that since he is my brother and most people think we are twins which I just don't see).

The reception was held at Marina Del Rey which has a well deserved reputation for food and atmosphere. The cocktail hour alone had enough food which could have been considered a three course meal. The dinner was excellent. The band was pretty good and everyone had a great time.

It was a long day as the (men) bridal party met at 1:30 pm for some lunch and liquid refreshments. The wedding service was at 4:00 pm and the reception was from 7:00 pm until 1:00 am. I didn't get home until 2:00 am.

Congratulations Big Brother Michael and Little Sister Teresa!!!!!!

I'm leaving for New York today. My brothers wedding is this Friday. I was in New York last week for the wedding rehearsal at the church and for the rehearsal dinner.

I haven't been to New York in quite a while and haven't  been to the neighborhood my brother currently lives in for even a longer stretch of time. They call the area "Little Ireland". It is approximately 5 miles north and almost a carbon copy of the neighborhood we grew up in some 25 years earlier. There are irish specialty stores and of course, a slew of drinking and eating establishments to relax and unwind in.

The wedding party is big and I got a preview of how this upcoming weekend will unfold. Currently, there are over 275 guests for the wedding and it will be like a reunion of sorts. Even though my brother and I are only one year apart in age, we ran in different circles when we were teenagers. Still,  everyone knew everybody else. I knew all but 1 of the ushers for the wedding party and it was pleasant seeing them after all these years.

Last weekend I stayed at my mothers house. This weekend I've been offered the use of a friends apartment in Bronxville that is about a 10 minute walk from my mothers house.  I hadn't visited my mother in quite a while as she has always either come out to Pennsylvania or Florida. I joked with her that the last time I came to visit her that the electronic mirrors on my car were stolen when I parked right outside her house. I had and have a Town Car and Town Car's are used for private taxis as well as gypsy cabs so my mirrors probably ended up on a taxi cab.

I'm coming in early so that I can play golf with my brother on Thursday. I still can't believe we have a 6:50 am tee time. I'm up early anyway but to play at 6:50 am is ridiculous and it will probably be 40 degrees. I don't often get to play golf with my brother so this one time won't kill me. We also have to go pick up the tuxedos. I'm also looking forward to going out for some good chinese food (as promised by my mother) as there is no such thing as good chinese food in State College or Florida.

The one thing I'm looking forward to is getting back to a normal routine after this weekend. I've been traveling, have had house guests (I never saw two people buy and eat so much junk food and of course, I was weak and I think I threw out at least 5 bags of  unopened munchies when they left)  for almost a month and finally my brothers wedding.

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I had a Brain MRI done last week.  This was done since I am experiencing intermittent light headaches, dizziness, balance issues and ringing in the ears.

I had the MRI performed locally at the Geisinger Grays Woods facility. This facility is only 15 minutes away from my house and it sure beats going to Danville which is almost 2 hours away. 

As always, the technicians were pleasant and easy to work with. I experienced no anxiety as I don't mind getting scanned. This model of MRI was a little different than the model in Danville as there was a little more "head room". By "head room", I mean it isn't as snug a fit as the unit in Danville which has only about 2 inches of clearance from my face to the top of the unit. This unit didn't have that coffin feel as I like to keep my eyes open. The study took approximately 45 minutes as they injected contrast halfway through. I didn't even feel the needle being inserted into my arm for the contrast.

I guess the staff got reamed out as this is the first time I had to fill out a patient release form to get a copy of the study along with the radiologists report.

I would say it was good news as the opinion of the radiologist who read my study reported no abnormalities.  I had the report within 24 hours of the study and my PCP's office called the day after I got the report to tell me my study was normal. I was actually impressed since it was the first time in a long time that they actually got something right.

I have an appointment with a neurologist coming up so we'll see what happens after that appointment.

One good thing is that I now have a baseline for future scans as I probably  have almost everything covered, head, brain, bone, chest, abdomen and all the reports are pretty good.  The only upcoming scans should be to check the post operative changes (pseudocyst), which I should have had already but thats another story and the regularly scheduled study to check the progress of my renal cryoablation.

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I recently went on another cruise. This time the destination was the Panama Canal. I went with my best friend Bruce and his wife Gracie. Please see the cheesy pictures. The video is of the ship in the other set of locks. Locomotives are used to pull the ships through the locks.

I highly recommend anyone going on a cruise to browse the site www.cruisecritic.com. You can find information regarding anything and everything.

This was a 10 day cruise and when I first boarded the ship, 10 days seems like an eternity. As with every vacation, an eternity usually turns into "where the hell as the time gone".

As soon as I got settled into my room, I knew this cruise had the potential to be the cruise from hell. There was a memo in the room stating that the ship was just sanitized because of an outbreak of norvovirus.

Norovirus infection presents as vomiting and diarrhea and usually occurs in large outbreaks. It is usually transmitted  via contaminated food or water or by direct person-to-person contact or by contact with contaminated objects.  Not a pleasant situation when there are 2,400 people in an enclosed setting complete with buffet lines, sharing salt and pepper shakers in the dining rooms, public restrooms, the casino, etc......

The ship was on "red alert" as passengers were not allowed to serve themselves in the buffet lines. That was not a problem for me as I avoid buffets since I really don't like watching people rub their runny nose with their hand and then serve themselves in a buffet. In the dining room, there were no salt and pepper shakers on the tables.  Bread baskets and butter were also missing from the table.  All public restroom doors were open as they didn't want anyone touching the door knobs. The red alert lasted for the first three days and even though it was a hindrance, everyone knew it was necessary. Overall, I'd say they did a good job as from what they announced, only 3 or 4 people came down with norvovirus this particular cruise.

Bad Luck. The second night out was the first of two formal nights. We made reservations at one of the premium restaurants. The theme was Italian and the food was average at best.  After the meal, Bruce started to feel ill. He thought it was food poisoning as a piece or two of seafood didn't taste right. Little did he know that he had contacted the norvovirus. He called the ships doctors the following morning after experiencing the not so pleasant symptoms. One of the nurses was in his room within 15 minutes and he was told he contacted the virus and they gave him an injection and he was then quarantined in the room for the next 48 hours. His room was cleaned 3 times a day by a hazmat team, complete gear including hazmat suits and masks. They also laundered all the clothes in the room gratis. It took about 4 days before Bruce recovered enough to be able to leave the room and ship.

The misfortune continued for Gracie as by the end of the cruise, she was under the weather herself as she had contacted strep throat and something else and still hasn't recovered some 10+ days later. I was fortunate and did not become ill.

Its a Small World. We arrived at the Panama Canal one morning at 6:00 am. The staff did a great job educating the passengers on the story of how the canals were built. There was a documentary that ran on the televisions that was very informative. There are a series of locks that the ship has to go through to make it to Gatun Lake. There are two sets of locks and another cruise ship was about 50 yards away from us. All of a sudden, I hear someone from the other cruise ship yelling my name.  You got it, one of my friends was on the other ship. We ended up taking pictures of each other.

The World isn't Big Enough. One on the activities I enjoy is sharing a table in the dining room. You get to meet and chat with a wide variety of people living in different parts of the world and it makes dining interesting. However, one can't enjoy the company of everyone and I ran into one of those people during dinner one night.  He happened to be a doctor who does research which includes an area of interest regarding the endocrine system and the pancreas. I didn't discuss any particulars of my case but did mention that I had islet cell. Out of the blue he asked me if I thought I knew more than my doctors. I thought great, I get enough arrogant bullshit from doctors I do see and I'm on vacation and this one is just as bad. I  ignored his question and asked him if he thought all doctors were good. He thought for a second and said no. I told him I thought the same thing and told him that even though I can't judge their skills like he can, all I can do is ask questions so that I can make an informed decision. Needless to say, the conversation ended quickly. No harm, no foul but the world just doesn't seem big enough sometimes.

Entertainment. I was looking forward to this vacation since I wanted to play some more No Limit Texas Holdem. I brought a certain amount of cash to play with and over the course of being in the casino every night, the entertainment only ended up costing me $40.  I ended up winning on the slots, breaking even on Texas Holdem and loosing in Blackjack although I only lost two $20 entry fees into tournaments.

I like calculating the odds in Texas Holdem and reading the people. This trip makes only the second time I've ever played Holdem and while I find it interesting reading people and trying to figure out what they have, I only have an interest in doing it while I'm on vacation.  Its amazing how many people will fold when you raise them $25. I know I could not get away with that playing with real experienced players.

Out of the blue one night, the $5 blackjack table was blocked off with "Do Not Cross this Line" tape. The hazmat team came into the casino and cleaned the table. The men's lavatory just outside the casino also got blocked off. I guess somebody else became ill.

The shows were ok as the best show was the talent show put on by the cruise.

The food was ok and I didn't mind or am not embarrassed to order multiple entrées to try new things. One night the entire table was buzzing over a soup that was on the menu. Each person was scared to order it. I said what the heck and ordered it. The name of the soup was "Essence of Seafood". It was a cold soup and let me tell you, it was essence and it was the gamiest tasting soup I ever had. One spoonful and that was it. Needless to say, nobody else ordered it after that.

I didn't do many excursions off the ship because Bruce was sick but I did do kayaking in Costa Rica. They called it Costa Rica's version of the Amazon. Well it was 2 1/2 hours of paddling in 90 degree heat with high humidity. I had no problem doing the physical part but I saw more wildlife on Amazon.com as all we saw were a few birds and lizards. Everyone wanted to see crocodiles.  Next time, zip lining through the trees at 75 feet above the rain forest floor sounds more inviting and was excellent as reported by other passengers.

One thing you really notice is how lucky we have it in the United States. Items we take for granted are out of reach for most of the people.

I have come to enjoy cruising and am already looking into booking my next cruise. I'm thinking Alaska will probably be next but Hawaii and Italy look inviting also.

The Island Princess was smaller than the Crown Princess since it was built specifically to travel through the Panama Canal. There were about 2,400 passengers compared to 3,400 passengers.

My brother is getting married next week (more in another entry) and he is going through the canal on his honeymoon and ending up in San Francisco. It will be his first cruise and while he wanted to know everything, my future sister-in-law didn't want to know anything.

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I recently had another round of scheduled appointments with my cardiologist and primary care physician.

First up was my appointment with my cardiologist. I really haven't been feeling one hundred percent for the past three weeks. I've been feeling light, constant pressure in my head, I guess you could call it a light headache. I've also been experiencing some dizziness and have had some balance issues. I had dizziness and balance issues for a few weeks after a cruise that I went on last November and don't know if the issues are related. I haven't been playing much golf since it isn't too fun when you can't keep your balance and are playing like crap. I also wanted to concentrate on my workouts at the gym since I consider my workouts more important than playing golf.

I've been looking forward to the appointment with my cardiologist for a while now. My cardiologist is very approachable and I wanted to discuss some issues with him. I feel that I can discuss any issue with him and not get fed bullshit. I'll get his honest opinion and I respect his viewpoints. It helps getting somebody else's perspective on issues since I know I can get tunnel vision sometimes. We ended up exchanging ideas on a few different issues.

My cardiologist ended up ordering a ct scan of my head for which I've included two images from the study.  He was able to get precertification from my insurance company and I had the scan within an hour of his order. This was a Friday and my appointment with my PCP was Monday. I don't mind getting scanned and besides, my deductible period is from April 1^st through the end of March so this wasn't going to cost me a dime and I knew if my PCP was going to order a study, it wouldn't get done before the end of March and it would cost me a few bucks so why not get a freebie. I was happy to find out there was nothing obvious and I received a normal report although some would argue that I have nothing inside my head.

I then had my appointment with my PCP. They changed my routine with lab work this time around. For every prior appointment, they have ordered my labs and I've gotten them done beforehand. I had lab work ordered by my oncologist for chromogranin A serum levels for which the result was well within normal limits. Chromogranin A is used as a marker used to monitor patients who have neuroendocrine tumors. When I asked about labs ordered by my PCP, I was told none were on order. It wasn't a big deal but it sucks fasting for 12 hours and then having to do it again.

I showed my PCP my blood glucose levels for the past week and he ended up increasing the amount of Lantus (long acting insulin) and prescribing Novalog, which is short acting insulin that I will take before meals.

We also discussed my light headaches, dizziness and balance issues. He believes it may be an inner ear problem and ordered a brain MRI and referred me to a neurologist. I also started experiencing ringing in the ears which sucks but it isn't too hard to ignore. I say that in the short term and hope it is only a short term symptom.

Its been a very frustrating year and a half. I haven't particularly enjoyed dealing with a bunch of egomanical medical professionals who have no clue in how to treat people like people. It has been clearly obvious that they overestimate their own abilities and underestimate the patient. They have been clinically excellent and I love my results but I don't believe for one second that the ends justify the means.  I know many are judged by their results but  people should be treated like people. Many of the issues I've encountered could have been completely avoided if people acted professionally or treated me like they said they were going to. I will also say that its been a real pleasure dealing with 99% of the medical professionals. I know its not an easy job when dealing with people and I give them credit and respect for their efforts. They're efforts do make a difference.

In a previous entry, Opposite Approaches, I mentioned that I received a prescription for test strips when I asked for and specifically requested a script for a “Bayer Glucose Meter”. I don't know how much clearer I could have been, but I digress. I had also sent in my blood glucose readings with that message. It was the second week in a row I sent in my readings which I was instructed to do after my last consult.  I had never received a comment back regarding my numbers and I sent a message in asking why I never received a comment back regarding those numbers and also asked for an explanation on why the Novalog wasn't prescribed two months earlier when my numbers were comparable. We had previously discussed the possibility of Novalog to help control my diabetes. I already knew the nurse that handled my communication dropped the ball regarding the scripts and I was basically asking why I never received a comment back on the blood glucose numbers. I already knew the answer, I knew there was an error in communication but I also know that I am ultimately responsible for making sure my inquiries are answered. 

I sure did open a can of worms which is what I was hoping for. The nurse on the team called me on the phone since she sensed I had concerns based on my message she had triaged. I thought it was obvious since I used the words "red flags" in my message. She shared her opinion of how important the role of a primary care physician regarding patient care is, especially a patient with my conditions. She offered a possible solution that if I was not satisfied, that they could recommend another primary care physician. I shared my concern regarding the lack of communication two months before. While I appreciate the overall efforts of this particular nurse for the past year, the only thing she accomplished in the next few minutes was raise more concern on my part. She fed me every excuse in the book why my message two months before regarding my glucose readings went unanswered. She first took the position that it wasn't her who fielded the original message. I have no control who receives my communication. I am sending correspondence to my doctor and I have no control of who answers. I know inquiries are triaged by the staff . From this patients point of view, I have to trust the doctor and the staff. She then started giving me excuse after excuse regarding the miscommunication. While it was obvious that she was protecting her co-worker, the only statement she didn't make was that a mistake was made by the nurse who handled my inquiry. I was using this question as a measuring device to see if my trust level would rise with the team. I was hoping I would have heard, Yes Kevin, a mistake was made and we'll try to make sure this doesn't happen again. If I hear that, its end of story and no longer an issue.  I know that I'm responsible and would never assign blame to a nurse who originally dropped the ball. I made a poor decision not to follow up when I didn't receive a comment back since I knew my numbers weren't good.

I actually have no issues with any medical opinions given by my primary care physician. I know its a team approach and  I also have to trust the team which is where I'm having doubts. I know I'm getting his best effort and I can easily accept the outcome of our relationship. I've realized over the past year that I could have used them a little more when I've run into issues elsewhere. I want to be sure that I can trust them but my trust seems to be dwindling with each interaction with the team. The team has had trouble executing what I would call simple tasks and have acted in a way in what I would call inappropriate a couple of times.

While I appreciate the reference that the surgeon I am seeing is highly respected, they can't keep their mouths shut and leave it at that. They have to add derogatory comments to their opinion. While I could care less who they are taking about, the fact that they would talk out of school to an client regarding co-workers is a pet peeve of mine that I do not appreciate and consider unprofessional. I also don't appreciate fielding comments that I could perceive as too personal in nature that could only  have been learned from reading my medical record. I value my privacy and while I have to give them the benefit of the doubt since I don't know for sure the reason behind the comment, it is still very disturbing.

Then we have errors that I believe should never have happened. Its really not the individual errors or bullshit comments that concern me, its the quantity of them.
 
I still have trouble believing what happened when I asked for a referral for the gastroenterologist at Hopkins. I was handed an order for an upper gi from the nurse and I immediately pointed out that this was not a referral. The nurse told me that it was just a printout from a different screen and that it was ok. I saw it was a loosing battle and asked for another referral two days later which I received. I know filling out paperwork for insurance purposes isn't the most desirable task but it is a necessary evil. I know it would have been “tough shit Kevin” when the insurance company denies the claim for a procedure that didn't have the proper referral and I'm stuck with an enormous medical bill. The other asinine part of this issue is that I was treated like a thief by the staff that takes care of the claims at the office. I got the runaround from the insurance company and nurse when I noticed that the original order for the upper gi had been submitted as a claim and paid for by my insurance company. She did not believe me that the procedure wasn't performed until she actually opened up the order on the system and read a comment in the order that said the procedure was incorrectly ordered and not performed. Once she read that, she changed her toon real quick and agreed to reverse the claim.

Then we have my recent CT Thorax study that was performed to follow up on an enlarged pretracheal node as a result of a study that was performed at Johns Hopkins. I first had to alert the staff that I needed certain labs ordered since protocol dictate those labs be done within the last 30 days since I will be receiving contrast material. Protocol also dictates that I receive those same labs two days after since I take a certain medication that is stopped because of the contrast. I don't mind assisting but it gets ridiculous that I have to remind them a second time to order labs so that I could restart my medication. A bonus is receiving a call from the staff giving me the results of the study. I'm told my kidneys are ok and that is it. No mention of the actual reason for the study which is the first line item mentioned on the radiologists report.

I guess the kicker is agreeing to come in an talk to my PCP regarding my issues. I received voice mail from a member of the staff asking me to call in to set up an appointment with my PCP. The message states to call in and ask for her specifically and that she would assist me in setting up an appointment. I called in and left a message for her since she was unavailable. I receive an electronic message back that I could have talked to anyone to set up an appointment and that I should call the main number to setup an appointment and that my PCP would like to see me within a month if possible. I guess I misunderstood her message because my mind reading capabilities aren't working at the moment. When you say call in and state that I should ask for you, thats what I do. I sent a message back to her thanking her for her efforts and that I'll call the main number.

I know our goals are the same but its getting to be ridiculous. I know from my career experience that relationships are sometimes volatile but I just don't know if this relationship is worth the effort.  I realize that errors are made and that everyone is human. I also realize that its not an easy job for a staff that size to care for a large number of patients. I also realize that I'm not the only patient. I know I have to take an active part in my care. My original intention was to come in and have a face to face with my PCP and to ask for his help.   All I could ask for is everyones best effort. I don't think that is happening and I don't think my expectations are unrealistic. I don't think health care should be this difficult. I really don't know if changing providers would solve the problem or just change the cast of characters. Its seems to me to be a pretty easy decision to make but I still want to take some time to weigh all the issues.

On a lighter note, I've become a big fan of the television show House. I think Hugh Laurie does an excellent job portraying his character. I just love the interactions between the characters.

I'm leaving today for my cruise through the Panama Canal. I'm probably not too bright for getting on a cruise ship when I'm having balance issues but what the heck.

I recently attended a monthly meeting of my local kidney cancer support group. I'd missed a few meetings since I was traveling but was pleasantly (not that having cancer is pleasant but you get my meaning) surprised that the group has grown in size and  I met three new faces.

I continue to be amazed by the strength shown by the members. I happen to be the only member at stage 1 while most are stage 3 and 4.  One member was kind enough to share their experience of having a lung lesion resected.  This member had the procedure done two weeks ago and was looking to be in pretty good shape to me. Most patients who have lobectomies done with a foot long incision, a chest crack and usually take months to recover. This member had a video-assisted thorascopic surgery.  This procedure has been around for approximately  10 years but not many surgeons are trained in this technique. It just goes to show that patients have to do their research to know what procedures are available and ask, ask , ask questions to see if their provider is trained in that specialty. Its a sad truth but many patients don't take the time to research or to ask the questions needed to be asked in order to make an informed decision.

Another member shared their experience of being in a clinical trial. This clinical trial was to test a new contrast agent specifically designed to light up clear cell carcinoma during a pet scan. As I understand it, pet scans are not FDA approved for renal cell carcinoma so its tough to get insurance approval for whats considered an experimental procedure. The only positive uptake for the pet scan was limited to their kidney. This member showed up for the meeting and was scheduled for a nephrectomy the next morning. Everyone wished them the best possible outcome.

The group has too much experience in treatment options. One member just finished their second round of high dose IL-2 treatments.  Other members have experienced  recurrence and metastasis (lung, brain and bone). It is just an amazing group of people as well as their advocates.

Miscellaneous 

I'm starting to get back into golf. I had the pleasure of playing recently in a tournament. I'm 44, my playing partner was 66 and we got our clocks cleaned by an 82 and 83 year old. These two were the most annoying pair I've ever played against. I mean that in a good way. I swear one had the flexibility of Jack LaLane, had a sweet looking swing and could hit the ball a ton and it was obvious that he was a talent 40+ years ago an the other couldn't hit it far but he was straight and consistent.  It was like the tortoise and the hare. I could out drive them by 75 yards but all they did was hit it straight and play consistently.  Of course, the gamesmanship going back and forth was interesting as well, nothing nasty, just enough to make the match very interesting. IT WAS THE BEST TIME I HAD ON A GOLF COURSE SINCE MY JOURNEY STARTED. I've gone from a 9 to a 19 in that time but I think its time to get out and practice again. I guess I'm getting competitive again since my only pleasure derived by playing golf was just being out with my friends.  My priority has always been to go the gym and workout. Now I'm making the point of playing  and practicing more. I even went out to a local golf store and got my swing analyzed. I down over 10 miles per hour in swing speed and as a result, I'm over a club shorter. I know I'll eventually get more flexibility back but it was an excuse to get fitted for another set of golf clubs. I now have four sets and am definitely a club ho.

I booked another cruise, this time through the Panama Canal. I'm going with my best friend Bruce and his wife Grace. I'm not a gambler but I like playing the odds and Texas Hold EM. I think I'll be spending more time in the casino.  I gained two pounds from my last cruise which wasn't bad considering what I had eaten. The only issues I didn't enjoy from my last cruise was the balance and minor buzzing in my head that I had experienced for a few weeks after the cruise.  

I seem to be doing ok even though my blood sugar numbers are inconsistent. I recently had friends over to play cards, served dinner and munchies. After an evening like that, my blood sugar reading the next morning is usually around 275. That morning it was 117. My diet is pretty consistent for breakfast and lunch but my numbers aren't.  We'll see what happens with my labs in March.
 
All in all I'm doing pretty well.

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I recently enjoyed an evening out with some good friends. It is what I would call our second annual dinner meeting in what I hope will turn out to be a long lasting tradition. My friend Don and his wife Jenny were in town and we met for dinner at a local restaurant. I met Don and Jenny via my blog. Don was diagnosed with renal cell carcinoma approximately the same time I was.

We keep in touch via email and share the occasional phone call but its always nice to see them in person and catch up on the happenings in each of our lives. Don and Jenny haven't seen me with a beard and didn't recognize me at first because of it.

We reminisced about our experiences and Don asked me a very intriguing question. He asked how I dealt with my conditions. This is where Don and I have opposite approaches. I purposely didn't answer since I respect his position on this issue.

Don, please stop reading here.

I'm an information junkie, pure and simple. The more information I have regarding my condition, the easier it is for me understand what is happening to me or what could happen to me down the road . I don't like surprises and not being aware of what could happen regarding my conditions is an issue that I find unacceptable. I also like to make informed decisions so I research and any issue I don't understand, I will ask my provider to evaluate for me.

When I'm going to have a procedure, I research, research, research. I like to know the possible complications and I calculate the odds of each type of complication by reading published papers on the procedure and then doing the math. If my memory serves me correctly, I calculated a 2.2% chance of having a pseudocyst or a collection of fluid after my distal pancreatectomy.

I research my conditions just as thoroughly. For my renal cell carcinoma, I know the percentages regarding recurrence or metastasis for someone with my staging. I know the most likely time frames for those events and what areas of the body are most common places for metastasis. I also know that the surveillance strategies for patients with my staging usually ends in 5 years. Thats another issue in itself but it has to do with the high percentage of no recurrence or no metastases and resources that would be used in providing surveillance over the course of a lifetime for a staging that has only a 5 percent chance of returning. By using the Internet, its not to hard to find people with my staging who have experienced recurrence or metastases as many as 15+ years after initial treatment. One just has to put it in proper perspective, knowing about 15 patients in that 5% bracket, out of tens of thousands with the same staging is a statistical probability. Yeah, I know it sucks being in that 5% bracket and I hope I don't end up joining them but I'm not paralyzed by the fact that it is a possibility.

Information regarding islet cell is allot harder to come by. It is a rarer condition and there are not many studies on the subject. I posted a comment on the Pancreas Blog at Johns Hopkins in response to an article published by my surgeon. In his response, he used the word cure as a descriptor for my case. I believe the word cure is used too loosely when it relates to cancer and surgical outcomes. The word cure is very misleading when taken out of context. I believe the word curative would be more appropriate term. Most patients will hear the word cure and think they are at no further risk of disease. While it may be true in some cases, I know it isn't true regarding my islet cell tumor. I would consider my surgery curative in the sense that my tumor was resected and I had the best possible result. Most islet cell tumors that are non-functional like mine are not diagnosed until they become large and cause symptoms by pressing against other organs in the abdomen. Non-functional islet cell tumors commonly present with metastases to the liver and the 5 year survival rate for non-functional islet cell tumors is approximately 50%. What is considered a prognostic factor is tumor size. That magic number seems to be 4 cm. While there is no clear cut rule, bad things usually happen when the tumor exceeds 4 cm in size and in most cases, patients are still asymptomatic at that point. This is where my case is not considered a normal presentation since my tumor was an incidental finding, only 9 mm and I have no evidence of metastases. I also know there is a possibility of recurrence or metastases. From a study published from researchers at Massachusetts General, there were 3 patients who had benign islet cell tumors (including non-functional) resected that where smaller than 2 cm that experienced a recurrence or metastases. The cohort was extremely small and basically gives me the conclusion that even a small benign islet cell tumor is unpredictable. This study makes the use of the word cure misleading and probably inappropriate when taken out of context.

While I'm not a statistic, I'd say that I'm in the best position possible for the conditions that I have. I'm fortunate to be in the position that I am but this position has its good and bad points. A good point is that I'm in good shape. Being in good shape could also be perceived as having its bad points. One perception as driven home by books on the subject as well as from support groups is that when one is diagnosed with renal cell carcinoma, one should seek an oncologist who is experienced and considered an expert in treating renal cell carcinoma. The reality of the situation is that I'm in good shape and my staging doesn't warrant a consult from an expert.

Some patients stick their heads in the ground and don't want to know anything. Some would be happy just knowing the percentages as given to them by their providers. I like to know as much as I can and know the possibilities of my condition. Thats how I deal and can live with my conditions. I'm not in denial and I accept the fact that I'm human and have the maladies that I have and I choose to keep on living. This viewpoint was driven home to me by my first urologist. I'll play the cards I'm dealt and that is all I can do. I believe I've given myself the best opportunity to be in the best position I could be in. I've chosen surgeons that have given me the best opportunity for a positive outcome and I've been fortunate that I seem to be experiencing the best possible outcome for each procedure.

In a previous entry, I stated that I seem to be a magnet for shit happening. I had a good laugh today. I had requested two prescriptions from my PCP. One was for my insulin and the other was for a Blood Glucose Monitoring System. I recently lost one of my monitoring systems while I was traveling and wanted to replace it. The manufacturer I happen to use has a program that will let me replace the unit free of cost if I present a manufacturers coupon, which I have, along with a prescription for the unit. I asked for those prescriptions. I received them today, one for for insulin and the other was for test strips for that particular monitoring system. Am I missing something here or is this payback for some misdeed I've committed in the past? The only good thing is that I'm not taking it too seriously anymore. I went to Walmart and purchased a system.

Health Care - Perception or Reality, Either way Shit Happens

Pardon my french, but Shit Happens seems to be an appropriate title for this entry into my blog. I believe it is an appropriate metaphor for most of the issues I've encountered over the past year. While many would like to believe the world of health care mirrors television shows like Marcus Welby, the reality is much different in this patients point of view. You can call this a retrospective view of my experiences.

I don't know how to really phrase it but I would have to say that my journey into the world of health care is nothing short of a rude awakening.

I'm going to keep it simple and break it down into a few categories.

How to pick a Provider.

In my case, my conditions that have needed intervention have been clear cut and straightforward. I didn't have to deal with symptoms that could indicate a variety of medical conditions.

I myself have gone through a transformation when it comes to how I deal with my own health. I've gone from having blind trust in my providers to the complete opposite, trust no one until they earn it. I research as much as I can to lessen the odds of making an uninformed choice. 

I now view my relationships with my providers as partnerships. I'm the top dog and will make my own decisions and I'll do whatever I believe is necessary to be able to make an informed decision. I have to live with the result which is why I'm the top dog and believe I have to take that type of responsibility. I'll research my condition to the best of my ability and ask questions that I believe need to be evaluated in order to make that informed decision.

I've never really had a serious illness and when I did have an issue that needed intervention, I always had my mother as a guide. She is an operating room nurse and is way better qualified (if there is such a thing) to evaluate a provider because she sees them in action. She knew who was good and I know her choices were always based on clinical ability.

I'm now an adult and have to make my own decisions.

I have no clue on how to gauge a providers skills. I research their education, evaluate the reputations of institutions where they may have worked and most importantly the experience they have with my condition and their results in treating that condition. By using the internet, it isn't too difficult too follow their careers and figure out what organizations they are involved in, what areas of interests they have in regards to papers they may have had published and the relationships, if any, of the staff and how they may have been recruited to be on that particular staff. It also isn't too difficult to figure out what companies back their research with grants. If I have the opportunity to ask another health professional an opinion on a provider, I'll ask and evaluate the statements based on what was said and what was not said. I really don't take input from other patients since I believe my model for a provider is different from other patients but I do recognize that if many patients are satisfied with the results from being treated by a particular provider, then I'm interested in researching that provider. From there, its all interaction, instinct and then trust. Its all about lessening the odds of making a bad decision. Even if you make a good decision, as I have learned, you can still end up in a bad relationship and thats just the way it is because shit happens.

Another issue I evaluate is bedside manner. I look at bedside manner as the ability to communicate and exchange information so that I have the information I need  to make an informed decision and/or am up to date on my medical status. Sure, its nice to exchange pleasantries with your provider and we all want to have the warm fuzzies but for me, it comes down to information exchange.

Then we have the intangibles. My provider can't do everything by themselves and they have to have an infrastructure in place to support them. That includes staff and a technology platform to handle and organize all the data on each patient and the ability recall that data quickly to assist in treatment as well as having the ability to offer a vehicle to communicate with patients is a manner consistent with the world we live in today, most namely the internet and electronic communication. They also need the ability to use that technology in a way that the pros outweigh the cons.

How do I rate the partnership?

There is only one way to rate the partnership and that is the bottom line. If I achieve the best possible outcome, I'm satisfied but that doesn't necessarily mean I'm going to continue that partnership.
 
There really is nothing common about "common sense". Everyone has their own sense of what is correct and what isn't. The same goes for "common decency" but there should be less of a gap in each persons definition of common decency since after all, we all should treat each other the way we would want to be treated but it doesn't always work that way.

I always take the time to reflect on or analyze the situations I've experienced  for the sole purpose of learning on how to improve any deficiency if I have to go through that situation a second time. I'm a firm believer that everyone continues to learn not matter how much experience they have. I know I'm not perfect and don't like to make the same error twice. I've learned plenty over the past year and my views have changed accordingly. Am I correct? I don't know.

Health Insurance

Lets face it, your health insurance basically determines what providers you have access to. I don't kid myself and no matter how you look at it, it is still a business. In its simplest form, you can bet there are cost/benefit analysis for every office consult or type of diagnostic test and standards are based on the results of that research.  Its driven by cost and what benefits the majority rather than the minority.  

I happen to belong to Geisinger HMO. I think they do an above average job in providing the environment and resources to give me the best care available. There may have been times that I didn't think that but in retrospect, they do a great job and I am totally satisfied with my bottom line and the quality of providers I can choose from.

Monday Morning Quarterback

I've never met a group of people with more confidence in their own abilities than doctors. I'd say that is a definite prerequisite for the job, especially if they are a surgeon. I know I want to be treated by someone who has plenty of confidence in their own ability. I know I don't want to hear "I think I can do it". This is where a gray area comes into play. What some people will interpret as confidence, others will interpret as ego or arrogance. Either way, there is plenty of posturing and political correctness going on. One has to be able to interpret and evaluate a statement and be able to read between the lines.   I know I don't take any statement for granted. One of my providers took all my studies that were on CD and told me he was sending them down to the radiology department to be read. I thought to myself, bull, if they needed to do that, I'm in the wrong place. I knew it was a jedi mind trick and I checked with radiology for the reports and there were none which meant they wern't sent down to be read. I usually do'n't miss a trick. I also realize that patients are often underestimated in their ability to comprehend their situation. I've been able to use that to my advantage as I've been able to get information or get questions answered because of it. One of my golfing buddies was a hospital administrator. This particular hospital started asking patients to rate their satisfaction with their doctors. The comment made by most of the doctors when told of this satisfaction survey was that they believe the patients should just be satisfied they agreed to see them. Is this true? I'm sure there is some truth to it but  I would hope it isn't the norm.

I know I'm one arrogant son of a bitch with tons of confidence when it comes to my career in information technology. There is also another thing I know about myself, my shit stinks when  I make a mistake and I learn from it and move on. The one caveat between information technology and medicine is that in medicine, people are involved and when peoples feelings are involved, especially when they are dealing with an illness such as cancer, shit happens.

It's only my own observation on my own experiences but I learned real quickly that doctors won't or don't acknowledge mistakes. One thing for sure is that its bad for the ego to admit an error. They are working on peoples bodies and the stakes are high.  I don't even know if mistake is the correct word but I learned real quickly when my first urologist told me that he didn't care if I went back to Pennsylvania or not. I know he thought I challenged his credentials when I had asked a question. When I went back and explained to him that I wasn't challenging his credentials and to ask him exactly what he meant, he stated that what he meant was that he didn't mind if I went for a second opinion.  I thought wow, great rationalization on your part but your explanation didn't do bupkis for me. I did what I had to do to get answers about my condition and sought treatment elsewhere. There have been other situations I've experienced or read about and you'll either get a rationalization, get fed generalizations or you'll end up getting an explanation short or an acknowledgment of an error because there is one thing probably drilled into physicians by legal counsel and that is to never admit to a mistake or wrongdoing since it may be used in a malpractice suit.  

I look at my own experiences in a different light now than I did when they happened to me. You can call it learning from my own experiences or my own rationalization of events so that I can live with it, but one thing is for sure, I'm thrilled with my bottom line. I haven't run into a provider yet that has had bad clinical skills as defined by my ability to be satisfied with the outcome of such relationship.

I value my partnership with Dr. Rukstalis.  I didn't pick his name out of a hat when I was looking for a surgeon to treat my kidney cancer.  I looked at the institutions in my HMO that I had access to and could most likely provide me with a favorable outcome,  namely Geisinger and Johns Hopkins. I then looked at the providers available to me. Even though my relationship with my first urologist wasn't the best, I still valued his clinical skills because I had done the research and when he mentioned my possible treatment options, he mentioned cryoablation and nephrectomy. You better believe I realized that partial nephrectomy was left out for a reason. I did my research on cryoablation and realized all the research and sucess Dr. Rukstalis had put into making cryoablation a viable option for kidney cancer patients. You better believe I wanted the best surgeon available to handle my case and when I called to make an appointment at Geisinger, I was given two choices and I chose Dr. Rukstalis. Our relationship from my point of view hasn't always been smooth but I'm thrilled that I have two functioning kidneys and my prognosis is good. I've always looked at  issues in a "big picture" type manner. I see Dr. Rukstalis as a doctor, surgeon, teacher, researcher, manager since he is head of urology. I can only imagine how difficult his time management is. I have plenty of admiration and respect for him and I think I surprised him at  our last consult when I gave him a hug, it was just my way of saying Thank You. I can't help but like the guy also, I very much enjoy our conversations.  He gave me all the time I needed during my first two consults and I can't tell you what that meant to me. He answered all my questions and corrected some mistakes I made in my research of cryoablation. I know my consults after the surgery should last 10 minutes but the reality of the situation from my point of view is that I had questions that I needed answers too for closures sake and the time wasn't available for whatever reason. Issues and frustration had built up over a period of time and I needed resolution. To his credit, Dr. Rukstalis is the only person that I have communicated with that has given the time and consideration to the issues that I had. I don't need to be in agreement on the issues but all I needed to put those issues behind me was the consideration.

I've also learned from my experience with the urologist who took care of my kidney stones. I'll never put myself in that position again. I communicated my concerns and wishes during my history and physical appointment which included that I didn't want to be treated by a certain doctor. When I asked who would be included in my care, which is within my patient rights, I was told that information wasn't available. I relayed exactly who I didn't want to be treated by and felt that when the information of who was assigned to my case, should have be revealed to me when it became available. When that doctor showed up minutes before the procedure was to start, I was agitated to say the least. The anesthesiologist saw I was agitated and asked why and I was candid and gave the reason why I was agitated. I still only had minutes to decide what I should do. I know one option would have been to withdraw my consent but I decided to go through with the procedure because I had no doubts regarding either doctors clinical skills. In retrospect, I didn't anticipate the emotions I went through after the procedure. From my point of view, I trusted the doctor and my trust was betrayed and I experienced the emotions of betrayal and violation. When my emotions subsided, I concluded that shit happens and I couldn't imagine a scenario where anything was intentional. The one issue I had remaining was bedside manner. It was obvious to me that the doctor whom I didn't want to be treated by found out when I was under anesthesia what my wishes were. I was never consulted after the procedure and I find that totally unacceptable. I shouldn't have had to consider calling the office the next day or waiting for my next appointment with Dr. Rukstalis to ask for the outcome. I was satisfied with the clinical outcome and was able to put this issue behind me when I spoke with Dr. Rukstalis.

Some issues I will never understand. I discussed this issue with Dr. Rukstalis and I told him of my experiences of  professionals at Geisinger who tell me that he is a good doctor but that he treats his nurses badly. I was creative when we discussed this and I told him that having him as my doctor was like having a Scarlet R on my chest. All I  know is that when I walk into the Urology department, all the staff treats me with the dignity and respect that I think every patient deserves.  He should be commended for providing such an atmosphere. I've experienced the opposite and believe me, the last issue a cancer patient wants to deal with is a person who is rude and obnoxious which unfortunately, I've experienced.

I'm not naive and know in all organizations, people will gossip. It just amazes me each time people will open their mouths to clients regarding matters that should not be discussed with clients or in my case, the patient. I find that type of behavior unprofessional and it just pisses me off  to no end. Since my discussion with Dr. Rukstalis, I've changed my view on how I'll deal with it. Instead of keeping quiet, I'll pull them aside and explain to them that its unfair to both patients and Dr. Rukstalis and its definitely, unacceptable professional behavior.

I specifically mentioned my experience with the general surgeon to Dr. Rukstalis. You only get one chance at a first impression and hearing both the nurses and surgeons comments regarding Dr. Rukstalis did nothing in the way of letting me trust this doctor for anything other than an opinion. It also impeded my desire and ability to communicate effectively with him. I don't think it was acceptable behavior just like I didn't think it was appropriate for me to find out via a scheduler that he had scheduled me for a splenectomy. I believe proper protocol  would have been for him to inform me of the option before scheduling it. I just didn't have the level of trust I needed to pick up the phone to call him and say WTF is going on here. I also didn't particularly like the lack of information exchange when I asked about tumor size or location. I actually love my outcome with this doctor because he worked hard to get me a resolution on my spleen and it led to the incidental finding on my pancreas. The only thing I regret or am disappointed in is the reason why I dismissed him. I would have loved to have the opportunity to exhaust all possibilities and discuss all issues with him regarding my pancreatic tumor before I made the decision to seek treatment at Johns Hopkins.

I was also very satisfied with the outcome of the EUS with FNA by the doctor at Geisinger. My only issue was bedside manner. The exchange of information after the procedure was lacking from my point of view. I was given the opinion that the results from the FNA on my spleen didn't warrant any further intervention. I was also shown a picture of my pancreas and was given the opinion that it was an hemangioma and that the doctor was seeking a second opinion. I have no clue on why I was told this but my memory of the consult matches perfectly with my advocate and friend Bruce who happens to be well versed in neuroendocrine tumors since he had one resected  himself. I also wasn't told that an FNA was performed on the pancreatic lesion. I was completely surprised when I received the letter from the doctor who stated that I had a neuroendocrine tumor, as we discussed, especially since we didn't discuss it. I really didn't care about the "as we discussed" issue since it really didn't matter to me because I was notified in a timely manner by the letter. However, this doctor contacted me and asked if I could provide any follow up information to my case. I thought great, a doctor who really cares and that maybe I could ask him some questions as well and maybe benefit from his experience. It quickly turned into each of us sharing our memories of the procedure. The one statement that poured salt into the wound was his statement that he doesn't treat his patients that way. I love the fact that I benefited from his expertise and years of experience but I can't control what he remembers when I know what was said. I know one possibility of my current medical status is that maybe I might need to have the pseudocyst drained and one option is via EUS. While I would want someone of his experience and skill level performing such a procedure, the trust I need for him to perform the procedure just isn't there because of the lack of communication after the first procedure. As it stands now, I just can't make that leap of faith.

This brings me to my experience at Johns Hopkins and with Dr. Makary. I thought going thought the clinic was great and who wouldn't want a consult with doctors with the experience they have in dealing with my condition. I spoke ad nausea m with Bruce about this issue as I tend to see issues a little differently than others. I knew I was shopping for a surgeon and while I was getting the expertise provided by a place like Johns Hopkins, the care wasn't going to have the same pros and cons compared to getting evaluated and treated at an institution like Geisinger. I believe I've been in enough hospitals as a patient and as a visitor to know what is considered good care and I would consider both to be above average. When you go to Johns Hopkins for my condition, you are going  for the expertise of the surgeon and an issue such as surveillance, while important, is not really an issue that carries much weight for my particular case. I've been told by my providers that the surgeon who performed the procedure should have looked at and evaluated any post-surgical complication. I believe that is a perception and not a reality for this particular application. Lets call it what it is, I had one of the best perform my surgery, that's what he does, he helps people with pancreatic tumors. Dr. Makary liked to use the analogy that I hit a home run. I see it as I was the baseball manager, I used the ultimate pinch hitter and they hit a grand slam and cleared the bases, now its time for the next batter to come to the plate for me.

I thought everything went like clockwork as pertaining to the doctors I worked with while I was in Baltimore. The gastroenterologist who tattooed my lesion was top notch as was his bedside manner. He communicated the details perfectly. I love Dr. Makary because I love my outcome. Who wouldn't want to be treated by a surgeon of his caliber and reputation. He was there waiting with me before I went into surgery, he was pleasant when he visited my room and most of all, he gave me all the time I needed and answered all the questions I needed for closure when I had a consult a month after my surgery.

However, and there always seems to be an however whenever I'm involved and that is shit happens. I was told during my consult by Dr. Makary that he likes to perform the surgery within two days of a patient getting the tumor tattooed since the dye will only last about 5 days. I waited a few days after I received the EUS appointment and when I never heard from Dr. Makary's office, I sent him an email stating that I had received the appointment for the endoscopy procedure and that I wanted to make sure we were on the same page regarding a surgery date. He forwarded my email to his senior assistant.

I received an email from his senior assistant stating that they hadn't been notified of my endoscopy appointment and that they would look into it. I thought cool, ok, we are back on track and on the same page. We played phone tag but I finally talked to the assistant on the phone on 8/29/2008. The assistant informed me that I was scheduled for surgery on September 5, 2008 at 7:30 am, the day after the endoscopy procedure, providing the tattooing procedure was successful. What happened next would definitely be called shit happens.

I was never told when and where to report as well as no pre-surgery protocols for diet and I never received any correspondence in the mail regarding the surgery. After I was verbally given the date and the assistant started to say good bye, I started to ask questions. I have a medical history which includes a heart attack and while it was included in the medical history I provided for the Multidisciplinary Clinic, the only people who questioned me where the nurses at the Endoscopy Suite when they informed me of my appointment.  I was told they required the clinic notes from my last cardiologists visit to clear me for the procedure. My experiences at Geisinger have given me the experience to know that I need more than clinic notes to be cleared for surgery. I asked what documents I needed to provide to clear myself for surgery and  I was told that I should fax the notes from my cardiac cathetherrization procedure and last clinic notes to the office. I also asked about being interviewed by the anesthesia department before the surgery and was given the impression that I was going to receive an appointment. It was a holiday weekend with Monday being a holiday and the assistant always contacted me in the evening. On Tuesday, I did my thing and got all my medical records together which included me getting the results of my stress test which had cleared me for my cryoablation surgery some 6 months earlier. I then faxed everything into the office. I didn't hear from the office and started to call Dr. Makary's office on Wednesday, September 3. I must have called 7 times but always received the answering machine.  I left a message stating that I didn't know where and when to report for the surgery. I included my cell  phone as a contact number since I was traveling to Baltimore that day. I never heard back from Dr. Makary's office. I knew I could  send an email to Dr. Makary himself but I was still trying to deal with his office. I ended up sending an email to an operating room nurse who I worked with when I went through the clinic. I ended up getting the details of when and where to report from her.

After I went through the tattooing procedure, the nurses gave me a few crackers to eat and asked if I was allowed to eat any solid food. I told them I wasn't given any pre-surgery protocols to follow and that I was just about to go out and eat a big meal because I was hungry from not eating in preparation for the tattooing. They called Dr. Makary's office and actually got through and I ended up talking to a person. The young man I spoke with told me that the senior assistant was out sick. I was given the correct pre-surgery protocols to follow regarding diet. I then asked if they received the fax of my medical records. I was told they were still sitting in the fax machine.

Needless to say I don't think this chain of events should ever have occurred. I'm sympathetic to a persons illness but when they send out an email with a signature that states they are the senior assistant, it is safe to conclude there are other people available to take care of business should the need arise. This is a perfect example of why patients shouldn't communicate via email with their doctors offices. It's a different issue if you are directly emailing the doctor  asking questions.  I'm a computer geek and I know there is a email function called vacation that easily could have been set to automatically reply to anybody who sent an email to that account. If a person doesn't know how to properly use an asset, they shouldn't be using it. That reply could have included directions on who to contact since the assistant was out sick. It also didn't help that nobody returned a voice mail to the office.

When I was recovering after the surgery and Dr. Makary visited my room, I told him that I had some miscommunication with his office. I purposely never went into details. He responded that his senior office assistant was a very good asset and that the assistant had been ill. Personally, if someone told me one they had a miscommunication with one of my staff, I would want to know the details so that I could make the proper assessment and corrections if any were needed so that it could be avoided in the future.

This was a definite case of shit happens but its also a case of how a crisis brings out the best in people. It also demonstrates that a patient has to be informed and take some responsibility for their own care. I prefer  to look at this situation in a positive light. The staff at Geisinger and Hopkins more than made up for any deficiency but I would have preferred that it be a drama free situation but the end result is what matters. I had all the information  I needed when I met with the anesthesiologist the morning of my surgery and I was cleared.

I should have learned my lesson and contacted Dr. Makary personally but I contacted his senior assistant when I had an upcoming MRI. I was ivory soap sure (99 44/100%) that the clips they used during my surgery were MRI safe. My request to verify that the clips were MRI safe went unanswered when I contacted his senior assistant.

One doctor I just loved was the doctor who performed my colonoscopy. It was an informational orgasm. I didn't have to ask one question regarding the procedure or his qualifications. He answered any question I might have had during his explanation of the procedure. How ironic he mentions that colonoscopies are not perfect and less than two weeks later a report comes out stating the exact same thing and guess who is on Fox News giving his opinion, none other than Dr. Makary. I received the status of  the procedure immediately after, received follow up communications electronically and via mail. The only negative aspect of my experience was the Scarlett R on my chest. One nurse couldn't keep her mouth shut when reviewing my medical history before the procedure and felt obliged to give me her opinions regarding my urologist.

I seem to be a magnet for these types of situations. I know everyone has a bad day and that everyone makes the occasional error. I don't think for a second that these kind of issues are the norm and that they are the exception. I even realize that maybe I could do a better job.

I think I've experienced my share of shit happens. I'm amazed that I have a referral on file with my insurance company for a pediatrician. I have a fair assessment of the assets and their abilities at my disposal as well as a good idea in what type of environment they are operating in.  Long story short, I asked for referral to the gastroenterologist at Hopkins. I was handed an order for an upper GI by the staff. I knew it was an order but saw that it was just one of those days in the trenches. I waited two days and asked for another referral and received it. That original order was processed and that claim was paid for by the insurance company. It took plenty of effort to clear that up and I was treated like I was trying to steal services when I finally got a hold of the correct person to reverse the claim. It was just an example of shit happens.

Then there are issues that are totally gray area and who knows who is responsible. For example, I was only informed of the mass on my spleen because I asked for and received my medical records and read the radiologists report myself. Who is responsible to tell me of that issue? Where would I be 10 years down the road if I hadn't become a believer that I have to take responsibility of my own care?

I've only been under the care of my PCP for a little over a year. I've spent a total of less than an hour with him. I didn't have to trust or bond with him immediately like I had to with a surgeon.  I recently had a finding of a sub centimeter pretracheal node from a CT Scan at Johns Hopkins. While I researched it, I have no clue what it actually means and I'm not about to start diagnosing myself now. I made that mistake when I was diagnosed originally with kidney cancer and I wasn't going down that path again. I research my conditions so that I can assist when necessary and to make informed decisions regarding my care, nothing else. He ordered a CT of my Thorax as a follow up. I'm active in my own health care and after the ct was ordered, I know I need labs to be done in order to be allowed to have the ct scan. I knew that my team might not know this since it is not an issue they deal with regularly like say a surgeons staff would. They didn't order the labs I required and I alerted them to that issue and the labs were then ordered.

I know the procedures at Geisinger regarding requesting my medical records and I requested that study on CD which includes the radiologists report but that report can't be released to me until a certain amount of time has passed. As it turns out, I ended up with the report before I was contacted by my PCP's office. The study was done as follow up for the pretracheal node but when I was contacted by my PCP's staff on the phone, all I was told was that my kidneys were fine which was nice to hear but I see Dr. Rukstalis for opinions on that issue. There was no mention of the pretracheal node issue and no mention of the  pseudocyst (which is understandable since protocol would require being told in person) but I wasn't concerned since I already had the report and I knew I had an office appointment with my PCP in a few days.  I just considered it amazing that I wasn't told about the status of my pretracheal nodes, which was the purpose of this study.

This brings me to my PCP. When we discussed the pseudocyst, he was right on top of the issue and explained what type of intervention might be required. I told him I had already had the report and relayed the result of my communication with Dr. Makary. He had no issues with me having the report before I saw him. The bottom line is I know for sure that I am receiving excellent care and I have all the trust I need in him and his clinical abilities to follow his opinions.

I have the ability to adapt and I'm not green anymore as I consider myself a somewhat experienced now. I  still have gray areas but I value the experience of a partner who will take the time to explain a situation from a view I might not have considered. 

I love my bottom line. I love the quality of care afforded to me at Geisinger even with the anomalies. I may be naive but I'll never give up hope. I can honestly say that I hold no ill will towards anyone, life is too short. I can bury the hatchet with anyone and move on. This is real life and when feelings and egos are involved, shit happens. I know everyone who I have encountered  is doing their best to resolve any health issue I have. I know one thing is for sure, I feel the best I have both mentally and physically in the past year and I make no apologies for what I had to do to feel that way.

The only issue on my agenda now is to put some hard work back into my golf game to get back to a single digit index.

Shit happens...................

 

 

I've seen my fair share of specialists already but this is the first time my medical history is  being evaluated by an oncologist. I was referred to the oncologist by my primary care physician because of my islet cell tumor and post distal pancreatectomy operative changes, namely the pseudocyst.

I've only met one oncologist and that was when I went through genetic counseling at the Cancer Institute at Geisinger. I instantly liked him and could easily see why his peers voted him one of the Best Doctors in America for 2007-2008. I also appreciated the fact that he went beyond the reason for our consult and gave me direction regarding my pretracheal node issue.

The only other exposure I've had to oncologists are from the cancer forums on the web and from reading the blog of a retired oncologist. I take input from those sources with a grain of salt. However, I did make some observations like oncology has to be the toughest or one of the toughest disciplines in medicine. These doctors are dealing with the one emotion that all patients have when they walk in the door and that is hope. It can't be a pleasant thing to tell a patient to get their affairs in order after treating them and sharing that patients hope for a good outcome. I know each case is different and what works for one patient might not work for another. This discipline must have a high burnout rate as I can only imagine the long-term ramifications of continually having to take hope away from people and no matter how much one tries,  not everyone can detach themselves  from having patient empathy.

I've been called a difficult patient (not those exact words, but I digress) and I wear that moniker with a badge of honor. I research everything for the sole purpose of having the ability to ask questions for issues that I don't understand and to make an informed decision. I know I'm aggressive and rattle a few feathers since I don't follow any advice blindly like I have in the past, I have to have any issue explained to me in a way that I understand so that I can have the ability to make an informed choice .  I make no apologies for it whatsoever. I want to make an informed decision so I can live with myself after the fact just in case I get a bad outcome.

I've done plenty of research on neuroendocrine tumors. I've read published papers, I've read books, I've talked to other islet cell patients, I'm a member of an islet cell group which includes doctors considered experts in the diagnosis and treatment of neuroendocrine tumors and I've watched countless hours of videos from conferences dedicated to neuroendocrine tumors. I've been most impressed with one leading expert who gives so much of his time and energy to help patients by answering any and all questions on one of the internet forums.

I educate myself to the best of my ability so I can make an informed decision but there is one thing I know I can never do,  and that is to apply that information to my own case.  There is only one person who can evaluate and treat and that is the doctor.

You only get once chance at a first impression and I was instantly excited at the possibility of working with this doctor. The doctor spent plenty of time with me getting my medical history and he was spot on with all his statements regarding any issue we discussed. I'm aware of the NCCN Guidelines in Oncology for treating Neuroendocrine tumors and this doctor made all the sense in the world to me when he stated each case is different which means each case can have a unique approach. I know my islet cell tumor is a rare finding and even rarer that it was found so early. There aren't many studies out there to use as a guideline. My friend and next door neighbor sees a different oncologist at the same facility regarding his neuroendocrine tumor. I don't know the exact specifics of his case but I know his tumor was larger than mine, was in the head of his pancreas and he had a whipple procedure to resect the tumor. He gets labs and scanned every 6 months but I know that probably isn't appropriate in my case. I have a very good comfort level with this doctor and I have an another appointment with him scheduled for six months. He is going to consult with a surgeon regarding my pseudocyst and from what research I did, as long as I remain asymptomatic, a CT Scan in six months is an appropriate course of action for surveillance. We spoke briefly regarding serum markers and I mentioned an additional marker that I had read about that could be used for surveillance. I believe I got the point across that I'm not trying to be a doctor and am just assisting in my own care and that any information I bring to the table is to be evaluated by him. He asked that I followup with the name of the marker since I could not remember the name and I did via MyGeisinger with references to that information. We ended the consult with him telling me that he is going to review all my information, get an opinion from one of the surgeons regarding my pseudocyst and that he will get back to me when he finishes his evaluation.

I know that I have two low grade tumors and I know my stage and grade for my renal cell carcinoma makes Dr. Rukstalis the person to follow me for that issue. I'm very happy to be in that position since it means I'm in pretty good shape on that front since I haven't been staged or graded high enough to warrant being treated by an oncologist.

Now I'll just wait for the evaluation from this doctor.

I was happy the way 2008 ended. I'd say that 2009 started off with a bang.

I received a call from the genetic counselor who had submitted my blood sample to Johns Hopkins DNA Diagnostic Lab for VHL gene testing.  When I first heard her voice I said WTF could it be now. She had told me that I would receive a letter if the results were negative. I was [expletive deleted] thrilled when I heard the words "I have some good news for you". The results were in and they were negative for a defect in the VHL gene.

I'd have to say that was the last issue hanging over my head. Needless to say, I'm glad I tested negative for the defect. I'm still dealilng with controlling my blood sugar but thats peanuts compared to everything else.

I believe I have put my two tumors or cancers in the proper perspective for me so that I could continue to live normally. I know I have two low grade tumors and both were caught early. The surgeries I had are usually curative in nature. Both could return but I'm not going to sit and home to wait or worry about something that might not happen. Besides, I know there are many treatments for kidney cancer and that islet cell tumors are slow growing in nature and many patients live normally and a long time even with metastisis.

On December 19th, I had my 9 month post surgery consult with Dr. Rukstalis. The weather forecast was awful with snow expected to start overnight with accumulation from anywhere from 6-10 inches. I was going to postpone the appointment but said what the heck and went out to Danville the night before and stayed at the Pine Barn Inn.

I'd have to say this was one of my most productive consults.  I've had many issues that I've wanted to discuss with him and there never seemed to be a good time or enough time to discuss them.

One of the issues I had and what I've always wondered about were my post surgical complications, most notably the atelectisis.  I just wanted an explanation. I was feeling pretty good after my surgery and I was up and walking.  I pulled a stupid patient trick when I found a spirometer on my bed after returning from a walk. Nobody showed me how to use it like they did later with the flutterer but the damn directions are imprinted on it and macho me just blew as hard as I could and aggravated my right side so I didn't use it anymore. Then my blood pressure dropped to something like 90/50 after getting a dose of Lopressor 5mg and a nurse told me to stay in bed. The nurse was a little creative with her instructions which included a blurb that she didn't want me to fall because she didn't want to fill out the paperwork if I fell. If my memory serves me right, I stayed in bed from late morning to late afternoon and that’s when the complications started. I'd say the atelectisis was the most painful experience through both surgeries and recoveries.  I just wanted to ask Dr. Rukstalis about this and he explained why I received the medication and included an explanation on why I could have developed the atelectisis.  All the research I did on recovery stated that a patient should be up and walking as much as possible after surgery and I thought my odds for developing the complications were increased when I stayed in bed and didn't use the spirometer but I really didn't care about the reason why, I just wanted to hear Dr. Rukstalis explain it to me.  I was thrilled with Dr. S and Dr. K who handled my case and I knew I received excellent care and I left the hospital in pretty good shape. I still felt symptoms from the atelectisis for a good month but they eventually disappeared.

We exchanged our different views on all the issues that I brought to the table. We finished our conversation via an exchange of a few emails. I ended up with what I wanted and that was resolution.  I know this is the best I've felt in a long time. I appreciate that fact that Dr. Rukstalis took the time to deal with me.

I've been scanned plenty of times between our appointments to know that I'm in pretty good shape and Dr. Rukstalis pulled my MRI up on the computer and explained everything. I wanted to know about the cyst on my left kidney and he went over that without me asking.  He said I was doing well and thought I could go another year without seeing him but he decided that my appointment should be in 9 months. I like going down to Danville and getting everything done in a day but I don't experience anxiety when I have the MRI and it doesn't make a difference to me if I have to wait a day or two weeks for the results. I requested that any lab work if needed be done at Scenery Park and that the MRI be done at Grays Woods. It's just a matter of convenience for me as both of those Geisinger offices are less than 15 minutes from my house. I would just prefer just to go to Danville for my consult with him for the results. 

Dr. Rukstalis was also kind enough to give me his opinion on my post surgical changes regarding my distal pancreatectomy and splenectomy.

When I left urology the snow had already started to accumulate. I didn’t have anywhere to go so I just people watched for a few hours and stayed at the Pine Barn Inn another night and left early the next morning. The roads were clear and it was no problem getting home.

 

 

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In an era where healthcare reform is such a hot issue, one fact  as demonstrated in Massachusetts, is the shortage of primary care physcians. It was probably the best move I've made in the past year when I switched to my current primary care physician. Over the period of the last year, he has gained my trust. I just seem to understand everything that he recommends and that it makes total sense to me.

I had my regularly scheduled appointment yesterday. It was oh so sweet not going to see a specialist but that ends on Friday as I have an MRI scheduled and an appointment with Dr. Rukstalis, my urologist for a consult regarding my renal cell carcinoma. I've actually been looking forward to this one because its going to be a 5 minute consult at most.  The only item that will prevent me from going to this appointment is that I have to verify that the surgical clips used during my distal pancreatectomy with spleenectomy are made of titanium. Titanium is MRI safe while surgical clips made of ferrous/metal material will act like projectiles/shrapnel when introduced into an MRI. I'm 99% sure my clips are titanium but there is no way I'm going near an MRI until I'm 100% sure. 

We went over my lab results and a few labs that stood out were my hemoglobin A1C, which was 11.1, and my fasting glucose which was very high. I knew my A1C would be high because of the surgery and it did take a while to get my blood sugar under control. I've also been out of my regular routine lately so I haven't been the best at watching my diet. We looked at my previous weeks glucose numbers and upped my insulin a few more units. We discussed the possible use of short acting insulin to help control my diabetes. I'll get back into my routine and I know my numbers will get better. I didn't go through all this to shoot myself in the foot years down the road since uncontrolled diabetes can destroy my heart and kidneys.

We then turned our attention to the results of my chest CT Scan. He let me know that there was no lymphadenopathy which basically means there is no longer any appreciable enlargement of my pretracheal lymph node that was mentioned in a chest CT Scan done at Hopkins on 8/19/08. He then turned his attention to the probable pseudocyst located at the tail of my pancreas. I was not surprised at all as he gave me an explanation in easy to undestand terms. I had told him that I had the report and had contacted Dr. Makery, my surgeon,  regarding the issue. I had sent Dr. Makery the radiologist report and asked if I could send him the study.  I showed him the email I exchanged with Dr. Makery. Dr. Makery did not indicate that he wanted to see the study and told me not to worry and no intervention would not be required since I was asymptomatic. While I thought that was nice to read in an email, I would have perferred that Dr. Makery actually look at my study.   My primary care physician referred me to an oncologist to hopefully provide me an opinion that the probable pseudocyst is a pseudocyst.  I don't mind walking around with a pseudocyst as long as I have an opinion that it is a pseudocyst. I've attached an image from the study of the probable pseudocyst.

It's my birthday today. Thats another year older but I doubt another year wiser.  If the weather allows, I'll be headed to my sisters house this afternoon. Some of the family is getting together for dinner and to go to a school function that my nephew is in.  It should be a pleasant way to spend my birthday.

I must say that I didn't miss cold weather at all. It's a heat wave today at 45 degrees but it is raining. It sure beats temperatures in the teens and low 20's. Ive turned up the heat to keep warm and I really only leave the house to go to medical appointments and go food shopping. Other than that, its too [expletive] cold to go out.

I had my first procedure done last Thursday. It was a colonoscopy. It must be a man thing because I never heard so many men bitch and moan regarding the thought of a colonoscopy and a probe being inserted into their butt. On a scale of 1 to 10 with 1 being the easiest, this procedure was a 2. The only [expletive] thing about it was the prep and that wasn't too bad. I went to the Geisinger - Scenery Park Endoscopy Suite and I must say it was spotless. The staff was very pleasant and made me feel at ease. I loved the nurses. I also liked the doctor probably because he was a straight shooter and is one of the few doctors I've met over the past year who hasn't fed me any malarkey. He explained the procedure and his qualifications without me asking including the possible complications and the percentages of them occurring along with his personal track record which I liked.  I had the same sedative that I had at Johns Hopkins so I was happy that I knew I would be totally alert when I woke up.  I do remember waking up once before I got to the recovery room but there was never any discomfort.  After waking up in recovery, the doctor  explained they found two polyps and was able to remove them successfully. I was told they were sent for pathology and that if I hadn't heard from them in two weeks to call the number provided for the pathology results. One thing I liked about this team is that they gave me the procedure report and a nurse explained everything to me on the report. I thought that was a nice touch. They should do that in Danville.

I had my second test this past Monday. I had a CT Scan of my chest done at Geisinger Grey's Wood which is about 15 minutes from my house. This study was done to follow the sub centimeter pretracheal node mentioned in a study done at Johns Hopkins in August. I provided them with a copy of the studies from Hopkins.  It sure does beat driving over 90 minutes each way the Geisinger Medical Center in Danville. Again, as with every support staff I've worked with, the technicians were pleasant to work with. I also found out they have an MRI unit which I may utilize if I need anymore MRI's in the future. I laughed a little at the tech as she told me there would be a BIG PINCH when she inserted the IV for the contrast injection. It was the first time anybody actually used the term big when a needle was inserted into me and truth be told, I barely felt anything. I like CT's because they only take a few minutes. I must say the heat sensation (especially below the belt) from the contrast was probably the most intense feeling of any CT I've had to date.

I asked them to burn me a CD with the radiologist report when it became available to me. I was able to pick it up Tuesday and I was happy with the report. My lymph nodes were normal so I was happy about that. I got bonus imaging as my abdomen was also imaged. My dead kidney tumor is shrinking and being absorbed by my body. The indeterminate mass on my left kidney which the radiologist at Hopkins described as a probable complex cyst has remained stable. I like the fact that the radiologist mentioned a Houndsfield Unit for the cyst which I would guess makes it a class 2 on the Bosniak rating scale. One of my two questions for Dr. Rukstalis was going to be what his opinion was of this mass.

I met Tuesday with the genetic counselor that I had seen in September regarding DNA testing for Von Hippel-Ladau syndrome. VHL is a gene defect which basically makes people with the defect more prone for abnormal cell growth (tumors) in different parts of the body. I have two types of tumor associated with VHL which is why I'm being tested.  I should have had this test done in October but I fell through the cracks and the ball didn't get rolling until I contacted the doctor in charge of the genetics program in November.  I had blood drawn and I should have results sometime after 5 weeks since it takes that long to do the lab work for VHL.  

Since my abdomen was imaged, the radiologist reported postoperative changes regarding my distal pancreotomy at Johns Hopkins.  The item that stuck out was a probable pseudocyst (basically a collection of pancreatic juices) measuring roughly 4x4x3.5cm. Of course I researched pseudocysts. Many institutions like USC and Hopkins have plenty of information in easy to understand verbiage regarding pseudocysts.  I really wasn't too concerned as I am asymptomatic as I knew a pseudocyst  was a possible complication from the surgery. From what I've read, smaller than 6cm and asymptomatic usually means conservative management (wait and see) as these pseudocysts sometimes resolve on their own. I emailed my surgeon from Johns Hopkins, Dr. Makary and asked for an  opinion.

So far, so good. I have a regularly scheduled appointment with my primary care doctor on Monday. I then travel to Danville for an MRI and a visit with Dr. Rukstalis, the urologist who let the team who performed my cryoablation surgery.

It was exactly one year ago today that I walked into the emergency room at Fawcett Memorial.

I must say that I would have preferred never having cancer, but it has been a learning experience to say the least.  I've gone through many personality changes over the past year, from being scared and being very emotional, to finally being almost the same person I was before my diagnosis. I never knew or realized that there is an whole different universe of people battling illness and cancer. Its not a club I realized existed nor wanted to join.

About the only thing I could say to my family and friends who supported me is that I LOVE YOU and Thank You for being there when I needed you.

I've feel very  fortunate regarding the position I'm in and my current health status. So far everything has been caught early which usually means a good prognosis. 

I finally feel that I'm back to "normal" and in my regular routine again.

I'm not too thrilled with some (not all) of the health professionals I've met along the way. I guess I expected a little too much since  common decency doesn't seem to be in vogue with some specialists. I can't deny that I'm happy with my bottom line but the journey could have been allot smoother in my opinion.  I've enjoyed working with almost all the support people in the offices,  the radiology departments, operating rooms, etc...., but to be honest, I never want to meet you again.

Miscellaneous.   My vacation is coming to an end. I enjoyed the cruise very much but I'm still feeling the side effects two weeks later as I don't have my land legs back yet. I enjoyed catching up with friends that I lost contact with from as long as 20 years ago.  I enjoyed the Harley Davidson tour on St. Marteen as well as the beautiful nude beaches there. I managed to place third in a Texas Holdem tournament in the casino. I was thrilled since it  was my first time playing  and that I succeeded in my goal which was not to be the first person eliminated. 

My upcoming schedule has a few medical appointments which include lab work, some diagnostic exams and imaging procedures. I have a colonoscopy scheduled as well as a chest CT Scan and MRI of my kidneys and pancreas. I also have regularly scheduled lab work as well as lab work  regarding DNA testing for VHL. I'm not concerned in the least about any of my upcoming exams and procedures or lab results.  I don't anticipate any more bumps in the road but will deal with them should any be there. Life goes on.....

We had a little cold spell down here as I had to wear my winter coat when I took Sydney out for her walks in the morning. I enjoyed hearing my from friends and neighbors up north who called to tell me it was snowing.

I haven't been playing much golf but I do go out and hit a few balls to practice. I've been doing some maintenence around the house and made some repairs to a most essential piece of equipment, my hot tub.  I've been concentrating on my workouts and it has been paying off. I tried my weight program but it just didn't feel right and decided to hold off until after the cruise. With the help of my primary care physician and some insulin, I've finally gotten my blood sugar under control. It's actually better this week than last week and I might just ask my PCP to reduce my dosage if the trend continues. I still have some hope that I'll bounce back and be able to get off insulin like some other patients have done but I'm not holding my breath about that one.

I've also been busy meeting new friends. I joined an Islet Cell information list and one of the list members lives a few miles from me. We chatted on the phone for about an hour and I ended up meeting them and their spouse for lunch. I know I enjoyed exchanging ideas with them as its nice to know that I share the same thoughts and feelings as others.

I also went to my first Kidney Cancer Support group. It was only the second meeting of this support group. We had about 8 people there and each one shared their experience. I thought each person had a great attitude. Some of the members had their surgeries over 10 years ago and I thought the advancement in treatment options was very evident. We have members that have been through a variety of treatment options (like IL-2, sutent, etc) and it was very interesting to hear their experiences.  Most had nephrectomies while one or two had a partial and I was alone with cryoablation. I believe my tumor at just under 3cm was the smallest while the largest was over 20cm. I thought everyone in the group was pleasant and friendly. I enjoyed everyones company and am looking forward to the next meeting and hopefully making some friends in the process.

 In a previous blog entry titled “Celebration of Life”, I mentioned a friend who was terminally ill. My friend was part of the group of 20 or so men that I play golf with regularly. I was deeply saddened to learn of his passing a few days ago. His viewing was today and I went to pay my respects to him and his family.

I reminisced for a little while this morning about my friend. It seemed there was a time when I always got paired with him when we played. I remember the streak he had where he won the closest to the pin contest during Men's Day for seemed to be 7 or 8 weeks straight. We always had fun and he was very passionate about the game of golf. I always thought it was funny that he was giving me pointers about my golf game. I appreciated the tips but I always thought it was funny since we were both mid handicappers at the time. We always had plenty to talk about and we shared war stories regarding our business experiences. One thing I always admired about my friend is that you always knew where you stood with him and he wasn't afraid to voice his opinion.

I think it was in May, right before I left for Pennsylvania for my kidney stone surgery, I was in the pro shop of the club and going to sign up for Men's Day. I saw my friends name signed up as a single and I jumped at the chance to play with him. We shared the same old topics of conversation but I was seeing something else when we were playing. I was witnessing a man who knew and accepted the fact that his time was limited and he was out living his life to the fullest. I enjoyed that day and his company very much.

As a cancer patient, one of the issues I came to terms with was the fact that I am only human and that death is a possibility no matter what advances there are in modern medicine. Accepting that fact makes it much easier to deal with the illnesses I have and the reality that some day I might have a recurrence or another diagnosis or prognosis where the odds are not in my favor.

Without knowing it, my friend was an inspiration to me and an example of how I would want to be if put in a similar situation. He made tough decisions and didn't stop living.

I kept updated on his condition when I was up north by asking my other friends if he was still playing. I was hoping to have another round of golf with him when I came back but it wasn't to be.

One thing I know for sure is that I will always remember my friend and have the memories of his courage with me as I continue down the path known as life.

 

It has been an interesting past year to say the least. I'm enjoying my vacation so far.  I've been playing golf but I just don't seem to have the passion for the game like I had in the past. Golf just isn't a priority for me anymore. I couldn't wait to get back on the golf course after my kidney cryoablation surgery but I just didn't feel the same way after my distal pancreatomy. I love hanging out with my friends at the golf course but I'm developing other interests and will probably put golf aside for a while to pursue them.  I'm also going to be taking a break from making entries in my blog. Nothing will surprise me anymore regarding my health status but I'm hoping that I won't make any entries in my blog after my next round scans and appointments in December.

My appointment schedule for December is filling up fast.  I've also had time to sit down and review the performance of my current medical team. I've never been more clear on what I want to accomplish and have come to the conclusion that it would be in my best interest to make some changes again.  I've been working hard to make those choices a reality and eventually everything will fall into place. I'm not afraid to make changes as I believe I made the correct choices a year ago. Time will tell about my upcoming choices but unless I'm put in a position where I'm forced to compromise, I won't settle on care like I have in the past year.

I've played golf three days in a row. I had no problem walking the course. No pain, no soreness, no problem. 

I highly recommend minimally invasive surgery if you are a candidate.

I want to make sure I thank all my friends for their support. Their support made a positive difference in the way I was feeling especially when  they are offering words of encouragement and offering their time if I needed it.

Many of my supporters are my friends that I play plenty of golf with. All showed their support in different ways, many posted comments on my blog, many kept in contact via email and a few called me on the phone. One of the best moments I remember came when I was told that one led a prayer for me before my kidney surgery. I just pictured 20+ guys standing around the putting green and it put a smile on my face. 

I'm making it a point to thank each one personally. I went to the golf course yesterday and gave each one I saw a hug and thanked them for their support. If I miss one, I apologize but they read my blog and if I happen to miss you, THANK YOU.

My friends and next door neighbors are also big supporters of mine. They have gone beyond the call of duty. I probably have only done yard work three times in the past year. They mow my lawn, do my landscaping, watch my dog when I'm in the hospital or going for an appointment.  Even though I felt good enough to do all the work, they wouldn't hear of it. It doesn't sound like much but I was glad to do some yard work last week as I ran my lawn vacuum to pick up some leaves and mowed my lawn.

I also want to thank my family. THANK YOU.

I also want to thank all the medical professionals who helped along the way. THANK YOU.

How is one supposed to feel after going through evaluation and treatment for a pancreatic tumor? One thing is for sure, I didn't feel like popping open a bottle of Perrier Jouet's Belle Epoque after it was over. I felt so much pressure when I was dealing with my renal cell carcinoma. I was out of character and I was very emotional. It was probably the normal reaction when one hears the words "You have cancer".  This time around, I was very calm. There were no tears of joy or sadness. It was the real me. I was concerned with my diagnosis but I didn't go overboard or have bad thoughts as I learned about islet cell. I was very happy when I received the pathology reports from my distal pancreatomy. There were no feelings of anxiousness as I waited over a month for the follow up appointment and results. I see and know to well the emotional roller coaster ride that many go through when dealing with serious illness, treatment or waiting for test results.

I didn't mention this in my last post but the first thing I told Dr. Makary and the three residents was that I was a prick. I didn't mean that in a bad way although some of my business colleagues or staff from the past would probably disagree. I've always had confidence in any task or project that I've undertook. I've been very fortunate and successful in my business career and equally as fortunate, to say the least, in my personal life. I'm very content with my personal life. I'm not flashy by nature and would consider myself a meat and potatoes type guy but I do like to treat myself and go first class if I can when I do something. I lost that confidence for a while but now I feel that its back and I'm back.

I've learned quite a bit on this journey. I've stated in the past that I could put up with a bad bedside manner if the skills where there. I was wrong. I don't believe a doctor is good unless they have a good bedside manner. I know I can have my cake and eat it too. I know it may not always be possible and that I'll probably have to compromise in the future but if there is no immediate need for me to do that, I won't. I may not have the experience of a medical professional but there is one thing I do have plenty experience in and thats over 40 years of how to treat other people the way I would want to be treated. I may have high standards but thats the way I am, I always want the best possible.

I've got a few more issues to look into but all I can do is say NEXT.

Side Humor. I had a little fun with Dr. Makary. During our consult, he mentioned he wasn't good with email. Of course I couldn't resist and sent him an email thanking him for taking as much time with me as he did. I had sent him an email when I was scheduled for the EUS and included a little blurb about "being on the same page" as I was waiting for his office to schedule the surgery since there was a time frame involved for surgery once the tumor was inked.  He has also published an article or two on operating room personnel being on the same page. I was going to reference the articles in the email but didn't and he missed the pun. When he visited me in the hospital room, he changed the conversation by making a comment about the broadband internet card I had in my laptop and how he had one also. I also knew he published a paper on using Google and the Internet to find medical information. I figured chances are he is computer literate and thus couldn't resist as I do have a weird sense of humor. Of course the first line of my email was to the fact that I know you said you were no good with email but didn't you publish a paper about google and the internet? I included a smiley face. I received a nice short response back but one this is for sure, for a doctor, he is very hip and patient friendly. Don't worry doc, if I need anything in the future, I will contact your office.

I had an appointment today with Dr. Martin Makary, the surgeon who performed my distal pancreatomy laparoscopically at Johns Hopkins on September 5, 2008.

I know it's never a good thing to have surgery, but if you are ever in the position where you are a candidate to have this type of surgery done laparoscopically, I'd highly recommend it. There is something to be said about minimally invasive surgery in the hands of a skilled surgeon. My pain level after surgery was never over 1.5 on a scale of 1-10. The only reason I used the button on the pain pump was to keep ahead of the pain if it ever came. A lesson I learned when I said no to medication after my kidney cancer surgery.  I don't think I ever needed it and after the pain pump was removed a few days after the surgery, I never needed to take any pain medication. The only real discomfort I had was when I started eating regular food and that lasted about a week.

Let me tell you,  Dr. Makary should be the role model for other doctors in how to treat patients. Patients talk about good and bad bedside manner. He has neither, he has a GREAT bedside manner.  He set the tone early when he said he would take as much time with me as needed. There were also three resident present during the consult which I thought was great since I love working with them.

We first went over my history on how I ended up at Hopkins in the first place.

He then took a look at my incisions to which he said they looked like they were healing nicely. I've had two laparoscopic surgeries and I can barely tell which incisions are from which surgery.

I then took the opportunity to give him some feedback. The first thing I told them was that it made the biggest difference in the world to me that they treated me like a person instead of a disease. That was true from when I went to the Pancreatic Multidisciplinary Clinic all the way up to this consult. I told the group that patients know why they are seeing specialists and that being treated like a human makes a big difference. I know when I've been treated like a human, I act like a team player.  I then mentioned that they should expect any patient under 40 to be interested in their illness and that they probably have researched  that illness thoroughly on the internet. I then gave the group one example on why I consider Dr. Makary to have a great bedside manner. I told the group how cool it was and how reassuring it was to me the patient, how Dr. Makary was there the entire time with me in pre-op. He was in his street clothes and when the time came to get wheeled into the operating room, he was right next to me and peeled off to change and scrub before I entered the operating room.

I then start asking questions. My first question was how much of my pancreas did you have to remove and were there negative margins. He drew a diagram and told me he removed about 2cm of the tail and that margins were negative. I really didn't need to know how much he removed but I figured it would be some nice information to have if I share war stories or give support to other patients. I then asked when my spleen was removed, was any pathology performed and did they take and test any lymph nodes. That led to a printout of the pathology report and I was told the pathology was unremarkable (good) from the spleen and that 14 lymph nodes were removed and negative for tumor. Needless to say, this was good news and as Dr. Makary would say, I hit a home run.

I then asked about malignant versus benign. He explained that with islet cell tumor, there really isn't a malignant or benign but that one could be considered to have a malignant tumor if there is metastasis. This was right in line with my research and of course I was happy that the tumor was local to my pancreas.

I knew I had heart issues during the surgery and recovery and asked what they were. He explained which led to me getting a copy of the Operative Report. There is also another report that they will either be sent to me via snail mail or email.

We then briefly talked about follow up to which he made himself available to read studies if needed. I'm trying to avoid the long term effects of ct scans and hoping scans for my renal cell carcinoma will be sufficient for both.

Needless to say, I'm very happy with the way this turned out and that I'm in the best possible position I could be in. I'm quite aware by my research and by reading other patients stories how fortunate I am with this incidental finding. I read the Johns Hopkins Pancreatic Discussion Board every day and if anybody posts with the same presentation I did, you can be sure I'll point them to my blog, tell my story and offer any assistance I can to them.  I'm also thankful for all the effort from the people along the way. From the General Surgeon and Gastroenterologist at Geisinger, to the entire staff at Johns Hopkins.  THANKS FOR A JOB WELL DONE.

 

 I've read plenty an article on the subject of Doctor-Patient relationships and I also read a few blogs on the web, one of them is the Well Blog from the New York Times. I know, a patient who actually reads something from the New York Times, can this be true? The blog can be accessed at http://www.nytimes.com/well.

One of the contributors to the blog and to the New York Times Health section is a surgeon and well known author from Massachusetts. Some of her blog topics include, “Doctors and Patients Start Talking”, “Taking Time for Empathy”,”Are Doctors treating the Diagnosis or the Patient” and “Bad News delivered Badly”.  Its very interesting to see the view from the other side of the table and to know they get just as frustrated as patients in certain situations.

The topic with the most comments, from both patients and doctors is “Doctors and Patients Start Talking”, which is a link to an article entitled “Healing the Doctor-Patient Relationship”. There are 400+ comments from both patients and doctors with each one not afraid to give their two cents. One issue I agree with is that there can always be better communication between doctor and patient.

Many of the comments are valid from both sides of the issues. There are many issues involved in health care and it doesn't always come down to the quality of doctor-patient relationships. I can't list them all but I'm sure insurance companies tie the hands of physicians by limiting the types of treatments they can provide by not approving tests/procedures that are more expensive and may be of more diagnostic value than cheaper tests. I'm also aware the doctors have to make a living as well and that factors into the equation. Then you have outside influences like drug companies and medical equipment manufacturers who offer consideration for physicians to prescribe their drugs and use their equipment.

I have my own philosophies in choosing a provider. I try to stay away from private practice. I choose a not for profit (is there really such a thing?) for a reason. This mainly means teaching hospitals and professionals who do plenty of research. I also see a better infrastructure or investments in technology that benefits both physicians and patients. I know the physicians are getting a salary and their bottom line isn't affected if they see me or not. I'm not naive but I am optimistic and I believe they want to make a positive difference in a patients life although I do get the impression that they would rather be doing research than seeing me sometimes. I also like the fact that some institutions have a policy in limiting physician contact with pharmaceutical companies. Is it perfect? No. This strategy just coincides with my belief of trying to put myself in the best position possible for a positive outcome.

Since I was diagnosed with kidney cancer, I've become quite interested in my own health issues and a big believer in patient empowerment. I'm also like every other patient, I want the best possible health care available to me.

I'm the eternal optimist and have gone into each first consult with an open mind and I've trusted each specialist I've met so far to give me an opinion. I've been fortunate that I've received correct diagnoses and plans of action that are within accepted guidelines for those diagnosis.

I have no illusions that doctors are not perfect and am fully aware I have many faults also. Contrary to what doctors would like to believe, they are human and capable of mistakes just like everybody else.

It's not pleasant being on the receiving end of rant from a doctor and it really isn't pleasant hearing the words “I don't care” in any statement directed at me. This happened during the second consult with my first urologist. At my third consult to discuss the ct scan I had two days after the second consult, I took control at the beginning of the consult and told him we had to talk before we went over the scans. I was fully aware that he thought I was challenging his credentials at the second consult and I told him all the steps I took to get a good reference on him including researching the awards he won while in school and the positive references other medical professionals had given me. I got the distinct impression that it made him feel better and more comfortable. I then told him all the emotions I was going through. My professional background wouldn't let me show any weakness if I wanted to be successful and true to form, I wasn't showing any emotion during my first few consults. I could tell he was surprised when I told him the emotions I was experiencing when I finally heard the word cancer associated with me. My next question was obvious, “What did you mean by your statements at our last consult? I really didn't know what to expect but the bottom line was his answer wasn't good enough for me to trust him anymore. I still didn't question his medical knowledge or opinions he provided to me but I didn't have the trust needed to pursue a surgical resolution with him.

I give feedback to the doctors I see and if they want to discuss, fine. Do they listen? I don't care if they do but I tell them for my own piece of mind and also just to put that thought in their heads. I know the doctor-patient relationship is a two way street and both can end the relationship at any time for any reason. I don't wish illness on anybody but doctors get to find out the hard way when they become patients. There is an article on the blog called “When Doctors Become Patients”. The author also has published a book with that name. It's a very interesting read to say the least on how views change and how eyes are opened when the shoe is on the other foot.

I'm also continually learning as I go from specialist to specialist and from institution to institution. Its very interesting how each has their own style or way of doing things. I do see differences and they do and will have an impact on who I choose as a provider in the future. I've picked who I thought can get me the best outcome, regardless of institution but the institution will play a factor in my future decisions. I'm not totally oblivious or naive and know the issues behind why certain things are done. I've had surgeries at two different institutions. One institution sent me a “Not a Bill” invoice stating they would have billed my insurance company almost $90,000 for my care but billed my insurance company about $14,000 instead. The other institution only sent me a notice what they were actually billing the insurance company. I know there is a business behind health care but from my point of view, I definitely get the impression that the second institution wants to project a more caring attitude towards the patient.

I'm very fortunate to have a core team that I trust. My primary care physician is top notch. I came to him with many issues and helped me immensely with my long term health goals and to get me into a position for a positive outcome with my immediate needs. I don't fight him on any issue. There have been bumps in the road but I've worked hard on having a good working relationship with his team. I have no illusion of what goes on in the clinic every day. He has patients lined up every 15 minutes and every day must be a war. I know they are human and are capable of making mistakes. God knows they have witnessed me when I haven't been at my best. One thing is for sure, it's very easy to act like a team member and forget mistakes that may and do happen when I have no doubt they have my best interests at heart and they treat me like a person first and not a disease or a 15 minute time slot.

 

Endgame  - the final stage of some action or process

I thought I was in this position in July. I don't take anything for granted anymore. I'm not at the endgame position of my journey yet but I'm sure as hell going to enjoy a break for a while as I enjoy a vacation. I feel that I've been going nonstop being a professional patient since last December.

I'll be traveling tomorrow to Baltimore for a follow up for my distal pancreatomy. My appointment is Thursday morning but I plan on getting there late Wednesday afternoon and enjoying a nice dinner somewhere in the Inner Harbor.

Its taken almost three weeks to get some kind of control over my blood sugar. I'm working hard with my PCP and I think we are almost there. 

I also plan on being on the golf course come Sunday afternoon as I'm leaving for Florida on Saturday morning.  It will be nice to get away and relax. I don't care what happens at my appointment on Thursday, I'm going to be out on the course and enjoying myself.

I also have a cruise coming up in November. I booked it months ago before I even knew about the tumor in my pancreas. I thought I would have to cancel and use the insurance I purchased but I am pleasantly surprised that I am recovering quite well from the surgery. I'm also excited because I booked an excursion called "Harleys in Paradise". Its an all day tour of one of the islands I'm visiting on a Harley Davidson. I gave up riding and my motorcycle about 5 years ago and am looking forward to the experience.

My schedule gets busy in December again. My PCP ordered a colonoscopy for me based on my family history of colon cancer.  I also have a regularly scheduled appointment with him. I should also have an appointment show up about that time for an MRI and checkup regarding my kidney cancer. I also have a few other issues to watch but time will tell on those.    

 My next significant appointment is the follow up appointment with the surgeon who performed my distal pancreatomy. I'm basically going to receive my pathology report and discuss any follow up protocols if appropriate.

As I've mentioned before, I do my own research on the diseases I've been diagnosed with. I'd say researching islet cell/neuroendocrine tumors is much more difficult than researching renal cell carcinoma only because of how rare the disease is.

I like to use pubmed and Google Scholar to search for information about my diseases. Its nice to read abstracts but if I find an article/study that is on point with my diagnosis and has a recent date of publication and is from an author with a good reputation or medical center that is considered a leader or high volume center for my disease, I'll read the whole article. One item I like is that there is usually a discussion at the end of the article/study where other doctors ask the authors questions. Doctors have to keep up on diseases/treatments in their specialty and you can bet, if they are any good, they are most likely reading the same articles I am. I'm also very fortunate to have tons of medical professions in my support group so I can ask questions if I don't understand anything in the articles. I also like the fact that most of the questions are ones that I would ask my provider.

One issue that I am aware of is that doctors don't always like answering my questions. This is another reason I like reading articles on point because with the questions that are asked in the articles, doctors have no problem answering other doctors questions. Some doctors have excellent communication skills and can be subtle and change the subject but I'm quite aware what they are doing and that they didn't answer my question. I also believe the doctor is making a decision of what he believes what is in my best interest on how much information I need to know. I believe this is one of the reasons why I seem to have a love/hate relationship with my providers. I've come to accept thats the way I am and its how medicine works but I haven't lost site that our goals to get a positive outcome are the same.

Its one thing to want to read the article, its another thing to actually get your hands on it. The articles are referenced in the abstracts so I know what periodical they were published in and when. This is where my experience in computer science comes in. I loved Adobe Acrobat when it first came out because it made it easy to disseminate information. There is a good chance that somebody has the article in Acrobat format. Google has an advanced search function to look for file types and I tell Google to look for PDF file types. There is also a good probability that somebody doesn't know copyright laws and has posted it somewhere on the web. There is also a probability that the institution that the authors who published the article have it posted somewhere on their site. It doesn't always work so there are a few other options to get your hands on the article. You can run down to the local hospital and ask the librarian to get the article for you or you can subscribe and pay a fee to a service that references the articles. I don't have any problem paying a subscription fee even though it can get expensive sometimes.

I found many an abstract and article (1)(2) regarding my conditions. Yes, I being cute in using references to two of the few articles I've read both before and after I sought a second opinoin. I'm not going to hotlink them because I didn't ask for permission from the author.

I didn't come to my decision to seek a second opinion on my own because I stayed at a Holiday Inn Express or I didn't like the first opinion. I read articles and the questions doctors asked regarding my condition. It didn't take a rocket scientist to figure out that an aggressive approach was a prudent way to handle my tumor in my case. I'm relatively young and I'm aware this was a factor in the opinion of resection. I don't know if they would recommend surgery for somebody who is 80 years old with the same size tumor I had, but I was only looking at myself. When you read opinions from what I consider leading researchers in my disease and they recommend an aggressive approach and resection, thats what I'm going to seek out.

Learning Medical terms and what I consider basic concepts

I'm not trying to be a doctor and I'm not trying to be difficult with my provider. If I'm in their office, I'm already comfortable with their credentials. I don't even see a need to interview them if their credentials are impeccable just like with my surgeon at Hopkins. I know from past experience that at least one of my providers thought I was challenging his credentials when I was asking questions and that was the furthest thing from my mind. His response to my question was not to pleasant. I'm not one to back down and had no problem confronting this provider face to face regarding this but thats another story and irrelevant now.

I like to know basic medical terms and what they mean. This knowledge helps me understand my condition and also lets me understand the doctor if he uses any medical terms. I believe this helps me deal with the long term implications of the disease I've been diagnosed with.

I don't really like the term cancer or the word tumor. Its only a preference but I think the term neoplasm is sexier. I know it doesn't mean anything but I am who am I and like what I like.

I believe everyone knows the difference between the words malignant and benign. I like the fact that I have not yet received an opinion of malignant regarding my neuroendocrine tumor.

Its also prudent to know what the word differentiation means. In my case, I like seeing the word well differentiated because that usually means the cells that make up my tumor are close to looking like what mature cells are supposed to look like. It usually means indolent and slow growing. I don't like seeing poorly differentiated because that usually means the cells that make up the tumor don't closely resemble the appearance of normal cells and that it usually means fast growing.

I also like to know what the term margin actually means. Positive margins mean they didn't get all of the tumor and you still have residual tumor after resection. Negative margins mean they “got it all” but in my mind, there is some grey area in that depending on what pathologist is reading your slides because some consider one normal cell good enough for a negative margin while some have a different standard of needing 2mm of normal cells to have a negative margin.

There is something also out there known as resection ratings. There are basically three ratings, R0, R1 and R2. My understanding from reading the articles referenced and this is only pertaining to islet cell tumors is that resection is usually recommended when a resection rating of R0 or R1 can be achieved, which basically means having resection will help the patient. Regarding Islet Cell, that usually means the word year is used instead of months when trying to extend a patients life expectency. R0 basically means that the patient will be histologically (pathology report) free of tumor after resection. R1 basically means there is residual disease (including metastasis) left behind after resection. R2 basically means there would be gross residual disease left behind. From my understanding, that usually means the patient has presented with disease that can't be dealt with in a curative manner (a R0 or R1 rating can't be achieved through resection) and that means palliative treatment which can still add plenty of time to a patients life.

There is also a term I hate with a passion. That would be “We got it all” when the surgeon tells a patient the outcome of the surgery. When a patient hears those words, they think they are free and clear for the rest of their lives. I believe it to mean that the tumor I had was successfully resected and that an R0 rating was achieved. I've also received one explanation from a surgeon about “microscopic cancer cells” which I thought was enlightening. I've read too many patient experiences where they were told “We got it all” only to be devastated when either months later or years later they have a recurrence and metastatic disease. I know my prognosis from my renal cell carcinoma is the best I could hope for. I'm a realist and I know that even with my good prognosis, there could be dormant (for lack of a better word) clear cell carcinoma cancer cells somewhere in my body and not yet detectable or growing. I also know that the doctor can not tell me with 100% certainty that I won't have a recurrence down the road.

What does this mean to me in my case?

I know some might think this is too much information for a patient. Thats what opinions are for. I read my medical reports and am aware of what my health status was before I had the surgery. I know I can't be 100% , I know possibilities but I see a provider and ask questions for a reason , but according to any ct scan or mri I had, I didn't have any enlarged lymph nodes near my pancreas which could be considered suspicious for disease. Even though it probably isn't 100% accurate, even though my spleen was removed, crushed, pureed, liquidfied or whatever the correct term is and removed via a bag, the FNA I had only revealed normal cells in the mass I had on my spleen. I've read that neuroendocrine tumors can metastasize to the spleen. I also know another common site for metastasis is the liver. I know from previous ct scans and mri's that my liver is clear even though I know there is a small mass that is to small to identify but most likely a cyst according to the radiologist report. I also know in the past, that a patient needed to present with metastasis to get a diagnosis of a malignant mass. I also know that my mass was incidentally caught and small. I know my case is not the norm and there is not much information out there. I am aware of two cases where the tumor was less than 2cm, resected and benign but the patient later had recurrence of islet cell to their liver. Conclusion: I know there is a good probability that my tumor is benign. Although I'm concerned about receiving the final pathology, I'm not going to sweat the results. I've read enough to know that in this case, even when malignant or even when dealing with metastasis, the chance of long term survival is good because of the indolent nature of the disease. Think of it as knowing the worst and hoping for the best. I'm also aware and hopeful that future research will offer treatments not yet available. There are plenty of dedicated researchers out there doing their thing. One word I also hate is “Kaplan-Meir”. Its basically a curve or algorithm that calculates probabilities and is used by researchers when doing a study. I like to know the probabilities but I'm also aware that each patients case is unique and I really can't go by studies. Its nice to know that I have about a 96% chance that I won't experience a recurrence regarding my renal cell carcinoma, but my case is unique and only time will tell. I like to know the possibilities and am a realist. Thats the way I roll and knowing the possibilities helps me deal with the disease. I don't think about cancer or have a cancer alert go off if I have a sore back or feel funny in my flanks or abdomen. I just refuse to be a prisoner and as long as I have a good quality of life, I'm happy. I have some questions for my surgeon but not many. I know before going in that he can't tell me with 100% certainty what my future will be. I know my research has been incomplete in the past and I've been corrected by my provider because I asked the questions. All I know is that no matter what I discuss with my surgeon at the upcoming appointment, I won't stop living my life when I leave the office.

References:

1. Resection of Pancreatic Neuroendocrine Tumors, Results of 70 Cases; Kevork K. Kanzanjian, MD; Howard A. Reber, MD; Oscar J. Hines, MD; Arch Surg. 2006;141:765-770.

2. Aggressive Surgical Resection in the Management of Pancreatic Neuroendocrine Tumors: When is it indicated?; Pamela J. Hodul, MD, Jonathan R. Strosberg, MD and Larry K. Kvols, MD; Cancer Control, October 2008, Vol. 15. No. 4;

Its probably one of the toughest tasks in the world. I can probably write tons about this subject and not even come close to covering all the issues.  

I know I didn't have a clue how my uncle and best friend felt when he was diagnosed with a neuroendocrine (carcinoid) tumor in his small-bowel. Much to my chagrin, I found out exactly how he felt a few years later. Just like my aunt, I was right there with him every day in the hospital when he went through his surgery and when he was recovering. I can tell you, its takes a big physical and mental toll on the caregiver to be there for all those days and hours. Its also very hard to see somebody you love in pain and also suffering. All you can do is be there by their side and offer as much support as possible. It doesn't have to be words of encouragement, it can just be a touch of the hand and they know they are not alone. I know when I was having complications after my kidney cancer surgery, it made all the difference in the world to me to know that he was just there and with me late into the early hours of the morning.

I was also there for him after the surgery. My uncle followed up with an oncologist at Moffitt Cancer Center in Tampa, Florida. They have an excellent reputation and his oncologist has one of the best reputations for treating carcinoids. Every cancer patient knows about the possibility of recurrence. All fear it and some handle it better than others. Getting scanned for cancer can definitely make your stress level go through the roof, especially the first few times. Take into account one of the first things you see at a place like Moffitt, is other cancer patients getting treatment. I know it broke my heart to see young children there and that alone can put the fear of God into someone. I know he was very anxious and stressed out for the first two years whenever he was scanned. I did all I could do to support him and told him many a time how much I loved him.

About twelve years ago, my uncle also had surgery for a tumor on one of his lungs. Navy pathologists got sent a sample of the tumor and couldn't even identify the type of tumor. Every two years, he goes for a broncosopy to make sure he is all clear. Yesterday was that day. My aunt wasn't available and I did the same thing he did for me, I supported him in any way I could and took him for his appointment.

He gets anxious and his blood pressure was high. The nurse also had trouble getting his IV in on the first shot. One thing about this procedure and hospital is that they let me stay with him every minute except when they took him into the suite where they actually do the procedure. When they finally did take him away, I gave him a hug, told him I loved him and that everything was going to be ok. I was very happy when I met with the doctor and he said everything looked great.

One thing I noticed when he was "waking up" after the procedure, is that he kept asking me the same question over and over again. I know I got a pretty potent cocktail when I had my first endoscopy procedure and was asking the doctor the same question over and over. I'm still surprised that at my second endoscopy procedure at Hopkins, I was fully awake and totally alert when I woke up after the procedure.

It took about two and half hours before he was released but I did all I could to help him and make him feel better. I kept telling him the doctor said he was clear and I think I spent over an hour rubbing his back when he sat up because it made him feel better. I also took pictures of him with my cell phone and sent them and a text message to my aunt to let her know everything was ok.

He has been one of my biggest supporters during the past year and I was just happy that I could be there for him when he needed some support.

It's a never ending learning curve as I travel through the world of medicine. I know I'm continually analyzing and reassessing events along the way. I'm not afraid to admit I've made a few mistakes but one thing is for sure, I'm believe I'm getting the hang of it or at least I have something that is working for me.

My Core Team. I love my working relationship with my PCP and also my cardiologist and his staff. I have discussed many an issue with them and have no problem feeling comfortable enough to be candid with them. They also have gone beyond the call of duty and helped me get through roadblocks when I've run into issues.

My Friends and Family. They offer so much support and pearls of wisdom. I know by experience that one doesn't always see the whole picture when dealing with emotional situations. Its so much easier when you are looking from the outside in to evaluate a situation. My friends and family have been very supportive. In the beginning, I went to all my appointments by myself, now I try to bring a second set of ears with me as much as I can if I think the situation warrants it. I'm fortunate enough to have access to many medical professionals if I need them. I really don't like using them if I'm seeing somebody but I won't hesitate to ask general questions about procedures and issues like that. I've also learned not to discuss everything with my mother. I love my mother and I value her experience as an operating room nurse but she will always be my mother first and not be objective by default.

Medical Professionals. I'm not talking about my core team or specialists I've seen. I'm talking about all the people I've met in the operating rooms, the endoscopy suites, radiology, nurses and support staffs in the hospitals and in clinics. All have made what could be a difficult situation easy. I'm always satisfied when I go through a procedure and I have no complications. I can't write about everybody but I loved the pre-op staff at Hopkins. The anesthesiologist was great even though she was a Steeler fan and the nurse anesthetist was a gem. The operating room nurses were easy to work with and were very professional and pleasant at the same time. I had no stress and all I had to do was sit back and let the surgeon do his thing.

I loved the gastroenterologist at Hopkins. He just spoke my language (giving me percentages) when he answered my questions. I even got a smile from the attending physician when I started asking questions about the different types of dyes that could be used. Just like at Geisinger, all the support staff were great and easy to work with. I learned not to jinx the nurse at Hopkins like I did at Geisinger as she got my IV done in one shot.

Doctors/Specialists. I haven't met a doctor yet that didn't know their specialty. I think about who I am dealing with: pioneers, researchers, people who have had a passion since they were young and followed through on their dreams of becoming a doctor. They have all gone through years of training to get where they are. All they want to do is make a positive difference in a persons life. I also know they are just as passionate about their craft as I am with mine. This is where I think medicine is part art form and science. Some doctors are just as gifted in their specialty as they are in the art of communication.

When I walk into the door of a doctors office for the first time, I've done my homework and have checked out their credentials and probably have a good reference or two. The first thing that I think about is whether or not I'm going to trust the doctor. There is no rhyme or reason to how I arrive at my decision to trust or not, its just basic instincts.

The first person/people I chat up is the doctors staff. If they like their job and think the doctor they are working for is good, they have no problem showing their pride and letting me know they think their doctor is the best. I also chat up the nurses in places like the endoscopy suites and they are the same way, they will let you know if the doctor is good or not.

Doctors are some the most confident people I've met. Let's face it, a doctor without confidence is not somebody I want to be treated by. I've always thought I was a good judge of character but trying to get a read on a doctor is almost useless because they are so confident and they have no problem showing that trait. I'm a quiet person by nature but I have no problems chatting up a doctor. I'm interviewing them as much as they me during an H&P. I ask questions to try to and get them to talk about themselves. If they won an award, been recognized for their work, have had research papers published or do something like give lectures at medical conferences, I ask. I'm also trying to read them by body language. Once I make that determination of trust, its time to get evaluated.

Doctor/Patient relationships are probably one of the toughest types of relationships. The stakes are very high. The deck is totally stacked against the doctor to begin with. Especially if you are going to a specialist, a patient is already emotionally charged and already knows or has an idea of what the problem is and probably is thinking the worse.

I know I've learned along the way. I've learned not to get emotionally attached to my doctors. I know I was very emotional and attached to my first urologist because I was scared, I was dealing with the diagnosis of cancer for the first time and because I liked him very much. I should have went back to Pennsylvania after my second consult. I have plenty of respect for him because of his medical ability, his journey to become a doctor and also because when I look at my bottom line and put all the distractions aside, he helped me. I think communication could have been better on both sides.

One thing I won't do is go against my instincts anymore. I went against my instincts with the urologist who treated my kidney stones. This may seem insignificant but something as simple as not getting a handshake should have told me all I needed to know. I know if I was interviewing somebody for a position at a firm I was working for and they didn't offer their hand for a handshake when I first met them, they wouldn't get to a second interview. When the urologist entered the exam room, I stood up to greet the doctor and started to extend my hand for a handshake. When I realized the doctor was not going to extend their hand, besides making me feeling like a fool, a red flag went up in my head. I ignored it. I wasn't thrilled with the way events panned out, but I've learned to put it behind me.

One of the most passionate people I've met so far is the general surgeon I saw for my spleen. I knew he cared allot about me. I never saw anybody work as hard to get me a resolution. He brainstormed at each of my consults and at my second consult, he thought “out of the box” and offered me a resolution that he didn't offer at my first consult. That of course was the EUS/FNA. I knew there was a possibility before I walked in the door that a splenectomy might be in my future. I'm a prick about protocols and I got upset before I even got to the exam room because his nurse told me that patients who have splenectomies get immunization shots. I felt like I was in a car dealership and they were pushing for a sale only for the fact she couldn't wait before I got to an exam room to give me that information. Get me into an exam room and tell me anything you want, then I'll take it in the proper context. I lost my composure for a while and I know I ranted when I got interviewed by the resident. I also got upset when a scheduler told me about an appointment for a pre-surgery interview. I knew a splenectomy might be recommended and I knew that was a possibility the doctor mentioned at the first consult. I got upset because I didn't have an opinion yet and I knew the appointment meant I got scheduled for surgery and a splenectomy. I'm thinking what does the doctor know that he hasn't told me yet. I know I could have put an end to it right there by picking up the phone and asking but I'm stubborn and getting scheduled for surgery is something I want to hear from the doctor and not a scheduler. What did I learn from this? I know I overreacted and everything was unintentional. That doesn't mean I shouldn't have been concerned but I'm not one to kiss anybodies ass and its just my nature to like and care about someone who making an effort to help me even if there are some distractions. I know my goal and the doctors goal were the same, get a positive outcome. It just goes to show there can always be better communication from both sides in doctor/patient relationships. I know I like and care about this doctor very much but I didn't get emotionally attached like I had in the past where it hindered my own judgment. We ended up having different opinions of the neuroendocrine tumor and there was nothing wrong with that.

By the time I got through the clinic at Hopkins, my philosophy had evolved regarding doctor/patient relationships. Communication on both sides is very important. I'm always looking at my bottom line and thats the most important thing. Its just the nature of the beast that distractions occur. I look at every relationship now as me being a partner. Through my blog, I've been able to communicate with other patients of the urologist who treated my kidney cancer. One fact we talk about is how he asked each of us to be his partner and how each one of us jumped at the chance. I know it made me feel good and I would have jumped through any hoop for him because of it. Its great to be asked to be a partner but now I act like a partner regardless when I'm seeing someone. I know I have to work just as hard as anyone to get the best outcome I can.

It wasn't easy getting to the operating room at Hopkins. There were communication breakdowns along the way. Hopkins is a different animal compared to Geisinger in terms of the way things are done and what I'm used to. I was like a fish out of water. I know I have a certain comfort level at Geisinger mainly because of their patient front end called mygeisinger. Mygeisinger allows me to view parts of my medical record online which includes innoculations, lab results and upcoming appointments. It also allows me to communicate electronically with my providers. I can send messages and know when they are read via a time stamp on the message. As far as I could tell, Hopkins doesn't have a tool like this. I know mygeisinger helped me immensely even though I was being treated at Hopkins. I had to provide lab results to the clinic at Hopkins. All I had to do is go to mygeisinger and print them out. I also used mygeisinger to get information I didn't have access to faxed to Hopkins. I used every asset I had at my disposal to get me to that operating room. The people at Geisinger and Hopkins each helped me immensely. The bottom line is that I didn't get upset like I would have in the past and I was totally relaxed and stress free when I finally got to the operating room.

I'm learning along the way just like everyone else. I know I've received excellent care from each provider I've encountered. I know how important communication is. I just now have the experience to know what is important and what I shouldn't sweat. I know everyone is doing everything they can to help me. I know I won't hesitate to ask in the future and to leave my ego and stubbornness checked at the door and just think clearly. I'm still going to be prudent about what provider I see, but I'm not going to let distractions get the better of me anymore.

I've never really given a description about me other than a few words here and there. A few of my friends know the real me but not many because by nature, I am a very private person. Well, here goes nothing. I'm 43, born and raised in the Bronx, New York, I guess you say I have New York street smarts. My parents divorced when I was 2 or 3. I never had much contact with my father and when I reached a certain age, I really didn't care. My extended family was small and my grandfather became my father and male role model.

What can I say about my mother? She calls me "fresh", mainly because I joke with her allot and will say anything to her. She has been one of my biggest supporters since my diagnosis. I also like to use all the gems she used on me when I was growing up. You know, when she said "We'll see" that meant NO. After my parents divorced, my mother went back to college and became a registered nurse. I'd say she did a good job being a parent, she was raising three kids, studying to become a nurse and being a provider at the same time. I'd say she is a strong woman and stubborn, once she made up her mind, that was it, I'd say I get that quality from her.

My brother and sister are just like any other brother or sister. They have been very supportive. I'm very glad I've reconnected with my sister. We all have our own lives but I know if any of us need help, the others will step up to the plate.

I spent plenty of time when I was growing up with my grandparents. My grandfather was the strong and silent type. He never said much but when he opened his mouth, you knew it was serious and you listened. When he was sick and dying with cancer, I would come home from school in the afternoon and help take care of him. He spent allot of time in bed and I would have to help him out of bed and basically hold him up while we walked to the bathroom and he relieved himself. I never once heard him moan or complain. I know I get most of my strength now because of my experience with him.

I also spent plenty of time with my aunt. I was very close with her. I still remember the day she suffered a brain aneurysm. She was brain dead and was on life support before she was allowed to pass. I was a teenager and never wanted to go to the hospital to visit her because I didn't want to remember her that way. I think about her allot but I always think of the good times we had. I miss her.

I was an average student through grammar and high school. I was never motivated until I had to pay for my own education out of my own pocket. I originally went to college to become a pharmacist. I worked in a drug store while I was in grammar school and in high school. I loved the lectures but hated the labs with a passion. I would rather go do something else than spend 3 hours with test tubes and the bad smell of chemicals.  I then decided to pursue a career in computers. I earned a degree in computer science and I'm also a few classes short of having a degree in accounting. I always had the intention of finishing the accounting but never got around to it. I did continue my education but it was always a continuing education course in programming/computer science. I wasn't always the brightest color in the crayon box but I worked hard and finished with a 3.88 gpa.

I had a successful career while I was living in New York city, working in the financial sector, mainly financial printers and wall street firms. I've always worked in very political environments and have a pretty good on board politically correct language translator which I also call a BS meter. I'm a firm believer in proper protocols and I'm also very detailed oriented. I loved working under pressure and the adrenaline rush it gave me when a crisis was resolved or a time sensitive project was completed successfully. I also loved the working relationships I forged because we all worked together for a common goal and mostly everyone I worked closely with was just as dedicated as me to get the task done. I enjoyed a great career and held a good position with a fine firm. I had a great salary, extraordinary bonuses, outstanding benefits and quirks. All of these benefits come with a price. I probably worked an average of 55-65 hours a week. At busy times of the year, it was probably more like 75-80 hours a week plus weekends. I didn't mind because if I walked in the door on a weekend, it was a generous stipend in my pocket per shift even though I was salaried. I was also in a rotation to do system backups on the weekends anyway and didn't mind spending the 4-5 hours it took to do the backups. It was quiet time and I got to catch up on my projects when nobody was around and believe me, you get more done in 4 hours when you are alone versus 10 hours of dealing with phone calls and production. There was a time when I probably went over a year without a vacation or had a weekend off. That was when I was a systems manager and responsible for a 24 hour data center with network connections in three major cities so I was responsible for supporting them also. I also know I annoyed the crap out of some of my friends and co-workers because I always held my cards close to my chest and they knew I was very calculating always running scenerios through my head. I guess you can call that the analyst in me. I also can quote people verbatim from conversations years ago which also bugs the crap out of one of my friends.

I don't really know why but I just lost the desire and didn't get that adrenaline rush anymore. I also didn't want to put in the time required. I was very loyal to the owner of my firm. This was a firm that everyone in the business wanted to work for because of all the benefits the owner provided. One benefit was that we had accounts with many fine restaurants and employees were provided breakfast, lunch or dinner. It didn't help my waistline any but it sure beat eating subs or grabbing a dirty water dog from a street vendor although I must say there is something to be said about the taste of a New York city dirty water dog.  There were other reasons for my resigning but I felt if I couldn't give 100%, I wasn't giving the owner all the effort he deserved. I was probably one of only two or three people that ever resigned from this firm. The owner always wanted to do an exit interview with me but it never happened.

While I loved living and working in New York City, I came to appreciate the suburban lifestyle. Over the years in New York, I kept moving farther away from the city. I ended up living in Harrison, New York and loved that type of setting. I ended up leaving New York and purchasing a home in the State College area of Pennsylvania. I made a career change to self-employed computer consultant. I'm fortunate enough to be able to set my own schedule.

I'm starting to get that itch again and am considering another career, either something in IT or going back to school for another discipline. I've recently began to explore the programs at Penn State since I live 5 minutes away from the main campus. I enjoyed interviewing and getting offered a position last January. I enjoyed putting on a suit again and must admit that I like to dress up and that I'm a Hart, Schaffner and Marx man. I think I have almost 20 suits in my closet that haven't been worn in years. Even though I dress totally casual and you can call it a pet peeve of mine but I must admit that I check out the couture of the doctors I meet. It has nothing to do with their credentials but I look at it as an intangible quality. So far, I've been most impressed with my surgeon at Hopkins.

I have no regrets about anything I've done in my past that may have caused my maladies. I also have no fear of the future. I don't really know how to explain it but I don't fear the future because I don't feel cheated regarding the quality of my life. There are some things you can't control (I don't mean lessening risk factors via lifestyle changes) and recurrence is one of them. I don't worry about scans. I probably embrace scans because the result will tell me two things, I'm NED or chances are a new issue has been caught early and I need additional treatment. I know I've been fortunate with early detection and all I can do is live my life and if I happen to have another serious medical issue, hope that its caught early also. By all rights, I probably should have died back in 2005 when I had my heart attack so every day since then is gravy. I actually think if anything is going to get me, it will be a stroke or heart problems. I have plenty of hope and won't embrace death, but if I'm ever in a palliative position, I'll know when to fold my cards and I won't put myself through any treatments where the risk/reward ratio isn't to my benefit.

I've always been able to absorb and learn new computer technologies and have had plenty of time to research and learn as much as I can about maladies now that I believe in patient empowerment. I look at it that if I'm every caught with a bad outcome, I want to be the one responsible and not the doctor. Doctors can walk away when all is said and done, I can't. I'm not trying to be a doctor but I have to be in full agreement with the plan of action they suggest. I think that learning as much as I can has been an asset although I know it probably annoys my providers. I'm not one to put my head in the sand and I believe in general, the younger the person is the more they are going to investigate and learn about their medical conditions when they are diagnosed with a serious condition. I also read a few medical professional blogs on the web and am amazed what really is going through their heads when they are treating patients, this is probably too much information for me but I like to see a view from the other side of the table. My priorities have changed since my diagnosis of cancer. Issues that were important to me in the past mean nothing now. I believe I'm continually learning and more flexible in my thinking now although I do believe many issues are black and white. I run many an issue through my core team just to make sure I'm not loosing my sanity. One of the things I do is that I continually analyze and reaccess my experiences.

I know there was a period of time that I wasn't very functional and was very emotional. I know I'm back now and have a ton of confidence. I just march to my own beat.

 

I had an appointment this past Friday at Geisinger Medical Center in Danville for genetic counseling. It was suggested by Johns Hopkins that I go for genetic testing for VHL.

The first thing that I did was enjoy a nice lunch at the Pine Barn Inn. Great lunch and I love the coffee. I'm back to being a coffee freak. I do decaf but I sneak a regular cup of joe in there sometimes.

I first met with the genetic counselor who verified my family history of cancer. I'm glad I didn't have to fill out tons of forms like I did at Johns Hopkins.  She asked how much research I did on the subject. I told her that I am well versed regarding VHL and all the implied issues of getting tested and ramifications if one tests positive.
 
One fact that I discovered during my research into my family history of cancer was that my maternal grandfather had colon cancer. I had always known he died of metastatic prostate cancer but was unaware of the colon cancer until I asked my mother. I guess that puts me in a higher risk category and I know what the recommendations are for that. I meant to tell my PCP last week but I'll include that information when I send him my blood glucose numbers next week and I'll go with his recommendation if I need testing or not.

I personally think I don't have VHL but who knows. Usually to get a diagnosis of VHL there are two columns of diseases. You have to have one in each column. I have two from column B but none from column A. I had an eye exam a few months back that was clear which eliminates one of the diseases from column A. That basically leaves a brain tumor as the only disease left in column A. Although some would disagree, I have no symptoms like blurry vision, dizziness or balance issues to suggest a brain tumor.

I then met the oncologist who is the director of the cancer institute. One of the first questions he asks me is how I'm recovering from the distal I just had at Hopkins. He also asked who my surgeon was. I told him and he mentioned that he works with my surgeons father. We both agree that my surgeon is an great person and excellent surgeon. We go over my family cancer history and there is not much evidence of cancer in my family tree.  He goes on to say that the probability of me having VHL is minimal. Of course I'm pleased to hear that. He also suggests that I get tested just to be sure. I personally only see an upside to get tested. If I test negative, thats good news. If I test positive, it would probably mean more frequent scanning. 

I'd have to say this doctor is one of the most accommodating and pleasant people I've met since I became what seems to be a professional patient (LOL).  I did take the opportunity to ask about the sub centimeter pretracheal node and was pointed in the right direction about a plan of action and in getting an opinion.  Follow up for my distal was briefly mentioned.  I know I asked the surgeon if this was a cut out and forget about it type follow up but I'm not sure what his reply was so of course I'll get his opinion in a few weeks.

Next step is to get approval from my insurance company for the lab work.  Once that is done, blood will be drawn and it takes about 4 weeks to get results. Since I will be taking a well deserved extended vacation in a few weeks, we tentively discussed setting up  an appointment in December to reveal the results since I'll probably be in Danville then for my renal cell follow up. The doctor and counselor also come to Scenery Park so that can be an option also. I don't get anxious about waiting for results so I have no problem waiting until December. 

My opinion on radiologists has changed. I don't think they get the respect they deserve. I still can't evaluate their abilities but as many patients learn, its best to get the radiologists report after undergoing a scan.

Surgeons have to be able to read the scans to make their own diagnosis and thats a given. I don't believe all surgeons read the radiologists report. I know I wouldn't want to be influenced by somebody elses opinion if I was working on a problem.  I'm pretty sure the first two urologists didn't read the radiologist report of my first scan in December 2007, otherwise they probably would of told me about the mass on my spleen, or at least I would hope they would have. I can understand why they didn't see the mass because it wasn't on an organ in their specialty so they weren't looking for it. I don't know if they are supposed to read the reports or not but I sure am glad I learned quickly to get and read the reports. Otherwise, where would I be in 10 years based on the chain of events that happened when I went for evaluation and treatment of the splenic mass.

I had another series of CT Scans when I went for a second opinion at Johns Hopkins.  I read the radiologist reports and two new impressions caught my attention.

The first impression that caught my eye was the first time a lesion on my left kidney was described as anything other than a simple cyst.  The radiologists impression  was indeterminate but stated that the lesion measured denser than a simple cyst but likely represents a complex renal cyst. Obviously, follow up was suggested.  I know the differences and implications between a simple and complex renal cyst. I checked all my reports and the lesion hasn't grown since my first scan. It actually measured negligibly larger but within tolerances of being measured on different machines and different modalities.  Am I concerned? No. I know I have an appointment coming up with my urologist shortly and he is the best person to give me an opinion. 

The second impression that caught my eye was from the chest ct scan I had. It mentioned of a sub centimeter pretracheal node measuring 1.0 x 0.6 cm. The only thing I did was go back to my previous chest ct scan reports to see if this was mentioned.  It was not. I know that doesn't mean it wasn't there, it just means it wasn't seen and noted. When I looked at my old reports, and these were reports from ct scans when I was in the hospital recovering from cryoablation surgery, there were some interesting notes but nothing was mentioned as significant.  About all I know is where the pretracheal node is located and that is fine for now. I like to research my maladies but until I get an opinion from a doctor I'm not going to do any research and I'm not about to try and diagnose myself. 

I obviously knew about these in August but I have my priorities. I can't do anything until I have finished recovering from my distal pancreatomy. I must say that is been three weeks since my surgery and I feel great. I'm back to my full aerobic exercise routine at the gym, I'm eating with no problems other than if I eat too much, I just feel a little more bloated than I used to before the surgery. I'm still working with my PCP regarding my blood sugar and I know eventually we'll get it under control.

When I attended the Pancreatic Multidisciplinary Clinic at Hopkins, one of the fulfillment requirements was that my primary care physician was to receive a copy of all my reports and my proposed plan of action.  I don't know if he ever received one but Johns Hopkins sent a copy to the gastroenterologist who incidentally discovered my tumor. I believe they carbon copied him since his letter to me was part of the medical records I sent to the clinic.   

The gastroenterologist sent me a note explaining who he was and that he would be interested in any follow up I would provide to him.  I let him know he could call me anytime to discuss. He had responded that he would call when the opportunity presented itself. 

My plans moved a little quicker than I expected and by the time I left for Hopkins, we hadn't chatted. I keep this blog and decided to send him the link. 

We exchanged a few messages and one interesting fact was obvious. We had different memories of the consult after the procedure.

When I received his letter in the mail stating that the mass on my pancreas was a neuroendocrine tumor, I was very surprised but at the same time I wasn't shocked either.

I really never thought about the letter too hard until after my conversations with the gastroenterologist.

The only thing I really thought about was how to deal with the medical issue.

I just reread the reports. It was all there in black and white. How ironic that I watched and EUS with FNA of the pancreas on  www.or-live.com I like to know about the procedures I undergo. It was like reading a report of the procedure I viewed except with different results. I knew who would be involved in the procedure including a cytologist to create slides and do preliminary stains. I knew about the different types of scopes and how they retrieve the samples. I knew about the doppler imaging to make sure no veins or arteries would be in the way of the needle path. I also knew about the risks involved and I also knew I was in good hands as the doctors in the video explained the advanced training required to perform such a procedure. I also knew the doctor was well qualified. I also knew this doctor was the general surgeons go to endo guy. From my limited knowledge of doctor/doctor relationships, that was a great reference. 
 
I hate to admit it but I didn't even realize that a FNA of my pancreas was done until I got the reports in my hand. When I heard the word hemangioma during the consult, I just assumed the doctor could identify that type of lesion by its visual characteristics since it was stated in the video I watched that EUS was the best modality for identifying lesions in the gastrointestinal trac. I also knew from previous opinions that hemangiomas were nothing to worry about.

I'm not blind to the fact that doctors don't give out a diagnosis until they have final test results to back them up.
I know the report uses the word suspicious and I'm not sure of exactly what preliminary stains they use but obviously they weren't enough to confirm the suspicion. This is one of those gray areas for me. If its good enough to write that down in a medical report and enter that into my medical record, is it good enough to tell me about it?

One thing I've learned throughout my experience is that medicine is anything but a black and white proposition.  Its more a combination of art form and science with many gray areas. I swear I've never heard so many adjectives like probably, likely etc.... used in one sentence. Its like chatting with a politician or getting a diagnosis with a built in out. I must admit that I still see plenty of issues in black and white but I'm continually adapting and learning the ropes so to say.

I know there is nothing the doctor could say to convince me or my advocate that he mentioned the neuroendocrine tumor and there is nothing I could say to him to convince him that he didn't mention the neuroendocrine tumor. That alone makes it a non-issue and unimportant to me.

I then asked myself what all of this meant to me.   I actually enjoyed exchanging opinions with the gastroenterologist. He is one of a handfull of doctors I know that takes an interest when he really doesn't have to. There is another intangible quality that I like about him and he is aware of what that is. From my view, it doesn't matter what either of our perceptions were from the consult.  I also had a very positive experience with the staff of the endoscopy department and I tolerated the procedure pretty well with no complications. I wouldn't hesitiate to have another endoscopic procedure done by him and better communcation if there is a next time won't hurt either of us.  I learn like everyone else and I'll be better prepared in the future.  When the final pathology came out, he notified me promptly and thats all that really matters to me.  A few days of not knowing doesn't mean much to me or anything to my bottom line. I don't know, maybe it was a good thing that I wasn't aware of the tumor before the final pathology. I'm not the worrying type and I've stated this before but nothing will shock me anymore and believe me, nothing will.

I never mentioned this little tidbit of information but I have mentioned (not in full disclosure) how I received my diagnosis of kidney cancer. I knew I had a tumor and a possibility was kidney cancer from the doctors in the emergency room of the hospital I visited when I first experienced gross hematuria. The urologist I saw mentioned tumor during my consult and possible treatments but never mentioned kidney cancer until  I was handed an order for a ct scan and asked if I knew what 189.0 meant. I obviously didn't know what 189.0 meant at the time but believe me, I know what a lot of billing diagnosis codes are now and  I never revealed that this was done while I was paying my co-pay at the receptionists desk.  Somehow, and I mean this in sarcastic way and in a humorous way,  a letter seems to be a big step up from that experience. I seem to be Mr. Incidental but also have plenty of Mr. Inappropriate in me also.

One thing I will never do is give up. I pick myself up and go onto the next issue. I haven't lost the ability to trust yet and I don't think I ever will. I had a couple of Kelley Green ribbons made for my car. Kelley green is the color for Kidney Cancer Awareness. One reads "Kidney Cancer Survivor". The other reads "Hope" and "No Fear".
 

I had an appointment today with my primary care physician.  We went over my blood glucose levels for the past week and he upped my insulin dosage. We also discussed some other strategies that he might use to help control my diabetes. I also had labs done for insulin and c-peptide last week and he explained what the results meant.

I also had some medical records from Johns Hopkins for him to scan into my electronic medical record. He also asked when my follow up appointment was at Hopkins and wanted to know what follow up protocols and strategies were discussed. I briefly spoke with the surgeon about follow up and while he offered to be available to read my scans,  I really don't know yet what the protocol is but we did discuss piggybacking on the MRI's I receive as follow up for my renal cell carcinoma.  I also told him about my next door neighbor and uncle who also have neuroendocrine tumors and their follow up protocols. My next door neighbor sees an oncologist at Scenery Park that came highly recommended from Dr. Cameron at Hopkins (or so I am told by my next door neighbor).  He was surprised that three people in two houses less than 50 yards apart all have neuroendocrine tumors. I told him that it is Pennsylvania's version of Love Canal.
 
I'm very happy with the working relationship I have with him. He is very easy to talk to now and I know he is very meticulous and I know he has my best interests at heart. My relationship with his nurse has also gotten better after a little heart to heart during my last visit.  I wasn't even close to what I'm capable of but my office visit after my lithotripsy procedure wasn't pleasant for anybody involved. The nurse had even sent me a note that she hoped I would come in for my next scheduled visit. I think she was surprised when I told her I was very happy with everybody. Relationships aren't always going to be "peachy keen" and I told her I have a short memory especially when I know they are acting in my best interests. My switch to him was probably one of my best decisions that  I've made since my diagnosis of renal cell carcinoma.

It's 2008 and the Internet is pretty much used by almost everyone on a daily basis.

The Internet can be a good place to research your medical conditions if you know how to use the resource.

When I was first diagnosed with kidney cancer, I did what most people with a computer did, I hit the Internet looking for information. I was not in the correct frame of mind to do this and found many a story with a bad ending. I fell into the trap of assuming the worse and had myself convinced that my prognosis was not good. When I got shocked back into reality by my first urologist, I started to research properly.

I was the typical male who really didn't take an interest in my health status and trusted my primary care doctor to cover all the bases for me. I realized very quickly that approach was not in my best interest and that the only one who should be calling the shots is me. I quickly became a believer in patient empowerment.

It didn't take me long to figure out there were different treatment options for kidney cancer. My research also told me to find a urologist who specialized in kidney cancer. It also wasn't tough to figure out that not all urologists specialize in kidney cancer and those that do, might not offer every possible option because they are not trained in that specialty.

Until recently, the "gold standard" for kidney cancer was radical nephrectomy. The reality of the situation is that not all urologists are trained or have the skills to offer a solution other than a radical nephrectomy. Lets face it, patients are dealing with the stress of hearing the word "cancer" and may not be operating at full mental capacity. Their first instinct is to get that cancer out of them as fast as they can.  I know I was very emotional in the beginning and it took me a while to process all the information correctly. The sad reality is that many patients are not aware or educate themselves about all the possible treatments for kidney cancer. The end result is that some patients will end up with a radical nephrectomy because they don't know about and investigate other treatment options. They also won't seek a second opinion and will follow their physcian blindly. Many will end up with a radical nephrectomy because the urologist they are seeing will only offer them a radical nephrectomy because they still believe that is still the "gold standard".

Experience counts. Another lesson I learned quickly was that experience counts. I believe its fair to assume that the more times a surgeon performs a procedure, the better they will be at it. I also believe the more experience a surgeon has with a disease, the better they are in dealing with patients with the disease. If they have years of experience, you can probably be sure that they have seen almost every type of patient presentation there could be. I know I saw a difference between the two urologists I had seen only because I knew one had 20 plus years in dealing with kidney cancer and the other didn't.

Internet Chat Boards. There are many chat rooms and discussion boards for virtually every type of disease. I believe these boards have value because they let patients with the same disease offer emotional support for each other. These boards also let patients who are in the advanced stages of disease compare treatment protocols and offer possible solutions in dealing with the many side effects of radiation therapy and chemotherapy. Other than that, I'd take any medical advice from a chat board with a grain of salt. There are exceptions to that rule as I know of one doctor who is considered a leading expert in carcinoids who regularly answers medical questions and offers support to patients (and stresses at the same time, how important it to see their own doctor) via a Internet mailing list.

Not the experience you want. I know I got better at researching a medical issue as I got diagnosed. Its not the experience you want to acquire but one has to learn how to deal with a serious medical issue. I felt tons of pressure during my dealing with kidney cancer but dealt with the neuroendocrine tumor with virtually no pressure.

When I received the letter stating that I had a neuroendocrine tumor, the first thing I did was hit the Internet for information. These tumors are considered rare and there is not much information out there. My preferred method for searching for information is Google Scholar and Pubmed. I also used the Johns Hopkins Pancreatic Cancer Website and Discussion Board for reference. I also browsed the websites of leading hospitals that dealt with pancreatic cancer as well as support organizations like PanCan and Pancreatica.org. 

One thing I do is research every doctor I see. I like to know where they went to school, how long they have been out of school, where they did there residency, if they did any special training or fellowships and if they are board certified. I also search pubmed to find out what interests they have if any. The hospitals where they work usually have a website with physician profiles also.

While I wasn't to thrilled with my first general surgeons beside manner, I was satisfied with all the tests and options he offered me. My mother is a retired operating room nurse and one piece of information she had given me was that some surgeons have the worse bedside manner and personality but they might also have the best hands when it comes to performing surgery. I also knew he was previously associated with a hospital with an excellent reputation in dealing with pancreatic tumors and cancer before I asked him for his opinion regarding the neuroendocrine tumor finding so I knew he had experience. For me, it came down to me not agreeing with his opinion and also the fact that I won't follow anybody blindly when they don't answer my questions. I just didn't have the comfort level I needed to continue under his care because I wasn't on the same page as him.

I had researched pubmed and didn't find many cases that were watched, I actually only found one. When I finally got my hands on the report from the EUS FNA, my tumor was measured at 1cm and in the pancreatic tail. I found cases on pubmed where resection was performed on tumors that were half that size. I also used the National Cancer Institute Guidelines as a reference that recommends surgical resection for neuroendocrine tumors bigger than 1cm.

Part of the first general surgeons opinion what that I was a candidate to have the procedure done laparoscopically and that my tumor was less than 2cm. I don't assume anything as I didn't have the EUS FNA report yet but I figured the tumor was obviously less than 2cm and in the tail of my pancreas. That meant distal pancreatomy.

I did the same thing I did with my kidney cancer. I used the opinion of the first surgeon I saw to research a recomendation of laparoscopic distal pancreatomy. Let me tell you, neuroendocrine tumors are as rare as they say because I found hardly any patients who had a distal pancreatomy.

I again used part of the first general surgeons opinion where he stated he didn't think my tumor was malignant. I researched pubmed and was happy to realize that I was a candidate for a laparoscopic procedure because my tumor was probably benign. I also searched the pancreatic discussion board and Johns Hopkins and found a few references of patients who had the procedure laparoscopically (one didn't have a good outcome and stated they wished they had an open procedure) and other board members who posted there opinion that they wouldn't have any procedure done laparoscopically only for the fact that the pancreas was being operated on. I on the other hand embrace new technology and procedures and if there was a chance to have this procedure done laparoscopically, I wouldn't hesitate. I researched pubmed and found a few studies, one being a study of 46 patients from Brisbane, Austrailia who had laparoscopic distal pancreatomy performed. It was clear to me that the risks and complications were close to being as equal or better for the patient for an laparoscopic procedure versus an open.

While I've never had an open procedure performed and hope I never do, I was a caregiver for my best friend who had an open procedure performed and saw what he went through in terms of pain and recovery time from the open procedure. I had undergone a laparoscopic procedure for my kidney cancer and was pleasantly suprised how fast I recovered from the laparoscopic procedure. If I had the option for laparoscopic surgery, I wouldn't hesitate for a minute.

I had already picked out Johns Hopkins as the place I would go for a second opinion based on their being a high volume institution for pancreatic cancer and tumors. I knew that meant they do a ton of whipples but figured it was still the place to go for a distal. When I called the nurse coordinator of the Pancreas Multidisciplinary Clinic I asked about the clinic and also about a direct referral to a surgeon. She gave me the option of both and explained how my case would be reviewed by a team of experts in dealing with pancreatic tumors and cancers. Even though I had a surgeon picked out, I figured I couldn't go wrong with a team of doctors reviewing my case.

I had reviewed the profiles of the surgeons on the Pancreas Multidisciplinary Clinics website and zeroed in on one surgeon whose specialty included minimally invasive surgery which meant laparoscopic. His profile also mentioned he completed advanced training in pancreatic surgery with Dr. Cameron who happens to have a great reputation among patients for his ability to perform the whipple procedure. If I had decided to bypass the clinic, I would have requested an appointment with that surgeon.

One side story is that my next door neighbor also had surgery to resect a neuroendocrine tumor approximately 4 years ago. I know, what are the odds of a neighbor having the same type of rare tumor. His tumor was located in the head of the pancreas and he went to Johns Hopkins to have the whipple done. His surgeon was Dr. Cameron who has the experience of performing many a whipple procedure. My friend and neighbors lifemate can talk your ear off. She told me a story where she had a bunch of questions to ask Dr. Cameron. Dr. Cameron came in the exam room, told them exactly what was going to happen, which included a good prognosis, and ended up leaving before she could ask her questions. If that maneuver could install enough confidence to keep her quiet (you have to know her), thats all I would ever need to know about Dr. Cameron.

As it turns out, I was assigned the surgeon who I had zeroed in on if I had bypassed the clinic. I knew all I needed to know and had no doubt in my mind when he came into the exam room with a recommendation of surgery. There is still the fact that you either will trust or not trust someone and that is very instinctive. Preperation and doing your homework can only help making that decision of trust.  I have to admit I was still a little surprised for the recommendation for the surgery only because the physician who did my history and physical was very convincing when she mentioned that they would probably recommend a watch and wait approach.

When patients find out they have cancer or tumor, many will rush to have surgery to get it out of their body as fast as they can. That can lead to poor choices regarding their providers and lead to bad outcomes. I take the approach of finding out all I can about the disease and then find a provider that has a ton of experience with my disease. I'm responsible for my own care and I try to put myself in the best position for a positive outcome. I know if I do that, I can live with the outcome, good or bad, with no regrets or second guessing.

You can call this the diary of a madman but I use the Internet and do my homework when it comes to my medical care. I believe I've used the resources provided by the Internet effectively. Of course, if I run into a roadblock or have a question, I write it down and ask my medical provider.

I started my cardio workouts again. Its been a few weeks since I worked out so I only did half my routine.  I had no problems going full speed on the eliptical trainer and then did a session on the treadmill. I'm adding 2 1/2 minutes to each session to get back to my normal routine which is approximately 1 hour, 4-5 days a week.  I still have a weight lifting restriction so it will be a few more weeks before I start hitting the weights.

I feel good enough to play golf and even though the surgeon told me 2 weeks, I felt the risk/reward just wasn't in my favor to go out and play golf now. I can wait a couple of weeks when I'm in Florida (where its a wee bit warmer) and then let it all hang out.

Tomorrow will be two weeks since I had the surgery at Johns Hopkins.  I must say that I'm feeling quite normal. I lost 15 pounds when I got home from the hospital because I just couldn't eat anything. I would take two or three bites and I would be full.  Then, out of the blue, everything just started working and I was able to eat a full meal at the beginning of this week. My appetite is back and I have no problem eating and tolerating anything. The only thing that makes my stomach feel funny is if I drink a carbonated beverage. I'm back to having decaf coffee in the morning. Its more that I need a change of pace from water versus me having the coffee bug back where I would have no problem finishing off a pot of coffee in the morning.  My back problems disappered after a few nights in my own bed and I'm sleeping well at night. I don't really get fatigued in the afternoon but I do get a little tired. I go the the gym every morning and do my 30 minutes of treadmill at a fast pace and go for my walks around the neighborhood the rest of the day. The eliptical trainer at the gym is calling my name but I'll give that a try next week.

My blood sugar has been out of whack as expected. I took my first insulin shot this morning and have a follow up with my primary care next week for him to view my numbers and make any adjustments.  I've read some patient experiences where they are insulin dependent for a few months before everything comes back to normal. I knew the possibility that I could become insulin dependent and it is what it is.

Perspective. I look at my own medical condition and my health status isn't so bad considering how bad it could have been. One item that puts things into perspective is the other patients you meet along the way.  When I was at Geisinger recovering from my cryoablation surgery, my room mate was recovering from a stem cell transplant.  He was late 30's and I knew enough that stem cell is basically a last ditch effort and that his prognosis was not good.  When I was up and walking at Hopkins, you meet other patients in the hall, you talk and share experiences. One woman was there for her 16th procedure. I'm tough but she must be one tough son of a bitch as she seemed to be in great spirits and tolerating her experience pretty well. I met and chatted for a while with another women who had just spent 11 days in intensive care recovering from the whipple procedure. She was in great spirits but her case was the classic example of how pancreatic cancer goes undetected for such a long time because its symptoms mimic so many other possible diagnoses. She had spent months with her primary care physician trying to figure out her problems but still felt off. Years ago, she was treated at Hopkins for another reason and called that doctor and explained her situation. She got pointed in the right direction and her pancreatic cancer was diagnosed and she was a candidate for surgery.  I wished her the best as she was scheduled to start chemotherapy in about five weeks.

I left Baltimore yesterday and arrived home around 2:00pm. First item on my agenda was to visit my friend and neighbor who has been taking care of my english springer spaniel, Sydney. As it turns out, Sydney was on her lead outside and started talking when she heard me talking to my friend.  I went around to the backyard and received kisses for the next 10 minutes and she got her belly rubbed.  I asked my friends if they wouldn't mind keeping her a couple more days until I get a chance to recharge a little.

The trip has tired me out a little and all I want to do is rest in my lazy boy. Bruce and I ate dinner around 6:30pm and I went to bed right after dinner, I was that tired. I woke up around 6 hours later but did manage to catch a few more hours sleep.

I'm surprised that I'm feeling so well after the surgery. I know I still have a couple of months before my digestive system gets back to normal but even that isn't as bad as expected. I really don't have a big appetite and my portions are about half of what I'm used to consuming. I'm not as nauseous as I thought I would be either.  I have lost the taste for coffee and diet soda so I'm drinking more water which is better for me anyway. About the only item I have a craving for is apple pie ala mode but I'm not going to touch any sweets until my PCP gets the results of my blood sugar testing next week. Based on what my numbers have been so far, the devil in me is calculating how many units of insulin will I need if I eat that, I know, not the right way to approach it but I'm human.

I'm doing my walking and even went to the gym this morning and did 30 minutes on the treadmill. Nothing more than a brisk level walk as it was more comfortable for me to do it inside as it was a little chilly this morning.  I like the elliptical trainers but won't attempt those for at least another 10 days. I figure if I was given the ok to play golf after two weeks, I can try do some elliptical training also.

I've basically been a couch potato all day today if I haven't been out walking. I did get some get well cards, with the best being from a couple of women from my brokers office. Lets just say they offered some extra value services. I called both of them and we had a good laugh.

I did call the surgeons office and received a follow up visit for early next month. I'll basically get my final pathology report.

I also received a call today from the Cancer Institute Genetic Program at Geisinger. I explained that my insurance does not cover genetic testing and that I was going to have my PCP draw some blood and send it off for testing at the lab at Johns Hopkins. I was told that they were able to receive clearance from my health insurance for genetic testing for at least 3 people for VHL this month alone. I told them if they could do that for me, I would be there. We made an appointment for later this month which I will keep if they can get the approval from my insurance company.

I was very pleased that I was discharged today from the hospital.  I finally left around 3:00pm. I'm staying at a local Holiday Inn Express and plan to make the trip back to State College tomorrow if everything looks well in the morning.  I'm very tired from my lack of sleep in the hospital. The bed  and the chairs in my room did not do my back any favors. I walked around the hotel for a while to try and loosen up my back and was a little successful. I even got on the treadmill (no, I didn't do anything close to what I do when I workout) for 10 minutes. I slept for the rest of the time and awoke when my mother and Bruce returned from dinner around 9:00pm.  They brought back some food and I'm taking it easy and ate a 1/2 plain hamburger and about a 1/3 of a bowl of salad. I was full.

I was very pleased with my stay at Johns Hopkins. The nursing staff and assistants were top quality professionals that were easy to work with. The residents were great but my favorite  was one of the "regular guys", the physicians assistant who was assigned my case. He ended up pulling out my drain this morning and it wasn't was bad as I thought it be.

I received discharge instructions to make an appointment for 1 week with the surgeon and I have to contact my PCP regarding controlling my sugar levels. My tumor was in the endocrine part of the pancreas to which one of its functions is to produce insulin to control blood sugar. My ability to produce insulin might be temporarily or permanently impaired because of my procedure. I was already a type II diabetic before my procedure.  I wouldn't be surprised  if I became insulin dependent and I would make that trade off anytime. 

All in all, I'm very pleased with my short stay at Hopkins. My compliments to the entire staff.

I rang the call button for the nurse around 1:30 pm. I was feeling flush and my heart was racing.  My oxygen saturation rate dropped to 88. They don't waste time around here. The nurse took an EKG and called the staff. My room was full of medical  professionals within minutes. They read my EKG and ruled out any abnormality. They drew some blood for some studies and ordered a ct scan to rule out pulimanary embolism. The intial read from radiology was no PE. Some of the blood studies were not back yet but I was told nothing stood out. I was told to stay in my room for now. I'm just glad I can sit in a chair because my back is starting to bother me from what I think is a result of laying in bed.

I know I'm in the right place and appreciate their fast response times.

I just hope the rest of my recovery goes smoothly!!!!!!!

I never thought that taking a shower could be physically draining. I was totally drained and wanted to go right to sleep after taking my shower late yesterday afternoon. My dinner tray came at 4:30pm. I'm still on a clear liquid diet. Let me tell you, the only thing worse than sugar free lemon jello is regular strawberry jello, especially since I switched to sugar free jello years ago. It was like eating pure sugar, not pleasant.  In the past, when I've been in the hospital and hungry, I'd eat anything even if it tasted bad.  I passed on dinner last night. The only thing worse than regular strawberry jello is the sugar free lime jello I asked for this morning. I did eat more this morning and as I am writing this, my lunch tray arrived and its solid food. Last night I went through 3 gowns in the matter of 2 hours and a bunch of pillow cases. They were soaked with sweat.  My drain was also leaking onto my gown and sheets. I told the staff and they placed a bandage on around the drain. By the time the evening nurse came around to take my vitals, I had the chills and couldn't stop shaking. This seems to be par for the course for me but as long as my high temperature continues to drop, I don't have any concerns. I felt pretty good this morning when the doctors came to visit. I was told that I would possibly be released tomorrow so I'm happy about that. I also questioned the lead doctor about my pneumonia vaccination that I received on 8/25 from my PCP. He was going to call my PCP to verify. As it stands now, I'll need two other vaccinations since I no longer have a spleen. I've already done my homework on those issues and am not concerned about living without a spleen. I had a visitor this morning. My friend Don (pictured) came by for a short visit to say hello and was surprised that I was looking so well. I met Don via my blog as we are both RCC survivors. I went for a long trip around the hospital and even went outside this morning. It felt great to get outside but I did feel a little fatigued afterwards. I just finished my solid food lunch. I ate slowly and didn't eat everything. So far I don't have any nausea but I figure there is a good chance of it since everyone has mentioned that I shouldn't be in a rush for solid food. I know I just had surgery and it takes a while for the pancreas to "bounce back" but I figure, in for a penny, in for a pound.

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My temperature was high early this morning and they took blood cultures and a chest x-ray this morning. Today was an up and down day. I didn't get much sleep last night and was on my way out my rooms door to go for a walk when the residents showed up. They removed the bandages to reveal streri-strips that will eventually fall off over time.  I have 5 more trocars incisions and they feel like they have been sealed with glue.  I was put on a clear liquid diet and had some  chicken broth for breakfast this morning along with some apple juice. For lunch I had only a tiny portion of an italian ice  before I got sick to my stomach. I asked and received some medication for nausea. I've been experiencing alternating chills and sweats. My last reading was 102 degrees. One of the doctors was in the room for that reading and I was told to use the spriometer. I've been very diligent in using the spirometer and I don't want to experience Atelectasis again. I was told I could take a shower but wanted to wait until I felt halfway decent.

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I'm doing lots of walking and using my spirometer alot. I'm very pleased that I'm feeling so good physically and of course mentally. I'm still running a temperature but I did the same thing after my renal cryoablation surgery. I ran into complications after my renal cryoablation surgery because I was dehydrated. I made sure I hydrated plenty before I reported for surgery this time.

Talk to you tomorrow!!!!!!!

My doctors came in this morning to give me the once over. I was happy they took out the NG tube, moved my diet up to ice chips and gave the ok to get up and start walking. The doctor mentioned I would be getting a few vaccination shots since I no longer have a spleen.  I'm using the spirometer frequently because I don't want to experience Atelectasis again. I knew from past experience that I would probably be nauseous when I switched to ice chips and got up out of bed for the first time. I asked the nurse for the nausea medicine before I attempted to get up.  I was sort of drained this morning and all I wanted to do was sleep. I did go for a lap around the floor and the more steps I took, the better I felt. I can't say enough good things about the staff here. They are treating me very well just like the nurses at Geisinger did.

I'm now sitting up in a recliner and still have not experienced any episodes of intense pain.

About the only thing I'm not looking forward to is a clear diet. I HATE LEMON JELLO!!!!!!

Its a little after midnight and I just made it to my room. Its been a long day!!!!!! I'm  very pleased with the outcome of my surgery. I'm also feeling pretty good right now and am in no pain. I was originally scheduled for a spleen preserving distal pancreatomy. Circumstances dictated that my spleen had to come out also. I'm not disappointed in the least as I know the surgeon made the correct call. I was told that he even consulted with another surgeon before removing my spleen.

I woke up in recovery and slept on an off for a few hours. I had some complications which kept me in recovery until midnight. My calcium level was low and I was experiencing an irregular and rapid heartbeat. I was sure glad to finally get to my room (they are all private) as recovery is quite a busy and noisy place.

I haven't experienced any pain yet. I have a high tolerance to begin with but learned its best to stay ahead of the pain by using the pain pump.

I've got a catheter (glad this time around) a drain and a tube down my nose and into my stomach.  They don't bother me at all and I am quite comfortable.

So far, so good. The staff at Johns Hopkins have been very pleasant to work with.

I'll update more tomorrow as I am a little tired.

I AM VERY HAPPY WITH JOHNS HOPKINS AND MY SURGEON!!!!!

Its 4:30am and just like the night before my kidney cryoablation surgery, I got a good nights rest and I splept like a baby.

This is the easy part for me. I'll be leaving in about a half hour to check in for my surgery. This has been a different type of experience for me since I didn't have to immediately put my trust entirely on the shoulders of one person. The clinic allowed me to get comfortable with Johns Hopkins and all the possible people involved and eased me into meeting the surgeon. Before I even attended the clinic, I had a comfort level with all the surgeons since they were all listed on the clinic site and I was able to see their credentials and view their interests online. I spent alot of time reading all the studies they each had published on pubmed to get a feel for what they were like. I have all the faith I need in my surgeon which makes it easy to walk the last mile.

Thanks to all who helped me!!!!

Hope to post again real soon with my status.

For those of you who have my cell phone number, don't be afraid to call, my mother will be answering my phone for a while.

I had an endoscopy procedure today at Johns Hopkins in preparation for my distal pancreatomy (oh, forgot spleen per serving, I hope, it seems to have a mind of its own as it doesn't want to get cut out). Everything went like clockwork as the tumor was localized and tattooed.  The gastronenterologist was very approachable and staff treated me well and were pleasant to work with. The gastroenterologist answered my questions as I  tend to go research every procedure I undergo thoroughly. I had asked about the different types of dye and the possible side effects. He knew his craft as he stated possible complications and also the probability percentages of those complications. He was a man after my own heart. One item I liked about this procedure was the different type of anesthesia used as compared to my last procedure. They used a short lasting sedative called propofol. I awoke about 45 minutes after I was sedated and it was like I had a short nap. I was happy since the last time I was very sleepy and not all there mentally. Just as with my last procedure, no pain, no sore throat or upset stomach.  I'd say it was a success as the tumor needed to be localized and tattooed for tomorrows surgery. I have to report at 5:30am. I'm staying at a local hotel about 3 miles away and I've already ordered a cab for 5:00am tomorrow. As luck would have it, I ran into Nurse Coleman from the Pancreatic Multidisciplinary clinic in the corridor and had a very pleasant 15-20 minute conversation. On a side note, my PCP asked me for an opinion on the gastroenterologist that did my procedure at Geisinger. While I was disappointed that I wasn't told about the mass after the procedure, he did follow up with me and I was very satisfied that I benefited from his experience and training and told my PCP I wouldn't hesitate to use him if I ever needed another endoscopy procedure at Geisinger. So far, so good. My goal was to put myself in the best position possible for a positive outcome. I believe I have accomplished that in traveling to Johns Hopkins.

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I received an appointment for Thursday, September 4th to have a endoscopy procedure at Johns Hopkins in Baltimore. The gastroenterologist will localize the tumor and tattoo the lesion. Tattooing the tumor (injecting dye into the tumor) may shorten my surgical procedure time and  make it easier for the surgeon to locate the tumor since it should eliminate the need to find the tumor by feeling for it or to find it by the use of ultrasound.

I was told at the pancreatic clinic that the surgeon would like to operate within 2 days of the endoscopy procedure, assuming the gastroenterologist was successful in localizing and tattooing the tumor.  I am scheduled for spleen preserving distal pancreatomy on Friday, September 5th.

I was also told that I would receive an appointment for pre-op education and that will most likely be on Wednesday, September 3rd.

My plans right now are to leave Wednesday for Baltimore.


 

I had a regularly scheduled appointment with my primary care physician yesterday. I was pleasantly surprised that my lab results were good only because my diet for the past six weeks was a little less than optimum. My cholesterol numbers were on target and my LDL was sub 60 (my target is below 70) for the second time in four months so I requested a reduction in dosage of Zocor which was granted.  My only abnormal result was low triglycerides and was told not to worry about that.  I was due for and  received a Pneumococcal Vaccine (Pneumonia) as well as a Tetanus vaccine injections.

We discussed the outcome of my attending the Johns Hopkins Pancreas Multidisciplinary Clinic.  One of the items mentioned to me at the clinic was the issue of genetic testing for von Hippel-Lindau (VHL).   VHL is basically a mutation of the VHL gene, which causes tumors to form in areas of the body that contain large numbers of blood vessels. I happen to have two types of tumors which are found in patients with VHL, clear cell type renal cell carcinoma and islet cell tumor. Just because I have these two types of tumors, doesn't mean I have VHL and having VHL doesn't mean you will develop tumors either. My family does not have a history of VHL. The only reason I'm considering genetic testing for VHL is that it could have an impact on the follow up protocols for my current maladies. I received a referral for genetic testing if I want to proceed with that and I also received all the referrals I needed to have the endoscopy procedure and spleen sparing distal pancreatomy at Johns Hopkins.

I am very pleased and fortunate to have this doctor and his team handling my primary care.  It definitely feels that I have somebody looking out for my best interests.

I've decided to add video to my blog. If all goes well regarding some upcoming diagnostic tests,  I'll be scheduled  to have a spleen preserving distal pancreatomy at Johns Hopkins Hospital in Baltimore, Maryland. There isn't much information on this type of surgery on the internet, patient experiences or the surgery itself. I had previously watched multiple surgeries on or-live.com but they don't have a distal pancreatomy in the archives.

When I had my kidney cryoablation surgery, I asked my sister to update my blog for me. That didn't work out as anticipated so I've decided to take my laptop with me this time.  If they have Internet Access (I might just subscribe or rent a wireless broadband device for my laptop if they don't), I will update my blog while I'm in the hospital.

I attended the Pancreas Multidisciplinary Clinic at Johns Hopkins in Baltimore, MD yesterday. My goal was to be evaluated by medical professionals who deal with this type of disease on a high volume basis. I learned how important experience was when I was dealing with my renal cell carcinoma diagnosis and decided the same type of experience was needed with my pancreatic tumor.

I brought my uncle with me to be my advocate and second set of ears. We arrived in Baltimore the evening before since it didn't make sense to travel the day of my appointment. Johns Hopkins provides a list of hotels that offer discounts to patients of the hospital. I was able to book a room at a hotel approximately 7 miles away from the campus. I was not able to get a room closer to campus and figured all the hotels were booked for a convention or another event. It turns out the Boston Red Sox were the reason.

We decided to make a run to the hospital that evening to make sure I knew where I was going and how long it would take.  I found the hospital with no problems and figured it would take about 20-25 minutes during rush hour.

Next on the agenda was finding a place to eat.  I figure if I'm going to blow a bunch of calories and carbs that I might as well enjoy it.  We ended up going to Philips Harborplace at the Inner Harbor for dinner.  We are both starting to get tired and decide to head back to the hotel to retire for the night.

My first appointment is a CT Scan at 8:15 am. I know I have to register first so I want to get there by 7:30 am. I ended up signing in at the registration desk at 7:10 am. Its a good thing since the office was short handed this particular morning as they only had one person instead of the usual staff of three. The room filled quickly with patients waiting to register but the man behind the desk was quite efficient and held his own until reinforcements arrived.  I managed to get out of there by 7:50 am.

My next stop was radiology to have a 3D CT Scan. I'm a tech freak and like the fact that they have a 64 slice CT Scanner to get the best image quality possible. I always request a copy of the study on CD and filled out the paperwork for it.  The entire radiology staff was courteous and pleasant to work with.  I got a kick out of how they had me drop my pants below my knees as I lay on the scanner bed underneath a blanket. The scan only took about 10 minutes. As the tech held the blanket, I told her it was easier if I stood up to put my pants back on and I commented to the tech that I'm not bashful and I'm sure that you have seen more interesting things than an old man in his undergarments. She got a kick out of that and immediately agreed with my statement.

The next stop was the "Meet and Greet" from all the departments that make up the clinic. The clinic handles six patients and is held every Tuesday. Information regarding nutrition, counseling, housing while undergoing treatment at Johns Hopkins, the National Familial Pancreas Tumor Registry (NFPTR), disease management, Internet resources, genetics, and research studies are discussed.

We are then brought to the clinic area and each patient gets placed in a private room. My vitals are then taken. I then have about 10 vials of blood drawn.  That seems like allot but 5 vials were voluntarily donated for research by the National Familial Pancreas Tumor Registry.

There was some waiting time involved and each patient had the option of registering for the NFPTR which meant filling out a lengthly questionnaire. I answered questions about my medical history as well as my immediate family and close relatives. I had to stop and think about my grandparents real names because all I ever knew them as or called them was grandpa and grandma.

I was then visited by a member of the Surgery department who recorded my medical history.  All the patients then break for lunch while the Multidisciplinary teams gather to review each of our cases and devise a plan of action. The panel review of my case was a major factor in my decision to attend the clinic. I figured why not have a group of  highly experienced and respected professionals review my case and render an opinion.

During the lunch break, I went down to the radiology customer service department and picked up the cd of my CT Scan.  We had a positive encounter with a employee of the hospital. While my uncle and I were looking at a map of the hospital on the wall, an employee stopped and asked us if we needed any help. He was quite pleasant and pointed me in the right direction to pick up my CT Scan. My uncle wanted to see the old part of the hospital. The gentleman gave a brief history of how the term "rounds" came into existence (the original patient rooms were built in a circular design and doctors would go around the floor visiting each room). He also provided other tidbits of information. I thanked him for his help and jokingly asked him if he was available for tours as to which he smiled and replied  yes.  Based on what I saw today,  I would say this type of dedication and service was the norm for Johns Hopkins.

Now comes the moment of truth. After the lunch break, we go back to the private room and wait for the results of the review of my case.  Nurse Coleman, the coordinator of the clinic, comes in the room and gives me a printout of the preliminary findings on my CT Scan, lab work and final pathology report.

My next visitor is a surgeon. I'm told that the panel has recommended surgery to resect the tumor. This surgeon was assigned to my case because I am a candidate for laparoscopic spleen saving distal pancreatomy and this surgeon was the "go to guy" for this type of surgery. Normally, when a distal pancreatomy is performed, a splenectomy is performed since it shares blood vessels with the tail of the pancreas. I was prepared for that opinion as I did plenty of research and only found one case on PubMed out of a few hundred that was "watched" instead of resection. I was still a little surprised by their decision as the member of the surgery team who took my medical history stated that she thought the panel would recommend a watch and wait approach since my tumor was small.  The surgeon explained that the mass was not localized on the CT Scan (did not show up because of its size). He stated the slow growing nature of this type of tumor and also stated that they could watch it for two years and still not have it localize on the CT Scan. I was told the proof was basically in the pathology of the biopsy I had done previously and that there was no benefit to waiting.

The surgeon then explained that the plan of action would first include another endoscopy procedure to localize the tumor.  The reason being is that he wants to make sure of the location before he resects the tail of my pancreas. He doesn't want to cut and not get the tumor and he doesn't want to cut out more than necessary. He presented some other scenarios should the endoscopy fail to localize the tumor but he was confident in his gastroenterologists.

The surgeon then asks if I had any questions and I started to ask about a couple of the terms on the pathology report but halfway through asking I said to myself it didn't matter as the report was conclusive for islet cell tumor so the question was not relevant to me anymore.

We then go over the basics, possible complications, what to expect, how long in the hospital, yada,  yada, yada. We are done.

This surgeon was one of two I would have requested as a referral from the coordinator if I had not gone through the clinic. He drew my attention since one of his specialties is minimally invasive surgery. I could tell he was a little drained since he did mention he was in surgery that morning but my first impression of him is that he was a no nonsense tell it like it is type person.

I'm am basically now waiting to get scheduled based on the availability of the gastroenterologist,  the surgeon himself and of course the operating room.

I'm then visited by the surgical care nurse who basically asks if I understand what was presented to me. I explain that I do and we go over a consent that will allow them to keep the resected part of my pancreas for further study.

Nurse Coleman then visits again and I thank her and her teams efforts. I'll say one thing about Nurse Coleman, she is always in an upbeat mood.

I must say that I am feeling a sense of relief over this issue. I've been a little on edge ever since the general surgeon I was seeing at Geisinger had scheduled me for a splenectomy before even giving me an opinion on my splenic mass. I thought I was "back to normal" after my FNA on the spleen supported a decision not to have a splenectomy. Little did I know that I was going to receive a letter regarding my pancreas lesion days later.  When I'm on edge I tend to eat more and I've put on about 10 pounds since the beginning of July. I'm feeling much better now and anticipate that my eating habits will go back to normal now.

I am fully aware of how fortunate I have been compared to others with the same conditions. My conditions have been caught early and I don't have to deal with advanced stages like others do. I still have the same attitude regarding all my conditions. Life goes on and I'm not going to sit at home and jerk myself off living in fear or waiting for something that might not happen.  One of my questions to the surgeon was how long would it be before I could play golf again.  Enough said.

I recently had a regularly scheduled visit with my cardiologist.   I received an explanation on how the body reacts  when stents are inserted into an artery as a result of me asking what his opinion was on Plavix since he recommended that I could stop taking Plavix this past January.

My heart checks out fine and I was very pleased with the visit and my cardiologist.  I really like his bedside manner as he has plenty of confidence without a trace of arrogance.

I received a call from the Medical Records department at Geisinger late Thursday afternoon that I could come and pick up my medical records on Friday.

It didn't take long for me to start getting the runaround. I had asked for all the reports (procedure and pathology) as well as the images from the ultrasound.  I was handed an envelope with my reports. I asked where were the images I asked for. The clerk told me they sent a request to the x-ray department to put the images on disk and sent me over there to pick them up. I was told in radiology that they don't handle ultrasound images and that I would have to go to the endoscopy department for the images. I wasn't going to do the legwork so I went back to Medical Records and told her what was happening. The clerk made a few phone calls and basically told me they can't get me the photos.   I also inquired about the slides created from the FNA and was told that Geisinger will send them to the pathology lab at Johns Hopkins themselves when they receive the request.

I like the coffee at Geisinger so off to the cafeteria I go. I sit down, open the envelope and start reading the reports. While I was told during the consult after the EUS that there was a mass on my pancreas (thought it was an hemangioma), the report states that the mass was suspicious for islet cell or neuroendocrine tumor. The report also stated the mass was 10 mm x 6 mm and in the pancreatic tail. I then read that they performed a fine needle aspiration on the mass in my pancreas.

I stopped reading for a minute as I was sort of surprised that the gastroenterologist never told me or my advocate that an FNA was performed on my pancreatic mass. It makes sense that they would perform the FNA since they were in the neighborhood already but I still can't imagine why he didn't mention it. 

I then thought how the general surgeon looked at the images and reports to form an opinion but did not include answers to the specific questions I asked about size and location. 

I then start reading the pathology report. It states that the samples taken from my spleen are negative for malignant cells and all they sampled were normal cells and blood elements.  The pancreas lesion FNA states the results are indeterminate and that I have a Pancreatic endocrine neoplasm. When I got home I researched all the genetic markers that were tested for with the pancreas samples. It basically said that it tested negative for renal cell carcinoma, negative for markers that are present when adenocarcinoma is suspected and also negative for a marker associated with pancreatic malignancies. I did test positive for some markers that makes the mass a probable neuroendocrine tumor and behave most likely as a benign or borderline tumor.

I then called the Johns Hopkins referral coordinator. I was told that I could either get a referral to make an appointment directly with a surgeon or I could participate in their multidisciplinary clinic.  I chose the multidisciplinary clinic since I could get all my tests done in a day (if warranted) and have an opinion and plan of action by the end of business that day. They take a panel approach in reviewing cases and why wouldn't I want a panel of professionals experienced with pancreatic disease evaluating my case.

I learned after my first CT Scan that it best to get the images and reports of any study you have done. The first urologist I saw never told me about the mass on my spleen when we reviewed my CT.  I found out when I requested the study and read the radiologists report after my appointment.  I would have requested the reports of my EUS eventually but the letter from the gastroenterologist prompted me to act sooner than I would have.

I thankful  that the general surgeon gave me the option of the UES in the first place and I'm happy that the FNA was performed on my incidental pancreatic mass. I just wish they would do a better job of disseminating the information to the patient. 

I believe that I am very fortunate to have had the pancreatic mass detected early. Time will tell how fortunate but one thing is for sure, I would have still sought a second opinion and treatment from an institution that deals with pancreatic tumors on a high volume basis.

While I'm disappointed in the lack of communication here, I've learned from past experiences not to dwell on the negative especially when it doesn't affect my "bottom line" and just put it behind me.

I've spent a ton of time online researching neuroendocrine tumors of the pancreas. My ultimate goal is to be educated enough to be able to make informed decisions that I can live with. I believed I've accomplished that goal.

I've browsed the websites of many of the leading hospitals who deal with pancreatic disease. Each has plenty of information about the different types of tumors. I have been diagnosed with a neuroendocrine tumor which is considered less aggressive and less common (approximately 15% of 28,000 cases of pancreatic cancer diagnosed annually) than adenocarcinoma which is considered an aggressive type of pancreatic cancer. I believe that I am again fortunate that this tumor was detected early. Most pancreatic cancer patients aren't as lucky as the cancer is usually detected when it has progressed to far to be treated in a curative manner. I'm very hopeful that mine can be treated in a curative manner.

As with kidney cancer, there are two mailing lists on ACOR that deal with tumors/cancer of the pancreas. I subscribed to those and searched the archives for information.

One of the biggest sources of information has been the patients and caregivers who frequent the pancreatic cancer discussion board hosted by Johns Hopkins. One thing I learned quickly when dealing with my kidney cancer is that cancer patients won't hesitate to help another cancer patient out and its no different with pancreatic cancer. I've only gone through the last 9 months worths of posts but in all honesty, it didn't take me long to figure out how devastating pancreatic cancer is. One fact stated time and time again was to get treatment from a surgeon/institution that has high volume experience in dealing with tumors of the pancreas.  

I've also watched videos from past conferences regarding carcinoids (which that is one type of pancreatic tumor) and have found them very helpful. I've also watched a whipple operation on or-live.com  and I must say that was interesting to say the least.

Pancreatic cancer is devastating. I'm not going to go into detailed statistics since I believe nobody should be considered a stat but the 5 year survival rate for tumors less than 4cm for renal cell carcinoma is 95%. Now, compare that to the 5 year survival rate for patients with pancreatic cancer, its 5%. You can't even compare these two forms of cancer, both are bad but you get the picture how devastating pancreatic cancer is just by that one statistic.  I got a pretty clear picture of the devastation and emotional toll that takes on a patient and their families when I read alot of the patient biographies on the Johns Hopkins discussion board. My story has yet to unfold but I feel like all I had was a "common cold" cancer compared to the people diagnosed with adenocarcinoma or advanced stage disease of the pancreas.

I believe this knowledge has helped me already. I made a decision to leave the care of the general surgeon I was seeing.  I liked him but there were red flags that were in my head that added up to not wanting to follow his plan of action.

I didn't like the way he flipped on his opinion of my spleen. I asked him point blank during my first appointment if it was a hemangioma and he was very convincing and sure of himself when he said he didn't think it was. I thought great, he's very confident and who wouldn't want a confident surgeon. Then at my second appointment, I didn't sense the same confidence and  he stated  the statistical probability that it was an hemangioma and gave me that opinion.  I also didn't like the fact that he was big on communication with his patients which was stated in his online profile but I didn't like the fact that I found out that he scheduled a splenectomy for me via a scheduler calling my house or by me looking at my future appointments in my online medical record,  I can't remember which one but I didn't like that at all.  He hadn't even given me an opinion yet when the operation was scheduled.  I also didn't like the fact that he took a pot shot at my urologist. Since I was diagnosed with kidney cancer,  everywhere I go within Geisinger, either the nurses or doctors ask who my urologist was and what procedure I had. The nurses all say that they hear he is tough to work for which is exactly what this general surgeons nurse told me. I told her I didn't care what he did and that I felt good whenever I went into the urology department and thats all that mattered to me. The surgeon then told me that all my urologist did was "stick needles in me".  I didn't say anything to him about his negativity, but his comment was in poor taste to say the least. I'm very satisfied with my bottom line with the urology department regarding my kidney cancer and I have all the faith in the world with my urologist  and his knowledge and ability in dealing with kidney cancer.

Getting my records.  I called the medical records department at Geisinger today to confirm their receipt of my request for my medical records regarding my UES. I was told yes and then asked when I could expect them. I was told 2 weeks with the amount of requests they handle. I explained my situation to the person I was dealing with who told me to let them  find out what they could do and they will call me back. I received a call back within 10 minutes and was told someone would be working on it today and that I could probably pick them up on Friday (which I offered to do, its a 90 minute drive each way).  I very much appreciated this persons assistance and thanked them for helping me out.

I don't even know how big my tumor is other than the description of "small" and then "extremely small" from the letter I received doctor who performed my UES. Another reason I left the general surgeon was that I asked him point blank size and location of the tumor and he didn't answer me. If he couldn't take the minute or two it would have taken to provide that information, I'm not going to let him cut into me. I know I could have called my PCP and asked him to look at my electronic medical record to find out but I figured I couldn't do anything until I had those records in hand and it didn't matter if I found out today or two days from now.

Incidental - (adjective) -  occurring merely by chance or without intention or calculation.

I believe I've been very fortunate since my diagnosis of renal cell carcinoma. You can say it was an incidental finding since I was experiencing gross hematuria that was probably caused by the kidney stones I had. When the CT Scan was done to help diagnose my gross hematuria, they discovered I had a tumor on my right kidney. I was very fortunate that it was detected early and I have such a good prognosis because of that early detection.

Another incidental finding from the original CT Scan was a mass on my spleen. I had an Endoscopy with Ultrasound and Fine Needle Aspiration biopsy done on July 10th. Initial cytology was negative for abnormalities. I was told the final pathology report would be available in approximately 4 days. I was told that I could call the doctors office and they would fax me the report. I didn't get around to it by the time I went camping the following week and figured I would take care of it the following Monday.

I came back from camping on Sunday evening and started going through my mail that had accumulated while I was gone. I saw a letter from Geisinger and thought it looked odd since it didn't look like an invoice or an explanation of benefits and it didn't have "appointments" stamped on it.

The letter was from the doctor who performed the EUS. The first sentence read "The spleen biopsy was negative." The second sentence read "There was a small neuroendocrine tumor in the pancreas, like we discussed." The doctor continued to tell me that it was extremely small and could probably be followed at present and he suggested I follow up with my surgical oncologist for an opinion.

I must say that I must be getting to be an old pro at this since I didn't bat an eyelash when I read tumor and pancreas although I knew that combination of words is not a good thing.

The first thing I did was ask Dr. Google what a neuroendocrine tumor of the pancreas was.  I found out it was a rare diagnosis with approximate 2500 cases a year or approximately a 1-4 occurrence per 1 million people. I also discovered that these tumors are slow growing, very hard to diagnose and that it could take up to 9  years to get a correct diagnosis because patients are typically asymptomatic until the tumors get bigger and by that time, treatment options are limited and usually not curative.  I also found out that when they are small, they are usually benign but when they grow they tend to become malignant. I also found out that surgical resection is the preferred method of dealing with these tumors. I also found out that maybe 1 in 5 people who present with pancreatic tumors are candidates for resection and the rest are deemed inoperable because the tumor has grown too large and wrapped around veins and arteries or has metastasized to other organs such as the liver.

I then spoke with my friend who acted as an advocate and  who brought me to the procedure on July 10th. I asked him if the doctor mentioned neuroendocrine tumor and he said the doctor pointed to a spot on my pancreas and said it looked like an hemangioma.  My advocate happens to have had a carcinoid type neuroendocrine tumor resected a few years ago so he would have known that buzz word if it was mentioned.  I thought it was odd that he mentioned "like we discussed" since I was so full of sedatives after the procedure about the only thing I remember is asking the same question over and over again and how gracefully the doctor managed to end the appointment.

I sent an electronic message to the surgical oncologist I was seeing for my spleen and asked him how big the tumor was and where (head, body, tail) it was located on my pancreas. I also asked what "plan of action" he recommended. 

I then did more research and found that its best to have a surgeon who specializes in tumors of the pancreas and specifically neuroendocrine tumors. I learned first hand what experience meant in dealing and treating my kidney cancer.  I concluded that I would do the same with this latest incidental finding. Johns Hopkins in Baltimore is in my HMO and handles tumors of the pancreas on a high volume basis and is well thought of by patients who have been treated there. 

I then received a response from the surgical oncologist. He stated that he thought it was a non-functioning neuroendocrine tumor. He stated that we should watch it closely, recommending a CT Scan in 3 months and that he would recommend resection if the tumor grew. He also stated that he also recommended resection if the tumor was 2cm or larger. I was also told that his surgery would be laproscopic and that it would include a splenectomy.  I was thankful that he responded but he didn't answer two specific questions I had posed and I'm not the type to ask twice. I need information to make informed decisions and he wasn't providing them. I am not emotional this time around like I was with my kidney cancer and his lack of response made my next decision easy.

I sent him a message back thanking him for responding to my inquiry. I also told him I would be following up outside of Geisinger and that he could cancel the CT Scan that he was in the process of scheduling. 

I also sent a message to my Primary Care Physician that I am in the process of requesting my medical records and that I would be requesting a referral to Johns Hopkins when I received all the materials I need to make an appointment (reports and ultrasound slides). He responded that they would assist me when I asked for the referral.

When I receive the materials I'll call Johns Hopkins for an appointment. Their website for pancreatic diseases if full of information and states that they can have a patient scheduled for an initial appointment within a week of contacting their referral coordinator.

So far, incidental findings have meant good things happen for me. I'm hoping for the same this time around.

About the only other thing that I could think of that would want happen to me and  fall into the incidental category would be the winning numbers for the $54 million Powerball drawing tonight.

I actually thought my next blog entry would be my last but I guess I was wrong.  All I can say is that life goes on and that I won't let this next journey stop me from living.

Click for larger image

Click for larger image

I just thought I would show the before and after MRI images of the tumor that was on my right kidney. These images were captured post contrast. As you can see, the image on the left is before my cryoablation surgery and the tumor enhances (is white). The image on the right is 3 months post cryoablation surgery and as you can see, the tumor does not enhance (is black) which means the tumor cells are dead.

I had a Endoscopic Ultra Sound Guided Fine Needle biopsy of my spleen today.

I had a good idea of who would be involved and how this procedure worked by viewing a similar procedure on www.or-live.com The procedure I watched was done on a pancreas instead of a spleen.

I chose this option because after I did my research, there was only about a 1% chance that complicatoins would result in me having an emergency splenectomy today. I also calculated a 90% chance of the surgeon being able to get a good batch of cells from the mass.

I also thought the risk was very minimal for complications. This procedure is preformed with much more frequency in Europe with minimal complications. If  there was an avenue that didn't include splenectomy that could give me some answers, I would take it.

The whole procedure probably took about 45 minutes. I was given sedatives around 9:30am and didn't wake up until around 11:15 am. The one good thing about this procedure is that preliminary findings could be given almost immediately. Once the surgeon gets the biopsy samples, they have a cytology tech on the team, apply the stains and create the slides. Someone from pathology then comes and reads them.

I was  given a preliminary report there were no abnormaties in the biopsy samples that were examined. I was told that a pathology report would be available in about three to four days.

I believe that even with a probable non-finding of cancer, the mass still has to be watched and if it grows, I would then probably decide to have a splenectomy.

The biggest reason for me to do this would attain a certain piece of mind that I did something and don't have to wonder if I'm walking around with a "probable benign mass" versus walking round with mass that I had biopsied and that no abnormal cells were found. 

Hopefully the pathology report will match the preliminary findings.

I just got out of the doctors office. 

He basically told me what I had already figured out from my research on the internet and from talking to members of my support group. Its very hard to diagnose masses of the spleen from MRI's and CT Scans. I was told that he thought it was benign but that he couldn't be sure. 

He basically gave me a few options (in no particular order). First was to just take it out. Second was to wait three months and get another CT Scan to see if the mass is growing. The third option was a fine needle biopsy because of my history with renal cell carcinoma.

The doctors staff is quick and I like his nurse but I told her she was a little fast during my first visit when she mentioned that they give patients who have spleenectomies vaccinations. I also told her I thought it was a little premature to have an pre-surgery education appointment (interviewed by the anesthesia department) show up on my appointment schedule when I didn't even get an opinion yet. 

When I checked out of the office, I told the receptionist to cancel my pre-surgery appointment. I found out that they had scheduled the splenectomy for July 17th if I decided to have it taken out.

The surgeon told me it wouldn't make a difference if I waited three months for another CT Scan to see if the mass has grown. It had grown a few millimeters from a CT in March to now. 

I now have some options to think about but I know I won't be having a splenectomy on July 17th. I'll do some more research and think about the biopsy which would be an out patient procedure.

So for now, its wait and see.  I was hoping for something definitive to make my decision easy but now I'll have weigh my options and make a decision.

The surgeons options made sense to me as well as his explanations. I brought a second set of ears with me this time and he came away with the same impressions I did.

  

I had a great time on vacation. One item on my "to do list" was to walk 18 holes of golf which is something I wasn't able to do since my cryoablation surgery. I was playing golf 3 weeks after my surgery but I always either rode 18 or walked 9 and then grabbed a cart. I was very satisfied that I was able to walk 18 holes twice in mid 90's heat with high humidity and still feel like I could go another 18 after the round.  I also had a great time with my friends as we managed to play a few different area golf courses.

I also went to the east coast for a weekend. I visited with a few friends and managed to go out to dinner in "Little Havana" in Miami. It was quite an experience. I also managed to visit Lincoln Drive in South Beach for an evening and enjoyed outside dining. Lincoln Drive sure has changed for the better since I last visited there about 12 years ago when South Beach started its rebuild. I highly recommend visiting Ghiardelli's for desert.

I had a CT Scan yesterday. I don't know, compared to an MRI the CT Scan is sort of disappointing. I guess its the time frame spent taking images as the CT scan made only six passes and I only had to hold my breath for maybe 10 seconds max at a time.  I'm just hoping that the pictures from this study are good enough to get an opinion from the general surgeon.

I don't know if I would call it a benefit but I do have access to plenty of medical professionals in my personal support network. I do my research on the internet like every other patient and ask questions if I don't understand something.  I had dinner with such a friend in South Beach. He is a radiologist and I asked him general questions about studies on the spleen. He basically confirmed everything I read on the internet and added a few interesting facts. 

I have my appointment today at 11:30 am with the general surgeon. I don't think anyone can shock me anymore with any type of medical opinion but like I said, I'm hoping to get an opinion and then make a decision based on that opinion.

I don't know if I will have internet access as I am headed for my camper straight from the doctors office. My friends and supporters might have to wait until Sunday night for an update.

I'm leaving in a few hours for a mini golf vacation in Florida. I've already received an invitation from a friend to play on Monday and gladly jumped at the chance.  I'm a little rusty but I'm all about getting out and playing now and not worried about how I play.  My best friend Bruce is also having his yearly scan at Moffitt Cancer Center in Tampa so I'll be there if he needs me for support.

I have my appointments set for lab work, CT Scan and doctors appointment. I get back July 1st and have the lab and CT Scan on July 2nd and see the surgeon on July 3rd. 

I had four scheduled appointments today. I had an MRI scheduled, an KUB x-ray, a urologist appointment and an appointment with the oncological surgeon.

First up is the MRI. I almost never made it past the MRI. The two technicians were top notch and knew how to get things done. I was impressed since they did their job and read my medical record before I showed up. I didn't even get a chance to fill out the questionnaire completely before they called me in from the waiting room. They didn't even look at my questionnaire before they asked me for my stent manufacturer cards that I carry in my wallet. I'm glad I was carrying them since they would not have done my MRI without me producing the cards. I also needed to get an x-ray of my eyes since I had an injury years ago in which I had metal in my right eye.

We ended up chatting for a while before my MRI and we shared our experiences with doctors we all used and gave me references on some other doctors. One thing they told me was that my urologist was good but that sometimes his patients wait 90 minutes for their appointments. I told them I have never waited and actually I was taken early once. I was also told that Geisinger is building a new radiology center close to Scenery Park which would be 10 minutes from my house as compared to 90 minutes away in Danville. One thing I like about Geisinger is that they like to have the latest and greatest tools like the da Vinci robot and the latest MRI machines.

I still don't get nervous regarding scans and what they might uncover. I don't concern myself with what MIGHT happen and with something I have no control over. The only item that concerned me about my MRI was the fact that they didn't put an IV in my vein before I went into the MRI. I was surprised that they actually inserted the IV for the contrast while I was still inside the MRI after the scans that were taken with no contrast. All I was hoping for was that they were good at it since if they missed my veins I would have been pissed and inside the MRI which could have led to some harsh words when I got out of the MRI. I'm just glad they didn't miss. My MRI only lasted about 40 minutes which was about 30 minutes less than my previous MRI. I think I may be a little crazy because all I could think about while I was in the MRI was the scene from Kill Bill Volume II where Uma Thurman was buried in a coffin, the thoughts didn't make me nervous, I actually had to stop myself from laughing a few times.

I had a good time with the technicians and they told me I could request them for my next MRI and all I had to do was tell the scheduler in urology to request them when the appointment was made.

Next up was the KUB (Kidney, Ureter, Bladder) X-ray. I was in and out of another radiology department in 5 minutes.

I had plenty of time before my 10:40am appointment with Dr. Rukstalis. I grabbed a cup of decaf from the cafeteria. I'm a coffee nut and like their coffee. This was the first time I had decaf and it tasted better than their regular coffee.

I got to urology in plenty of time for my appointment. He is running late today and I think I ended up waiting about 90 minutes before I got to see Dr. Rukstalis. I guess the MRI technicians were right about having to wait sometimes. I usually get high blood pressure when I wait for a doctors appointment but that was not the case today. I usually feel great when I'm in the urology department and today I was feeling the best I've felt physically and mentally. I could have waited 3 hours and it wouldn't have made a difference. Dr. Rukstalis gave me the time when I needed it and I have no problem waiting if he is busy with something or another patient who might need the time with him.  There were plenty of patients waiting for appointments with him and I got the impression that everyone felt the same way. I don't know what it is about Dr. Rukstalis but he has a way about him that makes everything feel right.  One thing is for sure, I'm happy that he treats me like a partner instead of a patient, it makes a world of difference to me. I had no fear of what he might tell me about my MRI results.  We chat for a minute or two and then he pulls my MRI up on the computer screen. He's explaining how both my kidneys look good and how much my left kidney has improved since I had the stones removed a few weeks before. He then clicks a button and the MRI runs thought a series of pictures. I knew it was good before he opened his mouth since I didn't see any white in the area on my right kidney were the tumor was.  I know that white means enhancement and that means a live tumor. It was all black. He explained to me why the ablation zone was larger than the tumor and I understood about margins. Needless to say, I was very happy with the result.

Dr. Rukstalis was very happy with my progress and he made a decision that my next scan should be in 6 months. We chatted a minute about follow up strategies but I didn't want to push it since it was an issue that we can discuss in six months. I knew he had other patients and I like short appointments with him since that usually means I'm in great shape. He got off easy since I wanted to give him a big hug but I was afraid that I might hurt him.

I was supposed to see the oncological surgeon next regarding a 4cm mass on my spleen but I received a message while I was waiting for Dr. Rukstalis that the doctor had reviewed my MRI and that it didn't show him anything new. I was told that my appointment was cancelled and that the doctor would be ordering another study and that I would get another appointment the same day of the study. True to form I received a call today (Monday) from the outfit that approves CT Scans for my HMO and that my doctors request for a CT Scan was approved. I wasn't disappointed that I have to wait a little while longer to get an opinion on what the mass is.

I'd say Friday the 13th was a lucky day for me.

This was probably the scariest doctor you ever want to visit. Its the CANCER doctor.

I'm here to get an opinion on my spleen which is enlarged and has a mass on it. I have a CT Scan that says the mass is 3.9cm x 3.5cm that was done in December of 2007 and an MRI from the end of February 2008 that says the mass is 4.0cm.

I get to chat with the doctors nurse, very pleasant but got a little ahead of herself when she told me they give patients who have a spleenectomy multiple vaccination shots. I was saying to myself, Hey honey, slow down,  I'm not there yet!!!!!!!!!!! 

The first person I meet is the resident who conducts an interview.  I think that is a nice touch as it gives me a chance to get comfortable with him. I broke the ice with a comment that I'm glad that I didn't have to provide a sample like I do when I visit the urologist. I've had excellent experiences with two residents so far and like working with them.

Next up is the big cheese himself. I'm told he gives out his cell phone number to his patients. He is one of the few doctors who actually fills out the philosophy section on his Geisinger web profile. True to form, he gave me his card and said his cell phone number is on there and that I should be feel free to use it 24 hours a day if I need to.

We chat a little on why I'm there and I find out I'm in the right place with the right type of doctor.

I'm told that he doesn't think it would be metastatic kidney cancer since that is rare.  I'm also told that the pictures from the MRI and CT scan are not of the best quality which means he really can't give me an opinion on what the mass could be. He tells me there are too ways to find out what the mass is. One option would be a biopsy which he really doesn't like since he says thats too bloody. The next option is an other CT Scan. I tell him that I have an MRI of the abdomen scheduled for 6/13. He pulls the order up on the screen and tells me to get an appointment with him that afternoon.

The plan is to watch to see if the mass in growing. He states that if the mass is growing, my spleen would probably need to come out. I'm also asymptomatic so that is also a plus.

They keep my CT Scan and MRI that I brought with me and are sending them down to the radiology department for them to read.

I only asked a few questions. I asked him is he thinks its an hemangioma. He states that he didn't think so. Of course I now have a conflict since a previous opinion given to me was that the mass was an hemangioma. 

I was going to have lunch with a friend that I met in the hospital but my appointment was delayed about 1/2 hour so we had to scrap the lunch plans for another day.

I had to be at Geisinger Scenery Park at 3:20pm for an appointment and I got there at 3:25pm but that was not a big deal. I got into a heated little discussion with the nurse about yesterdays message. She thought I was in distress even though I clearly stated that I was fine at the end of the message.  I  understood her concern about the possibility of  miscommunication as I was told that some patients use the email when they should be going for urgent care.

I ended up having a good blood pressure and my heart rate was in normal range so that is a good thing. I had an echo cardiogram and that showed better results than my last test. My labs previously done in the afternoon in Danville  looked fine. It was concluded that I could just have been dehydrated when I was exercising. I had experienced the same fast heart beat and dehydration when I was in the hospital after my cyroablation surgery. They want to put me back on a medication for blood pressure that one of the doctors in Danville took me off since he stated that drug damages the kidneys even though its supposed to help protect the kidneys. Its confusing since I don't know who to believe.  We took a wait and see since my blood pressure and heart rate were acceptable when I was in the office. We also discuss some of my diet and I'm going to drink more water and switch to decaf since caffeine can cause increased blood pressure.

I'm basically down to 4 appointments all on 6/13 (an MRI, an x-ray of the abdomen, my urologist and general surgeon). I also have two regularly scheduled visits to my cardiologist and primary care physician.

I'm starting to see the light at the end of the tunnel so to say and I'll be glad when I'm back to just regularly scheduled visits.

It wasn't 10 minutes before I received a response from my PCP's office. They tried to reach me by phone but I was walking my dog. Add another appointment to my list tomorrow as I have an appointment with a nurse practioner tomorrow at 3:20pm in my local doctors office.  Its going to be a busy day since I have to be at Geisinger in Danville at 11:30am for an appointment with the general surgeon.

I now am now without a stent for the first time since the beginning of March. I don't know if I'm just a freak but I never had any pain with it, just minor discomfort when I exercised or played golf. When I did my research on stents, I read many a story of patients in constant pain after having a stent inserted. I took out my temporary stent (pictured right) two days after the procedure. I went back to my regular workout yesterday. It was oh so sweet not to feel discomfort 10 minutes into my workout and then have gross hematuria afterwords and basically be tired for the rest of the day. My only problem during my workout was I started to get short of breath after 25 minutes and I figured it was because it was almost 6 days since my last workout and I do tend to go at a fast pace. I don't take much credence in the pulse rate monitors on the exercise equipment but I was shocked when it went to 179 since the highest reading I've ever seen for myself on those was in the 140's. I then started feeling a little discomfort in my jaw which is the same symptom I experienced when I had my heart attack. I wanted to see if my pulse rate was high so I switched to a treadmill and my pulse rate read 152. Normally, after switching from the elliptical trainer to the treadmill, my pulse rate is 112 max. I was considering a trip to the emergency room but when I didn't turn white, I figured I wasn't having a heart attack. I was concerned for the rest of the day as I did feel "funny" in the chest a few times but I never had any chest pain. Its now the next day and my blood pressure has been acceptable but my pulse rate has been over 100 so I just sent a message to my PCP that includes readings for the last week.

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I got home around 9:00pm and am happy that I will be sleeping in my own bed. I don't feel any pain and about the only discomfort is comporable to the discomfort I had after a cystoscopy. All in all, not to bad. 

I ended up with a temporary stent with a nice string attached that I get to pull in a few days to remove it. I'm more than happy to be getting rid of my stents. I had one since my kidney cryoablation surgey which really only bothered me while I was playing golf (felt like I was getting stabbed in the left kidney) and after exercising. I just hope I finally get back to having no hematuria as it would be nice to look down and see somehting normal for a change.   

Next up is a visit to a general surgeon for an evaluation of my spleen and then I have to followup with my other urologist in about 3 weeks which includes my first MRI post cryoablation. I'm hoping my roll of good fortune continues and that my post op MRI will show no enhancement (meaning that its dead) of the tumor in my right kidney.

A big THANK YOU goes out to all my friends who sent their prayers and well wishes my way.

I just received a call from In/Out Surgery at Geisinger Medical Center.  I was told to report at 12:45 pm. I'm happy that I get to sleep in my own bed.

Google sucks (not really) but having patience and a good team of doctors is great.

I had an appointment with a dietitian this past Monday. We basically went over some of my numbers (Cholesterol - 110, HDL - 43, LDL -52 and Hemoglobin A1C - 5.3) and my current eating habits. While my numbers were good, we talked about carbs and how I should increase my intake of carbs since I try not to take in high amounts of carbs. 

I've never really gone on a diet to lose weight since I was diagnosed with type II diabetes as I've always been able to make lifestyle changes to help me control my diabetes. I only seemed to stumble when I had another health problem that prevented me from keeping up those lifestyle changes. 

We basically went over my diet and I was given a breakdown of where I should get my calories from. I never liked diabetic exchange diets and from what I learned from this visit is that I should increase my calorie intake from carbs and decrease my intake of proteins. I currently weight in the 192-195 range but I have a personal target of 180-185.  It was recommended that I limit my calorie intake to 1800.

I also have a goal to get off all my diabetic medication and so far I've reduced my dosage from 2000mg a day to 500mg a day. So far, so good as my blood testing is still showing favorable results.

We discussed my protein intake and I basically told the dietitian that it was unrealistic for me to lower my portions of meat to 3 oz as that is what was recommended to me. I thought I was doing well when I went from eating 16 oz portions to 8 oz portions.  I told the dietitian that I would probably need to be fed intravenously to be within range of my new suggested targets.  The dietitian knew I was kidding with her.

I had one test result that the dietitian was concerned about and that was too much protein in my urine.  I usually don't miss a trick and quickly noticed that the test result was removed from my list of completed lab results in my online medical record. It also didn't get past me that my PCP is concerned with my blood pressure as I was asked to check it regularly and its been within the suggested range each time I record it.

I quickly googled "too much protein in the urine" and got a slew of possibilities. There are so many possibilities and I already know that I will be referred to a nephrologist so I'll let my medical team take care of it.  I already know I probably have a urinary tract infection (which can cause too much protein in the urine) from the way I feel and from the results of a urine culture taken last Monday (Yeah, I googled the name of the strep bacteria that was found in my urine). My research told me I was probably going to get antibiotics before/during  my upcoming surgery this coming Thursday. I've received excellent care so far from the doctors at Geisinger and I don't see any letdown now with the urologist working my case.  

Overall I found my appointment very informational. I know I won't change my diet until after getting evaluated by a nephrologist since I still have to find out the source of and types of stones I'm producing and adjust my diet accordingly to maybe help prevent future kidney stones.

One thing is for sure, I'll probably never eat another Big Mac or Whopper. The dietitian gave me some literature and included was the breakdown of calories, fat and sodium in fast foods. I usually only eat fast food when I'm driving on a long trip with my dog but I'll definitely think twice the next time.

Another appointment. I had another appointment today with my dental hygienist and dentist. Another plus as I got my teeth cleaned and my checkup did not reveal any problems. Another nice appointment since nothing bad was found. I guess I'm on a roll.

Expensive weekend.  It turned out to be an expensive weekend for me. I had purchased a travel trailer (a 33 foot camper) last September and am giving camping a try this coming year. The $350 cover used while storing the trailer was ripped to shreds by the wind as it developed a tear and went to pieces from there. I'll have to replace it at the end of the season. I also had a 30 lb lp gas tank stolen from the camper. At least the thieves were smart and took the full one and left me the empty one which I had refilled since I needed the gas if I wanted to run the stove and heater (yeah, it went to the 40's). I also suffered another minor inconvenience as the license plate was also stolen.

The Call.  I will receive a call sometime tomorrow afternoon telling me what time to report to the hospital on Thursday for my surgery. I'm have confidence in my medical team and  I'm not feeling any anxiety about the procedure and I'm confident that everything will go as planned and that I'll be home in my own bed Thursday night.  If I draw an early time, I'll drive to Danville Wednesday night which is a little over 90 minutes away and stay in the Pine Barn Inn.

I don't think I would have ever considered having kidney stones a good thing.....until now. While I can't be sure that my kidney stones caused my hematuria, its a good bet that they did which sent me to the emergency room where a CT Scan revealed the tumor on my right kidney. Its time to say good bye to my little friends. One of my stones is pictured to the right (top photo). Until my visit, I only thought I had one stone but I also was told that besides the stone thats in my left ureter, there is one in my left kidney as well.   I met today with the urologist who will be performing the ureteroscopy with lithotripsy. I do my research on any professional I'm going to see and I was very comfortable (OK - I admit I was impressed) with this urologists career accomplishments to date which includes giving continuing medical education courses for the American Urological Association.    I do try to talk to other patients first but the only reference I was able find was on a another patients blog with a comment that stated this doctor "scared" the spouse of that patient. I was very satisfied with how our appointment unfolded. The procedure was explained to me as well as my short term and long term care regarding kidney stone management and kidney function. I was definitely hearing confidence in the doctors voice as my plan of action was explained and any questions and concerns I had were addressed to my satisfaction. I come prepared with a list of questions but didn't have to ask any at the end of the appointment since the doctor was very thorough. It didn't take long for me to trust the doctor. I appreciated the doctors straight forward communication with me. I really couldn't see how this doctor could scare anybody.  My procedure is scheduled for May 22nd and I should be home that day. Hopefully there will be no complications. I'm really beginning to see a light at the end of the tunnel. The only issue slowing me down now is the stent that I have. I had an abdominal x-ray and you can pretty much see what a stent looks like from the two x-rays seen at the right. After the procedure is done, I'll have another temporary stent which should only be left in for a week at the most. I'll then get the chance to heal and hopefully the discomfort I feel after doing my aerobic exercises will be gone as well.  Bye Bye my little friends!!!!!!!!!!!!

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I'm in the middle of a mini vacation. I've decided to take a few days off from working out.

I believe its time I started to listen to my body. I've basically been pushing myself and its been a cycle of workout,  get symptoms that indicate I'm aggravating the stent, do some more activity and then rest up for the night and do it all over again. 

I'm not in pain, just minor discomfort that I can feel is intensifying with each passing cycle. I don't want to push my luck when I'm less than a week away from getting an evaluation including x-rays etc. I actually feel a little recharged and am not experiencing any symptoms at the moment.

I received an email from my surgeons office asking how I was doing and that I should respond electronically via mygeisinger.com or call in.  It made me fell like I was making First Contact with them since its been almost two months since my last contact with them. I've been feeling fine and recovering nicely so I had no need to contact them. The nurse reminded me that I had an appointment on 6/13 and that the doctor wanted to do an x-ray and ultrasound. I thought it was strange because I had an MRI scheduled before my doctors appointment on 6/13 and what would be the purpose of an additional x-ray and ultrasound.

I couldn't respond via mygeisinger.com since they have a 750 character limit in the response. I responded to the nurse that I would call her back.  I then thought better of that and wrote a memo describing how I was doing and faxed it in. My reasoning behind that is my response will be in black and white with no room for interpretation. I then called the office and left a message for the nurse that I faxed the response in.

I wasn't expecting a call back but the nurse called me back on my cell phone. It became obvious real fast that we were not talking about the same issue. I was talking about the renal cell carcinoma found on my right kidney and she was talking about the stent that was inserted because of the stone in my left ureter.

I was originally told that the the stent could stay in for upto 6 months as long as I tolerate it. I was told that my surgeon consulted with and referred me to another urologist at geisinger (has an interest in stone disease management) whose opinion was that the stent and stone needed to come out within four weeks. 

When I got home, there was another electronic message from the nurse. She had spoken with urologist who will be handling my stones and was told that I would need surgery to remove the stent and also the stone. It wasn't the type of message I was expecting to read when I got home from playing golf. I was asked to make an appointment for an history and evaluation and also asked if May 22 was ok to schedule the surgery. 

The timing to remove the stent and stone is a little sooner than I was told or expected but it has to come out sometime and whether its now or later doesn't really matter to me. 

I did my research months ago about the procedures used to treat stones.  Its amazing what you can find on the internet as I found video of the procedure they will be performing on me.  My research also included reading about the experiences of other patients who have had this procedure. I have a pretty good idea what to expect and also have the information I need to help me evaluate the specialist and ask any questions should I have any after the procedure is explained to me.

Random Thoughts

I was pretty amazed when I looked at my future appointments. I have 14 future appointments in the next few months with medical professionals.

I'm appreciating my primary care doctor even more as times goes by. I've only seen him twice but he made enough of an impression on me that I didn't hesitate to recommend him to a friend of a friend.  The doctor that they wanted to switch care from....... you guessed it, my old primary care doctor.

I have to make sure my car insurance premiums are up to date. My niece might be coming to visit and she has her drivers license permit and wants/likes to drive. My uncle taught me to drive when I was 16, he took me to a large cemetery to teach me.

More Random Thoughts

• The nurse mentioned "surgery". I like the term "procedure" better as it sounds less ominous especially when done on an outpatient basis.
• I get to save a ton of money on hotel bills for this procedure since I won't have an entourage.
• I'll get to try something else on the menu at the Pine Barn Inn.
• I'm a coffee freak and I love the coffee at the hospital.
• Booked a cruise in November on the Crown Princess, wasn't that the Love Boat?
• I now own three sets of golf clubs, can you tell I'm a golf club ho
• I have to get to New York/New Jersey soon to swirl my friend Joanne, its been too too long!!!!!  Yes Joanne, I know, as you would say, "That's too funny!"

I played in a golf event today whose purpose was to celebrate the life of a friend. This friend is terminally ill and doctors have given him less than a year to live. This friend hasn't been playing much golf lately but I have managed to play some holes with him a few times in the past month or so. The last time we only played 4 holes as we were both running out of gas that day. He knows my diagnosis and we talked about his.  He told me he came to accept his diagnosis and that he was happy to have had such a good and  long life. The only issue he spoke with me about was that he did not want to be in pain when his time was finally up.

Today was a celebration of his life. We had over 150 of his friends turn out for golf and a luncheon.  A few of his closest friends got up and spoke (like a Dean Martin Roast) recalling the good times of yesteryear.  I would say the event was a success as the man knows for sure he has a ton of friends. The event also raised some money for an endowment fund who will use the funds in accordance with my friends wishes.

Another friend of mine was playing in this tournament. He also is terminally ill with cancer. He was kind enough to update me on his status as he recently had some appointments to see if he was a candidate for some trials. It turns out he was not eligible for one trial and he turned down the other trial as the risk/reward was not to his liking.  I admire this man even more than I did before since he is exploring all available options and making the tough decisions with a clear head even though he has been given months to live.
 
I thank both men for sharing with me and for providing me with examples of how I would want to act if my prognosis ever changes.   

Note to Me.

Keep posting on the forums for Kidney Cancer. Kidney cancer sucks for each person diagnosed. Some are more fortunate than others in terms of staging and grade. 

In general, people fighting for their life in advanced stages of RCC are more likely to  post on internet forums. Their stories are inspirational. The newly diagnosed need to see that they can achieve a good prognosis after initial surgery like I did. There is no reason to feel guilty about your own condition as you know how fortunes can change quickly with RCC. SO KEEP POSTING. You've helped a few people already and its worth the effort. 

Stay positive. Have Hope.

I had a regularly scheduled appointment with my primary care physician today. I can say now that I really like his bedside manner. I know I'm going to get along just fine with him. It also doesn't hurt that I believe in his skills and that he gives me some input/listens to my concerns regarding my own care.  I also think his nurse is top notch.

I managed to get my diabetic medication cut in half again. My hemoglobin A1C went from 6.7 to 5.3 in 3 months time. I've also dropped 24 pounds (according to the defective scale) in the doctors office in the same time frame. I also requested a referral to a dietitian just so I can compare notes and see if there is any tip or trick I'm missing. I also got a referral for an eye exam. I was unaware before this whole mess started that diabetics were prone to eye problems, now I'm getting checked. 

I also received a referral to a general surgeon regarding my spleen.

Next stop is an MRI with my surgeon in about a month.

I continue to do research on the internet regarding renal cell carcinoma. I'm particularly interested in how other people are dealing with rcc. There are many blogs out there regarding kidney cancer with plenty of different styles and approaches to the disease.

I came across a blog called Cheeseburgers to Go. The blog chronicles the journey of a 40 year old male from Cleveland dealing with kidney cancer.  I had a lot of the same feelings he had/has. One thing I particularly like is his tell it like it is "no holds barred" style of writing, complete with everyday language.

I particularly liked his open letter to the doctor who gave him his diagnosis which included a life expectancy of 2-6 months.  He created an open letter on his blog to the doctor dated one day after his six month anniversary. He elegantly stated "f**k you" to the doctor. While I can't imagine how he felt when he was told that he probably had 6 months to live, I can understand his defiance/anger towards the original doctor when he survived more than 6 months. I guess you have to have been diagnosed to completely understand as alot of doctors can have inflated egos and never think they are wrong. I glad that the author has been clear for a few years now. I found myself laughing with him for a few minutes when I first read it.

I think I'm going to change my writing style. I've been so "politically correct" in how I've written all of my entires. I'm contemplating creating another blog with a Dave Chappelle "keep it real" style. 

One lesson that I was reminded of is that its not your prognosis that matters, its your outcome.

Studies. Believe the Hype? There are so many studies on probabilities/life expectancy. Those studies are based on only a fraction of the cases of people who have RCC. It might be a study on 250 patients in a 10 year span and thats only a fraction of the estimated 25,000+ yearly new cases of RCC during that time span. I don't care what mathematical formula you apply to those 250 patients, you can't be positive of the results and why would anyone want to apply those results to their own case. So many people have had a bad prognosis and have fought to beat kidney cancer to have that "one more day". I can't repeat it enough times how lucky I feel that my kidney cancer was caught early. I have a positive demeanor and won't stop living my life because of the fear of recurrence or what possibly may be in my future. I'll always stay positive and fight.

Oh yeah, one more thing. After reading his blog yesterday, I said "F**K IT" and had what has been my bi-weekly junk meal.  You guessed it, it was a cheeseburger to go.

I'm not the most patient person when it comes to taking it easy. Its only three weeks since my surgery and I'm back to my regular routine. I go to the YMCA early in the morning and then go play golf. The only restriction I still have is not to lift anything over 40 lbs. When that restriction gets lifted, I'll probably hire a trainer and start getting serious with weight training.

Time seems to have passed by quickly since my diagnosis to recovery. I really don't think about my cancer that much anymore, probably because I was very, very fortunate to have it caught early and also to have a good prognosis. I don't see myself sitting home and worrying my ass off when the only item that I can control is how I live my life. I know what the scanning protocols (CT Scans, MRI, etc) are of a kidney cancer patient with my prognosis and I'll follow them so any problems can be detected early and dealt with accordingly. I wasn't anxious when I had my bone scan or chest CT Scan and I don't see me changing my attitude in the future.

I don't feel the need to travel to exotic places or anything of that sort. I'm very happy with my quality of life before my diagnosis and I'll continue down the same path. I only have a few insignificant goals and that is to get my golf game back to a single digit index, play TPC Sawgrass and Pebble Beach. I turned down the job that I was offered but the door was left open should I decide I need to upgrade my insurance which is the only reason I was considering the position.

All my family, friends and supporters have been great. I'm still amazed at how many people came forward to offer their support. THANK YOU and I will be there for my friends should they need my support.

My time as a blog author is coming to an end. I'll continue to keep the blog online. I actually quite surprised that I've received over 5,000 hits in the two months the blog has been active.  I'll probably post one more entry in the near future then only update every once in a while (probably after my followup scans).  I'm still hoping to get the video of my surgery at my next appointment and post some stills or actual video.

I received multiple opinions on the lesion that was found incidentally when I had my CT scan on December 14th and was then visualized on an MRI on February 27th. All opinions were that the lesion on my spleen is a hemangioma. An hemangioma is basically an abnormal buildup of blood vessels.

I now know to ask my PCP for a referral to a general surgeon when I see him next month. I'm asymptomatic regarding the spleen. This is basically get an opinion from a general surgeon and then probably a wait and see situation that needs monitoring with the MRI of February 27th as a baseline for future monitoring.

I've communicated with many people (friends, family, fellow kidney cancer patients and their caregivers) as a result of my blog. I recently had the opportunity and pleasure to meet a friend that was made as a result of two diagnoses of kidney cancer. My friends name is Don and his wife's name is Jenny. I must say they are two of the nicest people I have ever met. Don was diagnosed with kidney cancer and like most patients, started searching the internet for information. Don found my blog via the google search engine. Don found my positive approach in dealing with kidney cancer inspirational. I told Don I was just like everyone else (a wreck) when they hear the diagnosis "kidney cancer". I was very fortunate to have many friends who provided much needed support and positive attitudes. I was given a diagnosis of kidney cancer on December 7, 2007. I was already 6 weeks in dealing with it when Don found my blog and realized he wasn't alone in how he felt in dealing with kidney cancer. By the time he read my blog, I had already accepted my diagnosis and had a positive attitude. Don chose a well respected surgeon from Johns Hopkins and was fortunate to be on the fast track when it came from diagnosis to surgery. His surgeon had an unexpected opening in his schedule and offered it to Don. I believe it was less than 10 days from diagnosis to surgery. Since Don had his surgery first, he made sure to share his experiences of his recovery with me to give me an idea of what to expect. We exchanged emails and chatted on the phone a few times but the biggest surprise was a "care package" that Don sent me that was waiting for me when I was released from the hospital. There was a huge box sitting in my family room when I got home from the hospital. There were about 12 individually wrapped packages with instructions to open one per day. All were thoughtful and witty. One package included three pairs of pajamas. How ironic since many a night I had to change my clothes 2-3 times because of night sweats. Other packages included music CD's, movie DVD's, books  to pass the time as I recovered from surgery. There were also gifts that were subtle hints (like a package of prunes) of what some "goals" were. Don and Jenny usually travel to Florida once a winter. Their trip was originally canceled by Don's surgery and recovery but decided to make the trip when Don felt up to it. I happened to get the OK from my surgeon to travel and made it to Florida last Monday. We decided to meet for dinner. My best friend Bruce joined us and we all had a great time.  Don wanted to hug me and he got his wish although I was afraid to hug to hard since I was afraid I would hurt him. Jenny had liked my goatee (that I shaved off) and Don was amazed at how young I was and how much weight I had lost from a picture I had sent him previously. We met in a crowded restaurant but it didn't take 5 minutes before we both lifted up our shirts to show our battle scars. His were about 3-4 weeks older than mine and I was happy that his were hardly noticeable. I knew from previous surgeries that incisions are usually hard to notice after time. I enjoyed the company and don't mind saying that it was a nice treat to have a splurge meal since I stick to my heart healthy/diabetic friendly diet. We all chatted like we knew each other for years.  I know I will keep in touch as I am interested in Don's progress and friendship and Jenny is such a supportive person. (Sorry Don, but don't get jealous when I email your wife) When we exchanged photos initially I could tell there was something special between them and I was right, they were definitely made for each other. We've already discussed about meeting next year and I hope to have them at my house for a couple of days or at least dinner and maybe a boat ride. One item that I am grateful for is that we both have a great prognosis for living with kidney cancer.  Even though kidney cancer sucks, its great to know you have a friend and that you don't have to be alone.

Click for larger image Click for larger image

I want to see where I stand physically two weeks after surgery. I was pretty pleased that I had no pain or discomfort after hitting some golf balls at the range on Tuesday.

It's Wednesday morning and I go to the YMCA to do my aerobic workout. I usually do 30 minutes on the elliptical trainer and then 30 minutes on the treadmill. One item that I love is the use of an IPOD during my workouts. It really makes them go quickly as I'm not always looking at the clock on the wall or the timer on the machine. Before I know it, my workout is finished. I see no need to push myself hard since its only two weeks after surgery. I do 20 minutes on the elliptical and 20 minutes on the treadmill. I'm not tired afterwards but can tell that I'm still not fully over the post op atelectasis. I don't have any chest congestion but I still have a little trouble taking a deep breath.

In the afternoon, I decide to play 9 holes of golf. I'm happy just to be out there but know I can't walk the course like I normally do so I take a cart. I feel the same as I did after my workout at the YMCA, I'm not tired but do find myself having a little trouble taking a deep breath.

I feel pretty good about my progress as I did not anticipate I could play golf two weeks after surgery. I managed to play 18 holes on Thursday with no problem other than my game is a little rusty. I was going to take Friday off from golf and go to the YMCA to workout but put my name on the alternate list since Fridays game was a two man event and people sometimes cancel out at the last minute.  I didn't even get to tee off and I already drew a partner for Friday so I'm playing on Friday also.

I also signed up for the club championship next month. My goal last year was to play in the championship flight but I'm putting that off till next year until I get my game back to where it was. I don't really care how I do as I am just satisfied being out there and playing.

About the only things I won't try now is to walk the course until I have a little more time to recover. I also won't double up working out at the YMCA and then play golf. I usually go to the YMCA at 6:00 a.m. to workout and then play golf. I see myself doing that in the future again but I don't see a need to push myself yet.

I finally made it back to Florida. It will be a short vacation as I have a regularly scheduled doctors appointment  with my PCP next month.

My flight actually arrived 30 minutes early. I had Gracie bring Sydney over to the house before she came to pick Bruce and I up. It was great receiving a very warm and wet welcome from her when I opened the door and said "Where's my baby girl". She came running and the kisses were nonstop for the next 15 minutes and of course I had to lay on the bed and rub her belly for a little while after that.

I feel pretty strong and actually quite normal. Its been two weeks since my surgery and I have no discomfort on my right flank. All the extra fluid that I was given when I was in the hospital is now gone. I weighed myself yesterday morning and I came in at 189. The swelling is almost completely gone in the areas of my incisions. Its almost been anti-climatic since I expected the healing process to be more painful and last longer.

The only gift that keeps on giving is the stent that was inserted on my left side. Its like having a mini kidney stone attack almost every time I go to urinate. I've experienced one kidney stone attack prior to its insertion and it wasn't as painful as others have made it out to be. To me, it just feels like a minor inconvenience when I feel I have to relieve myself. I know its only going to be inside me for 6 months before its taken out.  I know I have a high threshold for pain but as of right now, its no problem. 

I slept pretty well and it felt great to walk Sydney in the morning. I had my usual breakfast which she knows she is going to get some of my breakfast. It was great having those eyes look up at me again.

I then went to the golf club and chatted with some of my friends in the office.  I then went to the grill room where the group of friends I usually play golf with were just coming in from playing 18. It was great seeing them again and just sitting there shooting the breeze.

Dr. Rukstalis told me that I could play golf 3 days after surgery. The way I felt after 3 days I thought he was crazy. I figured I would play it cautious and only put two of my golf clubs in the trunk of the car when I left the house this morning. I went to the driving range after chatting with my friends in the clubhouse. I started off on the chipping green to make it easy on myself. I then went to one of the driving range stalls and knocked about 50 balls out of the bucket. I did my normal stretching routine and took my wedge out. I told myself to take it easy and I did on my first couple of swings. I felt no discomfort so I said what the heck and went full speed.  I spent the next 15 minutes hitting balls at full speed with no pain or discomfort. Its now 5 hours later and I still have no pain or discomfort so I'd say it was a success. 

I've already signed up to play with my friends on Thursday morning. I plan on going to the YMCA tomorrow morning and attempting my regular aerobic working. Then after lunch, I plan on playing 9 holes to see how I hold up. I also plan on signing up for Mens Day on Friday but that depends how I feel tomorrow afternoon.

Right now, I couldn't be any more satisfied with my progress after having surgery.

 

 

 

My mother has been with me since March 2nd and it was finally time for her to leave. While I felt good enough for her to leave a little earlier in the week, I must say it was nice having mom around. Besides, Bruce was sick so she got to take care of two patients.

I enjoyed Mom's home cooking (yes, heart/diabetic healthy) and learned a few more tips in the kitchen to liven up my menu a bit as well as to make some of my current specialties taste better.

She was a tremendous help around the house as she did what a Mom does. I never really had to use any of the words that Moms are famous for saying like "We'll See" (always means no), You'll abide by the rules as long as you live under my roof etc.... 

The last few days were sort of a mini vacation for her anyway as I took her shopping both days and we ate lunch out one of those days.

Thanks for everything MOM - I LOVE YOU!!!!!!

I feel that I'm getting stronger everyday. I've been diligent in using my spirometer and flutter but I still can't get to the top, probably because my sinuses are clogged and I can't inhale through my nose. I still manage to get it upto 2750 and I don't feel any congestion in my chest. The soreness on my right flank after using the spirometer all day also seems to be subsiding.

The weather has been cold so I haven't been walking as much outside. Lets face it, walking in the house sucks. I took my mother shopping at the Nitanny Mall yesterday and while she found bargains for 90 minutes, I walked up and down the mall. Even though I passed by Aunt Anne's Pretzel store many a time, there was no urge to purchase a pretzel. On my previous lifestyle change diets, I used a pretzel every Wednesday as a once a week junk meal to reward myself to sticking to my diet.

I went to the YMCA this morning to do a little aerobic workout. Even though the weather is getting warmer, walking around the block isn't cutting it for me. Since it was my first time back, I only used the treadmill at a very brisk walk. I did 30 minutes with no problems. It was also nice to break a sweat due to physical activity versus night sweats (which seem to be happening less and less). If it was warmer out and I had my golf clubs, I'd probably go to the range just to see how much I could do.

I also seem to have lost all the fluids I was given while I was in the hospital. I went into the hospital at 197 and came out at about 231. I weighed myself this morning and I was 192. I'm eating healthy and I'm happy that my blood sugar is consistent. I still have to get back to a regular schedule of eating my meals but I think I'm doing pretty good.

Bruce and I will be returning to Florida on Monday, March 17th. I'm looking forward to a little vacation as I will be returning in a few weeks  for a regularly scheduled doctors appointment with my PCP.

I've received some emails from some friends who wanted to know what type of surgery I actually had. I hope I can explain it well enough for you to understand.

The tumor was discovered to be partially exophytic (outside the kidney but inside the kidney sac) and its location was of concern since it was sitting near my renal vein.

The plan of action with options that Dr. Rukstalis and I came up with were as follows:

Partial Nephrectomy. This is where part of the kidney is removed along with the tumor. This was the preferred method to retain as much kidney function as possible based mostly on my age. My internet research found recent studies whose conclusions gave patients who underwent partial nephrectomy a slightly better 10 year survival rate versus patients who underwent total nephrectomy (total removal of the kidney).
 
When Dr. Rukstalis reached the tumor site, he determined that the location and the fact that it was filing in the gaps of where my renal vein branched off, that a partial nephrectomy would not be my best option. He explained to me that he would have had to remove half my kidney and that he wasn't confident the other half would survive after surgery.

Cryoablation. I ended up having this procedure. The word cryo means cold or freeze and ablation means excise or removal. This is the procedure where probes are inserted into the tumor and multiple freeze/thaw cycles are performed to kill the cancer cells. 

Dr. Rukstalis was part of a team that first started using this type of therapy for kidney cancer. It is still a relatively new approach with minimal studies to document survival rates.  Dr. Rukstalis published one study on 48 patients whose mean age was 62. I was satisfied with the risk/reward ratio after my inital office visit with Dr. Rukstalis and don't mind being one of the younger patients to undergo this procedure.

Dr. Rustalis determined that my renal vein was not invaded (I later read on the mri radiologist report that the radiologist came to the same conclusion) and that I was a candidate to have the renal cryoablation done.

I was told that the tumor was very vascular (blood supply) and that there was some loss of blood when the cyro probes were inserted into the tumor. I knew about the risk of "tumor seeding" with loss of blood so time will tell. I was told by Dr. Rukstalis that it was a very challenging procedure.

I'm very satisfied with the outcome of the surgery. The tumor (cancer cells) was killed (hopefully) and will be absorbed by my body over a period of time. My first MRI is scheduled in 3 months to see how I am progressing (absorbtion of dead cancer cells and to verify all the cancer cells were killed).

I'm still amazed by the advances in medical technology and the subsuequent applications for those technologies. I did research on the robot and even watched a partial nephrectomy on www.or-live.com. Even though a surgeons sense of touch is probably his best asset, the robot lets him get into places and be precise where he normally could not be with his hands.

Total Nephrectomy. This was the last option. This means they would have removed my entire kidney. Dr. Rukstalis told me that he hasn't know any patient to live more than 20 years after a total nephrectomy. I'm glad I personally know one man who is still going strong after a total nephrectomy more than 20 years ago. I also know one man who donated a kidney to his sister and he is going on 25 years.

I was happy that this option was not needed now.

Probably my only concern was that they would have to switch to open surgery if there was a problem which would have meant a longer recovery time.

I've missed some of the surgical advancements, two years too soon for arthriscopic knee surgery, but glad I was a candadate for the robot and minimally invasive laproscopic surgery.

Its been only a week after majory surgery with complications and I'm feeling quite well.

I must say that I have some great friends who have given me plenty of support. Their support really does make a difference.

I beleive I've been prayed for by so many people of so many faiths. There are prayer boxes, prayer baskets, prayer circles, prayer networks just to name a few as well as personal prayer. I've received cards notifying me of masses being said for me. I've also said a few prayers for myself as well as some prayers for some of the brave people I've met along the way.

I am also continually amazed at all the selfless acts of kindness being done for me. All my friends have offered their help if I need any assistance.  One friend drove my mother around town on errands when neither Bruce or I could drive the car due to illness. One friend and neighbor made a complete dinner for me and my family the day I was discharged. She knew my medical history and made a heart friendly/diabetic friendly dinner. Another friend and neighbor brought over home made salt free soup the next day.

I am very fortunate to have friends like these and am ready to return the kindness when needed.

Click for larger image	Kevin with Dr. Rukstalis. I shaved the beard off because I looked 10 years older than him, now I look 10 years younger.
Click for larger image	Kevin with Dr.K on the left and Dr. R on the right. Good sports as they were a little camera shy at first.
Click for larger image	Kevin, resting in the afternoon after having surgery in the morning. I think I'm looking and feeling pretty good at this point as I had only been awake for a few hours.
Click for larger image	Kevin resting during the afternoon after having surgery in the morning. Again, I'm feeling pretty good at this point a.
Click for larger image	Kevin and Bruce, day after surgery. This is where the pain and chills are kicking in and I start having complications.
Click for larger image	Kevin and Bruce, 4 days day of surgery.
Click for larger image	Kevin and Mom, 4 days day of surgery.
Click for larger image	Kevin, day of surgery. You see the small incisions used for the robotic laproscopic surgery. Glue is used to seal them. My right side is a little swollen but I only have discomfort when I use the spirometer. I haven't had the need for any pain medication since I was discharged.
Click for larger image	Kevin walking the halls. I received the nickname squeaky since the wheels on the IV transport squeaked as I walked down the hall. Everyone knew who was coming.
Click for larger image	TUG, the hospitals robotic delivery system. I believe it is used to deliver meds from the pharmacy to the nurses stations. It does everything, it calls for empty elevators, has voice capability to let nearby people what directive it is trying to execute. It stops when it senses a possible obstacle. Impressive, but my mother was too impressed as she had to run outside to see it in action every time it passed my room.
Click for larger image	Kevin, the day after surgery, getting transported for a chest x-ray.
Click for larger image	Kevin, four days after surgery. I'm not in pain as I'm trying not to laugh as my loving mother tells a joke. Revenge will be sweet as we are at MY HOUSE and I can use all those nice things mothers use like "not while you are under my roof".
Click for larger image	For my friends in Florida who haven't witnessed the phenomenon known as snow.
Click for larger image	Sydney, my English Springer Spaniel who I adopted from a rescue about 7 years ago. I miss her but I know shes having a good time with Gracie and Katie.
Click for larger image	Katie, Bruce and Gracies English Bull Dog. I think she is butt ugly but so lovable. She may look menacing but she is so person friendly. She's had more surgeries than me. Probably having a great time with Sydney now.

My sister.
 
I had a chat with my sister this morning and I couldn't stop laughing when we started talking about her writing skills when it came to updating my blog.  My intent for having her update my blog was only to report that I was out of surgery, what procedure I ended up having and how I was progressing with my recovery. When we spoke on the phone while I was in the hospital, she received the right information but somehow it didn't make it to my blog. I understand she was concerned but I'm glad that current circumstances allow for a little laughter now. I love my sister and I know she was doing her best and was concerned.

I just got off the phone with my friend Joanne who left a comment stating that she was glad she talked to me before she read my blog.  We both had a good laugh.

The same thing happened with my mothers friends and co-workers from Montefirore Hospital where she just retired from. As the story of my condtiion passed from person to person in the operating room, my condition got worse. Somehow, I ended up on deaths door. My mother started receiving calls from her friends including some of the surgeons, asking how I was doing.  

I know I could have gotten access to the internet while in the hospital and will probably bring my laptop the next time to avoid type of miscommuncation from happening again.

I must say that I feel like a new man today after a good nights rest.  My mind is definitely clearer now that I'm no longer taking pain medication. I do feel "recharged" so to say and ready to keep traveling down the road that I'm on.

I'd like to believe that I'm pretty good at analyzing the situation I'm in but have come to realize the my memory of events during my hospital stay are not clear at best and full of gaps.

There is one item that I'm sure of and that is my decision to put my trust in Dr. Rukstalis.

I had major surgery and then complications. I'd still like to believe I'm 18 and superman but that just isn't the case anymore.  I received excellent medical care while I was in distress and my medical team answered the challenge and I'm home today because of it.

Dr. Rukstalis had me pegged correctly when he told me I'm the type that wants to know everything. I'll get to ask him about my complications when I have a followup with him this coming Tuesday.

There are a few other items that I'm sure of. You either trust your doctors or you don't.  I trusted the chief resident and Dr. K. If I ever had to switch urologists and they were in my area, I'd be at their door real quick. Besides, as doctors go they were kind of hip and its just a bonus if you like them besides trusting them. I also trusted the three internal medicine doctors who treated me. Their level of care only reaffirmed my decision to swith PCP's in the middle of this ordeal.

Probably the only concern on my mind are the results of the MRI of my spleen. I don't particularly like the combination of PCP and urologist for a consult on something usually considered "general surgery".  I'd like to get the results from my PCP as I'd like to see how he handles giving news out. I'll be glad to finally get the results as the only person who keeps asking me about the results is my mother. I have the attitude of taking care of the present problem and then deal with the next as I know I have to recover before I can tackle anything else. My mother has a history of having my leg amputated, my kidney removed so I can only imagine whats going through her mind now LOL.

A special thanks to my sister for updating my blog while I was gone. I'm going to do a little rewrite to update my hospital stay as I saw it.

I arrived at the hospital in time to be checked in at the in/out surgical department. I was amazed at how many people were scheduled for surgery that day. I asked one of the nurses who told me that the hospital had 36 operating rooms and it looked totally booked today.

While I got checked into pre-surgery department  pretty quickly but then the waiting game started. Dr. K, one of the doctors on my medical team, dropped by to say hello and picked up my MRI CD and CT SCAN films. My surgery was scheduled for 7:30am but I didn't make it to the operating room until 8:00am. I wasn't in the operating room 2 minutes before I was out like a light.

From my past surgeries, I only remember the words "Do you know where you are Kevin?" but I remember speaking to Dr. Rukstalis who told me that to do a partial nephrectomy would have required to remove half my kidney and do a vein resection. Its a weird memory but while Dr.Rukstalis is talking, I'm visualizing a kidney being cut in half. He then told me they were able to perform the cryoablation of the tumor with the robot.

I was told my surgery lasted 5 hours. I don't remember what time I woke up in my room but when I did, I wasn't in any pain. 

I didn't feel any discomfort until I tried to use a spirometer at 8:30pm. A spirometer is a device that is used to measure how deeply a person can breath. A spirometer is also a device used to treat and prevent post op  Atelectasis (basically small pockets of the lung collapsing) At my first attempt to inhale, the muscles in my right flank start spasm and I have minimal lung capacity. My right shoulder muscles also start to tense up. I tell the  nurse and the doctor orders ben gay for my shoulder. I've been able to control the muscle spasms on my right side until about 12:30am. My right shoulder muscles are also starting to give me trouble again. I get up out of bed and go for about a half hour walk. I get instant relief from any discomfort but the pain gets worse as soon as I get back into bed. I tell the nurse and I am given morphine. That provides about an hours worth of relief and end up receiving a second shot around 6:00 am which also lasts an hour. I'm also very nautious and end up vomiting about an hour later.

At 8:00 am, I receive my first shot of toradol for pain. The doctors tell me that they had to wait to give me this medication until now to make sure I wasn't suffering certain post-operative complications. I'm happy that I'm finally getting relief and then the next problem starts. The doctors tell me its ok to get up and start walking and they want me to use the spirometer. My capacity isn't  that great but I'm doing it.

The doctors then want to lower my blood pressure and heart rate to help protect my kidneys.  They give me Lopressor 5mg and my blood pressure drops to something 90/50. I really don't remember the actual reading but but I'm told that I can't get up and walk until my systolic pressure goes over 100. I'm still in no pain as the toradol I'm continuously receiving is doing its job. My blood pressure remains low but then I'm given another 5mg of lopressor late in the afternoon. In the meantime, I'm being pumped full of fluid since some lab results determine that I'm dehydrated. I couldn't understand that I was dehygraded as I drank tons of water to flush my kidneys of all the contast I had the previous Wednesday and Thursday and continued doing that until Sunday.

By this time, I'm freezing cold and every muscle in my body is tensed up. I'm trembling so much and all my muscles are so tight that it feels like I'm going to snap my collar bones.  An internist is summoned to take a look at me who then tells me he will consult with the urologist. 

My mother and Bruce pile a ton of sheets on top of me and turn the room tempature up to 75. I remember waking up an hour later and while I'm not freezing anymore, I still have the chills.

The urology team shows up and the first thing they want to do is eliminate the possibility of me having a heart attack as my blood pressure has dropped to 80/50. I started to freeze again and was in agony as I laid there with  no shirt or covers. An EKG is done and its determined no heart attack.  I don't remember what came next but they were next going to try and rule out a pulmonary embolism or urinary tract infection.  After urinating and providing a specimen for the urine culture, the doctors scan my bladder and determine I'm still retaining urine and that they want to re-insert a catheder. I get real nasty when I'm not feeling good and give Dr. K an earful which includes a statement that is really hard to urinate when you have a crowd around you and are not feeling well. She doesn't change her tone, restates why they are doing it with not one scent of doubt in her voice. At this point, her demeanor calms me down and I feel confident in her abilities and would have followed her orders. Blood is also taken for some lab work.

I'm then sent down to have a cat scan. Let me tell you, its very painful being moved and at this point I really don't have any capacity to take a deep breath and hold which is needed for the cat scan. I end up being able to do it. The results determine that I'm not having a pulmonary embolism.

So in the end, heart attack, pulmonary embolism and urinary tract infection are ruled out. That leaves Post Op Atelectasis.  I'm sent for a chest x-ray which I had one already and its confirmed that Atelectasis is the most likely culprit which is causing my fevers.

I wake up the next morning around 2:30 am in a pool of sweat like I had just broken a fever. I remove my blankets and fall asleep again and then wake up about 6:00 am and have minor chills again.

One of the interns comes in early and asks how I'm doing. I tell her about the night sweats and chills and she tells me I don't have a fever.  She then leaves.

Two minutes later the nurse comes in to check my vitals and I'm running a fever of 101.5 or something like that.

I don't remember when this is done but my Lopressor dosage is lowered to 2.5 after a third dosage of 5mg is ordered but changed to 2.5 by a suggestion by sombody else on the staff. Loperssor 2.5 ends up being the correct dosage for me.

About an hour later the intern comes back with two other doctors and asks how I'm doing. I tell her that I'm feeling hotter than before. I'm actually sweating bullets right now. None of them come close to me to examine me and I call the nurse after they leave and then my tempature is something like 102.3.

I think that I'm communicating effectively and besides, my vitals should have been recorded in my electronic record already and should have been read before they walked in the door.  I don't know if that is the proper procedure but it sure seems logical to me.

From there on its just a case of building lung capacity which will hopefully relieve the post op Atelectasis. Each day from there on, I impove my lung capacity but still get the chills and fever. However, with each passing day, I don't get the chest congestion that I was getting the previous day.

I'm given the choice to leave on Friday but I feel its better to be safe than sorry as by this time I'm off antibiotics. My tempature was normal Friday morning but I did get a fever again after taking a shower.

I get another fever late Friday evening and ask for some tylenol, my tempature is 99 when I get up at 6:00 so I feel confident that I can continue improving.

One asset to Geisinger Medical Center is their nursing staff. They are truly professionals and treat each patient  very well. You could never tell if they were having a bad day and if you called for them, them came immediately and took care of your requests without blinking an eye. I've been in other hospitals where the nursing care was totally unacceptable and on a scale of 1 to 10, the Geisinger staff was an 11.

The internist comes to visit me before leaving. He orders that I stop my Liprinosil as that could damage my Kidneys. The urologist intern then comes in and gives me instructions for discharge.  I'm easy to get along with but I'm really frustrated as the nurse goes over discharge orders. On the orders are instructions to continue my Liprinosil. I'm told that if they are on the orders, you should start it even though I mention that the urologist agreed that I should stop the liprinosil. I'm really not in the mood to deal with this now as I am positive that both doctors told me to discontinue the liprinosil.

Anyway, as soon as I walk in the door to my house, I see all my  mail and a boquet of flowers from my friends and neighbors welcoming me home.

I am totally drained mentally and physically and retire to my bedroom where I let it all out cry tears of releif as this portion of my journey is coming to an end.

I want to thank all my friends and family who supported me through this portion of my life.

I see some more possible news in my future as my PCP did send me a message to me that the results of my MRI became available. He also told me that he was consulting with Dr. Rukstalis about the results.  I had asked the chief resident in urology if there was any news on the MRI I had taken as I did ask the lab to send results to Dr. Rukstalis office. I was told no.

I'm not in any real discomfort at the moment but I am tired. If you have my phone number, don't hesitate to call as I would love to hear from you.

I also got a big chuckle as my friend and fellow kidney cancer survivor Don sent me a care package. Don had a partial right nephrectomy done approximately a month ago at Johns Hopkins. There are a whole bunch of bags and each bag was labeled "Open Day 1", "Open Day 2". There was one bag which he said to open immediately. I almost died laughing as inside the bag was a spirometer and urinal. Thank you Don as I needed that laugh and I love you dearly and hope our plan to meet soon in Florida works out.

I need a couple of days to recover and to recharge my mental toughness to take on the next possible challenge.

I'll be doing some more posting as I become recharged.

HUGS TO YOU ALL!!!!!!!

Kevin's sister, Ronnie, is still reporting.
Kevin had another awful night.  Last night was riddled with pain and sweats.
This morning, a high fever indicated an infection.  Kevin is on antibiotics.
His blood pressure was also extremely low....and they were still giving him medicine to lower it!
Also, there are pockets in Kevin's lungs that remained collapsed. 
When I spoke to Kevin this morning, he was still feeling the effects of the lousy night and
his body's reaction to surgery.  The urinary tract infection is a result of the stent.  This afternoon,
Kevin was in brighter spirits because his nurse, mother and best friend did their best to make him laugh.
He needed it!  He was hoping to get on the laptop, but it wasn't really doable.
So.....here I am again.  Tonight, Kevin is optimistic about being released tomorrow. 
He wants to get back to his place.  Of course! 
I  know I'm not as technical and medical as Kevin is, but I was able to get onto the blog!
Looking forward to hearing Kevin had a good night's sleep and he is on his way home....
In the meantime, thanks for all your support!

Hi, All.
Still Ronnie reporting.
I spoke with Kevin twice today.  Unfortunately, he had a lousy night.
He was not given any pain medication till 8 this morning.
Today, although he was sitting up out of bed, he was tired.
He had no specific message for the blog other than he expects to go home
tomorrow.  He is hoping to have a good, peaceful night's sleep.
So...hopefully, tomorrow's entry will come directly from Kevin.
Thanks!
Ronnie

Hi, Everyone.
Ronnie, Kevin's sister, reporting....
Kevin is back in his hospital room.  He is still feeling the effects of the anesthesia. 
Good news is the tumor was small.  Unfortunately, it was sitting on top of the renal vein.  
The surgeon felt removal would have resulted in loss of the kidney. 
The cryoablation was performed.
So...although I haven't spoken with him directly, Kevin is doing okay.
I suspect he will be sleeping off the anesthesia for the rest of today.
When I get more information, I will post it.
In the meantime, Kevin is awesome...and he is recovering!
Thanks.
Ronnie

Its  5:00 a.m. Tuesday morning. I have to be at the hospital 6:00 am. My surgery is scheduled for 7:30 am. It should take about 3 hours. We arrived at the hotel last night around 6:30pm and then had an enjoyable dinner. I was relaxed but could tell my mother and Bruce were a little uptight. I managed to sleep solidly for about 5 hours which I think is pretty good.

I've been looking forward to the surgery for a long time. I'm totally calm right now, no tension, just looking forward to actually leaving the hotel and walking across the street. My blood pressure is 121/82.  I'm sure my blood pressure will rise a little once I get checked in but I trust and have faith in Dr. Rukstalis and his team.

We had an exchange of emails the other day and he thanked me for his trust. I haven't told him yet but he made it easy for me to trust him. I'm not the easiet person to win over but he did with ease. I knew his qualifications but I also saw all the hard work he has done to make the patients comfortable in the urology department.  The one thing I was aware of is that Dr. Rukstalis knew exactly what I felt and what I was going through with this disease and he treated me as well as the disease.
 
I want to thank all my friends, family, fellow cancer patients and supporters for all their messages, thoughts and prayers. It does make a difference!!!!!!

I scheduled for a partial nephrectomy via the da vinci operating systems robot pictured below. I'm a high tech guy by nature and I was amazed by its capabilities when I watched the operation on or-live.com

I don't know how I'm going to feel when I wake up in the hospital room but I do want to get out of bed as soon as I can. I'm also hoping to play in my clubs club championship in April. I won't be any good but all I want to do is play.

My sister will be updating my blog later with an update.

BYE FOR NOW!!!!

Its been a  mostly  uneventful weekend. The snow came on Friday afternoon and we received about 3-4 inches locally.  My only dilemma was that I had promised to pick up my friends/neighbors from the airport  that night.  They were coming back from a month long vacation in Arizona. Normally, I would be picking them up from the airport in Fort Myers, FL as my friend is my guest in my golf clubs Member/Guest  tournament. I had a little fun with them on Wednesday as I sent a picture via cell phone of Sydney (they love her) and a picture of their house with all the snow around it as a friendly reminder that they coming back to the harsh reality of winter in State College.  Their flight was not scheduled to get into State College until 8:00 pm. The snow plows came through my development around 6:30 pm so I figured it couldn't be that bad.  Its probably been over 10 years since I've driven in the snow but I should have returned to my garage when I had trouble getting up two hills in my development. A rear wheel drive Lincoln Town Car is probably not the best vehicle for driving in the snow. The roads were far more dangerous than I had anticipated but I continued anyway. The fun started as I was going to merge on the 322-bypass. The entrance ramp has an incline and I was probably going a little to fast but when I got to the top of the entrance ramp, I fish tailed, lost control and ended up doing a 360+ and came to rest facing the wrong way at the end of the entrance ramp. Fortunately, no other vehicles were around at the time but it did take me about 5 minutes to get it turned around as traffic passed. I had no other trouble but it was still a little nerve racking. My friends and neighbors know my condition and that I have my surgery scheduled for Tuesday. They know I don't want to do anything that could get me sick and possibly postpone my surgery. Before I had a chance to even think about clearing my driveway of the snow, 3 of my neighbors took care of it. I'm very fortunate to have friends like this. All my friends have offered their assistance if I need it and knowing that kind of help is available has made my experience much easier to handle. I also contacted my primary care physician on Friday. I let him know that my blood sugar levels were getting to low. I was testing in the 60's and 70's two hours after dinner and a dosage of my medication.  One of my goals is to get into better physical shape and to reduce the amount of medication I have to take to control my diabetes.  I have also made lifestyle changes to my diet and upgraded my exercise program. I had a goal to be under 200 pounds before my surgery and I weighed in at 197 yesterday. My primary care physician reduced my diabetes medication in half and I am very happy with that. My next regularly scheduled visit with him is in April and I'm confident that my LDL will be back in line and that he will reduce my cholesterol medication. I also sent my primary care physician a message this morning regarding MRI I had to further evaluate my spleen. I have not received the results of the MRI and I was hoping to get the results before my surgery.  I'll be posting one more time before my surgery on Tuesday morning from my hotel room.  I don't know if I could use my laptop in the hospital so I will be having a guest writer (my sister) update my blog with the results of my surgery so my family and friends will be able to find out what procedure my doctor performed and how I'm recovering.

I'd been looking forward to this day for a long time.  I was going to have some very important tests to determine the status of my kidney cancer. Since I was first diagnosed with kidney cancer in December, I've gone through a gambit of emotional states. There's been denial, why me, deal with it, acceptance, fight and live with it.   The support I have received from family, friends, medical professionals and other cancer patients has made me realize that the emotional states I went through was just a natural progression after hearing the words "you have cancer".  The one thing I never did was second guess or regret any of my lifestyle choices (smoking, diet, work habits) when I was in my 20's or 30's that most likely contributed to my current diagnosis. My first test today was a bone scan. I arrived at the hospital an hour before my 11:00 am first appointment where they would inject a radioactive tracer. I would then have to wait 2 hours before any pictures were taken to give the tracer time to get absorbed by my bones. When I came back the scan took about 40 minutes. My second test was a CT scan of my chest with contrast. The technician was preparing to insert an IV to a vein at my wrist when I stopped her cold and asked her to use a vein by my elbow.  This whole test took about 10 minutes. I then received a suprise visit from one of the radiologists in nuclear medicine. I was asked to come back to have a few images redone from my bone scan. I was a little concerned as he explained there was a spot on my right scapula that they needed to explore further to determine if  it was an artifact, anomaly or an issue to be concerned about. Geisinger Medical Center is a teaching hospital. Most of the professionals I worked with in radiology were on the young side. I found it rather refreshing to be surrounded by young professionals and interns who were eager to teach and learn as well as make sure all my needs were met.  When I came back to radiology, I was put on a different scanner. I had drawn a crowd of about four or five people who were interested in why I was getting scanned again.  I assumed most of them were interns and had a little fun with them as I asked them for $1 if they wanted to watch and for $5 if they wanted me to put on a show.  The scan took about 10 minutes and I spoke with the radiologist afterwards who assured me everything was ok.  My next appointment is with my surgeon, Dr. Rukstalis (pictured with me on the right).  We were going to discuss the results of my tests and review my plan of action.  During my first visit with Dr. Rukstalis on January 18th, I was quite aware that I had to make a decision to trust and have faith in him and his staff.  I did my research on him and even listened to a podcast of him being interviewed on the topic of  how to choose a urologist.  He made enough of an impression on me where he did gain my faith and trust.  It has been a long wait from my first visit to this point.  Probably the most important factor that kept me at ease during the wait was my faith and trust in Dr. Rukstalis. The man just reeks of enough confidence for two when he opens his mouth to speak. His experience with my disease really showed during my first visit and he only reaffirmed that during my second visit.  During my first visit I was doing everything I could to get a read on him. I had no need to try and read him this time as I had total confidence in him.  We go over the bone scan and chest scans first. I'm clear on both counts. I told him his credibility with me just tripled but in reality it only reconfirmed my trust and belief in him. I would not have lost any faith and trust in him if he had been wrong as he did put a probability on his assessment that I was clear.  We then discuss the stent that is going to be inserted to take care of the non-obstructing kidney stone that is positioned outside my left kidney. He explains the procedure and why we are dealing with the issue along with the pros and cons of what could happen. I was told that the usual maximum time the stent could be left in is six months if I tolerate it. He was a little hesitant to tell me what would happen if the stone did not pass but I think I surprised him when I asked him if he would have to go up and grab it if it hadn't passed by then.  We then go over the plan of action on the tumor in my right kidney.  I had the CD of the MRI study of my kidney that was taken the day before. He commented that I was the type that wants to know everything and he was right about that. He loads the study on one of the computers and we start talking about it. I must say that I like viewing this type of information on CD versus film.  I understand Dr. Rukstalis's explanations better since I can actually see the tumor and organs rotate on the screen as we go from picture to picture. I was hoping to get a better idea of where the tumor was in relation to my renal vein. Dr. Rukstalis pulled up a picture that showed exactly that and he explained that it looked that there was plenty of margin to where a partial nephrectomy could be performed.  I also realize that the partial may not be feasible and that I may undergo the cryoablation or even a total nephrectomy. I know Dr. Rukstalis has to make the call when they actually get to my tumor but I have total confidence in his experience and ability.  I had quite a few questions written down but most were answered during his explanations and I only had to ask a few. I was told that I would most likely be released from the hospital on Wedensday if everything went ok. I was surprised that he told me I could play golf 3 days after but said that it would probably hurt like hell.  I'm the aggressive type but I have no problem in letting my incisions heal for a time before I try anything that put me at risk for further injury.  I don't think I'll try lifting weights for a while but would like to get back to my aerobic exercises quickly.  My next stop was to get inverviewed by anesthesiology. A nurse basically profiled me so that  the anesthesiologist  knows my medical history.  I'll get to meet the anesthesiologist Tuesday morning. I've had surgery before and general anesthesia  but I always get a chill as the last words they usually tell you before they leave you is what bad things can happen to you while under anesthesia. Afterwards, I went over to the local inn across from the hospital and booked two rooms from Monday and Tuesday night. It was a long day, not mentally draining but I crashed and fell asleep around 9:00 pm as I got home around 8:30 pm. I'm feeling great now as everything is coming together. I was concerned in the time frame from when I was first diagnosed to my surgery but am satisifed at the moment since it doesn't look to have had a negative impact on my condition.

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The first item on my agenda this cold Wednesday morning was to get some lab work done for my upcoming surgery. When my date for surgery was set, the nurse told me that she was going to mail me orders for lab work which had to be done within 30 days of my surgery.  I asked her if it would be acceptable for her to send them to the lab at my PCP's office since my surgeon and PCP are in the same medical group but just in different offices. She agreed to do this but after I checked in at the lab, there were no orders on file for the lab work.  It took about 15 minutes but the lab called the surgeons office who electronically ordered the lab work and I was out the door a few minutes after that. 

My next stop is to have the abdominal MRI. I had spent about 20 minutes on the phone with the imaging center yesterday going over my medical history.  The abdominal MRI was scheduled by my PCP to further evaluate the lesion on my spleen which was discovered as a result of a CT scan I had on 12/14/07.  When I arrived at the office and spoke with the technician, I also requested that protocols be used to enhance the images of my kindneys. She was sympathetic to my request as I explained I was having surgery the following week and wanted my surgeon to have the latest available study of my kindneys.  She agreed to use both protocols so that clear pictures could be obtained of my spleen and kidneys. 

The technician also asked me for the name of the imaging center who performed the 12/14/07 CT scan.  She stated that they needed that study for comparison purposes. I stated that I had the CD at home as well as the report and that I would have made a copy for them if they had requested it the day before.  I then agreed to deliver a copy of the CT scan as well as the radiologist report of the 12/14/07 CT scan by close of business.

Its been almost 2 years since I've had an MRI. My MRI was to be done in a closed model MRI. I didn't have any problems last time but as soon as they got me into the MRI, I started to have trouble breathing and asked them to let me catch my breath for a few minutes.  There are literally inches between your body and the unit.  For comparison purposes, think that you are in a coffin with only two inches of room between your body and the walls. My sinuses were a little clogged due to the weather change as I think that was the reason behind my momentary panic attack.  The technician was top notch and reminded me that it was mind over matter while giving me a little pep talk.  I had no problems the second time I was put into the MRI and I ended up spending 1 hour and 15 minutes inside the MRI. When it was over, it only felt like 20 minutes had passed. The only part of my body that was sore were my shoulders as you have to lay with your arms above your head.

I went back into the waiting room and 5 minutes later, I had the study on CD as well as my lumbar MRI study from June 2005. That study includes abdominal pictures but I doubt they have enough clarity to reveal a kidney tumor but I figure my surgeon could take a couple of minutes to look.  

Tomorrow is a big day. I have a bone scan, chest CT scan, doctors appointment as well as surgical orientation. I'll probably leave aroud 9:00 am and get back home between 8:00 pm and 9:00 pm.

Well, it was a great three weeks in Florida!!!!!!!!

I managed to relax and have a great time with my friends and family.  I started to do things that I normally would not have done. You know what I mean, you say to yourself, "I'll do that next year" but you end up saying that every year.

A good friend of mine had an extra set of tickets to the Champions Tour Ace Group Golf Classic in Naples. I invited a friend to go and we both had a great time.  When we arrived, we went right to the range to watch the pros warm up. I must say, they make the game look easy. Every swing seems effortless and the ball seems to travel a country mile. Even when they were warming up with wedges, the trajectory control they had was amazing.  I'm looking forward to attending next year and will probably follow a favorite of mine around the course for the whole 18.

I did play a ton of golf. I seemed to get worse the more I played. When I arrived, I went out and played 9 holes in a monstrous wind and shot 4 over par 40 which wasn't bad since the only instrument I picked up was a shovel the previous month. After that, it was a struggle but I was all about having fun and enjoying the time spent with friends.

I usually don't play in any of the Couples Events since I'm single but the Garden Club sponsored an Arbor Day Scramble and I saw there was a space for a single so I signed up.  I had a great time and I thought we played pretty well as a team but we didn't place in the money. The event included a wonderful dinner and I learned that I could eat well once in a while and not get into any trouble with my blood sugar.  I might look for one of the single women to play with in the events when I get back since I had so much fun.  I was even lucky enough to win a raffle for a small door prize which consisted of a basket of goodies.

I also got into a little trouble during the dinner portion of t he Arbor Day Scramble. There were a few tennis players at the table and one thing let to another and I was invited to play tennis the next day. I had only played tennis once before and that was about 15 years ago. I thought it was going to be just the two of us hitting balls while I get some pointers. I got suckered into playing doubles with some of the better tennis players at the club. Needless to say, I was a fish out of water and after a few games I was glad to be shown the door as they exiled me to another court with the ball machine so I can hit balls by myself. I liked tennis enough to take a lesson from the pro a couple of days later. One thing I liked was that it was a better aerobic workout than golf and it was fun. I also know alot of the tennis members and they always seem that they are having tons of fun.  I plan on playing alot of tennis when I recover from my surgery.

I received alot of support and many well wishes from my friends at the club.  A few members that I did not know personally came up to me offered their support and wished me well. I consider myself back to normal emotionally but I almost shed a tear or two while all my friends wished me the best as they shook my hand or hugged me as I exited the dining room after playing my last round of golf for a while. If I had stayed any longer, I probably would have cried.

I was also saddened by some bad news. One of my friends received some bad news from his doctor as the cancer he had successfully battled recurred and his prognosis was not good.  While I know how he felt when his doctor told him he had cancer, I still can't imagine what he is going through now. I like this man and judging by the way he is acting now, he has also become very inspirational. He's a fighter and I hope he wins the battle again.

It was a long day of traveling from Florida to Pennsylvania. I booked two seats on a 7:40 am. flight out of Tampa for my best friend Bruce and myself. Bruce's wife took us up to Tampa.  We left Punta Gorda around 4:15 am and ended up walking in the door around 2:00 pm. The flight was delayed 20 minutes from Tampa to Philly and the commuter flight was delayed about an hour.  I sure did miss my friends and neighbors who had turned up my heat the day before I came back in January as my house was cold as I had set my thermostat to 51 degrees.  It only took a few hours to get up to temperature but I sure was tired after a long day of traveling and then having to run out to do some grocery shopping. About the only thing I like about grocery shopping in Pennsylvania is that I always seem to have more money in my pocket afterwards as compared to shopping at Publix.

Now, on to the business at hand........

I'm in Florida. I made good time driving and arrived early Wednesday morning. The part I hate the most about driving back and forth is the fact that it takes a little over 5 hours to get home once you cross the Florida state line.

The first thing I did when I arrived was to go the back of the house so that I could enter through the lanai. Sydney likes to lay on her pillow looking down the canal so I was hoping to catch her by surprise. I saw that Sydney was not on her pillow but was resting on my lazy boy.  I cracked open the sliding glass doors and whispered "where's my baby girl?". Her head popped up and she came running. I was kissed for the next 10 minutes and she wouldn't let me stop rubbing her belly as I got down on the floor to pet her. It felt good to be home and was glad to be with Sydney again.

I feel that I'm finally feeling "normal" again.  I don't know if its courage or stupidity but I'm not really scared of my upcoming surgery and subsequent life of living with cancer. All I can do is to be in the best physical and mental shape that I can and then let the chips fall where they may. I don't ever want to say years down the road that I didn't give my best effort. The only issue that has given me concern is that sometimes I've let my emotions take over my thought process and have definitely said and done things that I normally wouldn't do.

My vacation plans are simple. I'll continue my diet and exercise plans and play a ton of golf.

I've enjoyed being around my friends at the golf course again. Many were surprised to see me and a few already thought I had my surgery. They have been a great source of support.  I was a little sad since the sign up sheet for the upcoming Member/Guest tournament was up in the pro shop. My friend and next door neighbor from Pennsylvania was going to visit again this year and both of us were looking forward to it since we both had a great time the year before.  I also haven't played to bad considering I hadn't played golf in over a month.  Another sign that I back to normal is that I'm back to buying and selling golf equipment again. I purchased another set of irons and a driver. I like my current bag setup but still like to try new equipment.

I believe I have everything set up for my upcoming recovery from surgery. I upgraded my home network to wireless and ordered a new laptop from Dell.

I'm also in the process of getting some other health issues evaluated. In addition to the bone scan and chest ct scan that I have scheduled for 2/28, my primary care physician has ordered an abdominal MRI with and without contrast to evaluate a lesion that is on my spleen.  I still don't have the date but I requested 2/27. I called the nuclear medicine department at the hospital as well as my primary care physician to make sure any contrast I take on 2/27 will not interfere with the tests on 2/28 and was given the green light to have the MRI on 2/27. The MRI will be available for the urologist to access on the Geisinger information network so all the more better for me if he has a clearer picture of my kidney before surgery and I will get to ask a few more questions. I'm really not that concerned about the spleen at the moment since the kidney surgery is at the top of my priority list. 

I will probably not post much on my blog for the next few weeks but will be back to posting regulary when I get back to Pennsylvania for testing and the surgery. Maybe I'll get a little more creative and add video.

Until then, BYE FOR NOW!!!!!!!

There used to be a time that I was much younger than all my doctors. I think I must be getting old at 43 since all but one of the doctors I have seen since this adventure has started happen to be younger than me.

Today was my first appointment with my new cardiologist. I spent more time with him today as compared to the cumulative amount of time I spent with my previous cardiologist over the span of 2+ years. I don't know if its because we were close in age but we seemed to get along just fine.  I haven't  been disappointed yet with the quality of the professionals at Geisinger or with the quality of care.  His nurse was also top notch as we had a pretty good conversation as she took my vitals before the doctor came in to see me.

One item that I was happy about was that my new/old diet and workout program is paying off. I've lost 9 pounds since my last office visit on 1/22.  My blood sugar has also stabilized as I have been below 120 99% of the time.  I'm also happy that my body has adjusted to some medication changes and that the side effects I was experiencing have dissipated.

He also laughed at me (with me) when I told him about the 15 minute goal on the tread mill during the stress test. 

The bottom line is that I've been cleared for surgery.

I had an appointment on Wednesday to have my blood pressure checked but asked the doctor if I really needed to come back in two days to have somebody take my blood pressure. He told me my blood pressure was fine and that it would be ok if  I canceled the appointment.

Since my next appointment(s) are scheduled for February 28th, I'm leaving tomorrow for Florida. I'm looking forward to seeing Sydney. I had Bruce and Gracie take her to the vet for a checkup and she passed with flying colors. I see a few weeks of fun in the sun before I get back to business. I'm already signed up to play in this coming Fridays mens league at the golf club that I'm a member of. I was told that a lot of my buddies were happy to see my name on the sign up sheet.

I also found out today that my records have still not been scanned into the system. I originally filled out the paperwork required on 1/7/07 to have them transferred from my previous health care provider. I asked if they had a medical records department so that I could check to see if they received them but was told that was not possible.

I also decided to leave my PCP a present when I left. I faxed him some medical records that I don't think will be included in the records he receives from my previous health care provider.  I'm sure I'll end up with more than 7 future appointments on my agenda as that is how many future appointments I have. I guess I must be getting old if I have 7 doctors appointments scheduled.

I received news on Wednesday evening that my friend Don had been cleared for Thursdays surgery. I was happy to be included as a friend and on his email list for health updates. Dons surgery was successful. He should be home from the hospital on Saturday if there are no complications. I curious to see how talkative he will be during his first few days at  home.

I sent him a Kidney Cancer Survivor cap with an inspirational note included. I believe the term survivor fits Don well as he is approaching his life with cancer in a positive manner.

I'd consider this to be another coincidence, but I would have picked the same surgeon and hospital (Johns Hopkins) if I didn't trust my current surgeon.  Who knows, we could have been room mates at the hospital.

I have a lot of free time until my next appointment so I have been trying to anticipate my upcoming needs as I live my life with kidney cancer. I've been creating a check list to make sure I have all my bases covered.  I have my living will and will in place should I happen to need it. I will have my best friend Bruce by my side when I travel back from Florida to help me as I recover after sugery. My mother will also travel to Pennsylvania to help me during my recovery. I live approximately one and a half hours drive from the hospital in Danville and am making sure I have hotel reservations for Bruce and my mother so they don't have to travel back and forth the few days I should remain in the hospital. I also hate to say that I have a large medical file on myself in my office at home. I never thought I would need one but I ordered a medic alert necklace to wear after I have the surgery just in case I have an emergency and am unable to communcate my medical condition to the emergency personel.  I ordered a cheap one listing my conditions and included "partial right nephrectomy" on it as I am hoping that will be my surgical treatment. I will have to ask my surgeon if he considers cryoablation to be a variation of a partial nephrectomy. I still realize that I might have to get one that says "total right nephrectomy" but I'm still thinking positively.  I researched the different companies offering this type of service and I will order one from the Medic Alert Foundation as I like what they offer the best. I can update an online medical profile, have a condition card in my wallet as well as have some information engraved on the bracelet. I don't know what the outcome of my surgery will be so I want to wait until after my surgery to order from the Medic Alert Foundation. I've been researching what I could expect to experience during my recovery period after surgery.  I'm very motivated to recover as quickly as possible but realize that I don't have to push myself to do it.  I'd love to get back into my exercise routine as soon as possible but realize that might take a long time before I'm cleared for that type of activity. I've also realized how fortunate I am to be alive today. I found a photo depicting the state of my heart before and after my cardiac catherization and subsquent angioplasty and stenting. I still remember that I woke up at about 5:00 am with some discomfort. I had no problem walking and put on a pot of coffee. I never really had any chest pain but after about 15 minutes I called Bruce's wife Gracie (an RN) who came over to the house, took my vitals and recommended that we call 911.  She never mentioned heart attack but made me chew an aspirin. I was stubborn and really didn't believe anything was seriously wrong with me. It took about another 5 minutes but I started to turn white as a ghost and it felt like the dentist was pulling my teeth out. I didn't have the classic pain in the chest or arm but did realize I was in deep trouble. I still didnt' want to call 911 and was driven to the hospital by Bruce in record time and was subsequently stabilized within minutes by the staff in the ermergency room.  I'm still amazed by the 99% blockage in two places and that I didn't die right then and there. You can clearly see how narrow my arteries were before and how wide they are after the procedures. This picture is pretty big so you might have to roll your mouse over it and click on the icon that will appear in the lower right corner to supersize the photo. I have some other things on my list and I'm sure I'll find other items to add also. I've always been detailled oriented when I worked and I will be approaching living with cancer the same way.

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There are many cancer support mechanisms on the internet.  When a person receives a diagnosis of cancer, one of the first things they will do is to look for information on the cancer that has invaded their body. They may get information from their doctor, find a local support group, rely of family or friends, a library but they will inevitably  end up searching the internet for information.

You definitely have to be in the correct frame of mind to search the internet. Unfortunately, when a person is first diagnosed, nothing but bad thoughts are going through their minds. They lack the proper information about their disease and will read tragic stories and have fantasies of their own demise.

If they are fortunate to come across a reliable data source, they will find the information they seek or find out where to get the information they need to deal with their health issues.

One of the most common methods to share information on the internet is called a forum.  Each forum will have different areas of interest and members post content with various subject titles.

One item that I learned rather quickly is that cancer patients stick together. They will do almost anything to help each other out. When a person finally has the courage to post and introduce them self to the cancer community, it is almost a certainty that someone will post a "I know its a terrible club to be in but Welcome to the Club".  From there, other cancer patients will share their experience and sources of knowledge to help the new member out. While each persons experience is different, their stories are almost exact copies of each other.

There are also other vehicles for support. My method is the blog. I share my personal experience with anyone who is willing to read it.  I purposely reference reliable data sources such as the Kidney Cancer Association so that readers get pointed in the right direction.

I haven't checked for a little while but I've had over 2,000 hits on my blog in the first 14 days. To me, thats a whole lot of people who are reading my very personal thoughts and feelings and hopefully gaining some information on kidney disease.

One of my goals was to help other cancer patients. I wanted to share what I was feeling and to show them that they are not alone and that others have had the same emotions that they are experiencing now.

I've been in contact with a new member of the club for a few weeks now. He found my blog through a google search. He had just been diagnosed with probable kidney cancer and was looking for information. 

Our stories are eerily similar in nature. We have both been diagnosed with cancer in the right kidney, with approximately the same location and approximately the same size.

His name is Don. He posted some comments on my blog. I emailed him and eventually we became fast friends and email pen pals. I just had my first conversation with Don on the phone today.

I guess I'm a little more experienced as I was diagnosed on December 7th and he was given a diagnosis of cancer just last Thursday.  Don found my story very helpful as he was going through a lot of the same issues that I did. He knew he wasn't alone in how he felt. 

Don has told me that I have a very positive attitude towards life with cancer and that I shared a lot of information about cancer in my blog. Don also has a postive attitude towards living his life with cancer. I know I was not like that in the beginning as I was fortunate to have a  doctor who reminded me that life isn't over when you receive a diagnosis of cancer.

I don't consider myself a writer but Don thought my writing skills were professional in nature. Don happens to teach writing skills on the college level at a major university. I was happy to receive such a glowing review as I do try to make the reader feel as if they are standing right next to me.  I guess I now know where to enroll in school if I need some extra college credits. I have received comments from my friends that they now feel they know the real me and that they feel that  they are actually walking in my shoes.

While I haven't met Don in person yet, we did exchange photos and we were planning to meet in Florida as we were both planning to be within 40 miles of each other during Presidents weekend in February.

Our plans to meet have since been delayed. Don was fortunate enough to be referred to a highly respected surgeon at a top notch hospital and had his first appointment last week.  Don's surgeon recommended surgery as a treatment option and as fate would have it, the surgeon had a patient cancel a surgery for this upcoming Thursday and Don was offered and took the slot.

Don has been suffering from a cold for the past week. Don was told that his cold must be gone by tomorrow otherwise he will not be cleared for surgery. He sounded pretty good on the phone so I hope and pray that he will be cleared and have his surgery on Thursday as planned. I know by personal experience that I felt a burden lifted from my shoulders when I recieved my surgery date and I'm sure Don feels the same way.

I'm usually not that outgoing on the phone but we talked like we knew each other for years. We shared our experiences and probably learned a little from each other. Don says it will be his turn to help me now since he will be an old pro of the recovery phase by the time I have my surgery. We are already planning to meet in the near future when both of us have healed enough to make that a reality. I'm looking forward to meeting his loving wife Jen as the pictures he shared telll a story of true love.

We have each sent each other a gift. Dons gift to me should arrive this Friday and I've been told it will be sweet. Don should receive my gift within the next couple of days.

Hey Don,  "I know its a terrible club to be in but welcome to the club!!!!!!"

Best of luck the next couple of days.