Ladies and Gentlemen.........I've been meaning to do this for a while, while this isn't the entire story this is a very good chunk of it. I thought I would share it with all of you, so that hopefully I can help someone else. You see, several months ago my "wife" left me out of the blue and well, quite honestly, I was devastated. Yet another blow to me and my life, but, I'm determined to be the best person I can be and part of that means sharing with others, to try and help. So, I hope this finds you well and somehow, somewhere thru it all, I can help someone in even some small way.
So here goes, a little long in the tooth but I feel important enough to share with you. Enjoy the read! This was written in January 2012, so there is more to tell..but, for now, this is plenty. Since this was written I've had 14 bouts with Pancreatitis, which has subsided since and *knock on wood* my health is fine. I love my J Pouch and all the great friends I've met and helped along the way!
This is the story of how I came to be diagnosed with Cancer and FAP (Familial Adenamotous Polyposis)/Gardner’s Syndrome at age 34.
The onset of FAP/GS was a complete surprise to me in July 2004. The whole change in my world began when I noticed I was feeling sleepy a number of months prior to July, to the point I wanted to lay my head down at my office during normal business hours. I also had a mad craving for ice, I’d chew many, many cups full of ice on a daily basis; so much so that it began to get Whitney (girlfriend at the time, now my wife) to ask me what was going on. I told her I didn’t know, but, that I was making an appointment with my General Practice/Family Doctor because I knew something was wrong, thinking it was something simple. She was impressed that I did that on my own! I went and saw Dr. Pascal, my family practice/GP doctor; explaining to him the “symptoms” and said to him “This is nothing, right?” His reply was that he didn’t know, but, that we would find out together and he would take the lead to get this riddle solved. Ultimately he helped save my life.
He made several appointments for me with Specialists, one which included a Hematologist/Oncologist. I can’t recall the Doctor’s name at the Hematology practice, but, they did the usual drawing of blood and did an in-office testing of said blood. I was sent out to the waiting area, I was out there reading magazines, etc.. and the nurse came and got me. I presumed to follow her to the “room”. The Doctor told me that there were some definite issues with my blood work, I was anemic. I ask what that meant and how they determined that. He said my hemoglobin was 4 or 5, but, “normally” should have been like 14 to 17 or so. He said it was a miracle I was alive, much less doing all the activity I had been doing. I was obviously in a state of disbelief. I ask “Where do we go from here? What’s next?” The doctor said “We need to find out why you’re anemic. Dr. Pascal will be back in touch with you, so will we with your next steps.” I was sent off with instructions to eat plenty of iron rich foods and some supplemental pills.
My memory of the exact timeline of the next appointment escapes me, but, suffice it to say my appointment for an Upper GI Series was very quick after my Hematology Appointment. I was sent to have an Upper GI performed and had to endure my first run in with barium. Yuck. That stuff is nasty, no other way to slice it. Necessary, but, nasty tasting just the same! I followed the prep instructions given to me, showed up and did what they ask of me. No immediate results were given, just a “we’ll be in touch, shortly”. I get a call from Dr. Pascal’s office. He made an appointment for me to have a Colonoscopy in the next few days, which I ask “What’s that?” Of course they explained it, not in graphic detail, but, enough to where I got the idea. Then I did some internet searching and figured out what was going to happen, but, not sure why.
The day before the colonoscopy I followed the prep instructions, drink this magic juice called “PhosphoSoda” and prepared for a long evening on the toilet! I had never experienced anything like that ever before, but, I did as instructed. We show up the next morning at the hospital for the procedure, I get checked in. Then they call me back to the prep/procedure area. I speak to Dr. Schmitz (the Gastroenterologist), who just so happens to only be a few years older than I am; who explains the basics. They wheel me in the procedure room, I get asked to tell them my name, who I am and what I’m there for. Next thing I know, I’m waking up in a recovery room. Whitney is comforting my hand by rubbing it gently. I can tell by the look in her eyes, something is amiss. I just don’t know what. Whitney begins a little bit of breaking down and I said to her “Whatever it is, we will get thru this. I will not go down without a fight.”. She nods in agreement. I’m told to come back to the GI’s office for a follow-up tomorrow at 4pm. I think to myself “Wow, that’s a pretty quickly made appointment” and continue on with my thoughts of ‘something’s amiss’; yet not even having a true clue of what was about to be revealed to me the following day.
Whitney and I head home, I’m groggy and a bit in a daze from the medications. We get home and have a relaxed evening. I finally get to eat some solid food and drink fluids too! Amazing how one misses that, even if only for a short time!
So the next day, people at work ask “How did it go?” and I truly have no answer, I tell them the procedure was successfully performed, but, that I have a follow-up this afternoon. Whitney and I meet at the GI’s office. Anxiety is setting in a little bit for me, because I know something is amiss, just not what. They call me back to sit and wait for Dr. Schmitz. He comes in and tells me how the procedure went, and then says “You have a very rare disease called FAP/GS. There were thousands of polyps in your colon and that’s why you are anemic.” He then proceeds to tell me the basics of FAP/GS and instructs me to do some research and that he’s making an appointment with a surgeon the following day, Dr. Rosen @ Charlotte Colon and Rectal Surgeons as I need to consult with him about having my Colon removed due to the thousands of polyps. He told me that upon discovery of the polyps in the procedure room, he went and got several of his colleagues and such to show them a real live case of FAP/GS. Dr. Schmitz indicated he had seen a few cases during his internships/residency but nothing on the scale of what my colon looked like.
Obviously I was floored. I had no clue that any of this had been going on and was stunned, there really is no other way to say it. But, I knew I wasn’t just going to toss in the towel. I was determined to face it head on and fight on. It was right there and then, I decided that I would make my stand; win/lose or draw. I would prevail one way or another.
Upon getting home, I did quite a quick researching of FAP/GS and was overwhelmed with what I learned. Wow, what a mind blowing amount of information that I had to learn and try and make some sense of. I wanted to know as much as I could prior to seeing Dr. Rosen the next day. I stayed up well past my “usual” bedtime reading, reading, reading.
We get to Dr. Rosen’s office, this Doctor is younger than me (which is fine by me, the “younger” ones typically know the latest/greatest techniques). I like him, he’s smart, nice and has a good way about him. He explains options to me, what we can do and how things may or may not turn out. He further explains that at this advanced stage of polyposis in my colon, it is only a matter of time before cancer shows its ugly head. I ask him “When can we do this surgery?” He replies that we can do it August 10th, which is 3 days after my 35th birthday. I reply “Let’s do it”. I have 14 days or so to get my house in order, get as prepared as possible for this surgery. I’ve NEVER had major surgery or much surgery of any type outside of minor things.
Fast forward to August 9th, 2004 and here we go again with the “prep”. More fun PhosphoSoda, but, I tell myself it could be worse. I have a tough time sleeping, I smoke my last cigarette of the night (consequently haven’t had one since) and goto bed and lay down. We have to be at the hospital bright and early the next morning, something like 5am. We arrive. Nurses come and get me, take me to prep. We do all the prep, then Whitney comes in and we hang out for a little bit, then they tell us “It’s time” and wheel me towards the OR, I last see Whitney at “kissing corner” and tell her that I love her and I’ll see her on the other side. She’s being strong, but, I know she’s upset and scared/nervous and frightened. I, too, show her my strong face as that’s just me.
Next thing I remember I’m waking up in recovery in major pain. Then doze out of reality for quite some time. I wake up in a room in the hospital, in pain. My epidural had quite working and my pain medication delivery wasn’t working too well! I suffer some complications such as my heart racing to near/over 200 bpm, a fever of over 104 even nearing 105 all the while laying on a cool mat, I’m freezing yet burning up. There are days that I remember nothing at all. Then I start coming around, pain medications are working, complications are lessening. I’ve lost about 50 pounds. They do a chemical stress test to see what’s going on with my heart, I have multiple CT Scans to check for infection and many other things. Then a doctor walks in, says he is “so and so” (I can’t remember his name) and that he’s an Oncologist and wants to share some news with us. They had found cancer in multiple places in my colon and rectum upon the biopsy, I had stage 2 colon and rectal cancer. He laid out some options. We thanked him and told him we’d get back to him. My older sister, Anna, was called at that point. She was fighting breast cancer, I figured it was worth a call to her to ask her opinion on a good Oncologist, she told me to set an appointment with Dr. Yates @ Gaston Oncology and Hematology when I can and am up to it, that he would be a great resource if nothing else.
Fast forward a few weeks, I get out of the hospital. We set an appointment with Dr. Yates tell him the details of why I was there and who recommended me. He smiles and says “Ahhh you’re her little brother that she told me about”. So my reputation preceded me, we talked in depth about options and came to a conclusion that we were going to proceed with 5FU Regimena as there was no lymph node involvement. We would be watchful of signs internally that it might spread, but, he felt like that didn’t occur. Coincidentally it was at one of my very first appointments with Dr. Yates that I was introduced by my sister Anna to a nice lady, Susan Kelley, who it turns out became my Chemo-Buddy and a great friend. She, too, had been diagnosed with Colon Cancer.
My story doesn’t stop once I finish Chemo, defeating the cancer that was in my body at that time. You see with FAP/GS we must remain vigilant and be ever watchful for polyps that can and do show up darn near anywhere in our digestive tract. To that end, following surgery, I have upper endoscopies at a minimum of every 6 months, sometimes as long as a year to check the Duodenum and stomach for the invading polyps to watch for them and biopsy and check as much as possible for cancer.
In 2008, my wife and I move to the Jacksonville, Florida metro area. I have to set up with a new Gastroenterologist for my bi-annual upper endoscopy. The appointment is set up for October 31, 2008. We go in, the procedure goes well. Come home and I relax as usual, taking it easy. The next morning I wake up and feel badly, thinking that maybe it was just “the crud”, we let it go. All the while as the day progresses, I’m getting sicker and sicker. Sunday (2 days after the procedure) roll around, I’m not feeling any better. We call the GI’s office and ultimately goto the ER. I am admitted to the hospital immediately. Essentially it’s discovered that I now have an abdominal abscess. How it got there? Well, we can draw our own conclusions, but, that would be speculation. I remember rolling into the OR, thinking I wasn’t going to make it out alive. I just had a bad feeling. I was in the hospital the entire month of November 2008. During my lengthy visit at the hospital I did in fact have brushes with death and am truly lucky to be here. I lost 55 or so pounds. I was just a shell of myself, skin and bones. Truly.
I get home from the hospital, am told by my father that I need to call my brother in law Rick, he won’t say why but that I should call him. I do. He tells me that my sister’s cancer that was in remission has returned with a vengeance and there is nothing they can do. My sister Anna and I talk up and until the day that she can no longer speak. All the while she’s telling me how tough I must have it. My sister died of breast cancer January 1, 2009.
Continuing on with my usual FAP/GS surveillance, I have my routine upper endoscopies. I have now searched out and decided whatever it took, I was going to get care at Mayo Clinic here in Jacksonville. I call their GI Department, telling them of my scenario and that I’d like to come for a consult. A few days pass, ultimately I make an appointment with Dr. Riegert-Johnson at Mayo Clinic, meet with him and have a rather lengthy questionnaire for him. He begins and answers all my questions without my having to ask. I know this is THE GUY. He is the one I want surveying me, beyond the shadow of a doubt. Dr. Riegert-Johnson does my routine surveillance. We find tiny, tiny polyps and evidence of polyps in my Duodenum in 2009. Moving forward to December 2009, we do my routine scopes, Dr. Riegert-Johnson finds the polyps have and are really large and I have a very very large one partially obstructing the common bile duct in the duodenum. He thinks they might be able to be remove it via ERCP. We set up another procedure. No luck. As the one GI is going in to look, he calls Dr. Riegert-Johnson. It’s gotten way worse. It’s time for the Whipple Procedure. A very, very tough surgery that essentially remakes your digestive system from the stomach to the small bowel, though mine will be a very heavily modified Whipple as there is no need to remove any of the pancreas. The doctors tell me “It’s not a question of ‘if’ cancer’s coming, it’s when. You need this surgery in the short term, if you wait much longer, it’s a huge risk.”. I meet with Dr. Asbun, truly a guru by any standard in surgery. He explains to me what he intends to do, we discuss a lot and he realizes that I’m highly educated on the Whipple, I tell him that I need to get my head ready and be 100% committed before we do this. He understands.
On September 26th, 2011 I underwent a highly modified “Whipple Procedure” that in all actuality was a very modified Duodenectomy. Dr. Asbun saved my life twice. Once from performing the surgery and the other time from his “sixth sense”. You see, he was finishing up the surgery and had closed the laproscopic penetrations. He “sensed” something wasn’t right. They ran several tests on me and he had his team prep me for a full open surgery. The first time the test results came back all good. He had them run them again, no sooner than they got the results back, I crashed on the OR table. He opened me up, found I was bleeding out. No one is sure how that happened. I am very lucky that he had a “sense” and that I wasn’t in recovery already. If I was in recovery and he hadn’t done what he had, I’d be dead today. It was touch and go in the hospital afterwards as well. As of today, January 16, 2012 I am still recovering moderately from probably the biggest single surgery a human can have. We managed to beat cancer though. There were no cancer cells found, though the biopsies definitely showed it wasn’t far off. I still have a JP Drain in due to a fistula at the anastomosis site where they attached my pancreas/stomach and small bowel. I have not eaten or drank anything essentially since September 25th, 2011.
In an effort to “give back” I have always offered my experiences to my Doctors. In that I have offered to speak to patients who are newly diagnosed with FAP/GS or who might be facing the same or similar surgeries as I have underwent. Many of my Doctors have taken me up on that offer, because we (collectively) think it can be helpful to show what it’s like on the other side. I will always offer this to my Doctors or any of their colleagues, I truly believe that can help people who are just as scared as I was.
All in all, I had no clue when this whole wild ride with FAP/GS began way back that I would truly do battle with cancer at all, much less on more than one occasion, I am also certain that I may do battle again with cancer. That’s just the way it is with FAP/GS. I made up my mind a long, long time ago that no matter what I was going to fight, I was going to do my very best to maintain a positive outlook. I am a fighter, ultimately one day maybe cancer will take me; but cancer will never ever take my spirit or will to survive. I have been tested on what seems like a continual basis. Wondering sometimes “Why me?” Then I stop and think “Why NOT me”. This was given to me for a reason, I handle it somehow. All my doctors, family and friends always are amazed at my will, my spirit and my attitude. My reply has always been and will always be “I cannot control how my body reacts to anything, but, I can control how I react mentally and spiritually.” I have lost my older sister, two uncles and some very close friends and fraternity brothers to cancer. In as much as I miss them, I know they have moved onward to a new journey and chapter in our existence as humans. We must all do everything we can to defeat cancer. As I like to say CANCER SUCKS!
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