Saturday, July 28, 2012

Second Round - Chapter One - Finding Bartlett



Forty-nine years without cancer; eleven months now as a cancer patient - and I honestly do not recall what life was like before the diagnosis. To me now, it is as if I have always had cancer. I wonder if this is normal. And along the same idea, something I now consider very strange may have happened (between August, 2011 and May, 2012). I don't know how a person could become even mildly complacent about having late stage cancer but it seems as if I had become that way; I am not sure. Of course, the first few weeks, I was frightened to the core, but after being told so many things, by so many doctors, i.e. "you have a negligible chance of living five year", or "this is not curable, only manageable, and even that to a point", or " I give you 30 or 40 months"… what else can a life loving person do except begin to ignore the idea that you are going to die in their heart and their mind, and begin to live for each and every day? My desire to live to be an old man never went away, and there was also a very mild sadness inside me all of the time, but I genuinely became grateful for the life that I did have left whether it be today and tomorrow or "30 to 40 months" but despite the best efforts of all of my friends and family who constantly told me story's about "thus and so" who was given 2 months to live ten years ago, I am a realist and after having it beat into me by the doctors, I was fairly certain that the cancer would, one day, kill me, and probably in about the time they were saying.

I say that I had become complacent about the cancer because there came a point in time, didn't care - and I just wanted to live the best life I could, no matter how long that would be.

From that point forward (I guess about January), I refused to listen to any more spastics. I would no longer tolerate listening to "how much longer I had to live" and I informed all of my doctors of that desire. I mean, what was the point hearing it over and over again? The doctors who refused my requested, I walked out on. Others I fired. I well understood how much time they all thought I had left and I found it somewhat cruel to keep bringing it up.

I think you probably know the story- colon mass unexpectedly found late last August - surgery to remove; diagnosis: Stage 4. I went through chemotherapy treatments all winter. Massive lifestyle adjustments, acceptance. But when a May CT Scan showed that the cancer had returned, I knew it was just too darn soon. A subsequent visit to my UK Oncologist left me in a momentary relapse of self-pity and disbelief (uncertain). I remember leaving the examination room with my Son and my Mother continuing to converse with the oncologist - and I settled under a nice Ash Tree on campus for a fine private "think" and a serious "now what" brain storm session. As my Son and Mother continued to obtain information from Dr. Anthony, (while I happily avoided the discussion whilst under my Ash, it was disclosed to them that the cancer had most likely spread to the lining of my abdomen, or the Peritoneum. The CT Scan showed one spot there, and a few shadows on the top of my liver. From the peritoneum, the cancer could spread to any number of vital organs, but at that point, it appeared to Dr. Anthony that it was spreading as Peritoneal Cancer. And according to Dr. Anthony, peritoneal cancer had recently become somewhat treatable using a new technique call HIPEC that involved surgically removing all visible cancer, then flooding the abdominal cavity with heated chemotherapy drugs.

Imploring my Son (probably because he knew he was a relatively tech savvy youth) to find one of only a handful of programs in the United States that employed the relatively new. Dr. Anthony considered me a nearly perfect candidate for this procedure. He urged my Son to move fast, find the right doctor and get moving. And while I sat under the Ash Tree, Mom and Jonny were being told that the prognosis could be very good if treated immediately. I suppose, because of the way the cancer had spread, it was now more treatable than ever.

The three of us left UK with Mom and Jonny hopeful but with me slipping away from the comfortable attitudes I had formed regarding the illness. Having hoped for a report of remission all I could think about was the fact that the need for more grueling and painful fighting in my immediate future was in order, and true as stated, the cancer was not going away.


As requested, by Son diligently and thoroughly turned the Internet inside out and found about five programs in the US that specialized in the needed HIPEC procedure; One in North Carolina, Huston, Indianapolis, John Hopkins and the University of Pittsburgh Medical Center (UPMC). My Son's research clearly led him to suggest to me to go to a man named Dr. David Bartlett at UPMC - a pioneer in HIPEC. Forty-eight hours of intense, loving family discussion emphatically led us to choose UPMC - especially since my Ex-wife had a colleague who had gone through this program five years earlier not only at the same hospital but with the same doctor (and he was still alive).

Now there was only the obstacle of getting a referral and getting accepted as a patient of Dr. Bartlett. (No small task). Dr. Anthony, my UK Oncologist made the referral easy enough, however the HIPEC procedure is so rigorous and physically demanding, not many of the patients in need of the procedure could actually endure it. Given that I had had ten months for my heath and fitness to decay, I was unsure I would be accepted as a patient. As a result of Dr. Anthony's referral, Dr. Bartlett's nurse, a true spitfire of a woman, called and had an exhaustive list of the medical records see needed from my many caregivers over the previous nine months. I spent several days arranging for the transferee of these materials, so that Dr. Bartlett could make a determination regarding my candidacy in the HIPEC program at UPMC. By the end of the week, I had an appointment to see the doctor in Pittsburgh! I was pleased because it had only take about ten days after learning that the cancer had returned to actually having an appointment for a consultation with one of the world leaders in a treatment procedure that may cure the cancer. I was able to rest easy for a couple of days. And I did.

My appointment date was May 31, just a few days later, and plans needed to be made. A debate broke out instantly as to how I would get to Pittsburgh and who would go with me. I was lovingly pushed to make so decisions by my family, but I remained unmoved to make any decisions regarding travel plans just yet. Since the discovery of cancer in my body nine months earlier, my family had accepted my insistence of self-guidance, and they gave me he space I needed to make my travel arrangements. Do to some underlying mental health problems (depression), it had been some years since I had traveled at all, and I new God would lead me to the perfect arrangements.

Instead of traveling by way of mass transit, I felt better about handling the traveling myself with the help of a family member or a friend. And for some strange reason, I felt led to ask an old friend of mine, Kerry Fain to drive me to Pittsburgh. Kerry and I had been friends since high school, and we were both members of the local cycling club. I considered Kerry a good friend, but equally important, I felt that he and I were just about as compatible as anybody I could think of - am I am a very private person. Despite the seriousness of the journey, I could think of very few people I would want to share the journey with. So over the days, God led me to Kerry.

I figured when I asked him, it would take him aback…. An odd and very large request for sure and even though Kerry and I were good friends, I was sure he felt like we were that good of friends. But I asked and after seeking and obtaining the necessary clearances, his answer was Yes. So on the morning of May 30, Kerry and I aimed our ambitions northward and struck out on our journey to unknown outcomes (acceptance in the programs or not).

Kerry was a perfect travel companion just as I had known he would be and a great care giver as well. I was still fairly disabled due to the recent chemo, a bad case of neuropathy and a bad back injury. He drove the entire 850 miles totally without incident proving to me again, I was right in asking him to accompany me. We were to stay that evening at a "Family House", a place for UPMC patients and their caregivers. We arrived there early in the evening and we were pleased with the accommodations. It had the feel of a nice bed and breakfast; it was clean and pleasant and was within the University of Pittsburgh Campus, just a mile or so from the hospital. Shuttled came every half an hour to take patients to the hospital.

With enough time to get a nice meal- we struck out walking until we found a nice Italian restaurant. We sat on the patio and watched all of the pedestrians and cyclists come and go, and marveled at all of the high and beautiful architecture off in the shallow distance. After dinner, we walked deeper into campus, fascinated by all of the people and sights and sounds. I had traveled extensively during early times (as a geologist) but I had been nowhere in years. I enjoyed being so far from home, if just for an evening.

The next morning, we rose early, packed out things, and head over to the hospital for our meeting with Dr. Bartlett. Of course I was nervous because I didn't know what Bartlett's decision would be - accept me as a patient, or send me home for a long, chemotherapy riddled ending with the doctor I didn't like from my earlier chemo experience. I desperately wanted him to accept me.

Passing through multiple layers of registration (the facility was absolutely enormous), it didn't take us long to end up in an examination room with Bartlett. Stating that he had been over all of my records and that he felt I was strong and young enough to endure the rigors of the procedure, Dr. Bartlett accepted me as his patient and told me to be back in Pittsburgh on June 12 for the surgery. My scheduled time was 6:30 AM. I was so happy! Dr. Bartlett took a few moments to explain the procedure to us, and even though I sounded harrowing, he also claimed that, based on the recent scans, there didn't appear to be a lot of cancer - and that it would probably go smoothly.

Like little Larks, Kerry and I got back into the car and headed home- full of hope and anxiety.