The START of TREATMENT
Better to be “trouble” than to be dead.
Back in Iowa City, I entered a small hospital where I was diagnosed with one of the worst cancers - pancreatic. That was a tough day – a very tough day. I felt as if I had been handed a death sentence. It was a day of sorrow and loss, but the next day, I was ready to move on, hope for the best, fight and aim to survive. This was not some kind of heroic response, but simply there was no other choice if I wanted to give myself the best chance for survivorship. Looking back it seems strange that I had such short lived emotion about the diagnosis, but as I said, there was no choice. My plan was and is to survive and to live as normal a life as possible. And by normal, I mean normal for me which includes amongst other things riding my bicycle across the country again.
The small hospital was unable to deal with my situation so I was transferred to oncology surgery at the University Hospital (UIHC) where “maybe” a particular surgeon would undertake my case. He saw something in the scans and tests that perhaps others missed and, living up to his reputation of willingness to take on complicated surgeries, he did just that. A 50ish man with a good bedside manner, he radiated confidence and decisiveness - good characteristics for a “cutter”. The tumor was very large and surrounded critical blood vessels. I was bleeding internally and blood transfusion only temporarily raised my extremely low red blood count. The surgery took 9 hours and left an 11 inch scar. Later, I learned most surgeons would not have even undertaken my surgery (called the Wipple Procedure in which the infected part of the pancreas is cut out and your stomach replumbed using a stent) because of the complexity of the surgery and “expected” poor prognosis. Very probably that surgeon saved my life. I had wonderful family support. My parents and brothers came daily and my brother Steve spent countless hours at the hospital. A big hospital moment came one evening when I had my “first fart”. Because of the stomach replumbing you are not allowed to eat until you do that. This happy event came six days after the surgery. As a bonus Steve was there to share the excitement and progress. I promptly called the nurse’s station and family members and the next day I returned to eating. It was weak gruel, but it was a step. Another hospital step came when I asked to have an exercise bicycle and an encouraging nurse hunted up an old forgotten one in the back of a closet somewhere. I have ridden tens and tens of thousand of miles and use a bicycle for local errands, for relaxing longer rides and as a bicycle tourist. I have ridden in the Australian Outback and across the United States. Bicycling was a natural and comfortable way for me to start building back up.
I left the hospital depleted, 40 pounds below my normal weight and with a poor prognosis. It was a blessing that I had family to go to. The first few days, I could not have realistically taken care of myself, let alone the good care that I needed. My first goal was to regain weight and strength and forced myself to eat a little more than I felt like. It was going to take awhile. The first weekend out of the hospital, a brother brought an old bike for me to use (mine was in California) and as we took a very short neighborhood ride I felt euphoric rejuvenation. More rejuvenation came with reading a couple books, one by John Grisham and the other by Michael Crichton. Nothing special about them, they were simply easy reads, page turners that held my attention. Somehow it brought a return of being able to focus and “normalcy”.
The next medical step was being assigned an oncologist. Here I was not so lucky and after seeing Oncologist A three times, I asked to change oncologists and with the help of the surgeon this was easily done. Why did I think it was necessary to change oncologists? At our first meeting, when I stated my intent to ride my bicycle across the country again, he had a fit. When I said I wanted to be treated aggressively and go for life, he whined (and I do mean whined) that people like me complained when the outcome was not good. This would not have been true, but to the point, I thought you pathetic (censored) – here I was fighting for my life and he was worried that I would complain about any bad outcome. I felt this melancholy-looking man was most interested in smoothing a way to death for me rather than fighting for my health and survival. I don’t question his medical knowledge, but if I had the kind of attitude he wanted me to have, I would be long gone.
Sometime after that, I had my chart and read what he had to say - very interesting. He labeled me “trouble”. Well, better trouble than dead.
Better to be “trouble” than to be dead.
Back in Iowa City, I entered a small hospital where I was diagnosed with one of the worst cancers - pancreatic. That was a tough day – a very tough day. I felt as if I had been handed a death sentence. It was a day of sorrow and loss, but the next day, I was ready to move on, hope for the best, fight and aim to survive. This was not some kind of heroic response, but simply there was no other choice if I wanted to give myself the best chance for survivorship. Looking back it seems strange that I had such short lived emotion about the diagnosis, but as I said, there was no choice. My plan was and is to survive and to live as normal a life as possible. And by normal, I mean normal for me which includes amongst other things riding my bicycle across the country again.
The small hospital was unable to deal with my situation so I was transferred to oncology surgery at the University Hospital (UIHC) where “maybe” a particular surgeon would undertake my case. He saw something in the scans and tests that perhaps others missed and, living up to his reputation of willingness to take on complicated surgeries, he did just that. A 50ish man with a good bedside manner, he radiated confidence and decisiveness - good characteristics for a “cutter”. The tumor was very large and surrounded critical blood vessels. I was bleeding internally and blood transfusion only temporarily raised my extremely low red blood count. The surgery took 9 hours and left an 11 inch scar. Later, I learned most surgeons would not have even undertaken my surgery (called the Wipple Procedure in which the infected part of the pancreas is cut out and your stomach replumbed using a stent) because of the complexity of the surgery and “expected” poor prognosis. Very probably that surgeon saved my life. I had wonderful family support. My parents and brothers came daily and my brother Steve spent countless hours at the hospital. A big hospital moment came one evening when I had my “first fart”. Because of the stomach replumbing you are not allowed to eat until you do that. This happy event came six days after the surgery. As a bonus Steve was there to share the excitement and progress. I promptly called the nurse’s station and family members and the next day I returned to eating. It was weak gruel, but it was a step. Another hospital step came when I asked to have an exercise bicycle and an encouraging nurse hunted up an old forgotten one in the back of a closet somewhere. I have ridden tens and tens of thousand of miles and use a bicycle for local errands, for relaxing longer rides and as a bicycle tourist. I have ridden in the Australian Outback and across the United States. Bicycling was a natural and comfortable way for me to start building back up.
I left the hospital depleted, 40 pounds below my normal weight and with a poor prognosis. It was a blessing that I had family to go to. The first few days, I could not have realistically taken care of myself, let alone the good care that I needed. My first goal was to regain weight and strength and forced myself to eat a little more than I felt like. It was going to take awhile. The first weekend out of the hospital, a brother brought an old bike for me to use (mine was in California) and as we took a very short neighborhood ride I felt euphoric rejuvenation. More rejuvenation came with reading a couple books, one by John Grisham and the other by Michael Crichton. Nothing special about them, they were simply easy reads, page turners that held my attention. Somehow it brought a return of being able to focus and “normalcy”.
The next medical step was being assigned an oncologist. Here I was not so lucky and after seeing Oncologist A three times, I asked to change oncologists and with the help of the surgeon this was easily done. Why did I think it was necessary to change oncologists? At our first meeting, when I stated my intent to ride my bicycle across the country again, he had a fit. When I said I wanted to be treated aggressively and go for life, he whined (and I do mean whined) that people like me complained when the outcome was not good. This would not have been true, but to the point, I thought you pathetic (censored) – here I was fighting for my life and he was worried that I would complain about any bad outcome. I felt this melancholy-looking man was most interested in smoothing a way to death for me rather than fighting for my health and survival. I don’t question his medical knowledge, but if I had the kind of attitude he wanted me to have, I would be long gone.
Sometime after that, I had my chart and read what he had to say - very interesting. He labeled me “trouble”. Well, better trouble than dead.
posted by Jerry A. at 11:45 AM
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