Wednesday, June 23, 2010

How It Started

How did this all get started? Was it in early March when we giddily put you on Medicare? We were so happy that you were able to choose your doctors after having been locked into Kaiser and their 'standard of care' where you had been given basically a death sentence. Yet, somehow you'd been given a reprieve. After your tumor had been strangling your duodenum and you had gone through an intestinal duodenal bypass, your tumor somehow stopped growing. CT scans revealed a tumor that remained unchanged throughout the months following the bypass and initial rounds of chemo. But Kaiser was not in a position to use anything experimental on you. They participated in no clinical trials and dared not try anything new. When your 65th birthday month arrived, we were ready to move. On the first day of the month a person turns 65, that person is on Medicare. You had done your research, your legwork. You had been in contact with PCAN (Pancreatic Cancer Action Network), you had a PAL there, and she had sent you all kinds of information on who was doing what in the world of pancreatic cancer. You had chosen your doctors carefully. And best of all, you had found an oncological surgeon who would do the surgery that all of the doctors at Kaiser had said could not ever, I mean not ever, be done. I was proud of the way you had advocated for yourself. I used to always think that if you, Bill, didn't want to hear 'no' for answer, you didn't. This was a perfect example of that. Kaiser doctors had said 'no, you'll never find anyone who would dare operate on your tumor, and if you did, he would probably be some kind of charlatan.

Our first meeting was with the surgeon. He ordered another, more sophisticated CT scan, and then told you that he could do the surgery if the tumor shrank to half its current size. Next we went to the oncologist who would put you on a chemo regimen called FULFOX. He had had some success with it and he was very optimistic about your prospects for tumor shrinkage. We met with him and his physician's assistant. You gave them your medical history and listed the current meds you take. You have several conditions: diabetes, heart disease and a triple bypass, and manic depressive illness. Your diabetes is relatively new, and I have often wondered if it wasn't an early sign of the pancreatic cancer. But your older sister, your only sibling, also has diabetes, so when you were diagnosed with it, we didn't give it much thought.

Once you started FULFOX, you were glad. The side effects were much milder than the ones with the Tarceva and Gemsar you had been getting at Kaiser. You went for two hours in a chair every other week, and then you wore a chemo fanny pack for two days following your chair visits. You had diarrhea but that has been a constant since your intestinal bypass eight months ago. For those days when you wore the pack, you were tired. You took naps and spent a lot of time in the horizontal position. That was okay. You hadn't worked in years and I had three more years before I was going to retire. Anyway, I love my job. For the past twenty six years I have basically jumped out of bed with a big smile on my face and headed off to work. There have been a few exceptions, but not many. But maybe that was one of those things I didn't analyze well enough. Maybe that was one of those 'problems' I didn't attend to as I should have.

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