Dan,

I don't even know how to begin. This just sucks.

I am back from a trip to Scott's river cabin, where I spread his ashes at his favorite fly-fishing spot. I still have trouble believing that he is gone even though I held his hand and watched it happen.

Some have asked here why docs are assuming the worst without biopsies. Well, the same happened for my husband. We did ultimately get our biopsy, but the doctors had already given us the "there's nothing more we can do for you" speech. We sat stunned, then I silently cried and Scott rubbed my arm and squeezed my hand while the doctor told us about chemo that might give us a few extra days or weeks. The oncologist did NOT want us to bother with chemo since it might alter his quality of life; Scott, however, could not stand to do nothing but wait around to die, so he insisted on taking one of two options that would allow us to remain at home and not travel to the hospital. Our options were chemo pills--Xeloda or Iressa. We chose Xeloda. We were told there was only a 10-15% chance of it doing anything to slow the cancer. That was at least something. They gave Scott 2 months to live. We contacted Hospice even though we felt it was too soon to do so (it wasn't). He died 7 weeks later.

Did the Xeloda help? I think it did initially. Scott took two rounds of it: took it for 14 days, then off 7, then took it 14 days again, and then no more. We could actually see the progression of the cancer since it was metastatic to his skin (horror story there), and I am certain that it slowed during each round of the Xeloda, then accelerated each time he went off. So, did it buy us more time? Not from doctors' predictions, but I think it did buy us more time because that cancer was growing and spreading so fast that I don't think he could have made it one month had we done nothing.

Doctors kept reminding us about quality of life. I totally understand that. Scott's quality of life did change drastically, but from the cancer, not from the Xeloda. He had no side effects from it that we could tell (except slowing in growth of the cancer). He probably had more side-effects from the cancer and the pain med--morphine--like feeling exhausted, groggy, unable to concentrate, etc. During this time, we spent every minute together, did not insist on tests (no point) or visits to a doctor (when we needed him, our hospice doc came to our house!) We spent our days how we wanted, sometimes just sitting and holding hands; sometimes watching TV, sometimes napping, crying, or talking.

Dan, during this time that you must wait for your doctors' appointments, I know you will feel or are feeling a combination of numbness, intense loneliness, heart-ache, anger, helplessness....Scott and I went through all of that. Acceptance was the hardest. It nearly killed me to think of him having to accept that the end was near after he had fought so valiantly. He had been the poster child of positive attitude; even doctors had thought he had a good chance to beat the cancer because of his attitude and will to live!

Ultimately, though, he hung on to the things he loved to get him through--his family, friends, good literature, music, his kitties...The cliche "take one day at at time" became one hour, one minute, at at time. Whatever he could handle. You do the same. Allow yourself to feel however you need to to get through. Know that whatever you are feeling, there are those of us who truly do understand.

love,
Christine