Hi all,

I realized something this week, something that has thrown my whole world into question once again. I realized that John could still die of Pancreatic Cancer. It may not seem like much of a revelation to you. "Duh, Martha," you may say, but my vision had become so myopic from inside my own head, it seemed an earth-shattering thought. Also, the way that the realization came to me really did shatter my world.

John has responded remarkably well to his treatment. He has had test results that we did not dare dream of six months ago. The P.E.T. scan showed no measurable cancer activity! Another blood test revealed CA19-9 numbers down to 26. The oncologist used the words "complete remission". He did so reluctantly, tentatively, with plenty of caveats, but he used them. These words were reasonable and encouraging, however, they also sowed the seeds of my undoing. Subtly and imperceptibly, my assumptions changed from thinking that John could get better to the idea that he would get better. I started to think about our lives in ordinary and mundane terms. I began to plan for the future. I began to expect John's participation in that future. "Maybe he could work a little more in September", became an expectation that he would work. In every aspect of our lives, this "maybe he could" became "he will", even "he should". Other people experienced similar thought patterns. I started to hear around town that John was cured. I guess none of us really understood the tentative nature of the word "remission".

Remission: This term is heard very frequently. It refers to the response of a cancer to the treatment. It does not mean that a cancer is cured. ... Cure means complete freedom from the cancer. To render someone cured of cancer, one has to wait and see if the cancer will ever come back. So, time is the crucial factor. If a patient remains in remission for a few years, the cancer might be cured. Certain cancers can reoccur after many years of remission.

- M. Hossein Tirgan, M.D. from his website Tirgan.com

Of course, I knew this. I just wanted so much for our lives to go back to "normal". I wanted freedom from fear and doubt without really working for it. Give me a comfortable fantasy strong enough to keep me safe! That is all I ask. It took months of sustained effort to fully accept that John would die of this disease or be sick for years. On the other hand, my pre-diagnosis view of him knew the floor-plan of my mind so well that it snuck in a back door while I slept. No amount of conscious knowledge about John's actual condition kept me from assuming that he would be well - was already well. I began to treat his recovery in the past tense. "Why did you live? What are you here to do?" I asked him the day the oncologist used the words "complete remission". I was ready to be done. I was so ready, that the oncologists' recommendations made no sense to me. I thought that, mired in their traditional assumptions, they just could not see the miracle. In truth, I missed the miracle. I wanted so badly for John to be well again, that I lost sight of the great gift in his positive response to therapy. It is very, very rare to do so well. These results lengthen John's prognosis markedly. I so hoped for the parting of the Red Sea, that I missed the miracle of a rainbow. I lost everything in an "all or nothing" mind set. The miracle, instead, felt like a loss. Why were they all still saying that John should take chemo? What does remission mean if he still has to take chemo? What's the point?

John's Oncologist had never seen such a marked response in Pancreatic Cancer. Because John's case is so rare, his oncologist consulted specialists all over the State. The oncologists who had seen a Pancreatic Cancer remission, to a person, recommended that John stay on chemotherapy. The oncologists with the most experience with Pancreatic Cancer recommended the longest chemotherapy regimes. The specialist at UCSF recommended that he take it every two weeks for the rest of his life. The specialist at UCLA pushed for two more years of chemo every week. Several of the local oncologists suggested that John be given a "chemo holiday" until the cancer comes back. They all expect the cancer to come back, and that the chemotherapy that had helped kill it off was necessary to keep it at bay. John finally chose to take chemotherapy once every two weeks, and to decide in April, after the results of the next staging, what to do next. I hate this. I hate chemotherapy. What kind of life is it really? On the other hand, it is life, and we must take what we can get.

How do I know, you may ask, that I and not the oncologists was the greater fool? Maybe my fantasy will prove more true than my current, more sober view. None of us will know for certain as long as John lives, which may be a long, long time. Furthermore, the question of the extent of John's cancer may not be the point at all. Perhaps, some cosmic calculation to force my acceptance of middle ground explains this struggle inside me. Maybe, I just needed a reminder to appreciate miracles where they appear, rather than trying to make things the way I want them. However, I have accepted the error as mine for several reasons. First, John's view of himself and his condition more closely matched the oncologists' than it did mine. Of all people, John should know the truth inside his own body. Second, I was falling into old expectations of him that have little or nothing to do with who he is. In some cases, these expectations don't even represent anyone he has ever been. I was trying to create a life for him that made sense to me, one that would make his problems stop annoying me. Although the oncologists likely cling to their views of what's possible. They had less invested in John's outcome than I did, less motivation to fool themselves. Therefore, I reason that I am the more likely fool. Finally, I had an experience that I found most convincing yet extremely difficult to explain. I had a vision that told me in no uncertain terms that I was missing something. I saw John's death stalking him. I had seen such a thing before, and that person died shortly thereafter. Understandably, the sight of it in John scared me. In truth, the "sight" didn't exactly scare me, because it was little more than a momentary flicker, a shadow moving behind his eyes. It was more the thought that accompanied what I saw, and the way that the sight and the thought came together that scared me. "John is not out of danger," I thought, as the shadow flickered past, "This chemo is killing him, but without it the cancer will come back."

Anyone in the Pancreatic Cancer community would give a great deal to sit with us between this rock and hard place. I feel like a heel to complain about it at all. Nonetheless, it resembles very little what I hoped for in my life. It feels so long and drawn out, so messy, so uncertain. I have made a career of solving problems, big and small. I have very little experience accepting murkiness. I know that real life always changes and one would be foolish to try to control it. Nonetheless, my world felt so safe when I believed that I could do so. Absolutes are just so clean.