It has been four weeks and innumerable lifetimes since I sent the first update on John's condition. I am inclined to apologize for taking so long to let you know what is going on with us, but I won't. I could not have done other than I did. They say that people faced with death often rapidly make changes that would take years under ordinary circumstances. Now I understand what that feels like. In the fairy tales, people wearing 7-league boots travel 21 miles with each step. This feels more like we wear 7-year boots, except in the moments when time stands completely still, or the ones where it ceases to exist. (I hope that clarifies things for you!) As the days passed, our picture of John's condition developed much like a cancer in its own right. In the early stages of tumor development, cancer looks much like the crab for which the Greeks named it. We saw photographs of these crab-like things growing on the outside of John's stomach and duodenum as if ready to scuttle across rocks. In the lower abdominal area they look more like balls of various sizes. (The appendix looked like a bag of golf balls.) This looked bad to us and the way the doctors looked at us made it clear that things were serious. Still, we did not know what the surgeon meant by "months". The oncologist confirmed that it was advanced Pancreatic Cancer of the type (adenocarcenoma). Still, he did not make a prognosis. Only as we began to read, did we understand what Pancreatic Cancer really means and that John is in the final stage. Slowly, the picture took shape. It grew like some grotesque monster. They have no cure for Pancreatic Cancer and only 1% of Americans at John's stage live to five years.

How does one choose a treatment protocol when dealing in the realm of miracles? One can not expect a miracle. We know about hubris. All we could do was stand as bravely as we could in the face of inevitability and then do everything we could to invite a miracle. Strangely enough, the longer we looked death in the face, tried to really get to know it, the less afraid we became. The more we befriended death, the more possible a miracle seemed. We had hope. We were elated. We loved every moment of life. At some point, we were not there by force of will. We simply were.

There is no proven treatment for Pancreatic Cancer at this stage. All the choices are experimental or completely unproven. John finally chose an aggressive combination of chemotherapy drugs that are proven to shrink adenocarcinoma tumors. They have no numbers on disease-free survival or survival to 5 years because the protocol is still in trials, but almost all of the participants have already died. Most were given a few more months (up to a year and a half) with the treatment over the 3-6 months of life for people who did nothing. John liked this protocol because it is aggressive, can be taken locally, and could be started right away. Also, although not proven to be very good if your goal is survival, it is the most proven of the choices. I found John's choice difficult because I would have gone for something less proven that had some survivals. Still, I see the wisdom in his choice on many levels. In addition to the chemotherapy, John is taking a number of supplements that have been successfully used with Pancreatic Cancer patients. He is also doing many of the things that come up time and again in the "survival literature". Unfortunately, even with 7-year boots, one can only change one's habits so fast. Often, he is simply too sick to care. Other times, the straws one could grasp at get in the way of living every moment to the fullest. For John, the living usually wins out.

For me, sometimes "living life to its fullest" is the most exhausting part. It is a surreal experience, to simultaneously enjoy a moment and to document it so that the small children will remember having fun with their father. Ceasing to take photographs would not help, of course, because it is simply a metaphor for how we live our lives. It is a fine line, between truly living a full life and living one that is crammed full of everything you meant to do when the finish line seemed more distant. In any case, we are all living based on John's whims and the unpredictable nature of his illness. Yesterday, John could not get out of bed and could barely gasp out a few words or down a small bit of soup. Today, he walked to breakfast before I was even up and wants to go to the beach. One must just stay flexible! Fortunately, we are not in this alone. The goodness of humanity around us never ceases to amaze me. I no longer worry about "what will become of us", and John no longer questions his value in people's lives. Your overwhelming response rarely literally overwhelms us. Most of the time, it sustains us. Thank you all for helping us to understand that no matter what happens, we will be OK. Please remember that John is not dead yet, so we must not mourn him prematurely. Of course, this situation carries its own sadness regardless of the outcome. It is very difficult to be in this place, but we still have John and that is cause to celebrate! Love to all.

Martha

PS I am no longer afraid of stories about cancer patients, in fact, I collect them so bring them on!