Dear Friends and Family,

I think that I finally have a coherent story to tell you about John's situation. Last month's tumor marker numbers showed a marked decrease, indicating that his tumors were definitely shrinking. Unfortunately, the day we got that news we also decided, together with the Oncologist, that John could no longer take the chemo that had produced these results. His neurotoxicity levels were just too high. While his tumors decreased, he continued to need more and more pain meds. John now takes a combination of a very low dose of the baseline chemo with an experimental drug called Tarceva. This drug inhibits cell epidural growth. The process sounds to me something like what happens to bird egg shells when we burn plastic - the outer lining getting too soft to maintain its integrity. In any case, new cells don't form as effectively, so, as with other cancer treatments it relies on the fact that cancer cells grow particularly fast (and Adinocarcinoma's one of the fastest). Once again, John has responded to the treatment! This means that tumor activity has stabilized. While the current plan does nothing to shrink tumors, it gives John's body a chance to rest from treatment. This stabilization at very high tumor levels means a significantly compromised quality of life, but with proper pain management and expectation management, John is able to do things of value to him.

Both types of management have presented us with major challenges. John has tried several pain meds and different modes of delivery until we finally came up with a plan that works fairly well for him. He wears Fentynal patches 200mcg/hr and takes liquid Morphine for breakthrough pain. John needs to change the patches more frequently than the manufacturer's recommendation or he goes into withdrawals. It took us weeks to realize that the symptoms were withdrawals and weeks more to learn that this problem happens with some regularity. For the longest time, we could not tell if these symptoms were from the tumors, from the treatments, or from the pain meds. All we knew was that changing the patches helped. Our own expectations for John's health complicated the picture. Every time John felt well, he wanted to do something wonderful enough to balance out the horrible time spent in bed. For several weeks, he cycled between these grand exertions and periods of bedrest and vomiting. He did some pretty impressive things during that phase, like go backpacking into the Sespe. (The friend who took him and dealt with hiking and vomit ought to get a medal.) Anyway, that got pretty old after a while, so now we find things to do together that don't take so much out of him. I have found that the kindest thing I can do for John is ask favors of him, preferably ones that don't make him vomit.

The kids and I have recovered from our post-traumatic stress reactions and no longer rage at one-another. We have continued the process that we started last winter, of taking back our lives. I think that after almost three years, we finally grew tired of, and somehow less impressed with, being in crisis all the time. I do my work, I go to meetings, I go to kid activities, all as if my life is just life (which it is, really). I miss some things about being in shock, though. I was never so easy-going before or since. Still, I have the memory of having taken life as it came, and can call up that experience when I want to alter my external circumstances to improve my inner life. Also, some things have shifted permanently in me. It is kind of interesting to watch myself go back to my old life and my old behaviors and see what I take back and what I don't. My mom has described a similar process in herself. We thought we had grown out of certain things only to find them coming back, but then not completely back either. I see some of this in William also. He has started having hopes, dreams and goals again. Grace has taken up the activities that she had quit, which I see as another version of the same process. Lacy is just too young for me to tell, but he has entered a pretty relaxed phase as well. (I'm just so grateful that he has stopped trying to rip my breasts off that I would be happy even if he had not become so easy and charming.) I don't claim that I suddenly find my life easy. I have a lot to balance and the money situation has entered another really difficult phase, but things seem workable somehow. It is just another example of how my problems come mostly from how I take them.

Love,
Martha