Hello everyone,

I have just discovered two unfinished updates to all of you in my unsent e-mail drafts folder. I have not gotten a stretch of uninterrupted time long enough to complete a letter. Something always comes up. (For example, as I write I have stopped when Lacy got poop on his ride-on car and Grace got nail polish remover all over her arms - just normal kids' stuff but it adds up.) Sometimes, it would not matter how much time I have to write, I still could not communicate anything to anyone. I often work so hard understanding what is happening to John and all of us, that words do not come together in coherent strings. Blurry lives do not make good copy. Finally, I deal with privacy questions. How does one tell the truth without exposing the horrific reality of one's weaknesses? Many people have asked me to really tell the truth (all of it) because they think I might be able to do so without fear. They believe that such a frank discussion of life-and-death questions would be beneficial to many in a society that provides so little training in social-emotional issues. I see how such an endeavor could serve a worthwhile purpose, but I fear the sordid emotional circus of the daytime talk show (a la Riki Lake and company). That sort of fare often appears in the chemotherapy infusion room, prompting John to whimper for help. Imagine tubes pumping toxic chemicals into your veins while "the tube" pumps toxic social interactions into your brain! The Russian expletive, Kashmar! (nightmare) says it all. So, I will try to "tell all" tastefully and in good order before our household explodes again.

The two unfinished updates follow. Together, they give you a pretty good factual summary of John's situation over the past couple of months. I will try to review where that situation leaves us emotionally at the end, but vow to send this note regardless of its condition when I must stop.

9/13/03

Dear All, John did not end up having tetanus. They kept him that weekend and gave him IV fluids and anti-biotics. It was clear by the end of the weekend that he was responding too well to have had tetanus. A visit to an oral surgeon for specialized x-rays showed that he had an infection of his salivary gland. The surgeon said that it was probably due to dehydration. I talked to a cancer survivor recently who said that it is pretty common among people taking chemotherapy. (John wonders why nobody connected with giving him chemotherapy said anything about it.) I am still pleased that the General Practitioner kept him in the hospital over the weekend. First of all, it could have been tetanus and so it is better not to take the risk. Also, John was so severely dehydrated that a weekend on intravenous fluids as well as the anti-biotics really helped him recover fully.

Once John recovered from the infection, he took another round of chemotherapy. The local oncologist changed the regime. John was getting bad side effects from the combination therapy - Gemzar and Oxiliplatin or GEMOX (aren't they clever with their gimmicky names?). The worst effect of the Oxiliplatin was neuropathy - numbness and tingling in his extremities. He could not walk across a cold floor in the morning, take a can out of the refrigerator, or drink something with ice. He also experienced severe exhaustion, nausea and diarrhea. The oncologists (both the local one and the one at Cedar Sinai) said that given that the chemotherapy is not a cure (it will at best reverse the tumor growth somewhat) it does not make sense to take chemotherapy that drastically reduces the quality of life. Therefore, John has switched to taking Gemzar alone, though at a higher dose than before. He took this dose one time, and tolerated it quite well. He felt hardly any side effects. He did have a day of nausea and diarrhea, but given that several of us in the house had the stomach flu we can't say that it was the chemotherapy at all.

John has been feeling really well these last few days. He built a tool bench for the kids, went for many walks, and

10/15/03

Hi All,

It seems that once again John has the most pronounced of luck. Last time, he was the rare one ("like being struck by lightning" the Oncologist in San Francisco said) who gets the rare cancer too young to even make the statistics. This time, he is the one who improved markedly from the chemotherapy. Bottom line, they have changed his prognosis!

We have just returned from a trip to San Francisco, where we met with one of the foremost experts in Pancreatic Cancer in the country. In addition, she is currently the President of the American Clinical Oncology Association. In other words, her colleagues respect her. When John's local Oncologist speaks of her, there is a hint of awe in his voice (and this is a man with an M.D. and Ph. D. from Colombia and Residencies at UCLA and MD Anderson!). This specialist at UC San Francisco reviewed John's case, and said some very encouraging things. First, John's condition does not follow the pattern usually followed by those with hereditary Pancreatic Cancer (thank God for the kids' sakes). Second, the chemotherapy is clearly working (even I could tell that from the numbers we sent you before). However, she added that John's is a "better than average response rate," and that they are getting about two years out of a successful chemotherapy before the tumors stop responding to it. Finally, she said that it is a very dynamic field and a lot will change in two years.

I asked if she was suggesting that John's situation was like Aids and as long as John takes nasty chemicals he will be able to live with this as a chronic condition. She responded that while that is their goal, they can not claim the kind of success that the Aids researchers can. He should experience some relief for a while with the chemotherapy, and then after a couple of years it will likely stop working. At that point, they will see if there is another chemotherapy that will work.

11/6/03 (continued)

The second piece of information, John's change in prognosis, should really be stretched across a banner on Ojai Avenue rather than buried in the body of an e-mail surrounded by emotional content and day-to-day minutiae. This particular presentation, however, most closely mirrors the way we experienced the information ourselves. We had a very intense, and seemingly strange set of reactions, and meanwhile, the kids still had their needs; the bills still had to get paid; life went on. Isn't that the whole point after all?

When John and I left Dr. Tempero's office, we could have floated home. Instead we walked. As we walked we talked. I'm not trying to create a level 2 phonics reader here. I am trying to emphasize that we walked and talked across the entire width of the San Francisco peninsula, because our guts were beginning to spill out and we needed to keep ahead of them. My second reaction to the news, as the euphoria settled, was, "I can't go on like this for two years or longer." As John and I unpacked that thought (John's was something similar), we realized that we had operated in crisis mode for the previous three months. In crisis mode, nothing mattered much except being together and really living life. I happily worked myself to the bone, cared nothing for life beyond the moment, and forgave all slights immediately. All but the most saintly among us will immediately see how unsustainable such a lifestyle would be for more than a few months. So, the corollary to "I can't sustain this lifestyle" became, "If you are going to live, you will have to pick up your own socks."

This statement, in all of its brazen glory, of course represents everything about the sea change that would need to take place in our lives. These changes felt on the magnitude of continental drift. Everyone expects the dramatic effects of plate tectonics after a person receives a cancer diagnosis such as John's. An earthquake here, a new mountain range there, maybe a volcano or two, these are all understandable as we adjust to the reality of our own and our loved ones' mortality. Nobody prepared me, however, nor did they seem prepared themselves, for the effects of shifting to a longer prognosis. I felt like there was something wrong with us that we spent so little time celebrating the gift of life. In fact, we had celebrated the moments of our lives with John much more when we expected him to be snatched from us in a few months' time.

Many of the questions were simply practical. If this is going to go on for years, how much help can we reasonably ask for? How much can John do for himself? How well will he feel, and how often will he feel well? How can we change our lives into ones that will live with cancer rather than die with it? And, then what happens when we go back to dying with it after years of depleting our resources of all kinds?

There were other intellectual factors at play here also, though. We realized early on that we can't react every time a doctor says he will live or die. When we do, our lives become like a very steep sin curve where the amplitude is very high and the period very short (I think that makes it steep). We had already decided not to allow the doctors or the survival rates on the internet to dictate John's life span. We saw that to a large extent, we could simply choose a world view, and literally live by it. By so doing, we shut out the possibility of being truly freed by such news. On the other hand, we could not be shackled by news to the contrary either. In addition, we had known all along that modern oncology offered a couple of years on chemotherapy to those who responded favorably. I remember wondering, when I first discovered that information, why I was supposed to be thrilled. Now, of course, I understand wanting to take whatever we can get. Still, a part of me wants to hold out for a real cure, one that would restore him to health.

These considerations aside, the fact remained, pure and simple, that we had trouble accepting the picture of John living with cancer for several more years and did not entirely know why. Once we had agreed that John would pick up his own socks, go to chemotherapy by himself sometimes, and take responsibility for his own depression, we moved on to our next set of concerns. John had what could only be described as a career crisis. Why, you might ask, would a person on life-long disability have a career crisis? I certainly asked that question. Many new retirees go through the same thing, because people need a purpose in life. If John were if fact to live, he would have to have one. The idea of dying, you see, can be very convenient. Some questions can simply go unanswered without having to put any mental discipline into letting them go. We have watched John's brother and many of his friends with AIDS go through a similar process. I realized one day, as I listened to "Billy" play the new piano pieces he had learned (after not touching the piano in years after diagnosis), and reading his new resume (after not working in years) that this is what happens to people who forget to die. The new wonder drugs have created a whole culture of people with a new lease on life. John became part of that culture.

As we all got used to this new standard, we found that we began to fight like crazy. The fighting went on for weeks and weeks. Every imaginable combination of people in the house fought individually and in groups. When you consider that on weekends when my brother is here we are a household of 8, that adds up to a lot of arguments. I believe that we all finally exhaled, allowed ourselves to relax back into normal life. In fact, in the days after the new prognosis, my mom, John and I all felt quite exhausted, having finally allowed ourselves to let go and feel tired. Finally, after almost a month of this, we seem to be calming down. I hope so, because I don't know how much more I could have taken. Our counselor told me that a person coming out of depression can expect to cry and scream a lot, so I can see this behavior as a positive sign. Although, this sort of news does not really make it easier to be yelled at by several people every day, at least I can see it as progress.

The final struggle for both of us is the most difficult to discuss (or even admit). I touched on it briefly when I mentioned that planning to die can get one out of some difficult questions. John's career crisis was one, and he had others about relationship, family, etc. I found that I had used the idea also. This crisis has changed all of us, and I could no longer live in relationship patterns that had served me well for many years. It was expedient to think that as I grew, I would not need to carry the old relationship with me. There really was a part of me that wanted to be rid of him! I realize now, after getting over the horror of having thought such a thing, that I was really wanting to be rid of an old way of being with him. Now that I have some perspective on that thought, I see that it does not differ in kind (though perhaps in degree) from a married person contemplating divorce (and I'll wager that all do occasionally). With that understanding, I have regained the joy of being with him, and happily set about the task of the new me living with the new him for as long as that possibility affords itself.

John's bad days still outnumber his good days much of the time, but more often we are getting an even split. Some of the good days are better than ever. We are still figuring things out as we go along. I had a scare the other day when John ended up in bed barely able to move days after the effects of chemo should have worn off. He was on the phone with the oncology nurse trying to figure out what was wrong with him. We realized that he had not eaten in 24 hours. I made him a smoothie and he perked up. I gave him some soup, and he became hungry. Then, he ate part of a sandwich. He finds that he has no desire to eat, and can barely make himself do it. Most Pancreatic Cancer patients die of "wasting" (the technical term), so this is serious business. Today, though he has been up most of the day doing things, and making plans for his week off of chemo. We have now gotten used to the idea of measuring John's life in years rather than months, while the rest of us his age still measure ours in decades. I am happy to plan his 40th birthday party (January, 2005) without fear, and hold out hope for a 45th! I had difficulty when my brother asked us all to visualize our family in six years, as I had conditioned myself against projecting into the future, but in the end I could do it. What a blessing to consider that John could still be with us, but also to have accepted his illness so fully that I know he will always be with us no matter what happens. In other words, we are for the most part detached from every outcome, yet feel the ramifications of every possibility very intensely. I know that on the surface that makes no sense, but you'll just have to live with it. We do.