Dear Family and Friends,

Fortunately, I still have nothing conclusive to report to you on John's condition. Beyond question, however, his rapid decline has ceased. As I phrased it to one friend, "John seems to have gotten over the idea of dying right away." He is still really sick much of the time, but not all of the time. More importantly, his symptoms follow no trend. We have all been cheered to see that in the past four weeks, he has had eight really good days. Wednesday, he took Lacy to the Zoo and went all day without a nap. A day and a half later, he was retching his guts out, and continues to do so. The chemo hits him harder than ever, and I think that he keeps catching the stomach flu. Still, with huge amounts of pain meds and anti-nausea medication, he participates in some family activities on the good days. He does not drive anymore, but if I drive, he can take the kids out. I'm not getting rid of the second car yet, recently that has seemed premature.

I have no way to conceive of or explain this change in John's energy level. It is too early to tell if the chemo is "working" again. John's tumor marker numbers still look dismal. His CA19-9 numbers (the ones that measure tumor activity for this type of cancer) were in the 300's in October and November, 1,900 in December and 4,700 in January. To give you some perspective on just how high a number 4,700 seems to us, remember that two-and-a-half years ago, when the surgeon doing the biopsy saw 50 tumors and predicted that John would live "months", John's tumor marker numbers were under 600. When John first got these numbers, they really scared him. I suppose that they did not scare me only because they confirmed everything I expected. I had already steeled myself up for the logical consequences of such numbers based on how John looked. He, on the other hand, was too sick to really notice himself. In any case, hearing the numbers seemed to really precipitate a change in John.

After a few days of freaking out, John relaxed completely. He maintained that relaxed attitude for two or three weeks. Some people who visited him reported that his great equanimity was catching, and they went home feeling wonderful after helping him. John's sense of well-being continued as his condition improved. For a while, he was truly amazing, because he had the great acceptance of a dying man in the body of a person who went out and did things. John's fabulousness made my own reaction all the more confusing. At first, I kept talking about how disoriented I felt. While obviously pleased to have John feeling better, I had gotten used to thinking he would decline. I laughed about how it almost appeared that I wanted to be right, or to know something more than I wanted to have my husband and my family in tact. But there was something more. I just could not access it. Finally, a body worker said, "I feel a great deal of guilt." We talked around the issue for a while, then a few days later I exploded (quietly to myself) with anger at John and guilt about the anger. As soon as I did, all three kids exploded (not quietly or to themselves). After almost two weeks of constant fits from Lacy (complete with kicking, screaming, hitting, throwing things, smashing things, and titty twisters) sometimes joined in by the other kids for a trio of angry chorus, we all felt much better (if a bit tired).

I'm not sure what we are in for next. John sleeps and throws up. The kids watch a lot of TV, and I, suspiciously, exaggeratedly, worry about money and my career. We all, have exhibited some cautious optimism, we are making plans for summer and the next school year. We don't really expect John to be in them, but for the longest time, we refused to make plans at all. (Maybe the money thing fits with this new getting-on-with-our-lives-regardless-of-circumstances attitude.) I have to admit that I'm starting to think that John will be around for the kids' Shakespeare performance in the middle of March. (I'm thrilled about that idea particularly because Lacy's performs for the first time this year and he's worked so hard to learn his few little lines! How cute it that!?) I have even begun to entertain the possibility that John will celebrate my 40th birthday with me at the end of April. The kids have started music lessons again, and I can imagine having the emotional energy to make them practice. There is a cautious optimism in our house that seems only partly related to projected outcomes. Maybe we are just getting better at living with uncertainty.

Thank you to those of you who have come to help John, to those who meant to and did not manage it, to those who wished they could but could not, and to those who knew that they could not but prayed, hoped, or included him in their practice. It all helps. To that one guy on the lower, East side who thought in passing, "Fuck John, who cares if he lives or dies." Fuck you back! To the lady in the cubicle who hates herself for her conflicted feelings about whether she wants John to live or die, I know how you feel, but I think you should get over it. (BTW I made these people up, so any identity you feel with them is purely your own creation.)

John needs much less help at the moment, so only those who really got something out of it should call Jeannette at this point. If you put yourself out to come, save the effort for the next round. It was a bit funny when we started to get our third round of last visits. I feel a bit like the boy who cried wolf. I see now, that the boy really did not mean to cause so much trouble. He just reported what he saw and had an overly developed flair for drama. Also, the villagers could have checked things out a bit for themselves before they let his cries trigger all their fears. On the other hand, I don't think it would have helped that much. It probably would have looked like a wolf to them also. At this point, I've begun to make friends with the wolf after reporting on him so many times. The whole notion him existing as a wolf at all has begun to break down somewhat. Still, he'll probably keep on looking like a wolf, and triggering my oh-no-a-wolf reaction, no matter how comfortable I become with him.

Love to all,
Martha

PS To get these emails directly or to get Jeannette's contact information go to www.innervisions.com