home... with a glimpse of the future

It seems, when one has cancer, there is actually something really positive about medical staff coming and going all day long, poking and prodding, checking and verifying this or that.

We both thought that having Tad comfortably back in his home would be the healthiest possible thing for him.

But sitting at home, with post-chemo fatigue and knowing in a couple weeks it will be back to chemo hell again, makes it hard to really engage in life fully.

It seems easier for me than for Tad. I can whip up a daily list of things to do in a heart beat. I can keep my nose on my list and fill my days so that by evening I feel a sense of accomplishment. Clearly right now that's tough for him. The usual pleasures of gardening, going to movies, shopping and doodling on the computer have lost their appeal. And seeing him like this feeds my own fears that somehow it will hasten his death.

Curiously this is the opposite of our dynamic at the hospital where I tend to be the one feeling glum, goal-less and prone to fear while he - in the thick of the action - seems to be more upbeat, even on the most hellish diarrhea/fever/shakes/chemo days.

He will be back in the hospital in about two weeks. This time it will be at UCSF where we have already met the new oncologist, Dr Thomas Martin.
He laid out the plan for the next stages of treatment:
- One month in the hospital for a second round of chemo starting mid-June,
- Most of July at home for rest,
- Most of August in the hospital again for a third round of chemo plus a bone marrow transfusion - which may have to be done in LA,
- Most of September at home.

He was cautious to offer us statistics, possibility of survival, etc but he did hold some hope. He was cordial, purposeful, and visibly quite popular.

In the waiting room, unlike at the previous more posh hospital, we were able to meet with other people with leukemia. Because UCSF is THE leukemia center in the Bay Area people come from all over to get care there. Next to us was a 23 year old guy from Modesto. His mom explained he'd just finished recuperating from a bone marrow transfusion. He looked great.

This new oncologist explained the "remission" we've been so excited about has basically just got us to about one third of our goal. His job is to take us the other two thirds of the trip. He also explained that the original genetic information we'd received about this particular form of leukemia was incomplete. Further studies have shown that in fact Tad's cancer falls in the most difficult to cure camp of the three types.

Needless to say - we came home from this first encounter with a new doc feeling both hopeful and yet quite beleaguered and weepy.

Tad asked that I spend more time with him in Santa Cruz where I am enjoying the warm days (81 compared to 67 in SF) and doting on the vegetable garden which various friends lovingly kept on track during the last round of chemo. Since I am focused on preparing for the boards i.e. studying - it's easy for me to do.

The good news is we have to time to prepare for the next rounds. If you are willing to help out by being on a team of people who take care of Tad's cat, garden and house (and sometimes his husband) during the hospital stints please let me know. We hope to get a group of folks organized in SC who can share the burden.