going home

I'm in my funky hotel room cum hospital housing near the university while the coffee drips. Undoubtedly my favorite time of day.

The sweetness is multiplied by the fact that I can hear my beloved Tad making repetitive little swooshy noises as he sleeps not far away.

It's so wonderful to have him out of the 14 x 14 sterilized room but knowing he has almost no immune system and two tubes coming out of his chest makes me a bit fearful of just about everything. The washcloth on the counter in the bathroom suddenly looks suspect, the dishes I lay on the table have become potential infectants.

We have two seats reserved on a flight back to SF in two days: Wednesday June 8. We will go down to Santa Cruz where he has decided he will make up his mind whether to pursue this one last treatment or whether to accept the leukemia has won.

I've been doing a lot of gardening while I at Tad's house over the last six months. I see the tenacity of living things. Just when you think you've rid yourself of all the quack grass, another one pops up and within a week they've spread back into your roses. Leukemia is not much different.

Two days ago I received a phone call that left me feeling incredibly serene. It was from Kind Doctor (as opposed to A-hole doctor who was our inpatient attending doc).

We hadn't really spoken since our arrival in Seattle. I asked this man --who had encouraged us to come up insisting he had solutions to offer us-- what to make of two VERY different prognoses. On the one hand he was saying there was hope of getting Tad into remission and yet Evil Doc couldn't seem to get us out of the hospital and into hospice fast enough. I assumed that new clinical evidence had emerged and suddenly made the picture less favorable, no doubt the recent bone marrow biopsy.

He began to talk to me about his philosophy of care. It felt like a line of shit so I tried to bring him back to Tad's biological markers: "Has something changed that you're not telling me about?"

He replied: "This has nothing to do with clinical markers. This is like asking me if blue is better than red. In one case you know the outcome. In the other we can't possibly know unless we try. It's how scientific progress is made. It's how something appears that wasn't there before. You've tried two treatments and they didn't work. But you haven't tried this treatment. It may work. If I were sure it wouldn't work I would tell you to go home and call hospice. But we simply don't know unless we try."

This brilliant gentleman who works with Nobel prize winners introduced himself by his first name and took 45 minutes out of his Saturday to chat with me.

"As you've been seeing it's actually hard to get into protocols. Researchers can't take any risks because the drug companies are afraid their meds won't get to market. So in essence we're almost discouraged from doing anything new - we just keep repeating the same old stuff."

Tomorrow our wonderful friends Mark and Cathie are coming to join us from Portland for the day. This morning we are heading to the SCCA outpatient clinic for the first time. One of the buses I take drives past it and my heart skips a beat each time - it is still that image from a Web site I discovered months ago back in Santa Cruz, our Emerald City.

In the next couple of weeks Tad will decide whether he wants to go through all of the administrative rigamarole to get back into that place or stay home and let the weeds slowly win out. For some reason this juncture feels immensely peaceful to both of us.

(Nota bene: Dr Estey AKA Good Doc is giving a talk at Stanford today and promised to speak to their chief hematologist about taking Tad on with the bold treatment. We will see what comes of that.)