Inside the Silver Lining, a Dark Cloud

On the outside, encouraging news. My skin rash was nearly totally under control, my muscle contractures were gone, and I was gaining weight. In other words, I was getting over the GVHD.

Inside that silver lining was a dark cloud. My 180-day biopsy preliminary results show that the leukemia has returned. (The other results that take longer won't change this conclusion. They will just provide additional information about the extent of the return.) This was not a surprise, given the recent downward trend in blood counts, but I didn't have to face it and cry about it until yesterday, because it wasn't confirmed.

The two events — GVHD goes away, leukemia comes back— are, I assume, linked. Given a choice, I'll take the GVHD, thank you.

Jan and I are going up to Chicago Monday to talk about next steps: maybe trying to trigger graft-vs-leukemia; maybe another transplant, perhaps with a different donor; maybe something else we haven't heard of previously.

After the first transplant, I was thinking "cured!"

After the second transplant and the clean report card at 100 days, I was of course hoping for long-term remission but mentally prepared to fight again in a few years, perhaps when treatments were more effective and less dangerous. Instead, we're back at it six months since I left the hospital and four months since I was able to come home.

These recent months of nearly normal life have brought me a lot of simple joy, and I am grateful for that. It's painful to think about merely going back into the hospital, let alone the other darker possibilities.

I was trying not to think of the elephant in the room, without success. But even if you manage to avoid thinking about the elephant in the room, it can still crush you.

Trying Not to Think of the Elephant in the Room

I had several tests on Monday: pulmonary function, blood counts, and a bone marrow biopsy.

My pulmonary function test results are very good. Volume, diffusion... all indicate that my lungs are doing well and that my blood is taking up oxygen as it should.

My blood counts are not so positive. My platelets continue their steady decline, and for the first time in months my white counts have also slipped below normal. The hemoglobin counts are fine, which is consistent with my pulmonary function results. The neutrophil count is good, providing decent infection protection. The low platelet numbers are not a surprise, since my legs are covered with tiny red dots and larger red spots, both signs that capillaries just below the surface of the skin are leaking.

Why are the counts dropping? We don't know. The last time I visited my doctor, she said she didn't know. My doctor is currently on vacation, so I was seeing an APN, and she wasn't inclined to make a guess. She did say that she didn't think sirolimus was a likely culprit, an earlier hypothesis, since it has been quite a while since I stopped taking it.

What other explanations are there? GVHD, though my symptoms have been receding. Or an autoimmune response that targets platelets, which is supported by positive tests for platelet antibodies. Or the return of leukemia.

I don't want to think about the last possibility, but I can't help it. It is not my doctor's style to hide bad news, but maybe she has chosen to spare me a disturbing suspicion until she has actual news to talk about. I'm disturbed anyway.

I would be on edge even without the negative blood counts, since I am waiting for biopsy results. The edge has been sharpened by the last few blood counts and the recent don't-know-what's-going-on stance of my caregivers.

I have another blood test tomorrow, and I may get preliminary biopsy results today or tomorrow. Depending on the results, I will either be tentatively relieved (while awaiting the more comprehensive results in early July) or forced to think about what I am unsuccessfully trying to not think about.

Blueberries

I started the day picking blueberries in the backyard. We have three small but mature bushes, which have been producing about a half cup a day for a couple of weeks now. Unlike last year, the birds are leaving the berries for us. The bushes would be more productive if properly pruned, but I've been otherwise occupied during the last couple of winter pruning windows. If I skip a day of harvesting, I bring in a cup and share them with Jan and Paul.

A half cup a day isn't enough to make a pie, but it's enough to make a classy upgrade to breakfast. I don't know that I could tell the difference in a blind taste test, but it seems like the berries I bring in from the backyard taste better than any other blueberries. I do know I enjoy them more

It's been fairly quiet on the medical front for the last several weeks. I continue to have little bit of rash and dry skin. The contractures (muscle and tendon pain) have been diminishing. I did call my doctor once, after a bloody stool, but it ended up being an isolated incident, and I didn't need to go up to Chicago for testing.

At my last appointment, my platelets were down from the previous visit, after a long stretch of climbing. Why? Who knows? My next appointment is Monday, and I'm hoping the platelets are on the way back up again.