It takes until 5:00 PM before the predicted “afternoon sun” finally emerges. To be frank, I had given up on it. Still, though it’s been a prolonged gray day, the weather forecasters were right. It is “afternoon sun”. I hope that “beating cancer” and what the doctors and survivors say, that the sunlight of health will show up is true, even if it’s a long time waiting for it.
All the cancer news is good. The last test we’d been waiting for came in saying just what we wanted it to say; that the Philadelphia Chromosome has been eliminated from my body. If you’ve forgotten, since it’s been a while since I wrote about it, this is the once deadly abnormality that causes the cancer cells to grow uncontrollably. So we have the final test back to show that the transplant was successful. But you don’t get very far in the happy dance before other dark forces make themselves known.
CMV (cytomegalovirus) keeps stalking me. The numbers got up into the “ohmygod” region, freaking the doctors out. Mariya’s immune system is still too immature to fight it off. Plus all this immunosupression I am on keeps my body from mobilizing to slam the CMV down. CMV is in 50 % of adults, a leftover from many common childhood diseases. Normally your immune system just handles it. Since I wasn’t responding to the first more mild med, they put me on a much stronger med which injured my kidneys, and required lots of fluids to wash it out–so that was three IV two-hour long saline fluid sessions a day. Luckily I did this at home. The med itself took another hour and a half, so that was a total of nearly 8 hours a day with “mini Herman”, the portable IV pump. The numbers came down to “very high” to “high”. Last week, I entered a clinical trial for a new drug which will hopefully handle the CMV without destroying my kidneys.
Trying to put my body back into some kind of balance is definitely the battle now. After an endoscopy, I was told I do have GVHD (graft versus host disease) in the stomach. The symptoms are a drastically reduced appetite, feeling of fullness after just a few bites, vomiting and even more fatigue. As the days have gone by, and the pounds with them, I have nearly given up on food and now simply force myself to take in 3 Ensures or protein shakes a day to get calories into my system. The drug they give for reducing GVHD gave me high blood pressure, so now they have had to put me on a drug for that. The other therapy is steroids. The pharmacy compounded a formula which goes into my stomach with a milliliter of corn oil. This steroid is not system wide, so it is preferable to a powerful drug that affects the whole body. If I get better, I may be able to escape prednisone, which has so many side effects that I get sad just looking at them.
Both girls have gone from our lives like the passing of summer. Mariya has returned to Tahoe and school. And Tuesday, with a mixture of tears and excitement, Elena began her trip to Peru. It took her 2 days of traveling . . . made infinitely easier by a friend from Friday Harbor, who generously offered his house to her to spend the 10 hour layover in Atlanta. She is now in Cusco, in the shadow of Machu Picchu, an irony which is not lost on us, since that was our destination when all this began. Cancer gave us the gift of “La Familia”. Now we go back to our lives—but with this profound difference in our collective memories—this shared battle, deep love and mutual experience of the past several months. We are not the same people who began this journey in February. I could not imagine the cancer experience without my generous and loyal husband and children. It frightens me that others do without.
My steps will continue to be a choppy cha cha. On the positive side of things: I can now walk for an hour. Since I had to fight for that, I say it proudly. But today was shaky, literally. My body would have used the words of one of my favorite children’s books: “a terrible, no good, very bad day”. I—we—are all sick of this and want steady progress, but that’s not how it is. I am feeling strong enough to drive, but the GVHD fatigue is as bad as anything I have yet experienced. And on it goes.
This blog has not been my best writing, but it has always been honest writing. The aftermath of leukemia + transplant is bruising. Every time I start to express it however, a conflicting feeling catches me. I am ever so grateful to be cured of cancer by modern medicine, but also shaken by the treatment. It is difficult writing because it is complicated thinking through thorny feelings. Sorting it out will be the topic of my next blog.