Monday, December 25, 2006

Day 125: New Year Letter, Big News from Ledia!

There’s Big News from the Carroll-Slatin household for 2006:
We’re going to be grandparents!
Ledia’s pregnant! It’s going to be a boy, and he’ll be born in May, in San Francisco, where Ledia and her partner, Paul, are living and loving, pursuing their visions as artists, landscaping, plumbing, fixing up their apartment, creating the future. So we’re going to be grandparents, Anna and I—Granna and Grandpa John! I feel like a happy Ma and Pa Kettle picture—I’m actually thumping that pitchfork against the ground to keep time with the band playing raucously happy music in the background.

Mason and Melissa are out there in San Francisco, too—for now, in fact, they’re living in Ledia and Paul’s big apartment on the edge of the Mission District (subject of Ledia’s most recent public art project). Melissa’s on semester break from her graduate program in Art Therapy, and Mason’s taken a few days off from his job at the ARC in San Francisco, where he helps his clients with their independent living skills.

And all four of them are here with us now! It’s such a joy to have them here—the house is full of life and love and light. (Anna’s got Christmas lights draped around the top of the dining room and living room, which creates a magical effect, especially when there are candles on the dining room table and the coffee table in the living room, and a fire in the fireplace, all of which there were last night: I see points of light dancing in the darkness, and it’s very beautiful. (The other night the candles were Hanukah candles burning in the menorah we got for a wedding present…)

Just now—it’s a little after 10 on Sunday morning—I’m sitting in the back room with my laptop. Ledia came in to the kitchen a minute ago and said hi; Mason and Paul are still asleep, I think, and Melissa’s gone off to BodyChoir with Anna. Very homey. All’s right with this little piece of the world.
I’m doing fine!
The other Big News is that I’m alive and well and home! And it’s a great, great joy to be here. Today is Day 124 post-transplant—four months! It seems both very long and very short at the same time. All my counts are good, a lumbar puncture two weeks ago showed no evidence of leukemic cells in my spinal fluid, and Dr. Andersson is pleased with my progress. So am I!

I’m still taking a raft of pills each day—still on ProGraf, the anti-rejection drug that holds the new immune system in check so it has time to learn that my body is its friend. And since that means I still don’t have a fully functioning immune system (it’s less than 18 weeks old, after all!), I’m also taking a bunch of other stuff prophylactically —antibiotics, antivirals, antifungals, and lots of magnesium to replace what the ProGraf leeches from my blood. But hey hey ho ho—as the song says, it’s all right. How could it be any better? I’m home with my family, I’ve celebrated another birthday (54) with good friends at the table; I’m eating well (but I sure would like a salad and some fresh fruit!), feeling healthy—even doing a fair amount of work. Soon I’ll be dancing at BodyChoir again. It’s great to be alive.

That said, I’m not sorry to see this year come to an end. It was a hell of a year on top of a rough 2005. Tomorrow will be 18 months to the day since my leukemia was first diagnosed in the Emergency Room at St. David’s Hospital. That was the beginning of a long, difficult journey for me and for Anna—beautiful, wonderful Anna; how can I say enough about you, how can I ever thank you enough? My warrior-fairy, beautiful dancer, architect of festivals of love—just the beginning. Along the way there have been times of terror and panic, times of tedium and tears, times of laughter and joy, times of sorrow and grief. Through it all there’s been a great love—from Anna, from Ledia and Mason, from my brother and my dad, from sisters-in-law and brothers-in-law and their kids and their kids’ kids, from friends (so many friends, old and new), from doctors and nurses and clinical assistants and lab techs. It came (and still comes) in phone calls and cards and emails and visits, in the touch of a hand, a hug, a kiss, an adjustment of an IV line, in cleaning out the plastic urinals and changing the sheets, in guiding me from point A to point B, in setting the weights at the gym—in everything people do for me or for Anna or for both of us. It just comes. I’m learning, slowly and with difficulty, to accept it, just accept it—not as “my due” or anything like that, but simply as a beautiful, wondrous gift.
It’s a gift that opens me up, allows me to feel compassion for the sufferings of others and for my own pain, too. In my grief for young Frank Jackson there is also terror for myself, and sorrow for the terrible grief of his parents, Frank and Rose. I feel an ache for my friend Max, who’s having to get additional chemo and additional lymphocytes from his original donor; pleasure for Jessie, who was on G11 (the transplant floor) and then in the ATC with us, who finally got to go home on the mend; and sorrow for Lela, who went home to a newly (re)ruined Beirut with her husband after the doctors said there was nothing more they could do, and for another patient whose name I don’t even know who heard the same terrible news the other day; and glee for Sherika (sp?), a young woman—just two years older than Frank, and also African-American, who heard the same news from her doctor and then, two days later, got out of bed and said “It’s up to me now” and started to walk, slowly and with lots of help from her mother and everyone else, changed doctors, and—as we heard just this morning (it’s Sunday now, Christmas Day, Day 125—left the hospital this past Friday and moved into a nearby apartment, doing well! And for Joe and his wife Diann, who also got to go home to South Texas after having had a rough time of it. And for other friends not connected to M.D. Anderson who are going through cancer now or have done it recently, Susan and Nancy and Kay, and especially right now for Albert, who lost his beautiful wife just a week ago. And there are the people I don’t know, like Leroy Sievers, the journalist who is bogging his own cancer on the NPR Web site, and the people who leave comments after his posts, telling of their own illnesses and treatments and results. Misremembered phrases from The Waste Land run together: My heart full, I cannot speak…. I had not known cancer had undone so many (funny—the phrase I completely suppressed says, “and my eyes failed”).

Speaking of things that fail, I had planned to include in this post something about the letters we’ve opened since Thanksgiving—but the hard drive on my big desktop computer failed on Saturday, failed utterly and completely, and until I can get someone to retrieve the data for me I don’t have access to the file where I’d written it all down. So for now I’ll just say that they were beautiful, all the more so because we got to read them at home in the comfort and peacefulness of our own living room, to which the love and compassion they express have brought us again. What they actually were and what they say will be for another post, along with other letters we’ve not opened yet. Thank you to all, and my apologies to those we haven’t acknowledged yet.

A word about that failed hard drive. If that had happened a year ago I’d have been beside myself, jumping up and down, banging things, cursing a blue streak—never mind that it’s my own fault for never backing anything up. But I didn’t do any of that—just stared for a minute, decided there wasn’t anything I could do about it, and opened up the laptop instead. It’s just a hard drive.

And that’s my point. It’s just a hard drive. It’s nothing compared to—compared to what? I can’t even think. Compared to the joy of being alive to write these words, the joy of being at home with Anna and Ledia and Paul and Mason and Melissa and Dillon, the joy of sitting in the bright sunlight poring into our little “porch room” behind the kitchen, smelling the turkey roasting in the oven, the cornbread that’s just come out, the cranberries stewing on the stove, oyster dressing in the works, friends on the way to join us for the meal.

Thanks, everyone. Happy New Year.