Day 89: Home at last!

Written on Thursday

It appears to be true—barring some unforeseen something, we’re heading home tomorrow! It’s a joyful, exciting, slightly bittersweet time—in the three months we’ve been here we’ve met some wonderful people, formed some intense relationships, been terrified, been elated, been watchful, learned a lot about ourselves individually and together, become even closer. And now this phase of our lives is coming to a close, and the next stage of the adventure begins. We’ve been overwhelmed by the outpouring of love and support from all of you, including people we may not even know, to whom these posts, I’ve heard, are being forwarded. There are people here whom we’ll miss very much, with whom we’ll try to stay in touch, both through the blog (which will continue) and more directly; we’ll see some of them when we come back for follow-up visits, but others, like us, will have gone home. There’s a certain sadness in this, the more since some of our friends are having a harder time in the aftermath of transplant than I’ve had so far. And in the past two days I’ve learned about two others—not people at M.D. Anderson—have relapsed or been newly diagnosed. Makes it hard to breathe. But at the same time I’m just beside myself with joy—sudden fits of tears, sudden bursts of laughter at some image popping up in my head out of nowhere.

Some poignant moments— Sunday night we had dinner with Lisa, one of the great nurses in the ATC—an ebullient woman who lights up the clinic with her caring, her good humor, her thoughtfulness. Tuesday night we had a surprise dinner with Rose and Frank Jackson, Sr., Frank’s parents, who had driven back to Houston for the hard task of cleaning out the apartment where Rose and Frank had spent so much time. It was a beautiful, joyous evening—Rose and Frank are such wonderful, strong, happy people, interested in others and in the world, and committed to making sure that their son’s life will continue to make a difference in the lives of others. Last night we ate with Mary Alma, the PA for Dr. Giles, the leukemia doctor who treated me in May and June and brought me back into remission to prepare for the transplant. Mary Alma was a terrific human presence during that terrible, difficult time, returning pages at all sorts of times, answering questions patiently and clearly, then answering them again when we forgot or didn’t understand what she’d said, helping us get some perspective. The treatment prescribed by Dr. Giles saved my life, together with the radiation treatments planned with care and precision by Dr. Dabaja, whom we visited in her clinic this afternoon for just long enough to say thanks and to give her a present—a soft, cuddly, stuffed yellow lab toy from Guide Dogs for the Blind (several people said it looked just like Dillon!) for her daughter, who wants a dog; and another soft cuddly thing for her brand-new son, Abbas, just a month old, who’s been in the hospital since he was born but may be coming out next week—what wonderful news. We said good-bye and thanks to the folks down in Physical Therapy, too—Steve, BJ, Gail, Shami—who’ve been terrific in helping me regain my strength. Tomorrow morning we’ll go to the ATC for the last time; besides saying good-bye to Lisa and the other people who’ve taken such good care of me for the past 60 days—Namshi, Tessie, Elsie, Juanita, Julie, Jennifer, Glenn, Craig, Elaine, Stacy, Andy, Ro, Michelle, Lisa< AND I’m sure others as well whose names I never caught. And we’ll see Dr. Andersson, who has to be the one to sign off on my discharge.

Post script, Friday

And today’s the day! JayByrd’s back at the room packing up the last or next-to-last of the stuff while we’re in the ATC. Before we got here, of course, we went to the Lab on the second floor for a blood draw. JoAnn, a matronly African-American woman with a deep, calm voice and a soft spot for Dillon—she’s done more of my blood draws than anyone else down in that labyrinth—walked me back out to the waiting area when we were finished; she turned to Anna and said, “There’s just one more thing I need from him,” then reached for me and gave me a great big hug and told me to take care of myself and stay away from sick people. What a nice woman.

Dr. Andersson came in with Elaine and the PharmD, liked at me for a minute, and said, “I think you should get out of here.” “Me, too,” I said, grinning. He did the usual exam, then—looked in my mouth, listened to my lungs, heart, and belly (which he also prodded), checked for swelling in the ankles—and said “You just couldn’t be doing any better.” Then we talked about follow-up, both at M.D. Anderson and here in Austin. First, we’ll have to go back on Monday afternoon for the Day 90 bone marrow biopsy, plus a 90-minute IV dose of Pentamidine, a drug they administer every three weeks to prevent a particularly nasty type of fungal pneumonia. Then we’ll go back to Houston on December 11 for another lumbar puncture (to check that the spinal fluid is still clear and give me a tiny dose of AraC just in case) and whatever else they think of between now and then. And in the meantime I’ll see Dr. Tucker on Wednesday afternoon at the Southwest Regional Cancer Center in Austin.

Then came the Big Moment. We heard footsteps and voices coming down the hall toward the room, and then they were all there—at least all the nurses and other staff people who weren’t tending to other patients elsewhere in the clinic—and they sang the “graduation” song for us this time: Shan a na na, sha na na na, hey hey, you’re going home! Anna and I were standing over on the far side of the bed, holding onto each other, laughing and crying, trying to say thanks but not able to get the words out for a while. Lisa hung a medal around my neck, like an Olympic medal on a red, white, and blue ribbon, and then bent down and gave one to Dillon, too (I don’t know that he was especially thrilled by this, but he didn’t object, just stood there as if of course he deserved a medal). There were hugs all around, and a few more tears, and then we packed up and left the clinic.

The one disappointment in all that was that they didn’t remove my catheter as we thought they would—they’ll use it to deliver Monday’s dose of Pentamidine and then I can get it out of my chest. So instead of going downstairs to deal with that—a very quick procedure—we went instead to the Infusion Therapy area on the second floor to have the dressing changed. That’s a quick procedure, too—about 15 minutes—but not today. Today the waiting area wasn’t just packed, it was thronged with people—people waiting to attend the 1:30 Catheter Care class, people waiting for their turn at chemo, people waiting to have their dressings changes, people waiting for God knows what. So we sat. And sat. Anna couldn’t stand the suspense any more and went to the library area to run an errand and find some reading material. She came back 30 or 45 minutes later, and I was still sitting where she’d left me. We sat some more. Finally I got up and walked toward the desk to see how many people were still in front of me, and just as I approached the tech called my name. So in I went, and from there it was indeed quick, maybe about 5 minutes or a little longer.

Now we were ready to go. We walked back across the Skybridge into Rotary House and across the second floor to the garage and into the car. Hurray! We were finally off! Anna put Asleep at the Wheel’s “Ride with Bob” CD on—it’s become our travel CD, a lively, happy rendering of classic tunes by Bob Wills and the Texas Playboys—and we pulled out of the garage. And into traffic—it took a full hour to get to I-10, normally a 15-minute drive. It was frustrating, but I didn’t care—we were headed home!

Post post script, Sunday

And what a fantastic, glorious welcome we got! As we turned the corner from Tom Green onto E. 35th Street and pulled up in front of the house, Anna suddenly shouted, “John! There are balloons! Our whole yard is covered with balloons!” and we were laughing and crying again, and when we got out of the car there were Jim Thatcher and Diana Seidel, Jim Allan (KC was home with a cold—sorry, KC!), Sharron Rush and Ron Hicks. Grinning, jumping up and down, celebrating with us. Pictures were taken. Dillon jumped up and down and greeted everyone. Then we all went inside and dinner appeared—Diana had made a lasagna and ratatouille, and Peg Syverson came a few minutes later to give me a great big hug and put a salad on the table (I couldn’t eat it, thanks to the continuing restriction on raw food, but I enjoyed hearing about it and smelling it). Later there was tea and coffee and fruit tart and chocolate cookies. The dishwasher was loaded, and Anna and I were there, in our house, in our own bed, weary and overjoyed.

It’s been almost 48 hours now, and the feeling hasn’t left us. Still elated, still deeply, deeply happy, feeling surrounded by love. We went to Hyde Park Gym yesterday afternoon for a workout—I was a bit humbled to discover that the weights I had worked so hard to lift in Physical Therapy were just a bit lighter than the starter weights on the equipment at Hyde Park, but no matter!—and Anna went to BodyChoir this morning while I stayed home and played on my computer, downloading first the newest version of my screen reader, JAWS (8.0), and then, with a gulp, Internet Explorer 7; neither has crashed yet. Nothing’s different, and everything’s different.