Monday, June 25, 2007


Today-- June 25, 2007-- marks two years since I was first diagnosed with Acute Myeloid Leukemia. I'n here!!

It was in the Emergency Room at St. David's Hospital on 32d Street in Austin. Anna took me in there with the help of our trainer, Marc Heard, knowing that I'd resist, knowing that I'd argue we'd seen the cardiologist teh day before and he'd set up one more test for us on Tuesday (this was Saturday). They did the CBC three times-- not believing, not wanting to belive the counts they were getting: my white blood count was up at 238,000 (normal is something like 4,000-12,000). Dr. Kilbourn, who must have been on call for Southwest Regional that weekend, told me what I had, that it was "life-threatening(no kidding: I had 24-48 hours before my system shut down completely), and that while it was standdard to discuss treatment options with patients before starting treatment, for me "there were no options": we started treatment as soon as the right people and equipment could be assembled.

On my most recent trip to Seton I saw Dr. Kilbourn again. I shook his hand, said there was something I'd been waiting almost two years to tell him. I hard the wonder in his voice. "What?" he said, "Thank you," I said, and still he didn't get it. "For what?" he said. "You saved my life," I said. I started to tell him, and then he started to remember.

I remember. Thank you.

Wednesday, June 13, 2007

john, dillon & anna @ home (by anna)

hi everyone: we are in celebration mode and have been since the moment we came home from seton hospital on monday a.m. dillon has been jumping around playfully--day & night (ughh--wants to chase sounds in the backyard fountain at 3 a.m:) since we arrived.

i wanted to thank all of you for holding us in your prayers and positive intentions and for the many who have sent cards, called, and visited. over the weekend in the hospital and since we've been home, peg syverson, ted smith, linda ferrera-buckley, dana fris-hansen, mark holzbach, deborah hay, rino pizzi, bill nemir, charles chen, kurt heinselman, liz cullingford, alan friedman, evan carton, janis bergman-carton, & glenda sims have visited, many with food. thank you all.

john is here--without infusions attached to his arm! personal trainer marc heard comes every day to do exercises with him for his myopathy from the steroids. john is walking well but has a bit of a tremor related to the neuropathy which we are hoping to cure with supplements, acupuncture, and ice cream (adds john). i must note that ice cream is not allowed for me, as i've had to start lifting weights and watching my diet carefully again--to cure the effects of butt-in-chair syndrome experienced from hospital overdose. on a serious note, john's tremor is affecting his typing so we have resolved today to chase it down with our full attention.

i am working long days here at home with the wonderful diane colvard. diane has assisted john, dillon, and me personally in immeasurable ways. i am working on a project with wonderful cape cod friends steve and helen schoonover and their amazing dogs misha, mona, and bailey. the project will involve me in going to korea in july and again in august and i look forward to it.

meanwhile on the grandson front, little wolf is bigger and healthier every day and his parents in san francisco are very happy. i hope to stop there on july 16th on my way to korea.

much love to all,
anna and john and dillon

Monday, June 11, 2007

Home! Home!

I’m sprung from the hospital! We got back to the house at about 10:45 this morning, somewhere around there; I went to bed; Anna and Diane went back to work, and Dillon bit his bed, humped it, and fell happily asleep, which nicely expresses the sheer physical pleasure of being at home.

I still coldnt manage to get a functional Internet connection at Seton. Why I dunno. Hence my continued silence. But I’m home now, so that should change things a bit. And I hope (Please!!) I’m here for a while.

More tomorrow. I’m tired now and going to stop in a minute. But I wanted to tell you how much I love you and how much your love means to me and how much it’s helped us get through what’s been possibly the most difficult period in the nearly two years we’ve beeh dealing with this. So thank you, thank you, thank you.

Much love,

John and Anna and Dillon

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Wednesday, June 06, 2007

Deja vu all over again, again

Well, I'm keeping my streak alive: I was home for 24 hours, it was wonderful, and now guess what? No, really--you have 2 guesses about where I am. If you guessed Seton Hospital in Austin, you would be right. Dr. Tucker called me at about 5:10 this afternoon and had just gotten off the phone with Dr. Jones at MD Anderson in Houston, and from what I remember of what he said, a test made yesterday before I left now shows that I have some sort of bacterial infection which, if untreated, could be fatal--and I should go to the hospital tonight; it didn't matter if I went to Seton or MD Anderson.

I also had a conversation with Dr. Kilbourne who's on call tonight and he told me that the infection is related to the PICC line in my vein (IV catheter for delivering multiple or long-term IVs). In any case, I'm getting IV antibiotics to squash whatever bugs shouldn't be there. I'm sure I'll be here a few more days at least (when have you heard that before?) because the drug has to go its course plus they need to do blood cultures to prove the infection gone--and the lab work for that takes 24-48 hours for each series.

Anyway, I'd appreciate your contact with me here. It was a wonderful 24 hours at home--Am looking forward to going back. Anna and Dillon are with me now here. Just before going home from MD Anderson, Anna got to visit our new grandbaby Wolf (& Wolf's parents Ledia and Paul, Uncle Mason and uncle's partner Melissa) in San Francisco while I enjoyed the lovely visits of Jay Byrd, Judith Sokolow, George La Salle, Larkin Tom, Leonard Van Gendt, Ted Smith and Mary Alma Welch.

I'd appreciate seeing you here in Austin if you can come by anytime. (Also lunch or snacks welcome Anna reminds). No masks or gloves required this time. I am available by cell phone 512-784-7533 or room phone 512-324-1731 or email to Anna Also, my laptop is really being repaired--I'll try to get it back tomorrow.

Love, John (& Anna and Dillon)