Monday, July 25, 2005

Bone marrow biopsy looks good

Hello, friends!
Another day, another update…

The news is good! The doctor called at noon today to say that the results of last Thursday’s bone marrow biopsy were back, and that the marrow “looks good”—the blast cells (immature white cells) that were present in the test sample looked “completely different” from the leukemic blast cells in the original biopsy.  
So I’ll begin “consolidation chemo” sometime next week—three days per week, one week per month, over four months.  This week I’ll have another biopsy (to make double-sure I’m leukemia-free) and have a catheter implanted for use during the chemo.  The doctor tells me I should expect to be pretty “wiped out” during the weeks when I’m getting chemo, and for several days afterward.  Can’t say I’m looking forward to that!

But what I am looking forward to is spending more time at home (even better since Anna has her office here at the house!), visiting with friends, and healing.  And of course Dillon’s with us too, very much a part of the healing process.

So that’s the news for today.  Again, my heartfelt gratitude goes out to all of you, individually and collectively, for your good wishes and your prayers, your phone calls and your emails, and for the cards and flowers and audio books and many other gifts for which I haven’t yet thanked you properly.

Take care and be well, and thanks, thanks, thanks—

John, Anna, and Dillon

Saturday, July 23, 2005

At home!

Dear Friends—

Here’s the good news: I’m home!!!

I’m sitting at the desk in my study, looking out over our jungly backyard, and so thrilled to be home I can hardly stand it! Last night I slept in my own bed, with Anna by my side, for the first time in 28 days; no one woke me at midnight to give me meds I could have taken an hour earlier, no one came in at 6 AM to draw the daily blood sample… It was wonderful! I’ve been luxuriating all day in just being home—even being able to lie down and rest in different rooms is a treat…

We came home about 5:30 yesterday (Friday 22 July) after a long, long day of waiting for word from my oncologist, Dr. Tucker, about the results of Thursday’s bone marrow biopsy, latest in a continuing series…. Anna had gone across the street to Texas French Bread, to get an iced coffee for herself and a brownie for me (needed in order to satisfy my “high caloric requirements”).  There she found Dr. Tucker, who had been talking with the pathologist on the phone about my test (results weren’t in yet) and had stopped off to buy cookies for his kids on his way over to the hospital to see me. (Yes, Austin is a casual place!)

The pathologist hadn’t in fact been able to reach a definitive conclusion: there were some blast cells (immature white cells) in the sample he was examining, but evidently he couldn’t tell for certain whether they were normal cells (immature white cells on their way to becoming something useful) or abnormal ones, the kind that leukemia causes to proliferate wildly. So he had sent for some of the slides from the original bone marrow biopsy that had been done on 26 June, and that’s where things seem to be right now—we’re waiting for the word.

There are three possible scenarios:
  • The test is inconclusive and I go to the doctor’s office on Monday for yet another bone marrow biopsy (this will be #5). I think this is the most likely.  Then we wait again for the results, which would probably come sometime Tuesday or Wednesday.  Depending on the outcome, I either go back to the hospital for another round of inpatient chemo, or I stay home and recuperate some more, then begin “consolidation chemo” as an outpatient the following week.

  • Second possibility: the pathologist detects leukemia cells in Thursday’s biopsy and I check back into the hospital for another round of inpatient chemo…Keeping our fingers crossed that this isn’t it.

  • Third possibility: the pathologist concludes that my bone marrow is free of leukemic cells and I stay home, then start consolidation chemo as an outpatient next week.  This is my personal favorite among the scenarios…

  • Meanwhile, I’m at home with Anna and Dillon, reveling in being here, in being able to see the sunlight outside without having to go out into the intense Austin heat, and deeply, deeply grateful for the love and support and good wishes that continue to come from so many friends in so many places.  I can’t tell you how much the love and prayers have meant to us; I know that each of you is a vital support in my recovery, and I’m grateful beyond words.

So here’s to being at home, and here’s to all of you.

More soon.

John, Anna, and Dillon

Sunday, July 17, 2005

An update from Anna

Hello again friends: John & I wish to thank you for your non-stop concern and loving gestures---a singing get well CD, a cookie bouquet, blueberry sodas, books and music CDs of all kinds including "John's Chill-Out," Indian prayer chants, Dave Van Ronk, Prairie Home Companion, a local French folk dancing band called Rumbullion, healing flute music, an Umberto Eco novel, many mysteries and much much more. A special thanks goes out to Sharron Rush for obtaining for my laptop--and to Celia Hughes for installing--a Sprint wireless card that allows us Internet access from John's room (no hotel-style access available from this hospital :)

Countless hours have been spent here by sweet sweet people, some of whom have spent nights in the camp style cot by John's bed during the first 10 days he was here (when he couldn't walk or feed himself)--while I actually got good sleep in the rollaway. And deep gratefulness goes to Morgan who still has Dillon in his family. We love all of you and have learned lifetimes worth about the power of love!

As I sit in his room today (2:30 pm on Saturday), John is dozing from Tylenol & pain medication to reduce the fever which has been coming and going for a few days. He often has chills and shivers (which are considered "normal" for this phase) but most of the time is quite comfortable for someone with a temperature that rises to 103.6.  The oncologist who made rounds this morning reminded us that this is "Day 20" as counted from the first day of chemotherapy. Although the actual chemotherapy I.V. was completed on Day 8, there is a time lag of about 2 weeks between halting cancer cell production and John's re-generating his own disease-fighting white cells. During the time gap, John's immunities are pretty much absent. The infectious disease specialist, who also follows John daily, due to John's susceptibility to catching infections, has escalated John to 4 anti-infection drugs --one anti-viral, one anti-fungal and two antibiotics. Blood cultures are sometimes ordered, and have so far always resulted in "negative"--or no known infection--which is common in this phase of therapy and is therefore dubbed "neutropenic fever" (neutropenic meaning no natural immunities).

The great news is that the results of the bone marrow test this week were very favorable--No more cancer cells! So he is officially in remission. This hospital stay will not include another round of chemotherapy--only that John's blood cells, both white and red, normalize. We have early indication that the cell-normalizing process has already begun but may require John to be here another 1-2 weeks. Dr. Tucker promises "before the 1st of August." I sort of think it will be earlier, given how well John is doing but don't know. Apparently some in this current phase of treatment have to be fed intravenously and can't eat on their own. John, having been told that he has "high caloric requirements" has requested milkshakes 2 days in a row--(I went out to a place called EZs that makes homemade shakes I've always coveted). Breakfast requests have included an almond croissant from Sweetish Hill Bakery, and cinnamon rolls, blueberry
muffins, and a ham and cheese croissant from Texass French Bread across the street. Last night he had a cheeseburger from Hyde Park Bar & Grill. John has lost 20+ pounds but doesn't recommend this as a weight loss technique!

It has been a pleasure to see various wonderful people in person more than we ever have the chance to do under ordinary circumstances. John's father, Myles,is here for the second time in 2 weeks from Buffalo, NY.. A former graduate student of John's who now runs a university graduate program visited today along with his wife and a former colleague in a business venture. Current UT colleagues brought lunch and another trio of close friends in the Austin arts community all came by today. We are so blessed.

May all of  you guys stay healthy so we can just keep celebrating a whole lot more!
John just told me he plans to write the next update!!...So stay tuned.........
Anna and John

Saturday, July 09, 2005

Anna tells our friends what's going on

Hi loving friends: Most of you already know (and a few don't--sorry if we haven't called yet) that John has been in St. David's Hospital in Austin for 2 weeks with Acute Myeloid Leukemia. He wants to say hi to all of you (and many others I don't have email addresses for) and thank you for your love, prayers, positive energy, visits, gifts, and help of all kinds.

He is feeling a whole lot better today, having completed his chemotherapy with few problems (so far only a reddish purple rash all over his extremities)—now a lot stronger and able to walk down the hall with his walker and IV.

He'll be here another 2 weeks or so with the follow up plan from smart (and fun :) oncologist Tom Tucker being outpatient consolidation chemotherapy one week a month (M, W, &F)  for 4 months. John plans to resume normal (OK not superhuman:) duties as soon as possible and he still intends to deliver a keynote conference address in Asturias Spain the week of Thanksgiving.

As you may also know, we brought John into the hospital on Sat 6/25 with shortness of breath and leg swelling that our internist thought was a heart problem. It turned out that his out of control white blood cells (all 238,000 of them) were working hard to shut down his respiratory & cardiac functions. The ER doctors made the leukemia diagnosis through a routine ER blood test and John was thrust into a whirlwind of activity the next morning including a bone marrow biopsy, leuco-apheresis (a dialysis-like process of cleaning out the white cells through some tubes placed in the jugular vein), and chemotherapy. The chemotherapy lasted 8 days and he withstood it well with little nausea or other problems.

However, his body was pretty wiped out in the beginning because of the excessively high white count (usual counts for people coming in with leukemia are under 100,000.) By the time they started the leuco-apheresis his count was 277,000 white cells. This made the leg swelling & shortness of breath even worse and he developed clots in lower legs and in the neck where the tubes were placed. These have required constant monitoring with x-rays, ultrasound & CT scans. After small clots were discovered in John's lungs a radiologist inserted an IVC filter into his vein between the groin up to just below the lungs to create a "badminton shuttlecock" effect preventing larger leg clots into the lungs. This filter cannot be removed and we hope will cause no problems.

Also he had some pneumonia upon entry and is slowly recovering from that. So the punch from the initial wild white cells has been the worst part of John's adventure so far.

And now for the important part: Where is Dillon? For the first few days of this adventure, Dillon was living here at the hospital along with John and me (John has a large room and I have a permanent rollaway). Drs. were fine with it so I and others were taking turns taking Dillon for walks, but he was having to lie quietly most of the time while John lay in bed. Then the wonderful Morgan Watkins, John's UT colleague and fellow graduate of Guide Dogs for the Blind in San Rafael, CA(Morgan's also on the board of directors there), stepped in along with the support of his wife Dede, son Richard, guide dog Will, retired former guide dog Fantom, and pet dog (all 3 dogs are golden retrievers). Morgan and Dede are hosting Dillon during John's stay here. Morgan has also practiced guide dog commands with Dillon every day and Dillon gets to play and sleep with the other 3 dogs in a large fenced backyard and his own third story guest "bedroom."

Update: Saturday 7/9 9:30 am. Dr. Tucker just walked in and confirmed that John should count on the Spain trip and I'm excited because I get to go too!

Bone marrow biopsy on Monday should tell us more re: how long this hospital stay will be--Will update you guys ASAP with results.

John wants to thank each of you again for your love and support and misses being with you "out in the world". He continues to enjoy the visits and food from local friends who are stopping by.

Please forward this to anyone you know who I've missed and feel free to write back so I can add your email address to this list.
Anna and John