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Archive for December, 1998

Today is the first anniversary of the day I entered the hospital for the stem cell transplant.  There is still no sign of any recurrence of cancer, my blood counts are very encouraging, and I’m feeling fine.  Today’s blood  counts: white blood counts, 3.2, hematocrit, 33.2, hemoglobin, 11.1, platelets, 33 (33 days after my last platelet transfusion!).  It is likely that I won’t need any more transfusions.  I’m feeling very grateful about  this, and grateful to all of you for your support.  (For those who want a more verbose version of the health report, I’ve included one below).

The rest of the family is fine:  Sarah has a part in the middle school play.  Margie just became co-chair of Yale’s Hunger and Homelessness Action Project, and she continues to love Yale.  Ken is trying to discover what it will mean when Deutsche Bank acquires Bankers Trust Company (but he isn’t feeling very threatened by the takeover).  And I’m continuing to be involved in efforts to promote nonprofit accountability, and to be very active as membership chair and computer chair at West End Synagogue.

We just celebrated my mother’s 90th birthday, with a party on 10/25 for friends and family, and on 10/26 (her actual birthday) for the neighbors in her building.  Although she often has difficulty walking and she needs to sleep a lot, my mother is still living independently, and still making new friends and keeping the old (the birthday party included at least 4 friends from her Girl Scout days).  The greetings she got on her birthday called her “Madame Indominable” – and she continues to inspire many others with her optimism and spirit.

Since I’ve had cancer, we’ve been splurging on family travel. During Christmas vacation, we’re going to New Mexico and California.  Sarah has been dreaming for years of going on an overnight train.  We’re flying to Santa Fe on 12/20, taking an overnight train with sleeping accommodations, the “Southwest Chief,” to Los Angeles on Christmas eve, staying in LA from 12/25-12/29, then taking the “Coast Starlight” train up the California coast to San Francisco, and flying home on 1/3.  It’s been a big challenge making all these plans, but now I’m really looking forward to the trip.

THE LONG-WINDED HEALTH REPORT:

As you may recall, I was needing frequent transfusions of packed red blood cells and platelets in June and July.  My last red blood cell transfusion was July 23, and since then I’ve been giving myself injections of Procrit three times a week.  My red blood counts have been rising steadily – today my hematocrit was 33.2 and my hemoglobin was 11.1.  My white counts have stayed well over 2.5 – today they were 3.2.

The intervals between platelet transfusions have gotten longer and longer,  and in the past five weeks they seem to have stabilized.  The strategies we were working on just a few weeks ago now seem unnecessary.

Up until recently, I would routinely get a platelet transfusion if the counts went below 20,000 – or even if they were around 22,000 and I was about to leave town.  On November 4, Dr. Hesdorffer (the head of the stem cell transplant program) wrote to me:

I would also no longer transfuse platelets unless below 10,000 as you might now stabilize in the teens with a slow gradual increase from there. If there is any question about bleeding I would rather you take a drug called amicar (500 mg tabs) take 2 – 4 times per day. This should prevent or help prevent bleeding at low platelet levels.

I faxed a copy of Dr. Hesdorffer’s message to Dr. Oster, who agreed with this strategy (we agreed that we would talk about starting Amicar if the  platelets went below 15,000).

But since my last platelet transfusion on October 29, my platelets have been holding steady in the 30’s (people say 30 when they mean 30,000).  The transfusion was 10/29.  After that, the platelets were 36 on 11/16, 34 on 11/24, and 33 today (12/1).  Although these platelets are still much lower than normal, and we still don’t know why the recovery has been so slow, this is a dramatic and reassuring turn of events.

(I’m still looking forward to the time when the platelets rise above 60.  I received a gift certificate for a massage and manicure at a beauty spa at Bloomingdale’s, but my stem cell nurse told me to wait to have the massage until the platelets reach 60 – to avoid the risk of bruising).

Love to you all.  If we don’t speak sooner, best wishes for the holiday season and for the New Year.

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