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Archive for June, 1998

It’s nearly two months since I’ve written a journal entry.  Friends have
begun to send me concerned notes, asking what the silence means.  So here’s
the latest:

The good news: there is no sign of cancer (I’ve seen a surgeon and had a
mammogram, both with a clean bill of health).  My appetite is good, my weight
is holding steady at 120 (which I’m delighted about), and my hair is growing
in nicely.  I’m gradually getting more energetic, and continuing to enjoy my
time with family and friends and work (on my nonprofit
cyber-accountability listserv) and lots of volunteer work for the West End
Synagogue.

The more challenging news: I’m still on an emotional and physical roller
coaster in relation to my blood counts, though there is good reason to
hope that the bone marrow will fully recover in the next six months or
so.

My bone marrow has been slow to recover, so I still have needed occasional
blood transfusions.  This can be scary and discouraging at times, but mostly
we’ve been handling it OK.  Though I sometimes get tired (especially when
the red blood counts get very low), I’m usually able to be active in a normal
and pleasant range of activities (except for sometimes not being able to do
vigorous activities, like Israeli dancing at our synagogue retreat).  Here
are the numbers since the end of March:

WBC   Hct   Hgb   Plat
3/25  3.6   23    7.8   49 (transfusion of packed red blood cells)
3/30  1.7   32.2 10.9   21
4/3   1.5   27.4  9.5   8  (platelet transfusion)
4/8   1.4   26.1  8.9   33
4/13  2.1   25.8  8.7   38
4/16  2.2   25.4  8.5   31
4/22  2.6   24.6  8.5   40
4/28  3.1   24.8  8.4   32
5/6   2.3   24.7  8.3   30 (got a bad cold & congested chest on 5/10, which
                           lasted to 5/30)
5/18  2.1   24.6  8.4   33 (started guaifenesin cough medicine & inhalers
                           on 5/19)
5/26  2.5   22    7.4   27
5/29  1.7   19.9  6.6   14 (transf. of packed red blood cells & platelets)
6/3   2.0   32   10.5   48
6/9   1.8   29.2  9.8   22

As you can see, I had had a packed red blood cell transfusion on 3/25 and a
platelet transfusion on 4/3.  The blood counts dropped gradually for a few
weeks but then held steady until 5/18.  Then the blood counts plummeted again
so that by 5/29 they were the lowest they had been in the past six months.
That really scared me – but there is a good chance that this was a temporary
problem caused by a cold and congested chest, and/or by cough medicine.  (The
cold and congested chest have completely cleared up by now.)

I had a transfusion of red blood cells and platelets on 5/29, and the counts
responded very well – they were back up to hct 32, hgb 10.5, plat. 48 by
6/3.  On June 3 I also had several other blood tests (reticulocytes, “chem
20”), and the oncologist’s secretary left a message saying these all were
normal. I later was told that the normal retic count (of 1.4%) was
disappointing – this would be normal for a person with healthy blood counts,
but with low counts one would expect that the bone marrow would be producing
reticulocytes at a higher rate.

Saturday I had a terrific day – did yoga and jumped on my trampoline
(very gently, for 10 minutes, to music) in the morning.  In the afternoon we
walked in Central Park for about 3 hours.  I really felt healthy and
energetic.  Then I slept really well at night, and did more exercises Sunday
morning.  But on Sunday I felt a little less energetic, and was wondering if
this is related to blood counts heading downward again.  By Monday I felt
stronger again, and on Tuesday I spent much of the day walking around the
city.  And so it goes.

My oncologist, Dr. Martin Oster, and the stem cell program director, Dr.
Charles Hesdorffer, conferred in the last couple of days and came up with
this plan.  We’ll simply watch the counts, with weekly blood tests, for
another month.  If they start going up, we’ll do nothing, and expect them
to recover on their own, though Dr. Hesdorffer expects that it will
continue to be a slow recovery.  If they stay steady or continue to go
down, we’ll do another bone marrow biopsy at the end of the month, and
consider starting on neupogen, epogen, and neumega – all things that
may help stimulate the blood counts.

I don’t fully understand all this, but I have confidence that doctors Oster
and Hesdorffer are a great team, and that they are providing the best of care.

In the meantime, we’re planning a two week trip to Israel from August 1-16,
to attend Joseph Yudin’s wedding (he’s the son of my cousin Susan Bograd
Yudin).  We’re working on plans for a side trip to Egypt to see the
pyramids!  This is especially exciting for us, because Sarah did a terrific
research project on the pyramids for history class this year – and Sarah
loves learning about architecture.  I’m hoping my blood counts will
cooperate, so I won’t be too tired for the sightseeing.

Margie is home working as an intern at People for the American Way for the
summer – she is one of 80 interns supported by philanthropist Henry Everitt.
All the interns meet weekly to share experiences.  She is learning a lot,
and enjoying social and cultural life in New York.  It is great to see her
able to relax after work, with no homeowrk or other obligations.

Sarah is thrilled to have finished the school year (her middle school chorus
sings at their high school graduation today, and then she is all done).  She
is going to camp for three weeks this summer and to Israel for two weeks –
the rest of the summer, she’ll savor her free time.  She spends a lot of time
on the computer and the Internet, sending messages back and forth to old and
new friends.  We’ve also agreed to pay an hourly rate for her time studying
Hebrew this summer, in preparation for the trip to Israel – using a computer
program called “Triple Play Plus Hebrew.”

Sarah and Margie are adoring each other this summer, which is a joy to
watch.  Sarah enjoyed going out to dinner late Saturday night with Margie and
several visiting friends.

Ken’s work assignments have shifted, so he is spending part of his time at
a new desk on Bankers Trust’s trading floor, serving as a team member as they
design custom-made deals for major clients.  He is terrific at designing
computer models to analyze and explain financial and tax aspects of these
deals (mainly using Excel spreadsheets).  This work is more varied and
challenging than his previous assignments, and involves getting to know many
new people.  He is enjoying it and seems energized by it.

I’ve been nominated to join the board of the West End Synagogue, and have
agreed to become chair of their membership committee.  I’ve been
working hard at recruiting new members, and also have been doing a lot of
work on organizing our data on prospective and current members into a
Microsoft Access database, and evaluating whether to continue working with a
homemade system or to buy a commercial synagogue package.

Love,

Harriet

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