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Archive for March, 1998

[I’m actually finishing this at 2 a.m. on 3/27].

The good news is that my treatments are over, I’m healing, and we had a
perfect vacation in Antigua.  The discouraging news is that my blood counts
are still troubling, and this means twice weekly blood tests and repeated
transfusions, and when I’m anemic I don’t feel as strong and energetic as
I’d like.  I’d hoped that the vacation would provide closure to nine months
of intensive treatments.  But like the Children of Israel who crossed the Red
Sea and escaped Pharoah’s oppression, I now might be facing a long sojourn in
the desert of low blood counts before I reach the promised land when I can
stop focussing on illness and medical care.

I’ll tell you about my health first, and then about the vacation.

I finished radiation on February 27, 4 weeks ago.  Since then the radiated
skin has healed perfectly – all the dry, sore top layer peeled off, and the
new skin is healthy, soft, and comfortable.  I’m grateful to Joyce Rosenfeld,
my radiation oncology nurse, for guiding me through the process of skin care
during radiation therapy, so it never got too bad, and it healed quickly.

My taste buds are also improving.  I can now eat most foods without
shuddering, and though the taste isn’t always perfect, it’s close to normal.
On the other hand, my appetite still is so-so, and I have continued to lose
weight.  I’d be gloating about this – I’m at a perfect weight now (and Ken
and Margie are both jealous) – except that it would be healthier to stop
losing weight.  My digestive system gets better and worse (it’s better at the
moment) – and at the moment I’m avoiding all dairy products to test whether
I’ve become lactose intolerant.

My hair is growing in.  I’ve pretty much stopped wearing my wig, and feel free
with my very short hairdo; I carry a hat for when my head gets cold.  When
we were in Antigua, Sarah finally came to terms with seeing me with my head
uncovered.  I could stay cool and enjoy the breezes on my scalp.  I
actually went into a beauty salon today and paid them to trim the hair on the
back of my neck!

Blood counts have been my big issue lately.  When white blood counts (wbc)
are low, there is a higher risk of infection.  When platelets are low, there
is a high risk of bruising and bleeding.  When red blood counts,
hematocrit (Hct) and hemoglobin (Hgb) are low, I feel more tired and less
energetic, and my pulse races if I walk quickly or uphill. None of this is
really so bad – I haven’t really gotten any infections or fevers, the few
bruises have not hurt, and I’ve only had one mild bloody nose.  The real
issue has to do with the time it takes to get blood counts and transfusions
(I’ve been spending 2-3 days a week at the hospital), and the worry about how
long this will continue.

Here are the recent results and remedies:

Wbc       Hct     Hgb      Platelets

2/17       2.4       25.7    8.4      64,000
(finished radiation 2/27)
2/27       2.3       20.8    7.3      20,000 (taken from port)
2/27       2.7       23      8.2      28,000 (taken from vein in hand)
3/3        2.1       21.8    7.7      31,000
3/5        2.8       22.7    7.6      15,000
(3/5 – transfusion of red blood cells and platelets)
3/10       2.4       30.2    9.9      23,000
3/12       1.9       31      10.4     16,000
(3/12 transfusion of platelets)
(3/12-3/26 injections of Neupogen, to stimulate white blood cells)
3/23       2.1       25.2     8.4       8,000
(3/23 transfusion of platelets)
3/25       3.6       23       7.8      40,000
(3/25 transfusion of red blood cells)

The beginning of this week (3/23) the counts were particularly worrisome to
me – the white blood counts had not gone up much after 10 days of Neupogen,
and the platelets were alarmingly low.  (Platelet transfusions are only
expected to last 3-4 days, I recently learned).  It looked like my bone
marrow had temporarily stopped working.  The doctors and nurses assured me
that this is not unusual after radiation following high dose
chemotherapy/ stem cell transplant, and it was only a matter of time until it
recovered.  I continued the Neupogen a few more days, had a platelet
transfusion, and my oncologist was very encouraged to see the increases by
Wednesday, 3/25.  He predicts that things will start getting better now, but
we are watching it closely and will continue with transfusions as long as
necessary.

I also started the tamoxifen pills last Sunday, 3/22.  I’ll take these
daily for five years.  It is hormone therapy which is supposed to reduce the
recurrence of cancer, though how it works is a mystery to me.  So far the
only side effect has been subtle temperature changes – I get warm and find
myself taking off a sweater or hat or opening a window.  No dramatic
problems with tamoxifen so far.

The vacation:

From 3/13 to 3/20 we went to Antigua, as planned.  We brought along Margie’s
friend Diana, Sarah’s friend Lisa, and our family friend, Heather Colbourne,
who comes from Antigua.  Heather’s sister, Noella, also joined us for part
of the week.  We stayed at the fabulous home of Uncle Dalton, Heather and
Noella’s uncle. His garden was the closest we’ll ever come to the Garden of
Eden.  If you stepped out of the house in any direction, you walked into
trees which grow mangoes, coconuts, papaya, oranges, tangerines, lemons,
limes, grapefruits, wild almonds, cashews, cinnamon, tamarind, bananas, and
more.  The mangoes, limes, grapefruit, and banana were all ripe while we were
there.  We drank tea each morning made from leaves picked from the soursop
bush.  When we finished eating papayas or mangoes, Uncle Dalton threw the
seeds in the garden – he says they grow best when thrown on the ground to
take root on their own.

The veranda in front of the house was even more wonderful than I had
dreamed.  The roofed area was at the other end of the large porch from
the house, so that the breezes went by in all directions.  We were up on a
hill, and had a panoramic view in three directions from the luxurious
reclining chairs.  Even if it was very hot in nearby St. John’s, Antigua’s
capital, the verandah was always pleasant and breezy.  We spent a lot of time
just reading or staring at the view from the verandah.

Uncle Dalton is an accomplished chef, and he cooked many suppers for us, and
catered a party for 22 people in honor of Ken’s birthday.  We also found a
vegetarian restaurant run by Rastifarians where we had two vegetarian meals.
This restaurant had a hammack where Sarah and Lisa could play when they got
bored sitting at the table.

The family’s friends and relatives made us feel welcome everywhere we went.
It was impossible to walk a block in St. John’s without running into an old
friend of Heather’s who was thrilled to see her.  Two friends of hers took
the day to take us sightseeing around the island.  Margie and Diana had a
great time going “clubbing” with Heather and her friends at night.  Sarah and
Lisa preferred staying home and being lazy or playing in the garden.

The beaches all over Antigua are very beautiful.  We had several magnificent
swims in the ocean.  But then Lisa got stung by something in the ocean –
perhaps a man of war.  People led Ken and the girls to the hospital, where
Dalton and I joined them.  Lisa was cared for promptly (with shots of
cortisone and antihistamine), and recovered nicely, but none of us wanted to
go back in the ocean after that.  We were impressed that the medical care for
children was free of charge.

I was proud of myself that I had planned this terrific vacation, and that it
all worked out so well.  It really was a wonderful break from all the
treatments.  Ken also had a well-deserved rest, even though he paid lots of
attention to the littler girls.  I didn’t attempt to do anything very
strenuous, but I relaxed, read several books, and enjoyed the people and the
environment.

Margie and Diana have now returned to Yale, and Sarah is still on vacation
(she’s gone off for a four-day weekend to her friend Ann’s country house).
Ken and I have a weekend by ourselves – we saw Titanic last night, have
friends coming for dinner Friday night, services Saturday morning, and a
family wedding on Saturday night (of Sharon Kroll, my cousin Ruthie’s
daughter).  It should be a pleasant weekend.

My mother was hospitalized with a kidney infection the week before we went to
Antigua, and she has been feeling tired and weaker than usual since she got
home.  She has 24-hour a day help for now.  She continues to be in good
spirits, and very alert.  We’re praying that she’ll feel better soon.

Love,

Harriet

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I finally am beginning to feel a sense of closure that this breast cancer
treatment is over!  I still need to start taking tamoxifen, and take it for
five years – and I still am probably going to have a prophylactic mastectomy
either in June or September (we’re meeting with the surgeon about this on
April 3).  But the more difficult treatments, with the greater risks effects,
are now over – with no longlasting side effects (I do still have a bad taste
with certain foods, and some lack of appetite).

Radiation Therapy

I had six weeks of radiation (actually, 28 treatments), and finished last
Friday, Feb. 27.  The staff at the 60th and Madison radiation oncology
department are fabulous, and the treatments were punctual, lasted under 5
minutes each, and were never more than mildly uncomfortable.

I had originally been scheduled for 30 treatments, but Dr. Rescigno decided
that 28 was sufficient and the “cost/benefit analysis” didn’t justify the
extra two.  When he grappled with the decision, it helped that I firmly
supported the option to skip the debatable treatments. (I was ready for
this partly because my acupressure therapist had remarked, “I hope they
aren’t giving you more radiation therapy than you need.”)  The research does
not show an increased benefit for 30 treatments instead of 28. There was a
risk that additional treatments would depress my blood counts (and I was
anxious about whether it might also permanently damage my bone marrow).  My
skin was red and peeling, and the extra treatments might have caused more
painful side effects (my skin is now recovering beautifully – the dead skin
is peeling off, but there is very little pain, and no complications.  The
current recommended treatment for the peeling skin is a long, lazy, luxurious
daily bath!).

My pulse was pretty high the last few weeks of radiation, and my blood counts
were low, and this had me tired – and my pulse rate would go uncomfortably
high after even mild exertion (like walking up the slightest hill, or
sometimes even just getting up from sitting).  I still walked a mile or two
at least once a week, but the walking was much less pleasurable than usual.

Low Blood Counts and Transfusion

I’m writing this section in great detail because some people who are about
to have stem cell treatments read this journal and want the details.  Feel
free to skip or skim it – the bottom line is that I had a transfusion, had a
fairly strong allergic reaction that subsided in under 30 minutes, and now
I’m likely to feel much stronger by tomorrow.

By the last day of radiation (Fri, 2/27), my blood counts were really low.
From the port-a-cath, the white blood count was 2.3, hematocrit 20.8,
hemoglobin 7.3 and platelets 20,000.  I had been told that the cutoffs for
recommending transfusions was 25 for hematocrit, and 20,000 for platelets.
The nurse then redid the blood test from a vein in my hand (in case the blood
via the port-a-cath might be diluted from the Heprin and saline they use to
flush the port).  The repeat results were only a tiny bit better: wbc 2.7,
hct 23, hgb 8.2, platelets 28,000.

The low counts were consistent with the fact that I was feeling pretty
fatigued.  We still managed to drive to near Great Barrington, Mass. to take
Sarah skiing for the first time and to have a fancy dinner with our friends
Liz and Lonnie Gross in celebration of the end of my treatment.  Though I
took it as easy as I could (I had Ken carry all the bags, and I sat in one
place while Sarah skied), I was still tired.  But I did manage to enjoy the
fancy dinner at the Swiss Hutte across from Catamount ski area.  On Sunday we
drove to New Haven to have dinner with Margie and her friends at an Indian
restaurant – I needed to lie down for a while before dinner, and the Indian
food tasted awful to me with my distorted taste buds.  Going up and down
stairs in the dorms made me breathless and made my heart pound.  The fatigue
detracted from the pleasure of the visit.

On Tuesday the counts were: wbc 2.1, hct 21.8, hgb 7.7, and platelets
31,000.  I did my usual polling of my doctors and nurses by phone and e-mail,
and (to make a long story short), Dr. Rescigno and Dr. Oster recommended a
transfusion, Dr. Hesdorffer suggested repeating the blood count on Thursday
and seeing if the transfusion could be avoided, Joyce Rosenfeld (the
radiation oncology nurse) also would think twice before agreeing to the
transfusion for herself (though she thought either choice would be
reasonable).

I did have the repeat blood count this morning, and it was wbc 2.8, hct 22.7,
hgb 7.6, platelets 15.  Dr. Oster had arranged for Dr. Hesdorffer to cover
for him at 9 a.m.  Dr. Hesdorffer thought these new counts showed that things
were stable, and improving gradually, except for the platelets.  He suggested
that I have another platelet count tomorrow, and allow the blood to recover
gradually on its own.  I had also had a reticulocyte count of 1.3% on
Tuesday, which showed that the bone marrow was making at least some red blood
cells.  Dr. Hesdorffer thought that the “retic” was a good sign (and it
reassured me, since I was beginning to worry that the bone marrow had stopped
working altogether).

I was really glad that I had insisted on talking to Dr. Oster a second time
yesterday, and had pinned him down that he would recommend a blood
transfusion if the hematocrit was below 25 (I knew he would be hard to reach
Thursday morning).  When I told Dr. Hesdorffer what I thought Dr. Oster’s
recommendation would be, Dr. Hesdorffer said that going ahead with the
transfusion was also a valid choice – the decision was up to me.  It was a
hard decision, but I decided to risk the blood transfusion and start feeling
better sooner.  In addition to two units of red blood cells, Dr. Hesdorffer
ordered 6 units of platelets.

The blood transfusion, which was scheduled for 9, didn’t start until almost
noon, because of a mixup with Tuesdays “type and hold” blood sample.  The two
units of red blood cells went in fine.  But after I got the platelets, I had
a fairly strong allergic reaction – I had hives, mild cramps and trembling,
and asthma.  I was coughing up lots of yellow mucous, was breathing very
rapidly, and had trouble even talking because I was so short of breath.  I
felt very frustrated that I didn’t have my asthma inhaler with me, which
would have helped.  When I reviewed the side effects with my huge panel of
advisors, no one alerted me that some of the side effects are allergic.  I so
rarely get allergic reactions (mainly when in musty places or with cats) that
I don’t routinely carry an inhaler.  I think the lesson is that I should
always carry the inhaler, or at least always when having medical treatments.
They treated the allergic reaction with an injection of benadryl (25 mg) and
an intravenous steroid (solumedrol, 125 mg), and my breathing was back to
nearly normal in about 20-30 minutes.  If this hadn’t worked, they would
have sent me to the emergency room for asthma treatment.  They didn’t want me
to go home alone (for fear I’d fall asleep in the taxi), and I called Liz
Gross and she came and rescued me.

I was lucky that I had a photo ID with me – they would not have given me
the transfusion without it, and no one had informed me of this rule.

The team at the chemo center (where they drew my blood) and the apharesis
center (where they gave the transfusion) were all absolutely wonderful to me.
Both Dr. Hesdorffer and Dr. Oster came in to check on me.  The nurses and
apharesis center doctor (Dr. Williams) all remarked that it was unusual and
wonderful that I hadn’t needed a transfusion up to now since I got home from
the hospital.  Dr. Williams asked if I had had any complications from the
stem cell transplant, and I said only these low blood counts, and she said,
“That’s par for the course, it’s not a complication.”  I found that
reassuring.

We’ll check my blood counts again next week, since Dr. Oster wants to see
whether I need yet another transfusion before vacation.  If I do need more
platelets, they’d pre-treat me with benadryl to avert the allergic reaction –
and I’d bring my inhaler!

Family News

Because of the blood sample mixup, I got out so late that I missed Sarah’s
first swim team swim meet.  Sarah (sixth grade) swam against a high school
student from Friends Seminary, and came in less than a body length behind the
older student.  We’re very proud that she did this well!  Sarah then managed
to get to Hebrew School by herself, using a new bus route for her (I had
warned her that I might be delayed, and sent a note giving her permission
to travel on her own.  When she couldn’t find a cab, she took two busses
intead!).  We’re proud of this, too.

Margie is getting a lot more comfortable with the workload at Yale – she
manages more and more very competently without getting anxious about it.  It
will be great to have her home for vacation for two weeks starting March 8.

Ken is having a good time at work teaching people in other parts of his
company how to construct more intricate financial models using Excel
spreadsheets.

I spent my last week of radiation writing a grant proposal on “State
Charities Offices and Technology” which I submitted to the Aspen
Institute’s Nonprofit Sector Research Fund.  If it is funded the study will
begin next October.  It felt good to get back to more intense work.

Love,

Harriet

P.S. (3/6 – the next morning): I really AM feeling great this morning.  The
transfusion really seems to have helped – both in terms of my feeling
stronger, and in terms of my mind finally believing that the ordeal is over.

Love,

Harriet

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