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Cancer-Free But Not Anxiety-Free: Transfusions, Procrit, Cortef, Neumega, a Hospital Stay

More Transfusions, and Leaving for Israel

I’m at a quiet moment after a stormy week – and a somewhat stormy past six
weeks.

I continue to feel well most of the time, and to be enjoying friends, family,
work, and volunteer work for the West End Synagogue.  Ken and I spent a
wonderful Fourth of July weekend at the Kripalu Center for Yoga and Health,
and I’ve been pampering myself by following through on some new habits to
manage stress better – like breathing deeply, chewing food slowly, getting
exercise, etc.  We’ve been enjoying having Margie home for the summer, and
having Sarah back from three weeks in overnight camp.  We’re all leaving for
a two-week trip to Israel on August 1.  While Sarah was in camp, we enjoyed
Tanglewood (twice), the New York Philharmonic, American Ballet Theatre,
Pilobolus Dance Company, and a George Bernard Shaw play at the Roundabout.

(I can’t resist:  In addition to my work as membership chair, I’ve made it a
passionate hobby to upgrade the synagogue’s computer systems.  Please let me
know if you or your workplace has computer equipment in very good condition
that you’d like to donate – I’m still looking for two Pentium 90 or better
computers, some 486 or better laptops, working printers, modems, monitors).

But my health situation continues to be a roller coaster.  The short version
of the story is that though there is still no sign of cancer, my blood
counts have not recovered.  I continue to need transfusions, we’re trying
various drugs to see if they will help avoid the transfusions, but one of
these (Neumega, for platelets) landed me in the hospital for an overnight
stay this week.  I’m out of the hospital and the effects of the Neumega seem
fixed, but we still have not gotten to the point where we can relax and
forget about my health.

Feel free to stop at this point.  As you’d expect, I continue to play a
very active role in helping to coordinate my health team and in learning
to monitor the situation.  I’m writing the story in more detail so that those
who want to know all the details can find them here – especially in hopes
that some of what I’ve learned will be of use to others going through similar
treatments.

The Longer Version:

Initial reports from a second bone marrow biopsy (on 6/26) still say that my
bone marrow is working and is not malignant.  But I’m making history as the
first patient in the breast cancer part of the stem cell transplant program
who has gone so long with my counts staying so low.  While I made it through
two months from early April to the end of May without needing any
transfusions, lately I’ve been needing transfusions of packed red blood
cells and platelets more often again.

The transfusions aren’t unpleasant – the nurses are wonderful, and I sit in a
comfortable chair and relax.  I still have the double Port-a-cath, so my
veins don’t get messed up from repeated needles.  I came to a point in the
past weeks where we realized that it would be easier, emotionally, to start
thinking of these low blood counts as a long-term situation that we’ll live
with as well as we can, rather than holding our breaths expecting it to get
better any day now.  Of course, we could still be pleasantly surprised – but
we’re not expecting any speedy recovery.

The hematocrit, hemoglobin, and platelets rise nicely after each transfusion,
and the doctors are frankly puzzled about why they keep dropping again.
On June 30 I sat down with Dr. Hesdorffer (head of the bone marrow/stem cell
transplant program) and insisted on finding out what he was thinking, and
learned that I’m the first patient in this breast cancer stem cell program
whose counts have stayed so low for so long.  That was scary.  There is a
remote fear that this could be leukemia, though no other patient who has had
my high dose chemotherapy protocol has ever ended up with leukemia (there
have been a few cases of leukemia with lymphoma patients who had different
kinds of chemo).  My internist insists that people who are developing
leukemia look much sicker than I do.  I had a second bone marrow biopsy on
June 25, which so far has shown nothing bad.

When I pushed him to answer this question, Dr. Hesdorffer also said that if
I developed a recurrence of cancer, I would not be able to have chemotherapy
with these low blood counts.  (I found that distressing, since I know and
admire so many women who are living good lives for years while on chemo with
metastasized breast cancer).  I remind myself that there are also new gene
therapy and hormone therapies that are developing, and that there is a good
chance that I’ll stay free of cancer altogether).  Perhaps of greater
concern, even if I continue to be cancer-free, the transfusions themselves
carry risks – of building up antibodies, or too many iron reserves.

We’ve planned various strategies to attempt to reduce the need for
transfusions, but the one for platelets, Neumega, has already failed (see
below), and others are still too soon to tell.

First, the good news is that though they are low, my white blood counts have
stayed stable or even have been rising a tiny bit.  They varied between 1.5
and 2.5 (normal is 4 or higher) for a long time, and in the past week have
sometimes hit higher than 2.5.  My doctors all agree that these low white
counts are adequate to deal with everyday exposure to infection – I’m free to
go in subways, movie theatres, and hot tubs, and it’s OK to eat sushi. (We’ve
decided not to go to Egypt to see the pyramids, because we’re concerned about
sanitation there).  I do discourage people with very active colds from
getting too close.  I have only had one or two colds all year.

For my red counts (hematocrit and hemoglobin), I’ve started giving myself
injections three times a week of Procrit (also known as Epogen), which don’t
seem to have any side effects and in many cases help maintain red blood
counts and avoid transfusions.  It’s not clear to me how soon this is
expected to take effect – I started July 3.

For the platelets, there is a brand-new drug called Neumega (Interleukin-11),
which I started injecting daily on July 8.  It’s side effects made me
gain nearly 10 pounds of fluid in two weeks, and the fluid retention
strained my heart, causing rapid pulse, and irregular heartbeat.  By
Tuesday, July 21 my heart rate stuck at 150, and I had what was called
“atrial flutter with a 2 to 1 block.”  This landed me in the hospital by last
Wednesday, July 22 – and we are now relieved and grateful that I am back off
the Neumega and back with a normal heartbeat.  The hospital stay included
about nine hours in the Lenox Hill Hospital emergency room, which is more
dramatic than any soap opera.  Then I had a much more spacious and
comfortable environment in the cardiac care unit.  They managed to restore my
heart rate with intravenous drugs – and then to get the rhythm back to
normal, they used a little electric shock to the heart, called
“cardioversion.”  (Needless to say, Ken was at my side through all this and
could not have been more wonderful – and both kids visited me in the hospital
and were great – the staff in both hospital settings were also terrific).

My doctors worked quickly to deal with the atrial flutter, because if it is
treated immediately it almost always goes away – but if you leave it, it
might need much longer-term therapy.

The Neumega (which became available in November, 1997) helps chemotherapy
patients avoid platelet transfusions – one research study showed that it was
effective in 25% of patients.  However, it causes fluid retention in about
60% of patients, and heart arrhythmias and palpitations in about 10% of
patients.  When I started on it, I called the company who made it and spent
an hour discussing how I should monitor or manage the side effects.  I also
had talks both with my internist and Dr. Hesdorffer.  Nevertheless, I had two
episodes of rapid and irregular heartbeats on Thursday and Monday nights, and
then had an appointment with my internist, Maurice Beer, to meet with him to
start on diuretics.   When I arrived in his office on Tuesday, after a walk
outdoors in the heat, my heart went into atrial flutter.  I got their
attention and got them to do an immediate EKG, and we started trying to treat
it – by the next day when it hadn’t recovered on its own, I went into the
hospital.

While I was in the hospital, my hematocrit and hemoglobin dropped very
rapidly, and I needed another transfusion of two units of packed red blood
cells in the middle of the night.  I have no idea what caused that – it is
conceivable that it had something to do with the drugs they were giving me.
My platelets also dropped suddenly, and we arranged for me to be discharged
from Lenox Hill at 1:00 so I could get back to Columbia Presbyterian Hospital
for a platelet transfusion at 2:00 – I finally got home around 4:00.

After a month of lobbying with both of them, I got my internist, Maurice
Beer, and my stem cell transplant doctor, Charles Hesdorffer, to talk to each
other.  Dr. Beer had been suggesting some nutritional approaches, and Dr.
Hesdorffer started out leery of these.  By the time they talked, Dr.
Hesdorffer had concluded that nutritional approaches would do no harm  – so
Dr. Beer suggested a variety of vitamins (B12, C, and folic acid) and herbs
and diet that might provide better nourishment to the bone marrow and might
deal with a possible mild yeast infection in my system.  In addition, they
discussed what might be causing the low counts, and hypothesized that it
might be some kind of auto-immune (allergic) reaction to my own blood – so
they put me on cortisone (Cortef) four times a day to see if that helps the
blood counts.  As usual, that has me “wired up” and I’m playing with the best
things to use to get enough sleep.

So now we’re off to Israel with material for injections three times a week,
various pills many times a day, and a letter of introduction to a
hematologist at Hadassah Hospital who used to work with Dr. Hesdorffer at
Columbia, in case I need any transfusions while I’m there.

As Margie said, this week’s hospital stay reminded us of the Jewish folk tale
of the man who kept complaining to the rabbi that his home was too crowded.
Week after week, the rabbi had him keep moving more animals into the man’s
house – and when the rabbi finally told the man to get rid of the animals,
the man thought his home a mansion.  Likewise, we’re pleased and relieved
that I am home from the hospital, feeling reasonably well (though still a
little tired and wired from the week’s escapades), and “just” needing
occasional transfusions.

Love,

Harriet

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

What a relief.  My blood counts are rising and the bone marrow biopsy shows
that my bone marrow is working.  Dr. Hesdorffer thinks I won’t need any more
transfusions, though I may continue to be anemic for a while.

Ever since the radiation ended at the end of February, my bone marrow had been
“hibernating.”  I’d get transfusions of red blood cells and platelets, and the
blood counts would go up for a while and then start plummeting again.  When
counts were down, I was vulnerable to infection, bleeding, bruises, and I
could get very tired.  The transfusions improved the red counts and platelets,
but were time-consuming and had risks of their own – and the pre-medications
of cortisone left me sleepless and “wired up” for a few days.

We finally arranged for a bone marrow biopsy for April 8 to make sure there
was no cancer in the bone marrow, and to see what else we could learn.  It
took a week for us to get the results.  In the meantime, by Monday, April 13,
for the first time in six weeks the white blood count and the platelets had
gone up on their own (without new transfusions), and the hematocrit and
hemoglobin had gone down just a little – they almost stayed stable. That was
great news – it said the bone marrow had started functioning again.  (Walking
home through Central Park that day, I took a ride on the Carousel as my ritual
to celebrate the end of this ordeal).

Then today I finally got the results of last Wednesday’s bone marrow biopsy.
There was definitely no sign of cancer, and the marrow was “40% cellular.”
Dr. Hesdorffer says that result is “not bad” and didn’t account for the low
blood counts – it looked as if the bone marrow was working.  When he heard
that the counts had risen this week, he was very pleased, because that made
the whole picture make sense.  When they did the biopsy, the bone marrow had
probably already come out of hibernation – we just didn’t see it yet in that
day’s blood counts.

Last week, with my white blood count down at 1.4, I was refusing to hug or
kiss people at Passover seders, and I was nervous about washing dishes or
handling flowers or riding in subways.  This week, back at 2.1, Dr. Hesdorffer
says I can stop worrying about such things.

I’m still anemic (hematocrit 25), and thus get out of breath if I climb a lot
of stairs or carry grocery bags.  But I’m feeling much stronger now than I did
with similar counts in February or March.  My appetite is fine and my weight
is stable, and food tastes OK (but not so good that I want to eat
compulsively).  I’m having no trouble with the Tamoxifen pills that I take
daily for hormonal therapy.

Dr. Hesdorffer (head of the stem cell transplant program) and Dr. Rescigno (my
radiation oncologist) will continue to debate whether indeed the radiation
therapy was the cause of my depressed blood counts.  Dr. Rescigno wonders
exactly what mechanism might have been at work that would have caused this
result.  Dr. Hesdorffer says he sees this pattern from time to time, and he
guesses that radiation caused the problem, even if they don’t understand why
it happens.

I turned 55 on April 6, and Margie will be 19 this Saturday.  We’re going to
New Haven to take Margie out to dinner.

I’ll cut this short because I still have to finish my taxes and it’s April 15.

With these biopsy results, Ken and I are feeling that we can treat the cancer
as a thing of the past.  That really feels good!  As you can imagine, my
mother is really joyous.  I was also touched by a call a few minutes ago from
my transplant case manager at Oxford Health Plans.  She said it took her an
hour to get up the nerve to call and find out my biopsy results, because she
was worried about what she’d hear – and she sounded really delighted at the
results.  We’ve never met face to face, but she’s been a steady support (as so
many of you have been).

Best wishes to all of you for Passover, Easter, springtime, or whatever else
you’d like to celebrate.

Love,

Harriet

[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

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

It’s been a long time since I’ve sent you all an update.  A lot has happened
in that time.  I’ve finished the four weeks of Interleukin-2 injections, and
Ken and I were very pleased that these were finished last Sunday.  The red
lumps and bruises on my thighs are still healing – they’ll clear up in a
few days – but I’m delighted not to have to give myself Benadryl, Advil,
and an injection before bed every night.

I’ve completed three weeks and one day of radiation therapy – and have two
weeks and four days left. My blood counts are still bouncing around, making me
anemic and therefore a little tired and washed out.  It’s hard to know
whether to blame the radiation therapy, immunotherapy, previous high-dose
chemotherapy, or a combination of all three.  I still walk 2-3 miles several
times a week, but walking isn’t as pleasurable when I’m tired.

I get a bit nervous about my fluctuating blood counts, although the medical
people are perfectly confident that they will go back to normal within a
couple of months after the radiation therapy is over. This morning my
hematocrit was 24.9 and my hemoglobin 8.5 – and my white blood count was down
to 2.4 (it had varied been between 4.7 and 6.1 between Jan. 16 and last
Monday, Feb. 9).  On the other hand, my platelets had gone down to 48,000 last
Monday (from a high of 87,000 on 1/23), and are back up to 67,000 today.  Dr.
Rescigno, my radiation oncologist, wants to persist with the radiation
therapy and not take a break unless the counts go down much lower – since the
radiation therapy is more effective if given without a break.

Eating continues to be a challenge.  Many foods still taste bad and I feel
very full after eating a small amount, though I can tolerate an increasing
number of foods. I’ve lost another six pounds since starting radiation (I’m
now down to 121 lbs.), and the doctors and nurses really want my weight to
stay steady. This means forcing myself to eat many small meals a day, and
eating relatively high-fat foods. Tonight we tried ice cream, and I managed
to tolerate (even enjoy?) Starbuck’s Chocolate Chocolate Fudge! Yesterday, on
the other hand, I tried a Cadbury’s Fruit and Nut bar on the way to
radiation, and could only managed to eat half of it at a time, and really
didn’t enjoy it.  What a strange experience!

Of course, I’m also overjoyed to be slimming down.  When dieting is so easy
and effortless, it takes determination and self-discipline to get myself to
eat that Chocolate Chocolate Fudge!  <G>  Clothes I try on in stores fit
better than ever (although most of the pants in my closet are now very baggy).

On Monday, Jan. 26, in the dressing room after radiation therapy, I
discovered a lump in my remaining right breast.  I happened to be on my way
to an appointment with my oncologist, Dr. Martin Oster, a few hours later.
In between, I had plans to spend time with friends from my Columbia
Presbyterian support group.

When Dr. Oster examined me, he thought the lump was unlikely to be cancer,
but he wanted a surgeon to check it.  He arranged for Dr. Peter Geller to see
me later that afternoon and my support group friend, Gail Berson, spent most
of the day waiting with me (she was going out that evening to celebrate the
end of her own radiation therapy).  Dr. Geller also thought it was probably
not cancer, but he did a fine needle biopsy, and found that it did not appear
to be a cyst.

It was a harrowing week.  The first few days I spent most of my time
coordinating my team of doctors – making sure that the radiation therapy
and stem cell doctors had no objection to my having an excisional biopsy,
keeping everyone on the medical team informed of what everyone else was
advising, making arrangements for exactly when and how we could expect
results.  Though I felt powerless to affect the outcome, I transferred all my
energy, skill, and fighting spirit to try to get answers as fast as
possible.  We decided not to inform family and friends (and Web site) right
away, since we hoped this was “much ado about nothing,” and didn’t want to
spread anxiety unnecessarily.  We were very grateful that our team of
doctors and nurses were with us at every step, deeply concerned and
enormously helpful.

The doctors told us that even if this was another cancer, it would not affect
my long-term prognosis – but we had trouble believing that.  The lump was
especially troubling because Dr. Resigno had examined me on January 7, and if
the lump was there at all at that time, it was no bigger than a pea – and
three weeks later it was nearly 2 cm. The pathology results from the fine
needle biopsy came in on Wednesday as “nondiagnostic.” Dr. Geller squeezed me
into his schedule to remove the lump (an “excisional biopsy” – also known as
a “lumpectomy”) late on Thursday, and arranged for a pathologist to stay late
to do a frozen section.  By 7:10 Thursday evening, Dr. Geller informed us
that there was a 98% chance that it was benign.

Finally, about 4:20 p.m. the following Tuesday, Dr. Geller told me that the
final pathology results showed that it was indeed benign.  There was some
“lobular neoplasia” (as there had been in my other breast, along with the
cancer) – this is a condition that is not considered “pre-cancer” but which
is an indicator that I am at higher risk than normal of getting a new cancer
in the other breast (perhaps a total risk of 25% over my lifetime, assuming I
live a long life).

I had expected to be very relieved when we got the final pathology results –
I thought of the Jewish folk tale about a family which is terribly crowded.
The rabbi tells the father each week to move more and more animals into the
house.  When they final get rid of all the animals, the home feels spacious.
I hoped that, similarly, when we found the lump was benign, “only” having
radiation and immunotherapy would seem easy.  But in fact, I didn’t feel all
that relieved.  I felt tired and irritable from having been through this
additional ordeal.  On the day of the excisional biopsy, I had radiation
therapy in the morning, surgery in the afternoon, and Interleukin-2 at night
– and then radiation therapy again the next day. That was a lot to handle,
emotionally and physically.

I am now thinking that I want to have a prophylactic mastectomy on the right
breast, rather than face the possibility of many more benign lumps and many
more lumpectomies – let alone the risk of a new cancer (with lymph node
removal and possible radiation and chemotherapy).  Last June’s mastectomy was
very easy for me – and a prophylactic mastectomy should be easier, since they
wouldn’t also have to remove underarm lymph nodes during the surgery.  We
will wait until I’m fully recovered from the stem cell transplant before
undertaking any new surgery.

I’m due to start five years of tamoxifen pills (“anti-estrogen”
hormonal therapy) early next week.  There’s a good chance that I’ll get
through that with few side effects – though some women have hot flashes,
night sweats, weight gain, or other varied problems.  My oncologist had told
me to start on Monday – but I’m now thinking I’ll wait until I have next
Tuesday’s blood counts (Monday is a holiday), and then I’ll check in with him
before I actually start.  I’m uneasy about adding a new source of side
effects and anxieties before the current picture settles down (though I
understand that there is an argument for starting the hormonal therapy sooner
rather than later).

Ken, as always, has been wonderfully supportive through all this.  Here’s an
example: Dr. Geller, our surgeon, agreed to let Ken come in with me for the
biopsy.  When we asked if Dr. Geller wanted us to leave him alone, he said
that he did prefer to have us talk to each other and allow him to concentrate
on the surgery.  I was pretty tense, and was trying hard to relax.  I asked
Ken (a wonderful storyteller) to tell me a story.  He spent the next half
hour describing the two of us at an imaginary picnic in Antigua, with flocks
of birds flying by, views of gardens and the sea, the kids playing happily
nearby, and a beautiful sunset.  I felt very loved and cared for.

To sum it up, I’m doing just fine but wouldn’t call myself exuberant right
now.  I find it easier when things improve in a steady, predictable fashion;
the bouncing blood counts and unexpected lump, though benign, have us
feeling a bit tired and vulnerable.  We are looking forward to being done
with the radiation therapy on March 4!

Love,

Harriet

[From Pauline, Harriet’s mom]:

I’m at Harriet and Ken’s for one of my frequent Shabbat visits.  I’m
so glad to have this opportunity to thank everyone who has been so
instrumental in encouraging all of us every step of the way through this
challenging period.

I’m so proud of Harriet and Ken and their kids, and I’m so proud of
Naomi.  Through it all, we all had a sense of optimism and gratitude that
things went so well.

Heartfelt thanks from all of us.

Love,

Pauline

[From Harriet]

I’m sorry if I left you in suspense after my January 6 update.  Things
have been going uphill ever since (except that today I was really tired and
slept much of the day).

My blood counts are the best news, and mean that we are VERY likely to be
able to go on vacation to Antigua on March 13, as planned.  I started the
Interleukin-2 injections last Monday, Jan. 12, and they will continue for 28
days.  There are minor side effects – mild redness and soreness at the site
of the injections, and some aching and itching at night – but I have learned
to control the latter by taking two Advil and one Benadryl before bed (along
with my 1 mg. Ativan, which helps me sleep – I may try cutting back on the
Ativan soon).

I’m scheduled to start radiation therapy this coming Tuesday, Jan. 20.  I’ve
had two visits to the radiation therapy department, at 60th and Madison, and
was able to walk home (about 1 1/2 miles) each time.  I’ve already had the
“simulation” and x-rays, and everything is in order.  The simulation can be a
difficult experience for women who have just had lymph node surgery, since
you need to lie still with your arm over your head for about 30 minutes.  But
since I’ve had plenty of time to regain flexibility in my arm and shoulder, I
was able to relax and stay in the required position without difficulty.  The
staff of the radiation therapy department is terrific.  I will be having
therapy 5 days a week at 10:15 a.m. – it will give me an excuse to get
outdoors and walk around the city more than I otherwise would.  The
appointments last only 15 minutes.

Here are my recent blood counts. They had been stuck at a plateau for a
while, but we’re very pleased that they’ve been steadily increasing in the
last week.

The counts are WBC (white blood count), Hgb (hemoglobin) and Plat
(platelets).  The platelet counts are really given in thousands.

Date:    12/29    1/2    1/5    1/9     1/13   1/16

WBC:     2.5      2.7     2.6   2.9     3.9    4.7   (normal: 3.9)

Hgb:     10.8     10.1    10    10.1    10     9.8   (normal 11.6)

Plat:    36       31      34    46      61     65    (normal 150)

My terrific radiation oncologist, Dr. Rescigno, had said that he wanted my
platelets to be up to 50,000 before he started radiation therapy.  We have
reached that goal, and we’re pleased that the counts haven’t dipped again
after I started the Interleukin-2.

The kids are settled back in school, which gives me much more free time.
Margie got into a drawing class that she was very eager to take.  Sarah got
over her cold, and is in much better spirits.

On Wednesday night we saw The Capeman, the new Broadway show by Paul Simon.
Before I entered the hospital I had checked on the availability of tickets,
but I didn’t dare buy any for January, not knowing how I’d be feeling.
We loved the show, but even more we were very grateful that I was strong
enough to enjoy it.

On Thursday morning we had a meeting at Sarah’s school on East 77th Street,
and I walked home through Central Park.  The day before, coming home from
60th and Madison, I was afraid to walk through the park for fear that the
hills would be difficult and that I wouldn’t be able to get a cab if I got
tired.  By Thursday I was confident that I could do it, and walked home
through the park easily.

Love,

Harriet