Archive for January, 1998

[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.



[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.




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I’ve posted seven new photos taken by my brother-in-law, Ed Robbins, on my
Web site.  They’re from the Shabbat celebration on Dec. 19, the night before
I came home from the hospital.  I’m really pleased with them – they are


[For those interested in the technology:  I’m excited to have learned how to
get pictures onto the Web – we had our photo store send the film to Kodak for
a “picture disk” – that had the right kind of files (*.jpg files) to add
images to a Web page.  I went crazy trying to get the pictures to appear on
my Web site until I figured out that the picture disk was using upper-case
filenames and I was using lower-case filenames.]

This was a less buoyant day than usual in our household.  Sarah has a cold
and sore throat – I got her to the pediatrician to verify that it wasn’t
strep, and then got her to school around 11.  I got nervous about the
fact that she was sneezing and coughing while we were in a closed car
together.  (It took me a while to figure out that I could just open the
windows and air out the car).  Margie has lost one contact lens and didn’t
bring home a spare, and has a headache from trying to see out of one eye
(Uncle Eddie is bring her replacements tomorrow). I was tired (though now
that I’ve taken a nap I feel better).  Then I found out that my blood counts
have continued at a “plateau” since last week – they have been rising and
falling insignificant amounts, but they haven’t risen high enough to start
the Interleuken 2.

Thus it is looking less and less likely that we’ll be able to have our
vacation in Antigua.  We’ll all be really disappointed if that doesn’t work
out.  My stem cell transplant nurse (Jane Dunleavy) insists that my blood
counts are perfectly normal for this stage, and nothing to worry about – the
only problem is that the kids’ vacation is coming too soon after the stem
cell transplant.



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Happy New Year!

Now that I’m home and things are going very smoothly, I expect to write
updates less frequently – every week or two weeks or so.  So don’t
worry if you don’t hear from me more often.

I continue to feel good, and to be grateful for things that I previously
would have taken for granted.  Today we drove with my sister Naomi to High
Point State Park, New Jersey, where she took Sarah cross-country skiing for
the first time.  Sarah had begged Ken to try to join the skiing, but Ken was
overjoyed to discover that Naomi had brought the wrong skis for him.  He was
very happy sitting in the lodge with me looking out at the beautiful view of
snow-covered lake and trails and trees, while he was working on a math
problem (one of his favorite pastimes) and I was talking with the people at
our table.  Sarah loved the skiiing, and Naomi loved having a new
cross-country skiing companion.  I was happy to get out and see nature and
snow, after having been indoors or around the city for so long. But then when
we got back, I loved the view of the lights across the Hudson, and the
crescent moon over the river – and I loved getting home to our city apartment.

We had hired Nicky Brown to look after me for the two weeks after I came home
from the hospital – and since I didn’t need nursing care, we turned her into
hostess and caterer – and we had company for seven Chanukah dinners
(including one birthday dinner for Sarah on the eighth night) and for New
Year’s eve.  We told all guests that we had a 9:00 curfew – even though we
would probably beg them to stay longer, they needed to turn themselves into
pumpkins at 9 p.m. so we could get some rest.  On the last night of Chanukah,
Ken brought home a family gift, especially for me – a thoroughly gaudy teapot
in the shape of Cinderella in her pumpkin coach.  It will be my souvenir of
this week of visitors and 9:00 curfews.

I do still get tired some of the time, and I still burst into tears of joy
or sadness (though less frequently than a week ago), and I eat small amounts
at a time.  Some foods still don’t taste good – but I’m very pleased that the
sweets don’t taste good, and the healthy lentil and bean soups and salads
that Nicky makes taste fine.  I’m pleased to have lost 15 pounds (down from
140 to 125) since I entered the hospital.  This is my normal desired weight,
but I had gained some weight before my diagnosis and was forbidden from
losing a single pound before the stem cell transplant.

If you’d like to join us to celebrate my recovery, here are open invitations:

1) Ken is reading the Haftarah (from Ezekiel) in celebration of my recovery
at West End Synagogue after 11:00 on Saturday, Jan. 3 – lunch follows – (190
Amsterdam, SW corner 69th St.)  (Service actually starts at 10:00 a.m.)

2) Margie is reading from the Torah same place, same time, on Sat., Jan. 10,
also followed by lunch.

3) We are going to a ballroom dancing weekend at Pocono Manor in Mt. Pocono,
PA, on the weekend of 1/30-2/1.  If I’m too tired to dance much, I’ll watch –
but I’m hoping to be able to dance quite a lot.  Pocono Manor Inn is a
50-year old resort, a “registered national Historic District.”  Zagat’s “U.S.
Hotels, Resorts, & Spas” says it gets mixed reviews from its customers – it
may be shabbier than even the Catskill resorts, the food may or may
not be very good, but we plan to have a great time there. There will be
non-stop dance classes and open dancing for complete beginners to advanced
dancers.  You won’t be able to avoid watching the dancers and hearing the
music, but if you don’t want to dance you can try the indoor swimming pool,
outdoor skating rink, fitness center, indoor and outdoor tennis,
cross-country skiing (weather permitting), and more.  The dance
weekend organizers expect about 200 guests, perhaps 25% singles.

If you have been thinking of learning to dance or improving your dancing,
here is great chance to do this while celebrating with us.  If you have
always been wishing that you could get your partner or spouse to learn
to dance with you, perhaps you can use my recovery as a motivation
[blackmail??] to get him/her to try. The weekend, including gratuities, costs
$250 per adult and $30 per child 12 or under.  If you are thinking about
joining us, send me an e-mail (including your snail-mail address) and I’ll
send you more details and tell you how to register.

I’ve been spending a lot of time making vacation plans.  Margie and Sarah’s
spring vacations overlap the week of March 13-20.  We’ve been close friends
for years with the extended family of Heather Colbourne and Nicky Brown, who
come from Antigua. (Heather worked for us two days a week since Sarah was
three months old, but has now moved with her family to North Carolina to work
as secretary to her brother-in-law, a physician. Nicky has just started
working with us, and is also wonderful.)  When Heather’s family learned that
I had cancer, they told me that we would be welcome to go and relax at their
uncle’s large country home in Antigua.  We have now arranged to spend  March
13-20 at “Uncle Dalton’s” home, with Heather as our travel guide and
companion.  He has a big suite for Ken and me in the main house, and a guest
cottage with three bedrooms for Heather and the kids.  He has an acre of
land, and spends most of his days working in the garden.  He assured me that
if I need to stay out of the sun, he has a large covered veranda with
reclining chairs, and lots of trees in the garden.  There are mangoes and
eggplants trees.  Uncle Dalton has worked as a chef and loves to cook for
guests.  I talked with him yesterday, and he sounds like a wonderful and very
considerate host.  Heather has friends and relatives all over Antigua, from
rich to poor, and she would love to introduce us to them.

The only hitch is that I have to complete my radiation therapy before we can
go.  We’ve made all the reservations with cancellation insurance, so there
won’t be a big financial loss if we need to cancel.  The problem is that
after my blood counts rose steadily last week, they were a little bit lower
last Monday (the white blood count was 2.6, and the platelets were 36,000).
We can’t start the immunotherapy (interleukin-2) until the blood counts rise
again and stay stable – and we can’t start the six weeks of radiation therapy
until 2 weeks after the immunotherapy.  And there can sometimes be delays in
the radiation therapy – a machine not working, or a day off for a holiday –
so the six weeks, five days a week, might spread out to 6 1/2 or 7 weeks.

A visiting nurse will be coming to my home every Tuesday and Friday starting
tomorrow to check the blood counts.  I have 10 weeks until the scheduled
vacation.  If the blood counts stabilize in the next two weeks (or
preferably a little less), we’ll have a good chance of having our vacation in
paradise.  If not, we’ll be very disappointed, but we’ll enjoy being together
in the city.

Note that my doctor is not at all concerned that the drop in blood counts is
of any long-term significance.  The suspense entirely relates to vacation

I had a great session yesterday with Julie Sandler, my yoga therapist.  In
addition to traditional yoga, Julie specializes in working with rubber
balls.  Yesterday she taught me all sorts of ways to relax, stretch, and
strengthen my body while working with a 75 cm yellow ball that we had bought
from Relax the Back.  I was feeling fatigued before the session, and felt
invigorated afterwards.

Last Saturday at the synagogue was very special.  Several close friends and
relatives joined us.  By Friday night I had learned to chant my three lines
of Torah rather haltingly.  But then I realized on Saturday morning that
Margie (my 18-year old daughter) has become a very skilled and musical
Torah-reader.  We got to the synagague at 10:30, and she and I hid in the
office for 20 minutes, and she gave me a lesson.  She helped me smooth off
all the transitions, got me to sing some of the notes more musically, and
helped me practice until I could chant the story (of Pharoah’s dream of the
sheaves) with music and feeling.  By the time I chanted the Torah, I was
proud of the job I did and even prouder of Margie’s teaching ability.

People keep asking me if I plan to publish this journal in a magazine or
book.  If any of you have suggestions of people to contact to make this
happen, please let me know.  It might be interesting to publish both my
journal and a selection of the responses I have gotten from readers.

Warm wishes to all of you for the New Year.



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