Archive for February, 1998

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!




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