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Archive for September, 1997

More Ups and Downs

The three weeks since I last wrote in this journal has been a time of ups and downs – but with more ups than downs. Yesterday (Monday) was a somewhat difficult day. I had my first dose of Taxol last Friday, and started daily Neupogen injections on Saturday (to stimulate the growth of stem cells) – and by yesterday I was groggy, and had moderately unpleasant joint, muscle, and abdominal pains.
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Ups and Downs

Last Tuesday (9/2), I had my third and final dose of “CA,” cytoxan and adriamycin. As usual, I felt fine the first couple of days, but then Thursday through Sunday I’ve been queasy and tired (though still “out and about”). I’m optimistic that today should be the last day of the uneasy time, and the next two weeks should be fine. This has been the pattern through the past two cycles. Then, the next three cycles of Taxol should also go easily. It seems likely now that I won’t enter the hospital for high-dose chemotherapy until perhaps November 24, since my oncologist mentioned that he prefers to give the three cycles of Taxol every three weeks, not every two weeks.

I heard from my insurance company this week that they’ve approved my doctor’s plans for high dose chemotherapy and stem cell rescue. This is a very expensive procedure, and we were concerned that they might take a long time deciding, and that might mean I’d have to have extra cycles of chemotherapy just to “tread water” until the plans were approved. Instead, Oxford assigned me a nurse in the transplant program as “case manager,” to expedite all the red tape. It’s a relief that this is all approved, and wonderful that our insurance company has been so easy to deal with.
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More Treatment Plans

We just settled the date for my transplant last Friday. If there are no further delays, I’ll enter the hospital on Dec.1, immediately after Thanksgiving weekend. In the meantime, on Mon., Oct. 6, I’ll have an additional catheter inserted and start the pharesis – the harvesting of my stem cells.. I might need additional pharesis sessions, about five hours a day, on Oct. 7 and 8. Then I’ll have two more Taxol treatments on Thurs., Oct.16 and about Thurs., Nov. 6.
I’m looking forward to Yale parents’ weekend on Oct. 17-19 (though I’m prepared for the fact that I may be tired and ache-y from the Taxol), and to my Mother’s 89th birthday on Oct. 26.

I could have arranged to enter the hospital the week before Thanksgiving, but Ken and I realized we’d prefer to relax and enjoy Thanksgiving with the family, and especially enjoy Margie’s visit home from college. I didn’t like the idea that Margie would have to spend her first college Thanksgiving vacation attending to me in the hospital. If the hospital visit really is three weeks, with no complications, then I’ll be home in time to light Chanukah candles (Dec. 23) and to celebrate Sarah’s birthday (Dec. 30) – this will be soon after the kids’ winter vacations start.
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The Rest of the Family

The rest of the family
Sarah has missed a lot of school because of illness this fall, she continues to like school, and she continues to be very attentive to me. Yesterday we started her on antibiotics for a sinus infection, and she was back in school today.
Margie is having a fabulous time at Yale, though is still getting used to the pressure of weekly Directed Studies essays. We will love to see her for Yom Kippur and again at Yale for parents weekend.

Even though her own health is precarious, my mother continues to be an amazing support, and manages to keep me company at chemotherapy and pharesis appointments, so Ken can go to work. She helps me with paperwork, helps prepare the house for company and do the dishes, and showers love, optimism, and endless common sense on all of us. It gives her great satisfaction to still be able to do this – and we love it.

Ken continues to be the perfect companion for this journey, though it is often hard for him. He also spends a lot of time talking through Margie’s essay assignments with her. In honor of her paper on Homer’s Illiad, he wrote the last post for Margie:

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by Ken Klein
Could a brontosaurus use a thesaurus?
Compose a classic to end the Jurassic?
Lend distinction to total extinction?

He meditates on death and Eros,
Cosmic strings of ones and zeros.
Onward comet! Onward Cupid!
Metaphorically — don’t be stupid!
Lust for life and Paris burning,
Random chance and eras turning,
To the oracle — a misnomer,
Or so it’ll say in Chapman’s Homer.
A simile for fate as a bird —
If a dinosaur could but find the word.

[End of Ken’s opus]

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Ups and downs

The three weeks since I last wrote in this journal has been a time of ups and downs – but with more ups than downs. Yesterday (Monday) was a somewhat difficult day. I┬áhad my first dose of Taxol last Friday, and started daily Neupogen injections on Saturday (to stimulate the growth of stem cells) – and by yesterday I was groggy, and had moderately unpleasant joint, muscle, and abdominal pains.

By today I’m doing better. I’m much more awake, and the pains are less frequent and milder. The worst part of yesterday’s discomfort was not knowing how long the problem would last – it’s very reassuring to think it’s getting better by today. If the Taxol treatments only cause a few days of discomfort every three weeks, it won’t be hard to tolerate.

Since I last wrote about the side effects of the cytoxan/adriamycin (“CA”) chemotherapy, I had several more uncomfortable days – and found them difficult because I hadn’t expected them. I never got violently nauseous – just squeamish and lacking in appetite. Compared to others, I still had a very easy time of the CA chemo.

I also spent a lot of time talking to other women who had had stem cell transplants, and found myself getting frightened by the experiences of some, who continued to have very serious side effects long after the treatment. Several other women did very well, and were back at work, traveling, or otherwise enjoying themselves within a few months after the transplant. But after a couple of days of being fearful (about the possible fatigue, depression, digestive problems, hearing problems, shingles, etc.) I somehow snapped out of the fear (at the exact moment when I was doing a yoga stretch). When I told Sarah (age 11) that I had been feeling scared, she said, “I’m so glad to hear that you are a normal human being!”

Ken and I had a long talk about the fear in the middle of the night one night. I realized that I was worrying about signing the consent form for the stem cell transplant. If things went wrong, and the side effects were disabling, would we blame ourselves for having made the wrong decision, or for not having done a thorough enough job of thinking through my choices? I realized that I was more afraid of blaming myself (and feeling responsible for what went wrong) than of the actual outcome. We came to the conclusion that we had already done a very thorough job of investigating my choices, and that there was just as big a risk that we’d have regrets if I chose not to have the stem cell transplant. We somehow made peace with the decision, and stopped worrying about it. We are also aware that I am very lucky to have the opportunity to have this very promising treatment, with one of the best health care teams anywhere. (A close friend whose mother died of breast cancer said to me yesterday that he thought his mother might be alive now if this treatment had been available when she first got cancer).

This same period, since I last wrote, has been full of rich experiences. Except for a few hours yesterday afternoon, I have never been too tired or sick to do pleasant things, go out, or enjoy time with friends and relatives – and I still keep up with my professional listserv, and my e-mail and the Compuserve Cancer Forum every day. I spent a lovely day attending a professional seminar in New Haven, meeting Margie’s new friends, and then driving her back to New York for a satisfying visit.

During my first Taxol treatment last Friday, my mother and I had a great time visiting with one of my friends from my Columbia support group – we managed to get assigned to the chair next to mine. Then we met with my nurse, and then we started a game of Scrabble on the Travel Scrabble set that two cousins had given us. The time went so quickly we didn’t even get to finish the Scrabble game before the five-hour chemo visit was over. Then we went home, rested a little, and then hosted a birthday party for Micaela Hickey, my close friend. On the next day, Saturday, Ken and I went to services, took a walk, came home and hosted a havdalah/healing ceremony (a service for the end of the Jewish sabbath) with a pot luck meal at our apartment, then went back to the synagogue for “Selichot” services, which begin the high holiday season.

On Sunday, September 14, Ken and I took part in the “Race for the Cure” in Central Park, with about 18,000 people, mostly women.. We walked about three miles in the park, and another mile going there and back. We were with my terrific breast cancer support group from Columbia Presbyterian Hospital. I found that when I crossed the finish line, I was moved to tears by the fact that I was well enough to enjoy such a beautiful day and such a long walk.

In recent weeks I also had lots of tests – brain, MUGA (heart), bone, chest, and abdomen scans, some blood tests, and a bone marrow biopsy, and all the results were good.

I’ve found the loss of hair has not been a problem. I’ve had a good time buying and borrowing hats – one neighbor has been terrific at helping with this. The wigs are much more comfortable by now and I’m told they look great. And I’ve even spent an afternoon at Barney’s as part of their “Beauty for Life” program, getting a free facial and make-up lesson. I’ve even been wearing make-up, and thus surprising relatives and friends who think I’m looking better than ever.

My listserv on nonprofit cyber-accountability has been richer than ever in recent weeks, and I’ve written a short article for publication, had another long interview with a reporter – and a photographer is coming to take my picture tomorrow for an upcoming article in the Chronicle of Philanthropy!

We will also be having our usual annual vegetarian pot luck pre-Yom Kippur meal at our home on Friday, October 10 at 3:30. Please let me know if you’d like to join us (and we’ll settle what food you’ll bring). We’d love to have you!

More treatment plans

We just settled the date for my transplant last Friday. If there are no further delays, I’ll enter the hospital on Dec.1, immediately after Thanksgiving weekend. In the meantime, on Mon., Oct. 6, I’ll have an additional catheter inserted and start the pharesis – the harvesting of my stem cells.. I might need additional pharesis sessions, about five hours a day, on Oct. 7 and 8. Then I’ll have two more Taxol treatments on Thurs., Oct.16 and about Thurs., Nov. 6.

I’m looking forward to Yale parents’ weekend on Oct. 17-19 (though I’m prepared for the fact that I may be tired and ache-y from the Taxol), and to my Mother’s 89th birthday on Oct. 26.

I could have arranged to enter the hospital the week before Thanksgiving, but Ken and I realized we’d prefer to relax and enjoy Thanksgiving with the family, and especially enjoy Margie’s visit home from college. I didn’t like the idea that Margie would have to spend her first college Thanksgiving vacation attending to me in the hospital. If the hospital visit really is three weeks, with no complications, then I’ll be home in time to light Chanukah candles (Dec. 23) and to celebrate Sarah’s birthday (Dec. 30) – this will be soon after the kids’ winter vacations start.

The downside to this plan is that I may be pretty weak while the kids are home for winter vacation. But we have to play that by ear. At least I hope to be home with them.

As I’ve talked to women who’ve had the stem cell transplant, I’ve tried to get ideas for what could make this more comfortable. So far I’ve gotten a used answering machine and laptop computer to take to the hospital. It’s hard to know in advance whether or not I’ll want visitors. A friend who just had a bone marrow transplant managed to put a recording on her answering machine in the hospital every day letting people know how she was and whether she was in the mood for visitors. I hope to follow her example, at least for days when I’m too tired to answer the phone.

When I am in the hospital, I will be able to have an overnight companion. Women who have been through this had very different opinions about whether a nighttime companion was needed. Since I’m assuming that Ken should stay home with Sarah as often as possible, I’m keeping a list of women friends and relatives who might wish to spend a night in the hospital with me. If you would like be on the list please send an e-mail, and let me know which day(s) are best for you during the first three weeks of December. But we won’t finalize these plans until the last minute.

When I’m in the hospital and when I first get out, I will not be allowed to have fresh flowers or fruit, because they might carry germs.

The rest of the family

Sarah has missed a lot of school because of illness this fall, she continues to like school, and she continues to be very attentive to me. Yesterday we started her on antibiotics for a sinus infection, and she was back in school today.

Margie is having a fabulous time at Yale, though is still getting used to the pressure of weekly Directed Studies essays. We will love to see her for Yom Kippur and again at Yale for parents weekend.

Even though her own health is precarious, my mother continues to be an amazing support, and manages to keep me company at chemotherapy and pharesis appointments, so Ken can go to work. She helps me with paperwork, helps prepare the house for company and do the dishes, and showers love, optimism, and endless common sense on all of us. It gives her great satisfaction to still be able to do this – and we love it.

Ken continues to be the perfect companion for this journey, though it is often hard for him. He also spends a lot of time talking through Margie’s essay assignments with her. In honor of her paper on Homer’s Illiad, he wrote the following for Margie:

The Brontosaurus at Delphi

by Ken Klein

Could a brontosaurus use a thesaurus?
Compose a classic to end the Jurassic?
Lend distinction to total extinction?

He meditates on death and Eros,
Cosmic strings of ones and zeros.
Onward comet! Onward Cupid!
Metaphorically — don’t be stupid!
Lust for life and Paris burning,
Random chance and eras turning,
To the oracle — a misnomer,
Or so it’ll say in Chapman’s Homer.
A simile for fate as a bird —
If a dinosaur could but find the word.

[End of Ken’s opus]

Love,

Harriet

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Last Tuesday (9/2), I had my third and final dose of “CA,” cytoxan and adriamycin. As usual, I felt fine the first couple of days, but then Thursday through Sunday I’ve been queasy and tired (though still “out and about”). I’m optimistic that today should be the last day of the uneasy time, and the next two weeks should be fine. This has been the pattern through the past two cycles. Then, the next three cycles of Taxol should also go easily. It seems likely now that I won’t enter the hospital for high-dose chemotherapy until perhaps November 24, since my oncologist mentioned that he prefers to give the three cycles of Taxol every three weeks, not every two weeks.

I heard from my insurance company this week that they’ve approved my doctor’s plans for high dose chemotherapy and stem cell rescue. This is a very expensive procedure, and we were concerned that they might take a long time deciding, and that might mean I’d have to have extra cycles of chemotherapy just to “tread water” until the plans were approved. Instead, Oxford assigned me a nurse in the transplant program as “case manager,” to expedite all the red tape. It’s a relief that this is all approved, and wonderful that our insurance company has been so easy to deal with.
(more…)

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