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Archive for December, 1997

Merry Christmas or Happy Chanukah, or both, as your family prefers.

I am feeling fabulous.  Sarah was feeling a bit sad that we don’t celebrate
Christmas, so we’ve invited ourselves for hot chocolate and cookies to the
South Orange, New Jersey family home of my old friend, Marilyn Tindall
Glater.  I have to get ready to leave soon, so this installment will be quick.

On Saturday, Dec. 27, I’ll be saying a special blessing at our synagogue to
thank God for getting me through this life-threatening experience.  It’s
called “benching gomel.”  The service is at the West End Synagogue, West 69th
and Amsterdam, a former public library at the Southwest corner of the
intersection.  Don’t confuse it with Lincoln Square Synagogue, at the
Northwest corner.  The service starts at 10, and my special blessing will be
shortly after 11.

In honor of the occasion, I will also be chanting a few lines of the Torah
reading itself – about the Pharoah having a dream that the years of famine
are coming.  My friend Sol Mowshowitz has been my private teacher over
the years whenever I wanted to celebrate a special occasion by participating
in the synagogue.  Sol is making me a tape of my three lines of Torah, so I
can quickly learn to chant it.

After services the synagogue serves lunch to everyone who joins us.

I would love it if any of you who have been following this and are nearby
and available would join me for this service and lunch.

To celebrate my recovery, Ken has arranged to read from the prophets (the “Haftarah”) on
the following Saturday, January 3, at the same place, same time (the Haftarah
comes right after the Torah reading, so might start closer to 11:15 or 11:30
– but 11:00 would be completely safe).  (He would have read this week, but
another synagogue member had already prepared this week’s Haftarah).

So you are welcome to join us for services and lunch either week, or both.

We’ve been having feasts and guests each night for Chanukah, thanks to Nicky
Brown’s fabulous cooking and helping – and I’ve been out of the house for
some excursion every day.

My mouth is fully healed, I’m swallowing without difficulty, and I eat a
wider range of foods every day.  Last night I even ate a raw carrot.

Love and warm holiday wishes.

Harriet

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It’s 10:25 p.m. Monday night, and I’m very tired by now, but my nephew Richie and Ken told me I really ought to get back to my laptop and let you all know how I’m doing. (I had wanted to transfer all my hospital files to my beloved desktop first, but have run into difficulties moving the files).

The reason I haven’t written sooner is that I’ve been furniture shopping! It’s the truth. Today, after I got up at 8:30 and did all my own self-care – getting breakfast, taking a shower, donning wig and makeup (I’m beginning to look decent again, my complexion clearing and my swollen lips all healed), I went with Margie to see my doctor, have blood drawn, and rendezvouz with my mother and Naomi who were seeing another doctor. The doctor says my counts are down from 9.3 on Saturday to to 6.3 (normal is 4 or higher). He is not worried about this because I’m still in the normal range and the 9.5 was probably inflated by Neupogen, a white cell stimulating drug.

The next steps in treatment are four weeks of Interleuken 2, which involves daily self-injections and unlikely side effects (possibly a an itchy rash) – this four-week course of treatment may start January 5. Then six weeks of radiation therapy will probably begin early in February.

Then Margie and I cabbed it to Jennifer Convertibles, where very helpful Carlos helped me find and order a sleep-sofa. It’s exactly the same as the one we already have in the study which the family furniture store used to sell. Unlike our current sofa, however, this one is dressed in untorn fancy black fabric, in line with what Margie called “The Asian Motif”.

Margie went off to volunteer at the Hebrew Union College soup kitchen, and I took another cab to “Relax the Back,” a store on Broadway and 71st. I finally bought the extravagant and ergonomic desk chair I’ve been trying out for weeks. A lovely saleswoman named Vivian helped me adjust all the levers and cushions to fit my body perfectly, and even helped me get the chair home. I felt like all my family’s efforts to go out of our way for furniture customers came full circle — now I was the grateful recipient! Going back in time a couple of days, I had a wonderful last night in the hospital. Margie came home after finishing her exams, and she joined, Ken, Sarah, Naomi, Ed, my mother, my nephews Richie and Steven, Dr. Lee, and Tweety bird for a Shabbat celebration complete with singing, dancing, and several photo-ops. It was such a joy to bless the children that I burst into tears. Then, on Saturday, after hours of packing with Ken, feeling strong and very grateful, I left the hospital, and wept at the beauty of the lights on the Hudson River, then at the warmth of our living room, then at saying the shehechianu (“Thank you, God, for bringing me to this day”) at Sarah’s suggestion during Havdalah (the end of Shabbat ceremony).

This is Margie. I’ve been co-writing most of this message, but now I’m officially taking over, and switching the descriptions of Mom to the third person. Mom has no more energy after her heroic day. Mom apologizes that she has been so busy running around that she’s had no time to check her e-mail. So, if you have sent her a message, she should be getting to it soon. She says it’s a warm feeling to know that there are expressions of love and support floating around that she doesn’t even know about yet.

This is Harriet, getting in the last word. I ran out of energy a while ago, and was so grateful that Margie took over editing and finishing this. Sarah also ventured out this afternoon with friend Jennifer Schmukler to go ice skating by themselves by cab. What a proud mom I am.

Love,

Harriet

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More good news: my white blood count has gone up from .2 or .3 for 6 days, to 1.2 yesterday, to 2.5 this morning! 4-11 is the normal range.

I’m feeling much cheerier today – only occasional weeps of joy. My energy level swings wildly, and I’ve had a tiny bit of nausea and diarrhea. I had another session with Doug OBrien, my fabulous hynotherapist – he asked me what images would make me happy, and ended up taking me on an imaginary journey through Central Park and dangling my feet in the water from the dock at the bottom of the long flight of stairs at Aunt Sarah and Uncle Herman’s (and Mackie, Ruthie, and Shevie’s) home in Lake Hopatcong, New Jersey. I find these hypnosis tapes have a profound effect on me.

I’m definitely going home tomorrow. Today we managed to organize a party in my room to say thanks to all the hospital workers who treated us so royally – my cousin’s daughter, Hannah Schein, and my mother and Ken laid out a lovely spread, and people have been coming in one at a time to wish me well and say goodbye. Then at 7:30 or 8:00, Ken will arrive here with Margie (all done with exams, and feeling very good) and Sarah, and we’ll have Shabbat ceremonies in the room. I wish I could have invited all of you to join us, but that would have been too big a challenge to my immune system – so instead we’ll take pictures and post them on the Web.

Have you seen our first attempts at pictures? You start at the top of my Web page, and click on the two named pictures under “Pictures for Unbelieving Friends.” We’ll try to upgrade our technical skills for the next pictures – but it was fun to see what we could accomplish with a disposable camera and a scanner.

Love,

Harriet

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I have exactly eight minutes to get this news to you before my foot and hand reflexology appointment.

I just got the news that my white cells have started growing. For the past seven days, my white blood cell count has been .3 or .4. This morning’s white blood cell count is 1.2. We can expect them to continue to increase rapidlly (you can look at the chart of the regrowth of Peg’s immune system on the fascinating link from her Peg’s Recovery Page.

I have run out of time, but I really wanted to get you this news.

I’m weeping with joy (though my friend Bari Raik says that today’s weeping could well be withdrawal symptoms since I stopped all the morphine yesterday.)

I am also drinking a wide variety of liquids, eating soft foods, and doing all this with no pain medication and very little pain in my mouth. Swallowing is no longer a problem.

I’m very frustrated that I’ve been so busy with personal care (trying to eat), lots of visitors (who are wonderfully helpful, but make it hard to write these letters, etc.), etc., that I haven’t had time to write in this as I wish.

Thanks to you all for giving me the strentgh (I’m weeping again).

Love,

Harriet

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This is cheating a little, because it’s really now 12:35 a.m. on 12/18, and Ken is furious at me that I haven’t gotten to bed yet.

I’ve had another really good day. My white blood counts haven’t come up yet, but the timing of this is perfectly normal. I’m drinking liquids and eating soft foods (ice cream, jello), and the morphine drip has been turned off altogether, at my request. The doctors say my mouth has improved much faster than expected.

This week I’ve had two hypnosis sessions and two sessions with the acupressure therapist, and I’m scheduled for foot and hand reflexology tomorrow and another hypnosis session on Friday. I’m convinced that these treatments have contributed enormously to my sense of wellbeing and relaxation, and thus to my healing.

My life here seems like some kind of paradoxical pull between, as Ken argues, “thinking you need to prove that you are the best patient in the world,” and allowing myself all these luxurious complimentary therapies. Now I’ve really confused the issues. Ken worries when I stay up too late working on the computer – he agrees that participating in this complimentary care IS proving that I’m a patient who uses all available resources for healing. And in my defense, I tell Ken that no one “trying to be the perfect patient” would burst into tears as often as I do.

But I get so excited about this Web project that I do sometimes work on it when I’d be better off relaxing. If any of you would like a turn as ghost/guest-writer, please let me know.

I’d also love to collage and publish a selection from the huge number of terrific letters I’ve received in response to the updates. I’m concerned about whether I’d be violating your privacy if I quoted you If you are the least be concerned about being quoted in a future entry in my updates or Web site, please write to me. [Apologies in advance if that places unreasonable pressure on you – in any case, I’d try to be discreet in which replies I choose..]

Now for the fun. On Monday morning just as Susan Greene Merewitz was leaving, Carole Smokler came to visit and brought Klezmer music. Then Ken and Steve Schwartz arrived. Many of you had complained that no one would believe that we had danced with our Tweetie Bird IV pole, that I sent Steve Schwartz to get a disposable camera.

One of the nurses joined us, the clerk on the floor served as cameraman, and we re-dressed the IV pole for the occasion, danced a very brief Klezmer dance and a lindy with a cuddle, and took pictures. I’m sure you will understand that we are mainly inviting hospital workers and immediate family, to protect my very vulnerable immune system.

The next day my niece and nephew, Joyce and Richie, and their father Eddie (Naomi’s husband) came over, and Richie agreed to try to get the film developed. Richie got them developed, scanned them on a MacIntosh, and helped me figure out how to get them to my storage space at AOL. All this by phone. You can see the pictures from right at the top of the file:

http://members.aol.com/chapter3

On Friday night, when Ken brings Margie back from college, our family and a few close friends and doctors and nurses will celebrate Shabbat together, with Challah and grape juice and electric Shabbat candles. I will bless the children (Ken and I take turns from week to week). I burst into tears of joy each time I think of doing this. We are trying to arrange for higher-quality photos of this celebration – last week’s pictures were like a dry run.

Tonight my evening nurse, Joyce Waite, looked at my computer and said she really wanted to get a computer and take a course in how to use it. I promised I’d tell the whole world how wonderful she is if she’d use a relative’s computer to my Web site. Joyce, Anna, Luz, Rheesa, Kay-lin, Jennifer (and there are SOOO many others), and every cleaning worker and dietary aide, and all the doctors and residents have given us such loving and expert care. It is so reassuring when you have a tiny symptom and you immediately have an expert partner to help figure out what to do to heal it.

Love,

Harriet

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Tonight my “ghostwriter/guest editor” is Margie, my 18-year old daughter:

Love,Harriet

—-Forwarded Message(s)—-

Hi all. This is Harriet’s daughter Margie, with a special Yale edition of mom’s health update.

Mom is doing very well today. After a successful acupressure session, she was able to swallow cranberry juice, spiced apple cider, and herbal tea. Not a bad day’s work, eh? The acupressure woman complimented Mom on being so receptive to healing. Actually, Mom said in typical Grandma-esque modesty, “I don’t mean to brag, but…I think the doctors are enjoying me.” I told her not to worry, “I’m kvelling.” My roommate Vanessa piped in, “and I can’t get up!” Dad and I had to explain that this was a cultural allusion to the “I’ve fallen and I can’t get up” Life-Alert commercial.

Mom is still likely to be released from the hospital this weekend, though she had a slight fever and a very minor infection today. The doctors said it’s easy to treat, and that it shouldn’t hinder her recovery schedule.

She isn’t writing her message this evening because she is drowsy and mellow from morphine, and because I am happy to take the study break in my fury to prepare for my political philosophy exam tomorrow morning. (Wish me luck!)

Thank you for all of your support.

Love, Margie

—-End Forwarded Message(s)—-

Love,

Harriet

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From Harriet: I’m writing through a somewhat drowsy fog at the moment, but it has been a very pleasant day. Susan Greene Merewitz slept over, then Carole Smokler and Ken visited, the Steve Schwartz took over looking after me so that Ken could go to Staten Island and attend the wake of Mr. William Colbourne, the patriarch of our beloved Colbourne family. (Heather Colbourne is our housekeeper/member of the family, and Mrs. Iris Colbourne and the entire clan are our good friends).

From Ken: It’s now about 8PM. I’m back from Staten Island and we’re now being visited by 3/4’s of the Robbins family — Eddie (Harriet’s sister Naomi’s husband) and niece and nephew Joyce and Richie.

Maybe now is a good time to thank everyone for all the support I’ve been getting. About 22 years ago (actually 2 weeks after I met Harriet), my mother died from breast cancer. My father was her primary caregiver. Between my sister, brother and me, I don’t think we appreciated all my father was going through; we were too busy worrying about my mom. Anyway, it seems that this time around my extended family has been continually looking after me as well as Harriet. So, I’m greatly appreciative. All this help is making my job of looking after Harriet much easier.

I just reread the last paragraph and was thinking of all the people I meant when I wrote “extended family.” I started out thinking of my sister and brother and their families, and then Harriet’s mom, sister and brother and their families, and then our cousins, and friends — and I realized how extended is the group I think of as “family.”

Well, here’s today summary. Harriet’s big accomplishment was to actually swallow some ginger ale. (Anyone bothered by split infinitives should stifle the urge to comment.) She reports that, although swallowing was a bit painful, on balance the exhilaration of ginger ale outweighed the pain. This evening she even happily rinsed her mouth with cranberry juice (without swallowing).

Dr. Hesdorffer continues to be very pleased with how Harriet is doing. There still isn’t any sign of major infection. If she can just get by the next few days without any significant problems, then he thinks she should be able to go home by next weekend.

In fact, as I write this I’m feeling pretty upbeat. Margie is in the middle of taking her first final at Yale. (In my day we didn’t have finals from 7 to 10 Sunday evenings, but I didn’t go to an Ivy League school.) Sarah’s back home from spending a wonderful day decorating the Hickey family Christmas tree. The Giants have made the playoffs and the Jets are only a victory away. (Thank you Pittsburgh Steelers.) Now if I only knew how to post this message without help from Harriet.

Love,

Harriet

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