Yizkor

My rabbi offered me the chance to lead the congregation as shlicha tzibur for the yizkor (memorial) service on Yom Kippur. I prepared as much as possible, learning new melodies, practicing every day.

But when I stood on the bima in front of hundreds of people, my nerves got the best of me. Even with two friends holding the Torah scrolls standing on either side of me, the new tunes I had learned went completely out of my head and I don't really know what I sang. The rabbi moved us on to El Maleh Rachamim for the six million and I thought she meant another prayer which I hadn't learned. The moment of panic was visible to everyone in the congregation. Somehow things ended smoothly with the congregation joining me in singing Psalm 23.

I was prepared to be very emotional, this being the first Yom Kippur since my father died and yizkor being such an oportuinity to remember those we love who have died. Instead I was so shaky with nerves that I didn't need the tissue clutched in my hand. Again I have learned that leading the congregation does not necessarily make for a resonant emotional experience the entire time for the leader.

Many people complimented me afterwards, so I guess I pulled it off. I hope the rabbi will give me another opportunity to lead this service and redeem myself.

Repentance and atonement

Tonight begins Yom Kippur, the holiest day in the Jewish calendar. We spend the day fasting and praying, asking God and one another for forgiveness. The fast includes abstaining from eating, drinking, washing, wearing leather and sexual intercourse. In short, we deny ourselves the pleasures of life in order to focus on our souls.

The prayerbook says, "On Rosh Hashanah it is written and on Yom Kippur it is sealed: who will live and who will die." This is especially meaningful when one has advanced cancer. I have written before that people with cancer believe we know what will kill us, we just don't know when. Every time I recite this prayer in synagogue, I am reminded that I too believe I know that my cancer will kill me, but not when.

So I hope to be written and sealed in the book of life for this coming year. I wish you all the same: g'mar chatimah tova (a good conclusion), an easy fast, and to be sealed in the book of life for a sweet year of health and prosperity.

PT has amazing idea

They physical therapist who specializes in manual lymphatic drainage measured my left arm yesterday and it is two centimeters (about one inch) larger in circumference than my right arm. That's a statistically significant amount and so I will have treatment, nine sessions authorized by the HMO so far

After giving me the gentle lymphatic massage, the PT came up with a great idea to help my insomnia caused by the bandaging: don't wrap at night. In her experience, several patients who have not wrapped at night did not see a change for the worse the next day. So last night I tried it. Took off the sleeve and glove and hand-washed them as usual, then just went to bed.

Of course I didn't take any ativan, and after taking it for twenty nights I had some rebound insomnia. (A nap this afternoon should fix any sleep deprivation.) But my arm seems fine this morning and I have hopes that this will work for me. As soon as I come off the ativan, sleeping without the bandaging will certainly improve the quality of my sleep!

20 hours wrapped -- limited improvement

I finally decided to spend an ultimate 20-22 hours bandaged to treat my lymphedema. When I do this I basically have to face a day/night with nothing to do since I can't type, cook, write, or even feed myself well while wrapped from my fingertips to my shoulder. Hell, I can't even bend my elbow!

Yesterday seemed the perfect day -- lunch with a friend, a visit with another friend, no meetings until the evening. Unfortunately by 10 PM I was completely frustrated with my inability to do ANYTHING, came home cranky from my evening meeting and took it out on Rik. Even taking a full mg of ativan didn't help me sleep. So now I am sleep-deprived, had to wake up early to go to the physical therapist, and don't even have much improvement to show for it. And since I gave up doing anything productive yesterday, today I have to catch up on the errands, ironing, etc. that I couldn't do while bandaged.

I hope the PT will have some good suggestions, or at least will be able to start treating me after taking measurements and have some availability for future appointments soon. I don't think I can give up too many more days of living my life in order to bandage, and I certainly don't want to have to wait more weeks to get additional PT appointments.

Lymphedema sucks.

Improvement in the hand?

I thought there was some improvement in my left hand. Spending a quiet day was supposed to help. Well, I went without the glove until 2 PM yesterday, but things still got puffy in the late afternoon. Then instead of just giving up and wrapping my arm, I put on the glove for a few hours.

I had to take a full 1 mg ativan tablet last night in order to sleep. I worry that I am temporarily hooked on ativan since I have been taking it as a sleep aid for several weeks now. Once the manual lymphatic drainage works and my arm gets back to normal, I am sure I will have rebound insomnia to deal with.

I guess I should take comfort in the fact the my hand was enough better that I could go without the glove for a few hours, but it's still very frustrating! This has been going on since September 4th and I am more than a little tired of it.

What we ate to ring in the new year

As many of you know, Jews always have special foods at our holidays and celebrations. One of my favorite and funniest stories to explain so many Jewish holidays goes like this: They tried to kill us. God saved us. Let's eat.

So here's what we ate on Friday night to celebrate the new year of 5770. You'll notice the sweet taste of many of these foods.

Wine and grape juice
Round challah with raisins
Apples dipped in honey
Gefilte fish
Chopped (chicken) liver
Fresh tomatoes from K's garden
Chicken Marbella (prepared with dried prunes and olives)
Farro with apples and onions
Couscous
Sauteed zucchini with pine nuts
Travados
Apple cake
Tea with honey

I imagine many Jewish cooks prepared Chicken Marbella this year in memory of Sheila Lukins, the co-author of The Silver Palate Cookbook who died recently.

The travados recipe was given to me by a Sephardic friend and I make them every year.

It was a wonderful evening filled with good friends, much laughter, and too much food.

The first Jewish service held in Germany during WWII

Rik sent me this article from today's New York Times about Max Fuchs, the soldier who helped lead the first Jewish service in Nazi Germany since Hitler's rise to power.

My dad was very proud of his army service during the war. He died last summer, so I can no longer ask if he was at Aachen on this momentous occasion. But you can watch a video made by the American Jewish Committee. Especially on this eve of Rosh Hashanah, it's worth watching.

“We bring you now a special broadcast of historic significance: The first Jewish religious service broadcast from Germany since the advent of Hitler.”

A sweet new year to all

The soup is cooking, the cakes are baked, and the chopped liver, gefilte fish and chicken are in the fridge for tonight's feast.

Rosh Hashanah means, literally, the "head of the year." Jews around the world celebrate the creation of the world at this season. One reason we celebrate the new year in the fall has to do with a play on words for Aleph b'Tishrei, the first of the month of Tishrei. It is a joyful time that begins the period of introspection called the Days of Awe, which culminate on Yom Kippur.

We will blow the shofar to awaken our souls, eat apples with honey in hopes for a sweet year, and cast off our sins into the water.

"On Rosh Hashanah it is written and on Yom Kippur it is sealed." May this be a year filled with joy and sweetness, health and happiness, peace and tranquility for all.

Happy 5770!

Yet another cancer loss - Mary Travers

It does seem that bad news comes in threes. I woke up this morning to read that Mary Travers, of Peter, Paul and Mary fame, had died of leukemia.

I once met Travers. I was visiting New York City in the early 1980s, eating crepes with friends at a small restaurant, when R whispered "Look! It's Mary Travers! I must get her autograph." Travers was very gracious about signing her autograph for my friend R and made several suggestions for places to take the out-of-town guest (me). Her recommendation? The Cloisters.

My camp summers were filled with singing songs PPM made famous, such as "Puff the Magic Dragon", "Leavin' on a Jet Plane", "If I Had a Hammer." I think much of my youth was defined by their music. I could never sing Travers's part -- her voice was so much lower than mine.

While Patrick Swayze is dancing in heaven, Mary Travers is no doubt making the music.

Still frustrated by lymphedema

All the holiday cooking has not given my poor hand a chance to come down in swelling. I have requested a referral for manual lymphatic drainage and my first appointment is Sept. 25. In the meantime I am so FRUSTRATED when wearing the glove and feeling as though my hand is encased in gigantic rubber band, or when bandaged and feeling unable to do anything. I even had to get a ride to rehearsal tonight because I don't feel safe driving.

I think I will take some ativan and see if better living through chemistry helps adjust my attitude....

Public losses to cancer

In recent weeks both Senator Ted Kennedy and Patrick Swayze died of complications related to their cancers. Swayze's death hit me harder. He was only 57. (I should live so long!) He was a dancer first and foremost. My self-image is that of a dancer, although clearly not of the same caliber.

This video came through my Facebook account and in it one can see the qualities that brought Swayze such acclaim. When he partners his wife, he is completely focused on her. In his solo, he appears to push himself harder. But when he returns to his partner, it's all about her again. The choreography isn't the most exciting, but his dancing is riveting.

I saw in an interview that Swayze wanted to be Gene Kelly, Fred Astaire, and other famous dancers all rolled up into one person. He certainly came closest to that goal of any other 21st century male dancer that I can think of.

If there is a heaven, Patrick Swaze will be dancing.

A compromise position

Here is the compromise position -- wear the glove during the day until the swelling is so uncomfortable that I must bandage. Then get into pajamas and wrap my arm. That's what I did at 5 PM and I'm sticking to it, so this is a short post.

Bandaging only helps so much

I wrapped my arm yesterday afternoon and prepared to do nothing for the rest of the day and night. But after spending an hour trying unsuccessfully to nap in the hammock, it became clear that I wasn't going to be comfortable no matter what I did. I had rubbed a burn (like a rope burn) just below my thumb where it meets the wrist. So I removed all the bandaging, re-rolled all the bandages, and found something to pad that spot. Then I re-bandaged.

By this time I was inordinately frustrated with everything. The noisy kids playing next door didn't help either. So I fell back onto my old stand-by whenever life gets me down: I went to bed. Yup, at 4 PM I gave up on trying to relax with a nap and by 6 PM I was in bed with the blankets up over my ears.

I have been doing this for a few years now. When life gets too frustrating to deal with, I simply take a "time out." I stayed in bed yesterday from 6 PM until about 4 AM when Bob the dog had to go out. Then I got back into bed and slept until about 7:30 AM. I woke up feeling more balanced and of course was thrilled to remove the bandaging.

Did it help? Not enough. I either have to live with the puffy hand and limit my activities (and remember, I'm left-handed), wear the glove and reduce my fine motor control, or bandage again and be unable to do practically anything. They are three bad choices and right now I can't decide which is the least terrible.

There may have to be ice cream in my future just to help me deal with this. Provided I can eat it with my right hand.

Lymphedema still bugging me

I may have overdone it yesterday, what with baking a cake, weeding in the garden, running errands and making a really good Shabbat dinner, because my hand is still puffy. I wore my glove all day yesterday (only took it off to carve the turkey), bandaged before going to bed last night, but got very little relief.

It's about 2:30 PM and I thought I'd wrap my arm and try to take a nap in the hammock. And there's always ativan in case the anxiety and discomfort that wrapping produces prevents me from relaxing.

Harmony Hill

There is a great article about Harmony Hill in today's Seattle Times. A few years ago I attended a free retreat for people living with cancer. We ate yummy vegetarian food, talked, did yoga, made arts and crafts, talked some more, practiced reflexology on each other, ate, talked and did more yoga. It was a powerful experience. I wish Rik had been there to share it with me. Other friends have gone and found the same wonderful experience as I did.

For those of you looking for a place to help you deal with your cancer, this is it.

Lymphedema flare up

I may have done too much cooking last week. Since Saturday my left hand has been puffy enough to warrant wearing my glove much of the past week. Yesterday I thought I'd take a break from the glove, and by nighttime my hand was so puffy that I couldn't grip anything, even the toothbrush handle. So I pulled out the trusty bandaging supplies and tried to remember how to wrap my hand and arm.

It's amazing how months can go by and I don't quite remember all the tricks the first time I bandage. Of course it all comes back in moments but that first second when I look at all the supplies and try to remember what goes first is a little disconcerting to experience after ten years of living with lymphedema.

I had hoped with the return of warmer weather I would be able to do more garden work but that may have contributed to this flare up. I can't fit a garden glove over my lymphedema glove and even if I somehow manage to squeeze my gloved hand into Rik's (larger) gloves, I have no fine motor control, needed even to pull weeds.

So today will be a lazy, do-nothing day, not by choice but because lymphedema prevents me from typing, holding a pen, doing anything that requires fine motor control. But I hope that one full day bandaged will bring my hand close enough to normal that I will be able to run errands and make Shabbat dinner on Friday.

Was it worth this price I have to pay for having cooked so many hours last week? Not sure. I enjoyed the cooking and the camaraderie a lot. If I'd thought about it, I might have chosen to wear my glove with a rubber glove over it while doing most of the repetitive work like chopping. I can't get my handmade, expensive lymphedema glove wet or dirty, but did wear it on Saturday for prepping the serving platters.

Evidently that was not enough and so I am paying the price anyway. At least I think I know why this flare up is happening.

New beginnings

Today is the first day of school. In our house, that usually means Rik stays up too late the night before, sweating over his curriculum, and then doesn't sleep so well. Of course, he also says that it's the best day of the year (and that the last day of school is the second best day of the year). If ever those two things change, that's when he will stop teaching.

Since we don't have children, I am grateful for Rik's profession as a reminder of the new beginnings that happen at this time of year. It's important to have opportunities to start fresh. Throughout the year, I find myself taking advantage of the first day of school, Rosh Hashanah, New Year's Day, Tu B'Shvat (Jewish Arbor Day) and even Pesach as milestones of new beginnings.

For me. new beginnings mean I've made it through another year. Cancer hasn't gotten the upper hand if I can enjoy a fresh start. Birthdays and anniversaries fall into this category too.

Once diagnosed with metastatic disease, I used to live from month to month, then from quarter to quarter. I remember the first time I made plans a year in advance. We were eating dinner at a Chinese restaurant on Christmas Day. (In case you've ever wondered, that's what Jews do on Christmas -- eat Chinese food and go to the movies.) We were a large party, the restaurant was crowded and the service couldn't keep up with the demand. I said to a friend, "Next year we should come for lunch instead of dinner." Much later I realized that I had made a plan for the following year.

Those of us who have cancer believe we know that cancer will kill us; just not when. Maybe this is why I am more conscious of new beginnings and annual milestones -- I am not certain if I will be around to celebrate them again, so they are even more precious to me.

More Megace, no problem

So far increasing the Megace dose back to 5 ml daily seems to have no ill effect. My appetite hasn't increased (the main side effect is weight gain through inducing hunger). My energy seems to be the same. When I first experienced the side effects of sleeplessness, intense hunger, nausea and vomiting, they appeared suddenly and dramatically about three weeks into taking this drug.

At least this time I know what to expect.

Cooking up a storm

I volunteered to cook for the synagogue's kiddush lunch this week and spent much of today making a truly delicious meal --

Four kinds of sushi (raw ahi tuna, albacore tuna, smoked salmon with cream cheese and tofu with vegetables)
Homemade pickled ginger
Teriyaki salmon
Sesame cold noodles
Asian ramen slaw

And the usual bagels, cream cheese, lox, hummus, herring. Brownies for dessert.

One of the local caterers evidently says that at Beth Shalom we eat more than at other synagogues. Based on the quantities of food made last night and today, I totally agree!

Probable change in treatment

I saw the oncologist yesterday and we both noted that my tumor markers have been climbing since May. That's an indicator that the Megace is not as effective as we'd hoped. So it looks as though I will probably face a change in treatment in the next month or so.

In June Dr. G had reduced the Megace dose from 5 ml to 2.5 ml after I complained of significant side effects. Now he wants me to return to the 5 ml daily dose until I start something new. Hopefully the side effects will not be as severe!

We are considering a clinical trial for dasatinib, a drug my cousin the oncologist had recommended I take. It's a phase II trial, determining which dose is most effective. Dr. G plans to talk with another oncologist at UW Medical Center who is running the trial locally to see what she has found about dasatinib's effectiveness. I don't know if I will end up on the once daily or twice daily dose or indeed if I will take it at all.

Back to wait and see....