December 28, 2007

Day 10

I have been able to wear my sleeve and glove for a few hours each of the past two days. Now I am at about 18 hours bandaged (down from 23). However, last night I got so frustrated at how tightly I had wrapped it that after tossing and turning for several hours, at 3 AM I tore it all off in a tizzy. Then I did finally manage to fall asleep, as did Rik. I think there will be a nap in our future this afternoon.

And for those who were curious, I do still remember how to use chopsticks with my right (non-dominant) hand. You should try it some time!

December 25, 2007

One week of bandaging

Finally there is some improvement in my left hand. I can see my knuckles again! My wrist and forearm are still thickened, so clearly I'm not done bandaging just yet.

However, friends are coming over this afternoon, so I plan to wear my sleeve and glove this morning to have full use of my hand while baking a cake and straightening up the house. Then I will bandage for the rest of the day and overnight, in time to go our for Chinese food. I wonder if I remember how to use chopsticks with my right hand? (I learned in Japan, when I had to bandage for a couple of days during our trip.)

December 23, 2007

Bandaging day 6

Still no real change. I had decided to stay home all day Saturday and have a pity party but was rescued by my friend G. 

We went to the Museum of Glass in Tacoma and later met up with another friend for a ladies' night out at Smash in Wallingford. I had a pomegranate martini and we shared a number of appetizers (potato cakes, green salad with dried cherries, flatbread with feta and olive spread), split an order of artichoke ravioli with pink vodka sauce, and finished with a cheese plate (Port Salut, Valdeon bleu and Manchego). The Valdeon was particularly amazing when drizzled with honey.

My hand is not improved by my attitude definitely has!

December 21, 2007

Bandaging day 4

I saw the physical therapist again today and she had some new padding ideas. Hopefully the hand will be a little less bulky, permitting me to do a little more. So far no change....I still have a lot of swelling in my hand and wrist. 

December 20, 2007

Bandaging day 2

I tore off the bandages at 5:30 AM after being wrapped for about 17 hours. My arm and hand swelling had decreased dramatically. Then I went back to sleep. But by the time I got out of bed three hours later, the swelling had returned.

The bandaging clearly works, especially when done in combination with the manual lymphatic drainage. But I think it will take more than a couple of days of wrapping to get back to normal.

December 19, 2007

Lymphedema update

I saw the physical therapist today for lymphedema control. It took calling three different providers until I could find someone who had availability now instead of in a few months! Can you imagine waiting months to be able to use your hand normally?

The therapist said that I have edema in the chest, along the ribs and across the back. She did some manual lymphatic drainage and I scheduled five more appointments. Hopefully that and the bandaging 23 hours a day will bring this flare up under control.

In the meantime I will use my right hand more and hopefully not overuse it to the point of developing carpal tunnel syndrome. I'll make lots of mistake when typing. I'll try not to cut myself when using a knife. And I'll be wearing Rik's shirts -- only men's shirts have sleeves large enough to cover the wrappings!

December 16, 2007

Lymphedema rears it's ugly head



For no clear reason I woke up this morning with pain and swelling in my left hand. I have lymphedema on my left side, a hold-over from the axial node dissection with my lumpectomy that removed several lymph nodes from under my arm.

Usually I can predict when it will flare up -- taking an airplane ride, overuse of some kind, an insect bite -- but I can't figure out what might have triggered it today. So I am wearing my compression glove as well as my sleeve. Because I am left-handed, this limits my flexibility, not to mention my typing accuracy and ability to use a computer mouse!

December 12, 2007

Chocolate truffles

Today I made 95 chocolate truffles with a friend. She had tasted them at a party and wanted to learn how, so we experimented together. There was a haze of chocolate over the kitchen by the time we finished.

We made halvah truffles, Amaretto rolled in hazelnuts, chocolate caramel with sea salt, Lapsang Souchong tea, vanilla bean and Kahlua with cinnamon. Dunava rehearsed here and tasted them all. The biggest hits were the halvah and caramel.

If you try any of these, be sure to use the best-tasting chocolate you can find. The truffle flavor depends almost exclusively on the chocolate. We used Ghirardelli bittersweet chocolate.

We made the more generic truffles from a basic ganache:

Heat 1/4 cup whipping cream with 1 tablespoon liqueur until gently simmering. For vanilla bean, heat bean in cream, remove and scrape seeds into cream. For tea, heat loose tea in cream, then strain out tea leaves.

Melt 8 ounces bittersweet chocolate and stir into flavored cream. Transfer to a bowl and chill until set and thickened, about 2 hours.

Scoop by small teaspoonful, form into balls and roll in cocoa or finely chopped nuts and chill. To cover in chocolate, melt a few ounces of finest quality chocolate. Working over a baking sheet lined with waxed paper, dip each truffle into chocolate. Chill on lined baking sheet. Transfer to small paper cups to serve. Keeps about 1 week in the refrigerator and 1 month in the freezer.

I found the halva truffle recipe online:
Crush 4 ounces of halvah into powder and heat with 1/4 cup of heavy cream. Stir in 4 ounces of melted bittersweet chocolate, one teaspoon of vanilla and a tablespoon of dark rum. Chill the mixture for an hour, roll into balls, and chill for at least two hours, and then coat with melted chocolate as above.

For chocolate caramel truffles, I adapted a recipe from Bon Appetit Magazine:
3/4 cups packed golden brown sugar
3 tablespoons butter
3 tablespoons light corn syrup
1 tablespoon water
1/4 teaspoon salt
3 tablespoons whipping cream
3 ounces melted bittersweet chocolate

Combine brown sugar, butter, corn syrup, water and salt in heavy medium saucepan. Stir over medium eat until sugar dissolves. Bring mixture to boil, then boil 2 minutes without stirring (mixture will bubble up and thicken slightly). Remove pan form heat. Add cream (mixture will bubble vigorously) and stir until smooth. Add melted chocolate and stir until completely smooth. Line an 8x8 inch pan with foil and grease. Pour caramel into pan and set 3 hours until firm. Turn out onto a cutting board and cut into squares. Cover with melted bittersweet chocolate and sprinkle lightly with sea salt (an idea I stole from Fran's Chocolates. Yum!

December 11, 2007

Last night of Chanukah


Tonight is the eighth night of Chanukah. My 10 year old nephew sent us this link to Adam Sandler singing his "Chanukah Song". I think you'll like it!

A little pain

I've awakened several times recently in the middle of the night with pain. Not a lot of pain, but the kind that makes you restless, then wakes you up. It takes me a few moments to figure out why I am awake. Then my brain kicks on and I sit up, grab my handy glass of water, and take some pain meds.

A while ago I got smarter about things like this, and I started taking a glass of water with me when I went to bed. That way I don't have to get up in the cold and dark... unless of course the dog wants to go out, which is what happened at 3:37 this morning. An unusual occurrence, true, but meant that I didn't get a full night's sleep again.

December 09, 2007

My latke recipe



For those of you who have not experienced a latke, here's how I adapted my dad's recipe.

To serve 2 hungry people:
4 potatoes, peeled
1 onion, peeled
1 egg
salt and pepper
Matza meal
Oil for frying

Grate the potatoes using the small holes on a box grater. OR use the grater disc on a food processor and then pulse the grated potatoes for a few seconds using the "S" blade. Working over a bowl, squeeze all the water from the potatoes. Pour off the liquid that accumulates and scrape the potato starch that remains into the grated potatoes.

Grate the onion or chop it finely in the food processor (pulse for a few seconds using the "S" blade). Add to the squeezed potatoes. Mix in 1 beaten egg and season to taste with salt and pepper. Add a little matza meal or flour to thicken the batter.

Heat about 1/2 inch of canola or olive oil in a skillet (I use both mixed together). Drop large spoonfuls of latke batter into the hot oil and fry until golden brown, about 3-4 minutes. Flip and fry the second side. Add more oil as needed.

Serve with applesauce and sour cream -- yummy! Can be doubled, tripled etc. to feed a crowd.

(If you want to fry latkes in advance and enjoy visiting with your friends instead of standing over the frying pan during the party, my sister recommends freezing cooked latkes on a metal baking sheet. Reheat in a 350 degree oven for 20 minutes until heated through. Be careful not to burn the latkes. This works better than refrigerating because freezing dehydrates the cooked food slightly. The latkes retain enough oil to crisp up in the hot oven and the cook gets to enjoy the party!)

Oy Chanukah Oy Chanukah a yontif a freydl



Tonight is the sixth night of Chanukah. We've had a whirlwind holiday with LOTS of fried potatoes. On Chanukah it's traditional to eat foods fried in oil to recall the miracle of the single cruse of oil that lasted for eight days.

On Tuesday (first night) it was just Rik and I so of course we had to eat latkes. On Wednesday I had choir rehearsal. On Thursday we both had evening meetings. On Friday night we went to friends for Shabbat dinner and I ended up frying latkes for 30 people. On Saturday night we went to other friends for soup and three different kinds of latkes: traditional potato, spinach (looked like green construction paper but tasted great!) and sweet cherry with cheese.

Tonight we had a close circle of friends over for soup, salad and yes, more latkes! I feel like I've been frying for days, and does our house smell from oil.

December 05, 2007

Rain has finally gone away

On Monday we woke up to a flood in the basement. Ankle-deep water and more flowing in through a hole (!) in the foundation. Rik tried to remove some water in the early morning. You should have seen me with my jeans rolled up past my knees, barefoot in my rain boots. Of course my feet were immediately soaked through. I pumped what I could but had to give up soon. I really didn't feel safe using electric equipment while standing in 4 inches of water! We finally learned that we could put the wet vac outside, use an extension cord to get power form upstairs, and run a longer hose into the water to get rid of more water faster.

Later in the afternoon one neighbor loaned us a larger wet vac and another neighbor came over to help unclog the floor drain. He even helped relight the pilot light on the hot water heater. Another neighbor told me that they had a similar experience a few years ago and would recommend someone to seal the basement. We live on a great block and I know what our summer home improvement project is going to be.

It took hours but the basement is finally drying. Thankfully it's not finished, just storage and appliances, furnace etc. on a concrete floor. Everything is up on risers (except the hot water tank), so clearly this has happened before in the house's 86 year history.

In the middle of dealing with the flood, I found myself scratching. I'd woken up with some bites. I don't know if they were fleas or from a spider hiding in the extra blanket we pulled out this weekend. So I spent the afternoon doing multiple loads of laundry at a friend's home. (Couldn't use the washer and dryer in the basement, not with a flood.) In case we really did have a flea issue, I had to wash all the blankets, sheets, pillowcases, comforter covers, pajamas, AND the dog beds in hot water. Plus flea-treat the dog again.

Seattle got 2 inches of snow on Saturday and 4 inches of rain on Monday, an amazingly large amount in a very short period. No wonder the ground was saturated.

Last night Rik and I both realized that compared to the flooding that destroyed people's homes, what we experienced was just a (relatively easily dealt with) inconvenience.

December 03, 2007

Raising more money

Yesterday was the culminating event in fundraising for my synagogue. Following the model proposed by Benevon (used to be called Raising More Money), a cycle of introduction to the organization and cultivation of relationships culminates in a one-hour free event. There's no obligation to give, no minimum and no maximum. If we do our job right, you'll want to give.

The program is simple:
Opening emotional hook (music from 2 young men who grew up in the community)
Short time to eat and socialize
Visionary speech by the rabbi
7 minute video highlighting three families
Personal testimony from a couple who've been around from the beginning
Asking for money

We ask for a multiple-year pledge to the general operating fund. We ask for $1000, $5000 and $10,000 a year for 5 years -- or you can give any amount for any length of time. And the whole thing is done in one hour!

This year's brunch had the most pre-registrations (227 out of a congregation of only 400 families). Three of the 24 tables were made up entirely of new members. All of the board members who were in town attended. And the snowfall on Saturday night did not seem to deter most people from attending.

210 people were there and pledged $45,000 for the current fiscal year. Over $23,000 was pledged for future years as well. Our congregation is so generous!

By the time we finished counting the money and sending out the good news, it was almost 5 PM. A long day, but a very worthwhile one!

November 23, 2007

Happy Thanksgiving one and all

Rik and I enjoyed a mostly quiet but very sunny and cold Thanksgiving Day. After the traditional watching of the Macy's Parade on TV (I always wanted to be a Rockette), I did a little cooking to bring to our friends G & D. We were at their home from about 3:30 in the afternoon until 9:45 at night. That's got to be a marathon festival meal....

Over dinner G noted that everything we were eating was made by hand from scratch. Now that's something to be thankful for!

(* indicates what I brought or made)

Butternut squash and green apple soup with fried sage garnish
Roast turkey with mushroom bread stuffing and gravy (* I made the gravy from G's scratch stock and turkey pan drippings)
Mashed potatoes
Green bean and mushroom casserole with fried onion topping *
Hazelnut-glazed carrots *
Cranberry chutney * and cranberry relish
Apple pie
Pecan pie
Pumpkin pie
Freshly whipped cream
Chocolate bark with walnuts and raisins *

Hope your Thanksgiving holiday was joyous with the warmth of family, friends, or like us, with friends who are family.

November 15, 2007

Happy birthday to me!




Today I am 48 years old. When I was diagnosed with metastatic disease in August of 2002 at age 42, I wasn't sure I would live even one more year. How thankful I am to be here more than five years later, living a (relatively) good life, with stable disease that responds to treatment.

Last night my choir was here for rehearsal and we celebrated two birthdays -- mine and R's, who turns 28 tomorrow. She and I are exactly 20 years and one day apart in age. Before we got down to the singing, we ate from three of my personal food groups:

CHOCOLATE: mini chocolate cakes with molten centers
CHAMPAGNE: Cristallino Cava Rose Brut
WHIPPED CREAM; unsweetened with just a hint of vanilla

(I ate from my fourth food group, POTATO CHIPS, yesterday and didn't share them with anyone, not even Rik. And I even left evidence of my binge in the garbage for him to find.)

My birthday wish is for my cancer continue to be slow-growing and respond well to treatment. And may I live long enough to benefit from a cure for breast cancer!

November 14, 2007

3 month check up

I saw Dr. G today for my three month check up and all appears to be stable. I have been taking tamoxifen since January 2006 with only a few side effects (weight gain and hot flashes). I have the usual aches and pains from bone metastases, but nothing new to report. So I will see him again in another three months.

Dr. G would recommend for women with a family history of breast cancer, that if a woman's mammogram report indicated she had fibro-globular densities, then she should also have a breast MRI.

What does fibro-globular densities mean? That the mammogram view was "cloudy, and you can't see through the clouds without a better telescope." Hence his suggestion for breast MRI.

November 07, 2007

Another death from breast cancer

Last March I traveled to Las Vegas for a retreat for women with metastatic disease sponsored by the Young Survival Coalition. We'vestayed in touch with each other over the ensuing months via an email group, celebrating and commiserating as needed. On Monday I received an email that one of the women had died.

D was in her early 40s with two young sons. Her only desire was to live to dance at her children's weddings...

November 02, 2007

Toasting and Roasting Mom

This is what my sister and I shared about our mother on her 80th birthday:

• When I was about 6 years old, we went downtown to the garment district on a hot August day to try on winter coats because Aunt Ruthie had a connection for a great deal.

• Mom knit yards of kelly green yarn into the most beautiful dress, poncho and beret for Susan to model in her 4th grade fashion show.

• She volunteered to be Cookie Mom for our Girl Scout troupe, and made us line up case after case, sorted by type of cookie, in the empty living room.

• Mom's eyes gleamed when she honked for us to come down to the garage (meaning “Come get the groceries”) and surprised us with Dunky the cocker spaniel.

• Mom ordered a special box for me of supplies and booklets that explained how a girl grew up to become a woman. She wanted me to be knowledgeable but she didn’t quite know how to explain the birds and the bees. When Susan grew up a couple of years later, and Mom asked her if she had any questions, she said "I'll ask Jill!"

• She struggled to get into and out of her wedding dress with us both in anticipation of their 25th anniversary party.

• Mom took me to lunch just before I went to Israel at age 17 and told me that whatever I decided to do with my life, I should pursue my dreams.

• When we were little girls, Susan and I used to play dress-up in Mom’s wedding dress. Mom mailed it to me to see if it fit. It was stuffed into the original cardboard box, with great-great-Aunt Dora’s diamond rings folded inside, and insured for $100 because she didn’t want to call attention to it in the mail.

• When my parents moved into their new apartment after leaving their house in Cincinnati, Mom said she felt like a new bride.

• Susan came home one night when Mom was babysitting, and found her young kids running around, with Bubbie nowhere to be found. They were playing hide and seek, and Mom was hiding under the dining room table!

Here’s to Mom’s resiliance and determination!

Celebrating Mom's 80th birthday

My sister and I planned a wonderful luncheon to celebrate our mother's 80th birthday. Twenty-two of her friends joined us. My niece Dana even took her vocabulary test first thing in the morning so she could leave school early to attend!

We went to a lovely Italian restaurant where we enjoyed Caesar salad (but sadly no anchovies), fish served with a polenta cake and asparagus spears, and tiramisu. There were entree choices, but somehow almost everyone ordered the same dishes.

Susan had also bought bottles of prosecca, the Italian sparkling wine, so we could both toast and roast our mom. Then Mom made a short speech, telling everyone how she knew them. There were friends from her mah jongg and canasta games, from her volunteer work at the temple, and best of all for me, some of her "oldest" girlfriends.

I sat with Z and F, who were my mom's high school girlfriends. They've never been out of touch, even after so many years. Her good friend, the other Z, who my mom knew from our life in Cincinnati, and who now lives nearby, joined us as well.

Z's and F's husbands drove down as well and visited with my dad. They had all been newlyweds together. After the luncheon, we looked at footage they had shot on New Year's Eve 1950. It was a joy to see my parents and these friends I have known all my life as young married couples.

October 31, 2007

October 19, 2007

Popular culture and a breast cancer death

I read the comics every day and one of the strips I follow is called Funky Winkerbean. There's been a recurrent theme about a character with breast cancer and this month she died.

In 1999, Lisa Moore, one of Funky’s friends and a main character, discovered she had breast cancer. Batiuk, unsure about dealing with such a serious subject on the funny pages, decided to go ahead with the story line. He approached the topic with the idea that mixing humor with serious and real themes heightens the reader’s interest. Lisa and husband Les faced the same physical, psychological, and social issues as anyone else dealing with the disease.

After a mastectomy and chemotherapy, Lisa was cancer free. She finished her law degree, opened a practice, and had a baby daughter, Summer. Then, in the spring of 2006, the cancer returned and metastasized. Lisa’s Story: The Other Shoe is a collection of both the 1999 comic strips on Lisa’s initial battle with cancer and the current series examining her struggle with the disease and its outcome. Additionally, it contains resource material on breast cancer, including early detection, information sources, support systems, and health care.

Artist Tom Batiuk spent several years as a middle school art teacher before creating the comic strip Funky Winkerbean in 1972. Originally a “gag-a-day” comic strip that portrayed life in high school, Funky has evolved into a mature series of real-life stories examining such social issues as teen dating abuse, teen pregnancy, teen suicide, violence in schools, the war in the Middle East, alcoholism, divorce, and cancer.

Tom Batiuk is a graduate of Kent State University. His Funky Winkerbean and Crankshaft comic strips are carried in over 700 newspapers throughout the U.S. In 2006, he was honored by the American Cancer Society and presented its Cancer Care Hall of Fame Award for his sympathetic work in highlighting the experiences of those with cancer.

Looking for a new cancer charity? Check out Lisa's Legacy Fund for Cancer Research and Education.

October 18, 2007

Boycotting October


I wore my "Boycott October" button the other day, a gift from my friend Jeanne, the Assertive Cancer Patient. Several people asked me about it. "What's wrong with buying pink merchandise?" they asked. "Doesn't that support breast cancer awareness?" To which I replied, only if you know how much money is going to the cause and whether or not there is a ceiling on the amount of money raised.

Why can't Yoplait yogurt just give half a million dollars every year to the Komen Foundation? Why do we have to lick the lids clean, save them, and mail them in?

Really, I'd prefer if people made a donation to an organiztion that supports women with breast cancer or research into a cure rather than buy more pink ribbon crap.

October 12, 2007

Another cancer dream

Early this morning I dreamed a new cancer dream. I'm in a car, and we're going backwards (in reverse) very quickly. I'm not driving, but I'm sitting in the front passenger seat. I say to the driver (with increasing agitation), "Really, you're driving too fast. I wish you'd slow down. This is my car, and I think you're going too fast." Then I woke up.

To me this is clearly a cancer dream. The car is me, and because I feel out of control, I'm sitting in the passenger seat. Cancer is driving, recklessly and fast.

I woke up very stressed and tense, clenching my jaw. And there's nothing even going wrong just now!

October 09, 2007

Happy birthday Mom!

My mother turned 80 today. She gets a lot of comments from people about how she doesn't look her age. I tell her she should borrow Gloria Steinem's line and say "This is what 80 looks like!"

I certainly hope that I get to enjoy both my parent's length of years.

Think before you pink

It's October, and that means Breast Cancer Awareness Month. For me, and maybe for you, every month is breast cancer awareness month, but I guess other people need an annual reminder.

Last year I ranted about buying pink merchandise as an effort to fight breast cancer. Remember Breast Cancer Barbie? Pink Campbell's soup?

This year I still want you to think before you pink.

I agree with the critical questions that Breast Cancer Action recommends you ask some before opening your wallet for pink-ribbon campaigns:

How much money from your purchase actually goes to the cause?

What is the maximum amount that will be donated?

How much money was spent marketing the product?

How are the funds being raised?

To what breast cancer organization does the money go, and what types of programs does it support?

What is the company doing to assure that its products are not contributing to the breast cancer epidemic?

For instance:
Yoplait’s fall campaign, Save Lids to Save Lives, continues to urge consumers to buy pink-lidded cups of Yoplait yogurt. For each pink lid mailed back to the company by December 31, Yoplait donates ten cents to Susan G. Komen for the Cure, up to $1.5 million. Sadly, a woman would have to eat three containers of Yoplait every day during the four-month campaign to raise $36 for the cause–and the yogurt is made from cows treated with rBGH (recombinant bovine growth hormone). Recent studies show that rBGH dairy products may be linked with an increased risk of breast, colon, and prostate cancer.

As the Breast Cancer Action website says, "If shopping could cure breast cancer it would be cured by now." So don't buy pink stuff to help me and women like me. Instead, make a donation straight to an organization that supports breast cancer research, early detection, or helps women living with breast cancer.

Read more about which charities give the most money to prevent and cure breast cancer at Charity Navigator.

October 02, 2007

Matchmaking in the P-I

My friend Jeanne, the Assertive Cancer Patient, who is looking for a Canadian sweetie with an eye to matrimony, was interviewed by the Seattle Post-Intelligencer. Her story was on yesterday's front page above the fold. For those of you who don't know journalism, an appearance above the fold indicates the importance the P-I places on that story.

Click to read Wanted: Husband with Canadian health care.

"Sometimes pain is just pain"

I got squeezed in to see my onc late yesterday afternoon and it turns out the xray was good -- no evidence of anything new. As he said, "sometimes pain is just pain." But I did the right thing in reporting it and getting it checked out.

Maybe it was the change of seasons? Arthritis? Overuse? Sleeping on that side and having the rod in my hip rub against tissue? Either way, I haven't had that pain since the end of last week.

September 29, 2007

The annual sukkah party


Today was the Shabbat of Sukkot and the 13th anniversary of the day Rik and I met. Since we married in 1995, we have held a sukkah party every year to share our anniversary.

[What's a sukkah, you ask? A sukkah is a temporary shanty Jews built in ancient times when living in the fields while bringing in the crops at harvest time. For more than two thousand years, during the festival of Sukkot (Tabernacles), Jews have built these shacks. The sukkah is made of all natural materials, and the roof is covered with just enough to allow one to see the stars at night. We decorate our sukkah with flowers, fruit, cards, toys and other tchatchkes.]

For our bar/bat mitzvah anniversary we borrowed a popular bar mitzvah celebration idea and made a collage of all the photos taken in the sukkah over the years. It was such fun to see how our friends' kids have grown over the years and how everyone's hair has gotten shorter or longer (or disappeared altogether). Today was cold and a little rainy, but about 40 people showed up and many of us crowded into the sukkah to take this year's photograph.

We snacked on a delicious buffet of (mostly) home-made delicacies: baba ganouj (smoky eggplant dip), white bean pate, ajvar (roasted read pepper puree) and various breads and crackers; potato-cheese and mushroom borekas; double cream brie, goat cheese, Bulgarian feta and Dubliner cheddar; fresh figs stuffed with goat cheese and drizzled with peppered honey; tomatoes from the garden; and of course lots of dessert, including chocolate-zucchini cake, espresso shortbread cookies, and honey cookies.

Everyone brought an item to hang in the sukkah, and we now have added to our collection more plastic fake fruit, a glass-shaped piece of "candy" and a huge paper apple that may not survive the night. This is the real meaning of the sukkah -- a reminder of the temporary nature of life.

September 26, 2007

A little pain

I've had some new pain in my right hip, the kind that wakes you up in the middle of the night. At 3 AM I find myself restlessly trying to get comfortable in bed, when the figurative light bulb goes off over my head -- I'm in pain! That's why I'm twitching! So I take some pain meds and am usually able to get back to sleep.

Four such occasions in the last week might mean disease progression, so I called my oncologist. I will probably have some tests, maybe a bone scan or PET scan, and then we will talk about treatment options.

Of course, the first thing that comes to mind is worry and fear. How far has it progressed? What new drug will I have to take? Will I be able to have radiation a third time in the same place? All of these questions are much scarier when I'm awake in the middle of the night.

In the meantime, the pain meds are my friends....

Cancer travel

On Monday my friend D came to town. She was just accepted to a phase III clinical trial for a breast cancer vaccine at the University if Washington. That means she'll be travelling from New York to Seattle, at her own expense, once a month for the next seven months.

D and I are online buddies. We met last March, at a retreat for young women with metastatic breast cancer, and have corresponded with the participants ever since. But as soon as she knew she would be in Seattle, she got in touch so we could get together face-to-face.

We spent a lovely afternoon and evening walking the dog, cooking and enjoying a tasty dinner, drinking wine and talking. It was a pleasure to be able to talk about real issues with someone who gets it -- pain management, death and dying, leaving a legacy.

I hope D and I will see each other every month when she comes to Seattle for the trial. The world can be very small when you have something big like cancer in common!

September 18, 2007

Choose life

It's the Jewish season of reflection and renewal. On Rosh Hashanah it is written, and on Yom Kippur it is sealed, who shall live and who shall die? And so I quote Hadassah Medical Organization's Dr. Avi Rivkind: "My grandfather taught me that when we're wavering between olum hamet and olum hahayim -- between death and life -- we choose life!"

September 13, 2007

Shana tova!


Today the world is born. It's Rosh Hashanah, the Jewish new year. May this new year of 5768 bring us all good health, joy in life and many blessings.

For a very funny new year's wish, especially if you speak Yiddish, click here.

September 10, 2007

Looking for a match

My friend Jeanne, the Assertive Cancer Patient, who also has metastatic breast cancer, has had it with US health coverage. She's decided to look for a Canadian sweetie with an eye to matrimony.

What started out as a political take on the state of US health care has snowballed into actual connections with (hopefully) eligible men, participation in several radio talk shows, and an interview on Seattle's KING 5 news. Evidently many Canadians are concerned that a US citizen might want to move in to take advantage of Canada's universal health care system.

You can read about Jeanne's experience or watch a video clip of her KING 5 interview.

To listen to Jeanne's interview on Canadian talk radio (the Christy Clark Show on CKNW), click here, scroll down to Wednesday, September 5, 2007, and click on Hour 3. Jeanne's story appears about halfway through the hour.

September 03, 2007

Harvest time


The sun has finally been shining in Seattle. Today I harvested a couple of pounds of ripe tomatoes and a big colander of grapes.

Nothing says summer to me like perfectly ripe tomatoes straight from the vine. These came from plants I started from seed in the early spring. Unfortunately we had a cool summer, so although the plants were tall and strong, with a lot of fruit, it's taken until September to ripen. I foresee insalata caprese in my future: fresh mozzarella cheese and basil leaves over sliced tomatoes, dressed with a scattering of sea salt and some fruity olive oil.

I've been tasting the grapes daily to ascertain the peak of sweetness. The colander yielded 6 cups of grape juice. It tastes both sweet and tart, the perfect metaphor for life. I will refrigerate the grape juice to have for kiddush during the holidays later this month.

The plums are already stewing in the basement to become homemade "hooch." The strawberries, raspberries, blueberries and chester berries were all delicious too!

August 20, 2007

Five years



On August 20, 2007, I celebrated five years of dancing with metastatic breast cancer.

How does one celebrate such an event? After all, it's not like having cancer is a picnic. Treatments, aches that may or may not mean anything, appointments with doctors, diagnostic tests, and lots of meds add up to a strenuous regimen. Sometimes when I meet people for the first time, I answer the question "What do you do?" with "I'm in health care management." (I just don't say it's my own health I'm managing.)

This is how I celebrated: I invited my friends and family to eat dinner, drink a martini, dance a horo and indulge in lots of vitamin CH -- chocolate. More than 60 people gathered to party together, from all the different parts of my life. My yoga instructor and one of my doctors. Radost dancers and synagogue members. My sister and niece from New Jersey. Members of my choir Dunava and Rik's colleagues. It was a glorious mishmash of people.

The crowning moments were being serenaded by Dunava and dancing to tunes from Orkestar RTW. As dusk fell, the band played from the deck. We danced on the grass below in the dark, surrounded by strings of twinkling lights.

This is what Dunava sang to me:
We wish you a happy anniversary.
A joyous and celebrated anniversary.
To our dear Jill --
May she have a long, long life!

August 15, 2007

Bone scan results

Got the results of my recent bone scan on Tuesday and all is good -- no new areas of "involvement." So feeling well actually correlates with being well. It's a concept many take for granted, but here in cancer-land, no can do.

I say all the time, "By me, no news is good news."

August 11, 2007

Semi-annual bone scan

On Wednesday I had my semi-annual bone scan. This test lights up any areas of bone activity, such as healing or healed fractures or bone regrowth. It might reveal any new areas of concern for metastases. So it's a pretty useful exam for me.

I checked in and had the chemo nurses access my port-o-cath (I'd rather use that than get a needle stick!). Went down to the nuclear medicine area, where a tech injected a radioactive dye through the port. Then back to the chemo nurses to have the port de-accessed.

There is a 2 hour window of time between when they inject the dye and when I have the exam. I have to drink 24 ounces of water to pee out any remaining dye. I usually go home and relax, have lunch, etc. Then back to the hospital for the scan.

I lie on my back with my arms strapped to my sides on a narrow platform (why are all the platforms narrow?) and go into a scanning tube. Since I wear an eye mask and can listen to tunes through my iPod, it doesn't bother me so much. MRI's are much worse for some reason.

This tech recognized me and said, "This must be about your tenth bone scan!" I told her I hoped to have more scans for many years yet.

I get the results from my oncologist on Tuesday. Since I don't have any pain, I don't expect any unwelcome news. But you never know. This waiting to get results is why scans cause anxiety for so many people.....

August 01, 2007

Cancer service dog


My friend Jeanne, the Assertive Cancer Patient, has posted on her blog an article about Pumpkin, my wonderful cancer service dog. She's a good writer; I think you'll enjoy reading Pumpkin's and my story AND you'll enjoy Jeanne's take on life.

July 23, 2007

Two Deaths

Yesterday I learned that my dear young friend E died last Sunday July 15. Her funeral was yesterday. Of course, since we were at the beach with no cell or internet access, I didn't know about any of this until we had returned home.

I am so sad that I missed the chance for one more visit with E, that we weren't able to mourn with her family and friends. E. had just turned 30, she was married with two small children.

Tonight I learned that another young friend, K., passed away last Tuesday July 17. Her funeral was today. Again, I didn't learn this until it had already happened. K. was 35, married with three young children.

A little cancer humor from another list: "for all those, who lost the skirmish , lost the war, but went to the better place. Must be a great place , nobody's has come back and complained about it."

Saving the dog


Walking on a windy Washington beach is fun but can be challenging. The sand blows in the dog’s face, you wear a hat or hood, and hope to stay on your feet.

The mighty Moclips River flows into the Pacific Ocean just north of where we stayed. Trying to cross it (it was about knee-deep), Pumpkin got caught in the current and began to be swept away. I grabbed his leash, waded back to where he was struggling, and by holding onto the leash, was able to keep him on track while he paddled across with me. It was a bit scary, but he made it!

What to eat at the beach

Moclips is so tiny that we have to bring in everything. There’s no cell phone service, no gas station, no grocery store, no espresso stand. So I plan our meals carefully, creating a big spread sheet of what to bring from home and what to buy fresh. The house we rent has a grill and fully equipped kitchens. We grilled fish, chicken and lamb; baked challah from scratch; enjoyed home-made chicken soup.

We splurge for one dinner and go to the Ocean Crest Resort. Since there were six of us this time, we basically ate our way through about half the menu:

Alaskan King Crab legs, split lengthways and served with melted butter and sprinkled with thyme
Green salad with chevre cheese
Baked brie en croute served with candied nuts and fruit confit
Duck with maple sauce
Rack of lamb
Prime rib
Filet mignon
Black cod with duxelles
Cheesecake
Chocolate silk cake
Cherry pie

And since we were celebrating a birthday, our waiter took a photo of all of us and printed it on a card. What a great souvenir of a terrific vacation!

Rain, rain, go away, come again some other day


It rained for four of the seven days we were at the beach. We walked on the beach anyway and then sat in the hot tub.

We played Cranium for the first time. We played a 7-hour round of Monopoly, with breaks for baseball, beach walks and dinner when the rain let up.

We played Scrabble. (Rik earned 91 points by putting down SQUIRT – the S made a plural of another word, the Q landed on a double letter score and the whole word earned a triple word score.)

We played endless rounds of gin rummy and 8-5-3, Rik’s favorite three-handed card game. We watched a couple of movies, including John Wayne’s “McQ”. The closing scene was filmed at the beach north of Moclips and in front of the The Beach House where we stayed. I can hardly recommend it, but it does have some great footage of Seattle in the 1970's, enough to keep us entertained by guessing where each shot takes place.

A week at the beach



After our whirlwind trips early in July, Rik and I spent a week at the beach in Moclips, a tiny town on the Olympic peninsula of the Washington coast. This was our fourth summer at Moclips, although the first time we stayed for an entire week.

Here’s what we do at Moclips:

Walk on the beach
Eat
Take a nap
Walk on the beach
Read a book
Eat some more
Walk on the beach
Eat again
Gaze at stars

We spent a couple of days alone. Then friends joined us for one afternoon (they were already in Ocean Shores). And other friends came up for a long weekend.

It’s really very relaxing…the dog particularly loves running off-leash on the beach.

New York, New York, it’s a wonderful town!

While back east, I visited New York City. It was hot and humid, the streets steamed, and the odor of garbage rose from the bags strewn along the sidewalks. Ah, New York in the summer!

I enjoyed a childhood favorite, a chocolate egg cream, served with the bit of seltzer remaining in the bottle. Met some friends and spent the afternoon talking, then saw “Avenue Q” at the Golden Theatre, one of the dumpy old Broadway theatres that have not yet been renovated. "Avenue Q" is the Tony Award-winning show with puppets. It was funny, off-beat and very New York.

Rode the subway, took a cab, walked all over – the usual NY stuff!

Oh, I ♥ New York!

The perfect 80th birthday gift

If 80 = four score, then the perfect 80th birthday would be four scores:

1. Baseball cards of top-scoring Yankees (Dad’s favorite team);

2. Deck of playing cards for a high score;

3. Puzzle (scored pieces); and

4. Photo of my parents taken at their engagement – the best score of all!

A visit with the folks

The real reason for the big trip east was to celebrate my dad’s 80th birthday. Rik was a delegate at the National Education Association’s annual meeting in Philadelphia. I joined him after the conference ended for a family visit.

Well, my flight in to Philadelphia was delayed by bad weather. We didn’t have enough fuel to continue circling. We were redirected to Pittsburgh, where we refueled and landed about 3 hours late – just in time for Rik and my folks to drive to the airport and pick me up. (US Airways has a terrible on-time flight record.)

We spent a lovely weekend with my folks. I pampered my mom as much as she would let me by cooking dinner a couple of times. We took my folks out to an Italian restaurant for Dad’s birthday dinner.

In New Jersey, at least where my family lives, it’s evidently very expensive for restaurants to get a liquor license, so most places allow people to bring their own bottle of wine and the restaurant pops the cork for you without charging a fee. We brought a nice prosecco. I think sparkling wine makes every occasion more festive!

July 09, 2007

Summer Poem

Summer is here
It's hot and it's sunny
I have no energy to write
Let's have iced tea with honey

June 28, 2007

Happy birthday Dad!

Today my dad celebrated his 80th birthday. Since my parents live on the other coast, I spoke with him on the phone to wish him many happy returns of the day. I asked him, "How does it feel to be 80?" His replay: "I don't feel any different from 79."

So what do you get someone for their 80th birthday? I am open to suggestions....

June 24, 2007

Celebrating with delicious food

Last Friday our friends celebrated their significant wedding anniversary with a dinner party for 15. This is no easy feat, but they accomplished a most successful evening with the help of a talented local French chef. Since I got to help weigh in on the menu, I thought to share it with you --

Stuffed Belgium endive with grapefruit and spice cream cheese
Artichoke-pine nut-garlic feuillete

Toasted hazelnut salad w/cranberries and hazelnut vinaigrette

Seared sea bass with onion and apple coriander compote and hollandaise sauce
Marinated cauliflower and mushrooms
Colorful vegetable medley

Dessert was a white chocolate mousse cake studded with raspberries and almonds, PLUS an apricot tarte tatin and fresh fruit.

C'etait delicieux!

June 17, 2007

Race for the Cure


More than 15,000+ people in white (racers), pink (survivors) or blue (volunteers) t-shirts poured up the ramp to the Alaskan Way viaduct to participate in Puget Sound Komen's Race for the Cure. Picture them on the field at Qwest Stadium, picking up free samples from all the corporate sponsors. Hear them cheering the survivors' parade as 1200 women enter the field to the tune of "I Will Survive."

The Seattle Post-Intelligencer reported that the Race raised about $1.8 million Saturday. The Seattle Times called us cancer-fight foot soldiers.

The P-I also covered the story of seven women in one family who have been struck with breast cancer.

This is one of only two "pink" events I do during the year. (The other benefits Swedish Medical Center's digital mobile mammogram program.) You may remember that I am a little pink-phobic at times. Well, although the Komen Race is literally a sea of pink, it benefits such a worthy cause that I just have to be there.

Thanks to my generous sponsors, I raised $1270 to support early detection, free mammograms for under-served populations, grants to help low-income women undergoing cancer treatment make ends meet, even programs to help women care for lymphedema. Best of all, Komen funds research towards finding a cure.

My doctors always say, I just have to live long enough, one more month at a time, for the next new thing to be available to treat breast cancer.

June 15, 2007

More on health and happiness

If Jeanne's and my posts on health and happiness intrigued you, here are two more for your consideration:

Lisa is a young doctor who has cancer. She blogged on a classic parable, The Jar of Rocks.

The Cheeky Librarian also has a lot to say.

A new look for the blog

I decided to mix things up and take advantage of some new blogger.com features, such as the sidebar with links to favorite web sites. What do you think?

Rik's Birthday

Happy birthday to my wonderful husband Rik, who yesterday turned 47! Would you like to know how we celebrated?

Since Rik almost always gets up before I do, I like to put his birthday card on the table before I go to bed. That way he gets a pleasant surprise in the morning.

After school, I gave him a gift of a new wallet. The old one was looking a little beat up. It was very gratifying that he immediately took everything out of the old wallet and arranged it in the new wallet! I did remember the bubbeh-meiseh (superstition) of putting money inside so that he would always have money.

We went out for a lovely dinner with friends at the Union Square Grill. The restaurant was crowded, and our table wasn't ready when we arrived, so we sat at the bar pretending to be urban sophisticates. I had a martini (gin and 3 olives) and Rik had a mojito, not too sweet and made with plenty of mint. I promptly got smashed -- that was a lot of alcohol on an empty stomach!

We all shared a starter of mushroom and blue cheese strudel, served with fig jam. Delish! Rik ordered a salad with goat cheese and walnuts, some of which ended up on my bread plate. He had grilled lamb chops; I had a steak. Yes, even though we keep a kosher home, we do eat meat "out." Somehow I just can't make the leap to keeping more stringent kashrut in restaurants or other people's homes. Rik's chops came with blue cheese bread pudding and broccolini; mine was served with silky mashed potatoes and said broccolini.

Over coffee I gave Rik his final present -- a chocolate bar from Theo Chocolates -- 75% cacao from Ghana, Panama and Ecuador. He loved it, but was willing to share, and even offered a bite to our waitress. The rest of us shared a chocolate souffle served with vanilla ice cream. Then we rolled home (burp).

But I must tell you the real way Rik celebrates his birthday. Every year for his birthday he orders a bouquet of flowers to be delivered to his mother. He's been doing this since long before we met, using the same florist in Montreal. It's an annual tradition that illustrates Rik's big heart.

Insomnia

One of the side effects of living with mets has been terrible insomnia. Every night it seems to go like this:

11:00 PM Go to bed, fall asleep
2:00 AM Wake up with hot flash
2:20 AM Fall back asleep
4:00 AM Wake up with hot flash, identify pain, take vicodin
4:40 AM Fall back to sleep
5:30 AM Alarm goes off for Rik, have another hot flash
6:30 AM Hot flash
7:30 AM Hot flash
8:30 AM Hot flash
9:00 AM Give up; get out of bed

Today the 4 AM hot flash woke me from an unusually vivid dream featuring an earthquake, Pumpkin, Rik and an action-adventure-like escape. I don't know if this dream was a metaphor for cancer or just a bad dream (I ate too much for dinner last night).

In any event, the combination woke me completely. I got up and drank some water (I also had too much to drink last night!), took some vicodin, which often relaxes me enough to fall back to sleep. Not today. I heard the newspaper being delivered. The birds sang an early morning chorus. I started to think of all the things I need to do today.

At 4:55 AM I gave up and got up to write this post. Maybe I will take a nap this afternoon. Hopefully I will get a better night's sleep tonight!

June 13, 2007

Health and Happiness

How happy are we?

My friend Jeanne asked this most intriguing question on her blog The Assertive Cancer Patient. (Which, by the way, is worth a daily read. Jeanne is a terrific writer.)

I must agree with Jeanne: "I don’t think I would have experienced life during the past few years with the same degree of intensity and joy if I had not been diagnosed with cancer." But as much as the highs can feel higher, the lows can feel lower. I am in closer touch with my emotions these days. A beautiful sunset, a sentimental song, cuddling with my husband and dog can all make me tear up. On the other hand, the middle-of-the-night frights, when I think about mortailty, feel scarier than they used to.

Living on borrowed time puts one intensively in touch with life. I don't know if I am happier since I got cancer. But feeling everything so strongly gives life an edge that, like adding sea salt to finish a favorite dish, adds zest and piquant flavor to living.

Breast Cancer and (Pink) Stuff

I have found in my two bouts with breast cancer that when you get cancer, people want to give you stuff. They also offer to cook for you, drive you to appointments, even clean your house. But something in the human psyche seems to make us want to give tangible things to those who are sick.

For instance, when I was first diagnosed I received several books on breast cancer; on how to live with cancer; and even books of people's personal philosophy (Deepak Chopra was big in this category). I kept a copy of Rachel Naomi Remen's Kitchen Table Wisdom because it was so well written.

Then there was the pink stuff -- cans of tea from The Republic of Tea labelled Sip For The Cure; socks bearing the pink breast cancer ribbon; a fleece vest with same purchased via The Breast Cancer Site; even a stuffed dog version of Sparkle , Gilda Radner's pet.

I am sure a percentage of each of these items benefited breast cancer research, mammograms for low-income women and other worthy causes. But how much? And wouldn't the recipient organization be better served by a straight donation of $10 than a few cents from the purchase of a tchatchke?

June 11, 2007

My 2-minute cancer talk

This is what I said to the Coldwater Creek shoppers:

"The day I found out my cancer had returned, I went home and fell and broke my leg. I had a long recovery and plenty of time to think about the impact breast cancer would have on my life.

I had originally been diagnosed at age 39 with a small tumor. I had a lumpectomy, chemotherapy and radiation and was told it would probably never come back, go home and live your life. No one was more surprised than I that my cancer would return and spread to my bones when I was 42. I had developed stage IV, metastatic disease.

What is stage IV cancer? It's cancer that has spread outside of the breast. In my case I have tumors in my skull, spine, sternum, scapula, humerii, and femurs. I've been treated several times with radiation. But my cancer has been mostly stable on estrogen blockers. In August I will have lived with advanced cancer for 5 years.

I made a deal with my cancer. I think of it as a tenant in a house. If it would be quiet and not bother me, I would give it space. But if it acted up, I would have it zapped with radiation, drugs, whatever it took to become quiet again.

Cancer has had a huge impact on my life. I developed lymphedema, the arm-swelling condition that often accompanies surgery to remove lymph nodes. At age 42, I took medical retirement on disability from my career. I am in early (and permanent) menopause. Cancer cheated my husband and I out of raising children.

But I also now have time to do things that I didn't do before. I volunteer for a number of organizations. I sing in a choir. I walk my dog for a half-hour every day and I live the most active life I can.

My oncologist is always telling me that I just have to live long enough for the next new treatment to come down the road, that new things are available almost every month.

So what can you do? In addition to wearing a pink ribbon, you can do monthly breast self-exams. You can support Komen for the Cure. Your donation helps fund breast cancer research, mammograms for women who otherwise couldn't afford them, and even grants money to low-income women living with stage IV disease to help them make ends meet."

Coldwater Creek & Fashion for the Cure

Yesterday I modeled and spoke at a Coldwater Creek "Fashion for the Cure" event at Alderwood Mall benefiting the Komen Foundation.

I had sent an email to Komen about the Seattle Race, asking what plans they had (if any) to recognize women with mets as part of the Survivor Parade. The reply I received was on a completely different subject, asking if I would be interested in telling my survivor story at a Coldwater Creek store.

So on Thursday I went with a girlfriend to check out the clothes. The staff pampered us with lattes, chocolate, and our own style consultant. I must have tried on 25 items when we came up with three outfits: a long black dress with hot pink jacket; bright blue sleeveless shirt with white jeans; and orange sleeveless shirt over an orange print skirt. All very flattering and just my colors!

On Sunday the Coldwater Creek staff set up a table with refreshments. Everything in the store was 10% off, and Coldwater Creek donated 10% of the sales during the event to Komen. A local Mary Kay rep. was offering breast delf-exam shower cards, a 20% discount on purchases and a donation to Komen. A Komen rep. distributed brochures for the Race.

I spoke to 10-12 shoppers while they were enjoying their wine and cheese. Several of the women came up afterwards to talk with me in more detail. The modeling was wearing the outfits we had picked out while I spoke. So I changed and hung out again, speaking with women individually.

One woman's 42 year old daughter-in-law had just been diagnosed. Another woman told me about her mother. And none of them expected to see someone looking like me say that I had stage IV cancer.

The most intriguing part to me was hearing from the Coldwater Creek employees about their company's national pertnership with Komen. They probably didn't raise a lot of money yesterday, but they are tremendously proud of their employer being involved with this cause. Given that these events are repeated at stores all over the country, and that they are a long-time national sponsor of the Race for the Cure, Coldwater Creek has reason to be proud of the more than $2.9 million they've given to Komen over the years.

I expect to see many of these women at the Coldwater Creek booth at the Race on Saturday!

Survivors

Last March the Seattle Times published a piece on four people living with advanced cancer or AIDS. As I read it, I realized several things: I know two of the people profiled. I often compare stage IV cancer to AIDS. And that I have not read something on living with metastatic disease in a very long time, if ever. So I wrote a letter to the author and the Times to praise them for taking on an issue very few people ever talk about -- how to live with really bad cancer.

I sent my letter the day after the piece appeared in the paper. I got a call from the editor later in the week asking if they could publish it. And yesterday the Times published my letter.

June 08, 2007

The Breast Cancer Site

If The Breast Cancer Site receives 6 million clicks this month, their premiere sponsor will donate $20,000 for more free mammograms. Today they are at 17% of goal.

I click here every day. It’s a fast, easy way for the average person to take advocacy action and tell corporate America to provide funding for mammograms.

From the site:

“In just a few seconds each day, visitors can click on the pink "Fund Free Mammograms" button on the home page and, at no cost to them, help fund a free mammogram for a woman in need. The mammograms are paid for by The Breast Cancer Site's sponsors and distributed by the National Breast Cancer Foundation.

100% of sponsor advertising fees goes to our charitable partners.

The Breast Cancer Site was founded on October 23, 2000. Since that day, tens of millions of site visitors have given more than 16,000 mammograms to women in need via a simple and free daily click!”

But be warned – it’s a very "pink" site, with lots of merchandise for sale, and they don’t say what percentage of any purchase actually benefits free mammograms for women in need.

June 06, 2007

E.'s 30th birthday

I am just back from celebrating E.'s 30th birthday. When she was diagnosed with breast cancer 5 years ago, she said, "I just want to live to be thirty." A few weeks ago it was uncertain if she would make it this far. She has some more discomfort, is going to the doctor later this week to see if her cancer is progressing again. But today was about celebration.

There must have been more than sixty people, including lots of small children, crammed into the house and on the deck. A typical Northwest evening, 50 degrees and a bit rainy, not quite luau weather but E. wanted a Hawaiian-themed birthday party. I wore one of Rik's aloha shirts over a long-sleeved shirt. Brought my sister's recipe for ramen salad for the potluck, and enjoyed a hamburger, macaroni salad (very Hawaiian) as well as pineapple upside-down birthday cake. And a margarita!

RAMEN SALAD
2 (3 oz.) pkg. Ramen noodles (I like Oriental flavor)
1/2 head cabbage, sliced
1 cup shredded carrots
3 tbsp. sesame seeds
3 tbsp. sunflower seeds
1 c. sliced almonds
1/2 cup diced red pepper
4 green onions
1/2 cup cilantro, chopped

DRESSING:

3 tbsp. rice vinegar
3 tbsp. or less sugar or honey
2-4 tbsp. oil (can combine sesame oil and olive oil)
1/4 tsp. pepper
1 tbsp. soy sauce
Contents of ramen seasoning packet


Break apart ramen and toast with seeds and almonds in 350 degree oven for 6-7 minutes. Cool.

Combine all ingredients for salad.

Stir or shake dressing ingredients together to emulsify. Don't mix dressing with salad until last minute!

May add cooked & shredded chicken OR 1 can tuna.

June 05, 2007

sing Sing SING


It was a week followed by a whole weekend of singing --

Tuesday: rehearse with gajdas
Wednesday: rehearse with Dunava
Thursday: rehearse with band and boys
Friday: talk tech for Sunday's venue
Saturday afternoon: blocking and more rehearsal
Saturday night: Concert! (Party afterwards.)
Sunday: Sound check and concert at Benaroya Hall.

I had a little voice left on Monday, but not much.

The Saturday night concert, Dunava's first full-length show, was evidently a big success. About 150 people came to hear us sing at a terrific church venue north of Seattle. No mics needed here! Dave and the Dalmatians and tamburitza band Zlatne Strune opened for us. Kapa Gajda (3 bagpipe players and a tupan player) joined us for a special set of Rhodope music. Yes, evidently nine women can outsing 3 bagpipes! Dave & Dawgs and ZS then joined us for a rousing rendition of Emil Cossetto's Ladarke, a huge Croatian choral piece.

Sunday's gig was part of the Seattle Symphony's Central Europe Music Festival. About 25 people came to hear us at the Nordstrom Recital Hall.

If I am able to, I will post an audio file so you can hear us sing. Otherwise you can check out some older audio clips (and alot of photos!) on Dunava's My Space page.

May 30, 2007

E's not dead yet!

My friend E. has had a reprieve. Indeed, she has experienced a medical miracle. The radiation she received a month ago completely removed the blockage of her bowel, and she has been cleared to eat, resume treatment, and generally enjoy life, although she will still receive assistance from hospice.

It looks like E. will ive to celebrate her 30th birthday next week, plant her garden and reap the fruits, and spend the summer with her family. She may have a month or two; her new goal is to walk her daughter into her first kindergarten class in the fall.

Folklife!



Every Memorial Day weekend the Seattle Center becomes an enormous folk festival, with thousands of volunteer performers and tens of thousands of happy folkies. This year my choir Dunava sang outdoors on Saturday evening. If it's sunny, the crowds are bigger outside. But the competition from other stages and random busking musicians is fierce. Luckily, our audience loved our set. You can hear us here.

On Sunday morning Rik and I attended the annual fundraising breakfast for Northwest Folklife, the organization that sponsors the festival. This is our third year attending, and I KNOW that I can raise more money following the Benevon fundraising model. After all, I've done so for my synagogue three years running. It irks me no end that Folklife doesn't follow the model accurately enough. I liken it to baking a cake: if you leave out the chocolate, you may end up with cake, but it won't be chocolate cake.

Went back on Sunday night for the Balkan participatory dance and pravo'd till my toes hurt. It was great fun to be able to dance to live music from talented musicians.

You gotta love Folklife!

May 24, 2007

Yahrzeit

Jews have a custom. On the anniversary of the death of a loved one, we light a candle that burns for 24 hours, so that one day in the year, we remember our people. On the eve of the first day of the Shavu'ot holiday, as I always do, I lit a yahrzeit candle for Rabbi Charisse Natalie Kranes, z"l.

I lost my best friend to cervical cancer in 1989. Charisse was 28 and recently ordained as a rabbi when the abdominal pain that bothered her during her final months in school did not go away upon ordination and moving for a new job. The diagnosis? Cancer.

Charisse accomplished much in the few years she had. She studied in Israel twice, sang like an angel, married her true love, and achieved her dream of becoming a rabbi and serving as the spiritual leader for several congregations.

She was a good friend from the time we were teens. We went to Young Judaea conventions and summer camp together. I followed her to study in Israel. Even after "growing up," Charisse and I always managed to stay connected.

Yesterday marks the 18th anniversary of Charisse's death. She's now been dead longer than the time we knew each other. But I still mourn her untimely loss. We were supposed to grow old and grey together, the way my mother has shared her life with her high school friends. Instead, I got cancer too. I only hope I face my cancer journey with as much grace as Charisse did.

Zichrona livracha, may her memory be a blessing.

E. still hanging in there

Yesterday I drove north to visit E., my friend who is dying of metastatic breast cancer. I called last week to leave a message of love. She had sent some email. Then on Tuesday the phone rang! When E. calls, I go running.

We had a long visit together. We sat on the couch for a while, then went outside to look at her garden. Many of their friends spent a weekend getting the garden into shape so that E. and her family could enjoy spring's blossoming. Her husband mounted a guardian angel (a gift from a friend) to look over the garden, and the angels bears a plaque saying "Mom's Garden." I think it gives E. comfort to know that the earth's cycle of birth, fruitfulness and death is going on all around her.

Afterwards we snuggled up on the bed and talked about some really hard stuff, the things very few people are able to discuss. Topping the list of questions is, what happens after I die? E. and I agree that by nature, we human beings aren't equipped to know the answer.

E. heard from an oncology chaplain that some people achieve enlightenment and move on to a special place; others don't get the message here on earth and have to "repeat the course"; and some come back to set an example for others. And of course many people believe in a traditional heaven (and hell).

I think that what counts is the life we lead here. Our example of how we live becomes the legacy we leave for those who know us.

May 21, 2007

L.'s death

I learned last week that my friend L., who had been sent home to hospice care earlier this month, passed away. She died at home, with her partner close at hand. Her family had all been in to visit and say goodbye, although L. was not very responsive in her last days.

The social worker who runs my support group told us that when the doctor says s/he has no more treatment options to offer, some people relax into hospice care and fade quickly. Certainly we who have advanced cancer are living longer with our disease; our dying seems to be comparably shortened.

L. was one year older than I, had been living with metastatic breast cancer for one year longer than I have.

Last week I told my oncologist I was coming up on 5 years living with mets. His response? "That's your first five year anniversary." If he has hope, then how can I not?

By the way, my (younger) friend E. is still hanging in there...

Exercise

Lately I have been thinking about joining a gym. My medical history notwithstanding, I now weigh more than I ever have previously. While I'm by no means fat, I could stand to lose a few pounds. And at a recent doctor's visit, I was both weighed and measured. I am now 5 feet, 4 inches, after having spent my entire adult life at 5'5"! The loss of almost an inch of height took place over some time. Since I don't get measured regularly, we may never know exactly when I started to shrink, or whether it's a result of the surgery or early onset of menopause.

At any rate, I want to get into better condition, so I checked out a Curves gym today. In this chain of women-only gyms, the machines work via hydraulic pressure instead of weights. In 30 second spurts of activity, you move around a circuit to exercise upper and lower muscle groups. In between each machine is a small platform where you hang out for 30 seconds and dance around to keep up your heart rate. Pulsing music pours out the speakers and every 30 seconds a disembodied voice tells you to move to the next station. Every 8 minutes, the voice tells you to check your pulse. You complete the circuit twice in about 30 minutes. They recommend going three times a week.

This is an entirely new concept to me. All my life I got my exercise from dance. It was both aerobic and weight bearing. But I "retired" from Radost in 2001, and now my exercise has been limited to walking the dog, lymphedema exercises with free weights and a weekly yoga class.

I have a one-week guest pass, so we will see how I feel tomorrow; if I go again; and how much I can put up with that voice telling me to move on to the next station!

May 15, 2007

Toronto the Good

Just back from a whirlwind weekend in Toronto for Rik's best friend's daugher's bat mitzvah. We met Rik's parents there -- look at what we squeezed in to four days!

Arrived 4 PM Friday, quick change of clothing and joined everyone at Shabbat dinner Friday night.

The bat mitzvah on Saturday morning. A. read the entire double parsha, perhaps 100 lines of Hebrew. This is a feat that adults would tremble to take on! She was terrific, poised and confident, clear in her pronunciation. Her dvar Torah was insightful.
Visited with cousins in the afternoon.
A quick nap, then on to dinner with old family friends at a Japanese restaurant. Love that sushi!

Sunday Mother's Day brunch at Jamie Kennedy's Wine Bar. I had the roast asparagus with wild leeks and mushrooms, followed by potato rosti with smoked trout. We all shared the house specialty, Yukon Gold fries with two kinds of sea salt and thyme, served with lemon and mayonnaise. FABULOUS!
Followed by a visit with my folk dancing friend Jane in her amazing view apartment high above downtown TO.
Then off to the other side of town for a quick visit with another old Katz family friend.
Just time to shower and close our eyes for a cat nap, then off to the lavish bat mitzvah party.

Monday was brunch at the B.'s home, long Jewish goodbyes, and then off to the airport. Our plane was delayed on the tarmac for almost an hour, so by the time we returned to Seattle, we were extremely pooped. I don't know how RIk managed to teach all day today!

I'll post photos soon.

May 09, 2007

Limericks

My friend Carrie writes limericks. This is the one she composed for me:

I have a wonderful friend named Jill
Who knows cancer can be a real pill
First it was breasts
Then on to bone mets
But she still gets life's fill with strong will

May 08, 2007

My cocker spaniel saved my life



When I was recovering from that broken leg, my shrink recommended that I get a service dog. She thought a Cavalier King Charles spaniel would be the right size and have the right amount of energy to keep me mobile but not overwhelm me. So I searched online for a rescue dog and found the perfect animal…

This dog was listed on petfinder.com as part Cavalier, part cocker spaniel. Perhaps 7 years old, he had been abandoned at a Portland, Oregon animal shelter and was a day away from euthanasia when he was rescued. He was named Pumpkin for his sweet nature, was brought back to good health, neutered and micro-shipped and listed on the internet for adoption.

The day Pumpkin came to Seattle, my shrink had arranged to meet him with her special dog, Arturo Tosca-Bow-Wow. Arthur was particularly good at measuring the temperament of other dogs. Dr. Judy knew that if Arthur approved, Pumpkin would be the right dog for me. Well, Arthur and Pumpkin hit it off right away, and as they played together in our living room, Pumpkin came into our lives.

Dr. Judy wrote a prescription which I carry in my wallet:
“Jill Cohen suffers from a serious medical disorder that impairs her quality of life and mobility. I have prescribed a service dog to assist her.”

Over the coming months and years, as I recovered more completely, Pumpkin became my constant companion. Together we walked every day and my leg got stronger. Pumpkin goes with me to the oncologist, to treatment, to my support group. He goes out for lunch and for coffee. We run errands together to the post office and even to the grocery store. We’ve been through radiation treatment twice: once for my hip and once for both arms. We even go to a special yoga class for cancer patients, where Pumpkin excels at the Downward Dog pose. When I have Pumpkin with me, I’m able to go and do.

Dr. Judy says that Pumpkin has an uncanny ability to become like a piece of furniture. When we are out in public, he instinctively goes into a long “down” at my feet. Pumpkin has done basic obedience training with me. By temperament, he is suited to being a service dog. He has passed the American Kennel Club’s Canine Good Citizen test and proudly wears this patch on his vest.

Pumpkin’s vest also has a patch saying ”Ask to pet me, I’m friendly.” Many people come up to say hello when we are out and about. He is always friendly and well mannered. Indeed, my husband and I sometimes wonder if his previous owner was in a wheelchair, because Pumpkin seems particularly sensitive to chair-bound folks we meet.

So how did Pumpkin save my life? Well, having to walk him twice a day meant I had to become more active and regain strength in my legs, despite having multiple sites of bony metastases throughout my skeleton.

My husband and I have been through infertility and heart disease as well as breast cancer treatment. Our five attempts at private adoption failed when the birth mothers decided to not to place their children for adoption after the babies were born. International adoption was out of the question – we were told that no judge in another country would place a child with us given our health history. And even our home state would not place a child with us through the “foster-to-adopt” program. So Pumpkin has also become a substitute for the child we so wanted to raise.

Mostly though, Pumpkin loves me. He gives unconditional love, just because I rescued him from a shelter. He needs me, and I need him. Together we make a fine team!

Survivor's guilt

Today I woke up experiencing what I can only call survivor's guilt. L. may already be dead; dying E. will leave two very young children; P. passed away weeks before her life goal of seeing her son graduate high school; D. wasn't prepared for a poor surgical outcome, never bounced back from anesthetic and didn't have a chance to say goodbye. Why am I still here?

I didn't do anything to deserve cancer, yet I got it. I developed a life-threatening post-surgical infection. I got through chemo and radiation. Then the cancer came back worse than the first time. I broke my leg, was convinced i was dying. Yet here I am, four and a half years later, with limited mobility but truly excellent quality of life, still stable on estrogen blockers.

What's different about me? Or is it all random?

May 05, 2007

Hers is a good death

We are just back from visiting E. and her family. She was mobile, although using IV pain meds, and has a tube through her nose. E. was more coherent than I expected, with spurts of real energy intermingled with some drifting off. We had a wonderful long talk together; Rik talked with her husband; and then we stayed to have dinner with her family when E. said she would come sit in the living room with us while we all ate.

E. told me that she feels at peace with her impending death, that she knows her family will be well cared for, and that she feels carried on the wave of all the love she is receiving from family and friends.

I guess this IS what a good death looks like.

May 04, 2007

Two friends dying this week

Last night I heard from E. She was hospitalized with severe pain, which turned out to be an inoperable bowel obstruction. Her cancer has spread so far into her abdomen that it can't be removed. She hoped to be discharged to hospice at home today. E., you may recall, is something like a daughter and something like a sister to me. She is just 30, married with two young children.

I am overwhelmed at how she is handling her imminent death. She is making calls to gather her friends and family. Picture her lying on the hospital bed, her favorite Bluetooth earpiece glued to her ear, talking on her cell phone. People are coming in from all over to say goodbye. Whether she has a week or just a few days left, E. will be surrounded by people who love her and who she loves. And on top of all the visits she is writing special cards to give to her children on future significant moments she will miss (elementary school, high school, graduations, weddings, grandchildren).

Then there's L. from my support group. L. has been coming to group for about a year. She too has metastatic breast cancer and is maybe one year older than I am, has been living with mets one more year than I have. We've commiserated over her forced retirement from her beloved career, how to live on ongoing chemo for many years, planning her own funeral so that her partner won't have to guess what she wants.

L.'s brain mets took a turn for the worse last week and her oncologist sent her home to hospice, saying that he had nothing further in the way of treatment to offer her. Often when people get this news, they decide that it's time to stop struggling and relax to the inevitable. That's what L. has done. Between one week and the next, she grew progressively less and less responsive. When she wasn't at group on Tuesday, we knew something was wrong. Her partner tells me she coudl die any day. He's talking with her sister to make sure that they all follow L.'s wishes.

Theirs are 21st century deaths from cancer.

May 02, 2007

My dog is a cone head


Pumpkin has recovered nicely from his surgery. He has a 3 inch scar winding up his left front paw. But because the scab isn't fully formed, even a week later, he needs to wear an Elizabethan cone to keep him from licking and worrying at it. I think the cone, plus his truly terrible summer haircut, combine to make him look even goofier than ever! In this photo you can see that he can just barely hold onto his favorite toy, a squeaky soccer ball he stole from my friend Jeanne's Golden Retriever GB.

You can keep up to date with Jeanne and her cancer story here.

April 27, 2007

Pumpkin has cancer too


When we rescued Pumpkin three years ago, he came with a bow in his hair -- and a lump the size of a golf ball on his left front leg. We had it removed and the vet confirmed it was a malignant sarcoma. Yes, both Pumpkin and I have cancer! However, this kind of sarcoma is not likely to spread, but it does return.

It came back almost exactly a year later; we had it removed again. Now, two years later, it's back yet once more. So yesterday Pumpkin had surgery again.

The vet says he can continue to remove the sarcoma should it recur again (as it most likely will). Some day, we will face the likelihood that there is no longer enough tissue remaining to support his leg, and then the answer will be amputation.

The vet also says dogs are born with thee legs and a spare. On Wednesday I saw a three-legged dog walking his person (literally -- the dog was leading). And when I picked Pumpkin up after yesterday's procedure, I met a dog who just had a leg amputated after being hit by a car.

Pumpkin will wear the bandage for 5-7 days. Can't get it wet, so he wears a "mediboot" when he goes outside.

April 26, 2007

She's not dead!

Just wanted to let you all know that I heard from my friend E. and she says (quoting Monty Python's Spamalot) "I'm not dead!" While she was in the hospital there was some confusion over what information got sent out to friends. Just goes to show how important it is to be clear when we communicate.

E. has the support of hospice care at home and continues to receive radiation for her tumor. I expect to visit with her late next week.

We will all die someday, and those of us with advanced cancer sooner than we expected, but I'm glad to report E. is still here.

April 23, 2007

Losing another friend?

It seems that my friend E. is dying of metastatic breast cancer. We have been close friends since we met at a Young Survival Coalition conference three years ago and traveled home together. We talked for 5+ hours on the plane without stopping!

In a way, E. has been something of a daughter (I'm ALMOST old enough to be her mother) and something of a sister. She just turned 30, is married with two very young children.

E. asked me a long time ago, "Will I live to see 30?" I told her of course she would! But now one tumor continues to grow without restraint, causes her pain, and it's probably a matter of weeks, maybe days.

Cancer sucks.

April 15, 2007

Sponsor me!

I am again raising funds for the Komen Puget Sound Race for the Cure on June 16, 2007.

Click here to visit my personal page and pledge your support.

I've been a recipient of Komen funds in the past, and I believe in their mission -- to fund innovative outreach and awareness programs for medically under-served communities in Western Washington and national breast cancer research. Komen is one of the few cancer organizations that directly supports women living with cancer.

This year I am also coordinating a team. So if you want to walk with me, you can register for the event ($25 fee) and click on Join An Existing Team, then search for the Dancing With Cancer team. I'm doing the 1 mile walk -- the 5K is just a bit too much for my hips! The deadline for team registration is Friday, May 25th at 5 PM.

Whatever you can give will help. I will update this blog with my progress.

April 13, 2007

A matza recipe for you

In case you didn't eat enough matza this past week during Passover. B'tayavon!

PASSOVER ALMOND ROCA CANDY

1 cup butter
1 cup brown sugar
1 bag chocolate chips
1/2 cup sliced or chopped toasted almonds

Completely cover a rimmed cookie sheet with aluminum foil, dull side up.

Preheat oven to 350 degrees.

Place 4 whole matzot on foil. Break as needed to fit on pan.

Toast almonds in a dry skillet for 3-4 minutes or until light brown and fragrant.

Combine butter and brown sugar in a medium saucepan. Boil for 5 minutes, stirring occasionally. Mixture will foam up the sides of the saucepan.

Pour mixture neatly over matzot. Bake at 350 degrees for 5 minutes.

Remove from oven and sprinkle immediately with chocolate chips. When chips have softened, spread evenly with knife or spatula.

Scatter sliced or chopped almonds.

Chill 1 hour. Break into small pieces and store in refrigerator or freezer. Serves a big seder crowd! (This recipe halves easily to serve fewer people.)

Jill & Pumpkin 2006

Famous again

I am still riding the wave of fame generated by my People Magazine quote. Today there is a story about me in the JT News, Seattle's Jewish newspaper.

Passover has ended for another year. On Tuesday we went out to celebrate with a veritable chametz fest of pizza and beer. It only took me 3 hours to turn the kitchen back to normal and put away all the Passover pots, dishes etc. They're like good friends who come to visit once a year and turn your house upside down. You're excited to see them every year, then relieved to see them go away again.

April 02, 2007

Happy Passover!

To all those celebrating Passover, and to everyone else just because I have a good wish to share --

May we be liberated from the tyranny of cancer and it's treatments by the reality of a cure, speedily and in our time, amen.

Chag Pesach sameach vekasher.

March 30, 2007

People Magazine quote

The article on Elizabeth Edwards begins on p. 54. I am quoted in a side bar entitled "When Breast Cancer Returns" on p. 56.

"Jill Cohen thought she had beaten breast cancer diagnosed three years earlier, when, in 2002, cancer was found again -- this time in her bones. But on a regimen including hormone therapy and radiation, Cohen , 47, is very much on the go, volunteering and traveling with her husband. 'This is not the life I planned,' she says, 'but it's a good life anyway.'"

March 29, 2007

I'm in People Magazine!

In tomorrow's People Magazine, there will be a story on Elizabeth Edwards' cancer recurrence with metastatic breast cancer and a quote from yours truly!

In the end, the side bar with my story was shortened to make room for news about White House press secretary Tony Snow's recurrence with stage IV colon cancer. However, you can read my one quote in the issue appearing on news stands tomorrow (with American Idol on the cover).

Now how much do I have left of my 15 minutes of fame?

March 28, 2007

SONG: I am not dead yet!

While in Vegas three of us at the retreat saw "Spamalot." Adapted for Broadway from the film "Monty Python and the Holy Grail," it was laugh-out-loud funny. I laughed, I cried, I snorted, I blew my nose repeatedly.

Here is a quote from one song that we thought was particularly appropriate to living with mets. We liked it so much that after the show we bought buttons imprinted with "I'm not dead yet." Next morning we wore them to our first session and sang this verse from the song --

I am not dead yet
(I can dance and I can sing)

I am not dead yet
(I can do the Highland Fling)

I am not dead yet --
No need to go to bed
No need to call the doctor 'cause
I'm not yet dead!

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