December 31, 2008

Florida part 1

Last week we traveled to Florida for a family visit. We flew into Orlando, rented a car and stayed overnight. We spent the morning at Downtown Disney, which is the shopping and eating part of "The Mouse" (no admission fee, no rides). There was a giant Lego display for kids to play with; being big kids ourselves, we tried to build a fort with a moat. I had to pose with the Lego doggies.

Then we drove to visit my cousins in Coconut Creek (near Fort Lauderdale). We spent an evening of Chanukah with them, watching the candles, eating potato latkes and talking, talking, talking!

These cousins -- two sisters -- are in their mid-eighties. My father's father and their grandfather were brothers. We met in the late 1960s when my family had moved from New York to to Cincinnati and my mother was lonely for family. My dad remembered he had cousins in Cleveland, called them up one day and said "Hello, this is Sheldon Cohen." (At the time, Sheldon Cohen was the name of the head of the IRS. Imagine my cousins' surprise -- they thought they were being audited by the head of the IRS himself!)

I found a lovely hotel right on the beach, the Ocean Sky Resort and Hotel. We had a king bed, small fridge, balcony with partial view (meaning you had to sit sideways to see the ocean). I understand why people stay on the beach for a week. The restaurant is right by the pool, there was even a bar, and it all overlooks the ocean.

The Lauderdale area beach is narrow, especially compared with the Pacific ocean beach at Moclips. But we had a little time to walk on the sand, dip our toes into the Atlantic, and take photos of jelly fish.

December 29, 2008

A little less edema

Evidently the full time bandaging has helped. I seem to have a smidge less edema in my hand. Today I am wearing the sleeve and glove for a few hours so that I can have the use of my hand. Maybe the fluid has begun to move up my arm, because my sleeve feels tight around the elbow. I will bandage again later this afternoon.

Last night I couldn't figure out why I had trouble falling asleep despite having taken pain meds and ativan (lorazepam). In my fogged mind I realized that two of my fingers were numb at the tips poking out of the bandaging. Either I had wrapped too tightly or something was pinching a nerve. At 3 AM I finally realized what was going on and tore off the bandaging as fast as possible. Then with the feeling restored in my fingertips I was able to sleep soundly and when I awoke my hand was not swollen.

December 27, 2008

Still bandaging

Sorry to let so much time go by, but it's hard to type while bandaged! I've been spending up to 20 hours a day wrapped and can't see any improvement. On the other hand, the edema isn't getting worse either. Given that the first available appointment for manual lymphatic drainage therapy was in January, bandaging is about all I can do. Even if it limits what I can do.

Today I have places to go, things to do so and people to see, so I plan to wear my sleeve and glove (maybe with a second glove on top of the first one). When it becomes more than I can handle, I will wrap again.


December 22, 2008

Lymphedema continues

I still have edema in my hand, despite several days of wearing the sleeve and glove during the day and bandaging at night. So today I wrapped my arm before breakfast and plan to stay wrapped until tomorrow morning. Hopefully that will make a difference. Thank goodness for drugs to help me sleep while bandaged.

I also called the physical therapist and got the earliest appointment available. Maybe I won't need it, but I'd rather have an appointment and cancel than be stuck and unable to get in to see someone.

Click here to read more about lymphedema. I think that after looking in the mirror at one's scars, lymphedema is the worst daily reminder of breast cancer.

Happy Chanukah!

Today was the first day of Chanukah 5769. We celebrated in the usual fashion: lit the chanukiyah, sang the blessings, and ate potato latkes. The whole house smells from fried potatoes!

(Although today was the first day, it was already the second night, hence the two flames in the photo. Well, three if you count the shamash.)

Chanukah is possibly the least important but most widely celebrated Jewish holiday due to it's proximity to Christmas. Rik and I don't exchange gifts but do get together with friends, play games, eat food fried in oil to remember the miracle, and sing. It's the perfect solstice celebration.

On other fronts, we've been snowed in for several days with very un-Seattle-like freezing temperatures and more than 8 inches of snow. I did get out to attend a wedding yesterday (a friend who has chains on her car's tires offered a lift). And our neighbors hosted a block party which everyone attended, since we were all able to walk over.

Chag sameach, wishing us all the best of the season.....

December 19, 2008

A touch of edema

I went to bed Wednesday night with some edema in my left hand, woke up Thursday morning and it was still there. Since we'd had snow overnight and schools were closed, meaning Rik would be home all day, I seized the moment and wrapped my arm. Bandaging is always my first step in dealing with a lymphedema flare up.

I woke up today with about the same amount of edema in my hand, so clearly I didn't do such a good job of bandaging. I'm wearing a sleeve and glove today so that I can do things (like type), but I plan to bandage again tonight.

Schools are closed again today due to snow. We went for a walk with the dog -- Pumpkin loves going out in the snow! Rik heard a story on the radio about why dogs enjoy snow so much. Something to do with the texture....

After dog walking, we took the car out to the nearby grocery store. Our elderly neighbors needed some things and had asked for a ride. Originally we were going to walk, but after going around the block with Pumpkin we thought it would actually be safer driving than walking home with bags of groceries. We took advantage of the closest store and also picked up my new meds from the drugstore in the same block.

More on Arimidex as I start taking it!

December 17, 2008

Next treatment: Arimidex

The new spot in my breast is apparently a cancer recurrence. The full pathology report indicates it's highly ER/PR + and Her2/neu negative, as in the past.

My oncologist will start me on Arimidex, the remaining estrogen blocker that I have not already tried. I'll take a pill daily. Dr. G says that stopping the tamoxifen will help anyway, and I may even lose some of the weight it's added to my 5'4" frame. Dr. G also told me the risk for ipsilateral (same side) metachronous (recurrent) breast cancer is about 14%. He thinks the safest bet about the potential lung lesion is that it, too is breast cancer and therefore would likely respond to systemic treatment.

Arimidex (anastrazole) is closely related to Femara (letrozole), which gave me good coverage for about 2.5 years. The side effects are osteoporosis, which would be addressed by continuing me on IV Zometa, and joint pain, for which I'll have pain killers. Who knows? I may get a long enough run on Arimidex that by the time it stops working, something new will come along.

So this is good news all around. I moved up and down on the merry-go-round, but everything is still very treatable. A new drug for a new year....

December 15, 2008

News on metastatic breast cancer

This might be the right week to change treatments. The annual San Antonio Breast Cancer Symposium
just ended and it's been in the news.

Just look at some of the posters that were presented. These are only a few of the things that may benefit me in the future --
Effective metabolic intervention of breast cancer progression and metastasis

A novel capecitabine dosing schedule combined with bevacizumab is safe and active in patients with metastatic breast cancer: a phase II study

All-oral combination of oral vinorelbine (NVBo) and capecitabine (X) in HER2-negative metastatic breast cancer (MBC): latest results of a multicenter, international phase II trial with a median follow-up of 37.7 months

High dose estrogen as a salvage hormonal strategy for highly refractory metastatic breast cancer (MBC): "back to the future"

SABRE-B: a randomized phase II trial evaluating the safety and efficacy of combining sunitinib (S) with paclitaxel (P) + bevacizumab (B) as first-line treatment for HER2-negative metastatic breast cancer (MBC): final results

The one featuring high dose estrogen has received a lot of press. Read this CNN article for more.

December 12, 2008

"You've got to have a positive attitude" -- feh!

Today I was interviewed for a short film to be screened at Gilda's Club Seattle's annual fashion show and fundraiser next spring. I attend yoga class regularly. I've been there just about every Friday for the past four years. So I was happy to say yes to the interview request. And to participate in the fashion show. And to help the committee achieve it's fundraising goals. Gilda's Club really is a place where people living with cancer can "come as we are."

But one question today really got me. The interviewer said she thought I had a really positive attitude and that made a difference. I reacted very strongly to this, one of my hot button issues.

Cancer is the only disease I can think of where people say that those of us who've got it must have a positive attitude. Well, there's very little about cancer to be positive about! Having cancer is terrible. No one would choose to have cancer. And those of us who have cancer need to be able to express ourselves. If we feel good, that's fine. But if we feel ill, or the treatments are rough on us, or we're depressed, or we're angry, or you name it -- we need to be able to express those feelings.

It's true that I'm a glass-half-full kind of person, always have been, even with metastatic cancer. But even I have times when I need to cry or rage against the universe for sticking me with this awful disease. It's just that other people usually don't get to see it.

So when someone you know is diagnosed with cancer, don't focus on being positive. Show support, ask how you can help, offer a shoulder to lean on. Let the person living in CancerLand say whatever they need to say. Be strong enough to listen to them, even if (especially if) they need to talk about their fears.

That's what we need from our family and friends.

December 11, 2008

Biopsy results

Yes, the spot on my left breast is breast cancer. Again.

I saw Dr. Patricia Dawson, my breast surgeon, today to discuss my options. The preliminary biopsy results don't indicate the ER/PR or Her2/neu status, but it's definitely cancer. Those results should be available when I see my oncologist next Wednesday.

Dr. Dawson gave me three options:
1) standard treatment for a recurrence is a total mastectomy; OR
2) a lumpectomy; OR
3) treat systemically (i.e. with medication) to see if the tumor responds by shrinking.

We will let Dr. Sheldon Goldberg, the best oncologist in Seattle, weigh in, and hope that he agrees that option 3 is the way to go. Given the fact that my cancer had already spread (metastasized), Dr. Dawson thinks there is no reason to schedule surgery when a systemic treatment might do the trick. Plus systemic treatment (chemotherapy, anti-estrogen medication) would also have an impact on my metastases. Surgery would not.

I see Dr. Goldberg on Wednesday and will have more information to report then. In the meantime, this is a good outcome -- I don't have to have surgery immediately.

December 10, 2008


I receive a monthly e-letter from Barbara Sofer of Hadassah. This story brought tears to my eyes. Dr. Melamed- Cohen is so right: no matter what life deals you, "Until the last moment, one has to live and rejoice and give thanks to the Creator."

The late Randy Pausch delivered the now internationally famous Last Lecture, at Carnegie Mellon University before he died at the age of 47. A lecture at the same level of wisdom was delivered recently at Hadassah's Ein Kerem campus. The speaker was Dr. Rachamim Melamed-Cohen, a writer and philosopher, who has suffered from ALS, (Lou Gehrig's disease) for more than 15 years. He's completely immobilized except for his eye muscles. But with technology, he can activate a computer with his eyes and type his thoughts. They are simultaneously translated into a voice-activation program. In the audience were Hadassah medical and nursing students and faculty, including his own doctor, Professor David Michael Linton, who has provided his respiratory care for nine years.

Dr. Melamed-Cohen reminded the future physicians and nurses that people in wheel chairs may be the height of ten-year olds, but they have the mental acuity of grown ups. They want to be acknowledged as more than their medical charts which only list their problems and not their life strengths. "I feel at times that God has allowed me to live in order to show the world that even in such a condition one can continue to be creative and contribute to society," he told the students. "Until the last moment, one has to live and rejoice and give thanks to the Creator."

For more of Barbara's stories, click here.

To subscribe to Barbara's Jerusalem Netletter, send a blank message to

And click here for more about Hadassah.

December 09, 2008


I was a little sore last night (had to sleep wearing a bra to give support to the biopsy site). But today has been fine. I was told to take it easy for 24 hours.

All the usual routine --
Woke up
Checked email
(Took a call from the shul's executive director)
Showered, ate breakfast, walked the dog

Then I went out to buy groceries and run some errands. When I came home it was pouring rain, so I baked some cherry-chocolate chip cookies and caught up on some volunteer work. All in all, a typical day.

I expect to get the biopsy results on Thursday.

December 08, 2008

Biopsy today

I had the biopsy today. I took 0.5 mg ativan beforehand to reduce stress and was I glad I did! My blood pressure taken just before the procedure was 140/76, unusually high for me. Taken again immediately afterwards it went down to a more typical 110/70. Dr. Kelly talked me through the whole thing and Rik was there for emotional support.

First the nurse took my blood pressure. Then Dr. Kelly draped my left breast with sterile cloths and did an ultrasound of the area. She gave me a lot of lidocaine to numb any pain. Then she isolated the right spot through the ultrasound and using a hollow core needle, took a sample of tissue to send to the pathologist. Actually she took two samples. She warned me I'd hear a snapping sound -- I involuntarily flinched a bit but not enough to cause any trouble. Then she placed a tiny metal marker near the biopsy site under my skin. I had a mammogram to confirm that it was placed, got dressed and we went home.

I promptly fell asleep for a couple of hours. Now I'm sore but that's what pain meds and ice packs are for. I get the results on Thursday.

December 05, 2008

Encore presentation of "my left hand"

Jewish Family Service will host another presentation of my friend Joshua Isaac's film, my left hand, on Thursday, January 29th. They are partnering with our synagogue, Congregation Beth Shalom.

Tickets are now available through Brown Paper Tickets.

my left hand: A film by Joshua Isaac
Thursday, January 29, 7:00 pm
Congregation Beth Shalom
6800 35th Ave NE, Seattle
1-800-838-3006 or

Josh's parents were long-time members of Beth Shalom and he was raised in this community. Now as an adult he's an active member, raising his kids in turn. You can catch up on Josh's journey with advanced epithelioid sarcoma on his blog.

December 04, 2008

Today's tests

Today I had a mammogram and ultrasound of the left breast. When the radiologist said, "Do you want to do the biopsy today also?", I asked how long it takes to get the results. She said to expect 2-3 days.

As it happens, I have a major fundraiser I'm working on taking place this weekend, so I would prefer not to be distracted about waiting for a pathology report. So I decided to postpone the biopsy until next week.

The Breast Center staff were very good about working with me to set up appointments. First we got on the surgeon's calendar for next Thursday. Then, working backward, we scheduled the biopsy for next Monday. The pathology report should be back from the lab in time for the appointment with the surgeon.

IF the pathology report is positive for cancer, I'll be perfectly positioned to talk about options with my breast surgeon.

And IF the pathology is negative for cancer, the nurse will call me and we can cancel the surgical consult.

Either way it's a win-win for me: I get the information in a timely way and get to make treatment choices right away.

December 03, 2008

Ultrasound and biopsy

Tomorrow I will have the ultrasound and biopsy for the suspicious spot on my left breast. Dr. Mary Kelly did my first biopsy more than nine years ago in 1999. I like her and was glad she was available. She works at the Swedish Medical Center's Comprehensive Breast Center at the Cherry Hill campus, where I received treatment for that first round of breast cancer. I'm comfortable there, know and like the staff. It's where I continue to get my mammograms.

How am I coping? I am scared that this might be a new primary cancer. Of course, if it is, and if it's breast cancer, I've already been through that treatment -- surgery, chemo, maybe radiation (but I'm not sure they can re-radiate the same breast). And if it's not breast cancer, according to my cousin the oncologist, it might be nothing. A friend told me there is only a 3% chance of developing a new cancer in the same breast. The American Cancer Society says,
A woman with cancer in one breast has a 3- to 4-fold increased risk of developing a new cancer in the other breast or in another part of the same breast. This is different from a recurrence (return) of the first cancer.

More news when we get the results, which might take a week.

Overslept again

It is so much harder to wake up at 6 AM in the fall and winter than it was in the summer! This is the second week in a row that I have missed attending morning minyan to say kaddish for my dad.

Last night I reviewed the correct Hebrew spelling of my dad's name with my sister. Last week she and Mom ordered a monument and we will have the unveiling in the spring. Dad's stone will have his Hebrew name (Shimon Shir ben Zalman haKohen) and his English name (Sheldon Charles Cohen).

Because Mom ordered a double headstone (always thinking ahead, my mother), there will be room to add her name, may that day be many years in the future.

And between the names, since my dad was so proud of being a Kohen, there will be an etching of two hands placed as though blessing birkat hakohanim.

Dad would like that. Zichrono l'vracha, Poppy -- may your memory be a blessing. We miss you.

November 29, 2008

Our Thanksgiving celebration

We had a truly lovely Thanksgiving day with family and friends. My mom came to visit and our friends the D's joined us for a great afternoon and evening.

Here is our Thanksgiving menu, entirely home made except for the beverages:
sparkling rose wine and cider
green salad with cranberry dressing, pears and spiced walnuts
grill-roasted turkey
mushroom stuffing
tricolor roasted sweet potatoes
salmon in filo pastry (for the vegetarians)
brussels sprouts sauteed in olive oil and tossed with hazelnuts
whole wheat rolls

Then we took a break to walk the dog and - burp - digest.

We played a new parlor game I had just learned called Picture Telephone. Each player writes a sentence on a piece of paper and then passes it to the next person, who draws what the sentence says, then folds the paper so that only the drawing is visible. Pass again and now write a sentence of what you think the drawing means. Fold the paper again so only the new sentence is visible, pass to the next person and draw as above. Repeat, folding the paper so only a drawing or sentence is visible, and when you get back your original sheet of paper, unfold it and read the first sentence and last sentences aloud.

We laughed so hard we cried.

Then we sat down for dessert:

chocolate pecan pie
pumpkin bread with chocolate chips
dark chocolate covered almonds rolled in turbinado sugar and sea salt (these were from Trader Joe's)
coffee and tea

At the end of the evening we played Apples to Apples. A great time was had by all.

November 26, 2008

Scan results - a mixed bag

The report from yesterday's CT scan was a mixed bag. The small lesion in my lung has grown from 5 mm to 8 mm, still small but located in a place that would be tough to biopsy.

The CT also revealed a mass in my left breast. This is the first time my oncologist and I have noticed it on a scan report but evidently it was present during the last scan in August. This mass has not quite doubled in size since May (from 4mm to 7.6 mm).

Dr. G was unable to palpate the lump in a physical exam, it's so deep or tiny (or both). So I will have a biopsy since this area is easier to reach than the spot in the lung. Once biopsied and cultured, we will see what grows. If it's breast cancer, we will retest for ER/PR and Her 2 status. If it's not breast cancer... we'll cross that bridge when and if we come to it.

November 25, 2008

Seattle's other best breakfast

Last Sunday I dragged Rik to Molly Moon's Ice Cream Shop for their winter Sunday morning breakfast -- organic oatmeal served with a huge scoop of the ice cream of your choice, plus a choice of complimentary toppings: chopped nuts, dried cherries, candied ginger, chopped chocolate, and spices (cinnamon, nutmeg, cardamom and cloves). I had the salted caramel flavor, Rik had maple walnut. They were both a big hit.

It was an UNBELIEVABLY good (second) breakfast. (We had already attended morning minyan and so had eaten a little something earlier.) If you live in Seattle, pick a Sunday morning and run, don't walk, to Molly Moon's in Wallingford. Your taste buds will be so happy!

You can read more on Molly Moon's blog .

Scan today

If you remember, the suspicious spot on my lung didn't appear to grow much between June and August, so we decided not to do the biopsy and to re-scan in three months. This morning I had the three month follow-up CT scan.

What I don't like about CT scans is that they stick me in a vein to start an IV (can't use the portacath). The contrast dye smells funny, tastes metallic, makes me feel hot all over AND as though I have to urinate. However, it doesn't take long and the technician got my vein on her first try.

I get the results tomorrow.

Again with the bat mitzvah?!

My mom came for Thanksgiving and brought with her the photos from my bat mitzvah. We had a laugh looking at them again. These were proofs. We never ordered pictures because they were so terrible! I was so unhappy about the dress that in every photo I'm either frowning or angry.

I chose a few to post that illustrate the look of the early 1970's. Oy, what we wore! The long hair. The bad clothes. (Vests were evidently popular among teens.) These looks were stylish in 1972 but in retrospect are just funny. Except for Mom; her outfit still looks stylish.

I hope you enjoy them!

November 24, 2008

More bat mitzvah memories

Last Shabbat, parashat Chayyei Sarah 5769, was the 36th anniversary of my bat mitzvah. In it, Sarah dies and Abraham sends his steward to arrange a marriage for his son Isaac to a nice Jewish girl from his family back in Mesopotamia. The steward doesn't know how he will meet the right girl for Isaac, and so he prays that she will offer water to him and to his camels. Rebekah comes along and does exactly this. She agrees to return with him and marry Isaac. And when she sees Isaac, she falls off her camel -- struck with love at first sight.

I was awaiting being called to the Torah for an aliyah when I realized that this is the portion Rabbi Gartenberg referred to when Rik and I had our aufruf, the aliyah before our wedding. He told us the story of Rebekah falling off her camel as a metaphor for our love at first sight, how this kind of experience can be so powerful, even overwhelming, that we lose our balance. I didn't realize until this past weekend that the story was from my own bat mitzvah portion!

Life is filled with circles, closing and overlapping...

November 21, 2008

Page 56

I saw this on Facebook and think it is just too profound for something so random.

Try it and if you like it, instead of or in addition to posting on your own Facebook wall, please include the quote you find in a comment here.

Page 56 Rules:
* Grab the book nearest you. Right now.
* Turn to page 56.
* Find the fifth sentence.
* Post that sentence along with these instructions in a note to your wall.
* Don't dig for your favorite book, the coolest, the most intellectual. Use the CLOSEST.

My page 56 quote? "Chances are you still have areas that need work." (Terry Axelrod, "Beyond the Ask Event")

November 20, 2008

Spiced Chocolate Truffles

Here is chef Greg Atkinson's recipe for Spiced Chocolate Truffles with Cocoa Nibs from the Seattle Times --

Makes 36 bite-sized candies

(Cocoa "nibs," which are roasted and crushed but otherwise unprocessed cocoa beans, are slightly bitter. For hard-core chocolate lovers, they represent the ultimate chocolate experience. Spices and cocoa nibs combine to make these chocolate truffles an adults-only treat.)

For the coating:
¼ cup cocoa nibs
¼ cup unsweetened cocoa powder
½ teaspoon ground cinnamon
1/8 teaspoon cayenne pepper

For the filling:
½ cup whipping cream
2 egg yolks
1 tablespoon vanilla extract
½ teaspoon ground cinnamon
¼ teaspoon salt
1/8 teaspoon cayenne pepper
12 ounces bittersweet chocolate, chopped

1. Line a sheet pan with baker's parchment or wax paper. Prepare the coating mixture by combining the cocoa nibs, cocoa powder, cinnamon and cayenne pepper in a small food processor or coffee mill; pulse the motor on and off to break up the nibs and combine the ingredients, but don't pulverize the nibs entirely; they should keep some of their crunchy texture.

2. To make the filling, heat the whipping cream in a small saucepan until it is steaming hot. Whisk the egg yolks in a small bowl with the vanilla, cinnamon, salt and cayenne pepper. Incorporate a little of the hot cream into the egg yolks to temper them, then stir the mixture back into the saucepan and cook, stirring gently with a heat-proof silicone spatula until the cream is slightly thickened, about two minutes. Do not let the mixture boil.

3. Take the pan off the heat and stir the chopped chocolate into the cream mixture until chocolate is melted and mixture is smooth. Continue stirring until the mixture has begun to cool. Move it to a pastry bag or a 1-gallon, freezer-strength, ziplock bag and pipe it onto the sheet pan in 1-inch dollops.

4. Let the dollops of filling cool to room temperature, then roll them into balls. Roll the balls in the cocoa nib mixture. Keep the finished truffles cold for up to a week; warm them to room temperature just before serving.

Greg Atkinson, 2008

Copyright © 2008 The Seattle Times Company

Today I am a fountain pen

One upon a time, when boys became bar mitzvah, they frequently received a fountain pen as a gift. The joke went, when the bar mitzvah boy got up to speak to the synagogue, he would say, “Today I am a fountain pen.”

This week marks the 36th anniversary of my bat mitzvah at Temple Sholom in Cincinnati, Ohio. Rabbi Donald Splansky was our new rabbi, and I was the first bat mitzvah of his tenure. I remember thinking to myself, after we had finished the Torah service and I had completed everything I spent a year learning, "That's it? All that work and I'm done?"

Thirty-six is a significant Jewish number. In Hebrew, every letter has a numerical value. The word chai (life) has a value of 18. Therefore twice chai is 36. (This is why you often see charitable donations from Jews given in multiples of 36.)

I wanted to mark this anniversary. Since I am mourning my father, I'm not leading services on Shabbat. So I learned a new set of tunes and led the Torah service this morning at minyan. (We read the Torah on Mondays and Thursday as well as Shabbat.) Being the daughter of a Cohen, I also received the first aliyah.

It was challenging to learn new tunes on the fly, but everyone seemed to enjoy my singing and the opportunity to help me celebrate a Jewish anniversary. The spiced chocolate truffles I brought along to share as a snack might also have helped contribute to the festive feeling!

After services ended, I went to the shul's kitchen and made 200 more truffles to share with the congregation at kiddush this coming Shabbat. I hope they're a big hit on Saturday as well!

By the way, I did NOT receive a fountain pen as a bat mitzvah gift. But I did get a clock/radio, very trendy electronics for the time (1972). I still have the Beatles songbook a friend gave me. I remember shopping for shoes to wear with the new dress. My feet were large, but I was only 13 years old. The only appropriate shoes for a girl with size 8 feet were dye-to-match low-heeled pumps. We had them dyed navy blue to match the dress and I sweated so much, the dye ran all over my toes.

November 19, 2008


Pumpkin has fleas. Or at least flea dander. I was late in applying his monthly dose of Zodiac Spot On and voila! Itchy, scratching dog. The vet prescribes washing all the bedding, vacuuming the furniture and rugs, and giving Pumpkin two Benadryl tablets twice a day until he stops scratching. (Evidently dogs take a larger dose of Benadryl per pound than people.)

Oh, the joys of pet ownership.....

November 15, 2008

Women, friendship and stress

I received this from a friend today. We might have known that friendship was keeping us healthy!


By Gale Berkowitz

A landmark UCLA study suggests friendships between women are special.

They shape who we are and who we are yet to be. They soothe our tumultuous inner world, fill the emotional gaps in our marriage, and help us remember who we really are. By the way, they may do even more.

Scientists now suspect that hanging out with our friends can actually counteract the kind of stomach-quivering stress most of us experience on a daily basis. A landmark UCLA study suggests that women respond to stress with a cascade of brain chemicals that cause us to make and maintain friendships with other women. It's a stunning find that has turned five decades of stress research---most of it on men---upside down. "Until this study was published, scientists generall y believed that when people experience stress, they trigger a hormonal cascade that revs the body to either stand and fight or flee as fast as possible," explains Laura Cousino Klein, Ph.D., now an Assistant Professor of Biobehavioral Health at Penn State University and one of the study's authors. "It's an ancient survival mechanism left over from the time we were chased across the planet by saber-toothed tigers.

Now the researchers suspect that women have a larger behavioral repertoire than just "fight or flight." "In fact," says Dr. Klein,"it seems that when the hormone oxytocin is released as part of the stress responses in a woman, it buffers the "fight or flight" response and encourages her to tend children and gather with other women instead. When she actually engages in this tending or befriending, studies suggest that more oxytocin is released, which further counters stress and produces a calming effect. This calming response does not occur in men", says Dr. Klein, " because testosterone---which men produce in high levels when they're under stress---seems to reduce the effects of oxytocin. Estrogen", she adds, "seems to enhance it."

The discovery that women respond to stress differently than men was made in a classic "aha!" moment shared by two women scientists who were talking one day in a lab at UCLA. "There was this joke that when the women who worked in the lab were stressed, they came in, cleaned the lab, had coffee, and bonded", says Dr. Klein. "When the men were stressed, they holed up somewhere on their own. I commented one day to fellow researcher Shelley Taylor that nearly 90% of the stress research is on males. I showed her the data from my lab, and the two of us knew instantly that we were onto something."

The women cleared their schedules and started meeting with one scientist after another from various research specialties. Very quickly, Drs. Klein and Taylor discovered that by not including women in stress researc h, scientists had made a huge mistake: The fact that women respond to stress differently than men has significant implications for our health.

It may take some time for new studies to reveal all the ways that oxytocin encourages us to care for children and hang out with other women, but the "tend and befriend" notion developed by Drs. Klein and Taylor may explain why women consistently outlive men. Study after study has found that social ties reduce our risk of disease by lowering blood pressure, heart rate, and cholesterol. "There's no doubt," says Dr. Klein, "that friends are helping us live." In one study, for example, researchers found that people who had no friends increased their risk of death over a 6-month period. In another study, those who had the most friends over a 9-year period cut their risk of death by more than 60%.

Friends are also helping us live better. The famed Nurses' Health Study from Harvard Medical School found that the more friends women had, the less likely they were to develop physical impairments as they aged, and the more likely they were to be leading a joyful life. In fact, the results were so significant, the researchers concluded, that not having close friends or confidantes was as detrimental to your health as smoking or carrying extra weight! And that's not all! When the researchers looked at how well the women functioned after the death of their spouse, they found that even in the face of this biggest stressor of all, those women who had a close friend confidante were more likely to survive the experience without any new physical impairments or permanent loss of vitality. Those without friends were not always so fortunate.

Yet if friends counter the stress that seems to swallow up so much of ou r life these days, if they keep us healthy and even add years to our life, why is it so hard to find time to be with them? That's a question that also troubles researcher Ruthellen Josselson, Ph.D., co-author of "Best Friends: The Pleasures and Perils of Girls' and Women's Friendships (Three Rivers Press, 1998). "Every time we get overly busy with work and family, the first thing we do is let go of friendships with other women," explains Dr. Josselson."We push them right to the back burner. That's really a mistake because women are such a source of strength to each other. We nurture one another. And we need to have unpressured space in which we can do the special kind of talk that women do when they're with other women. It's a very healing experience."

Taylor, S. E., Klein, L.C., Lewis, B. P., Gruenewald, T. L., Gurung, R. A. R., & Updegraff, J. A. “Female Responses to Stress: Tend and Befriend, Not Fight or Flight”

Happy birthday to me!

Today is my birthday. For weeks now, when someone asked my age, I said like a child, "I'm almost 49!" I imagine that most women my age don't thrill to the sound of adding another year to their age. But from my perspective of living with metastatic breast cancer and beating the odds for the past six years and (almost) three months, celebrating each new birthday is the only way to go.

I heartily recommend that on your next birthday, you gather with friends, pop open a bottle of bubbly, and make a toast to growing older. It's way better than the alternative.

November 14, 2008

Zometa again

Here's the rhythm of my days -- Yesterday it had been a month since I last had an infusion of zometa, the bone-strengthening drug I take every four weeks. One month ago I was in the hospital, recovering from a staph infection and cellulitis. Since I take this IV drug every four weeks, it has become one of the ways I measure my life. I could hardly believe it had been four weeks since everything turned upside-down for a few days.

How quickly things move on. We accumulate the trivia of our days without realizing how much time has passed.

The nurses apologized for saying that they look forward to seeing me again. I guess some people take it badly when they have to go to hospitals on a regular basis. My view is that these drugs are keeping me alive and well, so I told the nursing staff that I hope to be seeing them for many more months and years to come!

November 11, 2008

Veterans / Remembrance Day

My father z"l, was proud of his service during World War II. Here is his story --

Sheldon Charles Cohen enlisted at age 18 in January 1945. His mother went with him to the ferry to New Jersey and waved goodbye. He spent three days at Fort Dix, where he was issued a uniform and dog tags. The army sent his clothes back to his parents in the Bronx. He beat the army to the haircut and had already had his hair cut militarily short.

He then went to Florida for basic training for six weeks, where he learned to master peeling potatoes. He was given a seven day leave before shipping out, but it took 2 days to travel by troop train from Florida to New York City, so he only had 5 days of leave.

He sailed to Le Havre where he was posted to the Army Corps of Engineers. Because of his experience with his father's seltzer delivery business, he spent his service driving trucks, including a 22-wheel rig. He drove from Le Havre over the mountains and south to Rouen and Marseilles; to Belgium and Holland, where he saw the famous fields of tulips; into Germany; and went to England for a special job for Eisenhower. After that trip he was thrilled to be personally thanked by General Eisenhower. He saw the concentration camp in Strasbourg.

He once ran out of gas somewhere in France. Having learned a little bit of French, he hiked back to the closest village, where he made a telephone call. He said to the operator "Le militaire American." The operator didn’t understand his accent, so he repeated "Le militaire American." Eventually they connected him and the Army came by with more gas.

He attended an Army buddy's wedding to a French girl. At the dinner after the ceremony, they ate soup, a main dish, and served the salad at the end! He was very surprised by this custom.

His cousin Eva's daughter came to Europe on a war bride ship and looked for him in Le Havre, but he was posted to Paris at the time. So she gave his buddies all the fresh milk and fresh food she had access to, and they all got sick. They had very little fresh food and were used to eating mostly powdered, dehydrated and canned items.

The Germans had sunk a freighter in the harbor at Le Havre to prevent any more Americans from arriving. When the tide was in, you could only see a main pole. When the tide went out, you could see the whole ship.

He said something about being in the Army was the best two years of his life. He was a young man, he traveled to five countries. He never saw combat. He served his country. He was honorably discharged in 1947 because the Army needed his unit to clear the harbor at Le Havre after the war in Europe had ended.

Remembrance / Veterans Day: In Flanders Fields

Today is Veterans Day (in Canada, Remembrance Day). While we were in Vancouver this past weekend, we saw many people wearing red poppy pins to remember those who died to defend their country. This is a tradition Americans could emulate.

In Flanders Fields

By Lieutenant Colonel John McCrae, MD (1872-1918) of the Canadian Army

IN FLANDERS FIELDS the poppies blow
Between the crosses row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie
In Flanders fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders fields.

According to the Arlington National Cemetery website,
McCrae's "In Flanders Fields" remains to this day one of the most memorable war poems ever written. It is a lasting legacy of the terrible battle in the Ypres salient in the spring of 1915. Here is the story of the making of that poem:

Although he had been a doctor for years and had served in the South African War, it was impossible to get used to the suffering, the screams, and the blood here, and Major John McCrae had seen and heard enough in his dressing station to last him a lifetime.

As a surgeon attached to the 1st Field Artillery Brigade, Major McCrae, who had joined the McGill faculty in 1900 after graduating from the University of Toronto, had spent seventeen days treating injured men -- Canadians, British, Indians, French, and Germans -- in the Ypres salient.

It had been an ordeal that he had hardly thought possible. McCrae later wrote of it:

"I wish I could embody on paper some of the varied sensations of that seventeen days... Seventeen days of Hades! At the end of the first day if anyone had told us we had to spend seventeen days there, we would have folded our hands and said it could not have been done."

One death particularly affected McCrae. A young friend and former student, Lieut. Alexis Helmer of Ottawa, had been killed by a shell burst on 2 May 1915. Lieutenant Helmer was buried later that day in the little cemetery outside McCrae's dressing station, and McCrae had performed the funeral ceremony in the absence of the chaplain.

The next day, sitting on the back of an ambulance parked near the dressing station beside the Canal de l'Yser, just a few hundred yards north of Ypres, McCrae vented his anguish by composing a poem. The major was no stranger to writing, having authored several medical texts besides dabbling in poetry.

In the nearby cemetery, McCrae could see the wild poppies that sprang up in the ditches in that part of Europe, and he spent twenty minutes of precious rest time scribbling fifteen lines of verse in a notebook.

A young soldier watched him write it. Cyril Allinson, a twenty-two year old sergeant-major, was delivering mail that day when he spotted McCrae. The major looked up as Allinson approached, then went on writing while the sergeant-major stood there quietly. "His face was very tired but calm as we wrote," Allinson recalled. "He looked around from time to time, his eyes straying to Helmer's grave."

When McCrae finished five minutes later, he took his mail from Allinson and, without saying a word, handed his pad to the young NCO. Allinson was moved by what he read:

"The poem was exactly an exact description of the scene in front of us both. He used the word blow in that line because the poppies actually were being blown that morning by a gentle east wind. It never occurred to me at that time that it would ever be published. It seemed to me just an exact description of the scene."

In fact, it was very nearly not published. Dissatisfied with it, McCrae tossed the poem away, but a fellow officer retrieved it and sent it to newspapers in England. The Spectator, in London, rejected it, but Punch published it on 8 December 1915.

Best breakfast in Seattle

With school closed today for Veteran's Day, we followed a lead on a great breakfast place (thanks G!), Voula's Offshore Cafe on Northlake under the Aurora Avenue bridge. Rik had pancakes with "Greek sausage" (gyros) and I had a Greek Hobo -- hash browns, scrambled eggs, onions, mushrooms and gyros all fried up together. Incredibly filling and delicious! I could only finish half.

I thought the coffee from Tony's Organic Coffees was good, but Rik didn't care for it as much. Fresh-squeezed orange juice was a treat.

You can watch a video on You Tube of how they make their specialties here.

November 10, 2008

Montreal-style bagels

What is a Montreal-style bagel? Well, you can't buy them in Seattle, that's for sure!

Wikipedia says:
In contrast to the New York-style bagel, the Montreal bagel is smaller, sweeter and denser, with a larger hole, and is always baked in a wood-fired oven. It contains malt, egg, and no salt and is boiled in honey-sweetened water before being baked in a wood-fired oven, whose irregular flames give it a dappled light-and-dark surface colour. There are two predominant varieties: black-seed (poppyseed), or white-seed (sesame seed).

If they sit for more than 24 hours, they turn into hockey pucks....but they are delicious and they do freeze well for later toasting and enjoyment!

(Rik points out that a New York Times food critic once said Montreal style bagels beat New York bagels hands down. I couldn't find that quote, but here is a review of St-Viateur's in Montreal that I must agree with.)

Best Bagels: Montréal's bagels are clearly superior to versions produced south of the border, and St-Viateur Bagel & Café, at 1127 av. Mont-Royal est, near rue La Roche (tel. 514/528-6361), is the place to assess that claim.

(My mother-in-law says that this is a cafe, the bagels are baked at 138 Saint-Viateur West.)

O Canada

We spent a lovely weekend in Vancouver British Columbia. Between visiting family (both sides) and friends, attending a bar mitzvah, and eating ourselves silly, it was great to be in Canada again.

We ate Shabbat dinner with Rik's aunt and uncle in Richmond and arrived at the hotel around 9:30 PM. On this visit we stayed at the Granville Island Hotel, a charming (and pet-friendly) inn on trendy Granville Island. The room was small but the bed was comfy, and you can't beat the location.

The bar mitzvah took place at Ahavat Olam Synagogue, which meets in the Peretz Centre for Secular Jewish Culture. This congregation has written it's own prayerbook based on the one used by the Reconstructionist movement. Since Rik was raised in a Reconstructionist congregation in Montreal, it felt more familiar to him. Aside from the rabbi and president of the shul, we appeared to be the only people wearing a tallit. This of course drew the attention of the rabbi. We sat together at lunch and it turns out he studied with my former boss, Rabbi Bob Saks. What a small world it is when you play Jewish geography!

The service seemed geared to the more than half of those present who were not Jewish. The rabbi offered much explanation and commentary. His pacing of the service was also very slow compared to what we are used to. The service lasted for three hours -- even longer than at our Beth Shalom!

L, the bar mitzvah boy, son of our close friends S and I, did a wonderful job. A year ago he didn't know aleph from bet but he said he wanted to have a bar mitzvah. Given that he is the child of an unaffiliated Jewish mother and a secular father, and not raised with any particular religion, his request took everyone by surprise. L studied hard, learned a lot, attended services regularly, and has made a Jewish home for himself in this congregation.

During the afternoon we walked around Granville Island and relaxed at the hotel. For dinner I really wanted to have poutine, that yummy Quebecois dish I learned to love while in Montreal a couple of years ago which is hard to find in the USA. It's not kosher, but boy is it delicious if you like salt and fat! Imagine skinny, Belgian, ultra crisp fried potatoes covered in cheese curds and brown gravy. So good!

We ate at Crave on Main, a tiny (14 tables; we counted), trendy (30 minute wait) neighborhood place. After dinner we visited with the bar mitzvah boy and his family.

On Sunday we met my cousins on Granville Island for brunch and a walk through the market. It's a lot like Seattle's Pike Place market, but enclosed under one roof. Fresh produce vendors, meat and cheese purveyors, bakeries, and any number of places to eat or drink sit cheek-by-jowl with a few crafts vendors. (The rest of Granville Island is filled with art galleries.) Rik brought home four dozen Montreal-style bagels from Siegel's, we each had a fabulous chocolate truffle, and then we got in the car to go home.

We waited 2.5 hours to get through the border (oy!). Going to Canada is fun; coming home, not so much sometimes.

November 05, 2008

Health update

Still sticking the mupirocin antibiotic ointment (brand name Bactroban) up my nostrils twice a day to keep the staph infection from a few weeks ago from coming back. Rik is going to take the same treatment to prevent us from passing it back and forth.

I saw the dermatologist (who looks an awful lot like my first cousin, 30 years ago). He examined my many moles and pronounced me clear for another year.

My body has been covered with moles my whole life. Last year during my family doc's annual exam, she found something potentially suspicious. She gave me a referral to a dermatologist. He removed the potentially suspicious mole and had it biopsied. Turned out to be nothing, but you never know. Now I have another doc to add to my roster of health care professionals, and this one I have to see annually.

How many providers do I have?

Primary care physician
Radiation Oncologist
Infectious Disease Specialist (2!)
Oral Surgeon

Plus --
Oncology Social Worker (2)
Infusion Nurses (the same three for the past 6 years)
Compression Garment provider (2)
Physical Therapist specializing in manual lymphatic drainage (many over the past 9 years)
Dental hygienist

If you live in the Seattle area and want a recommendation on a provider, I think my health care team is THE BEST!

Or chadash

Today I went to morning minyan to celebrate the election of the nation's first African-American president, Barack Obama. We all sung the following line joyously:

Or chadash al Tzion ta-ir venizkeh chulanu meheyrah l-oro
Cause a new light to illumine Zion

May President-elect Obama and our country go from strength to strength!

October 31, 2008

Q13 Fox Series Part Four: Early Diagnosis Is The Key

Angela King, Q13FOX News

October 31, 2008

Breast cancer can kill. Every year, it does - more than 40,000 in 2008.

And if it doesn't conquer you, Katie Hogan says," I like a radio that's on in your head all the time that you can never turn off, and the best that you can hope for is try to turn down the volume as much as you can to give yourself a break."

But what about your children?

"How do I talk to her? How do I explain what's happening to me without scaring her?" says Nicole Taylor. Of all the distractions - the dark moments - this is the most difficult. Just ask Anna Schumacher.

"You stop fearing for your life. You start fearing your child is going to grow up without a mother."

It's a revelation Niicole knows all too well. She lost her mother to a brain tumor at age six. Now, a dose of déjà vu, except this time, it's Nicole's turn to be the calming force.

"We get these difficult questions from our kids: is your cancer never coming back or are you cured mommy? It's a difficult answer because the truth is we don't know."

But while questions are Nicole's quandry - confirmation is Courtney Preusse's heartbreak.

"The increase in estrogen that would be created by a pregnancy would make the cancer come back without a doubt," says Courtney.

This has not been an easy conclusion for Courtney to accept. She wants to have children and she could chance it.

"So that's where my mind toys with my heart and i think maybe it won't come back," says Courtney.
And that's where Andrew comes in. He says," It doesn't do anything for me to gain a child and lose my wife."

"If I bring a child into this world and I die five years later - it's a fact. I've been to my friends' funerals. Women my age die," says Courtney.

But the option of surrogacy is breathing new life, into the Preusse's dream of becoming three.

For those still fortunate enough to have children, cancer still has it's repercussions and it's questions.

Nicole once asked, "How do I get my son in his car seat when I'm not supposed to lift five pounds for six weeks after surgery. These women said 'jelly beans'. That's what worked. I had a pocket full of jelly beans for a year and a half and that's what got him in and out of his car seat."

So It's the little things, and each other, that help these young survivors get through. For Anna, it's the love of her little one.

"He shaved his head when my hair started coming out last week. He thought if mom's going to have a shaved head, then I have to have a shaved head. Then he also put my lipstick on, and I'm like -- we got to start slowing this down!"

And these ladies are in no mood to rush the moment. Family means so much.

"These wonderful milestones that other people take for granted," says Anna.

And yes - cancer has taken many lives and too many friends. It kills. It can crush your spirit and consume your every thought. But if there ever was a case study in love and support --the perfect example of what it means to be there for someone -- cancer's not the conqueror. These women are.

Members of the Young Survival Coalition and the Northwest Young Women Survivors say early diagnosis is the key. They urge women (men too) to perform those self examinations regularly, and have those mammograms.

Q13 Fox Series Part Three: Breast Cancer: Taking A Toll On Your Body.

Angela King, Q13FOX News

October 31, 2008

October is National Breast Cancer Awareness month. Each year, more than 11,000 women under the age of 40 are diagnosed with the disease.

All month, we've been introducing you to an extraordinary group of young breast cancer survivors.
They are members of the Young Survival Coalition and the Northwest Young Women Survivors. Each one lives in the Seattle area. All are tied together by common hopes and fears.

In Part I of our four part series, we met members who are suffering from the final and worst phase of breast cancer - Stage 4 metastatic. In Part II - it was women who have streamlined their professional lives to help fellow survivors.

This time, we discuss a topic all of these young survivors can relate to - the toll the disease takes on your body, and how to deal with what you look like after chemo or a mastectomy:

"The day I was diagnosed, I didn't believe I would be here."

It's been said cancer is one of the scariest words in the English language, especially if it runs in your family.

"On my mother's side, I'm the fourth generation to have breast cancer. My father's side, I'm the third generation," says Beth Morris.

But what if you don't run that risk.

Nicole Taylor says,"There's only 20 percent that's actually genetic so 80 percent of women do not have a genetic history."

And with most women being diagnosed well after their 40th birthday - another warning: youth doesn't always work in a woman's favor. Just ask Tammy Tillingham.

"The doctor told me I had a benign tumor. She said I was too young, so I actually waited a year until I went back and it had grown from three centimeters to nine."

"I think if I would have been monitored since age 30, I'd only be stage one instead of stage 3 where it's in my lymph nodes," Nicole says.

These are some of the worst "what if's" any woman could contemplate. How different would my chances be had I been diagnosed sooner? How nice it would be to have my body back the way it was.

"I didn't have reconstructive surgery, so every time i look in the mirror I see scars. I'm lopsided. It's difficult sometimes, but what can you do," says Tammy.

And what do you do if *you* are only part of the equation?

"Whether you're dating, you're married or you're breaking up, because that often happens through cancer treatment," says Anna Schumacher - a breast cancer survivor.

Heather MacMillan says," I had that moment on the couch like, how can i ever hold onto this? And of course, my husband looked at me and said, 'Are you crazy!' "

But what if you don't already have that steady partner by your side?

"I think all the women who are single and have gone through this have some fear," says Beth
Anna agrees. "Little things like, do I tell them in the beginning that I've had breast cancer or that I've had a lumpectomy or mastectomy? What do i tell them? Do I wait? What will happen?"

But there's no question - these are pros when it comes to optimism. Just leave it to these ladies to find purpose in one of the most devastating disfigurements a woman can suffer.

Beth is already married, but she says other survivors, "have found it to be a really good way to test the mettle of the men they've dated. It's helped them get down to brass tacks very quickly and extract themselves from the ones they're not going to have a future with."

And these women know what a gift the future is. The "what if's" here are not necessarily fraught with fear thanks to family, friends, and each other. It's funny how things can sometimes add up.

"It's like you're a transformer," says Anna.

Beth says her daughter thinks her scar is entertaining.

"My son thinks women with two breasts are really weird, so he's going to be very disappointed," says Anna.

But disappoint - these women don't.

Next week, we will bring you the fourth and final part of our special series. The topic - how do you break the news to your children, and keep your family calm while you're trying to do the same.

Q13 Fox Series Part Two: Life Continues On...

Transcription of the second interview Q13 Fox did of young breast cancer survivors --

Angela King, Q13FOX News

October 24, 2008

What do you do when you learn your life will never be the same?

"Within two hours, I knew I had breast cancer. They told me right then," says Nicole Taylor.

Every three minutes, a woman will face that very moment.

Carrie Sieberg says," You can picture the room, the doctor. You can picture everything. I don't think I'll ever forget that. It was horrible. It was horrible.

Washington state has the highest rate of breast cancer in the country. While mastectomies and chemotherapy are not always required, there's no way to get around the initial fear.

Carrie says, "We're the only ones who really get it."

But to get it while your in your 30's like Carrie and Nicole is not the norm. Most women won't be diagnosed until well after their 40th birthday.

"We have to deal with what older women don't have to deal with. Maybe they have a husband who's retired or grown children who can take care of them. For me and a lot of women, we still have to work," says Debbie Cantwell, a breast cancer survivor.

"I cleaned toilets when I was going through chemo," says Debbie.

Carrie had to continue on too. She's a physical therapist. Nicole was diagnosed when she was a kindergarten teacher. But just as that day they were diagnosed - a change. Simply working to pay the bills was no longer enough.

"I knew I wanted to do something for the cause. Something for the heartache, the anxiety, and the anger of watching so many of us being diagnosed and losing 18 friends in the past two years to breast cancer all under the age of 45," says breast cancer survivor Nicole Taylor.

So now Nicole works at Susan G. Komen For The Cure. It's the world's largest network of cancer survivors and a leading supporter of breast cancer research. Carrie is still a physical therapist, although her focus now is helping fellow survivors feel better.

Carrie says," Women feel like pain is part of the deal."

Patients in recovery often suffer from tightness and scarring following breast cancer operations. Muscles can be weakened by the radiation.

Things like Chemo - that you leave feeling worse. But when you leave physical therapy, you feel better and they're aren't a lot of places you can go when you have cancer where you can leave feeling better," says Carrie.

As for Debbie - she's feeling much better now. She's still not a big fan of housework. But the copyrighter by profession has made compassion her expertise.

"I've sent fully prepared meals to families so when they come home from the hospital it's easier."

Debbie is the founder of Breast Cancer - a charity helping survivors with day-to-day living when the daily discomforts of cancer make it difficult to do basic chores.

Debbie says, "I have to help these women ... I have to do something ... I have to make life easier."

And life continues on - not the way these women planned, but what else can you do? They can hope and help those who've yet to make it through - the women worried about today and the uncertainty that accompanies tomorrow.

And who better to guide them or to understand their fears than the one's who have been there, and who are still here.

"I'm just grateful I went through the experience and came out the other side doing alright," says Debbie.

Q13 Fox Series Part One: Young Breast Cancer Survivors Tell Q13 FOX Their Personal Stories

Q13 Fox News Online Staff

October 17, 2008

October is National Breast Cancer Awareness month.

According to the Young Survivor Coalition more than a quarter-million American women under the age of 40 are living with breast cancer.
And each year, more than 11,000 women under the age of 40 will have to face the devastating diagnosis.

Over the next few weeks, Q13 FOX is introducing you to an extraordinary group of young breast cancer survivors, all from the Seattle area, and all tied together by common hopes and fears.
More than 4,000 women in our state will be diagnosed with breast cancer this year. Nearly 800 of them will die.

Jill Cohen, breast cancer survivor recalls, “It took me months to get used to the fact that my cancer had come back and it was everywhere. In my bones .. from my skull all the way down to my knees.”

Jill Cohen has stage four, metastatic. Jill says, “having stage four disease is like having a merry-go-round where you're always on it. Sometimes you're on the pony going up. Sometimes you're on the bench hanging out but you never get off.”

Jill, along with Katie Hogan and Kristen Haugen, are holding on. In fact, they're living. Thanks in part to a life-line ... on-line -- the Young Survival Coalition and the Northwest Young Survivors who meet twice a month at Gilda's club on Capitol Hill.

Katie says, “we finally get to meet women in the same age group ...with the same condition because sometimes it's less common for young women to advance into metastatic.”
Seattle has the highest rate of breast cancer in the country, the entire state ranks third.

Katie says, “we represent the dark side because we are in the place that women don't want to find themselves.”

Jill adds, “but when the sun is shining ... You can forget for a few minutes that you have this thing growing inside your body.”

The women have been kind enough to open up ... They 'are' complicated ones ... and not just because of the disease but what about motherhood? What their bodies look like after surgeries ... and how that affects their psyche ... their husbands - how do they bring the subject up?
They'll tell you first hand throughout the month

Next Friday, we'll take a look at how some of these ladies are helping each other through their careers and work.

Done with drugs

Yesterday I finished the two week stint of intravenous antibiotics, which I self-administered through my port-a-cath. No more staying up until midnight, waking up early and being home at 4 PM just in order to shoot myself up.

Actually, as these things go, it was rather uneventful. My port stayed accessed, limited discomfort there. The antibiotics gave me some loose stools but thankfully the pain meds are constipating, so they kind of evened each other out.

The home health care nurse came by at 8:15 AM to de-access my port, and was able to take back some paper and styrofoam boxes to be re-used. Since according to federal law, medical supplies cannot be returned to the provider after being dispensed to the patient, I would like to donate the sealed medical supplies to a medical charity doing work overseas. Any leads?

October 28, 2008

2 weeks with the port accessed

Today is the two week mark for my port being accessed. The home care nurse is supposed to come over today to de-access it and then re-access it for the remaining few days I need to take IV antibiotics. I gather that the protocol is not to leave a port-a-cath accessed for longer than 14 days. Thankfully Swedish Home Health Care sent along lidocaine so that any pain could be minimized.

It's been a royal pain in the patoot to administer the IV antibiotic every 8 hours. Since I prefer to stay up late rather than wake up early, I've been on the 8 AM - 4 PM - midnight schedule. But staying up until midnight has it's own risks and it turns out to be hard to wake up in time to give myself the 8 AM dose. I've become a fan of late night TV (Frasier, Family Guy, Sex and the CIty when I can find it). It helps keep me awake. The other night I fell asleep on the couch and woke up at 12:15 AM with the certain notion that I had forgotten to do something.

I hope more or less on time is more or less okay.

October 25, 2008

Q13 Fox series on young women with breast cancer

You may recall that a few weeks ago I was part of a series on Q13 Fox about young women with breast cancer. Q13 continues to air more segments; there will be four total.

If you click on Q13 Fox's home page, you'll see a video box. Search breast cancer or scroll through the video titles for "Young Women Coping With Breast Cancer Part 3."

October 22, 2008

The unexpected hospital stay, day 3

After being woken at 5 AM for another dose of antibiotics, I was able to get back to sleep. Then the usual -- shower, breakfast, clean clothes and lots of time on my hands with nothing to do. I was REALLY bored Thursday until the afternoon, when I the second parade of people began, this time of doctors.

The hospitalist who admitted me on Tuesday had handed me off to her colleague for the rest of my stay. What is a hospitalist? One site defines it as follows --

A hospitalist is a medical specialist who provides quality medical treatment to individuals while they are in the hospital. Because hospitalists don’t maintain a private outside practice, their time is devoted solely to caring for hospitalized patients.

Hospitalists are based in the hospital and specialize in all aspects of a patient's care - from admission until discharge. To do this, hospitalists manage and coordinate the entire inpatient episode of care, working closely with the patient's primary care physician and/or specialists involved.

Not only do hospitalists offer the patient on-site and around-the-clock access to a physician, but also afford themselves an in-depth understanding of and commitment to, individual patient needs. Hospitalists are also familiar with key departments and individuals within the hospital, allowing for prompt connections with other healthcare personnel.

So. The second hospitalist had warned me on Wednesday that I would be staying another night. On Thursday I saw the infectious disease specialist she had called in on my case. He said I could go home that afternoon but would need to continue intravenous antibiotics for two more weeks. Well, that was fine with me if it meant I could sleep in my own bed next to my husband with my dog curled up at our feet. I was discharged around 6 PM with several prescriptions and a lead to Swedish Home Health Care, who would provide the IV therapy at home.

I wish I could say that my discharge was as smooth as my admission. Unfortunately the whole thing ended on a sour note. We packed up all my stuff and stopped at the pharmacy on the way out. It was almost 6:30 PM, I was looking forward to breathing some fresh air and Rik and I were both hungry. The pharmacy stop should have been quick and easy. But the clerk couldn't find my prescription (called in an hour earlier). Then she wanted me to wait 30 minutes while the pharmacist made it up. It's a tube of ointment in a box, what's to make up? I asked if I could transfer the prescription to a pharmacy closer to home. Sure, says the surly clerk. Just have the pharmacy call us. This woman was not terribly interested in customer service and my fuse was a little short. We made the call, the Rite-Aid near us was happy to help, and we left. Fresh air at last!

After a quick dinner out, we stopped at the drugstore to pick up the prescription. Bonus! Because I had transferred the prescription to them, I received a $30 voucher good on any merchandise in the store (except prescriptions, but what can you do?). At 8 PM we were home and by 9:30 I was in bed snoozing. Three very long days.....

The unexpected hospital stay, day 2 continued

The rest of the morning was slow. I watched part of a movie, read my book, looked out the window. I couldn't go for a walk down the hallway because I was in isolation due to the staph infection. However, the afternoon was a constant parade of visitors. A and A, G and her daughter R, C, then Rik. It was lovely to be able to visit with people, to take my mind off the infection, and to not be bored out of my gourd.

Rik got us both some dinner from The Mediterranean Kitchen, one of my favorite places on Broadway. And after dinner members of Dunava, my choir, came over to sing. You should have seen the four women clad in yellow isolation gowns and trying to turn pages of music while wearing rubber gloves. We closed the door and tried to sing quietly. Our leader Dina asked us each to choose favorite songs to sing and M brought cupcakes from Trophy for our snack. Despite the room's terrible acoustics, we were able to hear one another clearly. It was a delightful evening for me and I am so grateful that they were willing to bring our rehearsal to the hospital so I could participate.

After the Dunavites left I watched the rest of The Phantom of the Opera (a much better film than stage show in my opinion) and fell asleep around 11:30.

The unexpected hospital stay, day 2

On Wednesday morning I got up and ordered breakfast, saw a nurse, met the pharmacist, and even got to take a shower and wear my own clothes! There's little I hate more than being stuck in a hospital gown, even though I had asked for pajamas, which were promptly supplied. In my experience, women are hardly ever offered pj's while in the hospital. Who cares if they are sizes too big and inches too long? Pajamas do a better job of covering your butt than open-backed gowns.

Speaking of the pharmacist. I take a number of prescription meds and had the presence of mind to ask Rik to bring the original containers to me. On Tuesday night, a nurse offered me Zocor, a drug I do not take. So I refused to take it. I did take all my regular meds from my own bottles. The next morning the pharmacist explained that hospital practice was to dispense meds to patients from the in-house pharmacy and would I go with the flow, so to speak. I told him about the Zocor mixup and he told me it was their substitute for another drug I take that Swedish doesn't stock. (Why hadn't anyone told ME this?) Well, I didn't see any reason to try a new drug with unknown side effects for only a few days, so I told him I'd rather take my own.

Then the pharmacist told me that the nurse would have to dispense any drugs I take and watch me take them. The nurses would observe that I was taking lovastatin from my own supply and double check the bottle. I asked about pain meds. I had a low fever the day before and it took 90 minutes to get some tylenol for a headache. We negotiated that I would ask the nurse for pain meds if I needed them and that I would wait a more reasonable 20-30 minutes for someone to bring it to me. If it took longer, I had his permission to take from my own supply.

Oy. All this before breakfast!

The unexpected hospital stay, day 1

I think I posted that last Tuesday at 2:30 I saw the physical therapist, who told me to call my doctor; at 3:30 I saw my doctor (who graciously squeezed me in between previously scheduled patients); and by 4:15 PM I was in an isolation room at Swedish Medical Center. That's the way our health care system is supposed to work. When you get sick, all the players and pieces work together to get you the care you need.

It took several hours after my admission to the hospital to actually get my port accessed and start getting the intravenous antibiotics. From 4:15 PM to 9 PM, to be precise. Given the five hour wait, I am glad that I wasn't sicker, although I would imagine that if I had had a sudden collapse they would have speeded up the process. I actually got to eat dinner with Rik (oh that yummy hospital food!).

While waiting, I made numerous phone calls to find someone to take care of the dog. I guess because it was the middle of the afternoon, no one was answering their phones. Rik had taken the bus home and he fed and walked Pumpkin, reached our friends the G's to see if they could watch the dog in the evening, and found someone to drive him to the hospital. (I had the car. Not only did I have the car, when I parked it in the hospital parking garage, I carefully noted where I had parked and wrote directions on how to find the car for him. Am I organized or what?)

So RIk and I ate dinner together, and my friend D dropped my for a visit. We chatted until almost 10 PM, she left me a DVD to watch, and I went to sleep. End of day one.

Home antibiotic update

I have been feeling fine and "shooting" myself up with intravenous antibiotics every 8 hours through my port since last Friday night. It's going well, although unfortunately antibiotics continue to produce their usual side effect of loose stools/diarrhea. Thankfully my pain meds have a constipating effect, so I am able to minimize the impact.

Every 8 hours for me means that I don't want to get up at the crack of dawn, so I stay up late -- 8 AM, 4 PM, midnight. It's definitely interfering with my sleep!

We had a very busy weekend, what with our annual sukkah party on Saturday afternoon, a 75th birthday party for Rik's "other" mother S, overnight house guests, a trip to the airport and the ever-present antibiotics.

October 17, 2008


I am home now after spending the past three days at Swedish Medical Center inpatient with a staph infection. It will take at least two more weeks of IV antibiotics to clear and we don't know if it entered my body through my portocath or another way.

The infection showed up Tuesday in the wee hours as hot, red, tender blotches on my lymphedema arm. At 2:30 PM I went to the physical therapist, who recommended I see my primary care doc. At 3:30 PM Dr. K said "I remember what happened last time*. This looks like cellulitis, so let's admit you to the hospital. No, you may not drive home and get Rik. Your job is to get yourself up to the hospital right away." By 4 PM I was walking in the door to Swedish and by 4:15 they had me in an isolation room. I was hooked up to IV antibiotics by 9 PM and discharged Thursday at 6 PM. defines cellulitis as follows:

"Cellulitis (sel-u-LI-tis) is a common, potentially serious bacterial skin infection. Cellulitis appears as a swollen, red area of skin that feels hot and tender, and it may spread rapidly.

Skin on lower legs is most commonly affected, though cellulitis can occur anywhere on your body or face. Infections on the face are more common in children and older adults. Cellulitis may affect only your skin's surface — or, cellulitis may also affect tissues underlying your skin and can spread to your lymph nodes and bloodstream.

Left untreated, the spreading infection may rapidly turn life-threatening. That's why it's important to seek immediate medical attention if cellulitis symptoms occur."

I will post more as time permits and I get caught up with the rest of my life.

*BTW, the last time means after my lumpectomy in 1999 when the surgical drain left in my axilla (armpit) became infected and developed into toxic shock syndrome. Luckily it was identified by an infectious disease specialist just as it became life-threatening. So you can see why my health care providers take the risk of infection seriously.

October 13, 2008

Metastatic Breast Cancer Awareness Day

Last year the Metastatic Breast Cancer Network declared October 13 to be Metastatic Breast Cancer Awareness Day. (I'm not sure why, but why not?) In the past year they have had a number of cities around the country join on.

In that spirit, here are some statistics I found on metastatic breast cancer --

• No one tracks how many US women live with metastatic breast cancer.

• The American Cancer Society says that 27% of female breast cancer diagnoses are stage IV (metastatic) disease. (source)

• The five year survival rate for women diagnosed with metastatic disease is 27%. (source)

• National Cancer Institute (NCI) research for breast cancer has been flat or reduced since 2003 (source)

• Only 29% of all NCI breast cancer research goes toward treatment. (79% goes toward everything else – prevention, early detection, causes, biology, survivorship) (source)

• As of 2006, of the roughly $5 billion NCI funding, only 1% goes into research pertaining to metastasis of any kind, much less breast cancer metastasis. (source)

• NCI projects 40,080 women will die of breast cancer in 2008, and that 450 men will die of breast cancer in 2008. (source)

Cancer trump card

My friend W also blogs about living with metastatic breast cancer on The ABC Cancer Diaries. Like my blog, hers is mostly for family and friends. She gave me permission to use the cancer trump card she created. Here is what W has to say about it --

"What IS a Cancer Trump Card (CTC) you ask?

It’s that card that makes everything okay, that trumps everything because — well, I’ve got cancer. That simple, no explanation needed. All the little annoyances of life — like waiting on line, or having to stand in the subway during rush hour or wait extra long for that darn G train.
Although life isn’t fair, (I learned that one years ago, see exhibit A — me having breast cancer at 33 years of age), sometimes you just wish that when you have a life-threatening illness for seemingly no reason (other than my genes) that you can just have some other things a little easier.
I guess it’s sort of like having my own personal cancer genie. You know — the toilet overflows and you’re on your way out and you’re running late. ***POOF*** I just wave my CTC and like magic it’s fixed!!

But, oh no. Life just doesn’t work like that. Instead of things getting easier, they just get more and more complicated.

Well, I don’t really need a CTC, since I am doing just fine, though some days are better than some. But just for fun, it might be fun to make one just at that moment when things start to get a wee bit hairy.


October 10, 2008

Things people say to cancer patients

I hope you find this as funny as I did. A friend found it on the internet....

Things people say to cancer patients

(Get ready...)

"It might turn out to be a blessing in disguise."

Really? It's a freaking BRILLIANT disguise then. Because right now this blessing looks a lot like the second leading cause of death in the world today.

"We could all get killed crossing the street tomorrow -- you never know."
I agree that we have no idea how long we've got. But I'm pretty sure that cancer is a little more life threatening than crossing the street. Which would you rather face when you wake up tomorrow? Cancer or crossing the street ten times? I thought so.

"Breast cancer? It's a good one to get I've heard -- one of the better ones."
Good. Then let's hope you get it too. This is like telling you that it's good that it was your youngest son who got permanently disfigured because you liked him the least! Yes, there are worse cancers. But there are no good cancers.

"You'll be a better person for having gone through this."
Which means I'm an arsehole right now does it? I was actually quite happy being a cancer-free arsehole, thank you very much.

"You could step off the curb tomorrow and get hit by a bus."
Not a good analogy, it's like I already got hit by the bus and now its backing up over me.

"You gotta think positively."
OK, I'm positive I had cancer, and I'm positive it wasn't fun.

"You'll be fine."

"So, you're fine now, right?"

"My grandmother died of that."

"God gives you what you can handle."

"Can I see what is going on under that hat?"

"If anyone can beat it, it's you."

"If it's not your time, it's not your time."

Then why bother with the surgery and treatment?

"Life is not fair."
Thanks for the heads up.

"Every cloud has a silver lining."

"It's just a bump in the road."
Living with a cancer diagnosis, losing your hair, getting chemo, radiation, gaining weight, having hot flashes, being depressed and anxious is not a bump in the road -- it's a major mountain.

"Don't worry."

"You're lucky you didn't lose weight on chemo."

"Remember Lance."

"You gotta be like Lance."

"Lance beat cancer."

"Just look at Lance."

"You look good bald."

"So, was the cancer bad?"

No, I had the good kind, remember?

"This is a treatable disease."
Have they found a treatment for your insensitivity yet?

"It's just hair."
It's only "just hair" when it's not yours.

"You know you can eat (fill in the blank), it's supposed to kill cancer cells."
Great tip, thanks.

"You'll be fine, you have a great attitude."
If attitude really matters then why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer is lousy. What does that mean?

"If you really want to live, you will. Just never give up. When people give up, they die."

"How do you know if it's working?"
If it doesn't work, I die.