Lit those candles...

Today is the last day of Chanukah. We have had a busy holiday indeed! We began and ended with dinner with friends. In between Seattle was hit with a HUGE storm causing power outages for almost a week; I had a bone scan; Shira came back from Israel; and we went to visit friends on Harstine Island.

Thankfully we only lost power for 24 hours. Instead of sitting in a cold, dark house, we went over to friends and hung out there all day. Around dinnertime we called our neighbors and they reported power back on our block. So we came home to a warm, lit house after all. But our friends on Mercer Island were without power for almost a week. They joined us for a latke fest and a home screening of "Bride & Prejudice" one night and we all went out for dinner together the next night. They have a gas hot water tank and gas cooktop, so they were able to shower and eat hot food -- all things that help make being in the cold tolerable.

Our elderly neigbors didin't fare as well. A tree came down and took with it the power line to their house, so they were cold and dark till last night. They would not come over to stay with us, but Rik took them hot coffee the next morning.

It makes you think how close we all live to the edge -- if we go 24 hours without power our food spoils, our homes are too cold for comfort, and we sit in the dark. Rik and I have reconfigured our emergency supplies again and will be sure to include items in our cars as well as in our home.

I get the bone scan results next week, but it was a regularly scheduled exam. Shira arrived safely bearing many gifts from Israel: a DVD of a favorite movie called "Halahakah" (The Troupe) which is kind of like an Israeli musical M*A*S*H, plus more Armenian pottery tiles, Ahava facial scrub, and za'atar (hyssop) tea. Our friends on Harstine Island welcomed us to their beautiful home in the woods. We went for a long walk in the rain, ate like kings, and even tasted 7 different kinds of single malt scotch!

Last night we concluded Chanukah with friends, more latkes, and lots of candles. You gotta love a holiday where the designated food is fried potatoes!

Raising More Money

Yesterday culminated months of work for my synagogue -- we raised $112,000 for our operating budget! The room was colorful and crowded, the food tasty, the film moving and the program went smoothly, starting and ending on time. I was the keynote speaker and got to tell my story about how being rediagnosed with cancer helped me find community.

Here's what I said:

Good morning. My name is Jill Cohen, and this is my Beth Shalom story.

Four years, three months and 13 days ago, on the day I got the news that my breast cancer had returned and spread to my bones, I went home on crutches, lost my balance, fell and broke my leg.

It takes a long time to recover from a pathological fracture. Almost five months went by before I was able to put enough weight on my injured leg and walk with a cane.

I was overwhelmed by my cancer’s spread to more than 20 sites of bony metastases in the back of my skull, my sternum, my spine, my humerii and my femurs. The drugs I take to control my cancer put me into early, and permanent, menopause. I had three surgeries. I had radiation in five places.

I experienced significant losses. At age 42, I had to retire on medical disability from my career in the Jewish community. I tried to accept that cancer had finally cheated my husband and I out of ever becoming parents. I cried buckets of tears with Rik, with family, and with friends.

But I had help from an unexpected source – the members of Beth Shalom.

I had not been a frequent shul-goer. At one time I was involved with the Keruv Committee to reach out to new members, but that was it. Still, something had drawn me to Beth Shalom and I became a member.

It didn’t matter that I wasn’t active. Rabbi Z encouraged me to write for 15 minutes a day, to help me find meaning in my cancer experience. Rabbi G assured me that I wasn’t alone in suffering. Mitzvah Corps volunteers fed us three times a week for months and drove me to doctor’s appointments and to daily radiation treatments.

But my epiphany came on Rosh Hashanah, just after I broke my leg. I didn’t feel ready to go out in public yet. Harvey N offered to come over and blow the shofar. People from Beth Shalom and other friends filled our home to capacity with folding chairs, prayer books and food. I was lying on the couch, watching the hubbub, when I realized that I had been given a glimpse into the future. This is what my shivah minyan would be like: community and friends, giving support in a time of need.

I knew that I had to give to this community that had given me so much.

Once I was mobile, I began to attend Shabbat morning services. They gave structure to my week. Our connection to the Divine is evident in every beautiful note we sing together.

Steve P asked me to serve on the board, and I said yes, if he would let me try to raise money for the shul my way. So far it seems to be working!

And I always offer to make a meal when the Mitzvah Corps calls.

Involvement in our synagogue gives me a connection with the spiritual and an attachment to community, things we all need in our fast-paced, 21st century lives. Once I looked outside my own personal “four walls,” I found community waiting for me.

Here’s a quote from my favorite science fiction author, Robert Heinlein:

“The banker … pulled out a single credit note. "Eat first — a full belly steadies the judgment. Do me the honor of accepting this as our welcome to the newcomer."

Don’s pride said no; his stomach said YES! He took it and said, "Uh, thanks! That's awfully kind of you. I'll pay it back, first chance."

"Instead, pay it forward to someone else who needs it."

(Adapted from “Between Planets”)

I can’t possibly repay all that I owe. I can’t pay back; but I can pay it forward. I invite you to join me in this mitzvah today. Pay it forward to Beth Shalom.

Get involved in a committee. Come to a class or lecture. Invite someone to your home for a meal.

If you reach outside your personal space, you’ll find community waiting right there for you, the way it was for me.

10 things I am thankful for

In no particular order --

1) Waking up each day alive, alert and able
2) Kisses from my husband
3) A daily dose of Vitamin CH (chocolate!)
4) A warm dog snoozing at my feet
5) Afternoon naps
6) Taking tea with a good friend
7) Walking in the sunshine (or in the rain, or on the beach... walking is vastly under-rated until you can't do it)
8) Lifting my voice in song
9) Reaching people around the world with the push of a button
10) Being in a room full of family and friends

Hope your Thanksgiving day was filled with good food, good cheer, and good friends!

Happy birthday to me!

Today is my 47th birthday. After my cancer came back, I wasn’t sure I’d get to celebrate too many more birthdays, so each one is more precious than turning 16, 18, or 21, or any other, more usual, milestone dates.

I try to celebrate with family and friends as often as possible. Birthdays are one more opportunity to open a bottle of bubbly, eat some vitamin CH (chocolate) and get together with one another. Sometimes the reason to celebrate is just because it’s Wednesday. Or because the sun is shining. When you’ve got cancer, you find the golden moment whenever it takes place.

I found a translation of the prayer I recite each morning upon arising:
“I am grateful to You, living, enduring Sovereign,
for restoring my soul to me in compassion.
You are faithful beyond measure.”

Each day is something of a miracle. Unlike many women, I look forward to being able to say I’m a day or a year older.

I’m really looking forward (in a couple of years) to turning 50!

Out and About

I am typing this from a remote location in New Jersey. Ain't technology wonderful!

I received a scholarship from Living Beyond Breast Cancer to attend their one-day conference on "Moving Toward Wellness: Body, Mind and Soul." They very generously made it possible for me to cross the country to learn more about a timely topic. After all, when one has advanced cancer, trying to live in a framework of wellness can be difficult, if not (on occasion) impossible.

The keynote speaker described some great tools for seeking wellness. Validation, communication, dealing with PWACs (people without a clue -- do you know any?), crisis intervention, and of course the mind-body connection.

I also attended a worksahop on latest medical and complementary approaches for advanced breast cacner, where I learned about two new treatments. SUTENT (SU 11248) has been approved to treat advanced kidney cancer and like so many other chemotherapies, may have good effect on metastatic breast cancer. The other is Avemar, made in Hungary and marketed in the USA under the name Ave. It's made from fermented wheat germ extract and has been studied on oral and colon cancer, but again, it may be also appropriate for breast cancer. These drugs were mentioned by a medical oncologist and the director of a center of integrative medicine. The best of both worlds -- physicians who are open to all possibilities.

The keynote speaker also closed the seminar with some words on fear. Fear of recurrence (well, I guess I got over that one!), fear of dying and death, mortality, vulnerability, and spirituality.

She offered a great tool, one I had not considered before -- writing your own prayer, in words that speak to you, to read aloud every day when you wake up, before you even get out of bed to use the toilet. The sample prayer she shared was simply put, evoked great emotion, and was written by a patient who'd never done any writing before. I will give this one some thought and see what I can come up with.

While back east I am also visiting my family for a couple of days. We have been talking, eating, and generally enjoying each other's company. My dad's mobility continues to improve, and of course since he's been off chemo for several months, he now has a full head of hair again. Mom looks great and is enjoying her work every Sunday at the synagogue. In short, this has been a great trip!

Swimming in Pink

It's October, and that means Breast Cancer Awareness Month. Pink stuff is everywhere -- pink kitchen appliances; pink garden tools; even pink Barbie dolls (oy!).

Do me a favor: if you want to support breast cancer research, advocacy, or related issues, DON'T BUY PINK. The few dollars or even pennies donated per item can't provide enough funding to help in a big way. Women with breast cancer would be better off if you simply made a donation to an appropriate charity.

To get some background on this issue, read Buying Pink from the Seattle Times.

Want to help? You can ---

- Fund research, so I will live to celebrate another birthday.

- Fund instruction in breast self-exams for girls and young women, so they will learn what their breasts feel like and how to recognize changes.

- Fund early detection for women who can't afford mammograms.

- Fund patient support for women who have trouble making ends meet while in treatment.

- Fund advocacy work to get more government funding to find a cure for cancer.

But don't buy pink for me. It doesn't help.

Another cancer dream

I think this is another cancer dream..

I'm in a house, it feels like my house, but everything is topsy-turvy: the bed is in the wrong spot, the couch is gone (!) and another sofa is there in its place AND I DON'T LIKE IT AT ALL. I run from room to room, yelling at my husband. Why has he traded one sofa for another without asking me? How can he leave to go to work when everything is out of whack?

I was angry while dreaming this. I knew I was dreaming, but I couldn't wake up enough to go back to sleep and dream something else. Very distressing...

MRI results

My MRI was postponed from Tuesday of last week to Friday due to managed care silliness. Got the results today and it did not reveal anything new, so my back pain may be muscular. My oncologist is referring me to physical therapy. In the meantime, better living through chemistry, taken as needed for pain!

Dreaming of cancer

Last night I had my cancer dream again.

I am in a house that's full of noisy people and I keep trying to get them to leave. They refuse and make more noise than before, moving from room to room. I become extremely frustrated with the whole situation, lose my temper and begin shouting "You have to leave! I insist!"

I've had this dream several times. The house is my body; the rowdy, unruly guests are my metastases. And the rooms they more around in are my 23 site of bony mets.

I've said for the past four years that I will give cancer space in my body as long as it behaves itself and is a quiet tenant. The dream tells me that I am worried it's not quiet any more.

The back pain I've had for the past two weeks must be giving me more stress than I am aware of. I have an MRI on Tuesday to see what's up, if anything.

Happy new year to us!

This weekend we celebrated Rosh Hashanah, the new Jewish year of 5767. It was a rollicking start to the new year: the weather was warm and sunny; services were tuneful and ended at a reasonable time; and best of all, the food and shmoozing with family and friends was without parallel.

Rik and I hosted 11 people (and 2 dogs) on Friday night. Oy, the cooking! Gefilte fish, chopped liver, honey cake, challah. It was a feast for the Jewish soul.

On Sunday after lunch we walked down to the beach at West Seattle to throw our sins into the water in the tashlich ceremony. This year because of the weekend date and the warm weather, we kind of stood out from the sunbathers and kids playing in the water: a bunch of Jews dressed in our new year’s best tossing bread crumbs into the waves. Still, it’s a wonderful tradition to think of cleansing yourself of things from the old year that you don’t want for the new year.

Since 1999 I have made it a point every year to cast away cancer. It still keeps coming back, but as long as it’s manageable, I guess I can cope. But I still try to get rid of it every year.

Speaking of cancer, a friend has started a blog, The Assertive Cancer Patient. Jeanne and I met through one of her articles in the Seattle Weekly about living with mets. I got in touch to congratulate her on telling my story too, we met to walk our dogs and chat, and have been good friends since. That was in 2004, and we are both ever so pleased to still be around to walk the dogs, talk, and lean on each other. We even went to Japan together! You’ll enjoy reading Jeanne’s posts; she practically defines the maxim “Feisty patients live longer.”

I wish us all a year of peace, good health, and joy in life.

Four year anniversary

On Sunday, August 20, 2006 I celebrated four years of living with advanced breast cancer.

Talk about beating the odds! I have been stable on aromatase inhibitors with occasional bouts of radiation the entire time. NO CHEMO YET! My quality of life has been pretty good too. This seems incredible to me.

Highlights of the past 4 years --

- Broken bones are all healed and I can even dance on stage and sing in a choir.

- Travelled to Paris, Israel, Japan, Toronto and Palm Desert, as well as multiple family visits to NJ and Montreal.

- Got a dog, trained to be a service animal, and drag him everywhere.

- Bought our first house and just put in a new counter top, sink and faucet in the kitchen.

In retrospect, I have been very lucky in that my bone mets have responded well to treatment.

But --

- Mets cheated us completely out of children.

- Cancer forced me to retire from my career as a fundraiser at age 42.

- I went into full menopause at that ridiculously early age and quality of life suffers as a result.

Today I am alert, able and active. This isn't the life I thought I'd have, but it's the one I got and I intend to live it!

Back on line

Had some trouble with the blogger.com log in but now seem to be back on line. Computers!

We had a lovely weekend with my family in NJ. It was nonstop running to doctors, eating out, visiting with family, etc. Everything is made more complicated by the fact that my dad uses a walker, and getting to and fro can be challenging. We managed to squeeze in a movie and that was a real treat, especially for my folks.

You would not believe how people don't seem to see a man using a walker in a crowded place! Thankfully my sister did a great job of "spotting." We were all so keyed up afterwards that we had to eat soft serve ice cream, locally known as custard. Yummy.

It was a good visit all around and we are glad to have gone, glad to be home.

Quick and dirty update

Haven't posted since July because, well, life got in the way. So here's the quick and dirty --

Finished the dental work (finally!)

Weeded the garden, over and over again. Just a few green tomatoes on the vine.

Took on two more volunteer projects: the installation of our synagogue's new rabbi and a Seattle yoga event for people with cancer.

Saw friends perform in Gilbert & Sullivan's "The Pirates of Penzance" and repressed the urge to sing along

Had a bunch of kitchen work done (pull out trays for pots and pans, thanks to Peter!; new countertop, faucet & sink; new refrigerator)

Ordered fabulous tiles from Jerusalem Pottery in Israel, which arrived in 5 days despite the situation there

Had my first zometa treatment at my doctor's office instead of the hospital where I have been treated since 1999 (long story, more later)

Went to another funeral of a friend from my days in the AIDS world

Spent 4 days at the beach, which next year will grow to 5 days. Good friends went with us and our dogs loved running in the sand and surf.

And of course, spent a few days glued to the tube when a mad gunman opened fire at the Jewish Federation of Greater Seattle, murdering one woman and injuring four more. For details read the JT News.

It's been a long month!

We go back to New Jersey next week to see my folks. Dad has had several falls and his recovery has been set back. Rik is beginning to think about the new school year beginning August 28th.

More soon, I hope --

Jill

A really busy weekend

I had an incredibly stressful and busy weekend.

On Friday I had the penultimate dental procedure -- temporary crowns and bridge for the teeth pulled in November. Felt well enough afterwards to have dinner at a friend's house. I get the permanent stuff on 7/22.

On Saturday morning went to a bat mitzvah of a friend's daughter.

In the afternoon I went to the Healing Journeys conference, where I saw the most amazing performance art piece called Jonna's Body Please Hold. About 1 hour long, it details Jonna's 3 bouts with 3 different kinds of cancer, starting at age 20 or so. She was hysterically funny and moving as well, had the entire audience in the palm of her hand.

On Saturday night Rik and I went to the bat mitzvah party, where I drank a martini and danced up a storm. Also ate too much, but boy was it good! Green salad with blue cheese followed by salmon with mushroom risotto and asparagus, with creme brulee for dessert. (I raided the kids' ice cream bar, since the brulee was not chocolate.)

On Sunday morning I went to a synagogue board retreat, then to the funeral of my friend Dena, who died from complications associated with gall bladder surgery and her mets. She was 41, left her husband and a 6 year old son.

On Monday I was too tired to move.

Oy.

More cancer deaths

Another friend is dying from breast cancer. She had gall bladder surgery 10 days ago, they found 50% of her liver involved with metastases, and she did not bounce back from the surgery as expected. I went to see her in hospice tonight to say goodbye. She'll leave a husband and 6 year old son. She's not even 40 years old.

The other Jill died about a month ago. She left a husband and 3 year old daughter. Also not 40.

Oy, this disease sucks!

Komen Race for the Cure

Yesterday I joined the Puget Sound Komen Race for the Cure (along with 15,000 others). My wonderful sponsors helped me raise $1385 towards the anticipated goal of $1.5 million.

What a walk! The energy of such a large crowd is tangible. Upon arriving, we turned in my sponsorship checks, got our t-shirts and proceeded to the stadium floor. At least 25 corporate sponsors had set up tents to sample their products. In a crowd of mostly women, this meant an opportunity to get tchatchkes galore. Magnets, key chains, mini first aid kits, cereal, plastic cups, a cool scarf – you can see the rest in the photo. And of course everything is in shades of pink.

The walk itself was somewhat uneventful. Two years ago I did the 5K walk and was too pooped afterwards to enjoy the survivors’ parade. Last year Mom went with me and we hung out at the stadium drinking coffee. But this year Shira, Kathy and I did the 1-mile walk, and in the words of Goldilocks, “It was just right!” We chatted nonstop and felt as though we had strolled around the block. Afterwards we went back to the stadium for coffee, a second breakfast and some more sampling.

I participated in the survivors’ parade in the 6-10 year range. Too bad Komen didn’t offer a special section for women living with metastatic disease. I found I really missed the “other Jill.” We had walked together last year and she gave Mom and I a ride home after the walk. Jill died just a few weeks ago, and so I walked to honor her memory and that of my paternal grandmother, who also died from metastatic breast cancer. Jill left a husband and small daughter as well as a large extended family.

I did find several friends in the survivors’ parade and we exchanged hugs and greetings on the field, danced to the Gloria Gaynor recording of “I Will Survive,” and generally celebrated the fact that we are still here.

Back from NJ

We had a quick but jammed-full trip back east last weekend.

After taking a flight at the crack of dawn (4 AM wake up for 6 AM departure!), my sister picked us up at the Philadelphia airport. We spent some time with her, had a snack, and then went to the rehab center to visit with my father. He has lost quite a bit of weight, and of course is bald from the chemotherapy, but his color was good and he was more than willing to go out for dinner to a Chinese restaurant nearby.

We stayed every night at my parents’ home, and Rik kindly offered to do all the driving so that my mom could have a break. I think that was the night of the national spelling bee, which was televised for the first time on a network. There were 4 words of Hebrew or Yiddish etymology!

On Friday Rik and I met my sister at her synagogue, where she has just been elected president of the congregation. It was Shavu’ot, and the temple had 52 teenagers in the confirmation class. The service allowed each kid to have a speaking part, so it was a bit more complicated than usual. Of course there was a lovely luncheon afterwards, complete with bagels and white fish salad and cheesecake.

Then we went to the rehab center and visited with my dad. (Do you detect a pattern to our visit?) We were able to observe his physical therapy session and talk with the therapist about Dad’s progress. Then back to Susan’s house for dinner and off to see my niece in her tap dance recital. Of course we had to sit through 20 other groups of kids before getting to see Dana, because her class was last.

On Saturday we spent the early part of the day at rehab, then brought my dad to my sister’s house for my nephew’s high school graduation party. My cousins came down from north Jersey and we had a family reunion, even managed to take a photo together with everyone.

Saturday night Susan had her tap dance recital (like mother, like daughter!) but the rest of us stayed home to finish cleaning up after the party.

Sunday was again a visit with my dad at rehab, delicious brunch my sister and brother-in-law brought in, including black and white cookies, a real New York treat! By the time we got on the airplane to come home, Rik and I were both pooped. And he had to get up the next morning to teach.

Dunava looks good and sounds even better!

1st grey hair; Folklife update

On Friday I discovered my first grey hair. I am 46 years old, have had cancer since 1999, and just now saw a grey hair! It felt a little wiry compared to my normally fine brown locks, just the way it's been described.

Do I love to sing! On Sunday my choir had our set at the NW Folklife Festival. We were very well received, and evidently sang the best we have yet. It was a beautiful venue -- the Nesholm Family Lecture Hall at Seattle's McCaw Hall, the new(ish) opera house. The lecture hall is small and inviting, with the "stage" at the bottom of a deep house. The house lights were just bright enough to be able to see people's faces. Of course Rik took about 90 photos. It was great to have so many friends in the audience!

We sang 30 minutes of Bulgarian, Croatian and Russian songs, with a Romanian lullaby and Bosnian love song thrown in for good measure. Maybe I will be able to post an audio file for you to hear! In the meantime, enjoy the photos.

Am I coping?

Dad was finally removed to a rehab center on Wednesday, thankfully by ambulance from the hospital. My mom can't imagine how they would have transported him by car. He seems to be in a good facility and has actually been motivated to do more for himself. However, I hear he has lost a lot of weight, and his voice on the phone doesn't sound all that good to me. I am trying to prepare myself emotionally for when we go back east next week.

Took my car in for an oil change and $750 later (oy!) it is running well. Gillian rescued me and bought me lunch while they were working on the car. Can you imagine sitting at the mechanic's for 3+ hours!? I didn't have enough pages left in the book I was reading. We split a burrito at Taco del Mar and cruised the mall. Retail therapy.

Speaking of books, check out "Yiddish with Dick and Jane." You'll laugh till you plotz!

I have been self-medicating with chocolate. Had a yummy chocolate ice cream with dulce de leche and chocolate bits at Mora at Bellevue Square. Almost as good as Graeter's ice cream from Cincinnati. Today I had a Nanaimo bar made by a friend. Chocolate and butter and sugar and hazelnuts and coconut... totally delicious!

I started physical therapy for my lymphedema and it seems to be helping. Yoga today was also a mellowing agent. And there's always the ativan for when I really freak out.

I am RELLAY looking forward to singing and dancing at Folklife!

Stress and Anxiety

What a week. Dad is still in the hospital; he's likely had a heart attack (too much adriamycin is toxic to the heart) and will be discharged straight to a rehab center. So in addition to daily or twice daily long distance calls to try to get a handle on what's going on, there was research to find an appropriate and highly enough regarded rehab center on short notice. We think we have one and are waiting to hear if space is available. Hopefully by Monday.

I had 3 trips to the dentist(s) this week, causing additional stress. On Monday I could hardly tolerate having my teeth cleaned. Indeed, I reached my "full" point before the hygienist could even polish and floss. Tuesday was a follow-up with the oral surgeon, and today I went back to the dentist for an impression. And I have a powerful gag reflex.

The combination of Dad in the hospital in NJ, me in Seattle, heat aggravating my lymphedema, dental stuff and then developing carpal tunnel in my right hand from a week of bandaging for lympehedema has put me over the top. I exploded in anger at Rik yesterday for no reason. I slam doors, kick things out of my way, and am generally in the foulest mood imaginable.

It was so bad yesterday evening that I took 0.5 mg of ativan (lorazepam) which I normally reserve for MRI's. It helped enough to take the edge off, and I took the same dose again today before the dental impression. I am still storming around, but not yelling at my husband any more. Yoga class today was calming, but unfortunately the effect wore off as soon as I got into the car. I had to give in to instinct and get a piece of chocolate cake on my way home from the dentist to get the taste of the impression cement out of my mouth. So much for trying for weight loss.

Thankfully our friends have invited us over for dinner tonight, and I felt energetic enough to make dessert -- strawberry-rhubarb shortcakes with real whipped cream. An evening with friends, a couple of glasses of wine, and a good dinner should help, I hope. If not, there's always more ativan.

More than a week bandaged

Just a quick update. I am still bandaging at night, wearing the sleeve (and glove, today) during the day. The weather has perked up and it was sunny and beautiful all weekend. Unfortunately heat is another lymphedema trigger.

Other fun things have happened. Went to 2 fundraisers this past week -- one for Hadassah, one for Jewish Family Service. Each was a delightful opportunity to reconnect with friends while supporting worthy causes.

Heard from my mom this morning that my dad had a bad reaction to his last round of chemo and will be hospitalized for a couple of days to stabilize his dehydration. She didn't have much of a Mother's Day.

Today we visited with my cousin who's in town for a meeting. Plus Rik's "other" mother came back after a couple of months away, so we got to celebrate Mother's Day with an actual mother!

We had a lovely dinner at Serafina. I had a small antipasti plate of grilled portobello mushroom, triple-creme cheese, fennal and orange salad and focaccia with roasted onions, plus a green salad with grilled duck. Truly yummy chocolate cake for dessert.

That's all for now!

3 days bandaged – ouch!

I am on my third day in a row of bandaging for lymphedema and AM I CRANKY!

The bandaging is soft but not comfortable. I’m left-handed, but if you’re not, go ahead and imagine the following on your right hand –

1. Long, narrow strips of gauze wrapped around your fingers from nail bed to knuckles;
2. Foam chip bags placed on my forearm and elbow to break up sluggish lymph fluid;
3. Fleece-like padding wrapped around the hand and extending from the wrist to armpit;
4. Long, stretchy bandages (like Ace bandages) on top of it all.

The effect looks like a brown cloth cast. The impact?

Well, I can’t hold a pen while bandaged. I can’t use a knife so I can’t prepare food. It’s REALLY hard to type. It’s hard to open a bottle, fold the laundry, brush my teeth. Maybe you can imagine more.

The compression feels like someone is squeezing my arm in a tight handshake that goes from my wrist to my elbow. (It’s not as tight around the upper arm.) And I wear it for 23 hours a day, taking it off only to shower and dress.

I like to sleep on my left side, and with my arm bandaged I can’t curl up like usual, so I don’t sleep well. So I take a sleeping pill. And then, hopefully when the bandaging has taken effect and my arm is back to normal, I stop taking the sleeping pills and get rebound insomnia for a night or two.
OY.

I am unbelievably cranky because I feel so disabled by this lymphedema treatment. I do it because in the past it has worked, my arm’s swelling has reduced to normal, and I can return to wearing my regular compression sleeve. But the cumulative effect of 3 days in the sleeve is making me crazy.

Lymphedema, Folklife, Komen Race

Well, the bandaging helped, but it's so hot outside I think I need my glove anyway.

Last night my choir came over for rehearsal. We sing (a cappella) women's music from the Balkans. You can read about us here. In the photo I'm in the center back, top row.

It was a very laid back rehearsal. We talked, drank za'atar (hyssop) and verbena tea from Israel, and ate oatmeal chocolate chip cookies as much as we sang. We are trying to work up some new songs for our performance at Folklife over Memorial Day weekend.

We will perform at the Northwest Folklife Festival on Sunday, May 28 from 1 - 1:30 PM in the Nesholm Family Lecture Hall at McCaw Hall. The festival is free and you are all welcome to attend!

I just signed up for the Komen Seattle Race for the Cure on Saturday, June 17th. I've done the Race several times over the years and have tried to raise money each time. This year my goal is to again raise $1000. Last year my parents were in town that weekend, and Mom went with me. We walked around the stadium, sat and drank coffee, had our photo taken by the official photographer, got some free tchatchkes from the sponsors, and happened to meet the daughter of someone in my support group. It was really fun!

It’s always inspiring to me to be in the survivors’ parade. That’s how the Race closes – all the survivors line up by the number of years since their diagnosis and walk into the stadium to the cheers of the crowd.

Last year I walked with all the women who have metastatic disease. It was wonderful and sad to see so many of us. I hope everyone who was there last year can walk again this year!

I hope you will sponsor me and help me reach my goal of $1000 to end breast cancer. My personal Race page is --

http://www.pugetsoundraceforthecure.org/site/TR?pg=personal&fr_id=1000&px=1006327

The Race’s goal is to raise $1.5 million. Some of this money will provide early detection to women without access to mammograms. Some will help women disabled by their cancer. And some will support national research to find a cure.

You can make a credit card donation online by simply clicking on the link or copying and pasting it into your web browser. Then click on the “Support Jill” button.

Whatever you can give will help! I truly appreciate your support and you know I will keep you posted on my progress.

Lymphedema frustration

I worked in the garden pulling weeds this afternoon and my arm blew up! So I am bandaged from fingertips to shoulder and tonight found it hard to cut vegetables, take food out of the oven, type, hold a pen. So why am I posting? Good question. I guess I want to see if this blogging works.

Jill & Pumpkin 2004

Living With Lymphedema

I was diagnosed with lymphedema about 3 months after my lumpectomy. Leaning against a ballet barre I noticed an indentation in my arm.

My worst nightmare was the emergency room trip. When my cancer returned, I fell and broke my leg. As we called 911, I yelled to my husband, “Get my bandages!” When I woke up in the hospital bed, I saw my husband had written on my arm “No BP – No needle sticks.”

Lymphedema impacts my life every day --

I wear a compression sleeve. Measured for my arm, it goes from my wrist to my shoulder. I need 4 sleeves a year. When my hand swells I need a compression glove. I am left-handed, and my left arm is affected. I have trouble holding a pen and typing. I vacuum with my other hand. I carry only 5 pounds. I never have my blood pressure taken or a needle stick in that hand or arm.

At night, and up to 23 hours a day, I wrap layers of foam bandaging from my fingertips to my shoulder. My arm looks like a giant club! I don’t sleep well while bandaged and take a sleeping pill.

I see a physical therapist specializing in manual lymphatic drainage. I go once a day, three to five days a week, for a number of weeks. It takes at least 6 visits to get my arm under control.

I learned self-massage and special exercises. I wear gloves to garden. When cooking I wear surgical gloves. I bandage if I fly on an airplane. It’s uncomfortable to bend my elbow, so I don’t cross my arms over my chest, or put my hands on my hips. I use a telephone headset because it hurts to hold the phone in my hand. I had my wedding and engagement rings re-sized because my fingers had swollen from living with lymphedema since 1999. For several years I was even in a lymphedema support group.

I am a very compliant patient and my affected arm is not too much larger than my good arm. Otherwise it could swell to the size of my thigh.

Until my cancer spread throughout my body, managing lymphedema was a daily, unpleasant reminder of cancer. Lymphedema is a permanent part of my life and I wrestle with it from first thing in the morning, all day, and every night.

My Cancer Journey (Round 2: 2002)

The day I got the diagnosis that my cancer had returned and spread to my bones, I went home on crutches, lost my balance, and broke my leg.

Cancer was the last thing on anyone’s mind, because my initial experience had been so (relatively) positive. In 1999, at age 39, I found a lump in my left breast. A small, stage1 tumor, it had no lymph node involvement. Treatment included a lumpectomy, 6 rounds of CMF chemotherapy and 6 weeks of radiation at Swedish Medical Center - Providence Campus’s Comprehensive Breast Center. Developing lymphedema in my affected arm was a constant reminder of breast cancer but I managed to cope.

Not quite four years later, I had been complaining of pain in my thigh for several weeks, and thought it might be from a sports injury. When physical therapy didn’t help, I saw an orthopedist. This doctor took an x-ray and suspected metastatic breast cancer.

Later that same day I was rushed to the hospital with a pathological fracture of my left femur. A bone scan revealed metastases to the bones in the back of my skull, sternum, spine and both femurs. I underwent an emergency hip pinning to repair the fracture and began taking femara (letrozole), an anti-hormonal breast cancer treatment. I also began receiving monthly infusions of aredia and then zometa (pamidronates) to strengthen my bones. Several weeks of radiation therapy to both femurs and my skull reduced pain from the metastases.

The recuperation from a hip pinning due to pathologic fracture is lengthy. In my case, almost 5 months passed before I was able to place enough weight on the injured leg to walk with a cane. Then I had the right hip pinned to prevent another fracture. I began to see a naturopathic physician to improve my overall health, who prescribed a number of vitamins and supplements.

It also turned out that a constant, nagging cough was probably a small metastasis in my lung.

During this time I experienced overwhelming distress at my cancer’s recurrence with metastatic disease. I cried buckets of tears with my husband, family, and friends. However, the support of those who love me enough to supply companionship and food helped me realize that I wasn’t dying today. Swedish Medical Center’s Providence Campus Comprehensive Breast Center’s staff psychiatrist, Dr. Judith Lipton, gave me new perspective on living with cancer (and better living through chemistry!). Writing in a journal, even for 15 minutes a day, helped me explore my feelings and find meaning in my cancer experience. A weekly support group for people with advanced cancer, monthly support group of young women with breast cancer, and on-line support of women living with “mets,” as we call it, brought me to new communities of people walking in the same shoes. Getting a service dog helped me navigate my “new normal.”

Today, 3.5 years after my mets diagnosis, I am (fortunately) still stable on aromatase inhibitors. I continue to receive a monthly infusion of zometa. I take numerous vitamins and supplements. I have little pain from the mets, but have been treated with additional radiation therapy on my right hip and both humerii. The cough disappeared almost immediately after beginning treatment. Scans indicate stable disease, but I live with the realities of advanced cancer on a daily basis.

During this time I experienced significant losses:
• Medical retirement from my profession as a fundraiser;
• Applying for and receiving Social Security Disability and the accompanying loss of income;
• Accepting that my husband and I would likely never become parents. (Five birth mothers chose to keep their babies after they were born. Because of my cancer we could not adopt from another country, and were denied participation in our state’s “foster-to-adopt” program.)

I also identified and achieved life goals:
• Wrote a will, medical directives and a living will, outlining my personal philosophy;
• Traveled with my husband to Paris to visit family and to Israel for a reunion;
• Rescued a cocker spaniel, which then became my service animal;
• Bought our first house;
• Identified opportunities for volunteer work in breast cancer patient advocacy.

My philosophy? “Dum vivimus, vivamus: while we live, let us live!” Life is precious, and in a very real sense, we all have the same amount of time -- today.

My Cancer Journey (Round 1: 1999)

This is the story of how I found my cancer, got through treatment, and came out the other side --

One night in November 1998, I decided it was time to do a breast self-check. I wasn’t in the habit of checking every month, and I don’t really know what prompted me to check that night, but the lump I found was immediately detectable to my untrained hand. It felt like a small pea under my skin.

I called my doctor right away, and she arranged for me to have a mammogram upon returning from our planned vacation. While we were away, I checked the lump daily. It didn’t changed.

I had the mammogram in January 1999. The technician said it was hard to see the lump on the x-ray, so she wanted to conduct a biopsy. When I asked the doctor for her opinion, she told me it was most likely malignant.

The mammogram and biopsy took place on a Friday. Monday was Martin Luther King Day. As you can imagine, it was a long weekend! On Tuesday a call confirmed my fears – the lump was cancerous.

I met with a surgeon and oncologist at the Providence Breast Center. They outlined all the treatment options. It was hard for me to process all this new information. There were so many things to learn. Both doctors wanted me to make the decision, and I wanted to make an informed decision.

Since breast cancer runs in my family, I ended up choosing the least drastic, least invasive options. I wanted to have some choices in the event of a future encounter with cancer. I chose a lumpectomy with node dissection, followed by 6 rounds of chemotherapy and 7 weeks of radiation. Surgery took place February 1, 1999, chemo lasted into August, and I was finished with radiation by Sukkot.

I was lucky – during the surgery, they found that the tumor was small and had not spread into the lymph nodes. However, the drain left in my body became infected, the infection did not respond to antibiotics, and I had to be hospitalized. I had emergency surgery and spent four days in intensive care and a week in the hospital recovering from toxic shock syndrome.

Fortunately, I had limited side effects from the chemotherapy -- no hair loss (I didn’t take Adriamycin), very little nausea, and some weight gain (an unfortunate side effect for women). I did begin early onset of menopause, which is a common, but seldom mentioned, side effect. The symptoms of menopause continue to come and go, and I’d be happy to tell you my tricks for living with hot flashes!

In order to make the administration of the chemo drugs easier, I had a catheter implanted in my chest. This meant I didn’t have to get stuck with a needle every time I went for chemo. However, the line became infected and I had to stop chemotherapy for several weeks while we waited for the infection to clear up.

During this time we went on a family vacation. You should have seen me, dragging my bag of antibiotics (which had to be kept chilled), and clearing the line in the airports, at a baseball game, and in the hotel room. It was quite a trip!

During the early summer, I developed signs of lymphedema. Lymphedema, a side effect of node dissection, can occur in as many as 30% of breast cancer patients. It can set in at any time, from months to many years after surgery.

In my case, while leaning on a railing only a few months after my surgery, I noticed an indentation in my arm. This is an indication of stage 2 lymphedema. Since lymphedema is a life-long condition, I decided to seek treatment right away, before it got worse. For seven weeks I wore compression bandages for 20 - 22 hours a day; received special massage daily called manual lymphatic drainage; and was eventually fitted for a compression sleeve. I wear this sleeve every single day of my life, do certain exercises daily, and must take special precautions when I travel by air. I monitor my lymphedema every day by looking for signs of infection or an increase in my arm’s size.

Radiation treatment was, for me, the easiest part of the whole cancer experience. I went to the hospital every day for seven weeks. The radiation treatments lasted for only a few minutes, and I could go on with my life. I developed quite a suntan on my left breast, which took almost a year to fade.

Throughout my entire treatment, I received wonderful care from the physicians, nurses and technicians at Providence Medical Center. With only one exception, each person treated me as though I was a daughter or sister.

I worked part-time throughout treatment, because for me it was better to be busy and occupied, and I’m proud to say that in 1999, the NW AIDS Walk again raised about a million dollars.

Although I didn’t take part in a cancer support group while I was in treatment, I did receive wonderful support from family and friends. My sister came to visit from New Jersey when I was recovering from toxic shock syndrome, and left a freezer full of chicken soup and delicious food. My parents came for both the cancer surgery and my first chemotherapy treatment. You should have seen my dad exploring the PCC and marveling at the array of Northwest groceries. Friends provided ongoing support – they cooked meals, visited, and generally kept my spirits up. The Mitzvah Corps of our synagogue, Congregation Beth Shalom, brought dinners to our house. I also benefited from long conversations with acquaintances who were in treatment at about the same time I was.

I now participate in a lymphedema support group through Cancer Lifeline. Knowing other women living with this condition has made things easier for me. I still get frustrated when I can’t move my arm as easily as I’d like, or when I want to wear a short-sleeved shirt and feel conspicuous about the compression sleeve. My loving husband gives me a manual lymphatic drainage massage very night.

What can you learn from my cancer experience?

1. Check your breasts every month. Make it part of your regular schedule, like getting a haircut. Check on the first day of the month, or on the last day of your menstrual period, but check regularly! Make sure you have a base line mammogram at age 35, and that you get one every year after age 40. It’s worth the temporary discomfort to catch a lump early.

2. If you have a lump, or if a regular mammogram reveals a lump, go for treatment right away. Although I’m glad we took that vacation, I wouldn’t have waited another week for the diagnosis.

3. If you learn that you have cancer, don’t despair. There are only two choices with cancer, and I think deciding to die is a bad idea. Fight your cancer with every tool at your disposal. My chemotherapy nurse once told me that since I thought of chemo as medicine, my body tolerated it better than if I thought of it as poison. When people offer to pray for you, accept graciously. Believe in the efficacy of prayer, no matter the source.

4. If you decide to have surgery, minimize your risk of lymphedema and request sentinel node dissection. My only regret is that Providence began using this surgical procedure, which removes a single lymph node for testing, exactly one month after my lumpectomy.

5. Remember that you’re not alone. Cancer Lifeline, the American Cancer Society, and many other local and national organizations can match you with a survivor whose experience parallels your own. As a dear friend told me, if you don’t tell people what’s wrong, how can they help you? You don’t have to fight cancer alone.

Welcome to my new blog

Hi all,

I am trying out a new way to be in touch with my family and friends.

Yesterday I saw an article in USA Today about a cancer patient who stays in touch with his people via blog. I've been toying with this idea for months and today seemed the time to start!

I will update this weblog more frequently than I have been sending email newsletters, so check in a couple of times a week to see what's going on.

All the best,

Jill