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