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.