How to help

Yesterday a new follower named Janelle commented that her mother had recently been diagnosed with metastatic breast cancer and she didn't know what to do to help her mom. Since Janelle posted a common question, here is my take on how to help someone you love when they've been given a diagnosis of advanced cancer.

Janelle, I am so sorry to read that your mom has advanced breast cancer. I imagine that everyone in your family is upset about this diagnosis. No doubt all of you are reacting in different ways.

Every person diagnosed with cancer has to find her own path on this journey. And those who care about them have to somehow allow themselves to let their loved one find their own way.

It's been my experience that no one can walk the cancer road with me unless they themselves have been diagnosed with cancer or another major illness. No one else really understands how I live with facing my own mortality on a daily basis. No one else grasps just how badly the treatment side effects can make me feel. And no one else can plumb the depths of my despair at my body's betrayal of me.

That said, there are things you can do to support your mother. If you live in the same town, you can driver her to appointments and bring her meals. You can visit, spending time just being with your mother. Or on a good day, you can take her out for a break from cancer to see a movie, go to a restaurant, or do something together that you know brings her joy.

You have to deal with your own issues too, whether that means talking with a good friend or family member, finding a support group for caregivers, or seeking counseling from a trained professional.

As a cancer patient, your mother has many resources available to her. I attend a support group that meets weekly at the hospital where I receive treatment. Although not everyone in this group has metastatic breast cancer, everyone has a diagnosis of advanced cancer and we help one another.

There is a Gilda's Club in Seattle and I've been a regular at Friday yoga classes for many years now. Gilda's Clubs also offer many other classes and workshops and are found in many large US cities. In Seattle we also have Cancer Lifeline, which provides a similar program.

I also belong to Club-Mets-BC, a listserv for women with metastatic breast cancer and their caregivers. You can find us at http://www.acor.org; click on Mailing Lists at the top of the page, then browse alphabetically under "C" or look for us under Most Common Cancers or Women's Cancers. Ours is a closed, or private list, meaning you have to apply to join us. There is also BC Mets, which is an open list, meaning anyone in the world can read any posts at any time.

Your family and friends may want to donate their money or time to breast cancer causes. I am partial to METAvivor, which funds research exclusively into metastatic breast cancer, and the Breast Cancer Research Foundation. I don't particularly think Susan G Komen For The Cure does much for women with metastatic breast cancer, but they are the largest such charity in this arena. I stay away from all the pink ribbon marketing (check out Think Before You Pink).

Your mother is on a tough road. It took me months to come to grips with my re-diagnosis at stage IV when I was 42 years old. The thing that helped most was writing an ethical will. In this ancient Jewish practice I found insight into the values I cherished the most at a time when I thought I would die within a year. You don't have to be Jewish to write one.

And lastly, we say in our home that sometimes we take it one day at a time; sometimes one hour at a time; sometimes one minute at a time. When it's one minute at a time, that's when I eat a piece of dark chocolate (vitamin CH!), because I know that at least this one minute will be a good minute. It's a bit flippant and doesn't help too much when things are really bad. But I like chocolate, and if iI can concentrate on something other than cancer for one minute, that takes my mind off cancer for one minute.

I hope this helps.

Latest chemo dose

Yesterday I received dose 13 of Abraxane (and some Avastin, but I'm not counting the number of times I've had that drug). All went well, except that Swedish just upgraded the computer system and Dr G and his staff were not ready for it. As Minor and James gets more integrated into the Swedish system, I am sure things will improve. But in the meantime Dr G had a hard time implementing his orders digitally. And he may have been at the Swedish doctors' meeting from 8 - 9 AM when they all got a lesson in the new upgraded system.

So my early 8 AM arrival didn't matter, since Dr G wasn't in his office until after 9:00. I sat in the waiting room from 8:00 until 11:00, reading, doing the crossword puzzle, and chatting with a friend. Luckily, by the time they took me back to the infusion center, my drugs had arrived from the pharmacy and we got started right away. I was finished just after noon, making this the longest chemo day yet at four hours.

I have had a small sore on my tongue for a few days. It was annoying but not really painful. The infection is my toe from a manicure in mid-August has still been bothering me, so Dr G put me on an antibiotic, and I think that has helped the mouth sore as well. It's not bugging me at all and is practically gone.

And for those who recall, I took a mammoth nap the other day, but awoke after only an hour feeling refreshed and ready to go grocery shopping.

Today I started the cooking for the Rosh Hashanah meals we will be sharing with friends. I made zwetschkenkuchen, a cookie-like pastry baked with Italian prune plums. I didn't quite have enough plums for the quantity of pastry, so added some late raspberries and chester berries from our garden. It looks great and smells even better. Thanks H for the recipe! I also made some baked gefilte fish using D's recipe. Tomorrow I will bake the travados.....yum, travados! Many, many thanks to B who shared her family recipe with me several years ago. Although I am not Sephardic, I make these little nut-filled, lemon and honey simmered pastries every new Jewish year.

Tired

Tomorrow I am supposed to get dose 13 of Abraxane. I've had slightly fewer doses of Avastin. There is one sore on my tongue and I am feeling pretty pooped today. I'm going to take a nap even though I just finished eating breakfast and walking the dog.  

It's cooled off again in Seattle although the sun is trying to break through the clouds. My experiment of leaving my head uncovered has been successful although I'm not sure what I'll do in this cooler weather! I guess wear a hat instead of a scarf and try to look more like a normal person. 

I'm putting dark brown eye shadow on the two noticeable patches of less hair growth on my head. But even with head hair growth, my eyelashes are mostly gone. 

That's all, I'll stop rambling now and take that nap.

Mazal tov, Hadassah!

I was asked to say hamotzi, the blessing before one eats, at tonight's Breast Cancer Exposed! gala benefiting Hadassah Medical Organization's breast care center in Jerusalem. I was touched and honored that the committee chairs, who know me only slightly, would offer me this opportunity to speak a few words to 300 of Seattle's leading Jewish and non-Jewish philanthropists.

I chose not to cover my head for this moment. This is not a shallow issue for me. I wanted to make the point that my breast cancer hadn't gone away.

I'd wavered back and forth for a week about whether to wear my wig (no, with it on I look sort of normal); a hat (not good for public speaking, people can't see your face under the brim); a scarf or simply au naturel. In the end, given some slight hair growth despite the chemo, I chose not to wear anything. I tried being in public uncovered for a few days and got no odd looks or unpleasant comments, even from strangers. That helped me decide I had just enough scalp coverage to make an unspoken statement that there was at least one woman in the audience currently in treatment for, and living with, advanced breast cancer. I hope doing so made a powerful point and that I didn't look simply unfinished.

Here is what I said:

Erev tov – good evening all! My name is Jill Cohen and I am proud to be a Life member of Hadassah since 1999. (This generated a round of applause.)

Next week starts the Jewish new year, Rosh Hashanah. It’s a chance to begin a fresh start, to put the past behind us and look to the future.

There are many other “new years” in our lives: We celebrate birthdays. Children and teachers recently started a new school year. January 1st marks the secular new year. Tu b’Shvat is the Jewish new year for trees.

And I celebrate a very personal kind of new year. Every August 20th is the anniversary of the day I was diagnosed with stage IV, advanced, metastatic breast cancer.

Tonight we’ll hear about the impact of breast cancer, and how Hadassah helps. As a woman living with breast cancer since the age of 39, I can tell you that cancer taught me how to live a “new normal.” Every new year that I live with advanced cancer is another year of possible new treatments, new drugs, new hope for longer survival. Research from Hadassah in Israel will help women like me in the USA.

In this week’s Torah portion, Nitzavim ( (Deuteronomy 30:19), we read: “I have set before you life and death, the blessing and the curse; therefore choose life.”

How can you choose life in the coming new year? Celebrate this new year by prioritizing your health. See your doctor, your dentist, your eye doctor. Schedule that colonoscopy! (Laughter from the audience) Women, get your mammogram.

A fresh new year brings the opportunity to start new things, create new habits, and follow new directions. This year, be zealous about your own health. This new year, celebrate yourself by making you the priority.

L’shanah tova tikateivu v’teichateimu

May you be inscribed and sealed for a good new year.

I owe a debt to Kathy-Ellen Kups, whose words inspired me to explore the connection between living with breast cancer and starting a new year.

Tired today

I had my second dose (in this round) of Abraxane on Monday. Last week I was really tired on Tuesday, but did all my planned activities and so was out from 10 AM - 2 PM, too long and without lunch. Today I knew I needed to save energy to attend a function tonight but I was so tired I wanted to take a nap after breakfast. Instead I ran a couple of errands and only now am I heading towards the sofa to sleep.

I had a shot of Neulasta on Tuesday so my white blood cell count should be climbing. I don't know if I am anemic or not. I forgot to get a printout of my lab work from Monday.

Hopefully a nap will do the trick.

Harvest

The Seattle rains started last night. It's been cool for days now, summer is definitely over in the Pacific Northwest even though the calendar says we are supposed to still have a few more days left. Here is my (probably) final garden harvest haul:

The last of the blackberries

A few more cherry tomatoes

Some fall-bearing raspberries

More than 20 mostly ripe tomatoes and two peppers
(plus there were a few more we've already eaten) 

The pinkification of October arrives early this year

It feels too early for my annual rant against cause marketing and the "pinkification" of October, also known as Breast Cancer Awareness month.

First of all: Who in western culture isn't aware of breast cancer?

Second: How will licking yogurt lids * help people like me?

* "Yoplait will donate $.10 to Susan G. Komen for the Cure® for each pink lid redeemed by December 31, 2011, up to $2 million. Only 25 codes per user email address per day may be entered online. Restrictions apply."

Whoopee. Why can't Yoplait just donate the money? And there are many other charities besides Komen that fund research in to the treatment of and cure for breast cancer.

So this year, when you see all the tempting pink ribbon crap on the market place, think before you pink. Ask the hard questions:

1. How much money from your purchase actually goes toward breast cancer? Is the amount clearly stated on the package?

2. What is the maximum amount that will be donated?

3. How are the funds being raised?

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

5. What is the company doing to assure that its products are not actually contributing to the breast cancer epidemic?
Don't buy into the pink. Make your dollar really count through a donation. Here are two of my favorite breast cancer charities, oriented towards research. After all, that's what I need.

Breast Cancer Research Foundation

METAvivor

Seattle Symphony Day of Music

Dunava sings from 12 - 12:30 PM in the Illsley Ball Nordstrom Recital Hall!

The Seattle Symphony and Music Director Ludovic Morlot invite the public to experience live music at Benaroya Hall with a FREE Day of Music on Sunday, September 18, from 12 noon to 6 p.m. Over 40 musical acts representing a host of genres — from rock and hip hop to jazz, classical and folk — will appear on multiple stages. A full listing of performers and times follows below.

Day of Music is FREE and no tickets are required for entrance. Activities specifically designed for children begin at 10:30 a.m. in Soundbridge Seattle Symphony Music Discovery Center, on the corner of Union Street and Second Avenue.

New this year, a wine tasting — featuring live music and select wineries from Seattle Metropolitanmagazine’s September 2011 “Washington’s 100 Best Wines” list — will occur in the Norcliffe Founders Room from 12:30 to 3:30 p.m. Tasting tickets will be available at the door for $20; the wine tasting is the only part of Day of Music that requires a paid ticket.Special thanks to Boeing and the World Presidents’ Organization, Los Angeles Chapter, for sponsoring this incredible event.

Day of Music
September 18, 2011, beginning at 12 noon
(Children’s activities begin at 10:30 a.m. in Soundbridge)

Schedule of Performances by Location

S. Mark Taper Foundation Auditorium
12:00 p.m. Seattle Sounders FC Sound Wave Band
1:00 p.m. The Seattle Repertory Jazz Orchestra
2:00 p.m. Seattle Women’s Chorus / Captain Smartypants
3:00 p.m. School of Rock (aspiring youth rockers)
4:00 p.m. Seattle Symphony
5:15 p.m. Seattle Symphony

Samuel and Althea Stroum Grand Lobby
11:45 a.m Nancy Kirkner & Janet Anderson (solo English handbells & piano)
12:30 p.m. The Baudboys (A Capella)
1:30 p.m. Seattle Symphony Musicians (chamber music)
2:30 p.m. Bag o’Tricks (contradance)
3:30 p.m. Toy-Box Trio (New Classical Music with Carnival Flair)
4:45 p.m. T.E.A.M (hip hop)

The Boeing Company Gallery
12:00 p.m. Levi Waggoner, Heather Dye & Laura Milleson (vocals and piano)
12:45 p.m. Timothy Garland & Victoria Parker (violin duo)
1:30 p.m. Four to the Floor (jazz quartet)
2:15 p.m. Eric Haines (one man band)
3:00 p.m. The University of Washington Chamber Music Club (String Quartet)
3:45 p.m. Snake Suspenderz (cartoon jazz)
4:30 p.m. Lohan Prado (Beatles covers)

Illsley Ball Nordstrom Recital Hall
12:00 p.m. Dunava (Balkan women’s choir)
12:45 p.m. Seattle Classic Guitar Society
1:30 p.m. Q&A with Seattle Symphony Music Director Ludovic Morlot
2:15 p.m. Pacific MusicWorks (early music)
3:00 p.m. David Paul Mesler & Tony Rondolone with live painting by Leigh Knowles Metteer (chamber music)
3:45 p.m. Seattle Youth Symphony Orchestras (string quartet)
4:30 p.m. Rondalya Sa Seattle (Filipino music)
5:15 p.m. 5th Avenue Theatre

Garden of Remembrance
12:00 p.m. Celtic Arts: Puirt na Gael (Scottish Instrument Quartet)
12:45 p.m. Byron Au Yong & Friends (Kidnapping Water: Bottled Operas)
1:30 p.m. Youth Rescue Mission (indie rock)
2:15 p.m. Q&A with Seattle Symphony Music Director Ludovic Morlot
3:00 p.m. New Age Flamenco
3:45 p.m. UmojaFest P.E.A.C.E Center (hip-hop soul)
4:30 p.m. Juliana and PAVA (Ancient Russian Folk Songs)
5:15 p.m. Zero Gravity Circus (psychedelic jam rock band)

Soundbridge
10:30 a.m. Randal Thatcher (drum circle)
11:30 a.m. Anna Vasilevskaya (Russian folk for kids)
12:30 p.m Mary Kantor (Harundineus clarinet quartet)
1:30 p.m. David Paul Mesler (songwriting workshop)
2:30 p.m. Watershed Opera
3:30 p.m. Kids Céilidh (Irish sing along)

Norcliffe Founders Room (wine tasting / $20 fee per person)
12:30 p.m. Just ’Cause (jazz quintet)
1:30 p.m. Lohan Prado (Beatles covers)
2:30 p.m. Ars Longa (chamber music)

*All programs and artists subject to change.

Philosophy from the comics

So true!

Hear Dunava sing!

Here it Dunava's fall performance calendar!

Sunday, September 18, noon (yes, that's this Sunday):
We're part of the Seattle Symphony Day of Music, a grand showcase of all kinds of local groups, all genres. We sing from 12:00 - 12:30 PM in the Nordstrom Recital Hall at Benaroya Hall (200 University Street, Downtown Seattle). Admission is free! Click on the link for a full schedule. 

Saturday, September 24, 7 PM: 

This may be our smallest venue yet: We'll sing at the variety show "Muhabbet" at Cafe Paloma in Pioneer Square. This is a lovely intimate evening with delicious food and an eclectic variety of entertainment. The restaurant is small, so we recommend making reservations well in advance. Admission is basically the cost of your dinner. Cafe Paloma is located at 93 Yesler Way, Seattle, WA 98104-2530, telephone (206) 405-1920.

Sunday, October 23, 3:50 PM:

CroatiaFest at Seattle Center! We will perform the Ladarke song cycle with Vela Luka Croatian Dance Ensemble and Dave and the Dalmatians. Estimated time is 3:50 PM in the Exhibition Hall. Admission, again, is free! (Read here for more about Ladarke.)

And, finally, save the date:

Saturday, December 10, 7 PM: 

Dunava in concert at MOHAI! I'll let you know when tickets are available, but I wanted to get this date on your calendar soonest. We'll sing songs from our CD, new Bulgarian songs we learned this year, and as always will have a special guest! (Not telling who!)

Thank you for your patronage, and we hope to see you in the audience soon!

The ladies of Dunava

(Christi, Dina, Hila, Jill, Jody, Meg, Meredith, Ramona, Tedy, and Val)