May 31, 2014

Going to Bulgaria

As many of you know, for almost 10 years I have been singing with Dunava, a Balkan womens' folk choir (http://www.dunava.org). Singing with Dunava is the culmination of my many years of folk dancing and singing. Now I have my first opportunity to travel to Bulgaria and learn from master musicians there.

Since I was 16, I have fallen in love over and over again with the music of the Balkans, specifically that of Bulgaria, with its tight harmonies and powerful sound. In Dunava I found a group of extraordinary women with whom it is my pleasure to sing. They have taught me so much over these past 10 years. As my friend G said when we were in the recording studio one day last year, "When I met you, you were a dancer who could sing. Now, you're truly a singer."

I'm writing today asking you to please check out our IndieGogo campaign and consider supporting Dunava. This trip will improve how we sing, will give us new material to bring back for workshops and concerts (in the Pacific Northwest) as well as influence future CDs and projects which will make their way around this country and the world. 

Any amount of support would help us reach our goal.

If you choose not to support Dunava, please click through to the Indiegogo page anyway. That simple act helps us gain more visibility and possibly will help us gather more supporters. Please feel free to share this widely as well - the more people who see it, the more support we may have!

Thank you so much. Bulgaria, here we come!

Jill 


May 28, 2014

Quick catch up

I've been off Xeloda for four days, and did indeed make it through all the Folklife happenings with plenty of energy. Sadly, my hands are worse: my left thumb and forefinger in particular are peeling layers of skin, are painful and dry. Even the Neutrogena Norwegian hand cream isn't helping enough. I think I will go back to using henna tonight.

My feet are the usual ouchy from neuropathy and Hand-Foot Syndrome.

That's all. Off the take a nap!

May 23, 2014

Xeloda kicking my butt

I haven't  posted recently because this second week of Xeloda has been very tough. My feet are red and painful, my hands cracking, even my tongue has Hand-Foot Syndrome. I'm also really fatigued and no matter how much time I spend asleep, I never seem to be awake enough.

However, I'm really looking forward to Folklife this weekend! Even if I can only attend on Sunday to perform and maybe dance a bit, it's my official kickoff to summer. And thanks to Dr G, I should have enough energy to handle it.

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Hear me sing with my choir Dunava at the NW Folklife Festival on Sunday May 25 at 4:20 PM at the Cornish Playhouse (formerly Intiman Theatre)

We're part of the Slavic Voices music performance, which begins at 3 pm. Arrive early to get a seat!




From Folklife: "Even better, Folklife is committed to making sure everyone can enjoy the Festival. If you can afford the $10 suggested donation great, if not, even a $2 donation helps keep Folklife free."

May 14, 2014

Xeloda round 16

I had more methotrexate on Sunday and started Xeloda round 16 the same day. So far I want to touch my finger tips all the time, my feet are still sore from neuropathy and hand-foot syndrome, but fatigue hasn't hit too hard yet. I've been running errands, getting together with friends, etc. Today I have my Avastin infusion and then will treat my self to an ice cream cone on this gloriously hot and sunny day. Then rehearsal tonight. Eventually I will do the piles of ironing, but I think I'll wait for a cooler, wetter day to do so.

Forgot to say that the other day I saw my incredibly handsome and friendly dermatologist for the first time a couple of years. He (as always) found a spot he wanted to biopsy. We're both sure it's nothing but you never know. The biopsy site is so high up on my back that I can't reach it myself, so I am showering at night instead of in the morning in order for Rik to change the bandage daily. Or I could wake up at 6 AM to shower before Rik leaves for school, then go back to bed. What a topsy-turvy world!

May 11, 2014

Healthline’s Best Breast Cancer Blogs of 2014

I received an email today announcing that my blog had been chosen as one of Healthline’s list of the Best Breast Cancer Blogs of 2014. I believe this is the third time in as many years that Healthline has chosen my blog as one of the best on the web. 

It's such an honor to me to receive this recognition. I started writing this blog as a way to keep family and friends updated on my dance with metastatic breast cancer. Over the years it's progressed from a somewhat private forum into a more public space for me to vent and to inform others about daily life with advanced cancer.

Given the multiple thousands if not millions of online cancer sites out there in the blogosphere, sometimes I have trouble believing that so many people follow my blog. I'm glad to write if reading what I have to say can help a woman newly diagnosed with metastatic disease or her caregivers and supporters.

So thank you, Healthline, for recognizing my work and for putting me in such good company.

May 01, 2014

There and back again

In a small homage to JRR Tolkien, last week I went "there and back again" -- to Philadelphia for a conference on metastatic breast cancer and a short family visit. I had a chance to spend some real quality time with my mother, enjoyed a shorter visit with my sister and brother-in-law, and made a new friend at the conference.

D offered to ship my conference notes back to Seattle so that I wouldn't have to carry them on the plane. I was delighted to take him up on that offer, even though Alaska Airlines comped one of my bags into the baggage area when I arrived at the airport.

The conference, sponsored by Living Beyond Breast Cancer, was the usual mix typical of these events. Some speakers were highly technical and medical in their comments; others were more accessible (I suspect) to the average attendee. I came away with some good info, none of which I remember now, but will blog about when my box of stuff arrives.

I was surprised to see a small but significant number of women with lymphedema, maybe 20 out of 300 or so. When I travel by air I have to bandage my affected arm, but I have never seen another woman wrapped on an airplane. However, in Cancer Land, there are always a few women with bandaged fingers or toes, arms or legs. I was surprised that LBBC didn't offer a session on lymphedema.

I attended a break out session on writing, which I found very interesting, although the speaker took an hour to get to his point and "prompt" us in a five minute writing exercise. We chose from writing about a piece of music that you find especially important; going back in time to talk with your ten year old self and explain what the future holds; or describe that your cancer looks like and what you would say to it. After we wrote, some people volunteered to share their pieces (I of course volunteered first). I wrote about music and song bringing joy into my life, and after I read, they asked me to sing. I gave them a few lines of Begala E Vena, a Bulgarian song in which I get to yip. I think they liked it. I'll post this bit of writing when the box arrives.

More later, as always.


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