Call to Action – 2 Minutes of Your Time

 

call-to-actionA QUICK introduction:

  • Nearly 100% of breast cancer deaths are a result of metastatic breast cancer (MBC).
  • MBC research accounts for roughly 7% of research funds – including prevention of mets.
  • Death rates have hardly changed in 30 years.
  • Most metastatic research of one origin can help those whose cancer started elsewhere.
  • No matter what you read in headlines, we are not even close to chronic disease status, let alone a cure.

As the White House begins to establish priorities for the Cancer Moonshot they are listening! PLEASE follow the link below to support establishing metastasis research as a Moonshot priority.

Lives depend on it.

Metastasis Research Petition

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The Wig

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wigtowne.com

I haven’t been out and about as much as I’d like lately. Taxotere is taking its toll, and fatigue is reaching further and further into my life. What was originally a few days of being tired is now a week or more, leaving a week or so of time when I’m feeling good before the next cycle begins. I’ll take the days I have with gratitude, believe me, but it leaves little time for socializing. Most of my “good” week is spent running errands, catching up on my advocacy work, and getting some good writing time in.

But this was a good week – and I got out more than usual. I had a CBCRP meeting in Oakland and the bar mitzvah of a family friend.

For occasions like these, I spend more time than I should thinking about my head. It’s nearly bald – shaved close but not off – and I’ve been spared total baldness in favor of “fuzz.” The irony is that I gave up my long, curly fuzz for the short fuzz of a buzz cut.

IMG_3676.JPGThere are practical matters to consider. Walking around bald doesn’t bother me, but it can be awfully cold! Scarves help, and it’s what I wear most days. But TSA can make me remove a scarf, and that’s a hassle. Plus there’s the shocked stares of pity by those around me, which I really can’t stand. So I decided to wear my wig to the conference. It got me through TSA in both directions, though it itches quite a bit and I worry about it moving around. To me it looks so obviously like a wig, but only a few in the know agree. I’ve had a number of compliments about my new ‘do, so I guess I’m fooling most of the people some of the time.

Fast forward to the bar mitzvah. It was the first time I’ve been in synagogue in a number of months, and while many friends know that I’m back in chemo, it’s not – of course – part of their daily awareness. The experience is very different – close friends do a triple take before they realize it’s me. I know my curls were my signature feature. I could have gone with a curly wig, and that might have made things easier. But I wanted something a bit different. Nothing drastic – I’m not the type to go green or blue, let alone pink, but something that could make an otherwise miserable experience fun was in order.

So I’m never quite sure how to approach someone. Do I start with an introduction, which seems awkward, but not as strange as the “who the hell are you?” look I sometimes get. Or do I let them go from confusion to concern to shock to recognition? I try to stay with John, to provide a context and make things easier…but even that doesn’t work. I’ll never forget the time, back in 2002, when a very dear friend was upset with John for bringing another woman to synagogue while his wife was sick at home – until she figured out that it was a wigged me.

It’s been an interesting social experiment, and one that I hope isn’t making others too uncomfortable. I’m no less sure what to do than I was 14 years ago, but I’m still here asking the questions!

The Measure of Time

CalendarLast week saw yet another CT scan and, unfortunately, some progression: albeit slowly, my cancer is growing again. And so I am now looking at my third-line treatment. I must admit, its all a little surreal. I was going to be that girl who got years on each successive therapy, denying to odds and beating down the doors of a ripe old age. Strike that – I AM going to be that girl, just not the way I planned.

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The Antidote to Myriad & More

This is very much not my style! I like to do my research, make sure I’ve evaluated all angles, shore up the details, and THEN dive in with both feet. But today I don’t have time for that!

Last night my husband’s colleague Bonnie pulled me aside at dinner to tell me about an article she’d read in the local law journal. The room was crowded and I knew I wasn’t going to “get it” and so she offered to send me it to me. It just arrived. TWO amazing gifts from ONE amazing company: VIRATECH.

(Now, let’s hope that in my rush to share I don’t get this all wrong…)

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“It Will Be Okay…”

ImageRemember in Toy Story, when Mrs. Potato Head is about to send Mr. Potato Head off to help save Woody and tells him she’s packed his “angry eyes?”

Here’s to using our “angry eyes…”

AnneMarie’s writing challenge last week was to share the annoying, upsetting, infuriating, frustrating, painful things we have heard as survivors. In reading some of the comments on her blog, I am reminded of how lucky I’ve been. There have been few overtly stupid things said within my earshot. As always, AnneMarie got me thinking…
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February 7, 2002

The room is dark, a desk divides us. He sits, looking down upon me. “You have to stop crying and focus,” he exhorts. I feel the tissue against my face. Where it should be soft, a comfort, it is rough against my already-chaffed skin. Too many tears have fallen. I can’t cry and focus at the same time? I am confused. I can think of nothing but his admonishment, and I cease to hear his words. I know I must capture this information, but I can’t. I shouldn’t be crying?

Doesn’t he know I’m going to die?

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When the Other Shoe Finally Drops

New to my blog? Here’s the background on today’s post: http://wp.me/p1ADsf-60

Blessed are You, Adonai Our God, Sovereign of Time and Space, who fashions humanity with wisdom, creating within us many openings and cavities. When our openings do not open, when our bodies are blocked, it is impossible to survive and continue to live as a blessing to You. Blessed are You Adonai, Sovereign Healer, who has given us bodies which function, and who creates wonders and miracles.*

“Relieved,” I answer. More than anything, I am relieved. My response is greeted with skepticism, but it’s true. I know it’s probably not what I am “supposed” to feel…and it sure as hell isn’t what anyone else is feeling, but I am. Only those closest to me and those who have been there don’t respond with shock or puzzlement. I’ve been waiting, and I’ve known it has been coming. It has been a very long two years.
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D(x)-Day

A fellow blogger at The Day I Found Out got me thinking recently. Their site (very moving, btw…check it out!) focuses on first person videos of survivors and loved ones telling the stories of their diagnoses; stories that are sad, sweet, and uplifting all at once. My browsing there led me to think about my own D-Day.

The truth is, the actual day of my diagnosis is part of a bigger picture, which includes the days I didn’t find out. The road to diagnosis was a long one, much longer that it needed to be. It began with my first “baseline” mammogram ordered by my internist in November 2001. I don’t know what made her order the test, and I’m not sure she does either. Instinct? Prophecy? It’s not in my nature to wonder why, but rather to be grateful that she did! More

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