Dear Ms. Robach

An open letter to Good Morning America News Anchor and breast cancer “survivor,” 

Ms. Amy Robach

 

Dear Ms. Robach,

What a journey you have had recently. From what I read in the press, save the persistent chemobrain, you are feeling well. Congratulations! I am quite familiar with the challenges of treatment and surgery, and getting back to everyday life. It looks like nothing can hold you back!

It ends up we have quite a bit in common.

  • Like you, I was diagnosed young and on my first mammogram, when I was 35 years old.
  • Like you, I opted for bilateral mastectomy in hopes that my lobular disease might not occur in the healthy breast also. (You know, of course, that bilateral disease is most common in lobular breast cancer, which is what I have.)
  • Like you I underwent chemotherapy and tamoxifen (5 years was the standard back then).
  • Like you, chemobrain persists.

It seems we have some differences as well. More

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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Vast Study Casts Doubts on Value of Mammograms – NYTimes.com

Vast Study Casts Doubts on Value of Mammograms – NYTimes.com.

#BCNext

We are constantly confronted by “breast cancer marketing,” the barrage of pink, from funding free mammograms and research, to supporting individuals with cancer, some of whom can’t even afford child care and transportation to treatment. We range from those with strong family histories, whether BRCA positive or not, to those enduring treatment, to long-time survivors with metastatic breast cancer, to those we have loved and lost. We are each the face of breast cancer.

In America, and I presume elsewhere, there is a great divide between those of us on the ground, living with and dying from cancer – and the other side of breast cancer, those who make funding decisions and allocations of both donated and allocated dollars, private, public and NGO.

If you could have their ear for a moment, if you could tell them what YOU think, what YOU see, what YOUR breast cancer priority is? What if your voice, combined with others like you, like me, could help influence our future?

Comment below or tweet to #BCNext to join the dialogue and spread the word! Let your voice ring out!

The Antidote to Pink Fatigue

© Pam Stephan

October tends to be a stressful month for me. School is back in full swing with a panoply of activities requiring my chauffer skills. My program year at work begins in earnest, interrupted – good and bad – by a series of holidays. While I enjoy the celebration, the office closures don’t seem to change the work demands.

And then there is PINK.

It’s hard to explain why, as a women living with metastatic breast cancer, I don’t jump on the pink bandwagon.

It supports me, right? Well, no. Wrong. Remarkably wrong.

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Putting My Money Where My Mouth Is

The Susan G. Komen for the Cure news cycle seems to be winding down just a bit, with the latest reports focusing on Nancy Brinker’s excessive expense reimbursements and calls for her resignation. As the story evolved, I was often asked my opinion. Those who have supported friends and/or walked in races or purchased any of the myriad of Komen-endorsed products want to know that they’ve done good. They want to know that with the re-funding of Planned Parenthood (which appears to mean that PPFA will again be eligible to apply for grants in the future, with no indication that they will be funded) and the resignation of Karen Handel that Komen is once again the venerable breast cancer charity of choice. They want everything to return to business as usual.
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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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Waiting to Exhale

A note to readers: I know and appreciate that I speak only for myself, always. However, in regards to this particular post I want to clarify that I do not intend my use of “we” to speak for a beautifully diverse community of people facing cancer, though some of my words may represent the experiences of others. Most especially I do not believe I can speak at all for those with metastatic disease; it would be inauthentic to even suggest as much. And so, if you do not see your experience in these words, I invite, nay welcome, you to add them to the dialogue.
It still happens, even after nearly ten years – a follow-up study, a blood test, something, and it sets off “cancer” mode. For me it is rare. I am usually more worried about the impact of the actual test on my body, rather than the results. I hate the CT contrast and I don’t handle it well. But the morning after the actual scan is through, I’m not typically anxious about the results. They are just information.

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A Perfect Storm, Or A Day in the Life of a Cancer Survivor

“Survivor” has a ring of past tense to it. Really, it should be “cancer surviving” — it is an active, everyday process. For example, today was “Scan Day;” a day dedicated to running back and forth between the doctor’s office and hospital, through a very carefully orchestrated series of appointments. Scan Day goes like this:

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