Bah, Humbug?

It’s the holidays, and I’m weary. I am generally quite successful at living in the moment, savoring the day, embracing what life has to offer, most especially around the holidays, when the world if filled with good cheer and egg nog. (OK, I’m kidding about that…I’ve never had egg nog.)

But right now I’m weary…

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NaBloPoMo 3: Now What?

Photo credit: femerall.wordpress.com

The “on one foot” version for anyone new to my blog: In February I will be an 11-year breast cancer survivor. Three years ago this month my CA 15.3 tumor marker (a controversial blood test used as part of my follow-up studies) started rising. And just over a year ago my cancer showed up in my bone marrow. I now have incurable, metastatic breast cancer.

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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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I Want You To Know…

20121024-144852.jpgI have been neglecting this blog, and the list of posts I intend to write is growing rapidly. There’s some pink fatigue, things are busy in life, at work…and just to make sure I have no time to get into trouble, I am taking a new writing class this fall.

This past week we were asked to write on the prompt “I Want You To Know.” I am not sure why the #bcsm community was on my mind that evening, but it was very much in my thoughts as I wrote the following:

 

I want you to know that you’re not alone on this journey. It is so complicated when we begin…the cacophony of new information, advice and decisions, the pressure to make quick and vital treatment choices; the fear, the anxiety that can stop you in your tracks…you’re not alone in this.

I want you to know that the decisions you are about to make, though vitial, are ones that you can master. There are people ready to help you – to learn this new language, to answer your questions, to dig deep into the research with you, or just let you cry.

I want you to know that there are others who have walked this path before you. Women, and men, who have been where you are now. And while their paths may be different, they will intersect with yours again and again.

I want you to know that we will be here. Any day, any hour. I have lay awake at 3 AM, terrified, alone in the dark. I don’t want that for you.

I want you to know that we are here to help. This is a strong and vibrant community, and while you may not know us yet, we are committed to your survival, to your well-being, and we stand with open arms whenever you need us. I want you to know we will help protect you.

I want you to know you are not alone. We are tens of thousands strong.

I want you to know that it will be hard. You will be frightened, overwhelmed, confused. You are still not alone.

I want you to know that there is nothing you can say to scare us, or send us away. We don’t know where this journey leads…but I will be at your side, wherever it takes us.

I want you to know that cancer will not win. It will make you stronger, even if it weakens you. It will teach you to love in ways you never knew you could. It will give you insights, and power, and courage. And even if it manages to overtake your body, it will never overtake your spirit.

I want you to know that you can do this. And you will not be alone. I just want you to know…

The War on Cancer

ImageIn the way that our blogosphere seems to build from one post to another, Marie at Journeying Beyond Breast Cancer recently shared thoughts about the language of “survivorship,” and leads right into some thinking I’ve been doing this week.

All this talk about language, and I’m a bit stuck on the issue of “war” verbiage. I sense there are those who are “fighters” and those who are “living with” cancer. I respect both deeply, and hope for a time when they can respect one another!

I have been vocal (can we be vocal in writing?) in my frustration with the “war rejectionists,” if you will. If fighting a battle against cancer doesn’t work for them, then without question they should find language that is more fitting or comfortable. But they need to leave others to use the language that fits. I wonder, too, whether war language is easier to critique when treatments are behind you, and perhaps something that is particularly beneficial for those of us in treatment. As I read the comments on Marie’s earlier mentioned blog, it was not lost on me that most of the feedback was from women who were NED, their cancer treatments behind them. To continue my own analogy, they are no longer in the trenches. Like great generals, they can step back, be objective, wonder what the war was all about and how to move forward.

So, as someone who is back in treatment with no end in sight, I find the “living with cancer” language a tough pill to swallow. Breast cancer cells have taken up in my bone marrow. They have begun to erode my pelvic bone. They are in perfect position to spread to other vital organs. 75% of women in my condition are dead in 5 years. I do not, under any circumstances care to “LIVE with my cancer.” I want it DEAD. Completely. Annihilated. Gone. It is most unwelcome and I am not interested in living with it, being kind to it, or making peace with it. I don’t want these cells to settle in and feel comfortable.

So, I’m not prepared to see myself as “someone living with cancer.” I would much prefer to be killing it. Doing so, for me, is active and empowering. Killing cancer cells is what my body needs to do to save my life.

363 Points Down

I has been nearly ten months since every breast cancer patient’s worst nightmare became my reality.

I can still remember looking behind me at the evocative 5-year mark, as tamoxifen came to an end and there was nothing but life ahead of me. I had dodged a bullet, and while there were still pesky follow-up visits, each day was a step closer to being “cured.” My heart ached for those who were not likewise blessed to have life after cancer, and even as I inched my way further and further from treatment, I vowed to never take my good fortune for granted. That is, of course, all it was. It could just have easily been me. In fact, it just as easily became me.

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Life On the Margins

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It has been an incredible few days at this year’s National Breast Cancer Coalition (NBCC) Advocacy Summit. From meeting wonderful “virtual” friends at last, to briefings on the cutting edge research and progress toward Deadline2020, both my heart and mind have been expanded. Tonight is our annual celebration, and tomorrow we will be on Capitol Hill making our final push on behalf of both “The Accelerating the End of Breast Cancer Act” (HR 3067) and continued funding of the Department of Defense Breast Cancer Research Program. Overall, I have to say…it’s been AMAZING.

BUT…

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When Mom Has Cancer

There is nothing easy about having cancer, from the time and energy devoted to treatment, to the near-limitless array of side effects, to life-long complications, and the ever-present wondering.

In truth, I have been remarkably lucky. Though the chemotherapy I underwent 10 years ago was wrought with many of the typical side effects, none have endured. Bilateral mastectomies and reconstruction were certainly not easy, especially in a post-chemo body, but that is long over and I’ve had no lasting complications, save the risk of lymphedema. I was spared radiation (saved for another day), and five years of tamoxifen was far easier on me than many other women I know. I certainly hoped that cancer was in my past, but that was not my fate. Treatment for metastatic disease has brought on the discomfort of hot flashes and night sweats, and I fear the day when they can’t access a vein in my arm and worry about future drug resistance. Each tumor marker and scan brings on anxiety over the possibility of further spread (but also the promise of NED). But all in all, I have no pain and my treatments do not limit my activities in any way. In fact, to look at me you would never guess I’m sick at all.

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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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