Quality of Life

At the Democratic National Convention last week, Chairwoman Debbie Wasserman Schultz talked about her experience with breast cancer.

“I know what it’s like to sit in that waiting room wondering how many more anniversaries you’ll get with your husband. How many more birthdays you’ll celebrate with your kids,” she said. “I don’t care how strong a woman you are, that moment is terrifying.”

She’s right.  That moment is terrifying and you can’t imagine it until you go through it.  And I certainly had those feelings when I first found out about this in July.  But I pulled myself together and was determined to work through it and come out on the other side.  I looked at the calendar (for the purposes of this essay) and realized I’ve been living with this diagnosis for fifty one days.  It feels like a bloody eternity.  It doesn’t matter that I had this squatter in my breast before I knew it, it’s the knowledge that scares the crap out of you.  Never was the old maxim ever more true: Ignorance is bliss.

Even with the diagnosis in hand, I was still ignorant that I was Stage IV.   And knowing this, even with assurances to the contrary, I see that clock countdown really fast and wonder how to come to terms with this.  I was reading a fellow blogger’s post today that captures this feeling really well.  In “Living in an Undefined Space,” the author of Telling Knots, explores how living with this diagnosis results in a vulnerability that is hard to describe.  Indeed, “undefined space” may be the best way to explain it.  And, to further complicate it, the inside of that undefined space is made further amorphous depending on where you are in the process.

I am new to the game, so to speak, and have just started my treatment to manage the disease; and my quality of life has taken a direct hit.   The fatigue that builds through the week after just two and a half hours of teaching on Thursday evenings has become debilitating.  I’ll have to begin working four days a week just so that I can meet my professional responsibilities.  Joint pain in my right shoulder and elbow are keeping me from lifting–that’s affecting my housework and my professional work too.  Lower back pain is making it harder to do laundry and clean the cat box.  Fatigue has affected my hobbies.  I love the rush of air you get when the subway comes barreling by the platform–but now I stand close to the wall less these sudden feelings of vertigo make me take a dive onto the tracks.

“It feels like self-indulgent drama-queenery to talk about my feelings about the cancer and about dying. I feel like a jerk when I have to cancel arrangements or can’t talk on the phone because I am not well enough. I feel like a selfish, entitled idiot when I find myself crying for no apparent reason. So many people are suffering more than you, I tell myself. Lose the drama. You don’t have it bad in the least!  —Telling Knots

I was so saddened when I learned that one of my good friends–who is dealing with two friends with breast cancer (we were diagnosed a day apart)–tempered sharing with me her stories of a good summer and good times because of our crummy news.  And I get it, that’s what we do when we have friends who are hurting.  We want to put ourselves second so that we aren’t insensitive to the gravity of it all.  And we, with the disease, want to put ourselves second because we don’t want our friends to hurt.  It’s all part of this undefined space–how we act, how others act toward us.  None of us know what to do.  It’s not like there’s a manual.

In this same space is the whole pink ribbon madness.  I have read the words of many women who are frustrated that in the upcoming Pinktober “festivities,” women with metastatic breast cancer are hardly mentioned.  Most organizations are focused on prevention and five year survival rates; you make it past those five years and you’re still part of the Pink Ribbon Club.  However, if you develop metastatic breast cancer later (or are diagnosed with it early on) you can still join, you just have to come in the back door.  All that talk about death and dying might unravel the fundraising process if people see you struggling and they can’t memorialize a fallen martyr they don’t have to actually face.  We’re more valuable dead than alive to the “cause” (whatever the hell that is anymore).  Metastatic breast cancer advocates launched a difficult effort to get one day in October designated as Metastatic Breast Cancer Awareness Day.   I don’t have to tell you that the irony (and, I believe, inappropriateness) of this falling on the 13th of the month is not lost on me.

It is a very odd existence.  One so alien and surreal–truly undefined–it is not surprising that women with Stage IV are virtually ignored in the pink ribbon zeitgeist.  After all, how do you market a nightmare?

The Nightmare. John Henry Fuseli, 1781.

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5 Responses to Quality of Life

  1. Crystal says:

    Ramona, as a woman with DCIS, high grade, cells ER+ and HER2+, extensive cell necrosis and multifocal in EVERY duct from end to nipple, please don’t minimize it. Assessing future invasive cancer risk for someone with DCIS depends on grade and a variety of other factors. Many may never turn invasive, but in my case I am a year or two away from a very aggressive breast cancer. Having a bilateral mastectomy to prevent invasive cancer that is inevitable in my case is a kick in the throat. We should be supportive of all women with diagnoses, regardless of stage. I am thankful for my positive prognosis, and agonize over my friend Scorchy’s diagnosis. We need to stick together and support each other through the difficult decisions we all have to make regarding our different stages of breast cancer.

    • Scorchy says:

      I can’t speak for Ramona, but I think I understand what she was feeling and what Crystal is feeling too; I was in both boats myself just yesterday. I was reading one of the boards and a woman who has been going through her own personal hell put a question out to the board: after our treatment do we still say that we have cancer or are we cancer-free survivors, and she predicated the fair question with “most of us here.” I was incensed. I wanted to “call her out.” But I figured out pretty early on that it wasn’t that person, or even anyone with a “lesser” cancer than mine, I was mad at this fucking disease. Oh yeah, sure, talk about your recovery, bitch. It was crazy, really. And I had to laugh at myself over the moment. We’re all in the same half-assed boat sailing on a sea of shit on a good day. We’ve all got one another’s backs. Cancer is the one that doesn’t care about any of us. Fucker.

  2. anomar13 says:

    Great commentary. As with anything having to do with cancer, the purveyors of “the quest for the cure”, only want to deal with the things they are sure of. Anything that shows the total ineffective incompetence and lack of knowledge that the medical, fundraising, and pharmaceutical communities share is swept under the rug. Who wants to donate money to people who can’t (or in the case of big Pharma, won’t answer hard questions)? Yes, cure rates are up, but they include the DCIS crowd (really, Stage 0?) whose cancers are almost unilaterally discovered by the ever promoted mammogram. I don’t have room for the whole disortation going on in my head about risk, and what really happens to those calcifications if left alone for a couple of years, but you get the picture. Get your rest, your immune system needs it, and FUCK CANCER. Hey that should be the mantra for October 13th. I had to smile about that , as 13 is, and has always been, my lucky number.

    Ramona

  3. Abby says:

    Thanks. Always helpful to hear your side. Oh, and FUCK CANCER!

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