Category Archives: Cancer™

Empathy Cards, by Emily McDowell

 

“The most difficult part of my illness wasn’t losing my hair, or being erroneously called ‘sir’ by Starbucks baristas, or sickness from chemo,” McDowell writes on her website. “It was the loneliness and isolation I felt when many of my close friends and family members disappeared because they didn’t know what to say, or said the absolute wrong thing without realizing it.”

—”A Cancer Survivor Designs the Cards She Wishes She’d Received From Friends and Family.”  [Slate; Kristin Hohenadel]

 

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Cancer Goalie

I will survive!   (Until I don’t.)

In a recent A Way With Words segment, Martha Barnette and Grant Barrett considered the words “cancer survivor.”  I know survivorhood well; we have been circling one another for some time.  But our days together are numbered.

Following my initiation into the cancer club, I referred to myself as a “survivor” a couple of times, and it always felt artificial, forced.  I was alive, but sore and scarred, and I couldn’t lift my arms above my head for some time.  The high-octane s-word did not fit: it has a tinge of wishful thinking or hubris, maybe chutzpah—not to mention an unacknowledged disdain for those who perish. Anyone who has had cancer knows she can’t be sure how many days lie ahead.  And we all stop surviving eventually, cancer or no cancer.

Even more, I resisted referring to myself with a noun that described just one facet of my identity.  It was too essentializing.  Instead I described myself as “someone who has experienced cancer,” or “who has been treated for cancer,” or, sometimes, “who has to be aware of the possibility of more cancer in her future.” (Catchy, eh?)  Think of “cripple” becoming “crippled,” then “disabled.”  And later moving on to “differently abled,” or “someone who uses a wheelchair,” or “who has physical limitations.”  If you resist such rewording and fine-tuning, imagine being diagnosed with cancer.  Might your emotional or psychological response be influenced by these terms, which identify the tumor-laden as either losers or winners?

A few months ago, I polled  members of a Facebook group, Flat and Fabulous, about this very term.  The variety of responses synced up pretty closely with those noted in the A Way With Words discussion.  Some were fierce: “Goddammit; I sure am surviving this beast,”  or, “I have been through three cancers, and I am still here.”  Others felt they were not “entitled” to say they were surviving, since the oncological jury was still out.  Still others, in the midst of treatment, were feeling more nauseated and weakened than triumphant.  And, perhaps, irked by the pressure to triumph.

Sometimes I describe myself as “half flat,” which makes a musical pun.  When I do on occasion use a noun, it is “Amazon,” to describe my body shape, not any warrior status.  The word “warrior,” mentioned in the A Way With Words discussion, is another that may feel alternately inspiring or overbearing. (And as I have pointed out elsewhere, “real” women warriors are not always honored for their service.)  If this fighting were more like tai ji fencing, where one learns to yield to impact and redirect it, all the while honoring one’s opponent and seeking balance, I would eagerly take up my sword again.

It’s interesting how words like this can be affirming or off-putting, welcoming or perplexing.  They can honor shared experience or ignore individual stories.  Or, more likely, both.   And the words used to described those of us who have hosted malignancies are part of a wider complement of cancer lingo.  Some find this shared vocabulary meaningful.  There is a Facebook group that calls itself “My Pink Sisters.”  Some women have pink-ribbon tattoos.  Curiously, there are also pink drill bits used for tracking.  (I am not making this up.)  The Susan G. Komen Foundation even colonized the universe recently when they launched a pink space probe into the final frontier.  (I am not making this up either.  The Onion did.  Not surprisingly, some people believed it.  For good reason.)  For my part, thanks to the commodification of breast cancer that proliferates like . . . like a cancer, I often choose to excise the word “breast” from my “status,” not wanting to be tied up in ribbons or to field others’ rose-colored thoughts.  Of course I speak for myself only.  My own preferences notwithstanding, it is important to appreciate  individual experiences, responses, and strategies for—yes, survival.  There is no wrong way to do cancer.

The all-or-nothing sensibility of  survivorhood seems to reflect the black-and-white thinking that seeps through many discussions about cancer.  As Martha mentions, we used to say “victim,” and we have moved on to “survivor.”  Is there nothing in between?  It’s like being forced to think oneself a prisoner or an escape artist, when living after cancer feels more like being a fugitive. Maybe a refugee. Interestingly, the older term “remission,” which Susan Gubar recalls in her  “Don’t call me a cancer survivor,” sounds more realistic. Whether victim, survivor, warrior, or wimp, the word “patient” never gets dropped.  Please remember that when you demand to be reassured by asking, “But you’re fine now, right?  It’s behind you?”—as if cancer is a box to be checked on a to-do list.  A friend recently described me as having “beat” cancer, but that is not how I see it; I still have a hot date with my oncologist every spring.

What about “veteran,” or “alum”?  With the possibility of reenlistment or grad school in the future?

Who is all winner?  Or all loser?  Who stays in first place, and for how long?  Grant points out that the term “survivor” can instill superstition.  Understandably.  So, can one be a semi-survivor?  A sometime survivor?  A suffering survivor?  An aspiring survivor?  A post-survivor?  A part-time or temporary worker in the mutation factory?  So-so?  B-list?  Has-been?  Perhaps we are all senior rookies, or fledgling masters.

One can strive to survive, but is one ever “a survivor?”  Survival is a desire, an ambition, a goal.  Attaining that goal is a stroke of good fortune.  Whatever I call myself, I may live to an old age or die ahead of schedule.  Either way, survival is a momentary experience, not a fixed identity.

One of my tumors was said to be invasive, the other more domestic, resting contentedly “in situ.”  I did not see either growth as aberrant or intrusive.  They were  part of my physiology, and likely part of my DNA.  I accepted that they crashed the party, even though I did not invite them to stick around.  But I know my body is transient, and that impermanence is part of every life story.

How about being an “initiate?”  A “traveler?”  A “maven,” or “doyenne?”  Is there such a thing as a “cancer dancer?”  Indeed, could one conceive of  partnering one’s wayward insides rather than battling an alien attacker?  (Perhaps the shapeshifting cells think they are in the right.  “Occupy Rosie!”)  Can one be a cancer yogi, or a cancer bodhisattva?   Can the experience of being dismembered engender a sense of humility and belonging rather than a struggle for dominance and separation?

Clarissa Pinkola Estés refers, not specifically in regard to cancer but more generally, to the “scar clan.”  That seems a way to honor both what has been lost and what remains.

The arch  “vixen” is taken, as is the in-your-face “b**ch.”  (Not to worry.  The b-word horrifies me anyway.)  Maybe I could be a minx.  Or a high priestess.

Victim or survivor?  Bouncer or maître d’?

Cancer mouse, cancer cat?  Cancer shark?  Cancer rat!

Hmm.  While we’re fantasizing, maybe I can be a goalie, nimbly keeping the opponent at bay up until the second overtime period of the fifth game of the finals.

Jonathan Quick, L.A. Kings Photo by Kaz Andrew  Wikimedia Commons Click for original.

Jonathan Quick, L.A. Kings
Photo by Kaz Andrew
Wikimedia Commons
Click for original.

 

 

 

 

 

 

 

But it’s not all glory: let’s not forget the back story.  26 rounds of wind-up matches, and at last it’s opening night.  Game 1: a virtuosic refusal of the puck—but no, it ricochets off of footwear and gets by!  Missed signals,  32 deflections.  A setback, and then the longest game ever.  We prevail, but it could have gone the other way, couldn’t it?  Not even Gumby-like splits guarantee a win.

I know I am returning to the image of the champion fighting off the intruder, but at least there is a team involved, not just a lone hero hoarding the win. And the goalie’s goal is to fend off any goal.  (I can get with that; it sounds like Beckett.)  He does not seek an endpoint; he plants himself at yours and makes sure you don’t get in.  He’s a protector, not a colonizer: Mama Bear on ice.

Not to mention those extraordinary iliopsoas muscles.  If anything can keep cancer at bay, they can.

(I pause to feel grateful that I have lived long enough beyond cancer to discover hockey.  And to thank Martha and Grant for helping me find my inner goalie.)

A friend once used the term “cancer saint”  to describe the obligation she supposed I felt to be a perfect patient.  She was right, and I have aimed to to sin more ever since.  Another woman, a “breast friend,” asked, “Were you afraid you would flunk cancer?”  Actually, yes, I was.

As much as I resist the demarcation of carcinomatous identities, I have for efficiency’s sake coined (oops, maybe not) the term “cancer queen”: this is how I understand those who strive to ascend through the malignant ranks and reign supreme. To be the star, the “it girl”—to bask in admiration and preside over the club rather than seeking solace in sisterhood.  This is another result of commodification, I think; one has to produce the best-selling cancer characterization in order to ensure . . . survival?  But the celebration of the decked-out diva ensures our indifference to the humbly dressed second alto doing her own surviving in the back row of the chorus, not to mention the third-chair trombonist hiding beneath the stage and waiting patiently until the second act to play her lowly three notes.

Whom does the cancer queen serve?  Does she feed her subjects, or feed off of them?  Is there such a thing as a cancer vampire?  Probably.  After all, there are “real” cancer princesses, of the Disney persuasion. (I am not making this up.)

Let’s hope that the lifespans of Disney-derived mastectomy-scar cartoons prove short and that the women who have been asked to buy, or buy into, the fetish of the carved-up princess will persevere for a while.  And let’s hope that the next generation, already swimming in pink products, will see less cancer and less cancer swag.  Maybe these young ones will be shrewd and cunning, able to harness global warming to scorch rogue cells or reroute military drones to zap warriors’ tumors without being seen.  Maybe these soon-to-be women will be artful dodgers, mischievous tricksters, or fearless mavericks, and they will not have to use the term “cancer” at all.

Yes, I did say we’re all impermanent.

But there are better ways to stop surviving.

—Rosie Untied

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The Price is Life (And It’s Personal)

On today’s episode of The Price is Life, it’s . . .  Melissa Etheridge!

Screenshot 2014-10-22 11.49.05

 

 

 

 

 

It has been ten years since she was treated with cancer—”the [gasp] ‘I might die’ sort of thing.”  And she has a new album out, called This is M.E.!  [Entrance to wild applause and theme music.]

Dr. Mehmet Oz asks Melissa Etheridge about cancer:

M.O.: “I’m going to say this in a very loving way . . . You think too many women are having preventive double mastectomies?”

M.E.: “I think too many women don’t get . . . a . .. ch—I think too many women don’t understand the choice.  I think health . . . is going to be the Number One Issue of our generation.  This is what my doctors told me . .  that the ones that survive are the ones that make a change somewhere in their life: either personally, stressfully [was that “stress relief”?] or diet. So I just think that that needs to get out there in the works.”

M.O.: “You have a very wise set of doctors.”

M.E.: “Yes, I do.  Yes, I do.”

M.O.: “I love this album.  We’re so happy you are making music.”


Earlier, in June, 2013, in a Washington Blade interview purporting to be about music rather than politics, Melissa Etheridge was asked, “As a breast cancer survivor yourself, what did you think of Angelina Jolie’s announcement [about her preventive double mastectomy]?”  Etheridge replied,

“I have to say I feel a little differently. I have that gene mutation too and it’s not something I would believe in for myself. I wouldn’t call it the brave choice. I actually think it’s the most fearful choice you can make when confronting anything with cancer. My belief is that cancer comes from inside you and so much of it has to do with the environment of your body. It’s the stress that will turn that gene on or not. Plenty of people have the gene mutation and everything but it never comes to cancer so I would say to anybody faced with that, that choice is way down the line on the spectrum of what you can do and to really consider the advancements we’ve made in things like nutrition and stress levels. I’ve been cancer free for nine years now and looking back, I completely understand why I got cancer. There was so much acidity in everything. I really encourage people to go a lot longer and further before coming to that conclusion.”

A few days later, CBS news reported, “In a follow-up statement, released Tuesday to ET Online, Etheridge said, ‘I don’t have any opinion of what she “should have” done. All are free to choose. I only objected to the term “brave” describing it.'”


Some questions that have not been asked:

Why is a discussion about life-threatening illness presented as armchair chit-chat, with theme music reminiscent of  The price is Right? And why mixed with the promotion of an album?

Why is the host’s focus on the “emotions surrounding” the choice to stop chemotherapy rather than on the medical factors (including life-limiting neuropathy) involved?

Why is a lay person asked to offer opinions on the frequency of preventive double mastectomies and of another celebrity’s medical care?  Why is this described in headlines as her “stance”?  Why is Etheridge’s comment described as a “diss” of another woman?

Why is a BRCA2-positive cancer patient not challenged by her physician host when she suggests that food and stress, rather than genetic mutation, nurtured  her “aggressive” tumor?

Why does there need to be a competition between only two possibilities: a “fearful” choice of preventive double mastectomy and a choice to cease chemotherapy and cook brussels sprouts?  (And would you really want to win the Cancer Olympics?  What is the prize?  Isn’t it a little more like poker than fencing?)

How can one identify “personal choice” within a culture that promotes celebrities’ opinions on medical protocols that could risk others’ lives?  When women are set against one another in discussions of their treatment options, encouraged to criticize one another rather than to learn from one another’s experience—or, better yet, from medical expertise?  When “bravery,” rather than medical outcome, is offered as a measure by which to evaluate a decision?  When “emotions,” rather than information, are the focus of difficult choices, such as stopping one form of treatment due to debilitating side effects?  When a lay person repeatedly mentions “stress” as a cause or contributing factor, all the while adding to the confusion surrounding women’s (and others’) health—which itself causes stress?  When a patient, by virtue of her celebrity, is supported in inventing and promulgating medical fictions—as the saying goes, she is entitled to her own opinions, but not to her own facts—in place of medical expertise?  Where she is asked what she “thinks” and “believes,” as if these personal intuitions and fantasies are legitimate?

Why does the response to Etheridge’s comments center around the notion of bravery rather than around her outlandish contentions that she knows why she got cancer, and that “it’s the stress that will turn that gene on or not.”  (How does on turn a gene on and off?)  Why is it that the cultural constructions of cancer (bravery, stress, intuition, celebrity, policing women’s bodies, setting women in opposition) are neither acknowledged nor unpacked? How is it that Etheridge challenges the cultural construction of courage only by questioning its definition—not by questioning its relevance?  How is it that over the course of sixteen months (not to mention the previous nine years), she has not educated herself or been informed by others so that she could speak more intelligently?

Why, when invited to comment on Angelina Jolie’s surgery, does Etheridge presume to measure the courage of the individual rather than to delve into the cultural factors that confine the discussion around cancer and women’s health?  She states that she objects not to Jolie’s choice, but to the notion that it was “brave.”  Why not go a step farther and ask whether the description of women’s dismemberment as courageous might be related to the widely accepted discussion of and penetration of into women’s bodies, something that is evident in every corner of popular culture?

But why would we expect any more of a singer-songwriter in the public eye?  And if we do not expect more of her, why does she continue to speak about this topic on national television?  Why is she invited to do so by programs purporting to inform the public about medical issues?  What is being sold here, bundled with Etheridge’s latest recording?

The title onscreen reads,” How beating cancer made me a healthier, happier person.”  Wow, I am supposed to be healthier and happier after cancer?  That’s . . . stressful.  Or is that a “personal choice” too?  Or is it only the chemotherapy that I get to make a personal choice about, while remaining obliged to celebrate my improved post-cancer quality of life?


M.E. says, “If you are afraid of cancer, of dying, of fear—if this is where you are putting your thoughts and emotions, your life might be guided in that way.  It’s what you focus on.   I have the BRCA2 gene so I’d better be diligent and vigilant about my health, my stress, about my food.  I am not here to criticize anybody’s choices, but I myself would not call that [preventive double mastectomy] a courageous choice to my daughter.”

M.E. expresses a desire “to be healthier” and “to understand how I got this in the first place.”  Following the reassurance of her doctor, who predicts that she will be “fine,” M.E. asks, “I believe I’m going to be fine, so what is this journey all about then?”  

M.E., let’s discuss the potential ramifications of a celebrity accepting an invitation to make blanket statements that may affect others’ “personal choices.”  Say someone who is BRCA2+ views this episode and vows to “make a change somewhere in their life,” opting for brussels sprouts and breasts and eschewing prophylaxis and prosthetics.  What would the “emotions surrounding” your potential influence on this individual’s “personal choice” be like?  Would your feelings differ if the patient died prematurely, leaving behind her loved ones?  Even though you claim to understand why you got cancer?  If your own genetics are less significant than your diet and mental state, do you think digesting those comments could encourage a tumor to grow?  If your medical “stance”  encouraged a BRCA2+ woman to eschew “fear,” and then she died, would that cause you stress?  Would you say it is too difficult to discern what influence your comments might have had?  Or is it possible that her “personal choices” could be “turned on” and off by your input?  If genes can be toggled by stress, why not tumors by your wisdom?

Indeed, what is this journey all about?  Presenting good fortune as individual success?  Capitulating to a culture that circumscribes women’s behavior and then diagnoses that behavior instead of bodily illness?  Promoting fantasies of individual “choice” by trading on an unacknowledged contention that women’s lives are driven by personal choices, unmediated by culture—even as you contribute to that culture, making your own “personal choice” to become complicit in undermining women’s health care and overall well-being?

Or is it about selling your album?  Which is titled This is M.E.

How brave is that, M.E.?

—Barbara White

Note: Although I have not tested positive for any genetic markers of breast cancer, every medical professional I have consulted has expressed a conviction that I bear a predisposing genetic mutation that has yet to be identified.  Despite this informed wisdom, and despite my biological family’s extraordinarily high incidence of breast cancer, at the time of my own diagnosis I opted to undergo a single mastectomy.  I discontinued Tamoxifen after a few months due to life-limiting side effects.  In other words, my “personal choices” have not been unlike Etheridge’s.  For myself, I did not want fear of future illness, no matter how likely, to determine my treatment; however, not all would describe such as course of action as “brave.”  Nor would I use that word myself.

Update, November 11, 2014:
See Liz Margolies, L.C.S.W., in Huffington Post Gay Voices,
“Melissa Etheridge Got It All Wrong.”

 

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