“Whose Life Is It Anyway?”

Kathleen Kolb is a physical therapist, artist, breast cancer survivor, and writer of the blog The Accidental Amazon. With her permission, the Pink Ribbon Blues Blog republishes her recent essay “Whose Life Is It Anyway?” about the untidiness of breast cancer, the power and emptiness of symbolism, and the realities of living and dying with the pink ribbon disease.

Boom

As far as I know, I do not have metastatic breast cancer. But I cannot say that with absolute certainty. With most cancers, but particularly with breast cancer, you never do know whether your next scan, diagnostic image or lab test will tell you that the Stalker has returned and has invaded other parts of your body. For those of us who’ve had breast cancer, that awful possiblity is something we live with every day. For people who find out that their cancer has metastized, it’s like living with some kind of “dirty bomb,” an explosive device that combines the usual things, like dynamite, with a few unusual things like stray radioactive material that may spread unpredictably. When the metastatic bomb has been detonated, you are suddenly forced to spend a lot of time on a kind of endless search-and-destroy mission, with doctors trying to find out how far and where the schrapnel and debris have gone. And trying to remove it or destroy it without destroying you.

It’s bad enough having had cancer — and cancer treatment — once. But even after the cancer is “gone,” it’s hard to forget about it. First, there are those endless follow-up medical appointments you have to attend to make sure it hasn’t come back. Then there are the side effects of treatment — like brain fog, lymphedema, missing body parts, scar tissue, neuropathy and fatigue — that remind you that you had it in the first place. Then there are the other messes that cancer has made of your life — your untidy house, your inability to work full-time or even not at all, your strained finances, your strained relationships. There are the aches, pains and occasional symptoms of colds, stress and weariness that may be nothing but the normal stuff of life, but then again might not be normal at all. There are all the things you used to be able to do without a seeming care in the world that you either can’t do anymore or have had to curtail or modify in some way. I have friends who can’t draw or perform surgery anymore because neuropathy has damaged their fingers, friends who can’t sing or walk or pee and poop normally, or breathe without oxygen, or even eat because of cancer and cancer treatment. And even if we don’t have to live with these encumbrances, we have to slather on bug spray so that some hungry mosquito doesn’t set off an attack of lymphedema, or drown ourselves in sun screen because chemo drugs and radiation have made sunshine more dangerous. For most of us, there is the realization that there is no “normal” anymore, but some kind of new “normal” that we have to define for ourselves.

But when the metastatic bomb has gone off, what then? In her blog post, Cancer Catchphrases, Anna Rachnel talks about the struggle to maintain an identity that is not centered around cancer.

“…the fact is, a lot of my everyday life now is consumed with dealing with the stupid cancer. Cancer seems to be my job and I’m certainly a career girl. If I could resign from the job I would as it’s certainly not the life I envisioned for myself. Is cancer who I am ? No I don’t think so, but it sure does suck the life out of you and it’s a struggle every day to remember who you were before the stupid cancer barged uninvited into your life.”

Exit Strategy

What happens when you run out of options, when you are told that your own death is not merely a philosophical certainty, but a temporal one with a date attached? We’ve probably all played some variation of that game, “What if you were told you only had a year/a month/a week/a day to live?” What if it’s not a game? What if that bucket list you’ve been making now has a time limit? After the hot-air balloon ride, or the trip to Paris, would you add, “plan my funeral” to the list? It’s not an unreasonable thought, and it’s perhaps a generous one, to spend some time figuring out how you want to exit this life, how you want to be remembered, how to comfort the friends and loved ones you will leave behind.

The other day, Anna published a blog post about Pam Hermansen, a New Zealand woman with metastatic breast cancer, who planned her own funeral after being given a five month prognosis. Her plan included getting a simple coffin built, to save money, and having it painted by a friend in a way that would fit with her wish to raise awareness, to make her funeral a statement about the deadliness of breast cancer.

Her plan got a lot of media coverage last fall, including this article in The Press, a New Zealand news blog. In the article, she mentioned her twin sister, diagnosed with breast cancer in 2006, just four months after her own diagnosis, as well as a brother who died of bowel cancer. The article stated that at the time of its publication, her sister’s cancer was still “in remission,” but Pam’s had spread to her bones and her liver. When she was told she had five months to live, Pam began to plan how she wanted to die, saying that “breast cancer had been a major part of her life so she wanted it represented at [her] funeral.” So saying, she had her friend and artist Lyn Taylor cover the hand-built coffin with painted pink ribbons and thirty pairs of breasts.

A more detailed article, under the tag Future Designs, is published in a New Zealand breast cancer journal called Pink Magazine. In it, Pam described how, as many others with cancer unfortunately experience, “her partner left her shortly after her diagnosis, telling her he couldn’t cope,” and leaving her to develop a new appreciation of the friends and family who were truly supportive. She explained that when her treatments no longer helped and her prognosis worsened, it was a palliative care nurse who suggested that she plan her funeral. “I feel lucky to have been able to organise it,” she said. “I want a nice casual funeral and I’ll ask guests to wear pink.” When asked how she felt when she saw the finished coffin, she said, “It doesn’t frighten me…It represents what I’ve been through and will hopefully help raise awareness of this incredibly dangerous disease.”

The Trouble with Symbols

When I first read Anna’s post about Pam and her coffin, my first reaction was sadness. And not just a sadness at the loss of another person to breast cancer, but one threaded with a consciousness of irony and a kind of rueful dismay that this ultimate symbol of pink would be allowed to stand, by default, for her life as well as her death. Surely, I thought, there was more to Pam Hermansen’s life than breast cancer. Surely there was more to learn about who she was before 2006, when she was first diagnosed at age 45. Surely, even in her last five years, however much metastatic breast cancer took over, there were other moments spent enjoying the time she had left. As she said in the Future Designs article, “I’m not the girl I used to be and my social life isn’t what it was, but I do different things. I visit libraries and art galleries and go for drives in the mountains to soak up the beauty of nature. I don’t take anything for granted.” Would there be photos of those mountain drives at her funeral? Would there be snapshots from her “catch-ups with the girls” and her “weekends away?” I hoped so.

My dismay only deepened when I discovered that it was a lot harder to find out when Pam Hermansen died than it was to find out about her plan to be buried in a pink coffin. But I was finally able to request a copy of her obituary notice from a New Zealand remembrance site, A Memory Tree. A summary of the obit arrived by email the next day and included the following details.

Pam Hermansen died on March 10th of this year, at age 49, “after a long courageous journey … surrounded by family.” Her funeral was held on March 15th at the Woolston Club in Christchurch, New Zealand, at which “it [was] Pam’s wish that a symbol of pink be worn.” She left behind her twin sister Trish, as well as her mother Bev, her grandmother, her other siblings, her cousins, nieces and a nephew, her aunts, uncles and many friends. There is no mention of her pink-ribbon-and-breast-bedecked coffin. There is no mention of photos or mementos or eulogies. It was suggested that memorial donations be made to New Zealand’s Breast Cancer Foundation. At the end of the obit, there is a statement by friends that Pam ” … will always be with us in song .. [her] beautiful voice will entertain wherever she may be.”

I like to think that perhaps some of Pam’s favorite songs were played at her service. I like to think that Pam’s friends will remember her for singing beautifully, not just for dying tragically. I like to think of her advice about coping with metastatic breast cancer, quoted in one of the above interviews, “to make the most of every day. Carry on […] and just enjoy life. I do. I don’t care if it’s raining any more.”

I couldn’t help wanting to know even a little more about Pam Hermansen than the pink symbol she was buried in. I’d rather think of her enjoying a rainy day, perhaps singing a comically appropriate song — “Singing in the Rain” maybe, or “Raindrops Keep Falling on My Head.” I just needed to know that her life meant more than the disease that killed her.

 

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3 comments to “Whose Life Is It Anyway?”

  • Thoughtful and provocative, Kathi. I thank you:)

    Thanks for more information about Pam, too. Reading her story and family history raises another question about genetic cancers and “awareness,” grasping at the ribbon instead of information that may have helped her family. It’s devastatingly sad to me.

    jody

  • Mary

    I can only hope that Pam was being facetious, with the coffin, and did not intend that the “pink” philosophy define her. I agree that “grasping at the ribbon instead of the information” is tragic. Reminds me of the merry go rounds of my youth. Who doesn’t want the golden ring as opposed to the reality. We do get to choose which is just our of our reach.

  • Mary, I truly don’t think she meant it to define her. I do think that she just wanted to have the last word, as it were, and perhaps didn’t know what other symbols to use.

    It is sad, Jody, and perhaps, in an ironic way, tells us more about how hard she struggled to keep her identity, apart from having cancer, when having cancer took over so much of her last years.

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

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