One Woman At A Time

Two-time breast cancer survivor Alice Roosevelt

One by one

Breast cancer is an equal-opportunity disease. It doesn’t care if you are female or male, rich or poor, high or low, famous or infamous. It’s a behemoth. No matter how many research studies are conducted, how much pink merchandise is sold in its name, how many awareness groups and fundraising events are organized, it continues to afflict millions of women and men, turn metastatic, and cause hundreds of deaths, every day, every year.

It’s easy to feel helpless and overwhelmed, especially during October, when the pink saturation of the marketplace is at its peak. The behemoth that is breast cancer appears at times only exceeded in scope by the rampant exploitation of the disease as a corporate marketing tool. And yet ultimately, none of the pink products have managed to halt the disease in its tracks. For many of us who have had breast cancer, this October finds us suffering with an acute case of pink fatigue, trying mightily to steer the fragmented and often misguided awareness barge toward a better course.

In the meantime, however, the bottom line for anyone who has been dealt the cancer card is to live her life as best she can. Awareness is shallow when it promotes the myth of She-ro-ism, when its rosy glow misses the daily challenge of keeping body and soul together that each of us faces in cancer’s wake. For many, it requires every morsel of will we have just to keep a roof over our heads, pay our mounting bills, attend to a body that is forever altered, maintain some semblance of sanity. Survivorship is meaningless if our quality of life is shot to hell and back. For those with lifelong treatment side effects, for those with metastatic cancer, getting through one hour without pain, fatigue, disability or despair can be an almost insurmountable task. All the fundraising in the world is pointless if it doesn’t address these realities, if it doesn’t ease the challenging passage of those individual hours.

For those of us who want to help make a difference in some way, we sometimes forget that the survivor we need to take care of in the first place is ourselves. We are of no use to anyone if we are exhausted, miserable, depleted. Whatever our circumstances, our ability to help anyone starts with each of us finding our center, our personal definition of meaning and integrity. The next thing we sometimes forget is that the world is not necessarily changed in grand strokes and huge gestures. Ultimately, it is changed one person at a time, one moment at a time. The small actions, the personal effort to help one individual, the ordinary, daily kindnesses that lighten the burden of one hour, those are the things that add up, that can make all the difference at the end of the day. When we regard the enormity of making breast cancer disappear and don’t know where to start, it may be that we need to shift our focus from the global to the local, from the many to the few. One person at a time. Most of us don’t even need to find our local breast cancer group to make a difference to someone. She is someone we already know. And we have her phone number.

Shoes and hatboxes

This past weekend, one of the most helpful things I was able to do for a sister breast cancer survivor was to lend her a pair of shoes. It was Saturday night, October 1st, and I had arrived at a church hall in Oyster Bay, Long Island, New York, to participate in a local fundraiser for No Surrender Breast Cancer Foundation, which was started by my friend Gina Maisano.

Ten years ago, Gina was diagnosed with triple negative invasive ductal carcinoma. Five years later, after beating back the first tumor, she was diagnosed with hormone-positive invasive lobular cancer in the opposite breast. Prompted by her frustration at not being able to find the help and information she needed in one place, she started No Surrender, which provides information about every aspect of breast cancer and treatment, along with news about research, translated through her own lens into language that is accessible. In addition to the main site, there is a peer-support forum, a blog, and information about two Foundation initiatives. One, the Sister Corps, pairs an individual breast cancer patient with a survivor in her area to help her get through the day-to-day grind. The other, the Before Forty Initiative, works to make earlier and more effective breast cancer screening available to women who fall outside the standard guidelines, and for whom breast cancer is often deadlier. Gina also wrote a ground-breaking book, Intimacy After Breast Cancer, which provides practical information about dealing with our body image and our sexuality after we’ve endured this most unsexy of diseases. This year, it was recommended to the 1,100 doctors attending the 2011 ASCO Breast Cancer Conference. The book has a permanent link on my sidebar, and you can get it on your ereader.

Ten years later, Gina is still here, still knocking herself out every day to help us all, one woman at a time. When I was diagnosed three years ago, finding her website was one of the things that kept me sane and helped me enlighten myself. When I grew weary of the sniping and hysteria and inadequate, sometimes misguided administrative decisions on another peer support forum I visited, the No Surrender forum, gently and lovingly and wisely guided by Gina herself, was a welcome breath of fresh air. Gina runs No Surrender largely on her own steam and initiative, without an endowment, without corporate sponsorships that sell pink Mustangs or perfume, sometimes running on shoestring funds she has obtained by selling her personal belongings. Earlier this year, a local Komen affiliate turned down her $5,000 grant request to help her Before Forty Initiative, because, and I quote, “Susan G. Komen for the Cure’s current screening guidelines are not in line with what your organization promotes.” [see my previous post, Is There A Cure For Hypocrisy?] No Surrender is who Gina is and what Gina does, it is her mantra and raison d’être, and on Saturday night, I had the opportunity to meet her in person, after three years of cyber-friendship and love, as well as to meet some of the individual women she has helped.

Drawing on her past experience as an event planner, Gina organized what was to be her second annual Gala and Fundraiser. This year’s event would be a vintage fashion show, inspired by some of the famous women throughout history who had breast cancer. One of these women was Alice Roosevelt Longworth, the estimable first child of Teddy Roosevelt, who happened to grow up in Oyster Bay. This home would become the summer White House when her father was our 26th U.S. President, and the home and grounds at Sagamore Hill are now a national historic site, maintained by the National Park Service. Naturally, I planned to visit Sagamore Hill while I was in town.

I didn’t know all this when Gina began organizing this year’s event. All I knew was that she was planning a vintage fashion show, and looking for vintage clothing and breast cancer survivors who were willing to participate. If you know me at all, you might not be too surprised to learn that on one of my breast cancer retail-therapy excursions, I happened to purchase a vintage Edwardian day dress from a local vintage shop down the street from my home. And it was wearable and it fit me. So, I passed on this information to Gina, along with my eagerness to finally make the trek to Long Island and meet her in person to participate in the event. She readily accepted, and only then did she tell me that this year’s event would honor Alice Roosevelt Longworth, who was a young woman in the Edwardian era, as well as a two-time breast cancer survivor. I could wear my dress, in public, and represent Alice in her home town. Not only that, but one of the guests of honor at the event was going to be her niece and Oyster Bay resident, Elizabeth Roosevelt. The rest of the women in the show would be wearing vintage clothing to represent other women throughout the 20th century who had breast cancer, women like Ingrid Bergman, Greta Garbo, Bette Davis, Myrna Loy, and Jean Simmons. Wow!!!

Not only did I have to make hotel and ferry reservations, practice doing my hair in a Gibson-girl updo, figure out how to apply eyebrow pencil (which was very popular in the Edwardian era), and assemble such accoutrements as an appropriate hat and a parasol, but I had to fill the lace-up Edwardian boots of Alice Roosevelt! And the more I found out about Alice, the more I relished the task. I could write an entire blog post about her — and maybe I just will — but in the meantime, I refer you to this summary of her life by historian and writer Stacy A. Cordery, as well as this link about her from Suffice it to say that Alice was one of the most influential women of her time, and possibly the most remarkable and outspoken First Daugher ever. She was intelligent, articulate, savvy and humorous. Her autobiography, Crowded Hours, was hailed by reviewers as being filled with “insouciant vitality.”

The Accidental Edwardian

And so, wearing my trademark red patent, peep-toe high heels (yes, those very shoes in my blog icon) with the embroidered silk dress I’d wear during the reception before the fashion show, I arrived at the steps of Christ Church, in Oyster Bay. My updo and make-up were already done, and I was loaded down with a protective hanger bag holding my Edwardian dress and petticoat, plus my hatbox, plus a large shopping bag containing my high-heeled, lace-up boots, and my lace gloves, and my parasol, and several other items I might need, in order to do my best to reflect some of Alice’s insouciant vitality. But mostly, I was there to meet Gina in person after three years, give her a hug and a kiss, and contribute my time and effort to helping her raise money to keep No Surrender afloat. Eventually, my sister survivors and models gathered, all of us primped to the teeth, our hair styled, our faces painted in more make-up than most of us wear in a year’s time, in the church basement to don our vintage gowns and jewelry. Gina, our mistress of ceremonies, wore a gorgeous black cocktail dress, but predictably enough, her high heels were killing her feet after having spent hours running around to attend to last-minute details. She found a pair of slides somewhere and changed her shoes, but the slides didn’t go as well with her dress. As luck would have it, I’d brought an extra pair of black shoes, dressy but with only a tiny heel, in case my own feet wore out. “Here,” I said, “try these.” Who knew Gina and I wore the same sized shoes? They fit her, they were comfortable, and they went with her dress. And most importantly, they allowed her and her tired feet to get through the business of making her fundraiser a success, and thus be able to continue the vital help that No Surrender provides every day.

Sometimes, changing the world starts with the right shoes.

If you’d like to help Gina help someone with breast cancer, please consider sending No Surrender a donation.

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This entry was written by Kathi, posted on Monday, October 03, 2011 at 04:10 pm, filed under Making A Difference, Play, Survivorship and tagged , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

2 Responses to “One Woman At A Time”

  1. Excellent post, Kathi!! Gina and her initiatives and book all sound so awesome. She clearly is a special person who has touched many lives.

    BTW, I love this line from your posting: “For those of us who want to help make a difference in some way, we sometimes forget that the survivor we need to take care of in the first place is ourselves. We are of no use to anyone if we are exhausted, miserable, depleted. Whatever our circumstances, our ability to help anyone starts with each of us finding our center, our personal definition of meaning and integrity.”

    So true and beautifully said.

  2. Thanks, Beth. She’s tough, classy, gorgeous & smart, with a huge heart. It’s a privilege to count her as a friend. The web is so amazing, and so are some of the women we meet here & the connections we make with them. xxoo

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