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Neuropathy and Shopping for Shoes

Wednesday, March 28, 2012

The other day my friend and I went to one of those no-frills shoe stores. You know the kind, those warehouse-looking buildings that sell every shoe imaginable except the ones in your size. Rows and rows of sample shoes were displayed on tables that ran the length of the store, while all available sizes were stacked under the tables and generally consisted of two medium-size eights, one size 12 and five pairs of wide-sized twos. Since I wear a 9.5 shoe with a 6AAAAAA heel, and have neuropathy in my feet, nerve damage caused by chemotherapy, I was pretty sure this was not my kind of shoe store.<PREVIEWEND>

Against the far wall of this warehouse emporium were running shoes, walking shoes, sensible flats and open-toed sandals, while the middle of the store displayed stacked heels, high heels and spandex ankle boots with styles called Santa Fe and Sandstone, names probably chosen by the same people who name paint colors. On the other side of the store were fashion forward shoes with wireframe, six-inch heels that looked more like scale models of Lady Gaga’s outrageous piano shoe.

Since this was a no-frills store, and there were no mirrors, women were asking total strangers what they thought about the shoes they’d picked out. A woman with big hair and shaved eyebrows--I imagined she ran an establishment called “Ruby's Beer, Wine & Setups”--asked if I thought her shoes would "drive Wayne wild." I ask you... What can you say to a sixty-five-year-old woman with hair the color of overripe mangos, who’s wearing clear, plastic Cinderella want-a-be's? Then there was the portly woman who found a pair of “breed-me, don't feed-me” shoes and who asked if I thought pink and gold snakeskin would go with white stretch pants?

I realize drag queen/pole dancer/platform stilettos are--pardon the pun--the height of fashion, but let’s get real, girfriends: How many of you actually own a pair of these stratosphere stilts, and if you do, when’s the last time you fell off your shoes? Don’t get me wrong, I love beautiful high heels, but my chemo-damaged, neuropathy-ridden feet can’t tolerate most heels for more than a walk to the car and back before the balls of my feet are in agony.

For those of you who don’t know, neuropathy is the medical term for painful nerve damage, usually to the peripheral nerves in hands and feet, caused by chemotherapy, radiation, excessive alcohol, diabetes, kidney problems or poor nutrition. While there are several studies on preventing neuropathy caused by chemo, none appear to be “the” solution, however there has been some success with the drug, Amifostine (Ethyol), as well as calcium and magnesium given before chemo begins. If you already have neuropathy from chemo, you might try soaking your hands and feet in cold tap water. DO NOT USE ICE WATER. As always, ask your oncologist what he or she suggests. Unfortunately, after neuropathy starts, many women are forced to stop treatment because the pain and/or numbness is so intense. The good news is that for most of us, neuropathy gradually gets better after treatment stops, although in my case, some residual symptoms seem to be permanent.

As the number of aging Baby Boomers continues to increase, millions more women will be diagnosed with breast cancer and chemo-related neuropathy, not to mention that we lose the fat pads on the bottom of our feet as we age. If only shoe manufacturers would realize there’s millions of women who need shoes other than ones that appeal to Snooki! So, all of you shoe designers, how about making stylish, comfortable shoes that don’t look like “Janet Reno does the lobby of the MGM Grand?”

PS: I love the comment said about the above photograph, “What’s more frightening: a purple dog or a pregnant Snooki in six inch heels?”

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The Healing Power of Music

Sunday, March 18, 2012

The other night I watched a rerun of Diane Sawyer’s interview with former US Congresswoman, Gabby Giffords, and her astronaut husband, Mark Kelley. The interview was the first time the public had seen Giffords since she’d been shot in the head at point blank range. Watching her radiant easy smile, I realized her healing journey has been nothing short of miraculous. Near death when she arrived at the hospital, Gabby Giffords suffered a major brain injury that necessitated temporary removal of a piece of her skull. The injury also forced her to learn to talk, walk, read and reason all over again, and surprisingly, the tool her therapists found to be most helpful was music.<PREVIEWEND>

According to scientists, nothing activates the brain like music, especially in the case of severe brain injuries like Gabby Giffords. Music has a unique multi-dimensional power to change the way our brain strings words together; it helps us learn to walk again, and it increases the dopamine levels that produce a positive affect on our sense of well-being.

Sometime last Fall, I remember singing along to Cyndi Lauper’s Girls Just Want to Have Fun on my car radio. At first my voice was tentative and soft, but it wasn’t long before I was singing with everything I had, and in that moment, I forgot James died. I forgot that most every area of my life was drenched in grief and betrayal, and in that moment, I wasn’t a widow or a breast cancer survivor, I was my usual happy upbeat self. Amazed at my happy outburst, I remember thinking that on some level, my healing had begun.

For many of us, healing is an ongoing process. Whether it’s physical or emotional, cancer, betrayal or grief, the torn and fractured pieces of our mind and body continue to knit themselves together, again. We gain strength and draw comfort from the prayers of those around us, the compassion of our medical team and from the examples of those who’ve gone before us like Gabby Giffords and Mark Kelley. Gabby and Mark underscore what many of us already know: When the life we planned is not the life we’re living, we must dig deep and summon the courage and determination to map out a new life.

In Diane Sawyer’s interview, Gabby Giffords and her therapists sang Girls Just Want to Have Fun, and in that moment, Gabby was radiant and whole. It made me think back to that day in my car when I sang the same song with joy and abandonment; how the healing power of that happy song lifted me out of my grief.

Music makes new pathways in the areas of the brain that control memory, emotion, even movement. Our body naturally wants to align itself with the rhythms of our environment. What rhythms are part of your environment? Are they the stories on the news about murders and robberies or, like Gabby Giffords, do you surround yourself with music and examples of courage and survivorship?

If you can’t remember the last time you sang at the top of your voice then it’s been too long, my friends. Like Gabby Giffords, we may be beaten up around the edges, but we’re not beaten.

Sing, dear ones, and heal well!

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What Are Breast Cancer Previvors?

Sunday, March 04, 2012

After testing positive for the hereditary BRCA2 breast cancer gene, Marion, one of my readers, recently made the brave decision to voluntarily remove both of her healthy breasts in an attempt to prevent breast cancer. When she subsequently contacted the American Cancer Society (ACS) about mastectomy/breast cancer support groups, they told her that since she wasn’t a breast cancer survivor, she wasn’t eligible to attend their groups. Needless to say, she was disappointed and outraged. As she put it, it’s almost “like the ACS thinks I had my breasts removed as a fashion statement!” While I wish the ACS had been more helpful and compassionate, I can suggest a great website, FacingOurRiskOfCancerEmpowered (FORCE), which which refers to women like Marion as previvors.<PREVIEWEND>

Previvors are survivors of a predisposition to cancer. Previvors have their own needs and concerns separate from those who’ve already been diagnosed with breast cancer. In fact, September 29 is Previvor Day and recognizes the unique challenges faced by those at high risk for cancer. Before any of you become overly concerned, over 90% of cancers are not caused by inherited genes, and not everyone who carries inherited cancer genes will get cancer. However, if you discover you carry one of the BRCA breast cancer genes, how far would you go to prevent the disease itself?

Since some inherited genes are also related to ovarian cancer, in addition to having a prophylactic double mastectomy, would you voluntarily elect to have an oophorectomy (removal of the ovaries) or a complete hysterectomy? Not surprisingly, many previvors are young women of child bearing age who face tremendously difficult reproductive decisions. It’s important to remember that none of these “risk-management” procedures eliminate all cancer risks, plus it’s of paramount importance you consult with an expert in hereditary cancers and risk assessment.

I didn’t discover I carried the BRCA2 gene until four years after my diagnosis, original mastectomy and six rounds of chemo. I also went against my oncologist’s recommendation that I not be tested for the BRCA genes because there was no history of breast or ovarian cancer in my family, plus he discouraged me because the test was expensive. Since my “little voice” has never let me down, I followed my instincts and was tested. When I learned I was BRCA2 positive, I didn’t spend much time wondering why I had the gene or which side of the family it came from. Instead, because there was an 87% chance I’d get breast cancer in my “good” breast, I had a prophylactic mastectomy two weeks later. Because one breast was reconstructed with a DIEP Flap procedure and the other has a silicone gel, my breasts are a bit mismatched, but I’ve never looked back or second guessed my decision.

If you or a loved one has been found to have a hereditary breast or ovarian cancer gene, or you’re a health care provider who treats high-risk patients, you might consider attending FORCE’s 2012 Conference this October 18-20, 2012 in Orlando, Florida. The conference features general sessions and workshops conducted by leading BRCA and hereditary cancer researchers, and it gives previvors the opportunity to meet and share their experiences with other previvors.

Yes, Marion, “you are accepted here,” because there are many ways we are survivors. I hope this has been of help to you.

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