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Ask Ada Explainers

Ask Ada: ‘When Should I Tell A Date I’m Disabled?’

In our new advice column, Ada explains the best way to reveal an invisible disability when dating, and helps a husband understand his wife's decision to undergo a life-changing surgical procedure.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Do I Tell My Date About My Invisible Disability?

“Dear Ada—Reentering the dating world with an invisible disability is difficult. I’ve had mixed results: scaring people off by revealing it too early on or “being manipulative” by not disclosing it for what they perceived as a long time (~2 months, casually seeing each other). Any advice on navigating this situation?” – Sincerely, Brooke

Dating is one decision after another: What should you wear? Where should you go? How long should you wait to follow up for a second date? An invisible disability forces an additional question on you: When should you mention your diagnosis?

I wish I could tell you that there was a formula: for example, if you’re set up with your date through a friend, disclose your disability on the second date, but if you meet online, wait until at least the fifth. But unfortunately, there’s not, just like there’s no clear formula in most dating dilemmas.

I can, however, tell you that you’re wasting your time by keeping the information to yourself. This isn’t to say you should introduce yourself by saying something like: “Hi, I’m Emily and I suffer from Endometriosis!” But bringing up the topic early helps you weed the good dates from the bad ones.

Disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of.

I’d recommend disclosing your disability as soon as you’re sure that you’d like to continue getting to know the person you’re out with. You’re not determining if you want to marry them, just whether they’re worth the disclosure.

That answers the ‘when’ but what about the ‘how’? How should you reveal an invisible disability to your date?

Well, the truth is that disability shouldn’t be some shameful secret. It’s a regular part of your life, and that means the best way to disclose it is for it to come up naturally. So if, for example, you have Crohn’s disease, a good time to disclose that would be after you described your food allergies to the server. You could then follow-up by mentioning to your date how much you’ve learned about food since your diagnosis, then let them ask questions, guiding the conversation along when need be.

The bottom line is that disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of. Presenting your truth early and earnestly allows your date to process the news with understanding and compassion. If they don’t, then kick ‘em to the curb and try again.

My Wife Wants To Undergo A Double Mastectomy. Help!

Dear Ada—Recently, my wife of three years discovered that she had the BRCAI mutation, which makes it statistically much more likely that she will get breast cancer. Her mother and grandmother died of breast cancer, so my wife wants to get a preventive double mastectomy. But I’m not so sure. I’ve tried to talk to my wife about it, but she’s adamant there’s nothing to talk about: even though she doesn’t have cancer yet, she’s made up her mind, and it doesn’t matter what I say.

Suffice to say, I’m struggling to accept her decision. It’s not that I’ll love her any less without breasts, and obviously, I don’t want to lose her to cancer. I also know that it’s her body, and ultimately, that makes it her decision. But choosing to go through such an extreme surgical procedure without really asking me how I feel about it hurts, and makes me concerned about our future. What other extreme measures might she choose without talking to me first?

What should I do? What is the right way for us to approach this?” – Sincerely, Sam

It seems as if your issue is less about the double mastectomy and more about the fact that your wife made this major decision on her own and isn’t listening to your concerns. It also sounds like you think she came to this conclusion too suddenly.

But I think the truth is that your wife has probably been weighing this decision for years. When your wife’s grandmother and mother died of breast cancer, she probably began researching her options, including mastectomy. When it was confirmed that he was a carrier of the BRCA1 mutation, your wife’s decision became clear. It isn’t that she’s taking this decision lightly, it’s that she’s had a lot more time to come to terms with the emotional and physical transformation that will follow removing her breasts.

This isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.

Meanwhile, you’re only processing all of this for the first time. You don’t have the intimate knowledge she’s gained about breast cancer over the years, and because of that, you’re having a hard time grasping her train of thought. It’s not that she is trying to shut you out of the decision-making process, it’s that you are both literally at different stages of processing the news, without realizing where the other person is at.

While your wife is ultimately the only person who can make a decision about her own body, you both still need to try to come to a common understanding as to why she’s making this choice. So ask her to educate you, and explain how how she came to her decision. Tell her you love her, and accept her decision, but be honest about feeling left out, and concerned about what a failure to communicate productively about major life-decisions might mean in the future.

And then, once she explains? Respect her decision, and support her however you can. Because like you said, this isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Essays

Can You Take A Vacation From Cancer?

When my family took a trip to the beach to take a break from my diagnosis, we discovered what vacations can and can't do to rejuvenate the soul.

The bulging suitcases were comforting harbingers of what was about take place: a vacation. My family might have overpacked a little for a four-hour drive to the beach, but this wasn’t just a typical break from the workaday world. This trip was our stab at a cancer-cation: a sorely needed respite from the homewrecker I’d been fighting for the past seven months.

During that period, I’d been diagnosed with breast cancer, undergone a mastectomy and an additional surgery to remove some lymph nodes, and received 36 doses of radiation. This litany of medical interventions sounds almost laundry-list, but it didn’t feel routine. I felt insanely self-conscious about how I looked, and I often felt overwhelmed and exhausted by the need to put on a happy face for my children, ages 4 and 7.  We’d explained to them in an age-appropriate way what was going on, but no way was I going to expose them to my physical pain, emotional depletion, and fear – hell, that shit was barely suitable for the grownups.

Hence, the cancer-cation. We headed out on the open road in hopes that we’d get a break from talking about it, thinking about it, and in my case, dreaming about it. I longed to busy myself with everyday problems like whether or not the kids had enough sunscreen on or whether I’d remembered to put my reading materials in the beach bag. We wanted to turn cancer off, even if just for a week.

A Geographic Cure for Cancer?

It turns out, though, that it’s harder to escape cancer than just driving away from it.

That was something we discovered after just an hour on the road, when I turned the knob of the dial to NPR. Fresh Air was on, one of our favorites, but after just two minutes, Terry Gross announced that she’d next be talking to a folk singer who had been diagnosed with breast cancer, followed by an obituary of a well-known author who had recently died in her 80s of… you guessed it.

I’d never turned a radio dial so fast in my life. Polka medley from a Lawrence Welk album? Death metal at top volume? No problem. Just anything but more cancer.

Next, we stopped at an ice cream shop to stretch our legs. I was choosing my flavor (always Oreo) when the woman who was scooping my cone asked me if I had breast cancer. I said I did, and in earshot of my kids, she said: “Oh that’s awful, my grandmother died of it.” Lead balloon #2 dropped.

This, here, was a reminder of what a carefree life was supposed to look like.

That evening, as we settled into our beach condo, we felt free and happy in a way we hadn’t for nearly seven months. Doing “normal” things like walking the beach at sunset and eating seafood for dinner made us nearly giddy with happiness: this, here, was a reminder of what a carefree life was supposed to look like.

After we got the kids down to sleep, we decided to start watching John Adams, a miniseries about the second president’s life. A certified history geek, I couldn’t wait to put my feet up and dive in. But even here, cancer found me. I soon learned that John Adams’ oldest child, Abigail, was diagnosed with breast cancer at 46. (I was diagnosed five days before my 46th birthday). Worse, the episode detailed her gruesome mastectomy, colonial-style: in-home, with crude tools, no anesthesia, and her family serving as surgical assistants. I ran to the bathroom, hyperventilating.

Wherever You Go, There You Are

I think it was then that I realized you can’t take a vacation from cancer. I’d run away to the beach in a vain attempt to forget the disease, but there’s no geographical cure for cancer. Jon Kabat-Zinn was right: Wherever you go, there you are.

I’d run away to the beach in a vain attempt to forget the disease, but there’s no geographical cure for cancer.

But that’s not to say that my vacation was a failure. I’d take that trip again in a heartbeat, because there was precious value in distancing myself, and my family, from the fractured reality we’d been living for more than half-a-year. Sure, cancer was always there to remind me that it existed, but our family still needed the normalcy of a vacation: a week of natural beauty, a bathtub with fish on the shower curtain, and the reminder that there was life beyond cancer, even if we weren’t quite there yet.

Essays

To Tattoo Or Not Tattoo? After Breast Cancer, That’s The Question

After a mastectomy, I felt mangled and ashamed by what I had lost. For me, micropigmentation was the answer.

Being naked isn’t as much fun after breast cancer. Or at least it wasn’t for me.

The mastectomy, radiation, and chemo port scars that are normally covered by your clothes are revealed, and they can be a painful reminder of not only what your body has gone through, but the sexiness you lost along with your breasts. What’s important to remember is that there are things you can do to feel good about your body again. Just sometimes, it takes doing something that sounds weird at first.

Choosing Double Mastectomy

When I was diagnosed with an aggressive form of breast cancer at age 39, I learned I was a carrier for the BRCA1 mutation which makes women four times more likely to be afflicted with breast cancer. In total, in treating my cancer, I had 22 rounds of chemo, 7 surgeries, 11 infections, and 69 blood tests. So I decided to have both breasts—not just the one with the tumor–removed as a preventative measure, so I’d never have to be poked and prodded this way again.

I’ve always had large breasts, so the question of whether or not I should undergo breast reconstruction after chemo was one I considered carefully.

I’ve always had large breasts, so the question of whether or not I should undergo breast reconstruction after chemo was one I considered carefully. It made me ask myself: “Do I need breasts? Why?” I briefly considered going totally flat-chested, because a style icon of mine–the parent of a close, dear friend–appears to have no boobs, because she is so tall and thin. I had the tall thing going for me, but it seemed like too much of an overhaul since large breasts have been a part of my curvy-gal identity for so long—it felt like they made me “me”.

A woman with short brown hair in a red shirt.

Author Mary Ladd.

I signed on for a DIEP mastectomy surgery because it would be a two-fer. The procedure would remove my breasts and replace them with fat taken from my stomach, instead of implants. So not only would the tumor in my left breast go away, I’d technically get a tummy tuck. Win-win.

Losing A Piece Of Me

But after the DIEP mastectomy surgery, though my breasts were as big as they ever were, an unfortunate consequence of an infection from my surgery was that I lost my nipple to necrosis. Both breasts were left with angry-looking slashes, and looked damaged to me. And even though I had a loving partner who would tell me I was still beautiful, I didn’t feel beautiful or ready to be naked.

This, I would later learn, is a normal way for women to feel after treatment for breast cancer. One in four women worldwide will get breast cancer, and afterwards, many feel mangled and ashamed. In cases like mine where a nipple has been lost, there are surgical prosthetics—silicon nipples, embedded under the skin—but often, the results of the mastectomy leave the patient with chest skin that is too tight to accommodate another surgery.

One in four women worldwide will get breast cancer, and afterwards, many feel mangled and ashamed.

But in these cases, I learned there’s another option. Post-mastectomy tattoo and micro pigmentation. Micropigmentation is akin to permanent make-up, when pigments are injected just below the dermal skin surface. The needles and ink used in micropigmentation are more specialized than mainstream tattoos, but the process itself is similar.

Finding My Final Mile

Not having a nipple felt humiliating. So months later, it felt like kismet when I was put in touch with Cathi Locati, a trained fine artist who is now a “painter of people” based in the Seattle area. It was exciting to look at her “before” and “after” online patient photos, where I saw relieved smiles. Her company is called Final Mile because getting inked is the final way to restore the chest area for mastectomy patients.

Getting a nipple tattoo to replace a ‘real’ one doesn’t sound like it would look convincing, and a lot of time, it isn’t. On her site, Locati has images of amateurish, pepperoni-like tattoos as a comparison to the work she does, and the results aren’t impressive. But Locati’s work looks surprisingly realistic. As I considered hiring her, I also learned that nipple and areola tattoos are covered by insurance via the Women’s Health and Cancer Rights Act of 1998, so I would be reimbursed for most of the expense.

“I know firsthand that scars on the bodies of women after mastectomy can be damaging to the soul,” she said.

So  ready at last to “bring the sexy back!”, I sent Locati three cell phone pictures of me topless.

Getting Inked

Over two sessions that are roughly two hours each, Locati blended and buzzed the skin on both breasts, bringing my missing areola and nipple back to life. While she worked, Locati played soft jazz music, and I lay on my back in a comfy animal print robe. As rain drizzled outside, I felt relaxed. I could feel myself transforming and healing as she used a needle to fix the discolored yellow skin where my nipple had once been.

During our session, she told me why she does this work. Earlier in her life, she, too, had survived breast cancer, leaving her with a breast reduction and scars that made her feel like a walking Frankenstein. “I know firsthand that scars on the bodies of women after mastectomy can be damaging to the soul,” she said. “What I love about my work is that I can see the sexiness and self-confidence return to my customers, minute by minute, as I work.”

And you know what? She was right. As she blended pigment on a palate, letting me pick which shades I liked best, I forgot for the first time since my diagnosis the sickness that once rocked my world.

You can feel whole again after breast cancer. You just need to explore your options.

As for the results? I’m really happy with them. Locati’s work tricks the eye . I still don’t have an actual nipple but from every angle, it looks like I do. Whoa. Since my left breast is about a half size fuller and rounder than the right one, she also did some contouring so that it’s hard to tell my breasts are mismatched anymore. She used pigmentation on both sides, so that the breast now look more like a matched set in key areas: the areola and nipples are aligned and seem to be the same size. Another whoa.

Conclusion

Today, thanks to Locati, I feel whole again. I no longer cringe in disgust when I’m soaping up in the shower, and I once again feel sexy with my partner enough to leave the lights on when we’re intimate. And I’ve come to learn that this “after breast cancer” success story is not one that gets told enough. You can feel whole again after breast cancer. You just need to explore your options, and not be afraid to think outside the box.

Introductory photo of Cathy Locati. 

Essays Uncategorized

How I Became A Pink Person

I never really liked the color pink. But then I was diagnosed with breast cancer, and pink became the color that connected me to fellow survivors.

The first time I saw what cancer looked like I was in a science museum with my kids. The exhibit, which focused on microbes, had floor-to-ceiling images of cancer cells and microscopes set up to take a closer look at these rogue cells. I was fascinated and horrified all at once.

This was a few months after I was declared NED, or “No Evidence of Disease,” after a three-year fight for my life. In November 2012 I was diagnosed with Stage IV inflammatory breast cancer. And standing there in the windowless space, staring at the spiky microtentacles of the cancer cell, brought me back to the moment I found out I had breast cancer.

My mind could not process this invisible thing that was ravaging my body. Hearing the doctors talk about cancer cells and tumors and the rate of growth was overwhelming. How could these cells—this cancer—be doing all this damage all while I was at the park with my kids, brushing my teeth, making dinner? Seeing a scan or reading a chart detailing my tumor’s cellular makeup didn’t make it any more real.

Becoming A Pink Person

Enter the color pink. I had never been a pink “person.” It was just another color, something I associated with candy or ballet tutus or my grandmother in Florida. But suddenly pink became something tangible, something to touch and to see when everything else in my world seemed either colorless (chemotherapy) or invisible (radiation). Pink became the color of my cancer, the color of my world.

When I see a pink ribbon on a shirt, on a license plate, or on a suitcase at the airport, I can say: yes, that person has felt it.

And it gave my family and friends and those around me something to rally around, something to say: this is what I’m fighting for.

Pink did something else. It gave me a touchstone to other patients and survivors. People don’t realize how isolating and lonely it is to be so ill, how you can be constantly surrounded by people but feel so alone. When I see a pink ribbon on a shirt, on a license plate, or on a suitcase at the airport, I can say: yes, that person has felt it. Felt it themselves, watched someone they love suffer, supported someone into survivorship, said a heart-wrenching goodbye. It’s almost a physical sign: we’re all in this together.

We don’t, by contrast, bond over cells or, worse, crazed tentacle-covered blobs.

A Color That Connects

When I see pink, I always ask: are you a survivor? I feel a connection, even if it’s just for a few seconds. I have a collection of pink pins given to me by total strangers who support breast cancer research. One is a slim metal pin studded with deep pink rhinestones, a gift from a woman in a restaurant in California. Another is a soft, light pink fabric ribbon from a flight attendant in New York who wore it to support her colleagues. One is from a march in San Jose, an oversized neon pink metal pin that takes up an entire buttonhole on my shirt. I treasure them but also feel it’s my duty to pass them on, like a baton in a relay race. For me the color pink is a reminder that we are all fighting, recovering, persevering.

When I see pink, I always ask: are you a survivor? I feel a connection, even if it’s just for a few seconds.

Should I embrace another color now that I’m in remission? Something classically optimistic like green? Or purple, the universal color of cancer survivorship? People ask me this. But the color pink and breast cancer will always be a part of my life in some capacity. I have the BRCA gene that puts my kids at risk for cancer if they test positive for the gene. That makes me pink pretty much forever. To me it’s a reminder to be vigilant, and to never forget. Last year, 250,000 women in the U.S. were diagnosed with invasive breast cancer.  More than 40,000 women are expected to die from breast cancer this year in the U.S.

Until that number is zero I will be wearing pink, in all shades.

Essays

Breast Cancer and the Mom-God Fantasy

When I elected to have my breasts removed because of the BRCA I mutation, my twin daughters had to suddenly come to terms with my mortality.

I have the BRCA I mutation, meaning I had an 87 percent chance of developing breast cancer. After my preventative bilateral mastectomy, I now have a two percent chance. I think I made the right call, but even so, deciding to go through with surgery when there was nothing technically wrong was a grueling choice for me and my family… one that had unexpected ramifications for my relationship with my kids.

After my BRCA I mutation was identified, my husband and I had several conversations about whether it was better to get surgery to avoid a cancer diagnosis, or wait and hope for the best. It was a difficult choice. If I waited and did get cancer, I would have to get the surgery anyway, on top of chemotherapy and radiation. The combination would leave me sick and unable to take care of the household or my children for several months even in the best case scenario; in the worst case scenario, it could have killed me.

An Impossible Choice

After my BRCA I mutation was identified, my husband and I had several conversations about whether it was better to get surgery to avoid a cancer diagnosis, or wait and hope for the best. But how to tell our nine-year-old twins?

We decided to have the surgery. But how to tell our nine-year-old twins? Ultimately, we decided to tell them a week before the surgery–not too far in advance that they’d obsess, but not so soon to surgery as to give them an awful shock.

It didn’t work. My kids suddenly worried about me in a way they’d never had to worry about anything else in their lives. It’s come out in panic attacks, failing grades, angry outbursts, and emotional upheaval.

On the one hand, my children were scared for me. I’ll never forget seeing a page from an assignment my daughter had to do around that time for school. It was supposed to be an assignment to imagine a day in their parents’ lives, but her sheet was filled from top-to-bottom with just the words “PLEASE DON’T DIE, OH NO, HOSPITAL, PLEASE DON’T DIE” over and over again. But they were also angry at me, because suddenly, they realized that I could die. For the first time in their lives, they were forced to view me as a human being. I was no longer immortal Mom, the all-encompassing, immovable presence in their lives. Instead, I was reduced in their eyes to just another lady who could die, and they felt betrayed.

A picture of a mom with two twin nine-year old girls posing with a shaggy scotty dog.

Darlena Cunha, her two twin daughters, and their dog.

In My Daughters’ Eyes, Suddenly Mortal

Slowly, as I finish up my recovery, we are getting back to where we were, but their lives changed that day, not just mine. I went in looking one way. I came out swollen, bruised, and with drainage lines attached. Their dad takes them to school now—something that had never happened before—and we’ve been living on take-out until I could start cooking again. The girls see me unable to perform simple tasks, and it’s taking a toll on them. It makes the surgery not a temporary blip in my immortality, but a constant reminder that the definition they had of me was wrong.

Worse, they now know that they, too, can get cancer. That their genes, too, may contain ticking time bombs. They bombard me with questions I can’t answer: Will I still get cancer? Do they have it? Will they get it? How will they know? Will they have to lose the breasts they haven’t even developed yet someday? Will they die? In their eyes, my surgery hasn’t just robbed me of my immortality: it’s robbed them of theirs.

My kids suddenly worried about me in a way they’d never had to worry about anything else in their lives.

I’m almost completely healed now. I’m cooking again, and doing laundry. I’m here to define ‘infiltrate’ and ‘stealthy’ as my kids take on difficult mystery reading. I can lift my small dog again and wash down countertops. But getting back our family’s emotional flow has been difficult. I sometimes have to remember not to be angry at my children for being angry at me.

Leaving Behind The God-Mom Fantasy

What I’ve learned is not to expect too much, to be happy about little things and bring in joy when I can. So often, we deal with health crises, and nothing, really, can shake up a life more, but in accepting that we cannot change what we must walk through, that we cannot quicken the pace or hide the strain, we are setting ourselves and our families up for a solid recovery, not of the body that had been hurt or ill, but of the relationships tested in the distress of humanity.

In the end, though, I think this experience will make us all stronger, because it helped my family in a way I never knew we needed help. The more time that passes, the more I realize my children had to give up the mom-god fantasy, and, honestly, so did I. Before my surgery, I tried to be everything to them, but during my recovery, they had to learn self-sufficiency. Where once I was waking them up for school and helping them get dressed, now they were on their own as I struggled behind the closed door of a bathroom to empty the plastic recovery drains.

My daughters may no longer view me immortal after my surgery and subsequent recovery, but I can at least be thankful that the experience has better prepared them for a time when I’m no longer here.

Q&As

Middle School Principal Vs. Pain

Breast cancer, multiple sclerosis, osteoporosis, scoliosis, and a little disorder colloquially called "the suicide disease." This former educator turned yogi isn't letting any of them get her down

Ilona Thomson was out shopping for rugs when she felt the sensation of electric bolts shooting across her face. She didn’t know it at the time, but the retired middle school principal had trigeminal neuralgia, dubbed “the suicide disease” for its intense, stabbing electric facial pains. It’s been called the most excruciating pain known to humanity.

Ilona Thomson.

Already, Thomson, 66, had been diagnosed with multiple sclerosis. And over the last 20 years, she’s also faced osteoporosis, scoliosis and breast cancer. To heal, Thomson had to come to terms with major lifestyle changes, including cutting her career short. But she’s embraced a new life, one where she focuses on healing.

Whether it’s yoga, meditation, diet changes, or tapping – a holistic healing technique Thomson believes in, in which you tap on specific points in the body – Thomson dedicates her days to pain management. But she also finds relief and purpose in helping others. Her volunteer work at nursing homes and her local synagogue have helped her forged community connections that have spurred her to push through the pain.

Thomson talked to Folks about what it’s like to live with trigeminal neuralgia, how her conditions impacted her career, her regimen of self-care, and how visiting nursing homes with her dog Maddie to volunteer with Alzheimer’s patients helped give her perspective.

How did your health issues start?

I was in my early forties. One day I was in the shower reaching for some soap, and one of my eyes went dark. I couldn’t see at all. I was frightened. I was supposed to go away for the weekend. I went to my doctor, and he said ‘it’s nothing, it’ll be fine.’ When I got back I went to a different doctor and got an MRI. I remember one of the technicians said it could be MS, and I freaked out, because to me that meant I’d end up in a wheelchair. At the time I was working a very stressful job as an assistant principal at a middle school that had gang and drug problems. I also had three kids of my own. Further testing ended up not showing MS. I took steroids and my vision went back to 20/20. Then after a while, it happened again. I had more testing, saw a new doctor, and he said I definitely had MS.

I remember one of the technicians said it could be MS, and I freaked out, because to me that meant I’d end up in a wheelchair.

How did your diagnosis impact your career?

It wasn’t until I turned 51 that I developed every MS symptom you could imagine. I noticed it when I was writing thank you notes to parents after they gave me gifts for Chanukah. My handwriting wasn’t right. I had trouble walking. I had huge bladder problems. I just felt horrible, and I was crying all the time. I was keeping it a secret because I was very ashamed that I wasn’t functioning.

At that point, I’d worked my way up to principal. My doctor said I’d feel a lot better if I stopped working. That never occurred to me. I broke down and wept. I ignored his advice and continued. Then, that summer we took our son up East to look at colleges, and I just couldn’t keep up. We got back and I decided not to go back to work. That was a very painful chapter. I was devastated about my job and career and health and felt very weak. I dedicated myself to self-care – eating well, exercising – and got my MS symptoms under control. Then, I started having strange pains in my face. It was trigeminal neuralgia.

What does trigeminal neuralgia feel like?

It’s the worst pain in the world. It started slowly. It felt weird in my mouth. I went to the dentist to see if maybe I had a chipped tooth. He said nothing’s wrong, but sent me to a specialist, and he also didn’t see anything. One day I was out shopping for rugs for my house, and the pain was worse. Then, it became unbearable. My husband took me to the ER because I couldn’t even spit without pain. I couldn’t even move. It’s like electric bolts. It came and went. One weekend, I was visiting one of my children in New Orleans, I was at dinner with her and a friend and I’d periodically have to stop talking. At home, if I was on the phone and it came on, I’d have to hang up. It started to become incredibly invasive. I know people with trigeminal neuralgia who practically have to stop eating. It really is horrible. I don’t know why the body sometimes turns on itself and goes so awry, but it does. It’s hard that there are so few answers.

How have you coped with what’s been called the “suicide disease”?

Medication helped, but eventually, I started looking for an alternative treatment. I tried a treatment where I wore a gigantic device around my head – the doctors said it would cure it, but it didn’t work. Then, I came across a doctor in Cincinnati who performs a procedure called a rhizotomy. They put a little wire through your cheek, locate the source of the pain, and basically fry the nerve. At first I said, “I’m never doing that.” But then I changed my mind. It’s very painful. You have to be awake. It was like being in a torture experiment. I was screaming. But then your face is numb, and you feel a lot better. Half my face is numb now, but you can’t tell. I started to wean myself off medication. I still have residual pain, especially at night, and I take some medication. I also meditate every day. I’ve done tapping. I’m very open to alternative treatments.

How has taking charge of your health and well-being helped?

On top of everything, I was also diagnosed with breast cancer. But, I was lucky. It was stage zero and discovered right away. It was a lot to handle though. I have a lot of motivation to try to be well. I have my children, my grandchildren. I have so much to be grateful for.

I have a lot of motivation to try to be well. I have my children, my grandchildren. I have so much to be grateful for.

I try to make decisions that are healthy for me and I’m open to anything. I started to do a lot of things that made me feel whole again. I started an MS yoga class. I changed my diet. I do yoga. I went to a Buddhist temple to learn meditation. I embraced my new life. I wrote out a schedule for myself: meditate, yoga, practice the piano. I also got bat mitzvahed. I became a board member at my synagogue. My community is very nourishing to me. I read a book about a woman with MS who was in even worse shape than me who found relief in volunteering. So, I decided to volunteer at nursing homes with my dog Maddie. I took her for training and had to take some night classes. It was very healing.

After all these years, everything I’ve been through, and the people I’ve met along the way, I keep coming back to the fact that we all have our issues. You really just have to be a warrior, and you have to learn a lot of self-care. That’s how you can prevail.

Essays

Kickboxing My Way Through Chemo

Kickboxing helped me find myself. Now that I'm fighting breast cancer, it's keeping me sane, and helping my body survive chemo.

If the gym is your church, like it is mine, you’ll understand. When something goes wrong–whether you need a place to forget, or an outlet to channel what you’re feeling–there is no place like the gym.

CKO Astoria, a kickboxing gym in New York, is my second home, and has been for the past four years. I met the most amazing people there, and most importantly, I found myself there. Lost in a sea of misery and depression, I literally punched and kicked my way to a saner me. So when I was diagnosed with cancer, I vowed that I wouldn’t let it get in the way of going to the gym. I was not about to lose myself again.

I’ll never forget that day, June 29th,2017, when I got the call and was told my opponent was breast cancer. When I spoke to the doctor on the phone in the middle of my workday, I paced like a caged tiger. Once I finally collapsed into a conference room chair, though, it was a different story. I felt like the wind had been knocked out of me. Luckily, through kickboxing, I’d had training on taking big hits: always exhale on contact, it makes the pain bearable.

Have you ever been in a fight and gotten punched so hard you lost your breath? That’s pretty much what being told you have cancer feels like. It’s like a spinning back-kick to the solar plexus. If you don’t know how to take a hit, it knocks you back and makes you beg for air.

Have you ever been in a fight and gotten punched so hard you lost your breath? That’s pretty much what being told you have cancer feels like.

After I started breathing again, I went back to work. There were so many thoughts running through my mind at this point, but I didn’t react. I couldn’t yet. Instead, when work was over, I went to the gym: it had gotten me through so much over the last four years, it would get me through this too.

Upon hearing I had breast cancer the owner of CKO Astoria kindly offered to freeze my account. Yet I was horrified.

“You’ll do no such thing,” I told him. “Your job is to keep me strong. That’s what I need from you.”

And that’s exactly what they’ve done. Like a good trainer, they’ve kept me strong and motivated as I fight my toughest opponent yet.

Chemo isn’t what most people expect; it’s certainly not what the movies show. Everyone’s treatment is different, everyone’s body reacts differently, and so does your mind. So when I started chemo, I didn’t know if I would be able to keep to my four-day-a-week gym routine, but I’d try my best. And the night before my first treatment, there I was, punching and kicking: doing burpees, pushups, laps, squats, thrusts, jab, cross, hook, elbows, roundhouses.

Nothing was going to phase me, because all I could see was the battle ahead of me.

 

Vicky Rego.

My first treatment came, and I was told I wouldn’t feel it until three days later–Saturday–when the steroids wore off and the poison sank in. I used kickboxing, punching, running, and lifting weights as a way to utilize the otherwise destructive side effect of the steroids on days one and two.

By the time Saturday morning class came, I felt like I was kickboxing in the ocean. My body was heavy and felt like it floated in nothing, and that was the way it continued to feel through my chemo (especially when the neuropathy set in) but I kept going: every week, to every class I could.

Sure, I had to modify my workouts. Running and jumping rope became difficult, so instead, I rowed. The trainer said 10 burpees, my body said 5; some days it said zero, so I squatted instead. This wasn’t about ego; it was about winning. I listened to everything my body told me about what it could and couldn’t do, and I adjusted accordingly, because being at the gym made chemo more tolerable to me, mentally and physically.

I couldn’t have done it alone. Luckily, CKO Astoria has a great community. The owners, the trainers, the friends I’ve made; they’ve all stood by my side. Keeping me focused, coming to treatment with me, reminding me to slow down when I seemed to be pushing a little too hard.

You don’t fully understand what chemo does to a person unless you go through it. It’s like trying to function underwater, wearing weights over your entire body; legs dragging because you aren’t sure if you’re touching the ground. Still, I pushed through at the gym, knowing that if I could get through this class, I could get through the next treatment.

Staying on course with my workouts helped my nausea, and helped me keep up my appetite and water intake: things that are often the first to go during chemo. The doctors were amazed I kept going, and said it clearly was helping my body recover, but what they didn’t understand was the positive effects weren’t just physical. Having cancer can make you angry, but when I felt angry, I pictured a cancer cell on the bag and punched away. It helped.

Cancer is a tough opponent. But I’m tougher, I think.

Until two days before my surgery, I kept taking classes. I went from four classes a week to two, and then down to one, but I never stopped going: working out always helped. And it still helps.

As I recover from surgery and get ready to start radiation, my body, mind, and soul are exhausted, but my determination to keep going is still there. I’m slowly getting back to the gym, doing a little more each time I’m there. Kickboxing helped me to find myself before cancer, it helped prepare my body for the chemical attack it was forced to endure after cancer, and even if I’m left with scars, it will help me beat cancer in the end.

Cancer is a tough opponent. But I’m tougher, I think.

Creative Commons photo by Khusen Rustamov.

Essays

Out of Body

Getting breast cancer felt like being cheated on: even after it was over, as with many infidelities, it took me a while to learn to love my body again.

Until I was diagnosed with Stage IV inflammatory breast cancer, I didn’t think much about my body. I relied on it, of course, and I took care of it (exercise, green leafy vegetables, triple chocolate brownies). And it took care of me, until it didn’t. Most of us operate that way, I think. It’s almost an automatic response. Wake up, brush teeth, put one foot in front of the other, make breakfast. Until you can’t. Until one day your eyes open and your body doesn’t cooperate. Until you can barely sit up in bed, much less get to the toothbrush or the kitchen.

Laura at her son Roman’s second birthday party, taken during treatment.

And that was the biggest shock of all. When I heard the word cancer, I thought of chemo, bald heads, vomit, and exhaustion. I didn’t think I would lose my physical being—the part of me that loved to dance, play tennis, jump into a swimming pool, hold hands. I hugged with abandoned.

But as I started treatment, I retreated. It started with the PICC line, making sure no one got near my right arm. And when I got a chest port put in, any form of hug became incomprehensible. I didn’t want anyone to touch me. Everything hurt. A nod, a hand squeeze, a wink became my preferred way of communication. As the chemo drugs did their thing, my mouth and my eyes and even my balance were foreign to me. Sometimes even talking was just too exhausting. I became fearful of my body, of what it was doing to me and what people were doing to it.

It’s not just the treatment itself that seizes your physical body; it is the lack of movement from being in treatment. I woke up every day feeling like a stranger. Where was the strong body that had carried two babies and delivered them without a hitch? Where was the body that had run through the hills, walked thousands of miles in cities around the world, and that had breathed in and out without me even thinking about it?

I would sit on a park bench and just watch people move: walk a dog, throw a Frisbee, catch a ball. I ached for my old body.

Suddenly I could barely walk. The trek through the hospital halls to the parking lot felt like a marathon. Traveling for treatment I relied on wheelchairs in the airport to get me to the boarding gate. My soul resisted these changes. I yearned for the ability to move my body in ways that were joyous and positive. I would sit on a park bench and just watch people move: walk a dog, throw a Frisbee, catch a ball. I ached for my old body. I wanted to sink in a pool of water and float for hours. I wanted to sit in a swing with the kids and spin until we were dizzy. But instead I sat in my bed, stuck in a cycle of vertigo and nausea; I swam in visions of darkness and death. I watched the rain drip from the leaves outside, or the sun create shadows on the house next door, listened to a dog bark down the street. I was motionless. My physical being was gone, lost in a swirl of IV lines, medication bottles, needles.

So while I was trapped in stillness, I decided to watch the physicality of others. My mom bought two tickets to a Cirque du Soleil performance. I hobbled into the theater, my mom holding my arm, and we settled into our seats. The performance began and I sat still, staring at the performers. Their ease in movement, in flight, in motion, and bodies that did what they told them to do—it left me breathless. What must it feel like to wake up in a body that moves so easily. I wanted to touch the acrobats, to feel their muscles, to feel the blood running through their veins, to feel and absorb the life I saw in them. I wanted a body that reacted to touch, that craved sensation. My body had become a pincushion, a way in for medication, a thing to be healed. A body that other people talked about in front of as if I weren’t even there.

I cherish my body, this body that put up the best fight against cancer.

But seeing that performance sparked something in me. Something that made me move a little more, made me forgive my body a bit, too. I walked a little more each day, to the mailbox and beyond it. After the first surgery I made it up and down the wide hospital hallway on the second day, clutching my IV pole. Then more walks: past the marsh with my sister; down a city street with the kids to get ice cream; with my friends to see the ocean. Slowly, slowly, the energy returned. My being returned: I remember the first time I danced (a tango class with my husband for Valentine’s Day), and my first hike up a hill.

The contrast of the before and after is profound. I cherish my body, this body that put up the best fight against cancer. This body that came back to me, a little worse for wear but still here.  I move it every day in countless ways, and even dance in my sleep, sometimes. Finally, the physical me matches the mental me. I am whole again.

Creative Commons photo by Louish Pixel.

Essays

A Personal Dictionary of Breast Surgery

When Erin Ollila went into hospital to have a lump in her breast removed, the words she focused on weren't necessarily the same ones her doctors were using.

Lobular

When you think of the lump you found in your breast, you think of a peanut M&M. But the ultrasound techs describes it as lobular. You don’t know exactly what lobular means, but you assume oval, and that is when you decide the foreign body inside of you is the identical twin to the yellow M&M in the commercials. You wonder if the lump has white eyes and white legs, too.

But what if lobular doesn’t mean oval? What if the lump isn’t shaped like a peanut “M&M”, but instead it is disc-shaped, like a Milk Dud? You like the way Milk Duds feel as you chew them and the caramel slaps and sticks to your teeth and the chocolate soaks up your saliva. Or maybe it’s curved, like a lima bean. You never liked lima beans; or most beans for that matter. Or maybe lobular means perfectly round in all directions, like a jawbreaker, or a gumball.

Or maybe lobular means none of those things; maybe lobular just suggests circular. Maybe lobular is like a chewed up piece of gum flattened under your shoe, taking the shape of whatever presses against it.

Slurp

The lady checking you in at Registration slurps her coffee from a small hole on the plastic lid. “Mmmm,” she says, “That’s good, but it’s too hot.” You think she is talking to you until a woman appears behind her slurping a Starbucks iced coffee up her own straw. “That’s why I always get mine iced,” the new woman says.

All you can think as you watch them is Slurp, slurp, slurp. It’s as if they’re mocking you.

The lady helping you shakes her Pandora bracelet so that it falls to where her wrist meets her hand, just as you do when it creeps up your arm. When you’re nervous, you roll your beads between your fingers, remembering the times Ryan gave you the charms.

You finger your left wrist, but it doesn’t make the bracelet appear. If your bracelet were on right now, you’d probably have the Together Forever charm or maybe the Best Friends charm or maybe the hearts rolling back and forth between your thumb and your finger. But you aren’t wearing your bracelet.

Cubbyhole

An elderly volunteer with a perfect pale-brown and gray French twist walks you to Prep-Op and points to the end of the hall. “You’ll be in room 15,” she says, “and Susan, who’s standing right there, will be your nurse.”

Room 15 is not a room; it is more like a preschool cubbyhole, where the children stash their blankets for naptime. The “walls” are made from pulled curtains—although you did luck out since you’re the last cubbyhole in the row. You have one solid wall of your own in Room 15.

Susan, your nurse, makes a list of everything you’re wearing and the items you brought with you: Black pants, gray shirt, purple sweatshirt, pink socks, black sneakers, multicolored messenger bag, two credit cards, a driver’s license, a notebook, two books, a cell phone, hair elastic, two bobby pins, a pen.

You ask her if she needs to know the color of your bra and underwear since she marked the color of the rest of your clothing and she says, “Oh, no. No one ever complains about lost undergarments,” and then writes down “undergarments” on the form before passing it to you for a signature.  Why does a pen or bobby pins get jotted down, but not your white bra and green undies?

She tells you to pack up your clothes and everything else in the two hospital-issued, plastic bags on the bed. She leaves so you can change into your gown, not the type you wear at a ball, but the kind that opens in the back and just about everywhere else as well. She returns with a Pepcid for your stomach. You take the pill with the smallest sip of water, even though your stomach feels just fine, as you don’t want to get the urge to pee before surgery.

Uncooked Spaghetti

Susan gets the IV ready to put in your hand. Why can’t she put it in your veins in the crook of your arm? You prefer the IV in your left hand, so you can write in the meantime, but she’d rather not do that because your surgery is on your left side. You expected the tip of the IV to be the same size as a normal needle, but it’s not. It’s much bigger. You have good veins, or so medical professionals have told you, so she shouldn’t have to dig around in your hand for an entry spot. You don’t want to watch the IV go in, so you look away, only to look back right as it punctures your skin. That is too big, you think, it’s like she’s stuffing uncooked spaghetti into your veins.

“What’s in this IV,” you ask Susan as she begins taping the needle and cord onto your hand. She loops the cord between your thumb and forefinger and tapes it tighter. Now that it’s not wobbling around, it is more comfortable than you expected.

You expected the tip of the IV to be the same size as a normal needle, but it’s not. It’s much bigger.

“Oh, just some antibiotics for the surgery,” she says and you begin to see a few drops move through the IV line and then it clears and is filled with liquid. It’s been almost a minute since the spaghetti-sized needle entered your hand at the bottom of your thumb and you feel a slow cool rush through your arm as the antibiotics enter your body. You hope the antibiotics don’t give you a yeast infection and make a mental note to take some acidophilus and eat more yogurt.

Turns out, writing with an IV in your hand is not an easy feat. You decide that you’re going to try writing with your left hand—another hard feat. You write in your notebook “willing myself to write with my left hand,” as if the power of intention will suddenly turn you ambidextrous. Madden’s kindergarten handwriting is much better than what you just scratched along the paper. The sentence takes up about three lines on the page.

Grouch Sandwich

A man in blue scrubs walks into your room, doesn’t make any eye contact with you, and announces himself as Something Kearsavage. You assume, and hope, he said Doctor Kearsavage as he begins to talk to you—still looking at the floor—about what type of anesthesia he plans on giving you. He asks you when was the last time you ate something. “Around 8 or 9 last night,” you reply.

“What was it that you ate at 8 or 9p.m.,” he asks and sits in the chair on the side of your cot, staring with intent at the blank lines on your chart.

Does he really need to know what you ate last night? Your evening snack was quite a smorgasbord and every time you brought a new treat into the living room and noticed Ryan eyeing your selections, you proclaimed, “What? It might be the last snack I ever eat. I’ve got to have it all.”

There’s been a slight pause since he asked the question, so you finally answer: “Some Sour Patch Kids, a Rice Krispies treat, and a Popsicle.” For the first time since he’s entered your cubbyhole, he looks up at you blank-faced, blinks two times and then looks back at your chart to write those answers down.

Some Sour Patch Kids, a Rice Krispies treat, and a Popsicle… What? It might be the last snack I ever eat.

“What is THS Syndrome?” he asks you.

“I don’t know.”

“What do you mean you don’t know,” he asks, looks up at you for a second and then back down to the paper. “You have it. It’s written right here.”

You first urge is to take out your cell phone and Google THS Syndrome, but your cell phone is in your messenger bag, and your messenger bag is in the hospital plastic bag tucked underneath your cot. This information worries you. It is written in handwriting on a mostly printed chart, and you wonder if the results from the pre-admissions blood test indicated some new, horrible disease you may have.

“I have no clue what that is,” you reply, “but I’d really like someone to check on that before I go into surgery.” He nods, stands up and walks out of your cubbyhole. A few minutes later, her returns to tell you that it was TMJ Syndrome—temporomandibular joint disorder—which you do have, and you make a mental note to Google THS Syndrome when you get home.

You feel very uncomfortable with the fact that your anesthesiologist’s last name has the word savage in there. You aren’t sure you want a savage putting you in a dreamland. You’ve written in your scraggily, loose, right-handed handwriting, “he probably ate a Grouch Sandwich for breakfast.” You’re not sure what a Grouch Sandwich is, and why he’d eat it for breakfast and not lunch, but apparently that is what you’ve decided he devoured this morning.

Imaging

You’re worried about the “imaging” you need today. During all your phone calls yesterday, the receptionists and medical assistants and nurses you spoke to kept saying the word “mammogram.” You do not want a mammogram; your poor breast has suffered enough. Your nurse Susan wheels your cot around the hospital to Radiology, which seems quite strange seeing as you can walk there yourself, although everyone would see your backside. Susan parks your cart along the wall in Radiology and you hope she dropped you off at the right place because no one comes for you for two or three minutes.

A young ultrasound technician comes to get you and you realize it’s the same girl—is her name Brandy? —who was in the room during your biopsy. You’re worried less now; somehow this makes a difference. There is another female technician in the room, and they explain the procedure to you. You get an ultrasound. No mammogram! Unfortunately though, they plan on inserting a wire into your breast to mark the site of the lump for surgery. You didn’t plan on getting any new hardware today, but you prefer they take out the correct specimen, so wire it is.

You feel like an alien version of Madonna.

The doctor comes in who will be inserting the wire and he is relatively handsome. You don’t show your boob to that many people, and you feel strange having a slightly-handsome guy touching it—no less inserting a piece of metal into it—when you’re in a relationship, but apparently this is normal here because no one seems the least bit perturbed. Plus, he isn’t that handsome. It’s more just a mild handsome. Everyone else who’s touched your boob in the history of these lump appointments has either been an old male surgeon with minimal personality or women who seem the least bit phased over your mammary glands. Probably because they have their own boobs to manage.

After Minorly Handsome Doctor inserts a wire horizontally into your left breast he announces that he would like a plastic cup. Brandy, your new favorite ultrasound tech of all time, asks him to repeat himself, because she too seems confused about why he needs this. You look down. There is about three inches of wire just dangling out of your chest, bouncing a bit in the air. “You’ll see,” he says. She leaves the room and reappears a few minutes later with a plastic cup. He takes it, places it over the wire protruding from your breast and asks for tape. Both girls are looking at him blankly, and then the tech whose name you don’t remember—although it may have been Amanda—passes him the tape. He pulls out long strips and tapes the cup to your chest. “Tada!” he says. “Just in case you move your arm and knock it out of place.”

You feel like an alien version of Madonna.

Alone

You miss Ryan; you feel uncomfortable in the silence of your cubbyhole where you can watch all these people. A woman walks by with her husband, or maybe it’s her brother. She is holding the back of his hospital gown closed as he walks in front of her. She looks into your cubbyhole, notices you are alone, and smiles with that sympathetic, pity kind of smile. You did this to yourself. Ryan would have been here waiting with you if you weren’t so adamant he stay at work. “It’s just a small procedure,” you said to him. “There’s no need to take the whole day off when you’re probably going to only be allowed in the pre-op area for a half hour or so.” You always need to be the strong one; you always end up alone.

Contestant

It must be all the Jeopardy you watched with your grandmother as a child. When someone asks a question, you pull the relevant words out and feel the urge to answer as quickly as possible. It’s as if you’re listening closely, with a buzzer in your hand waiting to respond with your answer—just not in the form of a question.

Your doctor walks into your cubbyhole in Pre-Op with your chart in his hand. “How are ya doing,” he says with about as much enthusiasm as you’ve ever seen him muster. He must be excited to cut. You’ve heard it’s like a drug—cutting that is—that some surgeons get high off the rush.

You’ve heard it’s like a drug—cutting that is—that some surgeons get high off the rush.

“So, you still in a lot of pain?” he asks, and your contestant-like brain kicks into gear as you nod your head and answer, “Yep,” at the exact same time that he says, “back there,” and points toward his rear end.

Hold up.

Back Where?

Did you just acknowledge that your ass was in pain? Does this man even know what surgery he’s doing?

You don’t say anything, partially because you just don’t know what to say at a time like this, and partially because you don’t want to embarrass your doctor. If he mentions your ass again, you’ll remind him your surgery is on your breasts, not your derriere.

Notes to Self

You’ve watched every season of Grey’s Anatomy except the current one. You know all the things that happen in hospitals. Your anesthesiologist could be drunk. A gunman could go on a killing spree while you’re in dreamland. Doctors could perform the wrong surgery on the wrong patient. You watch a lot of movies. You read the news. People go under anesthesia all the time and wake up with a case of amnesia. With your luck, this is bound to be you in a few hours. You’ve learned that writing with your left hand is no longer an option, but you can maneuver the pen around the page if you grip it very loosely with your right hand. You write in your notebook:

“If you (and you write “Erin” on top of the word you, just in case you don’t remember your own name) wake up from surgery and don’t remember anything like in the movies—I just want you to know that you love Ryan with all your heart and Madden and your parents, brothers, and best friends. Just in case. ☺” You neglect to mention your sisters-in-law and nieces and nephew. And even more importantly, your own dog, Fenway.

V-Drug

When it is time, a woman whose shoes and hair is covered with blue surgery caps comes into your cubbyhole. She has kind eyes and while pulling your IV line out from behind your back, informs you that she is the nurse anesthesiologist and that she was going to give you a sedative and bring you into surgery. She says the name of the drug, something that started with a V and was similar to Valium, but you forgot about as quickly as she told you. The only think you remember her telling you was that some patients say they feel a mild burning sensation once the V-Drug gets into their system. Then she begins to wheel you away.

High

Here are the thoughts you remember thinking from the time you leave your cubbyhole until you fully go under from the anesthesia:

Where is the burning feeling? Didn’t she say I’d feel a burning sensation?

These people must be so strong to wheel around the patients all on their own.

I feel the same as I did ten seconds ago.

This is the operating room?

Where is everybody?

Ohhh, I feel a warm sensation. It’s definitely not burning, but I do feel all warm in my veins.

What are they putting on my lower legs? Is that massaging my legs? Is someone massaging my legs?

I kindaaaaaa get the whole addiction thing now. This doesn’t feel so bad.

You feel a big bit high, and a tiny bit nervous. The nervousness is catching up real quickly with the high, and you realize that in a few moments you will be in a dreamland. The same dreamland you’re afraid you won’t wake up from, and that is what scares you. Look around, you think, feeling a sudden urge to take everything in. The items in this room might be the last things you ever see. Everything in this room is disappointing. Sterile. You’re on your back, buzzed off the anesthesia high, staring at the ceiling fan—or was it just the lights on the ceiling—when you notice the initials on what you appear to think is a fan: ALM.

ALM. You twist those words around in your mouth even though you don’t open it to speak. ALM feels familiar. You floating deeper in your buzz and the fan—or light—starts to get blurred and fuzzy. Aaaaaa Llllllll Mmmmmm, you think. ALM stands for Amy Louise Melo, your best friend since kindergarten.

This is how you know you’ll be okay.


Top photo by Mike Licht, used under Creative Commons license.

The Good Fight

The Wise Women Of Tyler, Texas

In a small East Texas town, a small group called Pin-A-Sister is saving lives by going into local churches and asking women to promise to get a mammogram.

Some Sundays, particularly during Breast Cancer Awareness Month, women in black East Texas churches gather following services to be proactive against a disease that is killing them at an alarming rate. The elder women— who often don elaborate church hats, complete with rhinestones and huge bows—engage with their younger peers about breast cancer and self-care.

Usually draped in pink attire, East Texas Pin-A-Sister members show up at churches in the Tyler, Texas area to spark a movement. The congregation hears about a Breast Cancer survivor’s journey and the speaker urges them to pledge to get a mammogram. It’s usually brief and to the point, but often makes a lasting impact. Women then ceremoniously pin each other — affixing a tiny, shiny accessory that serves as a reminder to follow up on the pledge.

To date, more than 7,500 women have been pinned. It’s a program that saves lives.

A breast cancer pinning ceremony at a church in Tyler, Texas.

Pin-A-Sister is a tight-knit group in Tyler that promotes breast health ands the need for regular mammograms. Their committee is relatively small—about 15 members meet monthly on average— but their impact in the community is greater than they’d imagined when the group was established about seven years ago.

The outreach is vital, as the death rate from breast cancer is disproportionately higher in black women. According to the American Cancer Society, breast cancer death rates between 2008 and 2012 were “42 percent higher in black women compared to white women, despite similar incidence rates.”

Schwanda Moaning learned about Pin-A-Sister at her church. Inspired by a pinning ceremony, she vowed to get a mammogram, then kept up with her health, doing regular breast checks. Her promise saved her life: She was diagnosed at stage 3 in November 2011 when a sonogram illuminated two tumors. Surgery and chemotherapy followed in 2012.

Schwanda Moaning learned about Pin-A-Sister at her church. Inspired by a pinning ceremony, she vowed to get a mammogram…. her promise saved her life.

“I never thought it would happen to me but I did and I had to deal with it,” the 44-year-old says. “I wasn’t having any issues. I wasn’t hurting or anything. It just popped up all of a sudden.”

A doting mother who is now without cancer, Moaning eventually starting volunteering with Pin-A-Sister events. Motherhood, she says, is what made her encourage other moms, who she says often cite busyness or fear as reasons why they aren’t proactive in their health.

“They forget about their own health,” Moaning says. “I’ll tell them in a minute, ‘if you don’t take of yourself who is going to take care of (your children)?'”

She’d gone to support groups at her doctor’s office, but Pin-A-Sister added another layer of reinforcement.

“I just wanted to be active and tell ladies about the organization and help other women get their mammograms,” she says. “Everybody works together. We try to be there for one another.”

Addressing A Need

A few years ago, a community needs assessment conducted by a Tyler, Texas affiliate of Susan G. Komen for the Cure showed that women living in two area codes with a higher population of African American women had a higher incidence of breast cancer and in late stages. The women in this area also had a lower prevalence of breast cancer screenings.

Upon studying the data, Regina Davis, director of East Texas Medical Center’s Breast Care Center, decided to offer a campaign to improve breast health awareness among the black women in the local community.

In 2010, ETMC Tyler launched Pin-A-Sister. It was modeled after a program in Chicago by the same name, which encouraged both African American and Latina women to get mammograms on Mother’s Day.

But Davis came up with a different strategy for year-round outreach that was sure to be successful in the deeply religious part of the state: They’d engage the church.

Photo: Callynth Photography

In its first year, Pin-A-Sister volunteers pinned 2,000 women, surpassing the goal of 600.  Of the 80 African-American churches in Smith County, almost all —95 percent—have hosted pinning ceremonies since the campaign’s inception. One hundred women have been trained as “wise women”—community-based patient navigators— to assist women with scheduling mammograms and obtaining financial assistance.

But the momentum for the now popular breast cancer campaign took a little time to rev up.

The momentum for the now popular breast cancer campaign took a little time to rev up.

At the first church visit, Davis sensed there was some reluctance to talk openly about breast cancer.

“It wasn’t the fact that you didn’t have the passion,” she says. “It was just about having that conversation in a church setting.” Eventually, though, the reticence to talk about breast health went away.

“I went back (to the same church) last year and they had the pink clothes, speakers and survivors,” she recounted. “The level of enthusiasm was very, very noticeable. You didn’t get that kind of conversation back in 2010.”

The Pin-A-Sister logo.

Measuring the success of the program beyond what is seen at ETMC Tyler has been a challenge, but they have been able to show through its cancer data registry a decrease in black women who present with late stage breast cancer at the hospital. According to their records, seven out of 19 black women in Smith County, Texas were diagnosed with late stage breast cancer in 2009. Last year, that figure was down to one out of nine black women.

That’s a small sample size, to be sure, but no one can tell Davoria Ates, a Pin-A-Sister committee member, that the organization doesn’t make an impact. She would know: in 2007, she was diagnosed with early stage breast cancer.

She didn’t handle the diagnosis well.

“I was terrified. I lost it,” Ates recalls. “It changed my whole life. I looked at life differently. It’s just a different feeling.”

Years later, still with no signs of cancer, she rolled up her sleeves to help those who’d been in her shoes.

“I thought it was a good idea to get women together and go out and testify and help other women to make sure they got their mammograms,” Ates says. “It’s worth it. When I get through with my testimony at the church, I beg. I say ‘please, it’s worth it to catch it (early).'”

Adamant and Wise

Jessie Bell, 61 is among the “wise women” with Pin-A-Sister and she’s been there since the beginning.

The most critical information she shares is about the ways women who were under-or uninsured could get screenings and/or treatment through various programs. Worries about the cost is usually the reason they’re afraid to learn their status, she says.

“A lot of times, it’s hard for us to reach out to women because they’ll say, ‘If I got it I don’t want to know. I ran into that a lot,” Bell says.

And then there is the constant myth-busting. She said some older women feel they’re unlikely to be diagnosed if they’re advanced in age.

“They fail to realize women are getting breast cancer even in their 80s or 90s,” Bell says. “As long as she has her breasts, she can get breast cancer.”

Starting a movement, one woman at a time.

“If we keep living, every woman will be affected by cancer.”

Regardless of feedback, Bell doesn’t hold back. She makes constant contact with those who have pledged. If she knows an appointment is coming up, she’ll be calling.

“I shoot from the hip and tell them what it is,” Bell says. “I’m so adamant about it.”

It’s because she’s experienced it first-hand. After a diagnosis in 2007, she underwent five surgeries, 30 rounds of radiation, plus five years of taking the drug Tamoxifen.

“If we keep living, every woman will be affected by cancer, either themselves or a family member,” Bell says.

That’s why groups like Pin-A-Sister are so crucial, especially in East Texas, where residents have some of the worst health outcomes in the state.

“It is about identifying cancer but I also want women to become involved in taking care of themselves,” Davis says. “You ought to know what you need to do and do it. There is a lot of work to be done. There is a pressing need out there.”