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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.”

Essays

From Colorado With Love

After chemo, Rebecca Thomas thought she had met the perfect man. But cancer had profoundly changed what she needed from love.

Diagnosis plucked me from dating life in one efficient swoop. One moment, I had been a single, fit, forty-something woman; the next, bald and undateable.

But after a grueling slog of surgeries, chemo, and radiation, I was ready to rejoin the desirable. Each day I assessed myself in the mirror until I transitioned from cancer patient to chic, short-haired woman. The moment my hair was a believable pixie cut, I put myself on Tinder.

I liked the simplicity of Tinder. Yes, no. No, no, no. I even let friends swipe for me at a party. Everyone erupted in cheers when we got a match.

His profile showed off a broad smile and multiple action shots. A yoga pose on a mountain top provided the perfect excuse to invite him to join my sunset practice. He was in Richmond on business, scheduled to return to Colorado within a week.

One evening turned into five. We walked all over the city and traded stories. On the top of my mind was the experience of being in treatment. He asked what chemotherapy was like. I wasn’t sure how to answer so I asked a cancer friend how she would describe it. “It feels like you are crumpling in on yourself.”

That sounded right. It was a relief to be able to speak openly about the disease that was still a shock to me.

It was a relief to be able to speak openly about the disease that was still a shock to me.

The day I signed my chemotherapy waiver, I was crying so hard the nurse ushered me into a private room until I calmed down. The list of potential side effects was four pages long, front and back. A third of that list came to pass. My private horror show. Even my family squirmed at the details.

I had opted for a lumpectomy and radiation instead of a mastectomy, so they were still intact. Even so, I was worried about presenting this post-treatment body. Before we were intimate, I told him the body I had been so proud of now had multiple scars from surgeries. The scar from my port was raised and angry, almost cartoonish with jagged edges. It still hurt to the touch.

He stopped as we walked to tell me it wouldn’t bother him if I had had the whole breast removed.

“Without reconstruction?” I clarified.

Yes.

I was stunned. It never occurred to me a man might want me without my breasts.

Time together felt graceful. Our quirks didn’t irritate or put each other off. One evening we walked to three different restaurants, and then came back to the original one in an effort to make sure our meal conformed to his dietary ethics. He apologized, but I didn’t mind. It amused me that for once I wasn’t the fussy one.

Much to our mutual surprise, we slept well together: the pinnacle of middle aged compatibility. Up to this point, I was practically evangelical about sleeping apart from my partners. Snoring, different schedules and the firm belief that cuddling and sleeping were separate activities had me singing the praises of everyone returning to their own beds. I was secretly relieved to be wrong.

It never occurred to me a man might want me without my breasts.

During the first few months of treatment, I ached to have a partner who could rub my back at night. To fall asleep,  I would place a pillow behind me and close my eyes. The available support didn’t include tucking me in at night or I didn’t know how to ask. Facing my empty bed at the end of each day did nothing to soothe my anguish. My Colorado friend happily held me, rubbed my back and reached for me in the middle of the night.

After one visit, I texted: “The bed was lonely without my sleeping companion.”

He wrote back, “I love that job.”

A month later he invited me to join him for his annual kite surfing trip in the Outer Banks, NC. I pretended to think about it, then jumped at the chance. We drove in the direction of an oncoming hurricane and found a deserted resort. The hotel looked like it was one season away from being swallowed by the ocean, our balcony listing into the surf. The room was moderately appointed with an uncomfortable bed and a carpet filled with sand. I felt lucky to be there with him.

During the day, we roamed the empty beach, soaking up brief bits of sunshine. In the evening, we silently held each other while watching the roiling ocean, sometimes pausing to look at the stars. One night, he stood naked in the doorway, facing the wind and lit by the moon. I watched from the bed until he reached for me to join him. For the first time in my adult life, I heard music when I looked at a man. I scolded myself for such foolishness, but happily took his hand.

For the first time in my adult life, I heard music when I looked at a man.

On the third day,  he set out on a tiny surfboard and a giant kite. At age fifty-two, he handled the sport like a natural, delighting me with jumps and flips. I felt like a highschool girl watching her boyfriend on the sidelines. It seemed particularly delicious that I got this treat for the first time in my forties.

That night, we sat quietly parked in a flooded lot, watching the rain against the glow of a lighthouse. The sounds of the water and frogs amplified our silent intimacy.

At his suggestion, we capped off our blissful five days by eking out a few more minutes sitting side by side in a restaurant booth. We held hands and chatted. I felt peaceful, even with our imminent parting.

With a brief hug and a kiss, he returned home to Colorado, I to Virginia, and radio silence. Our connection hung in the air without acknowledgement or nurture. The message was clear: I wasn’t invited into his life.

The distance and his natural reserve made it impossible for me to understand what this romance was. I intended to give the relationship the space to grow. Instead, there were intense visits followed by no accountability.

The ambiguity of our arrangement made my heart ache. I wanted to be the kind of woman who barely noticed his withdrawal because my life was filled to the brim. Instead, I writhed around each time contact began trailing off. Despite wanting to be patient with him, I was unable to get comfortable with the periods of silence.

The message was clear: I wasn’t invited into his life.

Out of the blue, he texted he could make time to stay a few days. I agreed to a fifth visit, setting my concerns aside. In person our connection deepened, slipping back into the ease from our trip. We made the most of two nights and one long Sunday. I reveled in the simple joy of seeing his face across the pillow or holding hands as we drifted off to sleep. We strolled, ate pizza, explored a video store marveling that such a thing still existed. The activity didn’t matter, time together was the real pleasure.

Monday morning, he departed with an affectionate embrace. There were dribs and drabs of communication, and then back to silence.

When we were together, I liked to comment on his adventures by telling him he was his own man. I meant it in other ways as well. I knew that someone who loved him had to either accept setting out on his course, or stay put until he returned. I had a lifetime of practice at accepting less on the grounds that something was better than nothing. Still, it took every ounce of my personal conviction to part ways. When I finally heard from him again, I explained why I couldn’t keep going and he ever so gently set me down.

Rebecca Thomas.

Recurrence looms large at the conclusion of treatment. The patient is tossed back into their lives, everyone crossing their fingers. Every ache and pain results in a searing fear. At the onset of treatment, a few of my doctors gave me their personal cell phone numbers. The one and only time I called was a Sunday a few short months after the last of my treatments. I had a persistent pain in my side and was certain it meant something more ominous. I sat paralyzed on my couch for hours until the fear subsided. It turned out to be a muscle strain.

Before diagnosis, I held the illusion of life stretching before me. It was just a matter of time before love came my way. The reality was more sobering. As we parted, he wrote: “You are an amazing woman with a beautiful journey ahead”. A breezy sentiment from someone who still believed there was plenty of time for life to unfold.

Diagnosis brings hardship, but also clarity. After getting final confirmation that this lump was in fact, cancer, I went home and laid down on my floor. There was shock, of course. Other thoughts bubbled up to the surface. I wanted a partner for my life, a love of my own. Maybe cancer was about to remove that possibility for me? I felt the loss acutely.

No matter how I felt about this man, cancer had made it impossible to accept a casual arrangement. I couldn’t make him love me, or want our thing to proceed.  Now that I am through treatment I haven’t forgotten how it felt to have all else but my own truth stripped away. It isn’t enough to have a worthy candidate, I need an open heart too.

Essays

Proof Of Life

I never thought I was photogenic. Then I started chemo, and learned to appreciate how precious photos of me and my family really were.

I never liked having my picture taken.

As a kid I smiled for the camera, but as I hit my teens I secretly hoped that when the photos got back from the film lab they would show a different me, one with wider lips and a smaller nose. I never felt photogenic, unlike my older sister whose face seemed to light up the camera. I studied image after image: the length of my chin, the length of my brows, the color of my hair (an unacceptable mousey brown, I thought).

This continued through college (bad hair), my twenties (adult acne), and even to my wedding day. What I thought I looked like when I glanced in the mirror never reconciled with the image in the photo. (This was well before digital photography was the norm; there were plenty of photos to look through, with free double-prints—and no delete button.)

Laura Holmes Haddad and her son Roman, the day before her diagnosis.

When I got pregnant I got more comfortable behind the camera, figuring I would want memories of my expanding belly, my firstborn. Capturing a baby belly seemed worth it. And then I set out photographing my daughter, Penelope; with a new iPhone and a smiling baby girl there was nothing stopping me. I had hundreds of images. Children literally change overnight, and the impulse to record the moment is automatic. And then I got pregnant again, and when our son Roman was born there were endless moments to capture: smiles, tears, laughter.But while I wanted photos of the kids, I didn’t particularly want to be in them. I remember so clearly when I hired a photographer to take a few photos of me and the kids when Roman was 9 months old. In most of them, I’m turning my head, or nuzzling Roman’s head, or hiding behind my two children.

But two months after those photos were taken I was diagnosed with Stage IV inflammatory breast cancer. Penelope was 4½ years old, Roman was 14 months, and I had an 11-centimeter growth in my left breast and was given about 2 years to live if the treatment didn’t work.

Laura plays with her two children in the snow, after chemo.

Something switched inside me. Perhaps it was the giant clock I felt ticking above my head, perhaps it was a maternal instinct that kicked into high gear the moment I got the news. All I know is that I suddenly wanted photos. Lots and lots of photos. Every day, at least twice a day, and sometimes more. Photos of me, the kids, our family, our outings. I wanted photos of my cancer “journey” and I wanted them now.

Something switched inside me. Perhaps it was the giant clock I felt ticking above my head…All I know is that I suddenly wanted photos.

I have a photo of me and the family picking out a Christmas tree the day before I started chemo; a photo of me hamming it up in a horse saddle at a restaurant in Houston, on a break from a doctor’s visit at MD Anderson. I have a photo of my head shaving, stunned and sad; I have a photo of me singing karaoke on Christmas Eve, in a red dress and a headscarf, just off my first round of chemo. I have photos of my daughter’s 5th birthday party, which I practically crawled to; I was determined to make it happen, cancer or not. I wince when I see those images, see the suffering in my eyes. And I cry when I see the joy on Penelope’s face as she is blowing out the candles on her cake. It was worth every excruciating moment.

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

Taking photos felt—and still feels–like a way to stop time. I needed proof I’m still here. I’m on this Earth, still. Seeing the images, holding a print in my hands, feels like the most physical way to say I am living this life.

Laura and her kids, May 2013.

When I got derailed in my treatment—the chemo wasn’t working, I was waiting to get into a clinical drug trial–my sister’s friend, a photographer, offered to photograph me, my sister, and the kids. We met in a local park on a cold morning in February, the kids in sweaters and me in my favorite blue headscarf. My daughter and I are wearing pink cowboy boots. The photographer took photo after photo of me and the kids and me and my sister. They were and are spectacular. As I write this I can hardly stop crying, thinking of that day. Those photos froze my kids in a moment I barely remember. I was often in bed, or traveling by plane for treatment, hardly ever with them and struggling through overwhelming pain. My daughter looks blissful, and then serious, and then wistful. My son sits with my sister, who essentially helped raise him for almost two years while I had treatment. My husband had to go to work every day to keep the health insurance and the paycheck coming, so my sister folded my kids in with her three daughters.

And then there is the photo of me and my sister, laughing—laughing despite the darkness. We were laughing, even though we had no idea what that month would bring, no idea whether I would gain access to the clinical trial. We didn’t know that a week later I would start traveling from San Francisco to Los Angeles every week for six months to receive chemo. That surgery and 40 days of radiation would eventually follow, with years of chemo still to come. That the heavy praying would start then.

Taking photos felt—and still feels–like a way to stop time.

I’ve been off chemo for two years and I appear in almost every photo. There are no bad hair days anymore, really no bad days at all. Some photos are great, some terrible, some show the bags under my eyes, my “bad side.” I want to capture life. Some photos have an arm through my face, the result of my son’s temper tantrum at that moment; some have my daughter’s scowl if I’ve forced her to stand still; others show my husband’s exasperated “another photo?” look. But they are moments that happened, and that is good enough for me. And the photos show me, and everyone I love, that I am living life the best that I can; that I’m not squandering this gift I have been given.

Proof of life.

And although I am NED (no evidence of disease) and remain optimistic about a healthy future, there is always a tiny cancer voice in the back of my head that keeps me vigilant. The voice that says, “just in case something bad happens, leave a memory. Leave something memorable.” My daughter now has her own camera and I love flipping through the images, seeing the world from her eyes. My son takes photos with the iPad, and even the feet and half a tree images make me laugh.

I create photo books for the kids almost every month. It’s this insatiable urge to leave them with memories, to leave them with photographs that tell them, “I loved every minute as much as I could. I loved you every second. We did this. I was here with you.”

Health & Fitness

Don’t Ever Try To Face This Thing Alone

When Lillian Gentry was diagnosed with breast cancer, her faith shattered, and she fell into a deep despair—until a new friendship pulled her back from the brink.

First alerted by shooting pains in a nipple, Lillian Gentry, who lives in Houston, was diagnosed with breast cancer two years ago. From that moment after, she felt like she was on a non-stop emotional roller coaster.

She was frozen by the news of cancer. Over eight months, she went through 17 rounds of chemotherapy, a double mastectomy and radiation treatments.

Gentry is a Christian, but admits she cried a lot as she worried how the diagnosis would affect her two 12-year-old sons.

“For the first time I questioned (God),” she says. “Why would you allow this to happen to my sons?”

But then she met La Shunda Bowie-Minix, and a new friendship–found in cancer–pulled her back from the brink.

La Shunda and her son, Denim.

Bowie-Minix, 35, doesn’t look like she’s suffered much in her life. She doesn’t sound like it, either. She’s energetic and happy; vibrant, even. You feel it in her Southern greeting: “How you doin’? I’m blessed.” And you see the liveliness in the gold-tinged curls atop her head–a perfect contrast to her glowing, cocoa-brown skin.

That’s now. But in 2015, she’d lost all of those beautiful curls, passing in and out of a cancer ward for most of the year. To hear Bowie-Minix tell it, it was a test of faith, but she never wavered. In fact, amidst the taxing routine of cancer treatments and doctors’ appointments, she was in celebration mode.

She was getting ready to give birth to her first son. That alone was enough to fuel her will to survive. She learned of the cancer diagnosis–non-Hodgkin’s lymphoma–in her fourth month of pregnancy.

I embraced my cancer diagnosis. It made me a better person.

It was already a difficult time, thanks to swelling, high blood pressure, and unbearable morning sickness. Adding a potent cocktail of drugs to attack the tumor growing in her chest was risky. Doctors feared the worst, for both her and her baby.

The baby, which Bowie-Minix named Denim, is fine. He’s now a healthy and talkative 2-year-old with sweet doe eyes. “It didn’t touch him. It didn’t bother him,” Bowie-Minix says about the chemotherapy. “I look at it as a blessing, how powerful God is.”

But Bowie-Minix didn’t go unscathed. She’s now coping with a long list of health problems, including congestive heart failure. As a side-effect of the toxic medicines, she slowly lost heart function over the course of her treatments. Because of this, doctors needed to implant a defibrillator to make sure her heart can be shocked back into rhythm in the event it stops.

But Bowie-Minix stays focused on the positive. “We’re not going to have a pity party,” she says. “I embraced my cancer diagnosis. It made me a better person. It’s nothing to be ashamed of or to ask sympathy for.”

Gentry reached out to Bowie-Minix—who lives more than 200 miles away in Tyler, Texas—on Facebook after reading her story on the University of Texas MD Anderson Cancer Center’s website.

“You go through the stage that ‘I’m going to die,’ then acceptance, then you look for someone who can relate,” Gentry says.

You go through the stage that ‘I’m going to die’… then you look for someone who can relate

Her friendship with Bowie-Minix gave the strength to go on.

“When I met La Shunda, she definitely inspired me to keep fighting and know that this isn’t the end. She had gone through a whole lot more than I had experienced. To see her living life so vibrant and so positive, that inspired me.”

Bowie-Minix got something out of it, too. It was through her interactions with Gentry that she realized what she wanted to do, besides be a mom: be a beacon of light for those struggling with the effects of cancer.

“I want to show people that cancer is not a death sentence,” she says.

Since finding meaning in their cancer friendship, both Bowie-Minix and Gentry have connected with other friends, family members and strangers who have reached out to them for guidance.

For Gentry, this has been an opportunity to promote the importance of sharing family medical history and preventive care, especially among young women.

“Sometimes you don’t have to say anything,” Gentry says. “Sometimes your life is an inspiration for people to have hope.”

“Paying it forward” in friendship matters when you’re a cancer survivor. Ask La Shunda and Lillian.

Like Bowie-Minix, Gentry is not shying away from the ugliness of cancer–blackened nails, hair loss, and marred skin.

“You lose everything, but to see someone go through this and continue to smile, that was a enough for me,” she says. “It really didn’t matter what (La Shunda) said. Her lifestyle spoke for her.”

But there is beauty in it, too. She wants to do for others what Bowie-Minix did for her.

“You can go through the journey and not lose who you are,” Gentry says. “Cancer does take a lot from a person but you can still be the beautiful person that you are and you can thrive. Don’t stop at just surviving, but thrive. Leave a legacy.”

For Bowie-Minix, the road to wellness is as simple as adapting to detours because nothing in life is predictable.

“What I’ve learned from this journey is that you don’t have to have a diagnosis for your life to change in a split second, and then bam, something goes wrong. You can’t ever say you’re prepared.”

Don’t ever try to face this thing alone.

Today, Bowie-Minix is working on a book, which details her cancer journey while pregnant. She hopes it’ll be available as a resource at cancer centers to help patients as they wait during treatments. It’s also to give hope to those who consider rejecting treatment.

They are both underscoring the importance of recognizing the connection between mind, body and soul in addressing anything in life.  They believe support and resources are critical pieces to that.

“Don’t ever try to face this thing alone,” Gentry says. “I’m still a very independent woman, but I learned through this journey, some things you just can’t go through alone.”

The Good Fight

Fighting Cancer In A Country Without A Word For It

Philippa Kibugu-Decuir aims to prevent breast cancer deaths in East Africa using a survivor’s most powerful weapon: knowledge.

Teaching is, and always has been, Philippa Kibugu-Decuir’s calling: from the time she was a little girl giving lessons to her playmates, to her combined 28 years teaching English and Special Education in Houston, TX.

It’s fitting, then, that the motto that steers the efforts of the nonprofit organization she founded, Breast Cancer Initiative East Africa (BCIEA), is “Knowledge Is Power.”

“Knowledge liberates people from ignorance, poverty, and disease,” Kibugu-Decuir says. “Learning is a privilege in Africa, the only way out of poverty. Teachers are highly respected.”

Operating in both the U.S. and Rwanda, BCIEA’s mission is to improve and save the lives of low-income women in East Africa by providing access to information about breast cancer prevention, detection, diagnosis, and treatment. By conducting awareness campaigns and training local breast cancer survivors and volunteers to educate their neighbors, BCIEA combats misinformation and increases breast cancer awareness one person at a time, one village at a time.

Philippa Kigubu-Decuir, founder of the Breast Cancer Initiative East Africa,

Kibugu-Decuir has strong personal ties to central East Africa. Born in Rwanda, she was raised and educated in Uganda. Her two children were born in Kenya. Much of her extended family lives in Tanzania. Such close-knit ties to such a vast region have influenced Kibugu-Decuir’s approach.

“Initially I wanted to start very small,” she says, “but things changed when I realized that the magnitude of my message could not be limited. I could not deny any of them a chance to hear life-saving messages about reducing their risk of breast cancer.”

Kibugu-Decuir launched BCIEA in 2008 using Rwanda as an incubator to develop her strategy and programs, with plans to replicate her successes in neighboring countries.

Even with a focus on a single country, however, disseminating accurate breast cancer information in the region has proven a steep uphill battle.

A Foe Without A Name

Since the 1980s, breast cancer awareness as a health and social advocacy movement has become such an ingrained part of the collective American mindset that a basic understanding of and about breast cancer is almost assumed as a given. The absence of breast cancer knowledge that preceded this decades’ old push in the U.S., however, still exists in much of East African culture.

Thus, when we talk about the need for breast cancer awareness in East Africa, Kibugu-Decuir says, we’re talking about a medical and social issue steeped in “ignorance, misinformation, myths, silence, and stigma.”

We’re talking about a medical and social issue steeped in ignorance, misinformation, myths, silence, and stigma.

In Rwanda, for example which she says is indicative of the larger East African region breast cancer was initially viewed as a disease exclusive to rich white people. Lumps and breast anomalies in black women were rather viewed as a curse, deserving of fear, shame, guilt, and ostracization.

Women who’ve had breasts removed through mastectomy (the standard treatment in Rwanda) may be considered insufficient, incomplete, or “damaged goods.” Kibugu-Decuir points to a regional curse indicative of the social and cultural stigma associated with breast cancer: “May you have your mother’s breasts cut off.”

The problem is often compounded by a belief that talking about a subject can bring it upon oneself. Rwandan women have told Kibugu-Decuir, “You can’t talk about [breast cancer]. If you talk about it, it’s going to be contagious. People will shun you.”

In fact, Kibugu-Decuir notes, Rwanda’s national language, Kinyarwanda, has no word for cancer.

These issues of avoidance and misinformation, coupled with widespread poverty, illiteracy, and severely limited or no access to screening and cancer care services like mammography, radiation, and chemotherapy, contribute to incorrect and delayed diagnoses. Many women in Rwanda and East Africa don’t know they have breast cancer until the disease has reached an advanced stage.

Rwanda’s national language, Kinyarwanda, has no word for cancer.

With early detection and treatment, however, many of these deaths might be prevented. “We are working hard to convince Rwandans and East Africans that breast cancer is not a death sentence, does not discriminate, knows no boundaries, and that men, too, can have it,” Kibugu-Decuir says.

So how do you get people talking about an issue just the mention of which may be considered fatal?

The first step, she says, is to earn people’s trust. In this, Kibugu-Decuir has a special advantage. Not only does she speak the language and have ties to the region: she also has strong personal ties to the breast cancer experience herself.

Kibugu-Decuir’s history with breast cancer, however, doesn’t actually begin with her own diagnosis. It begins with that of her eldest sister, Mabel.

In East Africa, breast cancer is often viewed as either a curse, or an affliction that only effects white women. Neither is true.

A Difference in Diagnoses

Mabel was rarely sick, Kibugu-Decuir says, and, like her contemporaries, knew little about breast cancer. Unfortunately neither did her doctors.

When Mabel fell ill in the mid-1980s, there were no cancer care services or support groups in the Democratic Republic of the Congo’s capital city of Lubumbashi where she lived. There were no early detection screenings. There were, in fact, no oncologists. To the medical establishment at the time, Mabel’s illness was a mystery.

By the time she was airlifted to London for surgery, the cancer had already spread to her liver. Mabel died of metastatic breast cancer in 1986.

“It’s been 31 years since Mabel died, yet it’s like yesterday,” Kibugu-Decuir says. “Her death left us with an incredible, gnawing pain. It would end up being the catalyst for starting BCIEA.”

Philippa knitting.

Mabel’s experience is typical of many East African patients still. By comparison, Kibugu-Decuir says, her own diagnosis and treatment in the U.S. eight years later “was a breeze.”

“Unlike my sister, by the time I got my diagnosis in 1994, I had excellent health insurance,” she says. “I was an informed patient. My cancer was detected early. I had an excellent team of doctors and a strong support system that included my family, church, and members of a breast cancer support group.”

Kibugu-Decuir underwent a double mastectomy with reconstruction and chemotherapy. For all the resulting side effects including pain, hair loss, nausea, and despair she recognized the advantages of her situation. Unlike her sister, Kibugu-Decuir had options. She had hope.

The dichotomy between her experience and her sister’s left Kibugu-Decuir with two nagging questions. Would Mabel still be alive if she had lived in the U.S.? Should where someone lives determine if they live or die?

Spreading the Word

Disturbed by these questions, Kibugu-Decuir determined to do something to disentangle cancer survival from the sheer luck of geography. To raise money for a fact-finding mission to Rwanda in 2007, she sold off some of her clothes at a silent auction held in her living room.

Despite a population of more than 10 million at the time, Rwanda had zero oncologists, or any form of cancer screening, treatment, or palliative care, Kibugu-Decuir says. Of 10 doctors she surveyed on her fact-finding trip, only two had ever even heard of breast cancer. She also met a group of 27 women whose “mind-boggling” cancer experiences encapsulated the need for action.

Each of the women had had at least one breast removed by the equivalent of a family doctor or general practitioner. None had received pain medication or post-surgery follow-up care. One woman’s doctor had removed the wrong breast, but she was unwilling to undergo a second surgery, preferring the inevitability of death with one breast intact.

Kibugu-Decuir describes these women as desolate, frail, and frightened. They held no hope for survival. Rather, they told her, “We’re just waiting to see who will go first.”

If women couldn’t access the information needed to keep them alive, then the information needed to go to them.

Kibugu-Decuir’s instincts as an educator kicked in. If women couldn’t access the information needed to keep them alive, then the information needed to go to them. Kibugu-Decuir and therefore BCIEA had to take the message to the people.

Kibugu-Decuir trained the 27 women to become BCIEA’s first village ambassadors, carrying up-to-date breast cancer information and their experiences to their communities through civic events, church and professional groups, youth programs, and one-on-one’s. By sharing information through already trusted members of these communities, BCIEA facilitates conversation, spreading awareness and helping combat misperceptions that would otherwise silence discussions before they’d ever begun.

“When you are willing to give a bit of yourself, people listen,” Kibugu-Decuir says, “so I talk about myself and my sister. [Mabel] represents them, and they empathize with me, and I can gain their trust. I use the same method to train breast cancer survivors. Once they’re out of the closet, they become our ambassadors among their own people.”

Rwanda has made notable strides in cancer care in recent years. The country now has two oncologists and has opened its first national referral facility in northern Rwanda.

Once [breast cancer survivors are] out of the closet, they become our ambassadors…

But with so little access and information still available to most of the population and the ability to go abroad for treatment restricted to those who can afford it, combating breast cancer for much of the country’s poor rural and urban women is left to the women themselves.

“BCIEA’s goal is to place the Rwandan woman at the steering wheel as the key agent of change,” Kibugu-Decuir says. In the absence of mammography, for example, women are trained how to conduct breast self-exams, empowering them with preventative knowledge for themselves and future generations.

By 2016, 24 of the original 27 village ambassadors had died. But thanks in large part to their efforts, nearly 9000 people had been reached with potentially life-saving information.

Kigubu-Decuir’s work advocating for breast cancer victims has gained her friends around the world.

BCIEA has 17 ambassadors currently active, and Kibugu-Decuir has begun to expand the organization’s reach by way of an app that provides basic breast cancer detection and treatment information.

She is also working to raise enough money to provide one smartphone loaded with the app to each of 250 Rwandan villages. She estimates 250 ambassadors each equipped with a smartphone have the potential to reach up to 200,000 people.

“If I can get support for [the One Smartphone Per Village program], we can exponentially cover the whole country with awareness,” Kibugu-Decuir says. The program also lays the groundwork for expansion into Uganda, Kenya, and Tanzania.

Successes Big and Small

While BCIEA’s primary focus is to increase survival through early detection, the organization also works to support women during and after diagnosis. In this way, Kibugu-Decuir’s education efforts turn from the preventative to the practical.

This past October, for example, Kibugu-Decuir worked with Barbara Demorest (whom Folks featured last summer) to bring Demorest and volunteers from Demorest’s organization, Knitted Knockers, to Rwanda to teach 30 local women how to knit yarn-based breast prosthetics.

As part of the trip, “[Kibugu-Decuir] organized events, connected with key hospital personnel, met with [Rwanda’s] Minister of Health, and worked tirelessly to accomplish her mission,” Demorest says. “Philippa’s heart and focused purpose of spreading breast cancer awareness to the women of East Africa is so inspiring and contagious. The country is fortunate to have such a great advocate for their women.”

Although Kibugu-Decuir emphasizes that she’s “a teacher, not a politician,” BCIEA collaborates closely on activities and events with Rwanda’s Ministry of Health and Non-Communicable Diseases Department. She has also met with Parliamentarians and Rwanda’s First Lady.

Members of Breast Cancer Initiative East Africa and Knitted Knockers have teamed up to make knit prosthetics for women who have had mastectomies.

Kibugu-Decuir would love to live to see a cure for breast cancer and hopes to see the government expand its infrastructure further to help turn more diagnoses in Rwanda into survival stories like her own. She was declared cancer-free five years after her diagnosis and has since celebrated what she calls her 22nd “survisary.”

But she recognizes that success can also result by simply shining a light on the problem. As an example, she cites a crying woman who ran up to her last year, telling her, “You saved my life.”

“I said, ‘No, I didn’t,’” Kibugu-Decuir relates. “‘Actually, yes, you did,’ she said.”

In 2008, the crying woman had been diagnosed with breast cancer but had been denied a visa to go abroad for surgery: the government refused to grant medical visas to anyone who could be treated inside Rwanda. Barred from leaving the country, the woman resigned herself to die.

Then she came across an article Kibugu-Decuir had written that same year, urging Rwanda’s government to establish a policy to address the country’s need for cancer care services and clearly articulating the absence of available treatment options.

That article became the key the woman needed to open the door to treatment. The woman returned to the embassy with Kibugu-Decuir’s article in-hand, Kibugu-Decuir says, “and they gave her a visa.”

“Even if I don’t do any more, I’ve touched one life,” she says. “My sister is smiling up there, wherever she is. That’s the kind of little thing that makes what you do worthwhile.”

Profiles

No Shame In Her Scars

After three bouts of cancer, Koco Powell lives her life as an "open book" to help raise awareness in others.

On the morning of my telephone interview, Coqueace “Koco” Powell, couldn’t rev up enough energy to engage in a conversation about her five-year journey with breast cancer. She’d been up all night wrestling in discomfort at her Rockwall, Texas home. In addition to insomnia, she is riddled with the pain of neuropathy in her limbs, a side effect of cancer drugs.  Getting out of bed is draining.

“Let me get a lil’ more sleep and then we can chat, OK?” she said in a text.

About four hours later, we reconnect, but she’s still not feeling well. She can’t focus, so she asks for more time.

“I’m not myself, right now,” she says with a raspy voice.

A few more hours later, she is back to doing what she does best: speaking openly about the trials and triumphs of going through a vigorous cancer treatment regimen.

“I’m an open book,” she says.

kocopic

Koko Powell.

She shares every detail about her journey via social media and to whomever wants to listen. She talks about, and even shows photos, of her disfigured chest and burned skin—a permanent remnant of cancer.

Her chest has been a battlefield. She refers to the scars there as “tracks of war.”

Cancer first invaded her left breast in 2011 when she was 36. She had a double mastectomy, doctors removed 19 lymph nodes, and reconstruction implants were placed.

Thousands of followers on Facebook prompted her to inspire them to take charge of their health before problems get out of hand. When doctors discovered her cancer, it was at stage 3.  

She garnered the following after advocating for early detection Susan G. Komen ads and as a panelist at various breast cancer awareness conferences. Komen is a global organization charged with advocating breast health and screenings, community outreach, cancer research, and bringing financial support to women with breast cancer.

Powell glows and professes to continue beating cancer, all while wearing a bright smile, flawless makeup, her signature big ribbon-shaped earrings and a nearly bald head.

The former makeup artist and TV personality doesn’t wear makeup everyday, but when she’s feeling well, she likes to glam up and snap a selfie. Other times, she posts professional photos, most of which display a breast cancer awareness theme.

She also offers up inspiration to her audience to get a mammogram and not take their health for granted. Powell is loving and kind in her approach—never bitter. She’s joyous and thankful when she announces she’s in remission.

But she admits there have been times when she wanted to give up.

Last year, the cancer returned for the second time. It was at stage 4.

“I flipped out with this one, ” she says. “I don’t know if my body got mad at me or what, but I had a recurrence. I had tumors removed, the implants removed, and more lymph nodes removed. So that’s two different chemo ports, two different types of chemo meds, two different times.”

She’s in remission again, but said she understands the survival rate at this stage is much lower. The chances of recurrence is likely.

Powell first found a lump at 36 during a self exam.  

pinksurviving

Kicking ass and taking names.

“I kind of freaked out by the lump,” she recalls in a testimonial. I don’t have any money. I don’t have insurance. I don’t know what to do.”

But a doctor referred her to a resource that would ensure she received care through a Komen grant– a program that funds low income and uninsured women’s diagnostic testing and treatment.  

This began a long arduous journey that rocked her both physically and emotionally. She started a very aggressive chemotherapy regimen. In addition to the surgeries to remove her breasts and lymph nodes, she’s also had a complete hysterectomy–a result of the cancer drug Tamoxifen, which aggravated past gynecological issues.

This surgery was another blow to Powell, who is not married and has no children. While she regrets nothing, she admits she wishes she had the opportunity to have a family.

Powell takes eight pills a day and will undergo chemotherapy indefinitely. It’s a daily routine for 14 days, and then she gets a break for seven days. The cycle repeats.

Her treatments has riddled her hands with neuropathy. She keeps paper cups and plates to avoid breaking dishes, since she drops them because she loses a grip. She avoids driving, because her feet also are affected. The pain and swelling of neuropathy make her size 11 shoes too tight.

Her energy level is low and she experiences nausea and insomnia. Putting sentences together or holding a conversation without pauses is commonplace.

“It’s different everyday,” she says. “It just depends if I’m on chemo that week. I don’t like laying around, but sometimes I just can’t get up. I push myself to do it as much as possibly can. Believe me, I do.”

Powell, who used to live in a gym, is up to about 230 pounds, thanks to being sedentary and on steroids. She’s developed high blood pressure–a condition she’d never had to deal with before. For accountability, said she’ll  talk about this struggle on social media to push her into becoming a fitness enthusiast again.

In the meantime, she’s unemployed and was declined for disability payments, so she relies on the help of family and generous friends. Powell, a military veteran and self-described strong woman, still exudes confidence through the pain. She focuses on her survival daily, not getting distracted by petty things she feels do not matter.  

chains

No shame in these stars.

Powell doesn’t go on speaking engagements as often these days. Her treatments usually keep her from being as active, but she continues to update followers on Facebook, usually with updates about her condition and reminders to take charge of their health. She speaks about her religious faith often, which she attributes to her survival.

She gets feedback, prayers, and notes about how she helped followers take control of their health. When women are diagnosed with breast cancer, they confide in her.

She loves playing the role of a virtual cheerleader. However, it sometimes bears a heavy weight on her shoulders.

“Now other people are basically living because I’m living,” she says. “They fight hard because I fight hard.”

She adds, “At first I didn’t think I was motivating people and I became more selfish with it. I wasn’t sharing as much. But after a while, I realized many women are going through the same thing and they need (the motivation) just as well.”

Not all of her outreach is sugar-coated or cloaked in pink rhetoric. Sometimes, she is blunt and to the point. Her goal is to get women to the doctor for annual checkups and mammograms as soon as it is recommended. She reminds them to stay in tune with their bodies. After describing the ugliness of cancer, she sometimes adds “you hear me?” or “cancer ain’t cute” to her posts.

“There are a lot of women who will buy make up, get tummy tucks, extensions and lace front (wigs), but they won’t go to the doctor,” she says. “To me that’s a little weird. You’ll spend money on that but not the doctor–so busy making sure the outside is looking good.”

Being uninsured is no excuse, she says, referring to the Komen grants, other programs, and free annual checkups.

She’s especially concerned about black women. A Centers for Disease Control and Prevention study released last month shows that the incidence rate gap between black and white women is closing. In addition, black women still have a higher breast cancer mortality rate.

coqueace

Koko Powell.

“African American women under 40 are at a high rate right now,” Powell says. “Some of them are dying because it’s (diagnosed) so late.”

Regardless of her health status, Powell wants to continue educating women. She wants them to be more open about their experiences so they may compare notes and potentially help doctors improve treatment or even find a cure.

Powell is overwhelmed by the support from her family, friends and followers. She tries to pay it forward each day. She feels blessed to be a vessel of hope, love and kindness.  

“Everyday is not perfect but I have to keep thinking about my purpose,” she says. “God put me on this Earth to give to people, period.”