Why My Life as a Cancer Survivor Feels Like a Ticking Time Bomb

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Sometimes I feel like a ticking time bomb. I know I shouldn’t, but sometimes — late at night, when I can’t sleep — I do.

I know it’s better to think positively, and I’m pretty good at being my own personal cheerleader. But two years and counting since my breast cancer diagnosis and surgery, and 18 months after post-chemotherapy, I can’t help but think. I can’t help but overthink.

I’ve taken all the precautions. I’ve become more conscientious about my diet and exercise. I take Arimidex every morning to keep the estrogen level that originally fueled my cancer at bay. I take lots of vitamins. But still, that’s no guarantee.

I go for checkups when I’m supposed to, every three months to the oncologist and every six months to the breast surgeon. I go to support group meetings to bolster myself. I try to get enough sleep, despite the occasional night spent wide-eyed with dread.

I don’t have any symptoms, but I didn’t have symptoms when I was first diagnosed. I couldn’t feel the lump — smaller than a dime — even after it was pointed out to me. It turned out I had not one, but two types of breast cancer (DCIS — ductal carcinoma in situ — and invasive carcinoma). When my surgeon very prudently removed the entire mass during the biopsy, the margins still weren’t clear. Then I had a mastectomy with a chemo chaser for three horrific months, just to be sure they got it all. (P.S. They did.)

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For the most part, I feel confident. I’m a one-woman breast cancer survivor pep squad for others, as well as for myself. I proudly flash the cherry-blossom tattoo I got more than a year after my surgery to mask my pancake-flat left side and cover my mastectomy scar when reconstructive surgery failed.

But, in the back of my mind, there’s always that “what if.” What if it comes back?

If you’re diagnosed in Stage 1, like I was, the stats show your chances of recurrence are only 14 percent. Only. At first glance, that seems like pretty good odds — until you imagine standing in a roomful of 100 women and picture 14 of them disappearing.

Mine is not an idle fear. It’s a reality. It seems like every other day I hear about breast cancer recurrence, or worse, someone dying after their second bout. A family friend I grew up with. My haircutter’s mother. A neighbor. When breast cancer comes back, it comes back with a vengeance. Oftentimes, it isn’t discovered until Stage 4, already metastasized into the bones, lungs and beyond.

The five-year cancer-free anniversary is a huge milestone, but for many estrogen-positive women faced with recurrence, if it comes back, it generally returns right under the five-year threshhold. Will I be one of them? There’s no way of knowing.

But instead of curling up into a hard ball of anxiety, I’m doing just the opposite. I’m throwing myself into my work and writing at a breakneck pace. At 55, there are so many things I still want to do, so many stories I need to tell. I want to live to see my son graduate from high school, from college, dance badly at his wedding, hold my first grandchild.

When I wonder if I should get those crazily expensive Patti Smith tickets (she’s not getting any younger and neither am I), I usually just say, “Screw it!” and go for it, remembering how simultaneously drained and wired I felt getting a chemo infusion, how I promised I would deny myself nothing if I lived through this.

Sometimes I feel like I’m dancing as fast as I can, trying to outrace cancer in case it tries to visit me again. Maybe this time I can outsmart it. Maybe this time my body won’t be such an agreeable host.

I try not to live in worry. I try not to dwell on it. But there are times when I feel like a ticking time bomb. I guess I always will. But that’s better than the alternative — having the time bomb explode and not being here at all.

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This story by Catherine Gigante-Brown first appeared at ravishly.com, an alternative news+culture women’s website. 

More from Ravishly:

25 Pieces of Advice for Anyone Going Through Chemo

After Losing Three Sons

Why Do I Get to Be “Cancer Girl”?

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The Day a Bodybuilder Came to My Aid

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Growing up with cerebral palsy, my entertainment options have always been limited by the need for accessibility, but one thing I’ve enjoyed since childhood is going to the movies. Watching VHS tapes and DVDs at home is fun, but nothing beats sitting in a large, darkened cinema, eating popcorn.

While in high school, I spent many Saturday afternoons at the small movie theater near my cousin’s house. Sure, the releases were weeks (sometimes even months) behind the larger corporate theaters, but the staff always treated me with kindness and respect, happily pouring my drink into a bottle so I wouldn’t have to worry about squeezing the polystyrene cup too tightly. This particular request sounds simple, but it was often refused in other places because using bottles, regardless of the fact that they were exactly the same size (we measured), was “against the rules.”

Looking back on those times, one specific Saturday comes to mind. I can’t recall what we saw that day, but I do remember riding the elevator (or as we call it in South Africa, the lift) to the three-story shopping center’s second floor, where the theater was. After the show, we said goodbye to the woman in the ticket booth and headed back down the hallway, only to find the lift was now out of order.

As usual, our car was parked in the disabled bay on the roof and without the lift, the only way to get there was to climb two large flights of stairs. Being slowly hoisted upstairs in a manual wheelchair is something I avoid whenever possible, especially if it has to be done by one person. I find the experience deeply unpleasant because it must be done backwards and I’m fully aware that if the unfortunate hoister slips, I’m bound to get hurt somehow.

On that Saturday, we had resigned ourselves to this fate when a woman with a young daughter arrived and quickly realized our predicament. After thinking for a moment, she had the bright idea to go to the gym across from the theater and ask for help. (Why we didn’t consider that, I’ll never know.) Soon after, a friendly and rather muscular young man appeared. He said, “I’m not quite sure how to help, but just show me what to do.” Instead of doing the “backwards chair shuffle,” he and my cousin carried me to the roof and put me back in the chair once it had been brought up behind me by that wonderful woman.

I never did get the names of either the quick-witted mother or the helpful bodybuilder, but I’ll always remember their actions when I or someone else with a disability need to be reminded that many able-bodied people do care enough to help us when we need it most.

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The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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These Artists Prove You Don’t Need 46 Chromosomes to Create Stunning Art

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One organization is ensuring the world gets to see some incredible art created by people with Down syndrome.

After Suzie Moffat’s son, Max, was born with Down syndrome in 2007, she became increasingly fascinated with the creative nature of people with the condition. With a background in the art world, it made sense that Moffat, from Cheshire, in Northwest England, began to interpret this new perspective on the world through art.

“It was my way of trying to understand his condition,” Moffat told The Mighty.

Suzie & MaxMoffat
Suzie and Max Moffat (copyright Paul Moffat Photography)

She began working with the Down Syndrome Association in the United Kingdom to put a call out for artists.

“The idea originated just as a way to meet other families,” Moffat told The Mighty. “But, then I started to realize the talent was incredible and the artists deserved to be recognized.”

So Moffat and her partner, Paul Moffat, put together a small public preview exhibition in 2012. It was a success, and Heart & Sold was born.

Since then, Heart & Sold’s public acceptance has continued to grow — the Duke and Duchess of Cambridge even accepted one of their original works of art for Prince George’s nursery in 2013.

Heart & Sold’s goal is to support and encourages all kinds of artists with Down syndrome, from photographers and filmmakers to various types of visual artists and sculptors. Its staff works closely with the artists and their caregivers and are often thrilled to see them go off on their own to host successful solo exhibitions and receive commissions.

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Suzie Moffat with Heart & Sold artist (copyright Paul Moffat Photography)

The organization continues to grow — this fall it’s putting on exhibits in London and Manchester, as well as hosting its first international exhibition in New York City in October.

But despite all the exciting progress, Moffat says it’s really all about the art. Art, she says, that can stand on its own merits and doesn’t need to be defined by the condition of the person who created it.

“At the end of the day, who made the art, whether or not they have Down syndrome, doesn’t matter,” she told The Mighty. “It’s whether or not you want to put it on your wall.”

Check out some of the Heart & Sold artwork and artists in the images below: 

'Dollar Pancakes', photograph by Rachel Handlin
“Dollar Pancakes” photograph by Rachel Handlin (Copyright Heart & Sold on behalf of the artist)
Sunset & flowers, Cornwall
“Sunset & flowers, Cornwall,” acrylic painting by Tazia Fawley (Copyright Heart & Sold on behalf of the artist)
Dominic Bennett, Artist
Dominic Bennett, Artist (copyright Paul Moffat Photography)
Aurora Freeze, acrylic painting by Anthony Childs
“Aurora Freeze” acrylic painting by Anthony Childs (Copyright Heart & Sold on behalf of the artist)
Robert Dixon, Artist
Robert Dixon, Artist (copyright Paul Moffat Photography)
Sonic Screwdrivers, Ceramics by John Groarke
Sonic Screwdrivers, Ceramics by John Groarke (Copyright Heart & Sold on behalf of the artist)
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Amy Ellison, Artist (copyright Paul Moffat Photography)

 

Check out the Heart & Sold website for more information on upcoming exhibitions, or to learn more about the artists. 

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Why I Don’t Have to Ask If My Brother With Special Needs Knows I Love Him

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Sometimes, I casually throw into a conversation that my brother is my favorite person. This is a truth. This is something I know for sure.

Benjamin is 3 years younger than me, and I don’t remember life before him. My older sister insists I was feisty and the terrible twos hit me hard. Apparently, I made a strange guttural sound while drinking juice and had a haircut like D.W. from “Arthur.” They used to dress me in pink. It was a weird time.

Then Benjamin came along, but I don’t remember that, either. There are pictures of me when I was 3, holding a stuffed panda bear and looking oblivious, while my mom has a look of sheer panic on her face with eyes turned upward to the sky.

I hear stories of my parents’ confusion. They didn’t know anything would be different until he was born, and then the list didn’t stop growing. His brain was severely underdeveloped, he was deaf, he wouldn’t walk, he was blind. “How will he know that we love him?” they asked.

I don’t think I ever asked that question. I don’t really remember, but I’m pretty sure I didn’t. I’ve always known he knows I love him. It’s a fact.

Here’s the thing: I don’t remember life without my brother. He’s just that, my brother. He’s a goof who loves it when I sing as loudly as I can in his ear, push him as hard as I can in the swing and put weird spices under his nose while we’re cooking.

I know he is who he is on purpose. It’s hard for me to understand when people say it’s so sad and so tragic. It isn’t. To me, it’s a beautiful reality. I have a favorite person in the world, and it’s him.

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Follow this journey on Arms Are for Good.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Teen’s Interview With His Grandma Reveals Harsh Realities of Alzheimer’s Disease

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Justin Boswick sees film as more than just a storytelling medium — he views it as a way to make a difference.

The 17-year-old from Medford Lakes, New Jersey, recently created “The Word Search,” a short five-minute documentary (video below) about his family’s experience with Alzheimer’s disease and a loving tribute to his grandmother.

The film centers on Justin’s interviews with Dorothy Landis, his grandmother who lives with Alzheimer’s disease, and Jennifer Boswick, Justin’s mother and Landis’s daughter. A third interviewee, Krista McCay, is the Director of Programs and Services at the Alzheimer’s Association.

Against a backdrop of old family photographs, video footage and snapshots of Landis’s current room in an assisted living home, Justin asks his grandmother questions about her previous years. He and his mother show her old photographs to try and trigger memories, but she has difficulty remembering and discussing them.

“Do you know that you’re diagnosed with Alzheimer’s disease?” Justin asks his grandmother in the film.

“No, I don’t know anything about that,” she replies.

Justin told The Burlington County Times he enjoys making films that resonate emotionally with viewers. He hopes the documentary helps people learn about Alzheimer’s disease and how severely it can affect families.

“You’d be hard pressed to meet someone and they say they have no idea what Alzheimer’s is or that they haven’t been impacted at all,” McCay says in the documentary. “Whether it’s a grandmother, an uncle, a mother or a father, somebody knows somebody with the disease.”

Watch the documentary in its entirety below.

“The Word Search” will be screened at the Princeton Student Film and Video Festival on July 23. It was one of 24 films selected from more than 200 submissions.

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Why This Amputee Army Veteran Is Suing a Six Flags Theme Park

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I’ve never felt disabled,” Larry Panayi says in the video below, “until that day.”

Panayi, an amputee veteran from Fort Worth, Texas, was visiting the Six Flags Over Texas theme park with his family in 2013 when ride operators refused to let him on as many as 13 rides, CBS News reported.

Now, he’s suing Six Flags for disability discrimination.

Panayi says the park would not allow him on the because he has only one leg, despite the fact that in the past he’s been allowed on with no problems. His lawsuit claims that the park’s decision to not allow certain amputees to ride is based on speculation about abilities and not on actual risks to the rider or others.

I’m here with my little nieces and nephew who look up to Uncle Larry who can do anything and accomplish anything despite his quote unquote disability,” Panayi told CBS News. “And they’re hearing somebody tell me I can’t ride a roller coaster? It’s just not right.”

Get more on the story in the video below: 

 

The Mighty reached out to Six Flags Over Texas for comment but received no response. 

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