Monthly Archives: March 2012

Underreported Side Effect of Cancer: Vulnerability

Underreported Side Effect of Cancer: Vulnerability

After my immune system was trashed by chemotherapy, my doctors warned me I would be susceptible to infection for months. But no one prepared me for how emotionally defenseless I would become. In the aftermath of treatment, I felt exposed to a host of painful comments, emotions, and fears.

When I went back to work, for instance, I told only a few colleagues about my diagnosis. I couldn’t handle being smothered in sympathy every time I walked down the hall. I couldn’t deal with probing questions about my lumpectomy. And I couldn’t withstand the whispered stories about the coworker who had died of breast cancer four years earlier. My skin was too thin to protect against uninvited curiosity and concern.

Cancer leaves us feeling stripped down and vulnerable. Not only have we been subjected to physical indignities, but we have been laid bare by intense emotions—anxiety, uncertainty, fear of death. It’s no wonder we emerge feeling raw and unprotected against the next blow.

Betsey, who got breast cancer in her thirties, explained it this way: “Cancer tore me apart, and I am afraid to sew the tear up. Any minute now I could be ripped open again.”

Many of us try to guard against the next tear. Sometimes it comes from the insensitive things people say. I remember being rattled for days after a friend told me in gory detail about a woman who had a tumor like mine but died a painful death. Comments like that make us think twice about opening up again. One survivor said, “I’m afraid to tell some people I had cervical cancer, because they might ask about sexual partners. They make it out like it is my fault I got sick.”

Some survivors feel unexpectedly shy in social settings. I’ve spoken to a handful of women who moved soon after treatment, and they all struggled to break into their new communities. Their stubbly heads took a toll on their confidence, and residual fatigue left them with little energy for mingling. But it was making conversation that proved hardest. Idle chitchat seemed vaguely insincere, but introducing the whole cancer story was even more awkward—inspiring shock, confusion, or deafening silence. It’s no wonder it took several years for these women to feel at home in their new surroundings.

But it isn’t just the social unease that makes us feel vulnerable. It’s the cold hard fact that our health remains in question. Denny, who got nasal cancer at 28, told me, “I was always so pissed off that a blood test would determine everything.”

Most people in their 20s and 30s don’t have think about the frailty of life, but young survivors can’t escape it. Ethan was a 27-year-old jock until his sarcoma left him with a limp and a cane. “I was very sad for a long time. It was painful having to face mortality,” he told me. “I always felt indestructible. I was always flying down mountains and doing whatever sport I wanted. Always comfortable that nothing was ever going to happen. Then, at 27, I realized that’s not life.” Some survivors see this knowledge as a gift; some see it as a burden. Either way, it adds to our sense of fragility.

But here is the amazing thing: You can be mindful of mortality and still develop a thick skin. You can learn to let the cancer barbs bounce off of you. It just takes time.

I haven’t forgotten that I am lucky to be alive or that I am one bad biopsy away from cancer. But slowly, I have regained my protective layer. I can handle things I couldn’t have endured in the first years out of treatment.

I can read an entire news story about breast cancer research without panicking. I can hear someone say a thoughtless remark about my cancer, and instead of being hurt, I feel sorry they have a limited capacity for empathy. I can even catch a late-night rerun of Sleepless in Seattle without assuming my husband will become a widow and fall in love with someone else.

There are many ways cancer makes us stronger, but we have to accept the extra dose of vulnerability first.

Emily Cousins

Emily Cousins is a writer and editor who was diagnosed with breast cancer when she was 32 and nine-months pregnant with her first child. She is currently writing a book about what it’s like for young survivors once cancer treatment is over-when the radiation burns have healed and the hair has started to come back, but everything else is completely out of whack. After almost a decade living in New York City, Cousins now resides in Northern Arizona with her husband, son, and the daughter she was lucky to have post chemo.

Coping Through Creative Expression

Coping Through Creative Expression

Originally posted on Curetoday.com, the website of CURE magazine, a free publication for cancer patients, survivors and caregivers.

Fear can be one of cancer’s most debilitating side effects. Sparing no patient, survivor or caregiver, it is also the most common. Medical professionals, faith and loved ones can help you manage anxiety. So can a colored pencil, bottle of glue or keyboard. Art therapy provides a mechanism for working through difficult emotions and reducing stress. Regardless of how well you can draw a stick figure or write a haiku, creative expression can bring you comfort.

Many young adult survivors have turned to art to restore their sense of optimism and passion for life. Chris Ayers, an artist working in Hollywood, began a project he calls, “The Daily Zoo” on the one-year anniversary of his acute myelogenous leukemia diagnosis at age 29. As part of his recovery process from a bone marrow transplant, he set the goal of drawing an animal a day for one year. The result: a published anthology of rhino plumbers, alien possums and much more called, The Daily Zoo: Keeping the Doctor at Bay with a Drawing a Day, which was followed by Volume II–a second year’s installment of drawings. Will Reiser, screenwriter of50/50, is another high-profile example of a young adult cancer survivor who used comedy to come to terms with his traumatic experience, as well as to move forward.

Creative expression as a healing mechanism does not require talent. The only prerequisite is the willingness to face your fears. There are many paths for exploring the complicated mess of emotions that cancer causes. Cancer blogs have become a common means of therapeutic expression, with readers able to offer encouragement via the comments function. YouTube and other video-sharing services provide another medium for expressing oneself.

Transformative writing is a powerful strategy, which I’ve been practicing since my diagnosis with acute myelogenous leukemia in April 2011. My blog is entitled, “Shelley’s ‘Life’s a Beach’ Blog.” The Our Story page concludes with the thought: “As I wrote in my first post, life can be a b*tch, but we must always remember what a beautiful beach it is too.” The first drafts of many of my entries were much darker than the final posts. By reworking my thoughts into a version that wouldn’t terrify my family and friends, I lessened my own fear. Iterative writing can transform the worst of thoughts: “I’m going to die,” into “I might die,” into “I will survive.”

Although blogs and video logs offer easy ways to share your efforts, the creation–not the publication–is the essence of therapeutic art. Social media, with all the benefits it provides to the cancer community through connecting people and informing, happens at a speed that may be too fast for inner reflection. There may be points in your healing process when you need to slow down and focus inward in order to develop ways to turn negative thoughts into positive ones. Chris Ayers draws his animals with paper and pencil as his only companions. Will Reiser sat alone in front of a screen, drafting his script, long before the cast was hired.

Although cancer can make us physically weak, we are still a subset of a generation filled with energy and hope, a generation that wishes to leave its mark on the world through creative expression. You can be part of that movement, regardless of age.

For those attending the OMG! Cancer Summit, the workshop, “Pen to ePaper: Self Expression in a Digital World” can jumpstart or boost your artistic efforts. Existing cancer blogs can be a source of inspiration, as well as provide a way to connect with others who share your circumstances. Additionally, below are a few “old school” exercises to try:

• Collage – Magazines can be a breezy, low-brain requirement for passing time during a hospital stay or chemo treatment. Tear out the images that speak to you and assemble them on a page. What does the resulting collection tell you about yourself?

• Smiley (or not-so-smiley) Faces – Draw five circles on a sheet of paper. Fill in the facial features throughout the span of a day or week, when you’re in different moods. Try to be metaphorical: If you’re grumpy, turn the circle into a bear or a man with a stick up his… Allow yourself to laugh at the results.

• Playing Dr. Dre – Combine lyrics from five songs to fit how you feel.

• Dear Cancer – I Had Cancer has a great page entitled “Dear Cancer.” Users post their messages to cancer. Write a letter to cancer, and don’t hold back.

Regardless of how you chose to express yourself, do so with abandon. Cancer doesn’t restrain itself. Why hold back when coping with it?

 

Shelley Nolden

Shelley Nolden is a mother, a wife, a financial analyst, and a writer. In March 2011, an obstetrician informed her husband and her that their five-month-old unborn baby girl had no heartbeat. A week later, Shelley was diagnosed with acute myelogenous leukemia (AML), subtype 3 (APL). Shelley is currently in remission and receiving treatments to maintain that status. Like the rest of the Cancer Club, Shelley is trying to adjust to her new reality while keeping a positive mindset. Read more at www.shelleynolden.blogspot.com.

The Cure for Cancer Loneliness: Find Other Young Survivors

The Cure for Cancer Loneliness: Find Other Young Survivors

As soon as I recovered from my last round of chemo, I decided to bring my baby to a Mommy & Me class. Most mothers would consider this a routine outing, but for me it was groundbreaking. The first five months of my son’s life had been dominated by my cancer care. I was desperate to do something normal parents did.

But there was no escaping the truth: it’s hard to pass as normal when you are the only bald mother in the room. I pulled my little woven hat down as far as I could and fluffed up my remaining eyebrows, but as I listened to the other moms worry about sleep patterns and nursing cycles, I felt like a visitor from another planet—one where sleep was more likely to be disrupted by fears of metastasis than by a restless baby.

I was used to being the odd-man out at my oncologist’s office, where I was always the youngest patient. I had come to this group of young mothers because I wanted to blend in again. Instead, I left feeling more alienated than ever.

Getting diagnosed with cancer in your twenties and thirties can be a lonely experience. Our neighbors in the chemo room are usually three or four decades older than we are. And our friends at the bar or the office don’t know how to help someone through a life-threatening illness yet.

Sometimes even the experts don’t know how to respond to us. Nita got diagnosed with breast cancer at 27 during her third year of law school. She had seven months of chemo, a double mastectomy, and failed reconstruction before a second round of breast implants worked. She felt overwhelmed by the changes in her life and decided to talk with a therapist.

At first she went to someone who focused on post-cancer issues. “But she was older,” Nita said. “Her clients were mostly older women. I was 28, thinking about having my ovaries out, because I have the genetic mutation. But I want to have kids. I couldn’t believe I had to deal with these decisions—I should be thinking about what I am doing on Saturday night. This therapist was used to working with clients who already had grown children. It wasn’t a good fit for me.”

I was lucky enough to find a fantastic therapist, but I still had moments of disconnect with my friends. I felt it every time I had a scan and someone said, “Don’t worry about it; I am sure you’ll be fine.” I felt it every time a friend complained about having the flu or turning 35. And I felt it every time I had a question about chemo-induced menopause but didn’t know whom to ask.

My therapist recommended I go to a post-treatment support group for young survivors. I will never forget the feeling of walking into that room, looking around at the other faces, and thinking, “I can’t believe all these people had cancer. They look so normal.”

I still thought there was something freakish about having cancer as a young person, but the people in that room proved me wrong. As we began to talk that night and over the course of the 12-week workshop, I realized I had finally found my people.

They spoke the same language as I did—a dialect of bone scans, blood work, and recurrence fears. But they were also my age, and they talked about sex and fertility and how cancer robbed us of our youthful bravado. They could understand in a look or a phrase what it took paragraphs to explain to a non-cancer friend. And they never winced when the talk turned dark or gory.

“The majority of America doesn’t like to talk about things that are uncomfortable,” Denny, a survivor in his late twenties told me. “That’s why the cancer community is so great. You can say, ‘Oh my god! They poked me in the boob and my nipple exploded!’ If I am not around people who get that, it’s no surprise I feel lost.”

The conversations I had at those workshops and in the friendships I forged there made me realize I actually was normal—as normal as a woman who gets cancer at 32 can be. The isolation started to melt away.

“After treatment you feel like an alien,” Denny explained. “Then you see another survivor and you realize, ‘That’s one of my own.’”

If you haven’t found your own yet, there is no better place to start than here at Stupid Cancer or at the OMG National Cancer Summit for Young Adult at the end of this month. Even if you can’t get make it to Vegas for the Summit, remember: you are not alone. Other young survivors are a click away.

Emily Cousins

Emily Cousins is a writer and editor who was diagnosed with breast cancer when she was 32 and nine-months pregnant with her first child. She is currently writing a book about what it’s like for young survivors once cancer treatment is over-when the radiation burns have healed and the hair has started to come back, but everything else is completely out of whack. After almost a decade living in New York City, Cousins now resides in Northern Arizona with her husband, son, and the daughter she was lucky to have post chemo.

Celebrate Good Times

Celebrate Good Times

Originally posted on Curetoday.com, the website of CURE magazine, a free publication for cancer patients, survivors and caregivers.

Almost six years ago, a few months short of my 29th birthday, I was diagnosed with a rare pediatric cancer, Ewing’s sarcoma. Yes, pediatric. So despite my age, I was treated in the children’s ward, which certainly had its upsides. Anesthesia for procedures adults are usually expected to just grin and bear, like bone marrow aspirations. Posh accommodations with flat screen TVs and advanced screening DVDs of movies out in the theaters. The kids’ menu.

The downside, of course, was that people my age were few and far between. I wasn’t by any means the only adult pediatric patient (or geriatric ped as I like to say), but I was twice as old as the teen-aged patients who were the cohort closest to my age.

About a year after I finished chemo, the organization I’m Too Young For This! hit the headlines in The New York Times and Time magazine. I’d previously joined a young adult support group at Gilda’s Club in Manhattan, but it was only three people and myself. But i[2]y, as it’s abbreviated, was a gateway to a slew of young adult survivors in New York City, where I lived at the time and where the organization is based.

I attended some of their happy hours and their annual “Un-Gala” and even participated in discussions on next steps for the organization. It was invigorating to meet people my own age who’d been through the cancer machine. Or were still going through it.

At the end of this month, I’m attending i[2]y’s 5th Annual OMG! Cancer Summit for Young Adults in Las Vegas. Despite the fact that the event has been held in New York City, or at least New York State, for most of the previous conferences I was never able to attend. But Vegas is incredibly motivating, as is the program of the conference, particularly the events surrounding the movie 50/50.

Seeing 50/50, in which a young man has a spinal tumor not unlike the one I had, was another turning point in my cancer recovery. At the OMG! Summit, the movie’s writer, Will Reiser, who based the story on his own experience, will be honored and the film with have a midnight screening. It was moving to watch in the theater, but I anticipate that watching it surrounded by other YA survivors will be an entirely different experience. I think we won’t be as afraid to laugh at the funny bits because we get that it’s not all doom and gloom. (When I saw it in the theater with a lay audience, I noticed that the room got rather awkward when the movie took non-serious turns.) You have to take the humor where you can.

I’m also psyched to see old friends from i[2]y New York and my new i[2]y Boston family, as well as people I met a few summers ago at the survivor kayaking camp, First Descents. And then there are a handful of people I’ve been in touch with but never met. Like Jonny Imerman, founder of Imerman Angels, a foundation that matches survivors out of treatment with survivors in treatment of a similar age and diagnosis. I’ve twice been a mentor for Imerman Angels and corresponded with Jonny, but the times he’s been in Boston (where I live now), I’ve been out of town and we’ve always wanted to connect.

Overall, the conference may be more social than clinical, and that’s fine by me. We spend so much time getting poked and prodded and juiced up on chemo and blasted with radiation that some partying is in order. That’s what survival is all about, right?

Su Ciampa

A New York-based writer, Su Ciampa has written about everything from losing her virginity by way of an unconventional medical procedure for Jane to turning the World Trade Center site into a buffalo paddock for Salon.com. Su has also written essays about arts and culture for ARTNews, Budget Living, Bust, Edible Brooklyn, Seventeen, and Time Out New York, as well as Nerve.com. She recently completed work on No Clowns Please, a memoir about being an adult patient in a pediatric ward.

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