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BY GUEST BLOGGER | MARCH 22, 2012
I went skinny dipping last month. That might not seem worthy of a news flash, but the fact that I uncovered my post-lumpectomy chest in front of people who were not medical professionals is groundbreaking.
I used to be comfortable in my skin, but getting diagnosed with breast cancer at the age of 32 changed that. Multiple surgeries left me with angry scars and an altered shape, while radiation made me unable to tolerate underwire. Clothes that used to fit no longer did. Compliments my husband paid no longer rang true to me, though I never doubted his kind intentions. And situations that were once routine--wearing form-fitting clothes, shopping for a bathing suit, changing in front of a friend--now made me self-conscious.
I knew I was lucky to be alive, but I wished I didn't have to trade in my confidence to regain my health.
No one welcomes the makeovers cancer provides, but young survivors can have an especially hard time adjusting to these abrupt changes. We enter treatment at the peak of physical fitness, and we are shocked to discover our bodies may never look or feel the same.
Page Tolbert, a former oncology social worker at Memorial Sloan-Kettering, says the physical alterations can trigger emotional ones as well. "Every single time that I have been in a room with young cancer survivors--every single time, I can't think of an exception--I hear two words: damaged goods," explains the middle-aged Tolbert. "At my age, everyone feels like damaged goods. But to be young and feel as if you are not all that you should be or that pieces of you will never be back in place, it is a terrible feeling."
Now we attract a kind of attention we never wanted. One survivor I know had three surgeries to treat testicular cancer, and now he has 24 inches of scar tissue lining his torso. "When I go to the beach, I look like Frankenstein," he said. "I went to a bachelor party at the beach. I didn't want people to think: 'Poor Dave, he had cancer.' I just wanted to be one of the guys hanging out. I was able to drink enough beer to get past it."
Even when we aren't pulling off our shirts, we still think people can see the harm done by cancer. My friend Kathleen was 38 when she had a mastectomy and reconstruction with a saline implant, and now she constantly questions whether people notice the difference. "I was in yoga class this morning, and one boob is sagging to the side and one is standing up. I can't help think, 'Can everyone else tell?'"
It's especially painful when we feel damaged in places that contribute to our sense of masculinity or femininity. Alex got diagnosed with testicular cancer in his early thirties. He had one testicle removed and decided not to get a prosthetic because he didn't want to undergo another complicated procedure. But two years later, he thought a prosthetic might have helped with self-esteem, "which took a hit," he says. "It is emasculating. It makes you feel less like a man. I still have issues with that in terms of self image."
Kathleen told me, "Now I look down at myself and see a weirdly put together nipple somebody tried their best to assemble from skin. My doctor said, 'To be honest, we can make you look good in a bra or bathing suit.' But you get naked with your husband, and I doubted him and his reaction. My husband would say 'It's great. You look wonderful. You are healthy. It's not what I focus on.' But I needed convincing."
Many of us need that kind of convincing. Some get it through the reassurances of loved ones. Some get it by hooking up with new partners. Some get it from a new appreciation for what our bodies can endure. Amee, who got breast cancer at 27 said, "You learn just how amazing your body is and that's its capable of more than you ever imagined."
For me it's been a matter of time. My scars don't upset me as much as they used to, because I feel safer in my prognosis. I have also seen how positive forces like childbirth have altered my body as well. While I haven't regained my pre-cancer élan, I do see more skinny dipping in my future.
Emily Cousins blogs about young survivor issues at Stupid Cancer Blog and Huffington Post. She is also writing a book called Back from Cancerland about life after cancer for people in their 20s and 30s.
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BY GUEST BLOGGER | MARCH 12, 2012
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 of 50/50, 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 is a mother, a wife, an investor relations professional and a writer. Shelley is currently in remission for acute promyelocytic leukemia (AML, subtype M-3) 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.
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BY GUEST BLOGGER | MARCH 5, 2012
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 has written for Jane and Salon.com. She recently completed work on No Clowns Please, a memoir about being an adult patient in a pediatric ward. Su also posts on the Stupid Cancer blog and will be attending this year's OMG! Cancer Summit at the end of March.
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BY GUEST BLOGGER | NOVEMBER 27, 2011
"I'll have a diet coke and the chicken sandwich with the veggies," I said to the waitress as I sidled up to the counter. I grabbed a book and began to read as I waited, trying to tune out the loud hum of the restaurant-goers. I've always loved coming to EJ's on my lunch break for both the atmosphere and the food. The large picture windows provide a clear view of the busy Little Rock street corner. The people walking by and the cars driving through the intersection reveal a city burgeoning with commerce and travelers.
The food at EJ's is good too. Besides the usual burgers and fries, they've also got healthier menu options like wraps, veggies and the like. I try to eat healthy as much as I can since my wife is always on my case to eat healthier. To be completely honest, I don't blame her. My diet will never be confused with Jack Lalanne's, so I'm fortunate my wife is always looking out for both of us. She frequently reads healthy cookbooks, so she can buy low-fat foods and cook heart-healthy meals. As a result, we've both been committed to healthy lifestyles and the two of us even ran a half-marathon last year.
At the EJ's counter, I tried to read my book over the sounds of the restaurant behind me when my phone began to ring. I normally don't answer on my lunch break unless it's the mayor (my boss) or my wife (my real boss). In this case, it was my wife, so I answered. I could barely hear her, so I pushed my seat back and stepped outside. "The doctor called. I have Hodgkin's lymphoma."
Boom! Crash! If my life were a cartoon, a ton of bricks and a grand piano would have fallen on my head. How could this happen? We were so healthy! What does this mean? What do we do now? What do I do? I would spend the next five months trying to figure all this out, flailing about in my new role as caregiver to a beautiful, 36-year-old cancer patient.
The idea of me as a caregiver is a bit laughable. To me, a clean room means I've piled my dirty clothes in a recliner rather than on the floor. A clean living room means I've moved the dirty dishes to the sink in the kitchen.
When faced with no choice but to sink or swim, one quickly learns to dogpaddle. Learning to be a caregiver is a similar experience (but not as wet). As I began my journey as a caregiver, I learned that everything becomes much easier when you're surrounded by supportive people and structures.
My own employer, the City of Little Rock, could not have been more supportive. I was glad to have an employer that wanted to make sure I never had to miss a single one of my wife's appointments, scans, exams or treatments. They have also been flexible on those days when I have needed to go home early on short notice or come in to the office late.
In addition to allowing me to take off when necessary, the city's policies allowed for me to take any hours I'm away from work providing care for my wife to come out of my sick leave rather than my vacation leave. Not that Elizabeth and I have the time or money to summer in The Hamptons, but it's nice to know I'm able to preserve the vacation days to do it if I wanted.
Being a caregiver is important, but it's not glamorous. Many people will recall that James Brady blocked a bullet meant for President Ronald Reagan in 1981, but even the most astute observers of American history would not recall the names of either injured man's nurses. Caregiving is humble work, focused outwardly rather than inwardly – a task more humbling in today's self-referential world of Facebook status updates, tweets and so on.
A caregiver's work is not measured by his own accomplishments but by the success of the patient. Success isn't found in washing the dishes or taking out the trash but in creating an environment in which the patient doesn't have to worry about such mundane things.
Through my role as caregiver, I've become a better person. I'm definitely a better housekeeper, but I'm also a better scheduler, a better friend and a better husband. With two chemo treatments to go (and radiation after that), my wife still has quite a road to travel, but it's a road we know will lead to better days ahead. I look forward to those days when I'll be able to sidle up to the bar at EJ's with all this a distant memory. Until then, I'll continue in my role as a caregiver, trying to dogpaddle as fast as I can.
Griffin Coop is a native Arkansan who works in the Little Rock Mayor's Office. He holds degrees from Syracuse University and Boston University and is currently pursuing a Master's degree in Public Administration at the University of Arkansas at Little Rock. Griffin enjoys college football, Southern literature and chasing the squirrels away from his bird feeder.
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BY GUEST BLOGGER | SEPTEMBER 23, 2011
September is Childhood Cancer Awareness Month. While I am proud to be a part of the childhood cancer community, I sometimes feel that as our children graduate from active treatment back into the real world we can lose sight of the value of the close relationships we have formed along the journey.
This year, one of my objectives for childhood cancer awareness month is to shed light on the true scope of the challenges facing our youngest cancer survivors.
Childhood cancer survivorship is both a burden and a blessing for our children and a lifelong battle no matter how long that life may be.
My son Gabe is a 9-year-old cancer survivor. He was diagnosed at the age of 1 with a soft tissue tumor in his sinus passage. Gabe now struggles with the side effects of chemo, radiation treatment and repeated surgeries. Most acutely, 28 radiation treatments destroyed his pituitary gland and arrested the growth of his jaw on the right side. After falling off the growth charts for a while, he is finally growing with the help of a human growth hormone. Unfortunately, as Gabe's growth speeds up so does the deformity of his face on the right side.
Photo by Red Pepper.
Far from being singular in the late-term effects of cancer treatment, Gabe, in fact, is exposed to an amazing community of friends who live contentedly with amputated limbs, graft-versus-host disease, cognitive delays and/or secondary cancers.
It is vital that our children learn to rely on their cancer community as they are likely to live for many years after active treatment ends. As they grow, the long-term effects of cancer treatment become much more evident and extreme. Some, like Gabe, suffer greatly as their bodies and brains were not fully grown or developed when treatments were administered.
The side effects of childhood cancer are not only physical, there are emotional burdens of survivorship too. Guilt and worry are prevalent among parents of survivors. Our children are encumbered by having been exposed to very adult medical issues at such a young age that they can have difficulty relating to children their own age. Survivors of childhood cancer can be overly anxious and some even suffer from post-traumatic stress disorder (PTSD). Hardly surprising when most of them have to use both hands to count the number of good friends they have lost.
With all the responsibility of carrying the torch for lost friends and dealing with both medical and educational issues it may seem like the blessings of childhood cancer survivorship are hard to find - but they are in abundance.
As parents we are blessed to know that we are not alone in the issues of raising a survivor. We commune in online networks, in chat rooms or in-person support groups at organizations like Gilda's Club.
Our children are blessed to live in a time when there are survivorship clinics with incredible teams of doctors to chart and treat the long-term effects on our children's bodies and minds.
There are opportunities to find kinship and camaraderie at survivorship camps, where, for one week, our heroes lose the burden of being a curiosity and enjoy being around true peers.
As I work to educate families through my non-profit organization, Gabe's My Heart, I communicate a very clear message of optimism. The concept is that by encouraging and empowering families, we enable them to stay composed and focused as they face the diagnosis of childhood cancer together as a family. I strongly believe that we can carry this philosophy forward through to survivorship.
The relationships my family developed along our journey have helped guide us through the worst times in Gabe's treatment. Those same friendships are still the ones I rely on for support in my times of doubt and frustration. By nurturing those friendships I stay close to my cancer community, and I am reminded not to focus on the burdens of survivorship. We received the most amazing blessings from cancer survivorship, and that is Gabe himself. He is here with us still and we will face his late-term effects, whether medical or emotional, together as a family.
Photo by Red Pepper.
Lu Sipos is founder of Gabe's My Heart, a non-profit organization that provides education and support to families and children with cancer through its Chemo Duck program. She lives in Spring Hill, Tenn. with her husband Rob and movie star, cancer survivor, son Gabe.
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BY GUEST BLOGGER | JULY 11, 2011
As it has with many young adults, cancer robbed me of my fertility. In back-to-back surgeries, I lost all of my reproductive organs. My doctor's initial attempt to preserve my fertility proved impossible, when early-stage cancer was found in my uterus. Within two weeks of my diagnosis of stage 3 ovarian cancer, it became clear that I would never be able to bear a child.
The question of whether I would lose my fertility was not prolonged, or ever in doubt, after those few brief days between the initial detection of my tumor and the pathology report from my first surgery. It was a done deal almost from the outset. At the time, I was busy focusing on staying alive – there wasn't much psychic space to mourn the children I would never bear. That process of mourning was destined to take much longer, after the rigors of treatment ended, when the physical scars of my illness began to heal and the emotional ones began to assert themselves.
Three years on, the sadness of not being able to have my own children persists in some remote way, but is tempered by the fact that my husband and I are now "waiting parents." Last fall, we connected with a wonderful adoption agency and, rather joyfully, completed all of the requisite paperwork, profiles and trainings. It felt amazing to take clear steps to building our family, to prove that we could still realize our dream of being parents, even after cancer. We had heard many adoption horror stories, but as our own process unfolded, we felt nothing but support and positivity.
We are now about four months into our wait for our child – in adoption terms, this is a mere blink of an eye. Still, because of the specter of cancer, it feels like an eternity, and in my weaker moments, I find myself gripped with a fear that because of my cancer, our child will never come.
Ours is an infant adoption program; the agency works with birth mothers to make adoption plans for their babies. In most instances, the birth mothers "choose" the adoptive family. The choice is based on a birth mother's review of a profile the adoptive parents create, including autobiographies, photos and a letter addressed to the birth mother. The agency provides any additional (and permissible) background information on the adoptive parents to help the birth mother make her decision.
When my husband and I created our profile, it never occurred to us that my cancer wouldn't occupy a central place in the story of what led us to adoption. In my own autobiography, I felt compelled to write at length about my cancer experience, how it changed and strengthened me. We felt that anyone who wanted to understand what we are about as people would need to know about cancer.
When our profile was almost complete, we had an unexpected conversation with our social worker: "You might," she began, somewhat sheepishly, "want to think about taking out the reference to cancer in your Dear Birth Parent letter." The letter was the first page of our profile, and served as a quick introduction; later in the profile, each of our autobiographies contained more detailed information. Our agency told us repeatedly that women often never even read the full autobiographies, that they tended to rely on the photos and opening letter.
We got the picture right away: Put your cancer in the closet. Subtext: Women are not going to want to place their baby with you if they know you've had cancer. Needless to say, my husband and I both bristled, and we got into our one and only uncomfortable conversation with our social worker. In the end, though, we acquiesced. The point is to adopt a child, not to go on a crusade and try and educate every birth mother who reads our profile about the fact that cancer doesn't have to be a death sentence. So we set our convictions aside, and left the cancer reference out of our opening letter.
Still, maybe because of that one difficult conversation, or maybe because I can never fully escape from the reality of how cancer permanently altered my path to parenthood, I carry this fear: I fear that because of my cancer, I will never be a parent. Never mind that our agency's director always makes a point of telling waiting parents: "Everyone in this room will be a parent." She means it, and in my rational mind, I know it's true. Our patience and determination will be rewarded; our child will come to us.
But when I sit in a room filled with other waiting parents, and look around at their eager, anxious faces, I can't help but wonder just how different my wait feels, when it is cancer that has brought me to this place of anticipation and uncertainty.
Emily Beck is a cancer blogger (seeemilyplay.net) and child welfare attorney in Philadelphia. She lives in South Jersey with her husband, basset hound and two cats. When she is not writing about cancer, is she running, biking, praciticing yoga or singing.
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BY GUEST BLOGGER | JUNE 29, 2011
I am a young adult cancer survivor.
We are the ones whose doctors are surprised by our diagnoses. We are told, "Don't worry, it's probably nothing." We are told, "You are too young to get cancer."
You are never too young to get cancer.
I thought cancer was an old person's disease. I didn't know anyone my age that had had cancer--until I was diagnosed with breast cancer at age 37.
I knew I needed an outlet for my emotions, so I went to group therapy. But I just couldn't relate to the older people in the group. Their concerns revolved around things like being able to see their grandchildren and if their kids would be able to take care of them.
Young adult cancer survivors are unique. We have issues other survivors don't: Will I ever get used to these scars? How will sex be after cancer? Will I be able to have children? Will I be able to finish high school or college? How do I broach the subject of being a cancer survivor to someone I just started dating?
These aren't exactly the topics the over-50 crowd was discussing in therapy.
I found the I'm Too Young for This! Cancer Foundation (i[2]y) in 2007, the year I was diagnosed, and it's become the best resource I have found for young adult cancer survivors. I was fortunate to attend i[2]y's fourth annual OMG! Cancer Summit for Young Adults in NYC this past April. I had wanted to attend one of their conferences ever since I was diagnosed, and now I had the chance.
I had no idea what to expect. I really wanted to meet the friends I had met online who were attending, and I hoped to gain knowledge from the workshops, but what I got was so much more.
I was in a room filled with my peers. People who were exactly like me. Cancer type was irrelevant. We all had the same hopes, fears and side effect issues associated with cancer. It was amazing to be able to talk with someone and not have to explain why having a port scar bothers you or describe chemobrain when you can't find the right words.
The conference only lasted two days, but made a lasting impression on me. The 2012 OMG! conference is scheduled for Las Vegas. Vegas will never be the same. Here we come... http://omgsummit.org/2012/
Mel Majoros is a breast cancer survivor and host of "The Cancer Warrior" podcast on Empower Radio. You can read her blog "The Cancer Warrior" at thecancerwarrior.blogspot.com.
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BY GUEST BLOGGER | JUNE 28, 2011
I had cancer. There. I said it.
It's only three words, but telling friends or new acquaintances that I'm a cancer survivor can be difficult. Somehow the topic arises--usually because someone's family member has been affected by some type of cancer. My heart begins to beat wildly, but I can't stop myself from exercising my intense desire to share common experiences. So I say it.
Eyebrows raise, eyes widen. I'm very familiar with this shocked and sometimes panicked expression. And then of course I have to explain.
I explain that when I was only two years old I was diagnosed with leukemia, more specifically acute lymphoblastic leukemia, and that I was enrolled in a randomly selected drug trial. I explain that I almost died, but that I unexpectedly went into remission at age five. I also explain that my sister, who is five years my junior, went through the same thing, only less severe.
"I don't remember anything," I hurriedly say as a sort of reassurance. And it's true. I don't remember the countless injections or the spinal taps or the incessant hospitalizations. I've managed to piece together my experience with cancer thanks to verbal memories from my father and my memories of my sister's experience with the same disease.
Although I regard my status as a cancer survivor like an invisible medal, a unique characteristic of mine, I often fail to realize that so many people tend to associate unfounded stigmas with cancer.
I'll receive responses like, "Are you OK now?" or "Did your hair fall out?" or even "Are you still being treated for it?" Yes, yes and no, for the record.
Sometimes I don't have the opportunity to explain, like at the dentist's office. A new dentist will see what I call my "mini tooth," which was stunted because of the chemotherapy. "I had cancer," I'll awkwardly and almost unintelligibly explain. Usually silence follows, and I'm unsure whether he or she understands.
I don't want to be characterized as "the girl who had cancer" because there are so many other things that define me. I'm a daughter, a sister, a friend, a student, a cook, a writer, a music lover and so many other things. My status as a cancer survivor is a part of me, but it's certainly not the most important part of me.
Yes, I had cancer. Now let's move on.
Rachel Post is a 21-year-old, magazine journalism student at the University of Missouri-Columbia and a proud leukemia survivor.
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BY GUEST BLOGGER | MARCH 7, 2011
CURE invited Marie Ennis-O'Connor, a breast cancer survivor from Ireland, to describe her experience at the Annual Conference for Young Women Affected by Breast Cancer, held Feb. 25-27 in Orlando.
Being diagnosed with breast cancer at any age is an overwhelming and frightening experience, but being diagnosed with breast cancer when you are a younger woman brings its own unique challenges.
Facing a cancer diagnosis and undergoing treatment at a time when a young woman is typically focused on establishing her career, studying, dating, getting married or starting a family affects her in a variety of psychosocial and practical ways. She may feel isolated and alone as she comes to terms with fertility issues, early menopause, changing body image, maintaining a career while undergoing treatment, insurance issues and financial concerns.
Now imagine a place where she can feel less alone, a place where she can share her story with other young women who understand, a place where she can empower herself with the latest information on treatment options and learn new ways to cope and move on with her life.
On the last weekend in February, at the Peabody Hotel in Orlando, that place became a reality for hundreds of young women living with breast cancer. We traveled from all across the U.S. (and some, like myself, from countries further afield) to gather for the 11th Annual Conference for Young Women Affected By Breast Cancer (C4YW). We came to hear stories of survival, to become better advocates for our communities, to arm ourselves with the latest scientific research and clinical care, to attend workshops on healthy living, well-being and spirituality and above all to network and reach out to women just like ourselves.
The meeting, which began as a collaboration between Living Beyond Breast Cancer (LBBC) and the Young Survival Coalition (YSC), welcomed Susan G. Komen for the Cure as a partner in 2008. Thanks to a generous scholarship program which provides grants to participants to attend the conference, I was able to be a part of this unique weekend of learning and networking.
C4YW is the only international conference for women who have been diagnosed with breast cancer before the age of 45. The mission of the conference is to motivate and lend support to women whose diagnosis has had an impact on their family, friends, partners and children in a way that isn't necessarily related to that of her counterpart who was diagnosed at an older age. The conference takes place over three stimulating days of workshops, plenary presentations and fun events. These social events help women gain a sense of unity as they realize that there is a network within their individual breast cancer journey.
The weekend got off to a great start on Friday afternoon with workshops covering the mind/body connection and breast cancer and the environment. Throughout the weekend, attendees had the opportunity to participate in a variety of workshops designed to promote participants' understanding of the physical, social, emotional and spiritual aspects of life with breast cancer. Some of the topics are repeated each year – healthy living, fertility, reconstruction, intimacy and sexuality being among the most popular, and new topics for this year's conference included advocacy and inclusion, survivorship care plans and creating a legacy in letters.
The atmosphere on Saturday morning in the large conference room was electric as attendees gathered for the annual medical update for young women. The room buzzed with a palpable energy of enthusiasm, connection and support. For first-time attendees this can be an overwhelming and deeply moving experience as they feel a strong sense of being united in a common bond with women from all over the world.
This was my second time attending C4YW, and I still got chills when women stood up in the room to convey where they were on their breast cancer journey. One of the features of C4YW is wearing a colored lei to represent where you are on your breast cancer journey and looking around the room to see those wearing the lei representing over five years of survivorship is hugely encouraging. As breast cancer survivor Olade Olayinka said when sharing her story with us, it was the point at which she realized that survivorship was a real possibility past two, three, five and more years that her entire perspective changed.
We settled back in our seats for the opening plenary session with Ann Partridge, MD, a leading researcher on breast cancer in younger women, and founder and director of the Program for Young Women with Breast Cancer at Dana-Farber Cancer Institute. Dr Partridge provided us with a comprehensive update on the latest breast cancer research, commenting that the biggest strides have been made in the area of targeted treatment. Breast cancer is no longer treated as a single disease and the opportunity to individualize and target treatment is the direction research is moving toward.
Dr Partridge also spoke of advances in the treatment of a particular subgroup of cancer - triple-negative breast cancer (TNBC). TNBC was well represented throughout the weekend, with an excellent workshop presented by Edith Mitchell, MD, of the Kimmel Cancer Center in Philadelphia and more information and support available at the TNBC stand in the exhibition hall.
Indeed there was plenty to be learned from by visiting the exhibition hall, with more than 80 exhibitors representing support groups, apparel and organizations dedicated to young women with breast cancer.
It meant a lot to me to be able to connect face to face with many of these exhibitors from whom I have been sourcing information online since the early days of my diagnosis - particularly CURE, Dr. Susan Love Research Foundation and LIVESTRONG groups. It was also wonderful to meet new exhibitors I had no prior knowledge of, and I really valued the opportunity to be able to chat with them, learn more about their work and what they do to support younger women.
In Ireland we are sadly under-served with support groups and information in this area, so the information and fresh ideas I came away with will be put to good use in my own advocacy work.
All too soon the weekend ended, and I had a few days to unwind with friends in sunny Orlando before heading back home. As I settled into my flight back to Ireland, I reflected on what I was taking home with me from this experience. Armed with the latest medical and scientific research, new contacts made among exhibitors and attendees and stories shared by inspirational young survivors, C4YW has empowered me to be a more powerful and purposeful advocate for younger women with breast cancer in my own community. It has also given me renewed strength and knowledge to navigate my own journey beyond breast cancer. Best of all, I know that I am not alone. I am part of a sisterhood of survivors that spans a broad spectrum of nationality, race and creed. I am reminded of the words of the Nobel Peace Prize winner and philosopher, Albert Schweitzer, paraphrased below:
"Whoever among us has learned through personal experience what pain and anxiety really are must help to ensure that those out there who are in need obtain the same help that once came to (her). (She) no longer belongs to (herself) alone; (she) has become the (sister) of all who suffer."
I feel honored to have been part of the C4YW experience and proud to be among this sisterhood of survivors. Thanks to the organizers for the opportunity to be part of this unique event. I am already looking forward to C4YW 2012!
Marie Ennis-O'Connor was 35 years old when she was diagnosed with breast cancer in September 2004 and was treated with surgery, chemotherapy, radiotherapy, brachytherapy and hormone therapy. Marie has since become a passionate advocate for the issues facing younger women with breast cancer. She is secretary of Europa Donna Ireland, a patient advocacy group, whose mission is to bring the voice of the woman with experience of breast cancer to raising awareness of the need for screening and access for all women to cancer centers of excellence and to campaign for evidence-based, best practice health policy changes to ensure this happens. Marie is author of a patient information guide Younger Women, Breast Cancer and Fertility, and is editor of the award-winning blog, Journeying Beyond Breast Cancer. Marie lives in Co Clare, Ireland, with her husband Billy.
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