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BY KATHERINE LAGOMARSINO | MAY 18, 2012
I cover CURE's childhood cancer beat. It's a topic I've been interested in since volunteering in the local children's hospital playrooms, some of which are located in the cancer wing . I also happen to know and adore numerous children who are a result of fertility treatments. So when news items began popping up recently stating that children born as a result of fertility drugs were twice as likely to develop acute lymphoblastic leukemia (ALL), the most common form of childhood cancer, I tuned in for reasons both personal and professional.
After initially reading various news organizations' interpretations of that study, and not the actual study itself, it was impossible to determine how serious a threat these fertility drugs really were, which fertility drugs were potentially problematic or if any were even harmful at all. Some media outlets went for the attention-grabbing headlines: "Fertility Drugs More than Double Childhood Cancer Risk, Scientists Say"; "Common IVF Fertility Drugs 'Increase Childhood Leukemia Risk'"; "IVF drugs linked to childhood cancer." It makes you wonder how many parents of children conceived with the help of fertility drugs panicked when they saw those headlines.
The actual study, however, is far less conclusive than those headlines suggest. True, French researchers found an association between ovulation-stimulating drugs and childhood cancer, but there was also an association between childhood cancer and couples who took longer than a year to conceive naturally. And, to be clear, association is not synonymous with causation. And the term link cannot be interchanged with cause. The lead researcher admitted further study was needed.
In other words, fertility drugs may or may not increase the risk of childhood cancer. This is not as bold of a statement, but certainly a more accurate one.
Studies that are not quite ready for prime-time come out every day, and sometimes the media picks up them. Indeed, some studies are more interesting than others, and what a thrill as a journalist to report on brand new findings. But if those findings aren't given proper context, the potential for causing unnecessary stress and worry among an audience that probably already has its fair share of both is high. Perhaps we as journalists need to be more generous with our use of the word "may" in our headlines.
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BY LINDSAY RAY | MAY 10, 2012
Yesterday, I came across a video making its way around the Internet. It made me smile (and made me a bit misty eyed). And because these kids, young adults, nurses and parents are better at sharing their message than I ever could be, check out their inspiring video below.
22-year-old leukemia patient Chris Rumble (he's in an orange shirt in the video) decided to use his film talents to make a music video of Kelly Clarkson's "Stronger" featuring his fellow patients, families and staff on the hematology/oncology floor at Seattle Children's Hospital. Rumble is an artist-in-residence- at Seattle Children's as part of LIVESTRONG's Community Impact Project.
What started as a project to cheer people up has now become a viral sensation. And Clarkson even tweeted about it saying, "Oh my goodness y'all have to see this! It's beautiful! I can't wait to visit these kids and nurses!" I agree with Kelly; it's definitely a beautiful video.
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BY LINDSAY RAY | APRIL 1, 2012
Today was the last day of the OMG! Summit, and although I was tired (as were many others who got to enjoy the fun of Vegas), I was a little sad to see it end. But before the ending ceremonies, patients and survivors got another chance to open up to each other and share their hard-earned wisdom. Such nuggets of advice included, "coping with fear [of recurrence] is a muscle, but it gets stronger" and that sometimes patients need to learn how to be "care-receivers" just like the people in their lives learn how to be caregivers. And sometimes patients have to let the caregivers in their lives still fulfill the role in patients' lives they had before cancer--be it spouse, parent, sibling or friend.
And I know that I'm boiling down some of the complex issues that were talked about (and perhaps doing it much less eloquently than the speakers), but the beauty of a conference like this is everyone can carry the lessons they learned and the connections they made with them. And it doesn't really end here. Perhaps it's kind of perfect that OMG! ended at the beginning of the national young adult cancer awareness week. And this year marks the tenth anniversary of this special week (which is always the first week of April). So as one event in the young adult cancer movement ends, another begins, and the momentum keeps building.
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BY LINDSAY RAY | MARCH 31, 2012
Today I learned that around 72,000 young adults are diagnosed with cancer each year. That's around one young adult diagnosed every eight minutes. These are stats I didn't know before, and I imagine many of those outside the young adult cancer movement don't know either.
But what I found most fascinating is the progress the movement has made even in the last 20 years. Now, there's the LIVESTRONG Young Adult Alliance, the American Society of Clinical Ongology's "Focus under 40," many AYA-focused organizations springing up, growth of AYA-specific clinics (there are an estimated 18 in the U.S.), a new journal and society for AYA oncology and, most recently, the National Comprehensive Cancer Network released physician guidelines for adolescents and young adults.
Part of these great advances for the movement is an increased visibility, not only in the cancer sphere but also with the general public. Will Reiser, screenwriter of 50/50 and a young adult cancer survivor himself, spoke to the gathered patients, survivors, caregivers and advocates. He said that when they started production on the movie, they were worried that the irreverent humor in the film would offend people and cancer organizations might not like it. Instead, he's here in Vegas talking to hundreds of people who can relate to the experiences he put on the screen. He said he went through a lot of the issues he put on the screen in different ways and that because he was an expert on a topic that no one around him really was, he was able to uniquely share that, especially conveying young adult cancer patients isolation. And even though cancer is such a personal illness, he's been able to connect with several people who also had similar experiences.
And what's even more exciting is that everyone here is embracing the growing momentum of the movement. The theme of the conference is about sharing and learning from each other and looking forward so that future young adult cancer patients have a better experience--both medically and psychosocially. With the new NCCN guidelines for physicians out now, guidelines for patients will follow within the year, so young adult patients can know what questions to ask their physicians. I got the chance to talk with Brad Zebrack, PhD, himself a young adult cancer survivor and now a researcher into young adult cancer topics. As part of his next research project, he wants to ask young adult cancer survivors what would be the optimal system of care and what programs they would like to have in place. He wants to then take the voices of the survivors to the people in charge of making decisions--to add in a voice that's been missing.
It's interesting to see how young adult cancer advocacy has grown, but it's exciting to see how it's still growing and where advocacy is going. What aspect of the young adult cancer movement are you excited for?
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BY LINDSAY RAY | MARCH 30, 2012
I'm excited to be here in Las Vegas to cover the OMG! Summit for CURE. Not only is this my first time to cover a conference for the magazine, but it also cuts to the heart of why I got into journalism: meeting people and learning their stories.
Today, I got to meet young people still in treatment, people years out from treatment, old friends of CURE, lots of new faces and people I've only communicated with via email, like Emily who just wrote a guest blog for us. And everyone's excited to meet everyone else.
I got the pleasure of getting to talk to Christina. It's her first time attending the conference as well. She was diagnosed with ovarian cancer just after her 39th birthday and has been in treatment since. She said when she went to her local Gilda's Club and tried to meet people with a similar diagnosis, she found they were at a different stage at life. They wanted to see their grandchildren graduate while she just wanted to see her daughter through first grade. But she found people to connect with in I'm Too Young For This! Cancer Foundation and said that she feels like it's a "we" now.
And that's what's really great about this weekend--the feeling of camaraderie. I can't wait to meet more people and hear more stories.
Is there anything you want to know from the attendees?
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BY KATHERINE LAGOMARSINO | MARCH 29, 2012
Following an intense Facebook campaign encouraging Mattel to produce a Barbie specifically for young female patients suffering from hair loss, the toy company plans to unveil a bald Barbie, complete with scarves, wigs, hats and other accessories. The group of women behind the campaign, which now has more than 150,000 "likes," either had children suffering, or were themselves experiencing, baldness because of cancer treatments or other illnesses. The Barbie is designed to help young girls cope with the side effects of chemotherapy or alopecia areata, an autoimmune disease, both of which can cause hair to fall out. But don't expect to see these bold, bald beauties on store shelves. Mattel, working through the Children's Hospital Association, the Children's Cancer Foundation and the National Alopecia Areata Foundation, will be giving them directly to young patients suffering from hair loss. Kudos to the ladies behind the bald Barbie movement and to Mattel for responding to the needs of young cancer patients.
If you could suggest any doll or toy (iconic or otherwise) to be treated in a similar manner, what would it be?
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BY ELIZABETH WHITTINGTON | MARCH 23, 2012
First Descents is a non-profit organization that provides free outdoor adventure therapy for young adults with cancer. The program is designed to "empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same."
The outdoor programs last anywhere between a day and a week and accepts young adults with cancer, regardless of physical challenges, cancer type or prognosis. Not only does the program help survivors regain self confidence and empowerment, but creates a special bond with other young adult survivors. (Our latest guest blogger can't wait to reconnect with her kayaking group this year in "Celebrate Good Times".)
The group has exciting news for the upcoming programs, including adding more than 10 new locations for this year.
To accommodate the new and existing programs, First Descents is seeking medical volunteers to help care for participants, including physicians, nurses, physician assistants and nurse practitioners. (Volunteers need not be skilled in kayaking or surfing, if you're worried about that qualification!) However, each volunteer should have a valid and current license in the program's state (the organization is based in Colorado, but there will be programs across the country). Applicants will need to commit to the entire duration of the program.
Individuals interested in donating their time as a medical volunteer or another volunteer position at camp should visit http://firstdescents.org/volunteer-2 for more information and an online application.
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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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