Today, the exact details are fuzzy, but the feeling remains. My father, aka Big Daddy Kane, hit me with a ton of bricks. After noticing a change, followed by a medical exam, followed by more exams, he learned he had testicular cancer. This was my first bout with cancer. As his primary caregiver, I feel entitled to own a piece of it.

I had worked as a pharmacy technician since the age of 15. I knew about cancer and treatment and loss. I became increasingly aware of that last bit, having seen customers in my little mom and pop store come and go. I accepted it as part of growing up, and it taught me a lot. For years, I considered becoming a pharmacist, and being a cog in the healthcare machine. But after I realized I was neither mathematician nor scientist, the dream faded.

Dad had his surgery, rounds of chemo, and more surgeries, and ultimately walked out of the hospital for good. He was in remission. Or was he cured? What did these words mean, anyway?

Fast-forward a few years of community college and state school to a 5-year “super senior.” I took a random elective focused on writing grants. Through a serendipitous friendship between my teacher and a young adult cancer survivor, Cyndy S., I learned one evening about what a 501(c)(3) was. I was introduced to the I’m Too Young For This! Cancer Foundation. Knowing I had to complete a 90-hour internship to graduate, I immediately went on the website and was called out by my professor for being disrespectful to the speaker.

It was a holy shit moment. I was thrust into this sub-culture of a forgotten population of cancer survivors. Sure, I knew about bald children and grandmothers with breast cancer, but this was all new to me. I was also introduced to the sardonic wit of Matthew Zachary. The enemy was anyone who didn’t “get it,” and their name was “douchebag.” On September 21, 2009, I sent in my resume to the man behind the curtain, MZ.

My first in-person meeting was in a conference room in midtown. I was in a room full of cancer survivors, volunteering for an organization that seemed like a tech company in disguise. My second trip to my new internship in NYC was quite different. I got to the office on time and was met by a unique individual name Chad Whitman. I say unique with love, because anyone who met him knew right away that he was special. He was dancing to techno music while bundling hospital literature. He greeted me with “hey cutie,” and I told him I was looking for Matthew Zachary, who had stepped out moments earlier. I had no idea what I was in store for.

After a few months, my 90-hour internship turned into a 300-hour internship, then a part-time job, and ultimately a full-time job. I quit my pharmacy tech gig after 8 years of counting pills and a suddenly useless knowledge of brand and generic drugs. May 2010 was a great month. Dad was doing well after being diagnosed 5 years earlier, I was graduating, and I had a job.

I titled this piece 2 years of Stupid Cancer, but in reality it has been 32 months. A lot has happened. I’ve met scores of incredible people, some cancer survivors, some caregivers like myself, and others who are passionate advocates. I’ve lost some of the friends I made, a reminder of why we go to work every day, and why it’s so important to continue what we’re doing.

I recently had the opportunity to travel from one coast to the other in a Volkswagen Beetle, making house calls to some of our most active cities. Aside from seeing how incredible our country is, I was exposed to some incredible people. Cancer survivors are a different breed and some of the best people I’ve known.

I wish there wasn’t a need for my job, but at the same time, I couldn’t picture doing anything else.

In the towns and cities and cancer centers we had come from, we were the oddballs—younger than other survivors by decades yet older than our peers because of painful life experience. But here at the OMG Cancer Summit for Young Adults, we had found our people. We were surrounded by others who understood exactly what it means to be hijacked by cancer in your 20s and 30s.

This is the power of Stupidcancer.org. Whether you went to the summit in Las Vegas or you stay connected online, you are part of something. You are part of a movement dedicated to making life better for young adult cancer survivors. And here’s something we can all be proud of: our movement is making concrete, tangible progress.

OMG reception at Moon

Sometimes that progress includes throwing a really good party. When you spend your days facing cancer treatment or dealing with its aftermath, you deserve a chance to blow off steam every once in awhile.

The OMG Summit organizers know the value of fun. Whether it was dancing in a gorgeous penthouse bar or laughing at professional comedians who happened to be cancer survivors or snapping photos of Chippendale dancers who stopped by the Testicular Cancer Awareness Foundation exhibit, the summit showed us a good time.

But it wasn’t all fun and games. The conference was also packed with panels designed to help us cope with cancer and its fallout. I had the honor of speaking on two panels, but I also had the chance to learn from other speakers and participants.

A group of skilled survivors and sex therapists led a great conversation about body image, loss of desire, and the pain of rejection. A panel of parents urged survivors to stop feeling guilty because caregivers support us for the simple reason that they love us. These are just a few of the amazing panels; keep checking the OMG site for videos of all the great talks.

In the end, it was the plenary sessions that really illustrated the progress of this movement. For decades, young adult cancer survivors have been largely invisible the field of oncology and that costs us dearly: Our diagnoses come too late, our survival rates have barely changed, and our unique physical and emotional needs are often overlooked.

But thanks to advocates like OMG Summit Founder Matthew Zachary and visionary oncologists like Dr. Leonard Sender, young survivors are becoming more and more visible.

Stupidcancer.org Founder Matt Zachary packs the Pearl Theater

Now the Stupid Cancer Show has 1.6 million listens and Stupidcancer.org has 500,000 friends across social media. The Livestrong Young Adult Alliance works with clinics around the nation to provide dedicated services for young survivors. The National Comprehensive Cancer Network just issued new Clinical Practice Guidelines in Oncology for Adolescent and Young Adult Oncology, which will help set the standard for how oncologists care for young survivors. And researchers like Dr Sender and OMG speakers Dr. Brad Zebrack and Dr. Barbara Jones are generating more data about what works and what doesn’t work for young survivors.

Let’s be clear. This progress occurred because advocates demanded it. Young survivors and our supporters raised our voices and said the situation has to change. Our survival rates must improve and our emotional isolation must end.

We need to keep the pressure on. We can ask our oncologists what they are doing for young survivors, challenge our cancer center to offer more fertility options, or organize a Stupidcancer.org happy hour.

If we all keep raising our voices, then the next round of young people who get diagnosed with cancer will know they are part of a kick-ass movement that gets shit done and throws great parties.

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.

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?

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.

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?

In this day and age, if you do not automatically assume that recruiters, admissions officers, and human resource managers are going to firebomb the Web for your social media footprint, then you deserve all of the FB comments littering that photo of you planking on a beer pong table.

Considering FB changes it’s privacy settings on an hourly basis, there is no guarantee that the video of your absinthe-induced Justin Bieber karaoke #epicfail will be publicly viewable or just limited to your specified inner circle of friends.

“But wait!,” you say. “I have two email addresses. One for FB and one for business! They’ll never be able to find me. Alsom my LinkedIn profile will protect me and give off the impression that I am an inherently upstanding citizen and generally nice person.”

Lest ye forget, my grasshopper snowflake, that social media has the word “social” in it. Therefore, it would be categorically unwise to assume anything nor underestimate the power of the dark side of the Interweb. After all, you never truly know who knows who and, by proxy, who knows your past. Gone are the days of Kevin Bacon separation. It’s one degree of you.

Besides, your LinkedIn profile may intentionally or unintentionally connect to your FB profile, Twitter feed, Tumblr or Blog – all footprints of your online social identity which can – and will – give prospects the Scooby Doo clues they need to discover the aforementioned “Bieber incident”, thereby potentially wiping out any chance you have of matriculation or employment.

In fact, it doesn’t have to be work or school. It could be a date, a business meeting, holidays with the family or even securing a loan. Everything you post online is global public knowledge, whether you want it to be or not.

No matter how hard you may try, something will eventually give probably due to no fault of your own. Subsequently, the world won’t be your oyster, the world will see your oyster. Awkward.

Notice, I haven’t even mentioned the word “cancer” yet. What is stated above serves, I hope, as common sense practical advice to the general counsel. Toss any chronic or debiliatating disease on top of these already complex cultural understandings, and you are potentially opening up a whole new can of ignorance-based stigma, social injustice and downright stupidity.

The very meaning of the word “privacy” changes in an instant when you are facing a life-altering, or potentially catastrophic, medical condition that threatens to uproot your life. Economic, physical, career and spiritual issues notwithstanding, the social implications of these circumstances are what will most likely be the most stressful to deal with.

This is where the fine lines of social media, personal privacy and one’s own need for peer support will intersect. Just when you’re at a time in your life when the need for self-expression and a steam valve release is most important, you’re potentially confined in how you wish to say what you need to because your oyster may be on display.

You are the star of your own reality show and the camera watching your every action is social media. Your privacy is in the eye of the beholder and only you can choose what makes the most sense for you. Should you create a custom “list” in FB just for people who you’d like to vent to? If you stop posting altogether, people will get suspicious. How can you possibly manage the emotions of wanting to hate the world, love youself and still “like” Glee on your wall?

What’s worse? Losing FB friends or losing real friends? Do the practical uses of social media outweigh the cons? These – and scores of other similar curiosities – pervade our society and represent life in the 21st century.

There is no one answer for any one person. The art of your survivorship is how you choose to get busy living. Expressing yourself through that vein is an individualized choice. Arm yourself with knowledge, surround yourself with peers and absorb as much credible insight as possible before making as objective a decision as you can when sharing your story with the entire world via one mouse click. The world is literally your oyster.

Matthew Zachary is a 16-year survivor of pediatric brain cancer and the Founder/CEO at Stupid Cancer, the nation’s largest support community for young adults affected by cancer.

———————————-

So what’s your story? Did you “come out” via social media? Were you already out of the woods or living with chronic cancer when FB hit the world? Was it a mistake or an asset to go public? Or do you live in fear of ramifications should you share your story publicly? Post your comments at The Stupid Cancer Blog, http://stupidcancerblog.com.

I will tell you that 2012 is already shaping up to be an extraordinary year for the young adult cancer movement. We will reach more people. We will impact more lives. We will empower and mobilize even more people than ever before.

Between the 5th Annual OMG! Cancer Summit for Young Adults this March in Vegas, the launch of Season 10 of The Stupid Cancer Show on 1/16 and some groundbreaking new survivorship research you’ll be hearing about this Spring, we’ve never been more optimistic and inspired to continue innovating and pushing the needle forward.

On behalf of our Board, staff and legions of exceptional volunteers, we wish each and every one of you peace, healthy, happiness, prosperity and joy for the new year.

Thank you for your support, commitment and belief in our organization.

–
Matthew Zachary
16-Year Young Adult Survivor
Founder/CEO
I’m Too Young For This! Cancer Foundation

 
Please consider a last-minute, year-end, tax-deductible
gift of $10 or $20 to the foundation. Thank you.

 

That doesn’t mean we don’t have our share of bitter resentment as well. Young survivors are painfully aware of how much we have lost to cancer—breasts, testicles, colons, fertility, friends, the youthful confidence that everything will work out alright. These are hard pills to swallow, especially when you are in your twenties or thirties and your disease-free friends don’t understand.

Yet alongside the grief and loss, we can’t help but feel thankful.

In the immediate aftermath of treatment, we appreciate even the most ordinary moments. Denny was 28 when he got diagnosed with nasal cancer. His 35 doses of radiation, brutal rounds of chemo, and extensive mouth sores made it impossible for him to eat, so his doctors attached a g-tube to his abdomen. He said:

When I took my first shower after I got the appendages taken out, I cried for 20 minutes. I am a shower guy. When I was ill for nine months, it was squatting in the tub. When I take a shower, I feel liberated. I am reminded it is a luxury. Washing my hair is one of the most joyous things I do, because it is a luxury to have hair.

After you have been bald and vomiting and fearing death for months, you become remarkably easy to please. But there is wisdom in savoring simple pleasures.

Over coffee one day, a fellow breast cancer survivor told me, “I was walking up the stairs from the subway the other day, and this breeze started blowing, and it blew my shirt against my skin in this way that made me stop and think, ‘This is what it means to be alive.’”

I’ve often had those realizations since my diagnosis. Sometimes when I am floating on my back in the ocean or resting against a redrock canyon wall, I am struck by how lucky I am to be living through such moments. I have seen the alternative. I know I could just as easily be in a chemo chair, fighting off an infection in a hospital bed, or facing death. But instead I get to feel the sun on my face and hear my family’s laughter.

The list of things to be thankful for is long. I am grateful that my cancer did not recur, that my husband was an incredible support during our ordeal, that I was able to have my daughter even after chemo. I have many gifts in my life, and I appreciate each one of them. But there is something about the simple moments and the small luxuries that bring the gratitude home.

At dinner tables across the nation this week, people will raise their glasses and say they are thankful for their health. I am sure they will mean it, but we cancer survivors know its true value. And we know that sitting through another Thanksgiving meal is reward in itself.

Cancer survivors know life can be stolen away at any moment. We have earned our gratitude. We may as well enjoy it.

One survivor of testicular cancer explained, “Since my diagnosis, I am able to put things in perspective. If I have a bad day at work, my kid is screaming, my house is a disaster. Well you know, fuck it! I am alive! I appreciate the time I have.”