Dating after Cancer: Young Survivors May Be Our Own Worst Enemies


Valentine’s Day is approaching, and images of red roses, candlelit dinners, and dark chocolates are blossoming all over television and magazines. It’s easy to get swept up in the mood, except maybe for those young cancer survivors out there who are thinking: what’s so romantic about five-inch surgery scars and a preoccupation with death?

Dating is never easy, but it is especially hard for people who have gone through cancer. Now in addition to avoiding the ordinary social pitfalls, you also have to navigate a new minefield.

When do you first mention the c-word—while you’re flirting at the bar or after your fifth date? If you do hook up, how do you prepare your partner for altered body parts? One survivor of testicular cancer put it bluntly: “How do you tell a girl that you only have one ball?” Worst of all: what if you do share your medical history and the person walks away?

There is no denying it. There are people out there who won’t be able to deal with your cancer experience, and they could break your heart.

But here is another powerful truth: oncology social workers who run dating workshops have noticed that it’s often the cancer survivor who cuts things off first. Many survivors anticipate rejection and push new partners away to protect themselves.

Several young survivors I know have gone that route. Mina, who had just finished law school when she got diagnosed with breast cancer at 27, didn’t date during treatment. A few months out, she met a guy at a bar, and after a few dates, she told him about her cancer experience. He took the news well, she said, but then she added, “I didn’t tell him I had a bilateral mastectomy, because I didn’t want to sound like even more of a freak show.” She never gave him the chance to reject her; she dumped him before they got to the bedroom.

Young adult survivors are even more likely to expect rejection than older survivors. Why? Because we think we are flawed in ways that most of our peers are not. “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 Page Tolbert, an oncology social worker at the Post Treatment Center of Memorial Sloan Kettering. “In middle 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. You feel vulnerable, because who’s going to want what you have to offer when other people’s package is fuller?”

We experience that sense of damage in insidious ways. Some of us think that a person we are flirting with will lose interest as soon as they find out about the illness. Some feel more self conscious about being naked in front of a new lover. Some feel a tinge of shame, as if cancer reflects a hidden defect. None of these feelings bolster our belief in our desirability. After all, of all various traits that can make a person sexy and attractive to a prospective lover, cancer is not one of them, right?

But according to Tolbert, young survivors make a lot of assumptions about what potential mates will think about our cancer experience, and many of those assumptions turn out to be wrong. She remembers one kind, compassionate young guy who came to her support group on dating. One day he said, “I shouldn’t even be here, because the surgery I had left me impotent, and I know that if you can’t perform the basic sex act, a woman’s not going to want to go out with you.”

Right away the group shouted out a chorus of “Wrong!” They said, “You are the kind of guy we are looking for!” One woman said, “Is it a problem that you can’t have intercourse the normal way? Yeah, you’d have to figure other stuff out, but you are making an assumption about what women want.” Another woman said, “It is number three on my list of things that I look for in a man. It’s behind ‘loves me’ and ‘treats me well.’” Then another replied, “Are you kidding? It’s behind ‘has a sense of humor.”

Cancer does not spell the end of romantic love. It may mean we have to take a few more risks and expose ourselves more, but there is no reason to give up hope or to hold ourselves on the sidelines. After all, survivors know how to handle risk and fear.

I talked to one young guy who was about to move from Los Angeles to London to be with a man he had met after going through a brutal round of treatment for nasal cancer. The relationship was still new, but he had a good feeling about it. “I am doing this because I don’t want to find out the cancer is back and I didn’t do anything. I am risking having my heart broken, but it can’t be worse than dying.”

Emily Cousins

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

So I suffered a stroke… Seriously, I had a stroke. At 36 years old. All thanks to stupid cancer. [read on]

So I suffered a stroke… Seriously, I had a stroke. At 36 years old. All thanks to stupid cancer. [read on]


The Short Story

I suffered a mini stroke (TIA) this week as a long-term side effect of the radiation I received for brain cancer in 1996. (Stupid cancer.) I am fine right now, recovering and will be getting a battery of tests at the NYU Stroke Center next week. I have fortunately not lost any cognition or motor coordination. I have a slight speech impediment which should be self correcting and my overall health is just fine. I’m home with my wife and children and laying low for a while.

The Long Story

On January 23rd, I awoke with a mild speech impediment and within two days noticed that symptoms had not improved AND I was having trouble touch typing. On January 26th, I asked my staff if they had noticed a change and they all confirmed my worst fears – something neurological was impacting my daily functionality.

A call to my oncologist resulted in a fast track insurance pre-certification for an MRI on January 30. The preliminary radiology report indicated a new tumor on my brain stem, the pons, specifically. An emergency visit to my neuro-oncologist on Monday the 31st confirmed the structure, however the nature of my symptoms didn’t seem to add up to the suggested prognosis.

It is now the general consensus that I did NOT have a brain stem glioma and that the radiologist who originally read the MRI scans was untrained in neuro-radiology. However, with this relief, I had a different set of challenges to deal with – I didn’t have cancer. I had suffered a stroke, also known as a transient ischemic attack or TIA; a known side-effect of brain radiation.

My body is on the path to healing and recovering. Next week, I am going for a battery of tests at NYU on track to enter their Comprehensive Stroke Care Center for observation, evaluation and further monitoring. Seeing as how my TIA was not caused by traditional risk factors, it remains uncertain what direction the NYU team will recommend but I plan on adding this to the list of issues I get monitored for each year.

This is my fourth brain cancer scare over the past 15 years. In 2003 I began to experience bilateral ocular migraines which blurred my vision and in 2004 I contracted ocular shingles. No tumor. Then in both 2007 and 2009 I went spontaneously deaf in my left and right ears, respectively. (High dose prednisone fully restored my hearing three months later) No tumor. I’ve also had a lung cancer scare which turned out to he pleurisy and a testicular cancer scare which turned out to be a hernia.

I’m still here and nothing is going to stop me from loving my wife and my children and being one of the most passionate cancer advocates in the country. I think the takeaway from this is that when the doctor says “You’re cured. Go home.”, that’s never the end of the story *especially* for pediatric, adolescent and young adults living, through and beyond cancer. I may still be disease free but I don’t feel “cured” as long as I – and millions others – continue to deal with the consequences of treatment. Surviving cancer comes at a price. With all these billions going to fund more and more mostly necessary cancer research, where is the money for cancer survivorship?

Let this be a call to action to start funding survivorship now. Go out there, raise awareness, raise your voice and raise hell. Fund survivorship now because remission is not a cure. Support the I’m Too Young For This! Cancer Foundation and our partner organizations in serving the survivorship needs of our generation.

I hope I am the only one around who can wear a t-shirt that proudly proclaims, “Thank God it was only a stroke.”

I am still here. You are still here.

This is why we fight.

Stupid cancer. Survivors rule.

MZ

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

Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.

Just When Young Adults Are Feeling Invincible, Cancer Sideswipes Us


The other day I was talking to a friend who is a few months into a rare form of cancer of the appendix. She was second guessing some of her treatment decisions. She wondered about her prognosis, since most of the relevant studies had been done on much older patients. And she desperately wanted to know if she would live to watch her two young daughters grow up. Finally she asked me point blank: “When does the uncertainty end?”

I didn’t have the heart to give her an honest answer: it can a long time.

This is one of the hardest truths about getting cancer. Few of us leave treatment with a certificate proclaiming “You Have Been Cured.” Our doctors rarely know if they have killed all the cancer cells yet. And so we begin the dreadful period of watchful waiting—when no one can tell us if we will survive the cancer or not. We just wait and see.

Having this cloud of uncertainty hanging over your head is difficult at any age, but it is especially hard on young adults.

Cancer enters our lives right when we feel most invincible. We can party all night. We can run marathons. We can power it out at work. We can recover fast when we stumble. And when we look into the future, we can see distant, unbroken horizons.

Cancer shatters that confidence.

First we lose our faith in our bodies. We thought we could count on them to do anything we wanted, but then we find out they betrayed us. One young survivor I spoke to said he felt perfectly healthy when he went for a routine physical before he and his wife started trying to conceive a baby. Three minutes into the exam, his doctor said, “You have a serious problem.” It turned out to be advanced testicular cancer. “You thought you were healthy, but then someone tells you, ‘No, you are very, very sick.’ Every pain, every twitch after that is terrifying.”

Next we lose our faith in the idea that everything will work out just fine. This is a hallmark of being young: we take risks and embrace adventure because we think we will come out ahead every time. Cancer brings no such assurances. Lisa, who was diagnosed with breast cancer at 33, told me, “I have lost the quiet confidence that nothing that bad will happen to me. Or if it does that I will always end up on my feet.”

Finally, we lose our faith in the future. In the first year after being diagnosed with breast cancer, I felt nearsighted when I looked at my life: I could see only a few months ahead, and beyond that everything was blurry. How could I book a major vacation when my next scan could put me back in the hospital? How could I change jobs when should have lots of sick leave stored in the bank? How could I move to a new city when I might need to spend my dying days close to my family?

Two years after treatment ended, my husband and I finally felt bold enough to try to have a second child. Yet even that decision was shaped by uncertainty. I had to ask him, “If the cancer comes back and I die, can you raise two children on your own?” Maybe every parent should ask that question, yet few do unless they have already confronted mortality.

Getting pregnant with my daughter was a turning point for me. Finally, my body was doing what it was supposed to do. I even had newfound admiration for what it could withstand: it weathered surgeries, extra doses of chemo, prolonged menopause, and still I could deliver a baby and nurse her on the side that hadn’t been radiated.

Each month that passed in which I got to watch my daughter grow and my cancer did not come back strengthened my confidence. Each screening that came back negative restored my faith. When my daughter was 18 months, I felt strong enough to move across the country, far from the mother ship of my cancer center—something I never would have dreamed of doing in the immediate aftermath of the diagnosis.

My long-distance vision has returned. Don’t get me wrong—I still panic before my mammograms and I still have tremendous gratitude for every birthday I celebrate. But I don’t feel as uncertain as I used to. I believe my friend who is dealing with appendix cancer will regain her own belief in the future. It will just take time.

It’s Not over When the Radiation Burns Heal


Last week’s installment of This American Life focused on people who take a long time. There was the guy who took 17 years to marry the love of his life.  There was the writer who waited since childhood to publish a certain story. And there was the author Katherine Russell Rich who has been living with stage IV breast cancer for 18 years.

I can’t pretend to know what it is like to have metastatic breast cancer, never mind what’s like to live 16 years longer than the oncologists expected. But I do know what it’s like to take a long time with something.

It has taken me a long time to recover from cancer.

I am not talking about healing from radiation or having my incision scar stop hurting (it never has). I am talking about coping with the emotional and existential fallout that comes from having a cancer bomb go off in your life.

That part takes a long time, but I didn’t know that when I got diagnosed with breast cancer at 32. My doctors warned me that chemotherapy and radiation would be miserable. But no one told me that adjusting to life after cancer would be just as hard.

In the first year after of treatment, cancer continued to infiltrate my life. I remained in chemo-induced menopause for months. I sat in my office wondering why I left my baby at home when I might not live to see him enter kindergarten. I watched friends plan second pregnancies and career moves, and I felt adrift. I couldn’t plan past my next cancer screening.

I tried to share some of my fears with friends, but even the most well-meaning were perplexed by the persistence of my worries. They would have known how to counsel me through divorce or infertility, but cancer wasn’t on their radar yet. I felt kind but gentle pressure to move on. It was as if there were a shelf life on my cancer experience, and it was fast approaching expiration.

So I did what every young survivor yearns to do: I found other people who get it. I sought out lectures and workshops designed for people my age, and it was a revelation.

I heard Page Tolbert, a social worker at the Post Treatment Resource Program at Memorial Sloan Kettering, explain: “People think of getting a cancer diagnosis as a crisis. Sometimes the treatment itself is a crisis. But people don’t often acknowledge that the end of treatment can be a crisis as well.”

This is especially true for young survivors. Oncology social workers who treat us have identified a common theme: young people tend to summon all our strength to sprint through treatment. We are in such a hurry to regain our “normal” lives as soon as the radiation burns heal that we are caught off guard by the intensity of emotions that hit us as soon as we slow down.

One of the young survivors I spoke to said that even though he went through a brutal regime of chemo and radiation for nasopharyngeal cancer at the age of 28, he still thought the first year out was worse than treatment itself.

“When I got my scan and I was clean, it was the happiest day of my life, but it was horrible, devastating. People don’t understand that. It was a huge letdown. Everybody didn’t want to deal with it. The moment I was clean was an excuse not to talk about it. My soul still had cancer, and I wasn’t getting treatment for it.”

Young people’s skin and bones heal quickly, but it takes awhile for our souls to mend. It can take even longer if our loved ones don’t understand why we aren’t moving along faster.

That’s why I decided to write a book about life after cancer for young people. And that is what I will be blogging about a lot here: how cancer continues to shape our lives long after the port comes out, our hair grows back, and our friends think we are better.

There is no way to avoid the pain and confusion that descends at the end of treatment. Yet knowing you are not alone can help you cope. Almost all the survivors I have spoken to said the best remedy they found was connecting with other young survivors.

Because we understand that taking a few years to rebound from getting a life threatening illness in the midst of your youth isn’t so long after all.

Emily Cousins

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

Cancer as Romantic Comedy: The New Kate Hudson Movie


Last week the Weinstein Company released a trailer for the new Kate Hudson romantic comedy called A Little Bit of Heaven. According to IMBD, “It’s a comedy about a guarded woman who finds out she’s dying of cancer, but when she meets her match, the threat of falling in love is scarier than death.”

The film seems to have all the trappings of the genre: a successful career gal (who is probably also a klutz like so many of her celluloid sisters), a stylish wardrobe, a cluster of dedicated sidekicks, and a handsome love interest.

Into this sleek, Cosmo-sipping world stalks cancer. Only it’s not the cancer that most of us young survivors would recognize—the harrowing, painful, and heartbreaking kind. It’s cancer as plot device: the troublesome obstacle separating our plucky heroine from true love.

And did I mention her true love is also her oncologist? Talk about meeting cute.


Not everything about this movie puts me off. Considering that most people still believe cancer only happens to grandparents, I am always glad to see young survivors represented in movies and on TV.

I also admit to having a soft spot for romantic comedies. They provided a welcome distraction during my eight months of treatment for breast cancer. The complete works of Julia Roberts, Meg Ryan, and Sandra Bullock could be as mind-numbing as Ativan.

And I have no ethical problems with Kate Hudson’s character falling in love with her oncologist. Most survivors I know harbor very intense feelings about their doctors. I certainly loved my first oncologist. He was young and handsome and smart—and gay, which along with my being married, kept the boundaries very clear—and he happened to save my life. What I felt wasn’t romantic love, more like in-the-trenches love, but when he left the cancer center to return to school, it did feel like a break up.

It’s not the oncology love or even the lack of baldness that I object to in this film. It’s the breezy nature of everything. Hudson’s character casually tells her friends she has cancer in the middle of dinner. She has glib conversations with god, played by Whoopi Goldberg. She is a storehouse of one-liners.

All survivors turn cancer into a punch-line sometimes. We need gallows humor to help us deal with the shitty nature of the disease. But judging from the trailer, A Little Bit of Heaven doesn’t have the biting, clear-eyed wit that rings true. It’s has the Hollywood softball variety.

I fear the film will deal with mortality in the same cavalier, cancer-lite manner. It’s unclear from the trailer whether Hudson’s character dies or is given the clichéd “second change.” But it seems to treat facing death as a good way to deal with commitment issues.

I have interviewed scores of young survivors, and their experiences with mortality are far more profound than that. They talk about being unable to plan past the next scan, grieving lost opportunities, and feeling the dread of living an abbreviated life. “It is dying YOUNG that bothers most of us,” one sarcoma survivor told me. “At 24, I don’t even have a boyfriend. My job is sorting mail. I have accomplished nothing in life of any importance yet.”

This kind of unvarnished truth simply doesn’t fit within the confines of a romantic comedy. Still, I am not giving up hope that Hollywood can capture what it’s like to have cancer as a young person. Nor am I assuming that the Tears of Endearment versions are the only ones that get it right.

I am holding out faith that another upcoming comedy will strike the right note. Live with It, previously titled, I’m With Cancer, was written by Will Reiser of Da Ali G. Show and stars Seth Rogen, Joseph Gorden Leavitt, and Anna Kendrick. It’s about a 27-year-old guy who gets spinal cancer. The blurb says, “With the help of his best friend, his mother, and a young therapist at the cancer center, Adam learns what and who the most important things in his life are.”

Sounds like it promises sharper humor and a lot more soul than A Little Bit of Heaven can deliver. But let me know what you think. Do you think Hollywood can ever get cancer right?

Emily Cousins

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

The Cervix Song!


It’s National Cervical Cancer Awareness Month so I decided to write a song because I’m sick of bra colors and I don’t think panty colors would help much (at least not for the cause.)

The Cervix Song
Horrible lyrics by Matthew Zachary

——————

This is a song about the cer-vix.
It’s not for a he, it’s for a her-vix.
It’s a friend to your own body as it were-vix
But be aware that weird things can occur-vix.

This is a song about the cer-vix
Did you know that all viruses transfer-vix
Get the facts and don’t be too demur-vix
Cuz life can change forever in a blur-vix

This is a song about the cer-vix
There are bad things out there that you can defer-vix
Doctors are the folks you should confer-vix
So you become a health entrepreneur-vix

This is a song about the cer-vix
It’s not a rhyming tome about liqueur-vix
We want to know you get the right answer-vix
Cause being here is what we all prefer-vix

Get screened.
Get the facts.
Forgive me.

http://tamikaandfriends.org
http://stupidcancer.com

The Real "Death Panels"


The Real Death Panels

Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.

NPR Fresh Air: Young People Living And Laughing With Cancer


NPR Interview with i[2]y’ers Kairol Rosenthal, author of “Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s” and Iva Skotch. Click the title of this blog post to take a listen.

Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.

StandUp2[Stupid]Cancer!!!!


StandUp2[Stupid]Cancer!!!!
Changing The Dialogue About How To Change Cancer Research

For those who know me, it’s shouldn’t come as a surprise to learn I employ a low tolerance line for BS and live a guiding philosophy that tows a fragile line between “cautious optimism” and downright jaded cynicism.

For those who don’t know me, see above.

I am a disruptive and authority-questioning advocate for what I believe is right. I also try to stay objective to the conversation to deliver meaningful value to those willing to listen. So, when the other side of the coin is presented in a credible, legitimate and honest fashion, I’m unexpectedly pleased to rethink my opinions.

And StandUp2Cancer (SU2C) has done just that.

A little back-story…

SU2C was unveiled 18 months ago as “the beginning of the end of cancer.” A massive fundraiser telethon organized by some of the most influential women in Hollywood, it pledged to raise $100 Million for cancer research. I was cynical by default – if only due to my pre-existing disenfranchisement at the lack of recognition given to the young adult cancer community, a population within the continuum whose survival rates have not improved in 30 years. (Seeing as how the last 30 years of cancer ‘progress’ have failed the next generation of survivors, I had no reason to think the next 30 will be any different unless some kind of real change came along.)

Would SU2C be like the others; dismissive and uninterested in understanding the cause “cancer under 40″? Or, would they be open, receptive and willing to consider the possibility that actual progress and true innovation in cancer research involves an even split between “scientists in white lab coats” and “real world issues” such as medical education, access to quality care, age-appropriate peer support, insurance, fertility?

SU2C exceeded their fundraising goals during the summer of 2008, shattering all preconceived notions of what was possible. While impressed, I was still concerned whether *any* of that money would benefit young adults, a decision which would be objectively made by the American Association of Cancer Research (AACR), one of the nation’s most reputable institutions.

i[2]y encouraged the young adult community to put pressure AACR through a Facebook campaign (which at one point had over 30,000 members) to hear our voices. It was our hope that they would listen to our voices and be objective when considering which dream teams to fund, should any of them be innovatively focused on the unique epidemiological factors in young adult biology.

As it turns out, this was not to happen. The teams which were funded are focused on research which is targeted to benefit the majority population of survivors, aged 40 and over. (Normally, this is the part where I air my grievances)

But not this time.

The research being funded by SU2C is “translational” as opposed to “basic”. What does that mean? Surf on over to http://bit.ly/5UzEF for a quick 101 on the very significant difference between “basic” and “translational” research.

SU2C is clearly changing the conversation when it comes to cancer research by choosing to operate under a new philosophy. This is definitely not the mentality of your grandfather’s cancer society.

With that said – and while there’s nothing wrong with more cancer research – it’s important to recognize that advances in treatments are only as good as the stage at which you are diagnosed.

*This* was precisely the case we wanted to make to AACR and SU2C.

Young adults, aged 15-39, are the population most likely to get diagnosed at a very late stage, where the cancer has progressed and advanced to the point where survival rates are lowest. Why? This population faces unique barriers to prompt detection such as a lack of medical insurance or dismissive medical providers who are not trained to consider the possibility that cancer CAN and DOES occur in our generation.

Ergo, what good are advances in cancer research when they generally have nothing to do with reducing the risk of late-stage diagnosis?

*This* is the conversation.

*This* is the young adult cause.

Apparently we made enough noise to get noticed because SU2C reached out this Summer with interest in meeting with us in Los Angeles to listen to what we had to say. And so, on Tuesday, August 11th, both myself and i[2]y Board Chairman Dr. Leonard Sender sat down with SU2C and opened the conversation.

The good news?

i[2]y will be continuing our dialog with SU2C and evaluating opportunities for how we might work together to bring more attention to these important issues.

It’s not just about white lab coats anymore, people!

It’s about improved medical education to ensure prompt detection, age-appropriate social support both online and offline, access to clinical trials and let’s not forget about those Stupid Cancer Happy Hours!

WE DID IT!

I have never been more proud to be a part of this intensely passionate community of extraordinary activists. Stupid cancer! Survivors rule!

Stay tuned and Rock on!

Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.

A Declaration of Health Data Rights


Health Data Rights

In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

  • 1. Have the right to our own health data

  • 2. Have the right to know the source of each health data element
  • 3. Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
  • 4. Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

Endorse These Rights!

Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.

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