Monthly Archives: June 2011

A Limp, A Shaky Hand, A Missing Colon: Getting Used to a Post-Cancer Body

A Limp, A Shaky Hand, A Missing Colon: Getting Used to a Post-Cancer Body

A woman I know has grown frustrated that her husband hasn’t returned to full health since he completed his brutal treatment regime for nasal cancer. His port came out two months ago, so according to her, he should have recovered by now. What she doesn’t realize is that cancer treatment casts a very long shadow.

Most people know that surgery, chemotherapy, and radiation are dreadful to endure, but many do not appreciate how profoundly changed our bodies are at the end of the process.

Many of us leave the cancer center with missing parts, altered functions, and angry scars that may never heal. And though our cancer souvenirs may not be visible—we tend to keep them well hidden under clothes and behind doors—they can affect us for years after treatment is done.

This comes as an especially big shock to young survivors. We thought we were in great shape when a random lump, blood test, or x-ray suddenly revealed otherwise. I was enjoying an easy pregnancy when I got diagnosed. One survivor I spoke to had just mastered ice climbing and another played competitive hockey when they learned they had the disease.

Suddenly we go from being at the peak of our physical ability to having serious physical limitations. We know we are lucky to be alive, but living in these new bodies isn’t always easy.

Elan was a 27-year old jock who thought his sciatic nerve was acting up. The pain became so bad he finally had an MRI. Only then did he realize he had a malignant tumor the size of a football lodged between his sacrum and hip bone. During a 15-hour surgery, doctors removed the tumor, but they also took out a significant amount of pelvic bone and musculature.

Elan’s recovery began in a wheelchair. When I met him a year later, he had progressed to a cane. A few years later, he dropped the cane, but walked with a limp.

“I was a 27-year-old guy who loved sports and loved being active. I associated that with my personality. It was a relief to be able to walk again, but I miss all the other stuff I did. There are a lot of sports I can’t do now. Some I have to do lightly, because I can’t put myself out there in an aggressive way. It has been difficult to let go of that part of myself.”

Even some of us who didn’t have major surgeries find ourselves impaired in surprising ways. One young mother I spoke to discovered that the chemo she had taken for ovarian cancer left her with neuropathy in her feet. For months she felt so unstable she couldn’t carry her baby. Several musicians I know have been rendered similarly shaky at their instruments.

Limps and unstable hands and feet can broadcast the fact that we have health problems. Yet enduring private side effects brings its own burden: people think you have left cancer behind when in fact you still have to deal with its fallout.

If you met Michelle, you would be struck by how energetic and accomplished she is. From the outside, it appears this successful businesswoman has put cervical cancer behind her, but the truth is that the radiation she had to cure cervical cancer left her with colitis.

“All of the sudden, it comes over me and I feel an uncontrollable sense that I have to go the bathroom that second. I end up leaving panties in trash cans all over the place. Once it happened on an airplane in First Class. It was during landing and I couldn’t get up. I was sitting next to a very distinguished businessman, and I just wanted to crawl into a hole and die. I try to make light of these things and remind myself I am alive. But this will define my life. These physical aspects have changed how I see myself.”

And that is one of the hardest parts of dealing with ongoing side effects: they remind us that we have been permanently altered.

Jeff, another jock in his twenties, had his colon removed after he got diagnosed with colon cancer. He now has to go the bathroom about 10 times a day. An avid rugby player, he has to take Imodium before he hits the field so he doesn’t have to go to the bathroom in the middle of a match. He has adjusted to these new routines, but he says, “Every single day, 10 times a day, I am reminded of cancer.”

When we are sitting in the oncologist’s office, learning about our treatment plans and wondering if we will live or die, we don’t focus on the aftermath of the cure. We just want to live. And when we finish the toxic regimes and the hair grows back, our loved ones want to believe we are as good as new.

That isn’t possible for all of us. We may never be able to play football, go jogging, or play the piano like we used to. We know it is great to be alive, but we also struggle with losing physical abilities we expected to maintain for decades to come. Maybe if our friends and family knew that, they would be a little more patient with us when we chafe in our new skin. And maybe we would be more patient with ourselves.

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.

Being a Lesbian with Breast Cancer

Being a Lesbian with Breast Cancer

The following was originally published on the web site of SHARE, sharecancersupport.org .

In 2006, while in my 20s, I was diagnosed with breast cancer. As many people know first-hand, a cancer diagnosis changes your life overnight. I went from being, I thought, a healthy young singer-actress with a day job, to being a full-time medical patient who still had to hold onto that day job for dear life because I needed the money and health insurance. And, once again, the difficulty of being a lesbian in a heterosexual world reared its ugly head.

Some people question whether being a young lesbian is all that different, in the cancer setting, from being a young straight woman. I say, it isn’t and it is. On one hand, young women of any sexual identity going through breast cancer face many of the same difficulties. Many of us lose body parts which, to society, define the female gender: our breasts and sometimes our ovaries. Some of us are thrust into early, draconian menopause. Many worry that our options for having or adopting children have been drastically reduced. Many struggle with the decimation of our short-life savings.

But there are differences. The forms I filled out in most doctors’ offices had no category for me when asking about marital status, which made me feel isolated, and had no questions at all about sexual and gender identification. I have had to deal with coming out, time and again, to doctors, nurses and medical personnel; to explain that my female “girlfriend” is my partner, and thus a prime member of my support system, not just a friend who happens to be female. Any discussion of the side effects of treatment on fertility and sexuality has begun with the assumption that I am having sex with men.

Normally, correcting people doesn’t faze me. Added to a new cancer diagnosis, everything fazed me. Coming out to a doctor requires an extra step that heterosexuals don’t have to take, and this step requires extra energy. As anyone who’s been through the horrors of cancer diagnosis and treatment knows, any extra expenditure of energy can be the tipping point between hanging in there and plummeting off a metaphorical cliff.

In addition, when coming out to a medical professional even in the seen-it-all city of New York, there is the worry that I may receive substandard care, that my partner may be barred from visiting me in the hospital, or, most likely, that I may receive care that does not adequately address my different circumstances as a woman partnered with a woman.

For example, one day, years after my diagnosis, my oncologist told me out of the blue to “be careful,” meaning to use contraception so as not to get pregnant while on Tamoxifen. I corrected her, but I was horrified that she had been treating me for three years and yet knew nothing about my sexuality, and, when I came out to her, had no reaction other than to make a note in my file.

I suppose, in retrospect, that in those blurry early days I never mentioned to my oncologist that I am a lesbian. But the onus should not have been on me. I should not have had to expend extra energy to correct a widespread assumption that I was heterosexual.

The way I identify my sexuality and gender, and the gender of my partner(s), is extremely relevant to my treatment and long-term survivorship. When medical personnel or layperson supporters automatically assume that patients are heterosexual or have conventional gender identities, then they are not, for example, likely to discuss increased cancer risk among lesbians, or the need for ovarian health awareness among both lesbians and those who identify as Female-to-Male transgender, or the potential toll on emotional health that adding another layer of difference in gender or sexuality can take on a cancer patient. And they risk alienating patients and discouraging them from sharing information that would aid them in providing the best care possible.

Culturally competent medical care and support for LGBT cancer patients needs to start with the elimination of assumptions about sexuality and gender, and the inclusion of language, on intake forms and in conversation, that signals to patients that being LGB and/or T is an accepted and embraced possibility, from the beginning.

Mimi Ferraro

Mimi is a singer, songwriter, actress and yoga teacher living in NYC.

50/50 Shows the Isolation of Being a Young Cancer Survivor and Makes Us Laugh Too

50/50 Shows the Isolation of Being a Young Cancer Survivor and Makes Us Laugh Too

Producers of the new film 50/50 have released a trailer, and young cancer survivors everywhere can breathe a sigh of relief. The movie, starring Joseph-Gordon Levitt, Seth Rogen, and Anna Kendrick, follows a 27-year-old guy who gets diagnosed with cancer. Judging from available scenes, it looks like Hollywood might have finally gotten cancer right.

Usually when young people have cancer in movies, the disease functions as a plot device. In Sweet November and A Walk to Remember, it provides the poignant sting in a tragic love story. In this year’s A Little Bit of Heaven, it presents a way for our plucky heroine to meet the man of her dreams: an adorable oncologist. Most of the distasteful aspects of cancer—baldness, hours of chemo, fears of mortality—are left on the cutting room floor.

50/50 appears to be different. It makes dealing with cancer the central story and tells it with humor and honesty. It also captures something every young survivor can recognize: the isolation that comes with getting cancer in your 20s and 30s.

Adam, the main character, has friends and family who care about him, and yet he still feels out of sync with everyone around him. One scene shows him sitting in a chemo chair next to a fellow patient, a man who is old enough to be his grandfather. Another scene shows his buddy trying to reassure him by stammering that Tom Green beat cancer; he means well, but he is clearly out of his depth.

His friend encourages him to use the cancer card to pick up girls. Adam gamely walks up to a girl in a bar and says, “Great song.” After she answers, “Totally,” Adam blurts out: “I have cancer.” Naturally that goes over like a lead balloon, and his friend steers him away saying, “I was wrong! It was weird like that!”

Young survivors will laugh in recognition at these scenes. We know too well what it’s like to feel both too young and too old to fit in.

When I was diagnosed with breast cancer at the age of 32, I was the youngest person in the oncologist’s office—by decades. Other patients carried pictures of their grandchildren and talked about early retirement. I was hoping to live long enough to see my newborn enter kindergarten.

At the same time, my friends couldn’t understand what I was going through. While they were soaring along with their careers and relationships, my life had been hijacked. I was consumed with finding good veins for chemo and dealing with temporary menopause, and many friends didn’t know how to react. They would’ve known how to comfort me through a bad break up or fertility problems, but cancer simply wasn’t on their radar screens yet.

Every year, 70,000 people between the ages of 18 and 40 get diagnosed with cancer, and yet none of us is prepared for it. Dr. Patricia Ganz of the U.C.L.A. Medical Center says, “Our research shows that younger patients have a harder time, both physically and emotionally. It is not something they’ve expected.”

We enter the gauntlet of cancer treatment at the peak of physical fitness, and we are shocked to discover that our bodies may never look or feel the same. One cervical cancer survivor I spoke to whose radiation left her with a periodically malfunctioning colon said, “What 30-year-old woman poops in her pants? I laugh about it now, but you don’t get told that this is what your life will be like afterwards.”

Nor do we know how to deal with uncertainties like learning our odds of survival might be 50/50. How can we plan for the future if we don’t know we will have one? And like Adam in the film, we have to figure out how to the topic of cancer fits into the dating scene. It’s not easy bringing up life-threatening illnesses in a bar or talking about altered sexual functions in the bedroom. One young testicular cancer survivor asked, “How do you tell a girl that you only have one ball? I think my libido would be better if I wasn’t scared about that.”

These are weighty questions, and many of us use humor to deal with them. One woman I met at a support group threw a Bon Voyage Titty Party before her double mastectomy. Another survivor who had testicular cancer told me he took a bumper sticker that said “Got balls?” cut off the “s” and proudly stuck it on his car.

Most young survivors will welcome the comedy running through 50/50. We have utmost respect for the suffering and grief a diagnosis brings, but it feels good to laugh in cancer’s face once in awhile.

The humor has to be real, though: you can’t poke fun at cancer if you haven’t been radiated yourself. 50/50 was written by Will Reiser, who based the film on his own experience. By sharing his story on the screen, he will make survivors laugh and, hopefully, feel less alone.

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 Birthday Gift of Giving

The Birthday Gift of Giving

Have a birthday or special occasion coming up? You could ask for soap on a rope, a new pair of socks, that car your friends can’t afford to buy you OR you could ask for something less useless, and super cool.

Although the temptation of a new tie, picture frame or re-gifted plastic beer mug may be hard to resist, you can dedicate your birthday wish to i[2]y, and ensure you friends spend their $6.50 on something you wont forget about tomorrow.

By dedicating your birthday via the Facebook Cause Application, your friends and family can make a direct donation to help young adults battling cancer in honour of your fabulous self.  This is any easy way for you to help someone out without ever removing your butt from the cushy comfort of your couch, or having to write out lengthy thank you notes for crap you’ll never use.

Your birthday is OBVIOUSLY the most important day of the calendar year, spread the love by forcing other people to celebrate with you in the form of a donation.

Your not getting any younger. The gifts aren’t getting any more exciting. Donate your birthday today, and help ensure that other young adults get busy living!

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.

Curiosity Did Not Kill That Stupid Effing Cat

Curiosity Did Not Kill That Stupid Effing Cat

The fact that they tell us “curiosity killed the cat” is bullshit. In the case of our medical health “curiosity” may be the one thing between us and the morgue.

As young people it is our job to yell, scream, or worse…. tweet about things we are suspicious of. We are a generation that has no qualms with questioning authority.

Whether it is  blogging about a gay- bashing employee at Starbucks, recording a racist professor on our cell phone or sending the photo of our local politician’s “Wiener” to every one of our Facebook friends, we are professional whistle blowers. We are suspicious of nearly everything from the calorie count in our lattes to the reasons for the war. We ask questions, questions that force people to be accountable whether or not they want to. For this reason we are powerful, and even scary. But we need to seriously consider if we are asking the right people the right questions.

We are great at challenging authority and fighting the “man” when he is a politicians or our parents but  what if the “man” is our doctor?

 

Maybe I’m too pushy, or overly concerned with my health, but I’m not sure there is a such thing. The past few years I have come to realize as a patient, I may be a doctors worst nightmare, and I’m totally ok with that.

Luckily, I do not have cancer but I am all to aware of how many people my age do. Working with i[2]y  has only reassured me of this. When I get to the doctors office I often feel as though they are prepared to tell me what is wrong with me rather than asking. My bra-burning, tree hugging, as my father would say “communist” college education may have taught me to be overly “curious”, but in the case of my health it has saved my life.

 

A year and a half ago, I had a very severe case of strep throat. For two weeks, I was in the worst pain I had ever felt in my life. I knew and insisted that it had to be more. After 3 doctors visits and no relief, or consideration of questions I turned to my good old friend the internet. Web MD told me what my real MD could not. After a 4th visit I was told once again I was wrong. This time I specifically asked about what Web MD had said. I was responded to with a shake of the head and a “everyone’s a doctor” to which I quickly replied “could you check just one more time?”.  It was, exactly what I thought, something much worse then strep throat, something that could kill me. They performed emergency surgery, and I was better the next day. There was no apology, or mention of the fact that someone, I’ll give you a hint, the someone with a Medical Degree was wrong.

 

Since then, I have been a Barbra Walter-esque patient. I ask questions, lots of them, and I never ever feel bad. Although this may be annoying to the doctor there are worse things. They get paid the big bucks, the least they can do is tell me which chemicals I’m taking and why.

 

Our entire lives we are taught that we should trust the doctor. Take what they tell us, do what they tell us, and shut up. This is not a luxury we give any other people in our lives, certainly not our parents or politicians so why do we let our doctors get away with it?

 

Do not misunderstand me. Doctors, and medicines are necessary and often times wonderful. BUT, our health is one thing that we have a vested interest in. What we do with it has a more personal immediate effect on us than any of the other things we love to complain about. It’s time we start tweeting, blogging, and asking. These are the issues that literally can save our lives.

 

To those of you living with cancer and the survivors:

I know I’m preaching to the choir. Obviously people living and recovering from cancer knew and still know  to ask questions. You are a model of how the rest of us should act. You went to the doctor when something was wrong, you know to ask, know to trust your instincts, know to be pushy and most of all you know how to fight.

 

The rest of us need you to teach us how. Keep up the good work, but please, please share what you have learned. You are the real experts.

 

Yes, the gas prices suck, Yes, Anthony Wiener is an idiot, Yes, Charlie Sheen is a train wreck but in a world where 70,000 Americans between 15-40 are diagnosed with cancer each year (that’s one every eight minutes), these are the real issues we should be talking about.

I say, if you get pissed off about one thing this year, this should be it. Doctors are people, they make mistakes too. No one cares about you more than you. Get pissed, get talking, start demanding answers.

 

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