Abstract
Tamika's Story
From the time I was eight years old, I knew who and what I was going to be. I always knew that I would be a television journalist, reporting on stories that were important to me and to my community. I was the little girl using a comb as a microphone, interviewing everyone in my house! I even had a timeline that I created to keep myself on track to getting there. Yes, I was one of those kids—always crafting my master plan to change the world. My timeline was working great, and I can assure you that it didn't include cancer!
But then in high school I had my first encounter with the big C. My father, who had been struggling with colon cancer, died the day before my 17th birthday. I was devastated. He would never get to watch me anchor the evening news, he would never walk me down the aisle—and it was all because of cancer. Little did I know that, in just a few years, cancer would throw me my own curve ball.
In April 2001, I went in for a routine Pap, after not having had one for a few years. I was expecting the routine prodding and poking, the uncomfortable climb into the stirrups, and the heat of the doctor's lamp to be the most unbearable part of my visit. Instead, I got the shock of my life: a diagnosis of cervical cancer. I was devastated. Here I was, 25 years old, working in Washington DC as a successful television producer, and having the time of my life. Without warning, that all changed. Instead of thinking about my next interview, I was suddenly thinking about the end of my life. At this early stage in my life, I could only think, “This is it?” I fell into a deep depression and retreated from most of my friends. How could they understand this when I didn't even understand what was happening? Honestly, who expects to get cancer? Who has time for cancer? Certainly, not me! Cancer isn't quick and easy—not even the so-called “good types.” You don't just jump on and then back off.
My doctors told me that my best chance at living was to have a radical hysterectomy. That meant giving up my womb and any chance of getting pregnant and giving birth. This simply was not an option for me. I wasn't married and didn't have any children, but I always thought this might change. There had to be another way. My doctor told me about a procedure called a radical trachelectomy—but there was a catch. If I were a candidate for this procedure, I would have to get pregnant immediately or freeze my eggs.
I didn't know what to do. It was one of the hardest decisions I've ever had to make. I got second opinion on top of second opinion. I met with ministers and consulted and prayed about it with family and close friends. During this time, the hospital constantly called to find out my decision. Time was running out. Harvesting my eggs was very expensive—and my health insurance wouldn't pay for it because I was unmarried. It was impossible to raise the funds. Finally, everyone agreed just going ahead with the hysterectomy would be best for me.
Feeling defeated, I agreed to the radical hysterectomy. The hospital wanted to schedule my surgery immediately, but I found an excuse for every date they suggested. They finally scheduled my surgery for June 14. So on June 14, 2001, at 7 a.m. at Johns Hopkins Hospital in Baltimore, everything I thought that made me a woman was removed. I was heartbroken. I felt I had given up a child that I never had. A part of me was gone, and I would never be the same again.
During my cancer treatment, I didn't meet any people like me—young, career-driven single people with cancer. Most of my fellow chemo buddies were married, grandparents, or just at completely different points in their lives, so there was no real connection or support for me. My friends and family tried to comfort and support me the best they could, but if you aren't actually going through a cancer diagnosis and treatment, especially as a young person, you can't truly understand. I felt extremely lonely.
A chance introduction renewed my hope. Near the end of my treatment, I was introduced to Brock Yesto of the Ulman Cancer Fund for Young Adults. This meeting became the catalyst that changed my life and made me a true cancer fighter. I quickly got involved with the organization.
Through my involvement with the Ulman Cancer Fund for Young Adults, I was selected as a community representative for the 2003 President's Cancer Panel meeting for adolescents and young adults that took place in Austin, Texas. It was there that I met Doug Ulman, Lance Armstrong, Heidi Adams, Lindsay Nohr Beck, Susan Leigh, Karen Dyer, Octavio Zavala, Craig Lustig, Amy Dilbeck, Michael Lin, Tracy Cook-Brewton, and Eric Rodriguez. That weekend was filled with lots of “Look at my port scar!,” “What meds were you on?,” and “What about dating and sex?” There were lots of giggles and tears. It was the first time that I had met people like me—single, young, and with cancer. They touched my life in a way that will always be with me, and I started living beyond my cancer right then and there. At that meeting in Austin, I became a cancer advocate. I later went on to found my own organization, Tamika and Friends (www.tamikandfriends.org), to help women who have been diagnosed with cervical cancer.
I get a warm feeling when I look at the young adult cancer advocacy world today and the many resources that it has to offer. Before that meeting in Austin, I was in an internal struggle with myself. Once I finished my treatment, I didn't want to be connected to the cancer world. I didn't want anyone to bring up my cancer, and I didn't want to be reminded about my experience with it. I just wanted to be me—the “me” before cancer. I tried really hard to do just that, but somehow my cancer was always in the back of my mind.
I now know that cancer never leaves you. You may heal from the disease, but its effects will always be a part of you. You'll never forget the way it made you feel or all the scars that it leaves behind—the ones that can be seen and especially the ones that cannot. Sometimes I get tired and overwhelmed and I think about how my life could be so different if I didn't spend so much time fighting cancer. But my life is exactly as it should be. I beat cancer and I'm doing everything in my power to make sure that the next person can also.
True to the little girl in me, I've gotten my life back on that timeline that I created many moons ago. And I've accepted and even embraced my little detour called cancer. Without it, I wouldn't know how incredibly strong I am and how much of an impact one person can truly make.
Tamika Felder, now 35 years old and cancer-free for almost 10 years, is an award-winning television host and producer in Washington DC. She is an avid traveler and is always planning her next big adventure.
Matthew's Story
I was 11 years old the first time I sat down at a piano and asked my mother, “Where do you put your fingers?” She showed me a simple five-note scale with both hands and—almost instinctively—I repeated it with precision. The next words out of her mouth were “You're getting lessons.” At that point, I knew music would always somehow be a part of my life. It was 1985.
It wasn't until my third year of college that I realized a true career in music was possible. My dreams of composing symphonies for film were drawing nearer with each semester. A trip to USC's cinema school in the spring of 1995 sealed the deal and I knew where my life was going.
In the summer of 1995, I was enjoying a paid summer internship for Dean Witter in the World Trade Center when I first began to notice that my left hand was behaving strangely. It wasn't until I got back to school and began playing piano again that I noticed a major difference. That fall, my hand slowly lost its dexterity and eventually failed all fine motor coordination tests, rendering this aspiring pianist (and lefty) unable to perform, write, or type.
A diagnosis of medulloblastoma in December would make strange sense of the madness and put my dreams on hold.
My invincible life came tumbling down in an instant and two words summed up the experience: isolation and resilience. No fear. Perhaps blind ignorance and deft denial served their purpose but, in the end, how dare this get in the way of my dreams? The pianist who couldn't play and the college senior who couldn't graduate was determined to see through this uncertain future. “When am I going to die?” I asked the doctor. Or is this death?
I was told that my life in the wake of my cancer diagnosis may not be a bed of roses given the 33 torturous post-operative sessions of high-dose craniospinal radiation (5940 cg) I was getting. Upon completion of treatment, I lost 110 pounds in less than three months. After throwing up 5–10 times per day during that period, I eroded the lining of my esophagus (antiemitics were of modest help), inducing a permanent physiological and neurological dysphagia. My saliva glands were decimated (and, to date, only operate at 70%) leaving me with a chronic xerostomia. I was left virtually infertile, my testicles and sperm production ceasing to function correctly. My brain, eyes, ears, glands, spine, heart, lungs, liver, kidneys, and primary chest organs now all faced a potentially compromised future and, even more scary, a near certain and unpreventable secondary recurrence of cancer within 10 to 20 years.
The best part was yet to come as the doctors then recommended a year of highly toxic chemotherapy. Considering the radiation nearly killed me, I was not terribly interested in even considering this. So I blatantly asked them, “When am I going to die?” and was told I had a 50% chance of surviving for five years (which might have been fine if I were 80 years old but is certainly not okay when you're only 21).
I then inquired as to how much that 50% would increase by if I accepted their recommendation for a chemotherapy regimen. They responded—“55%.” Some quick math in my head told me that's only an added benefit of three whole months. So, without chemo, I could die within five years but with chemo I could die within five years and three months—and be predisposed to an even more miserable quality of life than I was currently enjoying, thanks to linear acceleration.
Even more so, I discovered that vincristine, one of the chemotherapy agents in the cocktail that was suggested, would have essentially given me potentially long-term peripheral neuropathy in my fingers and toes. If I was going to die in five years anyway, I at least wanted to see if I could play the piano again one day. Peripheral neuropathy would have severely inhibited that from happening. This was no longer about the quantity of my life—it was about the quality.
I told the doctors, “Thanks but no thanks,” declined chemo, walked away knowing I took ownership of my disease, and have never looked back since.
I may have survived, but only in the loosest sense of the word. I presently live a “better than the alternative” lifestyle, meaning I'd rather be here with these issues than dead and useless to the world. Good came from this.
Having not been offered any physical therapy, psychological counseling, age-appropriate peer support, or survivorship training at the cancer center, I had no choice but to self-rehabilitate my left hand and re-learn how to play the piano again.
Three years after treatment, in late 1998, I finally got busy living. One of my happiest days was when I released my first solo piano album—Scribblings—of songs that had been composed in my head for almost three years post-treatment. It took that long for my left hand to regain its strength and dexterity at the keyboard. I may never be a Hollywood composer but I still had my music. A second album—Every Step of the Way—followed to commemorate my five-year remission, and a third was composed but never released.
In 2003 my fertility returned; however, I will forever experience extremely low counts and below average motility. I continued to spend $400 a year for sperm banking until 2009, when my wife and I required a reproductive specialist for fertility assistance (we are now the proud parents of a twin boy and girl).
In 2004, I had an intermittent arrhythmia and developed ocular migraines. In 2005, I had ocular and periodontal shingles along with the chronic onset of irritable bowel syndrome, colitis, and gastritis. In early 2006, I began to experience catastrophic depression and mania. I was diagnosed as bipolar and it was the general consensus of my providers that this was yet another latent influence on brain chemistry from my treatments. In late 2006, I had a testicular cancer scare as a result of a new circulatory imbalance. On March 18, 2007, within a span of three days, I lost all hearing in my left ear. The diagnosis? “Sudden Sensory-Neural Hearing Loss,” a rare condition that my oncologist confirmed is without a doubt a long-term side effect of my post-operative brain radiation. In 2008, I was treated for pleurisy and a double hernia. In 2009, I experienced “Sudden Sensory-Neural Hearing Loss” again in my right ear. In 2010, I had pertussis and severe influenza.
It may be impossible to determine if any of these chronic conditions are related to my cancer treatment but it's safe to say that I've been through worse. Truth be told, I can only imagine what may lie ahead.
Is this what it means to be a cancer survivor?
A decade of experience and reflection and dissatisfaction yielded the “I'm Too Young For This! Cancer Foundation” (i[2]y, www.stupidcancer.com), the nation's largest support community for young adults affected by cancer. Its mission is to empower young adults by building community, improving quality of life, and providing meaningful survivorship.
Four years after its inception, i[2]y has become the change I wished to see, creating lasting change in how the public relates to cancer. I founded this organization because I believe that this orphaned age group within the cancer continuum stands to lose the most without proper diagnosis, adequate targeted treatment, access to quality care, long-term follow-up programs, and social networking support. After all, young adults have the rest of their lives to reconcile the trauma, move forward, and confront its ramifications.
In our small niche of the world, we're a hit. And i[2]y is making a difference in reducing the feelings of isolation faced by so many. All of the odd medical issues I've had for the past 15 years have only served to fuel my passion to make a difference.
I am a survivor because I choose to be. I am proud of what I have been through and hope to encourage others to stand up, embrace their survivorship, and shout to the rooftops “I am still here!”—which is why I hate when people refer to us as “victims.” (Dear Media, Never use that word again. Love, Matt.)
Cancer, at least for me, was not a death sentence. It was a life sentence of vigilant self-advocacy navigating the chronic conditions that continue to befall me in the wake of my simply not dying from cancer 15 years ago. There are 10,000,000 like me living with, through, and beyond cancer in the United States, 600,000 of whom are still under the age of 40 and have the rest of their lives to consider the long-term impact of their survivorship.
Life is about choice. Remission is not a cure. Survivorship is all the rage.
A native of Brooklyn, NY, Matthew Zachary, now 36 years old and 15 years cancer free, holds an interdisciplinary BA from the State University of New York at Binghamton and currently lives in Brooklyn with his wife and twin children, Koby and Hannah.