The “Voices of AYAO” feature in JAYAO has stories from real patients and survivors, in their own words. It is our hope that these illustrate the personal journeys and experiences of AYAs living through and surviving with cancer and its effects.

—Editors

Jennifer's Story

Hollywood lies. The odd thought ricocheted through my brain as I watched the slow, torturous process of a life ending. Television teaches us that death is peaceful—a loved one takes a final look around the room, squeezes a hand, smiles contentedly, and gently drifts off to a permanent slumber.

What a pack of lies.

Sitting in a chair next to the hospital bed, holding my husband's hand as involuntary muscle spasms racked his body and his breathing became increasingly more labored and erratic, all I could think was—Hollywood doesn't prepare us for this. But how could it? In what world is anyone prepared to watch a spouse's life end at 31? Who is ready to accept death after a short, 15-month battle with cancer? How can anyone expect to witness “until death do us part” after just 8 years of marriage?

Kurt and I met in 1994 when we were just 16. The connection was instant. I was shy around boys, but he was undeterred. He became my first kiss, my first boyfriend, my first love. Our romance evolved into a durable love story, the kind of commitment that causes a girl to think about sitting in a rocking chair, watching the great-grandkids play and relishing the 50, 60, 70 years of marriage. What Kurt and I had was rare—everyone said so. We were soul mates, partners in every sense of the word.

While we shared many traits—intelligent, motivated, witty, opinionated—Kurt was easily the better half. He was kind, generous, and an immediate friend to everyone he met. People felt comfortable around Kurt, as if they had known him for years. Sure, Kurt could be stubborn, temperamental, and impatient. But he was the guy you called when your car broke down, when you wanted another golfer to round out the foursome, when you had a bad situation that needed to get better.

In August 2008, we had arrived at a joyous point in our marriage. For 4 years, I had been working full time and going to law school at night. It was grueling, and I was finally done. We were excited beyond words—30 years old, in professions we loved, living in Washington, DC, and ready to start our family. I had the month off, so I was occupying myself by remodeling a closet. Kurt came home one night after work and offered to help me sand drywall. I was surprised, because he had been battling the flu—fever, some aches and pains. He said he was feeling better, and wanted to help. As we sanded away, the dust flew. Kurt sneezed … and dropped to the floor. He laid there for a minute trying to get his bearings, a searing pain shooting up his side.

I was worried Kurt had appendicitis. He was betting on a gallstone. The emergency room doctor found nothing. The ultrasound showed no problems, the blood tests didn't reveal any emergency conditions. We were sent home with pain meds and instructions to rest. As the doctor left, he paused and said, “Oh, by the way—the ultrasound technician swung the wand a little wide when he was examining you and happened to notice a few spots on your liver. It is probably nothing, but you should get that checked out.”

Three weeks later: Stage IV esophageal cancer with metastases in the lymph nodes and liver. Terminal. “We can give you palliative chemotherapy if you like.” The answers to the obligatory questions are all no: he didn't smoke, he drank like most young adults, and had no family history or identifiable risk factors to explain how someone so young could have a disease nearly universally diagnosed in people in their 60s and 70s.

As we sat there, reeling from the information that had just been dropped in our laps, two things became obvious: Kurt wasn't going down without a fight and this oncologist on the other side of the table, with his “palliative care,” was clearly not going to be helpful. And so our search began—for information, for options, for the right medical team … for hope. The idea that a 30 year old would or should gracefully accept a death sentence is incomprehensible. There is just too much life left, too much fight—and there is a certain therapy in knowing you are doing everything possible to survive.

So as Kurt's caregiver and cancer copilot, my job was to keep everything moving and everyone working, letting Kurt concentrate on his health. We found doctors willing to fight and who welcomed our collaboration in researching options. We changed his diet. We got second opinions on everything. During doctors' visits, my job was to leave no question unasked. Kurt formed a bond with his doctors and nurses—I made sure they saw my crazy eyes just enough to keep everyone focused. I shuttled around filling prescriptions, filing insurance forms, scheduling appointments, preparing meals, purchasing supplies, and doing every little task I could think of to fight this fight with my husband.

But it was never enough for the internal battle. No matter how hard I pushed the doctors, no matter how vigorously I fought for approval of treatments with our insurers, no matter how diligently I helped with medication, every Friday for nearly 15 months I sat next to Kurt, watching the slow drip of chemo, utterly helpless. I couldn't take the cancer from him, no matter how badly I wanted to. I could help manage the pain, but I couldn't take it away. I could talk about his fears, but I couldn't eliminate them. Nothing, not one thing I did, could directly stop those tumors. It was an acute sense of powerlessness.

But honestly, what can you do? You can try to be perfect—I did. I swore after his diagnosis that we would never argue again. I made it less than 48 hours before picking a fight. I vowed that I would be more patient, and lasted nearly a month before telling him he was perfectly capable of getting his own bowl of soup. I promised myself that he would never know that I wondered what my life would be like if he died, that he would never think I worried he might not make it. And when he caught me sobbing in the shower after the pressure to perform had become too much, Kurt taught me the most important lesson about being a caregiver. “Jennifer,” he said, “we have to talk about things when you are upset, just like we always have. Don't make me stop being your husband just because I have cancer.”

So ultimately, I did the only thing a caregiver can do—be there. I was there when the chemo made him tired. I was there when the fears woke him up at night. I was there when he shaved his head. I was there to watch funny movies and not talk about cancer. And I was there when he died. I was the last face he saw, the last hand he held, the last voice he heard.

Kurt Owen died at approximately 10:10pm, Sunday, December 13, 2009, at the age of 31. At 10:11pm on December 13, I was forced to begin the process of coping with a world that I never envisioned, a world missing the one person with whom I chose above all others to share my life. It was horrific. I alternated between shock, despair, denial, a bit of genuine insanity, fury, and numbness. The first year was a fog. The second year was torture, devoid of the protective shell of shock. While I had not been a caretaker for long, I missed having someone to care for.

Losing someone so important, so young, to such a violent disease is earth shattering, but we do have a choice in responding. We can either let the earth remain shattered or pick up the pieces and construct a better future. In 2011, I was still undoubtedly opting for the former—willing to accept a mediocre life, to simply exist until God called me home to be with Kurt again. But just as Kurt's will to live drove him to fight, so too did my survival instinct overcome the creeping blackness and push me to find a path to joy.

So in September 2011, I quit my job, rented our condo, and decided to spend a month volunteering in Nicaragua. During that month, I got out of my head and back into the world. The month turned into a year—I wrote this article from Nicaragua, where I am spending all of 2012 running a clinic for women and children living in poverty. The joy of helping others, rather than dwelling on my pain, is exactly what I needed to overcome the loss. I have again found purpose, and again found love. I miss my husband with every breath, but I can only honor what we had by living a life that is as full as it was when we were together—that is how I tell our story.

Jennifer Owen, now 34 years old, is a member of the Board of Directors of Stupid Cancer (www.stupidcancer.com) and is currently serving as Director of Clinica Verde (www.clinicaverde.org) in Nicaragua.

Stacey's Story

Let me paint a picture for you: You're a 20-year-old college student. You are just winding down an amazing summer in California and getting ready to go back to school to start your junior year. You're getting all of your routine doctor appointments out of the way before you have to jump on a plane to the east coast in 48 hours. One would expect that the results of regular appointments that had been normal for years would continue to be normal … that was not the case this time around.

While seeing my OB/GYN for a regular check-up, she felt a nodule on my thyroid when palpating my neck. She immediately sent me down to the imaging center to get an ultrasound. That, of course, came back “inconclusive.” And so my journey began. Because I was pressed for time before returning to college, my doctor and I decided I should find an endocrinologist near my school in western Massachusetts to continue testing. After finding a doctor near school, I had more blood drawn, more ultrasounds, a nuclear scan, and fine needle aspirations.

The day before Thanksgiving 2004, I got the phone call that would change my life. It was the doctor. After the “hi, how are you?” greetings of the call, he said, “Well … you have papillary carcinoma.” “Ok…,” I thought to myself. “What does that mean?” I asked. “Well, it means the cells we biopsied are malignant … it means you have thyroid cancer.” HOLY COW! “Are you serious?!” I said. “As serious as a heart attack,” he replied—clearly this guy has a sense of humor. “The good thing is that if you're going to have cancer, this is the one to have. It's easy, and slow growing.” “Oh, well, that's a relief!” I thought. It's the one to have … if I had a choice, I wouldn't choose any type of cancer … DUH! Clearly, this was a conversation that was going down in the books. That day was the first day of the rest of my life.

After that conversation, I picked an endocrinologist at home in Los Angeles, and 3 weeks later was in surgery. A week after surgery, I was told that because all of my primary neck lymph nodes were removed due to malignancy, I would have to be treated with something called I-131, a form of radioactive iodine used to treat thyroid cancer. I was told that before taking the I-131, I would have to go on a strict no iodine/sodium diet for 6 weeks. Those 6 weeks, I ate only plain pasta and steamed vegetables, along with a few ounces of chicken occasionally. The idea was to rid my body of as much salt as possible, so that the remaining thyroid cancer cells that were in my body (which thrive on salt/iodine) would eat up as much of the radioactive iodine as possible and die. After my 6 weeks on the no-iodine diet, I drank the I-131 and was locked in isolation for 24 hours. I chose to drink the treatment as oppose to taking it in pill form so that I would not have to be locked in isolation for 72 hours, as is done for patients that choose the pill form of treatment. While I was in isolation, the nuclear medicine department would come and visit me every few hours to check on me. The doctor would enter in a hazmat suit complete with radiation gun to measure how “hot” I was. It wasn't until I reached a certain rating they would consider releasing me back into the general population. About 7 months later, I had to go through another dose of I-131, including the diet, the blood tests, the isolation, everything.

Presently, I am 7 years out from my diagnosis and am living my life to the fullest every day. I am successfully alternating two doses of Synthroid and have not experienced any major side effects. I have my blood drawn every 6 months and see my endocrinologist once a year.

What you may notice about thyroid cancer patients is that we are not treated by oncologists but instead by endocrinologists. We don't get treated with chemo, we get treated with radioactive iodine. In fact, we really aren't grouped into the general cancer community, probably because we are so “easily” treated. Being a young adult survivor already puts me in an isolated group of people in the cancer community, but being a thyroid cancer patient narrows that field even more because we are not considered legitimate cancer patients! I recently went to see my endocrinologist and mentioned that I was attending Stupid Cancer's OMG! Cancer Summit in Las Vegas (www.stupidcancer.com/programs), and would be speaking on one of their panels. He asked me what Stupid Cancer was. I explained that it is a non-profit run by young adult cancer survivors, for young adult cancer survivors. He asked me why I was attending, and when I said, “Because I am a young adult survivor…,” he replied that was “interesting” in a curious tone of voice.

While the incidence of thyroid nodules are increasing in young adults, the majority are benign. So why at the age of 20 was I part of the small percentage that are malignant? When I asked my doctor what causes thyroid cancer, he told me that in the 1950s and 1960s it was attributed it to overexposure to radiation. While that is helpful for my parents, I was born in 1984. Did I stand in front of the microwave too many times as a kid? Personally, I think it's the environment we live in. We pump chemicals into the air, spray them on the food we eat, and so on. At the time of my diagnosis, I was the youngest patient my endocrinologist had—by nearly 40 years. I was asked by other patients in his waiting room if I was there for my parent or grandparent. Of course, I wasn't.

For the last 5 years, while establishing myself in the entertainment industry I have also dedicated my life to helping the next “me.” I have worked very closely with Stupid Cancer to help other young adult survivors like myself. I started as a general volunteer and worked my way up to chapter chair, regional chair, and now I am proud to be a member of the Board of Directors.

I am very proud to say that I survived thyroid cancer. I beat cancer. When I was diagnosed, I made sure to interview as many of the top endocrinologists (because it is very normal to be treated by an endocrinologist and not an oncologist) and surgeons as possible, and I made the best choices for me. I never took time off from school and was able to graduate with excellent grades and with my friends. I plowed right through my diagnosis. I had a plan, and a path, and I certainly wasn't about to let cancer get in the way of that. One could even think of cancer as a blessing in disguise. I am now more aware of my body than ever, and when it changes, I know. I am proud to have an opportunity to stand up and fight for others like me, and to help them have better options than I had by bringing awareness to all. I am proud of my scars, and the stories behind them.

Make no mistake, I am not “cured.” But I survived, and I am thriving.

Stupid cancer! Survivors rule!

Stacey Owens is now 27 years old and has been cancer-free for 7 years. She is a television producer in Los Angeles. When she's not creating the next best reality show, she can be found at the ranch riding her horses.