Emerging from cancer treatment at age 29, choreographer and writer Kairol Rosenthal embarked on a 5-year journey interviewing young adult cancer patients across the country. I had the opportunity to ask her some questions about her own experience, her book, and living with cancer in one's twenties and thirties:
CH: How is being diagnosed with cancer in your twenties or early thirties different from being diagnosed at other times in life? What makes it harder/easier?
KR: Twenty and thirty-somethings are the largest group of uninsured and underinsured adults in America, so we are diagnosed at later more advanced stages. Unlike pediatric and older adults, no age-specific clinical trials exist to study our unique biological needs. We experience higher rates of depression than older cancer patients and face potential fertility complications as a side effect of treatment. Young adults experience more geographic, career, and relationship flux than our older counterparts. Moving, living with roommates, finishing college, changing jobs, dating, starting long-term relationships, and raising young children complicate the psycho-social terrain of cancer and interfere with continuity of care. On the upside, compared to older cancer patients, 20 and 30-somethings are more comfortable questioning our doctors and cite far more benefits from online health information. We are less likely to have complications from concurrent diseases like high blood pressure or heart disease. We often recover from treatment more easily than older patients. Few of us remember the days when cancer was a whispered word.CH: Why did you write the book Everything Changes?KR: I was diagnosed with cancer at twenty-seven. There were plenty of books geared to the AARP cancer crowd but no good resources for those of us cramming for finals, flirting in bars, climbing the first rung on our career ladder, or changing stinky diapers. The needs of 20 and 30-something cancer patients vary greatly from those of pediatric and older adults.
CH: If you had one thing to share with recently diagnosed 20 and 30 somethings that you wish you had been told, what would it be?
KR: You do not have to become a glittery superhero in order to fight adversity. Cancer is hard stuff. Strength comes from being real. Allow yourself to sometimes feel vulnerable and to have meltdowns. They do not last forever and you may even feel invigorated afterwards. Secondly, the definition of hope is fighting for your best care. Cancer is not only emotional and physical, it is administrative too and the burdens of paperwork can really impede our healing. Many hospitals have patient representative services or ombudsmen. If after your second try you are unsuccessful at getting records, obtaining procedural approval, or resolving a financial matter, have one of these professional advocates intervene on your behalf. Think, question, and shout when you need to.
CH: Can you share a little about some of the stories you highlight in the book?
KR: I found people who were raw and incredibly honest about living with the unknown most compelling. Wafa'a, in San Francisco, became addicted to clubbing because she was too afraid to be home alone thinking about her cancer. HollyAnna, from the Yakima Native American reservation, went through treatment while keeping her cancer diagnosis a secret from her husband and mom. Geoff, a junkie skateboarder in Oklahoma, put himself through substance abuse detox while doing in-patient chemotherapy. I had already seen the stories of cancer patients who climbed Mount Everest or ran the New York City marathon. I wanted instead lessons from cancer patients who were not on the six o'clock news yet were leading outrageous lives and had uncommon insights to share.
CH: What is a concern you heard repeated by many of the patients you spoke with?
KR: Many talked about the jarring shift after treatment when they were catapulted from a focused, regimented medical routine back into daily life. Friends and family are popping the champagne cork to celebrate the end of cancer, but many patients described this phase as just the beginning and often the hardest part of it all. For many, this was the first time since diagnosis that they were able to absorb the emotional bombshell of cancer. Add to this transitioning from acute to chronic care, managing long-term side effects and fear of reoccurrence, paying off medical bills, and gluing together the pieces of their fragmented college lives, careers, and relationships. This is a time when support peels away but patients may need it the most.
CH: What advice do you have for the loved ones of 20 and 30 somethings with cancer?
KR: Listen. Engage us in conversation, ask broad questions, and let us guide the discussion. If we don't want to talk, don't push us. If we do and our feelings don't make sense, are contrary, or we sound frustrated and irritated, that is normal. Go with the flow, let us vent, and don't try to make us feel better. We often feel isolated and misunderstood, and the best gift you can give us is just listening.
CH: What is the greatest gift you have received from your own diagnosis?
KR: One night during treatment I was in so much pain I wanted to die. This event of facing my own mortality cracked open part of my heart, and brought me closer to understanding how others face pain and suffering. As a result I've become a much less judgmental person. It sounds so cheesy. I'm not a touchy feely person, but there is no other way to couch the experience.