“ Think, question, and shout when you need to. That’s the kind of positive thinking that can save your life.
Kairol Rosenthal is a tenacious mAss Kicker! She is a thyroid cancer patient, healthcare blogger, and author. Her book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s (Wiley 2009) is the culmination of her five years of research and interviews with professionals and patients in the young adult cancer community. She has written on the subject for The New York Times and been interviewed on Fresh Air with Terry Gross, Newsweek, BBC Radio and other international media. Her blog everythingchangesbook.com is a hub for conversation in the cancer community. We were able to track her down and ask her a few questions.
mK: Why did you write Everything Changes?
KR: During treatment, I was saturated with images of cancer patients as heros. The ‘hero story’ so did not match my own experience of coping with cancer, and made me feel isolated rather than inspired. I toted a notebook everywhere and journaled prolifically about my own cancer experience, but I wanted to write a book in which I was the provocateur, coaxing from other cancer patients raw and candid stories that I had never seen or heard written about elsewhere.
What’s it like to be a cancer patient as a new mom, or someone right out of college with massive student loans, or someone who lives in a remote rural area, or is a drug addict? I hear enough stories about cancer patients running marathons or climbing Kilimanjaro. I wanted to know how everyday people surmount the monumental task of laying their head on the pillow at night when they feel scared and lonely. I learned some pretty amazing lessons by traveling around the country, plunking myself down in the living rooms of perfect strangers and hearing what they had to say.
mK: What/ when was your diagnosis? How did you find out about your diagnosis?
KR: Almost nine years ago I was diagnosed with papillary carcinoma, aka thyroid cancer. It was a total fluke that on my first ever visit to a chiropractor, she noticed a lump on my neck, yanked me off her table, and sent me packing to the hospital. Like many young adults, however, it still took me seven months to receive an accurate diagnosis. Doctors didn’t believe my lump was anything more than a swollen gland when in fact I had 19 malignant tumors in my neck.
mK: That is a common theme. What were your symptoms?
KR: Thyroid cancer is most often asymptomatic. A patient’s thyroid gland can be riddled with cancer, as mine was, and still function pretty normally.
mK: Who is your hero or heroes?
KR: Terry Gross is my hero. She is masterful at getting people to spill their guts and reveal intimate parts of their lives on air.
mK: What motivates you?
KR: The desire to make right things that I think are wrong.
mK: Yeah, we agree. There is a lot of wrong in this world! We all have to do something about it. When was the first time you felt like yourself after your diagnosis?
KR: I’ve always felt like myself. The first 24 hours after my diagnosis, I was in a mental and emotional fog. The next day, I woke up and snapped out of it. The task of managing my care was enormous and I couldn’t take it on living in a cocooned cancer hide-out or place of denial. Physically, my body has changed: my mind is scrambled, my metabolism whack, my hair thin. But it’s still all me. I cannot butcher my life into the old Kairol or the new Kairol, being myself or not being myself. I’ve always just been Kairol even when cancer pushed me to the extreme.
mK: What makes you laugh, cry, angry?
KR: Hideous McMansions, cake wrecks, and anything said to me when I’m sleep deprived make me laugh. Friends dying from cancer, the long, hard wait for test results, and PMS make me cry. That many cancer patients in the United State die simply because they don’t have access to or cannot afford care makes me angry. Very angry.
mK: Delirious laughter is the best. You are laughing at yourself for laughing at something stupid. Anyways, what would you say is the most interesting thing you’ve done?
KR: Traveling to a remote Native American reservation for an interview with HollyAnna, a young adult cancer patient who didn’t tell anyone – not even her husband or mother that she had cancer. In her culture it was taboo to say the word ‘cancer’, so we could only talk about it in the privacy of her car. We drove in circles for hours through the barren foothills. She took me past all the places where she grew up and told me her story of living with cancer in secrecy.
mK: Culture mixed with an intimidating diagnosis can sometimes make for interesting conflicts. What was the toughest challenge you faced as a young survivor? How did you overcome it?
KR: My employer forgot to submit my cobra papers so I had no health insurance when I was diagnosed. I spent a month on the phone everyday from 9-5 fighting for my coverage. I had to be shrewd, organized, and tenacious. I also told a few white lies to paper pushers along the way. My life was on the line. Desperate times called for desperate measures.
mK: What is your guilty pleasure?
KR: I have lots of pleasure but not much guilt. One of my greatest pleasures is working from home and never scheduling anything before noon. It lets me write all night long and go to bed as the sun is rising.
mK: Staying up late is bad for you! hahaha! Do you still choreograph? What is your favorite kind of music to dance to?
KR: I obsessively choreograph dances in my mind when I’m getting ultrasounds and gliding through the PET scan tube. But I haven’t choreographed a live piece since my book hit the shelves. It’s hard to be a full-time writer, choreographer, and cancer patient. Cancer has taught me that there are limitations in life and I cannot do everything at once. When I get back into the studio, I’m sure I’ll throw on some opera and Led Zepplin. That music inspires me like nothing else.
mK: OK, we admit it our dance repertoire is limited. Is it possible to incorporate the “Running Man”, the “Roger Rabbit”, the “MC Hammer Shuffle”, and the “Soulja Boy” into one of your routines?
KR: Anything is possible. I’ve just gotta ask if it will make sense to the audience. If so, I go for it. Would you like to audition?
mK: HAHAHA! It will make sense to someone. They would be entertained/repulsed. Anyways, what do you like to do in your spare time?
KR: I’m a big time nerd. I read the encyclopedia for fun and do tons of online research about healthcare policy. I also throw dinner parties and love wasting time on apartmenttherapy.com
mK: “Being a nerd” is the new “cool”. That’s what our imaginary friend, Hector, tells us. What are you doing now?
KR: I’m curled up in a blanket next to my dog writing a post for my blog about the limitations of positive thinking and what a big fan I am of realistic thinking.
mK: No rest for the weary. Any advice for people or loved ones that get daunting diagnoses?
KR: 1. Let yourself be scared if that’s what you’re feeling. It takes too much energy to pretend everything is okay when it isn’t.
2. Get multiple opinions from top-notch doctors and learn everything you can about your disease. If researching your disease gets too scary or overwhelming, ask a smart friend to do it for you.
mK: Tell us something about yourself that people probably didn’t know… anything.
KR: When I was a kid I thought I could convince my mom to let me have a pet hippopotamus in our garage.
mK: Did you know hippos cause more deaths annually than lions? We’re glad your mom never got you that hippopotamus. Smart Lady… Any parting words for all the mAss Kickers?
KR: Think, question, and shout when you need to. That’s the kind of positive thinking that can save your life.
Thanks Kairol for taking the time to hang with us! For more information about her book, Check out her blog. Looking forward to the next book! Now, go to bed early or the delirious dancing hippos will attack you!