Everything Changes - The Guide to Young Adult Cancer

I remember sitting in my mom’s car in my mid-twenties, tears sliding down my face.  “Mom, I have something to tell you: I don’t want to have kids.”  I felt horrible denying her grandchildren, and felt like there was something wrong with me too.  Everybody I knew was feeling the biological clock ticking or was at least excited about the prospect of it in the near future.  My mother was, and still is, incredibly supportive and understanding.  For me, it has been a harder ride.

There are lots of reasons I’ve never, ever wanted to have children.  I’ve always felt my career was more important.  I’ve felt (and still feel) that I can do more good in this lifetime trying to help a part of society rather than focusing intensely on raising one or two people.  Plus, as a nanny for many years, I got a great glimpse into what parenting is all about. Sometimes I wonder if I used up my parenting credits on someone else’s kids.  But I suspect that I’m probably just an educated shopper and that if others took a test drive before committing, our population would be smaller.

Pregnancy has always seemed to me like illness, with doctors, check ups, and bodily changes beyond my control.  The idea of something growing inside of me reminded me of a tumor long before I was ever diagnosed as a young adult cancer patient.  I’ve always been a big fan of adoption, hoping that if I ever wanted to change my mind about parenting, adoption might be a fall back.  (Though, while researching cancer and family planning for my book Everything Changes, I’ve learned that adoption isn’t always an open door to acute or chronically ill patients.)

I try hard, and most often succeed, in feeling empathy for cancer patients who as a result of their disease cannot conceive or carry a child.  Though most often, I say to myself secretly, I wish we could trade reproductive systems so I would not have to worry about birth control.  I suppose this harsh but realistic thought is better left unsaid.  Though I do wonder if I am the only one out there thinking it.

The process of finding life beyond cancer has been a slow.  Young adult cancer enveloped my identity for years.  I’ve had an unusually complex case of thyroid cancer, one that has lingered and left me in limbo land.  I’ve had no medical threshold to cross that clearly indicated I was in remission, or that I was physically beyond cancer.  But even if I did, I’m certain I’d still have been confused about how to live beyond my cancer identity.

What I needed most was not a category in which to place myself; It wasn’t about ‘patient’ vs ‘survivor’.  What I needed was time.  Lots of time.  A few years time.

I started by taking baby steps away from the cancer community.  I forced myself to volunteer for causes having nothing to do with health care.  I made sure I was reading and writing about issues outside of the medical world.   I put an emphasis on talking to my friends about subjects other than my health, and tried to become more engaged in their world since for so many years the topic of phone conversations was my own cancer diatribe.

These actions were helpful in peeling away my cancer identity from my everyday life.  But they certainly were not enough.  It was not strategic actions or a new mind set about a post-cancer self-image that got me to my life beyond cancer.  It was something much more subtle.

I was not able to easily shed worry, fear, and hypervigilance about my health.  Instead they gradually became background noise that for the most part has drifted away.   I’ve needed to think of people with cancer as “others”.  I wanted to be a solo person and not part of the cancer club.  I had no agenda around any of this, but rather let it happen and was careful not to judge my own actions and distancing.  I did not intentionally choose when to say I “had” cancer.  Technically I’ve still got tumors in me.  But over time I think my mind had enough of being a cancer patient.  And I let the past tense slip out more and more.

Some days I wanted to morph like hell beyond my cancer identity.  Other days I needed to cling to it fiercely.  What worked best for me was just letting it happen knowing that everything changes.  I feel great these days just being Kairol Rosenthal, with no cancer label attached.  I think the process of moving beyond cancer is different for everyone.  For me I just had to remember, “All in good time my pretty, all in good time.”

The Internet is brimming with unauthoritative, mis-information about cancer, its treatments, and cures.  Some shoddy information is easy to spot, such as a clinically unproven diet trends.  Other information, like an intelligent comment from an experienced chat room moderator, can be harder to vet. Given the crap-to-value ratio of online information, I understand why doctors often head for the door when they hear from a patient the words “I read online…”

Getting doctors to pay attention to you can be challenging, especially when you are a young adult cancer patient.  Even the kind and caring ones are busy.  That is why when I visit a doctor, I ask questions based on information I know they are going to take seriously.  This information is usually from a medical journal or a respected organization such as The National Cancer Institute.  When I present this information, I print a copy for my doctor, I highlight the source, and I say, “I found this information from The National Cancer Institute” or “I read this JAMA article”.  Never do I use the phrase “I read online.”

When you begin screening your own online medical research through the eyes of a doctor, you too are less likely to zap your energy reading empty-promise cancer cures.  There is nothing wrong with indulging in fluffy stuff as a good cancer distraction.  Just stick to fluffy stuff outside of the cancer world (my favorite is Apartmenttherapy.com).  Save your online cancer time for worthwhile information that can actually impact your care plan and increase your knowledge of your disease.

Read a simple step-by-step guide to doing online medical research in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.