Last week’s installment of This American Life focused on people who take a long time. There was the guy who took 17 years to marry the love of his life. There was the writer who waited since childhood to publish a certain story. And there was the author Katherine Russell Rich who has been living with stage IV breast cancer for 18 years.
I can’t pretend to know what it is like to have metastatic breast cancer, never mind what’s like to live 16 years longer than the oncologists expected. But I do know what it’s like to take a long time with something.
It has taken me a long time to recover from cancer.
I am not talking about healing from radiation or having my incision scar stop hurting (it never has). I am talking about coping with the emotional and existential fallout that comes from having a cancer bomb go off in your life.
That part takes a long time, but I didn’t know that when I got diagnosed with breast cancer at 32. My doctors warned me that chemotherapy and radiation would be miserable. But no one told me that adjusting to life after cancer would be just as hard.
In the first year after of treatment, cancer continued to infiltrate my life. I remained in chemo-induced menopause for months. I sat in my office wondering why I left my baby at home when I might not live to see him enter kindergarten. I watched friends plan second pregnancies and career moves, and I felt adrift. I couldn’t plan past my next cancer screening.
I tried to share some of my fears with friends, but even the most well-meaning were perplexed by the persistence of my worries. They would have known how to counsel me through divorce or infertility, but cancer wasn’t on their radar yet. I felt kind but gentle pressure to move on. It was as if there were a shelf life on my cancer experience, and it was fast approaching expiration.
So I did what every young survivor yearns to do: I found other people who get it. I sought out lectures and workshops designed for people my age, and it was a revelation.
I heard Page Tolbert, a social worker at the Post Treatment Resource Program at Memorial Sloan Kettering, explain: “People think of getting a cancer diagnosis as a crisis. Sometimes the treatment itself is a crisis. But people don’t often acknowledge that the end of treatment can be a crisis as well.”
This is especially true for young survivors. Oncology social workers who treat us have identified a common theme: young people tend to summon all our strength to sprint through treatment. We are in such a hurry to regain our “normal” lives as soon as the radiation burns heal that we are caught off guard by the intensity of emotions that hit us as soon as we slow down.
One of the young survivors I spoke to said that even though he went through a brutal regime of chemo and radiation for nasopharyngeal cancer at the age of 28, he still thought the first year out was worse than treatment itself.
“When I got my scan and I was clean, it was the happiest day of my life, but it was horrible, devastating. People don’t understand that. It was a huge letdown. Everybody didn’t want to deal with it. The moment I was clean was an excuse not to talk about it. My soul still had cancer, and I wasn’t getting treatment for it.”
Young people’s skin and bones heal quickly, but it takes awhile for our souls to mend. It can take even longer if our loved ones don’t understand why we aren’t moving along faster.
That’s why I decided to write a book about life after cancer for young people. And that is what I will be blogging about a lot here: how cancer continues to shape our lives long after the port comes out, our hair grows back, and our friends think we are better.
There is no way to avoid the pain and confusion that descends at the end of treatment. Yet knowing you are not alone can help you cope. Almost all the survivors I have spoken to said the best remedy they found was connecting with other young survivors.
Because we understand that taking a few years to rebound from getting a life threatening illness in the midst of your youth isn’t so long after all.