Survivor’s Guilt: Asking, ‘Why Me?’

Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020. Catch up on all of Karen's blogs here!

In July 2020, I was diagnosed with follicular lymphoma, a form of blood cancer that is considered treatable, but chronic and incurable. Following six months of treatment, I was declared NED (no evidence of disease).

Since then, I have done a lot of research on my own. I found a Facebook lymphoma page and an online support group — in-person groups which largely stopped meeting during the pandemic, when I was diagnosed — and learned significantly more than I ever wanted to know about cancer in general, and lymphoma in particular. One thing I found out was that while many people respond to the usual treatment, other people don’t — to the extent that some people go through not just one line of treatment, but several, and sometimes as many as six or seven.

One young adult I know through an advocacy group has been fighting a form of blood cancer for over a decade and has no hope of a cure; there are simply no more treatments left to try, and nothing has worked more than a short time during over a decade of active cancer and multiple lines of treatment. In contrast, when I had my post-treatment PET scan, and there was no sign of lymphoma at all, my oncologist said that he hadn’t expected it to work that well. It was a statement that still kind of bothers me; if he didn’t think it was going to work, why did he choose it? But that’s a topic for another time.

So, what makes some people resistant to treatment, and others responsive? Something like 75% to 80% of patients with follicular lymphoma have a complete response to treatment with their first line of treatment, while the rest have a partial response (some reduction in the amount of cancer present in the body) or no meaningful response. Why did I, a 58-year-old woman, diagnosed at 54, respond so well when someone else I know, about my age at diagnosis but male, went through seven lines of treatment before the last one — CAR-T — actually worked? Why has this young adult been sick for over a decade, and why can no one find a treatment for that young adult that will work?

I don’t know the answer. If I did, I would share it as widely as possible. What I do know is that there are days when I feel lucky to have responded to the first round of treatment so well, and to still be NED four years later. But some days I look around me at all the people who didn’t respond, and wonder “Why me?” Why, out of all of the people who have cancer — and especially those who have similar types of cancer — why did it work for me and not them? Why was I lucky? What did I do to deserve that? Why am I still cancer free after a relatively speaking easy treatment regimen, and others aren’t?

And then I wonder why I feel guilty at all. I didn’t choose to have cancer any more than anyone else does, and I didn’t choose to be someone who responded well while others responded poorly, or not at all. It all seems pretty random to me. I know people who would disagree — who would point to improved treatments, genetic predispositions, their belief in a deity and to the efficacy of their prayers, but none of that explains why the same treatment works wonderfully for one person and not at all for another.

I’m a single, childless adult; I’ve retired from a fulfilling career teaching middle school special education. There’s nothing about me that makes me more worthy or deserving than any other person; there’s nothing about the people I know who had far fewer positive outcomes that makes them in any way undeserving. I simply don’t understand the randomness of the universe, much less the apparent randomness of my survival. And some days that lack of understanding makes me feel guilty, simply for responding to treatment when other people don’t.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.