Living With Follicular Lymphoma: Hitting Milestones and Beating Anxiety

There are lots of milestones in life, lots of special occasions that people either celebrate or mourn. Certainly, I mourned six and a half years ago when I was diagnosed with follicular lymphoma, a form of blood cancer that is considered to be very treatable, but chronic and incurable.

Like many people, I considered cancer to be a death sentence, or at least that treatment would leave me severely and permanently debilitated; certainly, it’s often portrayed that way in the news, and, even more, in ads for various medications and fundraising for various cancer-related charities and facilities, which often focus on the negatives to inspire people to use their product or donate to their fund. I get it; it’s the way such things work. But at the same time, it creates a sense of dread, of finality, the idea that no matter what, nothing will work, or at least, nothing will work well enough. That the whole point of the medications and the fundraising is to limit debility and death from cancer seems to get lost in the messaging.

So, when I started looking at other milestones, I looked through a different lens. Like so many other people, I have some form of a bucket list, and my first thought was that there were so many things I would never do; either I would be too disabled to do them, or I’d be gone, my goals unmet. Happily, I was proven wrong.

Since then, I’ve completed a few items on my list. Several years ago, I visited India, on a safari tour through multiple state parks. I’ve renovated my house — a project that, like many similar projects, went wildly over both the estimated time and budget, but now that it’s done, it’s wonderful (except that I’m still putting things back in place months later — but that’s my fault). I adopted a new dog, who is absolutely delightful. These are all things I put off either because my health wouldn’t allow them at the time, or because I was afraid I would be unable to finish them once started; why bother with renovating the house, for example, if I expected to die from cancer before the renovation was completed?

Then, too, this week I had one of “those” birthdays — what my aunt likes to call speed limit birthdays, a number ending in a multiple of five. When I was diagnosed over six years ago, I never expected to reach this birthday; even in the last week or two, I kept expecting something traumatic to happen, to prevent me from reaching this milestone. Happily, my anxiety was proven incorrect.

Even so, even as life moves on, milestones come and go, the anxiety remains. There’s always that underlying fear that the cancer will come back. But at least now I’m looking forward instead of back.

Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020, considered to be highly treatable, but chronic and incurable, which is currently in remission. She is also a fifth-degree black belt in TaeKwon-Do, and is the assistant instructor of a TaeKwon-Do class. She enjoys working part-time with special education students, crocheting, walking, indoor rock-climbing and talking to and petting any dog she sees.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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