My New Normal After Follicular Lymphoma

What is normality? In particular, what is normality after a cancer diagnosis? After cancer treatment? When I finished treatment for follicular lymphoma (a form of blood cancer) not quite five years ago, people asked me how it felt to return to normal. But it wasn’t normal - nothing was normal, especially as the world was still mid-pandemic. Even now, things haven’t returned to the normal I had before.

So what is normal? Most people can trust that once they recover from an illness or injury, it won’t come back, but that’s not the way cancer works - and particularly for cancers like follicular lymphoma, which is considered treatable, but chronic and incurable. I will never be able to go back to a time when I could trust my body to recover from disease or damage; as things stand now, there is no cure. Then, too, treatment itself is a risk factor for developing other cancers. This could come back at any time, and while the chances are lower now that I’ve passed the two-year mark, that’s no guarantee. I know someone whose follicular lymphoma returned after 18 years of remission.

Then, too, between the immune depression caused by cancer treatment, which was exacerbated by the type of cancer (follicular lymphoma is specific to a type of white blood cells known as B-cells - commonly known for producing antibodies) and Covid, for which vaccinations had just been released when I was making my decision, I decided that returning to teaching middle school wasn’t in my best interest, and I retired two years before I originally planned to. My life will never be the same as it was before I was diagnosed, placed on medical leave, and retired early; the decision affected my retirement income permanently, because I have two fewer years of raises and of service credit, which reduced my pension. After a career spent teaching, mostly middle school special education students (26 of 28 years), it ended quietly; because of Covid restrictions, the district canceled the traditional retirees’ breakfast, and while I did attend a retirement celebration at my school, after a year spent either on medical leave or teaching remotely, it just wasn’t the same.

I lost friends following my diagnosis, friends who simply didn’t know how to respond, so they quietly vanished, mostly never to return. Between retirement and pandemic restrictions, I’ve had difficulty finding new friends to replace them, so my social circle has retracted somewhat. Recently, I’ve tried to find new activities, but it’s harder than it was when I was younger; I don’t have kids to meet people through, and while there are plenty of retired people in my neighborhood, most of them are 10 or more years older than I am, and mostly they don’t share my interests.

Some things didn’t change; I still train in TaeKwon-Do, a Korean martial art, and after a 15-year gap in my testing schedule, I successfully tested for my VI Degree Black Belt. I still walk a lot (although I did injure myself testing; at 58, keeping up with my friend who was also testing, and who was 37, was really, really hard!), so I don’t walk as much as I used to, and I haven’t been hiking. I still read a lot. I do a lot of crocheting. But I miss the life I had, and I regret the reason I retired early. So I have a new normal, but I’ll never know how it compares to the normal I would have had without cancer.

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

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