Managing Longterm Fatigue After Blood Cancer Treatment

To manage fatigue following blood cancer treatment, it’s important to understand what fatigue is.

It’s been at least three years since I had CAR-T cell therapy for multiple myeloma, and the fatigue continues to envelop me like clothing. It is difficult to define, as it’s not normal ‘tiredness.’ A nap doesn’t resolve it. In fact, lots of sleep doesn’t fix it.

Fatigue is one of the most common side effects of CAR-T and other blood cancer treatments. It’s been known to plague patients for weeks, months, or years following the treatment. Each patient recovers in their own time.

The early days of recovery

I recall the fatigue beginning after the lymphodepleting chemotherapy I was given prior to CAR-T. That was the start of something I still feel today. I became so tired and weak.

Following the CAR-T treatment process, my bone marrow was recovering. My immune system was rebuilding. I was healing from a hospitalization and a list of complications.

I was anemic. I wasn’t hungry. I couldn’t stand by myself. All I wanted to do was walk across the room alone. A myriad of symptoms was knocking me down. I felt like I was in a hole and trying to climb out.

Learning to pace myself at home

I spent a few weeks in a rehab center before returning home to the farm. It’s there that I learned to prioritize my activities and make my movements count. Once home, I learned to break larger activities into smaller ones. I would do work around the house and then sit down.

I recall it being monumental when I could cook a whole meal for my husband and me. It was exhausting!

My husband had to lift my legs onto the bed at night. He assisted me to sit up in the mornings. I remember a shower being so wearing.

I increased my activity around the house. I always knew when it was time to stop. I was easily exhausted. I would sleep for long periods of time, but I still felt oh-so-tired. It was a tiredness clear to my soul. I knew I had to limit my daytime napping, but I just HAD to lie down!

Navigating shifts in daily life and routines

So many things changed for me during this time. I struggled with my appetite. I could not get enough water. I went from being an avid coffee drinker to drinking none. (My love for coffee has since returned... lol).

For a while, I remember not being involved in things outside of my home. My neighbor would come to read to me. Friends checked on me often. My husband and kids encouraged me along the way, pushing me a little further each day. A little more housework. A little more cooking. A little more exercise.

Where I am years later with fatigue

Today, I still battle with fatigue. I am reminded as I write this article of how far I have come. My husband tries to describe the difference in me. I now exercise more often, but the progress feels so slow. I still have difficulties with standing for periods of time. I find myself being cautious of going where I must climb stairs or walk far.

I go out for coffee with my friends. I attend church and Bible study each week. My grandkids are with me for church and then for a visit to the farm. I find that time with them brings me to life. I suppose I just don’t think about what’s ailing me when they are near.

In some ways, I am back to life. The fatigue still lingers lightly. The words ‘keep pushing yourself’ tend to make me angry, but they probably are responsible for where I am now!