When I was diagnosed with multiple myeloma, I wasn’t experiencing any obvious symptoms of the disease. I’ve also avoided substantial side effects from treatment. Even so, I am impacted by the disease and treatment, and I thought it might be useful, especially for newly diagnosed patients, if I shared my experiences.
For much of my adult life, I’ve had “back issues” so I didn’t really think much of the back pain I was experiencing prior to my myeloma diagnosis. I’d noticed a dull ache in my thigh, but again, it wasn’t enough that I worried about it.
After my diagnosis, a full body x-ray and MRI revealed that I had minor lytic lesions on my left femur and a single plasmacytoma in my vertebrae. Shortly thereafter, I suffered a compression fracture of a vertebra. I avoided the debilitating pain often associated with compression fractures, although there was a period of significant discomfort for a month or so.
As a result of the fracture, I am restricted from lifting anything over 15 pounds. That takes some getting used to, and I’m not very helpful around the house. I’m receiving Zometa (zoledronic acid) infusions once a month trying to combat any additional bone loss. I find I get especially tired on the day of infusion, but otherwise I don’t notice any real side effects of the drug.
Concurrently, I’ve lost significant strength, especially in my upper body. The combination of medications and inactivity during my transplant caused serious muscle atrophy. Following the transplant, a physical therapist gave me some light weightlifting exercises to perform. I’ve countered the loss in range of motion, but I’m still very weak compared to my pre-transplant self. More diligence to daily exercise should help, but I fear I will be weaker as long as I’m in treatment.
The most substantial effect of continued treatment I notice every day is fatigue. From the time I get out of bed to the time I return for the night, I never feel like I have full energy.
Fatigue is not just being “tired” or needing a nap. No amount of sleep helps. Fatigue is like wearing heavy, water-soaked clothing all day. My body feels weighed down. I’m slow to move, I’m slow to get up, and I feel worn out sooner than I should. My legs are heavy and I’m always eager to grab a chair when I get the chance. Worst of all, I feel as though I’m in a fog most of the time.
I don’t have any advice on how to combat fatigue. I find I merely deal with it. I’ve been told that exercise will counter the effects. Honestly, I’m still not exercising as regularly as I should or would like, but when I maintained a better health regimen, I didn’t feel the fatigue decrease; it just came at different times.
I’m now very slow to start in the mornings. What used to be my most productive time in the office, before all the interruptions, is now taken up by me just trying to get ready for the day. My body nearly always demands a lunchtime nap, though I never feel “refreshed” after. By 4 p.m., my productive day has ended. Of course, the effects of fatigue on my brain are complicated by the almost mythical “chemo brain.”
However, chemo brain is no myth. Doctors recognize it as a real effect of chemotherapy, using fancier terms like “post-chemotherapy cognitive impairment.” What makes it difficult to describe, and deal with, is that it manifests itself so differently in every patient, and it can be confused with common effects of aging, or being tired, or just being busy.
I notice my impairment most when I end up “word searching.” Very often I just can’t pull up the right word to finish a thought. When that happens, I slip into charades or offer clues in hopes the person I’m talking to can guess the word I’m thinking of. It might be funny if it didn’t happen so often; many times I’m talking to people who don’t know my condition or understand what is happening. I’ve always been poor at remembering new names, but now I can be staring at someone I’ve known for years and simply draw a blank.
I like to think I was once a champion multitasker, but post treatment I’ve lost the title. While I can still move from task to task, I will occasionally forget something I was doing, fail to get back to it, and as a result, fail to complete the task.
I understand the condition is often temporary, but since my treatment is ongoing, perhaps for years, I wonder if I’m just going to have to adapt to this as another new “normal.” I’ve started to rely a lot more on keeping reminders on my phone, writing notes to myself at work and leaving them on things that need attention, and slowing down a bit during conversations to give me time to process words and thoughts. I’m trying to adapt the best I can now that I can predict the effects with some certainty.
A last issue that impacts nearly all multiple myeloma patients is our suppressed immunity. Like a child, I can catch a sniffle or cough from anyone. And when I do get a “minor cold,” it lingers well beyond the expected duration for an adult. I’ve been to urgent care three times since my transplant to make sure a cough or fever wasn’t a sign of a more serious ailment. It never was.
With a compromised immune system, bone issues, and other concerns comes an inevitable paranoia. Will this runny nose or scratchy throat lead to a bronchial infection or pneumonia? Is this new ache in my back from sitting too long in the car, or is there a more sinister cause? The paranoia decreases over time, but it is never gone. I suppose it will be more serious again if my myeloma numbers start to creep up.
I count my blessings because I’ve avoided some of the more serious and debilitating impacts of this cursed disease and the accompanying treatments. I have the greatest respect and sympathy for those suffering so much more than I.
Still, even the smallest symptoms and side effects we face do change our lives. They are constant reminders that multiple myeloma is real, and even in remission, it impacts us daily. We must adapt, and not let it win, but it is there, our constant companion, and it does no good to ignore it.
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Photo Credit (c) 2017 Mark Pouley
This photograph was taken on a trip to eastern Washington, on the peak of Bridge Creek pass, looking to the horizon. From here you can see the immediate beauty of the woods, but the hills and woods seem to continue infinitely. From where I stand today, I know there are hills and valleys to come, but the nature of the changes are a bit hazy and seem to go on forever.