A Northwest Lens On Myeloma: Little Reminders
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 a heavy, water-logged coat 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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Mark's Photo For The Month
This photograph was taken on a recent 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.
Photo copyright © 2017 Mark Pouley.
Mark Pouley is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Reading your column, I felt like I wrote it. The hardest part at times is that as long as you are standing upright, people don’t understand what you feel like. Never can plan anything because you don’t know if fatigue will happen. And always hear comments like "You don’t look sick." To go anywhere I rest all day for maybe a 2-hour event. But I am in remission and am very blessed, but multiple myeloma is always letting me know it's with me.
Great column, Mark! I really appreciated your description of your fatigue as "wearing a heavy, water-logged coat all day." I can't imagine how tough that must be! My husband suffers from anemia and fatigue as well, and your description helps me be more empathetic to his exhaustion.
Tabitha
I've been in treatment for multiple myeloma for several months now and can really relate. The one that gets me, a byproduct of the fatigue, is that I'll sit for half and hour or more trying to decide to get up. I have no physical problem actually getting up, it's just making the decision. Maybe that's chemo brain.
I recognise this exactly. I'm exactly a year on from my stem cell transplant, diagnosed at age 46.
Although otherwise pretty much back to full strength I have pretty much had to give up work due to chronic fatigue, peripheral neuropathy and ongoing bone pain. I too have either Zometa or Aredia every month. and of course live with the constant enhanced awareness that the slightest sniffle could develop into something dangerous, and I've been hospitalised 4 times with infections and visited accident emergency with a temperature twice in addition.
That said, in many ways it's been a life-changer for the better because it caused me to take stock of what's important, and reorganise my life, changing a decade of working in a different country, only seeing my wife and four boys every 2 weeks, to one where I now only work part-time and can be a proper, almost full-time Dad. I love my life right now.
Best wishes for a lengthy remission!
Dear Mark,
Thanks for your column. You put words to my story, your description of the fatigue, the slipping thought capacity, the slightly diminishing strength.
I am 61, working a full time job with many responsibilities to the organization and others. I was diagnosed two years ago and, like you, I went through induction, the stem cell transplant, consolidation, and now maintenance. I feel lucky to be living a relatively normal life – most people have no idea that I have been sick, and those who do know, constantly tell me how great I look. And so I mostly wear my mask of denial, ascribing the changes and slippage to normal aging. Only a few know (my husband, my daughter) how scared I am of slowly losing myself. Will I have to retire early, downsize, give up my joy of exercising and living life fully?
Thank you so much for giving me time and more knowledge to reflect on this. Because through reflection I gain self awareness, strength, and acceptance.
Rebecca
Mark, your articles are very informative. I was diagnosed on June 29th after my kidneys were trying to fail. My first symptom I remember was bone pain in my legs and being so tired I couldn't get out of bed. I am getting ready for my stem cell transplant the first part of November. I try to take a nap every day and eat a good diet. I find it hard to remembers things too. Keep the informative articles coming. They help me so much through this difficult time.
Mark - I am a ten-year veteran of multiple myeloma. You accurately characterize the situation for those of us fortunate enough to tolerate the cancer and treatment side effects. We appear well, but we are not. Our strength is compromised but not immediately evident. We seem composed but a conditional wariness about "what's next" gnaws at us. Our sometimes goofy behavior is rooted in the disease, which others cannot understand. Consequently, I appreciate the interaction with other patients. Thanks for the excellent column.
You have perfectly described the struggle. Although I am not yet in the treatment stage for the myeloma, I also have degenerative arthritis pain and fatigue are constant. The "fatigue" is very much like the "water-logged coat". Your description reminded me of how I try to think of particular pains in terms of my former super-active lifestyle. I trick my mind a bit by looking back at all the fun times. The heavy, soggy ski clothes of a terrific day of skiing in very changeable conditions at Mt. Snow in the Winter of 1984. Then there was the restless, uncomfortable, achy sleep of the weekend camping trip at a Southern Bluegrass Festival in 1981. When my legs, feet and back ache all at once, I recall the same feeling after the biathlons, 5K road races, walk-a-thons, softball and basketball games, playing tennis, golf and many sailing adventures of the 1970's, 80's and 90's. Now when I begin to feel uncomfortable from sitting for long stretches, I remember the years of desk work, meetings, and seminars in the 80's, 90's and 00's, and more importantly, of the very special friendships forged from those workplaces. Life's memories have earned me many things, not the least of which are the great times and challenges beyond what was comfortable. Although the changes to me physically are a great loss, I have met the challenges in the past with success and have earned the joy and love of having shared those times with friends and family. Remembering is as necessary as breathing, thank you, Mark, for the inspiration of your thoughtful writing and beautiful photography.
Spot on, Mark. I was diagnosed January 2014, first treatment with CyBorD, which was relatively well-tolerated. For the last several months, I have been on maintenance Revlimid. Tired beyond description at times, with somewhat declining cognitive abilities, etc. But we press on, thankful for each blessed day, making the most of how we can serve others, grateful for those who continue to serve us, "enjoying every sandwich!"
I’m overwhelmed by all the comments. I’m happy I was able to verbalize what so many on patients experience, even when we are “good”.
A few of you responded with something that is so true and I didn’t include here. So many people that see me say “You look so good” this is obviously much better than the alternative, but it often comes with the incorrect assumption that I’m back to normal. They believe there are no loner effects of treatment or the diesese, no underlying threats.
As I said, I much prefer my current condition then some of the terrible suffering of my fellow patients, but this is a very curious position to be in.
Mark,
You expressed so well what it's like living with myeloma. My stem cell transplant was in 2013. I have been in remission since then. My diagnosis came as a result of a large, painful plasmacytoma in my sternum that protruded outward as well as inward. I have had no other lesions. I remain on Revlimid maintenance therapy, although at a very low dose. Even with the low dose, I have problems with fatigue, "chemo brain" and gastrointestinal side effects that require daily cholestyramine. The cognitive issues make me fear Alzheimer's. I try not to dwell on any of this, realizing there are so many others much worse off than I am. Besides, as everyone says, "I look so good!" Still, it's reassuring to know I am not alone. Thank you for sharing.
Dear Mark, thanks for writing this article, it really summarises so many aspects of this disease. I am sorry that you have all these reminders of the changes in your life since diagnosis. I share many of them with you, including 'you look so good'!
Thank you for this article that I can well relate to. I was diagnosed with kappa light chain myeloma in January 2016. I am six months beyond a stem cell transplant that put me in "near remission." I am on Revlimid maintenance.
Looking back on several years before my diagnosis, I recall a change in my "ambition." Once, at a yoga class, it occurred to me that "I absolutely hate this," but I formerly loved yoga and all exercise. From then up to now, I have been plagued with fatigue and lack of motivation and it is the absolute worst thing about the disease for me. The transplant gave me a second chance, but all I want to do is sit. People do not understand why I don't call them back--another thing that is so unlike my former self. I am on antidepressants but they don't seem to be making a difference.
Thanks for the chance to rethink all of this and try to find a solution. Very best wishes to you.
Shirley
I just wanted to say "Thank you so much, Mark, for your good article and the beautiful photo." Since I was diagnosed in August 2013 with a stem cell transplant in February 2014 followed by Velcade maintenance, I've made several life adjustments. Some things I've found helpful are: getting more sleep every night and having a leisurely morning routine (easier now that I'm retired), walking daily inside a mall for exercise, attending a gentle tai chi class, taking time during the day to listen to relaxing music, and taking short, day trips with my husband rather than tiring, long car rides. These are simple things and that has been a key for me as a patient trying to deal with a complicated disease. Thanks again, Mark, for sharing your thoughts.
Mark,
A really great column, as others have noted. You describe the persisting impacts of both multiple myeloma and its treatments so well indeed.
I want to remark on your replay to one of the comments. Yes, I too have been told over and over again how well I look now as compared to my appearance while in the depths of the disease.
And those who tell me that naturally assume that I am back to “normal”, when I am in reality very far from being so. I have all of the problems that you describe so well.
To close friends, I say “Well, thank you. I hope the way I feel catches up more woth the way I look, because right now I am still struggling.”
To acquaintances, I just say “Thank you.”
Thanks for this column, Mark, and being realistic about changes that have occurred during your treatments for myeloma. I can certainly see myself in some of them! I got into the habit of writing lists and notes about what I need, and like, to do. I know that many people write notes on their computers, but am still using pen and paper! I went through quite lot of time when I had to take catnaps during the day too. Have you ever noticed that dogs and cats do that too, and they don't worry about it! That is a lovely photo, and reminds me of views of the treetops from chairlifts when I used to go down hill skiing. Soon, the trees will be dusted with snow!
Dear Mark,
My father was diagnosed with multiple myeloma at the beginning of this year. I see what he is going through, and I admire him so much for his strength, as I admire all of you struggling with this unfortunate disease. I wish you all the force to fight and enjoy life! My best wishes! And thank you for sharing your experiences, it helps us better understand.