The first thing I learned about cancer fatigue is that, unlike other types of tiredness, cancer fatigue cannot be resolved with rest. What’s that you say? I can’t power-nap my way out of this?!!
I’ve lived a lot of my life in the fast lane. Actually, I was more like that guy in the zippy sports car that barrels through and around traffic. (Sorry.) I prided myself on being able to push through just about anything. Insane client deadlines with inherent all-nighters; no problem. Supporting 36-hour labors; I got this. Debilitating migraine headaches; meh, only down for a few hours. I resented sleep as a waste of time. It took me too long to learn and believe that sleep is a critical part of self-care.
What causes cancer fatigue? The top 5 causes are anemia, cytokines (small proteins that are released by white blood cells in response to infection or inflammation), pain, myeloma treatments, medications for other conditions.
My red and white blood cell counts still looks pretty good so the most likely source of my fatigue is “the straw that broke the camel’s back” issue of chronic pain and inflammation, with myeloma, its treatment, and bone pain now piled on. The peripheral neuropathy pain that took over my feet and lower legs a decade ago is relentless. I have opted to manage that discomfort with a mind-over-matter approach to avoid a medication solution that would come with undesired side effects. I’ve coped. I’ve pushed through. (The night I danced the first dance with my wife, my feet were numb and ironically felt like flames were shooting out of my toes as I focused on where my feet were in relationship to the floor … and my wife’s feet.)
My fatigue started becoming evident a few months before diagnosis. I thought it was a sudden twist (cruelty) of Nature when I passed into a new decade. Unbeknownst to me, my body was hard at work all day, every day trying to compensate for the effects of the houligan cells in my plasma. Plasma — that’s the stuff that carries energy-giving oxygen to all the moving parts.
Bone pain is a new-ish thing for me. It comes from the holes that myeloma is poking into my bones. It affects my skull, my shoulder, my mid- and lower-back. Soon I will start taking a bone strengthening drug. I’m not clear yet if that medication will make the bones resistant to myeloma hole-poking or if it will repair damage already done. I’ll learn more in time. What I know is that the pain is dull and low and ever-present.
I have some degree of fatigue most all the time now. At its worst, it feels like my motherboard has fried and I cannot boot up the system. Seriously, I have to think my way into commanding my muscles to move at times and I don’t do so lightly. Mostly, I work to acknowledge that my body is hard at work, and I let it have first dibs on all the energy it needs to carry on the work of healing from Myeloma. I’m favoring non-medical, self-care interventions for most side effects, including fatigue.
Take it easy. I set aside time to rest regularly. Once or twice a day I recline and even get in a short nap.
Conserve energy. I have always been driven by a calendar. Now I consult the calendar to budget my energy for the most important activities. Jackie and I keep track of the times when I feel my best, and we plan important activities during those times. And … I ask for help when I need it. I’ve also learned to say “no.”
Hydration and good nutrition. I drink lots of fluids, at least 72 ounces a day, and I’m using all the knowledge I’ve gained to eat really quality food and maintain my weight.
Movement. Moderate exercise is a great idea and I aspire to it. Though its my weakest link, I’m not giving up.
Integrative medicine options. I meditate and use other mindfulness practices for relaxation. I see my chiropractor for gentle body work regularly and I am about to add acupuncture and massage.
I have learned first hand that I cannot push through cancer fatigue. My best course of action is a form of falling back and sheltering. When I cannot bake 15 loaves of bread for the Food Bank, I bake 5 or even 3. When I cannot do even that, I let it go and prioritize physical activity that is most critical. Grooming is high on my list. The silver lining is that I spend 4 to 8 hours a day reading and writing.
I love the voice you are giving to your mission of RE-mission. Now that I have read so much of your beautiful writing, I understand more clearly what your challenges are. What a blessing to be able to read and write for 4-8 hours a day!! Thank you Rosie. Love you❤️