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Mohr’s Myeloma Musings: Don't Let Fatigue Make A Coward Out Of You
By: Steve Mohr; Published: April 21, 2015 @ 5:03 pm | Comments Disabled
In my March column [1], I wrote about starting a new chapter in my multiple myeloma book – maintenance therapy.
I started out with 10 mg of Revlimid [2] (lenalidomide) per day in a 21-day cycle, without dexamethasone [2] (Decadron). I very much welcomed the elimination of dexamethasone, as I experienced wild mood swings and serious insomnia during induction therapy. The fact that the neuropathy I suffered from Revlimid during induction therapy (15 mg per day, 21-day cycle) was tolerable made me optimistic that good things were in store for maintenance therapy.
A week into Revlimid maintenance, a rash broke out over my entire back. Treatment was stopped immediately, and the rash was treated with hydrocortisone valerate cream. Within a week, the rash was gone. The Revlimid dose was reduced to 5 mg per day, and I have had no reoccurrence of a rash anywhere.
Two weeks after starting the reduced Revlimid dose, I started experiencing fatigue. I was puzzled because the only fatigue I had experienced during induction therapy was dexamethasone induced. Was it a delayed effect from my autologous stem cell transplant, which occurred ten months ago? My doctor had told me that was a possibility.
Remembering my New Year’s resolution to become more educated about multiple myeloma, I researched cancer-induced fatigue. Like most people, I saw "tired" and "fatigued" as the same thing. However, I learned that they are not the same. Being tired is being drained of energy and strength – feeling a need to rest or sleep. A good night’s sleep cures being tired.
In my research, I also found a quote from Dr. Martha Jane Poulson, a Canadian doctor who suffered from various illnesses, including breast cancer, that I thought was very revealing. Before dying at the age of 49, Dr. Poulson noted that fatigue for a healthy person is not the same as for someone afflicted with cancer. She wrote "The deadening fatigue which invades the very bones of cancer patients is totally unlike the most profound fatigue of an otherwise well person."
When healthy, one can feel different types of fatigue. I remember the physical exhaustion from a tough practice or workout during high school and college. When healthy, one inevitably always catches a second wind. My daughter, a successful collegiate distance runner, has often talked about the "endorphin rush" after a long, hard run. I used to take a macho pride in stringing together two or three 18-hour work days when the situation demanded it. That fatigue was always washed away with an ice cold brew, followed by a long hot shower and a good night’s sleep.
The fatigue I experienced at the beginning of Revlimid maintenance was equal parts physical and mental. I was in bed most nights by 8:00 p.m., four hours earlier than normal. I lost a certain degree of zest for life. While I continued to do everything I have always done in regards to work and family, I had little enthusiasm for anything. Most days, I felt that I would be perfectly happy to be sitting on the sidelines. The idea of sitting and doing nothing was very attractive.
After about two weeks, my wife asked: “Is this what the rest of your life is going to be like?” Clearly it was time for a reality check.
A favorite message I used with my teams during my 29 years of coaching basketball was: "Don't let fatigue make a coward out of you." When basketball teams get fatigued, they make costly physical and mental errors and, eventually – without even knowing it – give up.
I was performing like a fatigued team, getting to the point of almost giving up. Without even realizing it, fatigue was turning me into a coward.
As a result of my wife’s pointed and alarming question, I immediately changed my whole approach to dealing with fatigue.
When a wave of fatigue hit me at work and I had a difficult time cognitively, I changed tasks. I visited teachers in their classrooms, mingled with students in the halls, or simply went for a walk in the woods located on our school campus.
At home, I resisted the temptation to immediately plop down into my chair upon arriving home from work and sit there for hours before going to bed. Spring has been here for weeks in Ohio, and there is plenty of physical work to do around the house. So I started working around the house. I also have taken up playing golf regularly (with my son) after a 20-year break. Long walks in the evening are now a part of my daily routine
A factor I failed to consider in what caused this sudden period of fatigue was stress. Research suggests that stress can bring on, or worsen, certain symptoms or diseases. I realize now that I was dealing with some of the most difficult issues I have ever been confronted with in my job when fatigue was controlling my life. The resolution of these issues coincided with my new approach, and I am convinced that helped ease the intensity of the fatigue.
The result of this change in approach has been significant. I am far more efficient at work, my family life is better, and I have a far more positive approach about the future. Make no mistake, fatigue still exists. However, the difference is that I am managing it. It is not controlling me.
By no means am I suggesting that this approach would work for everyone with multiple myeloma who experiences fatigue. The heterogeneous nature of multiple myeloma confirms that that is not the case. As I have stated many times in previous columns, I am fortunate that my challenges with multiple myeloma pale in comparison to those of many afflicted with the disease, and that is also likely the case with the fatigue I've experienced.
But, for those of you who do suffer from fatigue that isn't extreme and truly debilitating, perhaps a change in approach might be all that is needed to manage this bothersome symptom of the disease and treatment side effect.
Steve Mohr is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here [3].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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URL to article: https://myelomabeacon.org/headline/2015/04/21/mohrs-myeloma-musings-dont-let-fatigue-make-a-coward-out-of-you/
URLs in this post:
[1] column: https://myelomabeacon.org/headline/2015/03/19/mohrs-myeloma-musings-a-new-chapter-maintenance-therapy/
[2] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/
[3] here: https://myelomabeacon.org/author/mohr-steve/
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