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Myeloma Dispatches: Dealing With Denial
By: Maureen Nuckols; Published: June 14, 2017 @ 6:34 pm | Comments Disabled
Two weeks ago, I was on top of my game. I was training for a sprint triathlon, joined a masters swim team, and participating in a strength class.
A little history: I have been a participant in the Roaring Fork Women’s Triathlon Team for 18 years. We meet twice a week, in the summer, for coaching and training. For me, it is my adult summer camp. Besides, this team has been phenomenally supportive to me through the ups and downs of my disease. I was particularly excited about the upcoming summer because I am not sick, not anemic, not even immunosuppressed. This will be my best summer ever, I thought. My attitude: Seize the day!
Then it came time for me to return to treatment. So what if this was the first time in two months for the six-hour infusion protocol? I enjoyed two months off all drugs for multiple myeloma. I was celebrating a new remission. So what if I was trying to balance a treatment day with an ambitious training schedule? So what?
Over and over, I have to learn that denial works only for a little while. Sometimes when I’m working out with my fellow triathletes who are in their fifties and sixties, I deny that I am 72 years old. Sometimes when I am swimming alongside masters’ level swimmers, I forget that I have always been slow, even when I was younger. I forget until I am in the midst of the infusion that six hours of four kinds of drugs is really hard on my body. After only a two-month recess, I forget that my older body just takes longer to recover from treatment. .
Last month, when I visited the myeloma specialist, he told me that my IgA was climbing again. The good news is that all the other myeloma markers were still in the normal range. Plus my white blood cell count, red blood cell count, and platelet count were all normal. Yet, he recommended that we begin treatment again with a monthly dose of Darzalex (daratumumab) with steroids. “Maureen, you were in bone marrow death last fall, and we don’t want to return there.”
This comment broke through my convenient denial. Without any symptoms, I pretended that I did not have multiple myeloma. Temporarily, I forgot that I underwent an aggressive treatment protocol for my disease from September to March.
Still in the midst of my blissful denial, before my first infusion, I swam with the masters swim team for an hour and half. Then for six hours, I slept in the infusion chair sedated by Benadryl (diphenhydramine). The infusion team wanted to ensure that I didn’t have a reaction to the Darzalex, so instead of oral Benadryl, I received it intravenously. The intravenous Benadryl really sedates me. I didn’t experience any infusion reaction that day. However, the next day, I had mild asthma symptoms with coughing spasms. I still managed to go for a short bike ride. The following day, I completed a fast, four-mile fitness walk with the triathlon training team.
Yet, reality became a cruel teacher. On my fifth day of biking, swimming, and fitness walking, with an infusion day in between, my body betrayed me. The evening after the four-mile, fast-paced walk, my back went into painful spasms. Back pain is a new and miserable experience for me. I had to stop what I was doing.
Fortunately, I have a good relationship with a physical therapy clinic because of my many fractures over the years. After a thorough assessment, I had answers, none of which I liked. One, my gait is crooked because of an old knee injury. Two, I have almost no core muscles, so when I swim, bike, powerwalk, or lift weights, I am overusing my back muscles. The consequence is back pain.
What I didn’t want to hear is that my aging body is part of the equation. I am not 50, or even 60, years old. I am 72 years old. The new remission seduced me into denial. I didn’t want to hear that the multiple myeloma and different lines of treatment over the past six years have left me with a vulnerable body. I have been going too hard, too fast, and too much. My body crashed and got my attention with pain.
Right now, I am following physical therapy orders, decreasing my training to walking and swimming. I dropped out of the strength class, I am skipping masters swimming, and I am missing my triathlon training for a minimum of one week. Every day I perform a regimen of exercises to build up my missing core muscles.
When I return to the triathlon training, I will be cautious and listen to my body. I promise, I will schedule more rest days.
For my next monthly infusion, I plan on two days to recover, with minimum expectations for myself. The oncologist will be prescribing a different, non-sleepy antihistamine for five days to prevent another airway reaction.
I am grateful that I am still in remission. I realize how much I enjoy the social part of my triathlon team. I realize I don’t have to go any faster to be with my friends. They accept me for who I am. I feel grateful that I can still participate in this sport I love.
Once again, I learned that denial really is limited in its usefulness. Real life is much more adventurous.
Maureen Nuckols is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here [1].
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