Erroneous expectations of a treatment’s efficacy fuel my anger

Note: This column describes the author’s own experiences with Brukinsa (zanubrutinib). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

I was angry, but I didn’t know why.

Last week, I went for my first checkup since I began taking Brukinsa (zanubrutinib), which is designed to treat the underlying cancer that causes cold agglutinin disease (CAD), and I was expecting great things.

My doctor told me I looked great. But I didn’t feel great. I noticed a distinct tiredness as I made my bed or did housework. I was feeling short of breath and had to sit and rest as I moved from one place to another. Chest pains and breathing problems have long been familiar companions and a signal that my red blood cells are breaking down, a process called hemolysis.

After I left the appointment, I wrote to my daughter: “Maybe I am just used to being sick.”

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Why am I so angry?

I tried to pinpoint the focus of my anger. I wanted to be angry with the doctor, but it didn’t have that resounding ring of truth when I considered it. I continued to think, knowing that it’s a whole lot safer and less destructive than giving way to the terrible forces of a temper tantrum.

I began to research how to determine the source of my anger. One thing I learned is that unfocused anger is common and a normal, protective signal, but lowering its intensity enables a person to respond and address what is feeding it. I was on the right track.

Then I looked into coping mechanisms — how to handle this anger instead of giving in to it. I learned that acknowledging my anger regulates my nervous system and ushers in a sense of calm and balance. By writing about my anger, I can feel my shoulders relax, and my breathing slows down ever so slightly. I’ve been trying to focus on my breathing, mostly by using the 8-4 method, where I breathe in through my nose for eight beats, and then exhale for four beats.

My laboratory report showed my various blood values are not moving in the right direction. I’ve been taking Brukinsa for six weeks. Then I realized I hadn’t checked to see how long it would take for it to begin to work. I learned it takes 2.8 months on average to have an expected response. The source of my anger was my own erroneous expectations.

I leave E.G. Bella to sum up my feelings: “Waiting is hard [and] … I’m faced with two choices. I can either rush and plow ahead, trying to make my goals and dreams happen in my own time. Or I can surrender my own agenda and trust God with the timing, knowing that He knows best, and that He’ll bring the best possible outcome when the moment’s right.”

Note: Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.