Published on September 10, 2018
I’ve got a new “mission statement”: If I am too tired to get my power walking miles in, I need to tell my doctor. If I just don’t feel like doing it, I need to get off my butt and go get it done. There’s a difference between not being able to do it and not wanting to do it, and I need to be mindful of the difference. Why? Because I have been making excuses.
Eight-and-a-half years ago, I was diagnosedwith chronic lymphocytic leukemia (CLL). I went through watch and wait, bone marrow biopsies and a clinical trial. I achieved a very deep remission, the coveted minimal residual disease negative status and became a passionate patient advocate for Patient Power. I’d like to think that I became one of the most educated CLL patients that there could be. I learned a lot about my particular instance of CLL and had the opportunity to regularly interact with a cadre of recognized experts in research, skilled and gifted clinicians, caregivers with the patience of saints and a broad array of CLL patients with a truly massive range of experiences. Clearly, I had an inside track to this CLL thing and I was in the best possible place to recognize changes so that I could keep my medical team in the best possible place to deliver excellent care. Except I sabotaged myself.
I believe the term that I am looking for is “self-delusional”. I know what symptoms are associated with CLL, I know how the disease progresses for many and I know what to look for, yet I purposely ignored that progression in my own self. I was taking more naps. No big deal. I’m getting older, right? I was finding excuses to not do my regular exercise—okay, a LOT of excuses. My lethargy was giving a bold assist to weight gain. Some swelling in my neck and armpits. No big deal. I’m getting older, my body is changing.
I showed up bright and early for the blood work at MD Anderson Cancer Center on July 18th. Regular checkup. Witty banter with the phlebotomist, a chat with a patient who recognized me from one of the Patient Power events, then my name was called, and I went into the clinic. Standard evaluation questions. “Doing great, feeling good. Maybe a little more tired than normal.” I was asked if I had been having night sweats. “Nope. Not since treatment, six-and-a-half years ago.” Dr. Keating came in. He asked if I had been having night sweats, and then told me that I was no longer in remission. “You are now relapsed.” Everything hit me all at once. Well, of course I was. Fatigue equals lethargy, and lethargy equals weight gain for me. I was at my peak weight when I was diagnosed, had gotten down to my comfortable weight after treatment and was now almost back at my peak weight. Getting bigger, all those naps, swollen lymph nodes. Of course, I had relapsed.
Now, I am putting my inside track to work. I am back to power walking every morning—it will put me in a much better place for when treatment is neededand give me back some energy. I’m paying attention to my body. I’m in watch and wait and I will be vigilant. I will not be self-delusional. I have a chronic form of cancer and each and every day brings new advances in treatment that may one day cure me. Until then, my medical team and my home support team can help me have a truly fantastic life; attending a Formula One race, a Bruno Mars concert, a Britney Spears concert (yeah, all three of those in one weekend!), more travelto new and interesting places, brewery 5K races (I walk!) and cracking open those bottles that I’ve saved for a special occasion (Tuesday is special!). Dr. Keating will let me know when it’s time to treat again. I have plenty of livin’ to do, and I intend to do it very well.
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