Auburn isn’t sticking to the plan, but I am as I battle CAD fatigue

I frowned and turned off the Auburn Tigers versus Kentucky Wildcats football game. One set of downs was all I could manage.

I find myself this year too emotionally vested in Auburn football and have forced myself to avoid it to lower my stress.

Auburn is known as the Cardiac Tigers due to their often playing to the last seconds of a game before the outcome is known. The team recently parted with Hugh Freeze, its head coach of three years, after another close game. Did they not have enough information to make a good decision when they made the hire? I have to ask. I’ve been asking that question about myself, too.

I’m not sure I made a good decision in August when I elected to postpone an October checkup to monitor the progress of my cold agglutinin disease (CAD). I decided to hold off based on the information I had, but now I’m thinking that, like Auburn University in 2022, I didn’t have enough to make a good decision.

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Hindsight on the field and in the blood work

In June, I traveled from my home in Indonesia to my home in the U.S. to see my hematology oncologist. I expected to return shortly after the Fourth of July, but my doctor ordered a bone marrow biopsy. What did he see?

Mary Lott’s daughter and Toomer’s Drugs assistant manager, Gail Bullard, holds the crystal football trophy from 2010 and happier days for Auburn University football. (Courtesy of Gail Bullard)

My hemoglobin was about 9 and my IgM count was elevated. I thought I’d be given more information after the biopsy, but I was merely told everything “looked good” and I should come back in October — a fairly standard answer that told me nothing.

I needed more: specific values about the biopsy. I asked why the doctor wanted me back in October. I was told the decision was up to me.

My last treatment was a series of rituximab and bendamustine in 2021. I’ve seen all the blood work since then and have been confident in the nine-to-12-month checkup schedule.

So, given that my blood values looked good and that 50-hour travel around the world is exhausting, and since I would return around New Year’s Eve for my father’s 100th birthday, I decided to wait until December for my next checkup.

I’m second-guessing myself now because I’m so fatigued that I can’t get out of bed and walk through my garden. If I’d known more, maybe I’d have kept the October appointment.

By Saturday, it became clear my CAD-related fatigue didn’t benefit from two days’ bed rest. My husband, Mike, and I went to a small Christmas market at the school where he teaches, but I managed to get to only three booths before my fatigue overtook me.

I pressed on, however, but things got worse. I managed to look at a small selection of Christmas ornaments and an assortment of decorations when more symptoms developed. I began stumbling and feeling dizzy. I reacted to the scents in the air and became nauseous. Sweat beaded on my forehead and rolled down my nose. My husband helped me leave.

I’m sure when the head coach was hired, Auburn’s administration gathered all the information and resources available to them and made the best choice they could. Sadly, it wasn’t a good fit. The same day Freeze was fired, I rethought my own decision to postpone. Maybe I should have been checked out again.

But unlike Auburn, I’m not changing course. I’m sticking with the plan for late December. I am stubborn like that.

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.