How one dumb move led me to more caution with my healthcare
The momentary slip that spiked my cold agglutinin disease for months
My phone started ringing about 8:15 in the morning. I knew who it was and why he was calling. A wry smile was on my face as I answered it.
The Spencer Cancer Center in Alabama makes laboratory results available to patients about 36 hours after a blood draw. This schedule gives physicians time to see the findings while empowering patients by providing them a mechanism to understand their treatment progress. I like that. I’d been expecting this call since I saw my test result numbers earlier that morning.
I was hoping his nurse would call. When a nurse calls, results aren’t so serious. When a doctor calls, it isn’t good.
Dr. Smith was still reassuring and thorough in his explanations. He always has been. When I was diagnosed with cold agglutinin disease (CAD), he said I’d die with this disease, rather than from this. In other words, CAD is manageable. He also made recommendations tailored to my lifestyle. My husband and I travel a lot, and he knew I was expecting to leave the country soon. He wanted me as healthy as possible so I wouldn’t have a health emergency overseas.
Dr. Smith recommended a cycle of bendamustine and rituximab. This treatment is standard for someone who’s received rituximab six months earlier. I fit into that category.
That fateful decision
My second cycle of rituximab was in December 2020. At that time, I went for weekly infusions right up past Christmas. I didn’t notice much improvement in activity immediately afterward; after all, the holiday period has exhausted me for decades! But in the following spring, as the sap was rising in the trees and earthworms were rising in the ground to be food for the robins, I began feeling more energetic than I had for years!
An azalea, one of the spring plants in Mary’s garden in Papua, Indonesia. (Photo by Mary Lott)
In late January 2021, with my mouth covered by a scarf, my hands and feet in gloves with chemical warmers, I planted 280 long-leaf pines. Wow! Where did that energy come from? In February, I continued planting some azaleas and camellias in my long-neglected garden. Then, joy of joys, three of my grandchildren came to visit. We worked outside, played outside, and enjoyed barbecues ending with s’mores.
One gorgeous, warm day during that week, we went to the nearby Chewacla State Park to fly kites at the top of the hill. Even I could run with the kites to get them launched. I hadn’t felt that well in a long time.
After a time, there was some discussion about hiking down the hill, over the rocks to the creek below. I hadn’t done that since college. But why not? I’ve always enjoyed hiking when I could. So off I went with two grands and a son-in-law trailing in my wake.
Chewacla trails are neither easy nor too difficult. The one from the top down to the creek went over some rocks, through the woods, and ended in a waterfall formed by a dam. Once down at the waterfall, we decided to hike upstream along the creek, which feeds into a lake, before winding up at the playground area next to the lake. To get there, we’d have to cross that creek.
The hike around was not at all difficult. It was fairly flat. But I’d forgotten how long it was. We hiked and hiked and hiked. But there was no good place to get across the creek! So my son-in-law and I decided to wade through a shallow point and carry the two kids over.
As soon as I stepped into the creek, I knew I was in trouble. The water was very cold. I slogged through. After scrambling up the bank on the other side, I took my sneakers off because they were too wet to help my feet get warm. Barefoot was better.
The aftermath
As spring progressed into summer, I could tell I’d damaged my red cells. The pep was gone. I had to rest more. I had trouble singing hymns at church. Worse, I wasn’t able to be as active when my other grands came to visit.
Dr. Smith confirmed it. Stepping into the creek was a really dumb decision.
All was not lost! Dr. Smith assured me that he’d wait before treating me if I hadn’t planned to leave the U.S. He told me that bendamustine, although a chemotherapy medication, would not cause the indignities of hair loss. After my first treatment, I had no additional side effects besides minor nausea and increased fatigue.
Conditions now
Life is back to normal. My husband and I have embarked on our overseas work. We’ve been in the tropics of Papua, Indonesia, since January 2022. I swim a mile at a local pool and scuba dive off nearby beaches. I don’t worry too much right now about my cold agglutinin disorder.
That is, as long as I don’t trek in the Papuan highlands.
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.
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