With my health from CAD steadily declining, I call in the cavalry, part 1

First in a series.

I woke up earlier than usual for my first day back at the Spencer Cancer Center in Alabama. But as my anemia has gotten worse, getting dressed takes much longer than usual, because I have to rest often. But my ride was coming at 7:30 a.m., so I forced myself to keep going.

I was both dreading and looking forward to this day. Last year, my health began a steady decline in early February, and the downward trajectory seemed to accelerate over the last couple of months. I was positive that treatment for cold agglutinin disease (CAD) would help. But, like any sane person, I wasn’t excited about getting my arms jabbed repeatedly in the hope that one of my elusive and temperamental veins might get snagged.

CAD is a rare autoimmune blood disorder where cold temperatures trigger the immune system to mistakenly attack red blood cells. My decline started last year after a very brief exposure to extremely low temperatures on a tarmac in Montreal. Once the agglutination began, proteins from the complement cascade destroyed my red blood cells, a process known as hemolysis.

I’ve tried all year to slow or halt it, but it was time to call in the cavalry.

My friends escorted me into the infusion room and saw me settled into my chair. I’ve had three rounds of infusions before, so much of this was familiar to me. The room itself was quite large. There are floor-to-ceiling windows along one side that overlook a small garden, which gives way to a pine forest. The patient chairs are arranged in six semi-circular areas called bays, and it was easy for me to snag a chair with a long view of the garden.

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Sticking the jabbing

At this point, things did not proceed along familiar lines. Protocols had changed in the four years since I was last here.

A sweet nurse came over to educate me about administering Rituxan (rituximab) and bendamustine, and what the side effects might be. She was very thorough, but we were interrupted several times because the nurse administering the meds wanted to get started. Since it was the first time in a long time I’d received Rituxan, it was going to be administered very slowly.

This meant my arms had to be stuck. My veins have a reputation at the Spencer Cancer Center, and not in a good way. There was a first stick and several thrusts within to get the needle settled just right. But the needle never did get settled just right.

I requested an AccuVein device, a really cool machine that’s a lot like a fish finder in a lake. It shows exactly where those elusive good veins are. Showing a vein ain’t the same as snaggin’ a vein, alas, but after a couple of tries, the slow drip, drip, drip began and I was well underway.

The Spencer Cancer Center offers many services tailored to its patients’ needs. I got a goody bag with information about businesses in our town, including where I might purchase a wig if I lose more hair. Also, a masseuse came by to explain how tension and stress build up in our muscles, and I enjoyed one of the best soft tissue massages in my upper neck and back that I’ve had in a long while.

Back on track, briefly

I left that day feeling like I was finally on the right track again, and I was still feeling better on Thursday. My depressed mood had lifted a bit, and although I was still fatigued, I felt like things were looking up.

But, as is frequently the case, the medicines were starting to work by Friday, and the CAD was fighting back. I just wanted to stay in bed. So I did. Saturday brought diarrhea and nausea. Fortunately, I have medicine for that.

I felt better on Sunday. The sun was shining, so I looked out the window to enjoy the birds.

Next time, I continue to chart how I’m feeling, and share thoughts I have had about suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention helpline at findahelpline.com.

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.