For whom the bell at the treatment center rings, it rings not for me

There was no bell at the cancer center in 2018 when I was first treated. The place was small and crowded. No one who finished treatment rang a bell to mark the end of their infusions. The end of my treatment was recognized with a farewell and best wishes.

But there are at least two bells at the new Spencer Cancer Center in Opelika, Alabama, where I receive my treatment. One is in the infusion room, and another is outside the main door. Over the years, I’ve seen and applauded many patients who have finished their infusions. But not me. I have never rung the bell.

No one has neglected my “end of treatment” celebration. I haven’t really reached the end yet. I’m being treated for cold agglutinin disease (CAD), a rare autoimmune disorder where self-targeting antibodies attack and destroy red blood cells at low temperatures. It is a chronic disease, meaning CAD can only be controlled, and treatment is ongoing.

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Celebrating milestones

So how important is it to have such a celebration to recognize even seemingly small milestones in our lives? It is more important than it first appears. Small milestones are some of the ways humans stay motivated, resilient, and mentally well over long stretches of effort. While there were no celebrations at the cancer center when I finished my infusions, my family took me out to a restaurant where I enjoyed a cheesecake with sparklers, and the wait staff sang to me.

For those of us who don’t end treatment, but merely finish a round of it, there are other ways we can recognize a milestone. These work best when the ritual is simple, repeatable, and focused on acknowledging progress rather than declaring the journey finished. Pausing and recognizing a reached goal helps capture lessons and maintain the momentum of the journey.

For me, those have included special dinners and receiving a commemorative plant from my husband. Last January, when I got out of the hospital the first time, I invited a few friends and family members over to the house, along with a pastor friend, and we had a small service of Thanksgiving.

Final infusion

This past March was my last set of infusions. The month before, I had had an allergic reaction to the Rituxan (rituximab). The staff administered antibiotics and other medicines and called for an ambulance. I spent the next several hours being observed in the emergency room before being released. The next day, I continued with my Bendeka (bendamustine hydrochloride) infusions.

But in March, it was determined that we should try again after a desensitization protocol. I was prescribed antibiotics and steroids to begin two days before treatment. At last, the fateful day of my infusion arrived. I reported early because the infusion would take all day since it was being administered slowly.

As usual, blood was taken and analyzed, and I was given another batch of antibiotics and steroids to preempt an allergic reaction.

The day was long and boring. Patients had come and gone, and almost all the workers had gone home. I had shown no reaction whatsoever, even as the speed of the infusions was increased. Finally, the last increase happened.

At first, all seemed well. I got up to go to the bathroom. As I was returning, my legs lost their strength. I developed low back pain. I called my nurse, and he came running. Soon, my forearms itched, and a rash developed. My face, tongue, and eyes swelled up. I felt chest pains. The infusion ended in a more serious allergic reaction than the one in February. Again, I was rushed to the ER for a longer period of observation. Ringing the bell to celebrate the end of infusions was completely forgotten about.

Now, I have completely changed from infusions to an oral tablet. Certainly, a ritual like ringing the bell at the end of cancer treatment will not be in my future. Nonetheless, I see this as a step to be celebrated in the long journey of treating and controlling CAD. I think I’ll buy a plant.

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.