How I prepared for my first Rituxan infusion

What a columnist had to consider in the days leading up to her CAD treatment

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by Mary Lott |

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I swung my leather computer backpack on and hoisted my tote bag onto my shoulder. It was my first time receiving the immunotherapy Rituxan (rituximab). I was quite apprehensive. Over and over again, I repeated the mantra my doctor’s nurse had given me: “It’s not chemotherapy. It’s immunotherapy with monoclonal antibodies.”

Treatment was scheduled immediately after my diagnosis, which, in my case, meant about two weeks later. I was still learning about cold agglutinin disease, also known as CAD, but I didn’t have much time to weigh my options. I had to trust the experts regarding my treatment.

At that point, little was in my control. I wasn’t thinking, but acting more on instincts and emotions. My instinct told me to trust those more educated in health matters than me. My emotions said to run off to my secret place in the woods and howl at the moon. I did the former.

I could, however, control my response to these events. That included being prepared for a long first day of treatment. When I fly to my overseas job, I know I’ll travel for 50 hours before reaching my destination. The same considerations for long flights, up to 13 hours, would apply to my long day at the center. Knowing a good plan lessens stress, I planned my first infusion day with the same vigor as I do my carry-on luggage.

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My preparations

The main expectation was that it would be a long day. I was told to arrive at 7:30 a.m. and that I’d finish up around 3-4 p.m. It was suggested that I bring a good book. I like to read, but I worried that could mean an entire day without the internet. I’d be going through withdrawal symptoms if that were true.

I also was told the infusion room might be cool. Most public places are cooler than I appreciate, so I had to plan for that possibility, too.

Finally, would the infusion room have enough of my favorite soft drinks? Or would I have to wean myself off them the day before? That also needed to be part of my plan.

As I packed my bag, my first concern was connecting to the internet. My too-frequent visits to the emergency room suggested it shouldn’t be a problem; I already had the hospital’s Wi-Fi login and password saved in my computer. But I wasn’t sure where the outlets were. Therefore, I put an extra long extension cord into my very large purse, in addition to my computer’s power source, so I could do some work if inclined. I added my iPad, as that’s what I use to play games and read my Kindle books. Then, because not everyone shares my superior tastes, I put in two pairs of earbuds.

A throw blanket went in next, just in case the room was cold, followed by two pairs of socks for the same reason. I’ve learned that public spaces can be quite nippy, even in June, the month of my first infusion. Finally, but not least, six cans of my favorite drink went in with a sufficient supply of straws. They would be warm by the afternoon, but hot Cokes (a Southern term for room-temperature sodas) are better than no Cokes.

I was told the infusion center supplied lunch. I didn’t have high expectations, but I decided to risk it. It was nice enough then; chef’s salads were among the selections. But lunch quality declined when the business moved into a newer, roomier facility. I began ordering from a local delicatessen that delivered.

Thusly equipped, I, with much trepidation, crossed the threshold of what is now the Spencer Cancer Center in Opelika, Alabama. I was told to choose any big recliner in my assigned area. I scouted for one near an outlet, plugged in my extension cord, and waited to see what would happen next.

I overprepared

It was several hours of procedures and preparations before the infusion began. I soon discovered the socks and blanket were unneeded, and the cans of soda were superfluous. But the laptop and iPad were both used. I received 50 mg of diphenhydramine, and that made me somewhat drowsy. Some volunteers would offer cups of ice or assistance if I needed to go to the bathroom.

I’ve since learned how to prepare for Rituxan infusions. All I bring now is my purse and computer equipment. Many times, I don’t order a meal to be delivered as the infusions don’t take that long. Shorter times equal lighter loads.

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.