After we were sent home without chemo last week because Mom’s white blood cells (WBC) were too low, we were energized to return yesterday for infusion. However, after having labs done, we found ourselves being sent home once again. Today, though, Mom is back in that chair.
During Mom’s first infusion, she had a reaction to one of the chemo medicines. The team decided to make some modifications to the regimen, including slowing the rate of infusion for one of the meds — which meant each future session would take longer.
When Mom was sent home last week because the WBC were low, and come back this week, it knocked all of the future appointments out of whack. They all needed to be rescheduled.
When the appointments were rescheduled, they were scheduled according to Mom’s original regimen, instead of the revised (slower) one.
So, when we arrived yesterday for infusion, they realized that Mom was only scheduled for a 3-hour appointment, and she needed a 5-hour appointment. The problem was that there was no longer enough time in the day (before the emergency response team left for the day) to fit in 5-hour appointment.
With heavy hearts we had to pack up and return home, with a fresh appointment for first thing this morning.
There are a lot of nice, and correct, things to say about how this was for the best. It was for the best. But the frustration was palpable. Mom, normally very easy going, was really very upset. It takes a lot of emotional resources to get yourself in the right space to go in for chemo, and now it was twice in a row that it felt like it was all for nothing. Sure, labs were completed and consultations were held with our provider, but, still… the frustration was real and a little overwhelming.
Mom’s sister, my Aunt Diann, had flown out a few days ago from Arizona, and thank God for that, because we were all spent. As hard as it was for Mom to start and stop like this, for Alia and I, it was also exhausting. So many arrangements with regard to child care and work were made and spent and they would all need to be made again, on the fly, to return the next day.
Aunt Diann took over and sent us home for the night while she slept over with Mom and helped get her out of a funk and motivated again. By the time we arrived at O-dark-thirty today to pick up Mom she was back in high spirits.
And so, on the highway before 7am, we found ourselves back at Abramson Cancer Center, (finally) getting Chemo #2. Mom’s numbers were fantastic yesterday (WBC went from 3.1 to 8.8; ANC went from 0.80 to 5.40), and we have all the future appointments rescheduled to accommodate the 5-hour chair.
Today, the modified regimen went off without any issue.
It was a longer day, but smooth and easy. Mom slept most of the time, and when Alia and I were not dozing off, wishing we had a big reclining chair like Mom’s to sit in, we chatted and goofed off.
We are hoping these IV drugs keep up up and about for the next couple of days while she continues her at-home chemo infusion. We have people scheduled to sleep over each night and people scheduled to bring over dinners.
Mom’s hairdresser just arrived for a home visit (thanks Aunt Judy for making that happen!) to “do something” with the hair that is starting to fall out in greater quantities. Mom says she would rather be bald tand wear a head scarf than have to pick up one single strand of fallen hair.
Aunt Diann is busy making a lasagna and meatballs. Spirits are high.
After a few setback, I have to say, today was a pretty, pretty, pretty good day.
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Ria you are the bravest person I know. I am glad Judy got Nanci to do at at home visit.
I’m glad Diann was able to fly in. Family Is so important and your family is beautiful
Don’t ever give up. So many people need you. You are loved 🥰 so much by so many
Love ❤️ you Ri
Thank you so much, Adrian, for your excellent updates on your mom. I am with you all in my heart and spirit. Sending much love.