“Strive for continuous improvement, instead of perfection.” – Kim Collins
It is common in the Myeloma community to say “It’s a marathon, not a sprint!” This is so true.
Changing Dave’s antibiotic did the trick to stopping the cough and getting a STELLAR night’s sleep for both of us. I barely woke up when the nighttime brigade showed up to do vitals.
I have to personally thank Dr. Y, as she is known on the Myeloma Floor of the hospital, for listening carefully to our observations about Dave’s cough and the coincidence of the antibiotic drip with the increase in coughing. She and Dr. van Rhee changed it immediately and then set about doing many other tests to confirm there was nothing else going on of a more sinister nature. All those tests came back good and Dr. Y validated Dave this morning for being an observant patient and communicating well his view of what was happening. She is an excellent listener and didn’t dismiss his own personal observations.
Dave is back to champing at the bit to get sprung, and again we explained “tomorrow,” it will be tomorrow! Then we will be in the outpatient group, coming in daily for immune support from our wonderful nurses in Infusion B! Hard to believe. Still, I can’t wait to get back to Infusion B, although I must say that all of our nurses and doctors on the Myeloma Ward have been outstanding! Susan Heath, the Nurse Case Manager, put together the continuity of care and picked our nurses. Our nurses, Kathryn, Jaime, Sheraya, Tonya, and this morning Amy, have all made us feel important and well cared for. Every day the neurology team shows up to do a more in-depth exam to make sure Dave isn’t experiencing any neurological toxicity side effects. I love the collaboration that occurs with the different disciplines here at UAMS. I’m confident they will all pass along their observations for the next Car T patient who hits the floor today and then another the following week and all those who come after. We will most likely have different experiences, but gaining some insight into expectations in a real-life setting is vital to making it go well for all the others. I know they felt honored to be our nurses, and we felt incredibly blessed.
This morning in the local Arkansas Gazette, Sean Clancy did an outstanding job in 450 words of capturing this amazing experience happening here in Little Rock at UAMS/MIRT. I will check in with him again as we get discharged to go home and tell him how we’ve made out.
Keep the prayers coming! We feel them all every day as we are on this remarkable journey.
(PS. I have cooked spaghetti sauce and stopped by Honey Baked Ham for a hambone and split pea soup ingredients. I’ll be a bit locked down with Dave for some time needing to continue to monitor any neurological toxicity. Although most have said it will likely be in the first 7 days, which we have gotten through without any incidents. And of course, Goodness Village will continue to support us in every way, and drop a meal by weekly or more if needed.)
