chapter 20 post hospital

Date: Thu, Jun 17, 2021 at 4:45 PM
Subject: chapter 20 post hospital

TL:DR
A week of clinic visits to ensure he has enough platelets and red blood cells post chemo. Long tiring days, but managing well.

We escaped the 6 hour marathon at SCCA clinic for the 2nd dose of chemo since it was given at the hospital. Even so, the schedule of followups was a bit daunting.

Thursday I realized that the parking fees had jumped from $6.48/day to $16.48! Ouch. Not worth having Riva, our RV, around at that rate. Susan happened to call with an offer to bring our mail, so we asked if I could run Riva up there for storage and get a ride back to the bus on her trip into town. That worked out great. Mailed received and parking problem solved. We managed an overdue haircut and took a shower before I left.

Friday the 4th, was a long day at the clinic for labs, consult, and platelet infusion. 11:40 to 6:20! We made use of a wheelchair and begged for, and got, a place for Dave to lay down. Sure wish that option was available for many a patient in ER waiting rooms. Why miserably sick and injured people should have to sit up in waiting rooms makes no sense to me. Not enough energy for a shower, so wipe down instead.

Saturday was another day off.

Sunday, the PICC dressing needed changing, more labs, and another bag of platelets. Only about 4 hours this time.

Monday the 7th, was supposed to be a day off but the foley line came off – separated from the anchor on his leg when he rolled over, so we went in to have it monitored and removed. Had lunch at the clinic Bistro and made it home in time for me to take the shuttle for a grocery run.

Tuesday, the 8th, was the usual labs plus a visit with Dr. Cassaday. And more labs as some of the tests hadn’t been done! Also another dressing change as the 2 day old one was falling apart. Still using the wheel chair and lying down whenever possible. Just walking from chair to toilet would get him breathing hard as if he had run upstairs. Nothing in the numbers to explain it though – including the oxygen saturation right up there at 97 plus or minus. Yes, a bit anemic, but no more than other times without this effect. Put down to either the leukemia itself or the treatment or unknown factors. 9AM to 1:15PM made for a welcome "short" day.

Wednesday was another day off. We discovered that an appointment had been made with a urologist for the 21st, without consulting us, but it didn’t conflict with any other plans and seemed a sensible thing to do. We wanted to be sure that he was “in network” so there would be no insurance hassles, and it took a ridiculously long time and 6 or 7 phone calls to do so, but we did verify it. We think.

Thursday, the 10th, was going to be another all day marathon including bone marrow aspiration and lumbar punch as well as labs and probably platelet infusion. Headed out at 9:45. After the labs we asked for a spare bed to lie down on and they found one and got him all comfy. Except 5 minutes later they said that there would be no infusion after all and they would move up the other procedures so that he could go home sooner – and moved him to a less comfortable exam table closer to where the BM and LP would be done. We waited there for maybe half an hour and then they moved him again to the procedure room. Not complaining! They were indeed juggling things around to accommodate him and got us finished up by 2 instead of 4:30. We missed a shuttle, but got home by 2:30. They had to do a biopsy as well as aspiration, meaning that they took a bit of pelvic marrow “bone” as well as liquid, because the blood did not have enough stem cells in it. Don’t understand the significance of that if any.

I’m sure glad that we have lodgings at Pete Gross House, only half a mile away from the clinic and with a shuttle running every 20 minutes (except when they detour to the grocery store twice a day). The routine is really not all that much to deal with when feeling okay, but when out of breath and tired, it becomes a chore. Except for the fatigue, though, he’s doing great. No pain, minimal nausea under control, digestion okay. And all the symptoms are related to preconditions and other meds. So far as we can tell he has had zero negative reactions to the chemo! Certainly nothing compared to the chemo of 2019. No hair loss, oral mucositis, etc. etc.

This doesn’t quite bring us up to date but is a good breaking point in the saga.

Robn

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