Wednesday lab visit today. Second infusion of Kyprolis. That whole process is pretty easy, although it’s a bit time-consuming but I’m used to that by now. The nurse and I were “discussing” (bitching) about my favorite topic, the outrageous cost of health care. She said she’s had patients forego treatment because they simply can’t afford it. She also said I was very lucky that my insurance approved the Eliquis, the blood thinner/anti-clotting drug, because many do not. In that event, patients are stuck with warfarin (Coumadin), which is old-school and often requires weekly blood tests. Again…how does one schedule all this when working?? It’s rough. And I’m super lucky in that respect. I have paid sick leave, still plenty of it, and an employer who prioritizes this sort of thing over “obligation” to the company. I would venture to guess that most people aren’t so lucky, especially here in New Mexico where much of the work force is hourly. (I was curious so I Googled “percentage of salary vs. hourly employees in NM” but I didn’t get the answer to my question.)
It was not an Aranesp week, but had it been, I would have gotten the shot. My hemoglobin was 9.7. Last week it was 9.8, and I did get the shot, so I was certainly expecting it to be higher (above 10) today. But no. I wonder why I’m not responding like I was before. Frustrating. And I think that they might be more hesitant to raise the dose now that I’m on the Revlimid, due to the blood clot risk. But I don’t know that for a fact. I’ll have to ask the doctor when I see him later this month.
IF I see him later this month. They scheduled a bunch of my appointments on Tuesdays, and I can’t go in on Tuesdays. My original plan was to move my lab days to Tuesdays but not until the middle of July when my work clinic schedule was able to accommodate that. But for some reason they jumped the gun and made the change in June. I’ve told them now to please just move them to Wednesdays and just LEAVE them on Wednesdays for less confusion. Last week I moved all my patients back to Tuesdays, leaving Wednesdays clear for the lab. I’ve spoken to three people about this, and today one of the MAs spoke with me in person about it and said he’d have it changed before I left the appointment. But I just looked at the schedule in myChart, and they’re still on Wednesdays. Hopefully that will get changed soon. I can’t keep bouncing my patients around. And I can’t fill in the rest of my schedule until I know when I’m scheduled for what. I’ll be calling on Friday if it’s not fixed by then.
As I figured, my clinic in Colorado wants me back up there. Ugh. I won’t lie. The break from that four- hour drive and the overnight stay has been a relief. But I knew it wouldn’t last forever. This particular clinic is TINY, which is why they’ve held off of any specialty services. They’ve only been providing urgent care and pharmacy services, the latter being in the parking lot only. The clinic director (or CEO, I can’t keep up) said they have procured shipping containers that they are using as extra clinic space. Yep, you read that correctly. Shipping containers. She said they have AC and internet/EHR access. I asked her if they were quiet, as I need a quiet space. Pause. “If it’s not quiet enough, I’m sure we can come up with a plan B.” Oh boy. The problem with the “plan B” scenario is that it’s put into motion after I’ve already arrived. It’s all very hectic as they try to find a space for me in this tiny place. Meanwhile, I have to set up all my equipment before my first patient arrives. Yes, as you can tell, I’ve been through this before up there. Many times. They’ve been trying to get additional permanent space for the seven years I’ve been going there, and probably long before that. Nothing moves very quickly in Indian Health.
Moving on… Sunday I woke up in the middle of the night, and my scalp was on fire! It was so itchy!! And it just didn’t stop. I thought, “My god, did I get lice from one of my patients??” I’ve had lice one time many years ago as a preschool teacher. I didn’t catch it from a child, oddly enough, but from his grandmother. It made its way throughout the school, teachers and kids included. I also had chicken pox as an adult (zero stars, wouldn’t recommend), and it was mostly centered on my scalp. Obviously, I knew I didn’t have chicken pox again but that’s what it felt like. Monday morning, I checked out my scalp in the mirror. No sign of critters, so no lice. What the hell. It was itchy all day. That night I didn’t sleep much because Zeke didn’t sleep much, so at around 3:00 am, I googled “Revlimid itchy scalp.” Yep. Itchy scalp can be a side effect of Revlimid. I was surprised because by that time I had taken all of two doses. And it’s not a common side effect, but if there’s an annoying uncommon side effect, you can be pretty sure I’m going to have it. Most of the stuff I read said it does tend to go away within a few weeks. I hope so. I scratched my head so hard in my semi-sleep that my scalp is actually sore.
What can I expect though? I mean they’re pumping poison into my system. Two types of poison now. Of course there are going to be side effects, and I’m very lucky they aren’t much worse and don’t prevent me from generally going about my daily routine and most importantly, working. No work = no health insurance. At least no decent health insurance that approves things like Revlimid and Eliquis. So I have to put up with an itchy scalp. What are you going to do.
I think the neuropathy in my feet is improving after being off the Velcade now for three weeks. They still hurt, they still feel swollen and slow my walking down considerably, but I feel like it’s slightly less painful. Hopefully that will continue, and I’ll get some serious relief soon.
Zeke update: This dog. He is a serious trooper. He’s essentially released from the ER vet who did his stomach surgery. His liver is abnormal but she thinks it’s a chronic condition (not cancer), possibly hepatitis in the past or even currently. She’s passing his pathology report on to the internist there but he’s on leave this week. We noticed since his stomach surgery that he’s walking oddly but in his front legs, in what I can only describe as a “two-step.” The knee surgeon whom he saw yesterday feels confident he’s had a minor stroke in his cerebellum, the area that controls coordination of voluntary movements. There’s a good likelihood he’ll have some improvement, but even if he doesn’t, his little wonky walk is something we can deal with. He’s not distressed by it in the least. The surgeon also said Zeke has some resulting cognitive deficits but we have seen zero evidence of that. But this boy…two knee surgeries, emergency stomach surgery, a mini-stroke… and still happy and enjoying his life. And I’m bitching about an itchy scalp. Perspective much?
Creatinine not available yet