The week before Christmas I had my first overnight trip since my hospital stay. I was a little apprehensive: how would I feel, how would I do with the 3.5-hour drive. I hadn’t slept too well the night before but I made it through the day with no problems. I brought my hospital-grade wipes to clean the hotel room, and that was my first task upon arrival. Fun. And I brought my own sleeping bag and pillow so I could completely feel like a paranoid fool. Oh well.
I had hoped to go to sleep early that night since I hadn’t slept well the night before but shortly after I laid down, I had a major case of heartburn with acid reflux. Holy crap that’s uncomfortable! I’ve rarely ever had heartburn in my life and only since all this kidney crap has begun. From what I understand, it’s not the kidney disease itself, but (once again) the steroids used to treat it. I was surprised to experience this since I’m only on the 10 mg of prednisone but Nurse Rose said it could likely be from the 36 mg of dexamethasone (also a steroid) that I take on Wednesdays with the chemo. Lovely. I have a prescription for omeprazole but didn’t think to bring it with me on the trip because I just hadn’t needed it. Oh how I wished I would have had it that night! Needless to say, I didn’t get a lot of sleep then either.
Friday morning I did NOT feel well. Aside from being exhausted, I just generally felt crappy. I finished the day, gassed up the car, and made the long drive back to Albuquerque. I didn’t even bother unpacking the car when I got home. I just went in and tried to go to bed. But another sleepless night. No heartburn, just no sleep.
The next day, Kyle, my mom, and I were supposed to do a “drive by pet parade” for a wonderful woman who runs a dog rescue. Due to the coronavirus, all the fundraising events for the year had essentially been cancelled, but she still wanted to see all her NMDOG success stories from a safe distance. Unfortunately, as soon as I woke up, I knew I wouldn’t be able to make it. My face was completely swollen again, my eyes nearly swollen shut so that I could barely see. (I’ve tried using ice packs on my eyes but it doesn’t seem to help much.) The other weird thing that happens with all this swelling is that it makes my voice really hoarse for several hours. No clue why that happens.
My mom and Kyle came over as planned (socially-distanced!), loaded up the dogs, and headed out to the parade. Then Kyle came back in reporting that my car had a flat tire. Oy. But of course it did. At least he saw it before he got on the road. So the dogs were reloaded into his car and off they went, while I was resentful at having to have yet another “couch day,” as I’d come to call them. I managed to accomplish nothing on Saturday.
I opted to be my own doctor and started another diuretic that I don’t take on a regular basis. It can only be taken three days in a row and has to be taken thirty minutes prior to the ‘regular’ diuretic I take. It seemed to help—or just the passage of time helped, and by around 8:00 that evening, I could open my eyes completely again. Sunday I felt quite a bit better; I think much of that was because I finally slept well. Long gone are the days when I could survive on four hours’ sleep.
Monday I was off. Tuesday I worked but it was a fairly easy day and only an hour’s drive. I was off for the rest of the week. Let the Christmas baking/cooking begin! Once again there would only be the three of us having a socially-distanced dinner, but I did make a full meal for a friend. I was very grateful I was able to string together two days in a row where I had enough energy to finish all I needed to do. Maybe I did too much or maybe it was just coincidence, but Christmas say I felt really crappy again. Acid reflux and no sleep the night before. It was another useless day. Luckily, we weren’t on any particular schedule, and my contribution to the holiday meal (stuffing and dessert) was already done. I was supposed to make rolls but instead talked my mom through it from the couch. As the day went on, I only felt worse. I was in bed by about 8:00.
The unpredictability of all this is what is so frustrating. There is no rhyme or reason as to when I’ll sleep, when I’ll have a good day, a bad day, a damn “couch” day. I’d really like to be able to have a string of good days so I can get some (non-work) stuff accomplished. My house is a mess. I have so many papers I need to go through and organize. I need to vacuum. I need to dust. Laundry to finish. It’s like everything is just half-assed done. It’s making me crazy. Kyle and my mom are really helpful, as much as I let them be. I just want to be able to complete this crap myself. I keep thinking, “Maybe this week will be a good week.” And it just doesn’t turn out that way. BUT… at least this week I have few obligations: lab work tomorrow, working Tuesday (my only day of work this week), hematology appointment Wednesday. But no baking or cooking. So if I *do* feel well, I can direct that to making this house habitable.
The weekly Velcade shots are going well, I suppose. So far, I continue to have no side effects that I’m aware of, other than my bruised stomach is sore at the injection sites. I really only notice it if I lean against the counter or something like that. But no neuropathy so I’m happy about that. I believe I see the hematologist again in January.
My blood pressure remains high. I keep reporting this to my PA doc but she doesn’t seem terribly concerned. The other night it was 160/101—that’s hella concerning to ME. My creatinine had improved to 1.8 but then it rose again to 2.1 so she’s made no mention of putting me back on lisinopril. Today I messaged her a list of concerns, as well as a list of my most current medication regimen because I don’t think we were on the same page with that, even though she’s the one who’s prescribed 90% of them.
The other continuing issue is that since the administration of the Solumedrol in the hospital a month ago, my blood sugar is still high. From what I’ve read on the googles, it’s not unusual to have elevated blood sugar for a day or two after this medication… but for some people, it doesn’t return to normal. Yeah, it just figures that I’d fall into that latter category. The fact that it’s been a month means it’s likely permanent. In other words, the Solumedrol induced diabetes. Awesome. Great. Just what I was hoping for. The irony is that I wouldn’t have ever been surprised to have developed diabetes: everyone in my family is diabetic, we’re Native American on my mom’s side, and sugar is my drug of choice. BUT… after having lost a ton of weight over the last couple years, changing my eating habits, etc., all my numbers were beautiful, normal, perfect. But now, as a side effect of a medication, I have another disease with the potential to affect my kidneys. I fucking love it. So, per the nephrologist, I need to now contact my primary care doctor and ask him to put me on diabetes medication. I mean, hey, what’s one more pill, right? I’m already in the dozens. Bring on another.
2020… you suck.