Are you sitting down? Are ya? How about mostly GOOD news for a change?
Overall, I think things are improving.
I am still tired a lot but I definitely have more energy than a month ago. I’m sleeping better most of the time, and I can get through the day better now than I could before. I’m just feeling a little more like my old self. Last Wednesday my hemoglobin was 10.1… no shot needed! I’m sure that’s why I’m feeling a bit better. First time in months that I’ve been able to skip a dose.
As of this past Saturday, I’m now on 2.5 mg of prednisone for two more weeks, then I’ll take the same dose on alternate days for two weeks, and then I’ll be DONE with that shit. D-O-N-E. Now… I said that before in October, and then all hell broke loose. But I can’t imagine a circumstance that would compel me to take high doses of this junk again. I’m seriously over it.
With the reduced steroids, the swelling has improved a fair amount. My thighs are swollen but not nearly as bad as before. The swelling has moved down to my lower legs and feet. But maybe it’s working its way out of my body. I don’t know.
My feet were really starting to bug me: painful, some tingling. I thought perhaps this was the neuropathy they had warned me about that’s a potential side effect of the chemo drug. Then I realized I only had those issues when I had both the compression socks and the plantar fasciitis “sleeves” on at the same time. When I gave myself a break from the sleeves, the tingling went away. I suspect I might be getting plantar fasciitis (again) in my left foot but we’ll see how that plays out.
When I take both the compression socks AND the PF sleeves off, my legs look hilarious. The socks come up to just below my knees so there is a definite indentation in my legs from the socks. The sleeves come up about three inches above my ankle, also leaving a serious impression. My legs look like Popeye’s, although maybe in reverse. It ain’t pretty.
I still have the prednisone moonface but that’s different… it’s not fluid accumulation in the face. It’s actual fat deposits from the prednisone. Isn’t that nice?? But it “should” improve, per everything I’ve read. We’ll see. I’m not hopeful.
The conjunctivochalasis (swollen conjunctiva) in my eyes has improved, although not back to normal. But I no longer feel them when I blink and my eyes aren’t as watery now. I still have a significant amount of swelling around my eyes with very heavy eyelids. I look as though I’ve been crying for hours or haven’t slept in days. I think I’m just getting used to that. And my near vision is terrible! This is not related to the kidney stuff. I think it’s related to the “I’m going to be 53 soon” stuff. My distance vision is fine but trying to read the computer at work is a joke. I don’t yet have bifocals but I am in definite need. I have an appointment with the optometrist at the end of the month. For now, I’m managing by wearing dollar store cheaters over my regular glasses. It’s a look I highly recommend.
The 24-hour urine results never did show up so I will repeat the test tomorrow. The hematologist is anxious to see the results. He sent me a message that said, “Both you and I want to know what this [chemo] is doing. It looks good and I wanna prove that it’s good.”
If this regimen does work, he and the PA doctor should write it up. I imagine they don’t have the time but it would surely be a good reference for other providers. It’s unlikely the hematologist will ever see another case of this in his career but someone will—maybe even another provider in New Mexico. And wouldn’t it be nice if the provider and the patient didn’t have to search around for treatment? And the patient didn’t have to travel to another state?
There are still bubbles in my urine (sorry for the TMI, but hey, we’re all adults, and we all pee), which is a sign of protein in the urine. My PA doc frequently asks: Are there more bubbles? Fewer bubbles? Hell if I know. Not an easy thing to quantify. I’ll just wait for the lab results.
AND… last Friday I had a massage. FINALLY! I’d been needing one for a long time. The last one I had was early February of last year. The of course COVID hit, and there went massages. This massage therapist really leans in to work out the knots, which is why I go to him. I was sore the next day but I had anticipated that. It helped so much though. I was having pain shooting down my arms when I would turn my head to the right or left—that pain was gone by the time I left the appointment. I’m going to try to schedule appointments every two weeks for a while to work all this crap out.
Zeker update: He has his knee surgery last Tuesday. The surgeon opted for only one knee at a time instead of the bilateral. Sadly, the doc said he hadn’t seen knees this bad in twenty years. He said the prognosis is “guarded” where typically he can say a 90 – 95% return to normal. But our primary goal is pain reduction. He’s not an overly-active dog so hopefully that will be achievable. I feel really bad that we hadn’t realized he was in pain prior to this but he had not been limping until he injured himself in January. It’s been a week since the surgery, and he seems to be doing VERY well. He started putting weight on that leg the day after the surgery, and the following day, he just got up off his bed and started walking! It wasn’t the most graceful gait but we were impressed. He’s in good spirits too. (I could learn a lot from this dog!) He’s just a happy boy. Of course, his left leg is still a wreck and painful so that affects his walking too. The next surgery is tentatively planned for June. His follow up is in about a week so we’ll see what the vet thinks and see if he’s cleared for doggie orthopedic rehab. Paws crossed, as they say.