My Own Worst Enemy

Overall, it was a decent week. I took Monday off so I only worked in clinic two days this week. One was about 2.5 hours away on the Navajo reservation. It was the first time I had been back there since last March!  It was good to go.  

Wednesday morning I went to the ophthalmologist regarding the swelling of the conjunctivae in my eyes. My hope was that he’d tell me, “Use these drops, and it will go away.” But no, my luck just isn’t that good. I have what’s called conjuctivochlasis, which is basically excess conjunctival skin in the eye. It’s common as we get older, apparently, but in my case, it is caused by the kidney disease and the excess fluid accumulation, which “stretched out” the conjuctivae. And the only way to resolve it? Surgery. Of course. There is a slim possibility it may improve if the fluid retention decreases (as a result of the lower dose of steroids) but generally, per the doc, once you have it, you have it. And the only way to get rid of it is to have the excess conjunctival folds surgically removed. The doc said the condition is not “vision-threatening,” which was good to hear. He also said the surgery is minor and rarely has complications. But still… it sounds like no fun whatsoever.

I’ll have to think about it, and I want to see if there is any improvement when I get to 5 mg or 2.5 mg of prednisone (which will be in about 4 – 6 weeks). But if there is no improvement, I probably will have the surgery at some point because it just makes my eyes SOOOO tired. And it’s gross-looking too. So I potentially have that to look forward to. Yippee. Oy.

Wednesday was my halfway point with the new chemo treatment. Six more weeks to go! Then I think the plan is I do another 24-hour urine test, and we examine the results. My assumption is that the same criteria apply as before:
<500 grams of protein in the urine is considered “complete recovery.”

A decrease in protein but not to below <500 is considered “partial recovery.”
No decrease in the protein output is considered “You are so screwed.”

If there is no improvement, the plan is to go to round three of chemo, with a different drug. I don’t even know the name of the new drug. I’ll know it when I need to know it. I will likely consider proceeding with it as long as it doesn’t have a lot of serious side effects. The only minor issue I had with the Rituxan is that it changed the texture and “curliness” of my hair.  But I can live with that. And so far, other than tenderness on my stomach where I get the shots, no side effects from the Velcade. So… if round three is like these two, I’ll go for it. But if it has the typical side effects of chemo drugs (hair loss, nausea, etc.), I’ll probably decline. But we’ll wait to see if it’s even necessary.

I’m at the nearly two-month mark from getting released from the hospital, and although I definitely can’t say I’m at 100%, I’m feeling better, stronger. I’m still slow, I’m still tired, but I’m definitely improving.  Nothing miraculous, but I can walk farther, stand longer, etc. Hopefully in the next week or two I’ll feel more like my old self.

Wednesday afternoon I was heading to the oncology/hematology lab. Somehow I managed to trip over the dog bed in the living room and took a HARD fall on my tile floors… landing on both my knees. Now this is the third fall I’ve had since getting out of the hospital but while the other two were directly related to my being weak, this one was just a result of my not paying attention. I’ve tripped over this bed before but never actually fell. But like I said, this time I went down hard.  I even knocked myself out of one of my shoes!

As I lay there on the floor, I wondered if I’d be able to get up.  My mom was heading over at some point, but I didn’t know when, and I needed to get up to get to my appointment for my shot. So I decided I couldn’t wait for her and opted to see if I could heave myself off of the floor. Lo and behold I was able to do it! Two weeks ago I definitely would not have been able to do that on my own. So at least it was some progress, even though I had to discover it the hard way.

I was a little sore that evening but suspected that the next morning I would be *really* hurting, and unfortunately I was right. As soon as I woke up, I was in a lot of pain. Luckily it seemed to improve throughout the day, and although my knees are pretty stiff and I’m not moving very quickly, they were never as bad as I thought they might be.  They are, however, lovely rainbow-colored. It just figures… as soon as I started to get stronger, I had to take myself out. Welp, it’ll get better.

I’ve had trouble accessing some of my test results in the myChart portal as of late, but my most recent GFR from Wednesday was 33. Not great, but I’ll take it. Much better than the 13 it was in November. I believe that when my PCP first noticed my diminished kidney function, my GFR was 33, or thereabouts. So I’ve come full circle, apparently. Hopefully this stays stable for a while.

*The* Ronnie Wood??

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