Well, things haven’t exactly gone the way I was hoping after decreasing my chemo. The last two times I was at the infusion lab, my creatinine had jumped from 1.2 to 1.8, then the following week, it increased again to 2.0. And of course the corresponding eGFR dropped. Not good. But I’ve just been telling myself, “Let’s see what happens.”
A couple of weeks ago, I turned in a 24-hour urine collection to Tri-Core. I was very curious about this since my creatinine had increased. This would tell us if there is an actual change in what my kidneys are doing or not. But Tri-Core lost it. I mean this container is bright orange and bigger than a huge jug of orange juice… and they lost it? This is actually the second time this has happened. And they don’t inform you of this or anything. They don’t pick up the phone and say, “Hey, we don’t know what happened but it’s gone, and we need you to do another one.” Nope. Even though in their record (which I don’t have access to; the lab tech told me this), it says, “Sample missing,” they just let you wait and wait and wait for the results and figure it out on your own. Nice. So I need to repeat that. So far I haven’t gotten another container yet. Maybe this week. Maybe next. Who knows.
This week my creatinine had improved to 1.6, so I was happy to see that. Hopefully it will continue on a downward trend. I’m guessing that when I get sick (like with the stomach bug I had before Christmas), it’s just going to throw everything off for a while. Even though I’m really careful about making sure to drink lots of water, things still seem to go a little haywire. I really hope that’s all it is.
Also on Wednesday, my hemoglobin dropped below 10 for the first time in many many months. I should have gotten an Arenesp shot, but the authorization had long since expired, and my doc was out sick so he couldn’t renew it. If it’s low the next time I’m there, I’ll get the shot.
I had another eye exam Friday, and it was VERY thorough. I really liked this optometrist a lot. She said there was no doubt I had cataracts. (How did the previous doc miss that??) Interestingly, the one in my right eye is much worse than that in my left, which I could easily tell during the testing. But in my day to day life, even when covering one eye then the other, it surely seemed like my left eye was much worse. I think that’s just because I’m so left-eye dominant and reliant on that eye so my brain thinks it’s worse. The good news (I guess) is that they no longer require your vision to deteriorate to a certain point before surgery is an option (as my oncologist told me). If the cataracts are affecting your quality of life, out they come.
Luckily for me, the optometrist worked for 15 years at Eye Associates, the big name in town when it comes to eye issues and eye surgeries. She told me the name of the doctor she wants me to see and got the referral in within about two hours. The bad news is the first opening they have for just the consult is in mid-May. I’m hoping the cataracts don’t progress quickly, but she said they can when you’re on steroids. Great. I mean they certainly seemed to progress quickly to this point.
It’s sooooo annoying have these vision issues. (You can google it and click on images if you want an idea of how cataracts affect vision.) As I mentioned before, I can drive fine; I certainly don’t feel unsafe on the road. But during the day, the bright sunlight is blinding and painful. I’m wearing those super duper huge sunglasses that block out as much light as possible. In the daylight, I can’t read the street signs until I’m right up on them, which isn’t a huge ordeal since I know where I’m going. During the night, it’s not nearly as bad. As I mentioned before, typing on the work computers is really difficult. I can’t dim the background, and I have to make the font much larger to read it. Right this second as I’m typing, I have the background as black and the text as white, and it’s much easier. But that doesn’t help me in clinic.
While I’m happy that at least something can be done to correct this, now the other issue is managing to work two eye surgeries and the requisite time off into my clinic schedule. Yes yes, I know. My health is important, I need to have this done. Duh. But when you are one of three (soon to be two) people who provide the clinical services that we do in two states, and when we’re already scheduling patients out about four or five months, canceling clinic and trying to get those patients rescheduled is not an easy thing. I’m not being a martyr. I’m talking logistics here. It’ll get done but in the long run, it’s just going to mean longer weeks for me.
And in case I haven’t mentioned it yet…
I’m physically tired and I’m mentally tired from dealing with all the fallout from all these medications. I get it: it’s needed. It’s doing the job as far as we can tell. But unless it buys me enough time to stave off dialysis until I can retire (still another 10 – 12 years away), I’m not going to be a happy camper for having gone through all this and all the side effects just to figure out how to manage my “home dialysis” while at the freakin’ Quality Inn for work, you know?
This was not the best of weeks. Hopefully next week will be better.