Two Hits and a Miss

It’s been a rollercoaster couple of weeks.

Last Wednesday I had both a chemo appointment and an appointment with the oncologist. The appointment with the doctor was at 4:30, and they actually called me when I was driving there to see if I could come in early. I told them I was on my way for my 2:40 appointment for the lab and chemo, and if the doctor wanted, he could just come over to my chair during my infusion as he’s done in the past.

While waiting for the pharmacy release of the meds, my lab results came back, and the nurse was suitably concerned about my creatinine, which was 2.0. (It was 1.5 last time.) However, my hemoglobin was 10.9. I was really pleased to see that. In the past, it had taken several shots for my hemoglobin to increase to the point where I didn’t need another shot (above 10.0). Nice to see that one shot did the trick this time. Hopefully it was stay above 10 for several months like it did before.

The doctor came in, and we discussed the rising creatinine. To my dismay (but not to my surprise), he said we may need to go back to the three-times-a-month chemo. Damn. I know it’s only one extra day a month but it definitely messes with my work schedule, and it’s been nice to have an extra heartburn-free Wednesday as well. Plus, as I’ve said before, a person can’t just stay on chemo forever. I’m sure long term this crap has side effects I’m not even aware of.

He said he really needed me to do the 24-hour urine test. I reminded him that I had done it, that Tri-Core lost it, and I assured him that I was planning on doing it again that weekend. He said, like the lab people always tell me, “Just drop it off here.” Yeah, I work from 6:00 am to usually 7:00 or 8:00 pm. The lab isn’t open then. Plus I have to do it over a weekend since I have a J-O-B. So I have no choice but to take it to Tri-Core.

He also said the kidney biopsy is more urgent now. Before, it was something we discussed as doing sometime this summer but now he said I need to talk to my nephrologist about getting it done soon. That will determine if changes are to be made to the chemo schedule and any other next steps. As he reminded me (as if I need reminding), “There’s no playbook for this. If the chemo stops working, we may try two drugs [which he named, one I’d heard of but can’t recall, the other I’ve not heard of].” They’re drugs used in autoimmune disorders, even though my disease isn’t autoimmune. So, more watching and waiting.

The next day was the big day! My first cataract surgery! My appointment wasn’t until 2:00. My mom took me, and there was a lot of waiting once we got there. Then I was brought into a large room with several bays, and lots of people waiting for their surgeries. Then it was more waiting, and I can’t even recall how many people came in and asked me various questions, started the IV, hooked me up to this or that, and then left. Everyone was very nice. Two people asked me if I was in the medical field; I don’t know why. One person said we had the same birthday, another peppered me with questions about where to take her dad for audiology care. After taking my blood pressure, one woman asked me what it normally ran. I was concerned that maybe it was very high, and they wouldn’t do the surgery or something. I told her it was usually right around normal, 120/80. She said mine was low, 106/68, and asked if I felt dizzy at all. I said no, I felt fine, and that I was just cool as a cucumber.

And I was. I was not nervous in the least, just so happy to finally be getting this done. Then they wheeled me into the operating room. They said I would be awake, but wouldn’t feel anything, and wouldn’t remember anything either. They started the IV, loaded up the Versed, and in what felt like 30 seconds later, they were telling me it was all done and went well. I guess in reality the actual surgical procedure takes about five to seven minutes. The only thing I remember was at one point, they told me to look straight up at the light. Other than that, it was just over. It wasn’t until after the surgery that I even met the surgeon. I got into the wheelchair, and I was taken out to my mom’s car, and that was that. No eyepatch even. (Oh, and in the past, they would give you sunglasses to wear. Now, if you don’t bring your own, you have to buy a pair from them. Wow.)

I felt fine afterward, a little dopey, but that was it. My eye didn’t hurt at all. I had a very slight headache which was more pronounced when I looked to the far right. It was then that I could also see the edge of the lens. My vision was very blurry at that point. I couldn’t really see near or far (I was fit with a near-sighted lens so I would still need glasses for distance).

My follow up appointment was early the following morning, and I wasn’t allowed to drive yet, so I stayed the night at my mom’s. My vision was much improved the next day. Probably not whatever normal is going to be for me, but much better. The follow up appointment was very brief; I think I was in there for fewer than 10 minutes. I first saw a young woman who had me read the letters off the eye chart, and I realized that I could read them better without my glasses than with. My glasses now are too strong for my left eye. Hmm. Now how is that going to work? She told me that after my second surgery, they will give me loaner glasses (for a refundable $25.00) until I can get my own glasses. That’s pretty cool.

Then a guy came in, and he is a “CRA, COMT,” or a certified retinal angiographer and a certified ophthalmic medical technician. I told him they had his name spelled wrong on the electronic board downstairs. Even with all those certifications the guy doesn’t get any respect. Rude. Anyway, he looked at my eye with all that high-powered equipment, said it was swollen, which he said was normal, and that everything was healing well. And to come back in a week. And I was out of there.

The improvement in my vision is truly astounding, even without having new glasses. The brown sepia tone is gone, and of course the big smudge that was right in the center of my eye is cleared up too. I can see much better at a distance than I could before, although it’s certainly not normal vision. But I’ve been amazed that I can see clocks on the opposite wall, I can read these words as I’m typing them on my computer without my glasses on. Incredible. I can’t see super up close very well. Prior to the surgery (or with my right eye), I’d have to hold my phone about six inches from my face to read it. With my left eye, now I have to hold it about 12 inches away to read it. Any closer, it’s too blurry. Reading the teeny serial numbers on hearing aids has been a challenge but I use my otoscope to magnify them, which I’ve been doing for some time anyway. I can read the computers at work without my glasses, so that is a relief because that was SUCH a struggle. And I don’t have to have everything in dark mode now. After I have the second eye done, I can forego the giant celebrity sunglasses.

I still wear my glasses when driving and when walking around, like at the store and such. But much of the time they are hanging around my neck on a chain. I’ve worn glasses since I was probably 12 so to be able to see anything at all without them is so new.

When I was at the follow up eye appointment, I went to the surgery scheduling center to see if there were any cancellations for the last week of March (I’m off that week), but so far no luck. I’ve called twice since then but just had to leave a message. No call back yet so I assume no cancellations. I’ll keep calling though, and I have another follow up this week so I’ll pop in then too. And that last week of March, I’ll be calling every day! Hopefully they’ll get sick of me and schedule me to get me off their butt.

Bottom line on the cataract surgery is that it is a piece of cake. Lots of eye drops to use for the first month, but that’s the worst of it. If you need to have it done, don’t put it off. You will be absolutely amazed.

Friday and Saturday I completed the 24-hour urine collection and turned it in to Tri-Core on Saturday. I told them that the last container had been lost, and she was so apologetic. She said it’s not actually the lab that loses stuff, it’s the courier. I guess that makes sense.

I was a bit anxious about this. With my creatinine and increasing and my eGFR and hemoglobin decreasing, I was anticipating seeing a significant increase in the protein in my urine. The past two collections also showed an increase. Not a significant amount, but still an increase. I kept waiting throughout the week for the myChart notification telling me the results were in, but no dice.

Thursday I had a break in my schedule so I decided to give them a call. Just as I was looking up their number in my phone, the notification came through on myChart that I had new test results. I was nervous as I was checking them.

It said, “Unable to calculate [protein] due to low urine protein.”

Say what, now? The protein in my urine is so low it can’t be calculated?? Surely that can’t be the case. This must be code for some sort of lab error.

I messaged my oncologist to ask him what this meant, and at the exact same moment, he was messaging me: “Check out your results. There is so little protein now it can’t be measured.”

Holy shit. This couldn’t be any better. To go from 10,000 mg of protein in the fall of 2020 to undetectable now? I was stunned. I just sat there staring at nothing for a long while.

When I came back to my senses, I messaged the doctor again. So why is my creatinine continuing to increase? “I don’t know. We need that kidney biopsy. There could be something else going on in your kidneys.”

SHUT YOUR MOUTH, SIR. You shut it right now. I don’t even want to entertain the notion that something else is affecting my kidneys. (How ironic would it be if it was the Kyprolis? It can cause kidney damage although it’s usually an acute issue.)

He did say that in light of these results, we will stay with the current regimen of chemo twice a month. That was good news.

Wednesday I see the nephrologist. They sent me a reminder text yesterday, and while I didn’t forget about the appointment, I DID forget about getting the blood work done. Whoops. Even though I constantly have blood work done for oncology, the nephrologist orders some stuff oncology doesn’t need (and when I see endocrinology at the end of the month, they also order stuff specific to them). Luckily I was able to get an appointment today. So Wednesday the doc and I will discuss the kidney biopsy.

Third time’s a charm

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