Hello, Hello

Breaking my unintentional silence

It’s been a hard several weeks, y’all.

I didn’t mean to stop my updates. I just didn’t have the wherewithal to write.

The last time I wrote was 8 weeks and 1 day ago. I was writing from St. Louis, where I was getting the same kind of radiation treatments I got last spring. The time there was really good but it went by in such a blur that there was no chance to write anything more while I was there. And then my first week home went by in that same kind of blur, and by the end of that first week at home, I was dealing with an unexpected radiation side effect - radiation-induced liver inflammation, which not only hurt (like, a lot) but also made it difficult to take deep breaths (which I learned is called “splinting”).

Before this extremely unpleasant side effect had resolved, it was time for my next chemo infusion. The infusion itself was uneventful, but three days later, I developed a level of fatigue I hadn’t previously experienced (not on this chemo regimen, nor on any of my others). Before long, I was also dealing with chills, sweats, breathlessness, occasional low-grade fevers, and occasional presyncope (feeling faint). It was not fun. It also lasted most of March, even after IV fluids and a blood transfusion. Actually, after the blood transfusion, the chills, sweats, breathlessness, and occasional fevers stopped and never resumed; the fatigue and occasional presyncope, however, persisted. The presyncope’s most dramatic presentation happened mere moments before I was about to walk into our church sanctuary to lead worship. Instead of walking into the sanctuary, I found myself lying on the floor of our conference room, where one of my sons came to collect me and take me home.

A few days later, a week of low-dose steroids booted the fatigue to the curb, but as soon as I went off the steroids, the fatigue came back. We kept postponing my next chemo infusion because of my fatigue and anemia, and now here we are, six weeks since my last chemo infusion, and I still haven’t been able to get my next one yet. I am, however, getting a blood transfusion tomorrow, since my labs yesterday showed that my hemoglobin has fallen to 7.7, which is the same as it was when I got the blood transfusion last month.

In an effort to figure out the cause of all this unpleasantness, I had multiple blood tests, a COVID test, a set of flu tests, a set of CT scans with the pulmonary embolism protocol, and even a brain MRI.

A BRAIN MRI, Y’ALL. I was freaking right out about that one. And the reason a brain MRI was ordered was because an intermediary reported my “tunnel vision” (a sign of presyncope) to my doctor as vision changes (a potential sign of brain metastases) and my doctor was also concerned about the headaches and nausea I had early on (also a potential sign of brain mets but in actuality a result of moderate dehydration that resolved with IV fluids). Thankfully the brain MRI results landed in my portal very soon after the MRI, and EVERYTHING WAS NORMAL.

The whole experience made me miss my dad even more than usual, not only because he would’ve talked me down (repeatedly) as I freaked out (repeatedly) about having a brain MRI, but also because I didn’t get to hear him make one of his favorite jokes: “They examined her head and didn’t find anything there” (which he liked to say about my mom, who had more than her share of cancer-related scans over the years). My blood transfusion was on his birthday and my brain MRI was the day after, so he felt extra-close.

After all those tests revealed absolutely nothing to explain the ongoing fatigue, it was finally chalked up to the “double whammy” of having radiation and chemo back-to-back. At least it was confirmed that I didn’t have COVID, the flu, a pulmonary embolism, or brain metastases.

At any rate, this is what’s been up with me these last 8 weeks and 1 day. Or this is at least some of what’s been up with me. There is other stuff I will back up and share - it’s been a very eventful couple of months - but I will save the rest for future updates, which I promise will happen before another 8 weeks and 1 day go by….

And because I don’t like to create updates that are all words and no images, here is one of the very few pictures I took in St. Louis. Yes, it’s the bathroom in our Airbnb apartment. I think I originally took the picture because I liked the half-size vanity and sink and thought something like that might work well in our very small bathroom. But when I look back at the picture now, what I mostly see is what I miss - the fact that someone else was going to come along and clean this bathroom after we were gone, and the pure joy of sharing a bathroom (and an apartment, and 5 days away!) with another grown woman, instead of, say, three fellas (two of them teenagers). Oh, I missed my three fellas, of course, and I was very happy to come back home to them. But look at this bathroom, y’all. This is how it looked after we’d used it for five days! And someone else was going to come along and clean it! Even though, as far as I can tell, it is already pretty much clean! Ah, what a life we lived for five days in February.