Long time no blog! I guess like most things, no news is good news.
I’ve had several doctors’ appointments since July. The concierge endocrinologist (Dr. S) told me because of my “complicated health history,” she wanted to see me monthly for the next several months. She’s a bit quirky and is incredibly thorough. I’ve seen her both through telehealth visits and in person. She has a tiny office in an executive suite but it seems to fit her needs just fine.
She has been gathering as many of my records as she can. Not surprisingly, Lovelace hasn’t been very responsive to her requests or mine. I was able to find and forward my copies of my initial thyroid cancer diagnosis, the pathology report, and the radioactive iodine treatment I underwent. I also sent her, just because I thought she might be interested, the results of the genetic testing I had done in 2019. This was initiated because of my mom’s history of breast cancer at a young age. They tested me for the BRCA genes (along with all sorts of other cancer markers). Overall, all was negative except for two “variants of unknown significance,” one for the BRCA-2 gene, and one for a type of colon cancer seen in juveniles. For the BRCA-2 abnormality, the geneticist recommended I have more-frequent-than-annual mammograms, which honestly I’ve just never follow up with. For the colon cancer thing, since I’m decades past being a juvenile, I’ve just kept up on my colonoscopies as recommended. (More on that later.)
The endocrinologist reviewed the test results from cardiology I had done in 2020 (I don’t even remember what was tests I had, to be honest. I believe I had three things done: an echocardiogram, a something else, and I wore a Zio heart monitor for several days). This was initiated because I was having heart palpitations back when this disease first appeared. But this was likely due to the anemia I was experiencing. After all the testing was completed, I was supposed to go back for a follow up appointment. But I couldn’t get an appointment with him for several months, so I just gave up and asked that he message me if there was anything of concern. I never heard from him, so I assumed all was well. Wrong. Dr. S said that there was an abnormality, “mildly impaired left ventricular relaxation.” She said the Ozempic will help with this and didn’t order any further testing for now, so I’m not worried about it.
She also ordered a repeat bone density scan due to my long-term use of steroids. My last one from three years ago was normal. That’s scheduled sometime in January.
My hair is still falling out at a concerning rate. I’ve always used one of those hair catcher things in the shower drain, but it’s amazing how much it collects now. And when I brush my hair? Ugh. The amount that comes out is pretty alarming.
Kyle and I went to New Orleans for a music festival in October, and I had to wear a hat so as not to fry my noggin. I never had to think about this before. It’s not like I previously had some luscious mane, but damn. Several years ago when I was losing my hair, a change in my thyroid medication resolved the problem very quickly. But as of today, my thyroid medication has been decreased three times, and I’m still heading toward chrome dome status.
Dr. S said she can refer me to a dermatologist who specializes in hair loss. I’m going to give it one more month to see if anything changes, but if not, I will consider going to him. But OF COURSE he doesn’t take insurance, so I will have to pay out of pocket. And I would only consider something topical. I don’t want to take anything that could potentially have an impact on my kidney function.
If the medication changes don’t help, and the dermatologist doesn’t help, I guess my next step is a bald head plus a wig, a scarf, or something. For real. And I think I’m cold now! Wait till all my hair falls out! It’s kind of funny because I just had new light fixtures installed in my bathrooms. It’s very bright in there now. All the better to see my shiny scalp!
We’ve made several changes to my diabetes medications. I’m no longer on metformin but instead on a med called pioglitazone. It’s just a tiny little thing! (Metformin is rather large.) I’m on Ozempic, and I’m slowly increasing the dose once a month. She’s leaving that up to me to change as I want to. Ozempic can cause all kinds of GI issues. I want to avoid that for the obvious reasons but also because with GI issues, I can get dehydrated, which throws my labs all out of whack. So I think in early February I will be at the dose where she wants me.
So far, these two meds seem to be doing a fantastic job of controlling my blood sugar. I really love using the continuous glucose monitor too. It’s so freakin’ convenient to just be able to look at that thing and see where I am. I’ll have a repeat A1C test next week, and I’m not concerned about it like the last time. The doc said she thinks once I get up to a higher dose on the Ozempic, I may not need the pioglitazone. We’ll see.
My blood sugar still gets pretty high the day of chemo, usually in the mid to upper 200s, but it’s lower than before when I wasn’t on these meds. And the high range doesn’t last nearly as long either. So this combo of drugs seems to be doing the trick.
(Strange thing about Ozempic. My endocrinologist said it’s been in use for years. Odd that it’s just making headlines now.)
I had a weird experience while in New Orleans. My blood sugar was incredibly low, usually in the 50s. I felt fine, no symptoms of low blood sugar. And I mean, we were in New Orleans. It’s not like we weren’t eating or eating good food! This lasted the entire time we were there. Elevation-related? Who knows. Once I got back to Albuquerque, all was normal again. I told the doc about this, and she said that since I wasn’t having symptoms, she wasn’t concerned about it. And it hasn’t happened since. I mean I will get an occasional low blood sugar reading, usually while I’m sleeping, but nothing consistent like that.
I saw my oncologist recently and got some REALLY good news. I am now entering my fifth year of chemotherapy. (Hard to believe.) Since everything has been stable for some time, I now get to drop my treatments down to only time per month. We will see if my kidney function holds up with less medication.
I have high hopes for decreasing the medication, and not just for the kidney function. Since it doesn’t seem like it’s the thyroid med causing the hair loss, maybe decreasing the Kyprolis to once a month will help? Maybe the fatigue will lessen? And now that I’ll only have to take the accompanying steroid once a month, maybe the thrush will go away??
[I asked the doc about the dexamethasone which I take only on chemo days. So I was taking 12 mg twice a month and now it will be only once a month. He said that even at the once-a-month dose, it can definitely cause thrush. I also asked him about my immune system, having been on these meds for so long. To my surprise, he said that while Kyprolis is immunosuppressive, the dexamethasone (steroid) is even more so. This I didn’t know. Dexamethasone is pretty potent. I was on 40 to 60 mg of prednisone, and that was DAILY. Yep, it fucked me up and tried to kill me. So I thought 12 mg of dex was nothing. Clearly I was wrong.]
He gave me a prescription for clotrimazole, which I’ve been on before, to treat the thrush. But a) if I have to remain on dexamethasone, I think this is sort of a losing battle. And b), it’s a pain because it’s essentially a lozenge that you have to take three to five times per day. That’s not very convenient, especially with a job like mine where I have to talk all day.
There’s a possibility that maybe some time in the future, I can go off the chemo completely. That would be really exciting but a bit scary because if my kidney function drops, there’s no guarantee that going back on the Kyprolis will have the same effect it’s having now. But like the doc said, we won’t know if we don’t try. He said it’s possible we will kick this damn thing to the curb, and I’ll be in remission. For how long? Who knows. Just so many unknowns.
(I messaged my former nephrologist in Pennsylvania to see if she had any updates on how many known people are afflicted with this disease. When I saw her in 2020, it was around 300 people—in the world. I’m sure more have been diagnosed since then, and I’m very curious about that. But as of today I haven’t heard back from her.)
The bad news I got from my oncologist is that my insurance is already fighting him again on paying for my treatment. The last approval I got from them stated they agreed to pay through the end of January 2025, at which time, the doc would have to submit another request for coverage. But for whatever reason, they were denying claims already in November. (An insurance company that lies?? NEVER!!) So far, he hasn’t told me to stop coming in, so I guess he’s handling it. I told him I still had the number of my case manager with whom I spoke before, and he said to definitely hang on to it.
In October I had an endoscopy and colonoscopy. Wheee! Man. So fun. The endoscopy was due to my having heartburn. But I have to say that has improved significantly. I was concerned because the endocrinologist said that Ozempic (and all those drugs) can cause heartburn but so far, no issues. This isn’t to say I never have it, but it was pretty routine the day of chemo for a long time. Now it’s much more rare. Anyway, the endoscopy was to rule out a hiatal hernia. Turns out they ruled it in. Goddamn. It’s mild, nothing to be done about it. And don’t even ask me what it is. I’ve looked it up before but hell if I can remember.
When I was in the recovery bay (or whatever it’s called) after the procedure, the nurse said the gastroenterologist prescribed pantoprazole to be taken daily. I asked the nurse if this was to address the hiatal hernia at all or just for the heartburn. She said just for the heartburn. I told her I can’t take PPIs daily due to my kidney disease (this is why I only take the omeprazole the day of chemo and the day after). She went back to talk with the doc and said the doc was going to change the medication to something else. I was still a wee bit groggy so I didn’t recall what drug she said. But when I picked up my new prescription at my second home (Walgreens), it was for pantoprazole. Good lord.
When I saw the oncologist, I discussed this with him. He confirmed that the pantoprazole is not for the hiatal hernia, just for heartburn/reflux. He said to just take it when I need it. Now with chemo being only once a month, I will be able to take it less. And it finally dawned on me not that long ago that if I don’t have heartburn the day OF chemo, I won’t have it the day after either. So I stopped taking it those Thursdays if I didn’t have heartburn on Wednesday.
I was very happy to be told I do not have to have another colonoscopy for five years. YAY.
So… I start with only one chemo treatment this month. I’ll repeat the 24-hour urine test in January. This will serve as our baseline going forward with the reduced medication regimen. Hopefully the protein in the urine will remain nonexistent.
I will see the concierge endocrinologist again in January, have a repeat bone density scan in January, see the Lovelace endocrinologist in February, another follow up with the oncologist also in February, and see the nephrologist in March. Man this gets old.
In the meantime, I guess I’ll start wig shopping.
Low, Low, Low 