Yikes, it’s been ages! There’s a fair amount to catch up on.
First up, pills. I’ve been trying to cut down on all the medication I take. I was taking five pills in the morning but now I’m only taking two. I gradually stopped taking two of my three blood pressure meds (and my blood pressure is just fine on just ONE pill, my beloved lisinopril), and I am taking a break from one of my allergy pills. So far, so good. In the past I have had pretty bad allergies, so we’ll see how it goes with just taking the one pill at night. If they start getting bad again, I’ll try going back on the bee pollen first. But for now, I am just taking the one BP pill and my thyroid medication in the mornings (except on chemo days when I have to take the steroid dexamethasone and omeprazole).
Not much I can do about the nighttime meds. Only one is prescription, for cholesterol. But then there are two vitamin D pills, the OTC allergy pill, the alpha lipoic acid (nasty!) for the neuropathy in my feet, an iron pill, which then requires that I take vitamin C and folic acid. But I was happy to dump three pills.
At the end of August, on my week off, I had a slew of appointments. I LOVE spending my vacation time going to doctors. Nothing thrills me more.
Monday I had two appointments. Lucky mel! In the morning I had a quick appointment at the dentist to get my permanent crown glued in, then at the end of the day I had a video visit with my endocrinologist. My appointment was scheduled for 4:00. I knew she would be late because she’s always late. I also knew that regardless of the information I entered through myChart for the “e-check in”, I would still get a call from the doctor’s nurse telling me that the information “didn’t transfer over.” How did I know this? Because every single time I have an appointment with the endocrinologist, this happens. I asked her this time why I need to do the whole e-check in process if she still has to call me and get all the same info. “Oh no, you still need to do that.” The “why” part of that she didn’t have an answer for. Whatever.
So around 5:00, the doctor came on the visit. She was profusely apologetic for being an hour late. I wasn’t mad or anything, because, like I said, I expected it. I also understand the system and how good doctors are the ones who run behind because they know they need to spend more than the allotted maximum eight minutes per patient the medical groups want them to spend. (More patients = more money, even if it also equals poorer care. And even if it drives good doctors away.)
She was overall pleased with my lab results, although she’d like to eventually cut down on my thyroid medication. If I remember correctly, long term use of levothyroxine can increase the likelihood of osteoporosis (as can long term use of steroids, which I’m also on). But in order to reduce the dose, I need to lose weight. So she upped the dosage of my Trulicity, which I didn’t object to, but that’s not going to make me lose weight. Maybe if I stop eating like a 12-year-old whose patients went out of town for the weekend, I’d lose weight (that line was stolen from a “Roseanne” episode from back in the day). Seriously, I have terrible eating habits. I mean, I can try to eat better, but I’m 55. I don’t see a lot of change in my future.
She said next time I’ll see her diabetes educator, then the time after that I’ll see her. It will rotate like that from here on out unless anything comes up. A couple weeks ago I got a call from radiology that I had a referral from her for a routine ultrasound of my throat/neck area to make sure there’s no recurrence of cancer. So that is coming up in November.
Sometime early that week I saw the results of my kidney biopsy. I’ve learned a lot about the kidneys and kidney disease but that doesn’t mean I can interpret the report on the biopsy. But the thing that stuck out to me was the phrase “limited sample” which occurred more than a few times. It did say that the results were not significantly improved compared to the previous one done in October 2020. But it did note that there was some improvement. They look at several different indicators, none of which I could list right now. It’s all a mystery to me.
Wednesday I had chemo and saw the oncologist, who had also gotten the results. He asked if I’d seen them, and I said yes but that the only real take-away I got was the “limited sample” stuff. He said yep, not enough material was obtained, but it’s too risky to repeat to try to get a better sample. He also said that even though there wasn’t a huge improvement, there was enough for the insurance company to approve continuing my treatment. That’s really the important thing because I had been getting nothing but denial letters for the past two months, stating that BCBS was not covering my chemo because there was no indication it was helping. So… for now we stay the course, chemo every other week. It’s disappointing because I was really hoping the results would show a big enough improvement to cut back on the chemo. I should know by now not to get my hopes up.
I talked to him about my stopping the other blood pressure pills. He’s fine with that since my BP is fine. He would like me to get down to taking about 10 – 20 mg a day vs. the 40 mg I’m taking now.
The next day I saw the nephrologist. He showed me the slides from the biopsy and went over it in more detail. In some of the slides, it was obvious there were still lots and lots of abnormal protein cells. But in other slides, at least according to the doc, there was a decrease in … I don’t know … something. To me they looked like fluorescent green worms. So, again, no major changes, keep on doing what we’re doing. For how long? I don’t know. I assume I’ll have to have another biopsy in the future if the insurance company wants “proof” again at some point. I don’t understand all this, clearly, but I don’t get why the dramatic decrease in the protein in my urine isn’t at least SOME proof to them that things have improved. Not to mention the fact that I’m not on dialysis. But I assume that for this particular drug, Kyprolis, they have certain markers they are looking for. But again, I don’t have multiple myeloma so I probably won’t have the markers they’re expecting. Don’t ask me.
I told him what the oncologist had said about trying to decrease the dose of the lisinopril. He basically waved that off. “40 mg is fine.” But I may try cutting down to 20 mg to see what that does.
The week off wasn’t ALL doctors’ appointments. Rose came out for the week, and that was great! We hadn’t seen each other since literally the weekend before the pandemic lockdown started. We both flew to LA for our other friend’s mother’s 95th birthday celebration, and we returned on March 15, 2020. I worked two more days, and that was it for five months. It was so good to see her and visit. We travel together a lot but obviously that hadn’t happened in a long time.
We had a gathering at the beginning of her visit for Kyle’s band and had one at the end of the week with a different group of people for my mother’s birthday. We took a scenic drive up Highway 4 and took the pups with us. I hadn’t been up that way in quite a long time, and we picked up a great day to go; it was really beautiful. Another day we rented a private pool for a few hours. That was so much fun! I hadn’t been in the water in such a long time (November of 2019, to be exact), and I really missed that. The night before she left, Kyle’s band had a gig, along with two other bands, and that was hoot. We also just had a good time hanging out, getting caught up, and eating good food. Hopefully we’ll be able to take a trip together soon.
I got a notification on my phone about a week ago that I had a new bill from Lovelace. Usually they are for like $1.47 for an outstanding lab fee or something. Imagine my shock when the bill was for $15,428.00!! AND, if I couldn’t pay it all at once, they kindly informed me I could pay the small amount of $2204.00 for the next seven months.
Well. How convenient. I called them yesterday. It was for three claims, going back to January of this year. She said that for some reason, they had been submitted to my BCBS dental insurance, which of course denied them, so they were being resubmitted to the BCBS medical insurance. I knew it was an error but it still is pretty heart-stopping to see a bill of that amount. Once I got over the shock, all I could do was laugh. And post it on Facebook.
Well, we did it. We finally went on a vacation that wasn’t a road trip! We went to Placencia, Belize. I have been there before, and it’s a lovely place. The people are so nice, it’s easy to travel to, the food is amazing, and it’s beautiful. Because it was the off-season, there were very few tourists. I literally had beaches to myself the vast majority of the time. We took a boat ride out to an island, and there were only three of us on the trip. I basically had a whole island at my disposal. It was so wonderful to be in the water, swimming, snorkeling, just floating in the ocean. We were there for a week. It flew by like I knew it would, but I was so happy to be there. Times like this I wonder how I wound up in the desert. I belong in the water! I hope it won’t be too long until I’m in it again.
Next week… back to work and back to chemo on Wednesday. Because we were gone on my regularly scheduled week, I will have had a break for a month. Can’t complain about that. But I won’t be surprised to see my creatinine higher than it’s been.
This is a great time of year. I love that it’s cooling off, all the trees are turning colors, and with all the holidays between now and the end of the year, my work schedule is somewhat easier. But for now, vacation is just about over, and it’s time to get back into the routine.
Low, Low, Low 