Well damn. 2022. Nothing much more to say about that.
I hope everyone enjoyed the holidays and got some time away from work. I had about a week and a half off, and it was glorious. I didn’t do anything but LOVED not having to get up at dawn’s crack. I also had the last week of the month off from chemo, so that was a nice break as well. But this week… back to the grind of getting up at 5:00. God that sucks.
Everything is continuing to go in the right direction. My hemoglobin was over 11 (just barely, I think 11.2 and 11.1) two weeks in a row. I believe that’s the highest it’s ever been since all this mess started. The last time I was there, it dropped to the mid-10s, which is where it was today as well. So no Aranesp. It’s been about six weeks since my last shot.
My creatinine continues to hover about the 1.3 to 1.5 mark, but on my last visit it was 1.1. That’s actually a NORMAL result. Not normal for a person with kidney disease but like, NORMAL normal. The other creatinine level was 1.3 but I’m choosing to claim the 1.1. My eGFR at that time was 47. Not too shabby. I believe it was 1.3 today, but the results weren’t posted in myChart yet so I’m not sure.
I had my routine thyroid ultrasound done, and it indicated no changes, which is a good thing. This June will be 10 years since my thyroidectomy so perhaps I can consider myself out of the woods with that now.
My endocrinologist also ordered two bone density scans due to the long-term steroid use. She wasn’t terribly concerned anything would be abnormal now, but she wanted a baseline for future comparison. As she suspected, luckily I have no issues with my bones at present.
She also repeated lab work which indicated my TSH is low. This means I’m hyperthyroid. I don’t know if it’s enough that she will change my medication. I haven’t heard back from her regarding the test results. I’ll have to send her a message about that.
The best news is that last week, I turned in another giant jug o’ pee (24 hour urine test), and the protein in the urine was down to 384! That’s truly amazing. Still abnormal, still high, but so much improved, even since the last test in September when it was 909. And before that, it was in the 2000s and even up to 10,000. This is really remarkable. Hopefully it continues with this trend—or even stabilizes here. That would be fine with me.
I had an appointment with Dr. T, the oncologist, today. He was thrilled with the protein results. I won’t need to have another one done for four months when I see him again. He had initially said I would continue on the Kyprolis for two more years, but now he thinks we will see if things stabilize sooner. I asked if things DO stabilize, would we stop the Kyprolis completely or go to a lesser dose for a while and see what happens. He said he really wasn’t sure as there is no “script” for this but will likely consider a taper down approach.
The other factor is if I should start to develop more neuropathy. It seems as though that has improved. My feet still hurt most of the time, but the lightning bolts of electricity that come out of nowhere, make me jump, and hurt like hell don’t happen nearly as often. And so far I’ve had none in my hands. He confirmed that I was using the ice packs during the chemo.
He also mentioned at some point in the future (at least a year from now) repeating the kidney biopsy to see the state of the disease at that time. I’m not opposed to that, but I also understand the significant risk involved. When that time comes, he and I can discuss with Dr. A in Pennsylvania and see what the consensus is. (He had previously mentioned a kidney biopsy to confirm the disease hadn’t morphed into multiple myeloma, but for that one, I had suggested doing a bone marrow biopsy instead. Much less risk. But the only way to determine the status of the kidney disease is through a kidney biopsy, obviously, so I’m sure they can check for both at the same time.)
I finally remembered to ask him the difference between the ISTAT creatinine and the creatinine reported in the comprehensive metabolic panel (CMP). The ISTAT is the one that is available pretty quickly as it’s analyzed at the lab, while the CMP doesn’t usually come in until later because it’s sent out for analysis. I usually see those results in the following one to two days. Per Dr. T, they do the ISTAT for immediate results for those patients where their medication dosage might be affected by their creatinine levels. (This doesn’t include me.) The CMP is more accurate and is typically a little lower than the ISTAT, although I’ve had results where it’s the opposite. But the creatinine obtained via the CMP is the one used to calculate the eGFR, so that’s the one I should go by.
My blood pressure has been really good as of late, so I opted to stop the lisinopril this week to see if the creatinine drops more and of course how my BP responds. Today it was high at the office, but I believe this to be an anomaly. I’ll continue to monitor for another week. If it’s still high, Dr. T wants me to increase the dose of one of the other meds I’m on first before adding the lisinopril back in.
My blood sugar is still high but definitely better since starting the Trulicity. Since I started it shortly before the holidays rolled around, well, I can’t say I stuck to a decent diet the last two months. Lots of desserts and sweets, my downfall. So I’ll stick with the Trulicity now that the holidays are over and see how things progress. There are higher doses of Trulicity so perhaps that’s an option if this doesn’t seem to cut it. I’d certainly prefer that to insulin. I have a follow up with the endocrinologist on March 30th.
I have still put off making an appt with Dr. F, the local nephrologist, because I am debating returning to her or going to a different provider. Initially I appreciated her aggressiveness but lost some faith over time with her not sharing test results with the nephrologist in PA and not returning her phone calls, even when the need was urgent. She also was not behind this whole chemo approach, and, as I’ve said before, I can understand and respect that difference of opinion, as it is experimental and certainly could have gone either way. I don’t relish the thought of starting over with a new provider, but I’m thinking my interests might be better served with someone who is a little more open-minded about this regimen. (Honestly, I really like the other doctor in Dr. F’s practice whom I saw a couple times when I was in the hospital. He also did my initial kidney biopsy. But it would be rather awkward to change to him at this point.) I have the name of a nephrologist who was recommended to me by a renal case manager with whom I work at one of my clinics. So… I’m still considering. I don’t know him, of course, and there’s certainly no guarantee what his opinion on things will be. Not that that would make me change my course of treatment, certainly, but I would prefer someone who is willing to consider the option. I haven’t yet even confirmed he takes my insurance but most likely he does.
I feel pretty decent lately, other than continuing to be cold all the time. I really despise this. I used to enjoy being cold (for reals). But now? Forget it. I’m tired of wearing a jacket and a sweater IN MY HOUSE. I now spend most of my time in the guest room because it’s about 10 degrees warmer than the living room. Yes I have the heat on. No it doesn’t keep it warm enough for me. I was thinking the other day as I was looking at the Placencia (Belize) page on Facebook how lovely it would be to live in the Caribbean. Not in the summer months when it’s blazing, but for now… in the heat with the water right there? Yep. Count me in. You can’t hear it, but I’m wistfully sighing right now.
I’m still tired all the time but now I think that’s on me. For so long, I couldn’t do anything because I was so tired, but now I think I’m so tired because I’ve done nothing for so long. So I guess I gotta do something. I’d REALLY like to get back to the pool to swim but … I don’t know. Being in an enclosed, warm, humid environment seems ill-advised right now. I’ll have to figure something else out.
Monday I went to Walgreens to pick up several prescriptions. First of the year. The out-of-pocket clock has restarted. I planned to use my “MyBlue Wellness Card,” a debit card I have from BCBS that they put money on for things like sending in a copy of my COVID vaccine. *Boom* $50 added to my card! Hey, I’ll take it! Anyway, whipped out the card… and the total for my prescriptions was zero. Hmmm. I didn’t question it, just grabbed my bag of pills and ran. Okay, I didn’t run. Let’s get real. I moseyed. Strolled leisurely. Today at the doctor, no $40 copay. Didn’t ask. Just sat the hell down. I don’t know what the deal is, but I feel I did my part by asking about it once, and I’m not going to ask about it again! (I did, however, revamp my budget to make sure I have enough to cover my out-of-pocket costs because I just know at some point, they’re gonna want their money.)
Oh my god. I just this second looked at my BCBS benefits summary, and my out-of-pocket expense has gone from $5500 to $6500!! Guess I should have looked at that BEFORE revising the budget. Gotta find $82 more a month. Geez.
I don’t really understand that whole thing anyway. For last year, it says I met my out-of-pocket and that I paid $9220.00. First of all, I didn’t even pay the full out-of-pocket cost of $5500.00, so I surely didn’t pay $9220.00. And if my max cost IS $5500, why the hell would I pay $9220.00?? It’s all confusing. But I’m just gonna let that go.
There’s my long-winded update. Upcoming is the colonoscopy consult, then the colonoscopy itself, whenever that gets scheduled, a mammogram, a follow up with the endocrinologist, and of course my weekly chemo appointments. (Living the dream, huh? Don’t be jealous.) I sent the nephrologist in PA a long message today updating her on everything, and I suspect she will want to schedule a follow up with me as well. But maybe not. Maybe she’ll feel things are chugging along well enough at present. You’ll hear from me if I have anything interesting to report. Could be a while!
I hope everything is well in your neck of the woods.
Low, Low, Low 