It’s My Party and I’ll Cry If I Want To

I know quite a bit of what I post is repetitive information, so we’ll get that over and done with first:

  • Feet: still bothering me.
  • Fatigue: yep, still tired as shit pretty much most of the time.  I feel like I could sleep for a week, and I’d still be exhausted.
  • BP: waaaaaay better. Wednesday at the clinic it was 115/73, and today it was 117/79.  Yay!
  • Eyes: better, the hemorrhage finally cleared up. Still a little swollen but much better.
  • Overall swelling: continues to improve.
  • Wednesday night insomnia: yep, still there.   

Wednesday when I went to the clinic, I ran into Dr. T in the waiting room. I told him I was planning on messaging him later that day about my feet. He said it’s time to think about stopping the Velcade and trying Revlimid, which is a pill (vs. Velcade, which is shot). I told him I had a video appointment with Dr. A (the PA nephrologist) on Friday and would ask her about that as well. I have an appointment with Dr. T in about three weeks, and he’ll make whatever changes he’s planning at that time.

He said something like, “It’s obvious it’s multiple myeloma.” Those were not his exact words, and of course I didn’t know he was going to say something I needed to pay attention to.  I don’t have multiple myeloma (the bone marrow biopsy was negative for this, and they test me for it weekly through some sort of “light chain” tests, whatever those are). I think what he was saying is, my disease is responding as though it’s multiple myeloma. This is a good thing.

It was a long afternoon in the clinic Wednesday. It seems like once a month or so they have to re-up everything and get approval from the doc to release the medication. No biggie. They have very comfortable chairs there so I took a wee nap.

Amazingly, my hemoglobin was 10.1 so still no Aranesp shot needed! That was officially six weeks without a shot. Likely I’ll need it next time since I’m sure I’ll dip below 10 by then. I would LOVE it if I can get back on that every-six-week cycle.

Monday I was cutting my hair, and I noticed when looking at the back of my head how THIN my hair is! I can pretty much see my scalp! This happened once before when my thyroid meds were too high so I messaged my endocrinologist today, and she put in an order for more blood work. I don’t actually think that’s the case because if the dose were too high, I wouldn’t be this sleepy.  But I don’t want to just assume it’s normal. My last endocrinology blood work was done nearly a year ago.

I read up more on Velcade, and while it doesn’t cause the ‘typical’ hair loss one thinks of with chemo, it definitely can cause “hair thinning.” (Although I think there’s a somewhat fine line between hair loss and hair thinning!) I asked the oncology nurse about it Wednesday as well. She said it will thicken up once I’m off the Velcade but that the Revlimid can cause thinning hair too. Great. I’d better buy a hat or two so I don’t sunburn my brain cells.  (I mentioned before that the Rituxan I had over the summer in PA changed the texture of my hair, although I didn’t notice any hair loss. Maybe I just have weird sensitive hair. I mean I definitely have weird hair.)

My video visit with Dr. A in Pittsburgh yesterday was good and informative. She’s decreasing some of my meds, which is great. I’m currently on one diuretic, and she’s cutting the dose of that in half. I also get to stop the Bactrim, which was the broad-spectrum antibiotic. Since I’m no longer on the prednisone, I no longer have to take the Bactrim. She did say I’m still at risk for infections/illness because of my compromised immunity but Bactrim can affect kidney function so better to be off it than stay on it. And I only have to take the omeprazole Wednesdays (when I take the dexamethasone) and Thursdays.  It can also affect kidney function.

(Several months ago I started putting all my medication changes into my google calendar with its own green color code. While it’s made for a very colorful calendar, it has come in handy many times when she or another doc has asked about this med or that. I can pretty quickly pin-point exactly when I started/stopped or changed the dose of.)

After Dr. T makes whatever medication changes he plans to, I’ll go to every other month for the 24-hour urine collection (instead of monthly) yet we’ll do a random urine check monthly. I asked her about the difference between the blood creatinine levels and the urine creatinine levels. She said the blood creatinine levels are more accurate (although I can’t remember why now). That’s good since my blood creatinine is historically better than the urine creatinine.

I told her about the fatigue and the joint pain in my knees. She agreed that it could be adrenal insufficiency. I told her I had emailed my endocrinologist today and will be getting the blood work done this coming Wednesday. Depending on those results, she’ll order tests of my adrenal gland function. She’s also going to order a “renal panel,” which I guess we haven’t done in a bit. This will include checking my vitamin D levels and my parathyroid hormone levels. (There was a point at which the levels were so low my local nephrologist thought the lab got it wrong. Then with the following test it was really high. So who knows what the hell was going on then. Or possibly now. Although my calcium has been in the normal range, and the parathyroid hormone affects calcium levels. It’s all one giant puzzle. Thank god I didn’t pursue becoming an endocrinologist!)

She wants me to start taking my blood pressure lying down, sitting, and standing, to see if there is any marked difference between the readings. She asked me more than once if I’m feeling dizzy or lightheaded, signs of adrenal insufficiency. Nope and nope.

I asked her about the dexamethasone. I only have to be on that while I’m getting the Velcade so once I stop that later in May, I can quit that steroid as well. It will be very nice to have all them damn steroids out of my system! She said with the dexamethasone, I don’t have to taper down like prednisone; I can just stop.  Amen.

When I told her about the foot issues I’m starting to have, she mentioned a “cousin” to Velcade that doesn’t have the neuropathy side effects called daratumumab, although she said she’s not sure my insurance will cover it. I told her, “Joke’s on you! My insurance isn’t covering ANY of this.” Okay I may have left the “joke’s on you” part out. I told her of Dr. T’s plan to use the Revlimid, and she said that might be good to start with, and then if needed we can switch to the daratumumab. The advantage of Revlimid is that it’s a pill; the daratumumab is an infusion, although I don’t know how often it’s needed. It’s also frequently used in conjunction with dexamethasone. Gah. Just can’t get away from that crap!  We’ll just see how things play out.

I told her I haven’t heard from Dr. F, my local nephrologist, since my hospital stay in November.  She asked me to get in touch with her and schedule an appointment with her in a couple months. She said it can be problematic if I don’t have a local doc here to handle an emergency should I have one, or order tests that Dr. A can’t order from PA. Makes sense. I’ll also send her screenshots of my most recent lab results—although the last time I checked, she hadn’t read a message I had sent to her several months ago.

Dr. A had nothing but glowing things to say about Dr. T, the oncologist, and how well he communicates with her. Good to hear.

I asked her if she currently has any other patients in her practice with this disease (the acronym of which is PGNMID). She said including me, she has three. She also said she is part of an international research group, and out of 30 centers around the world, they have 110 patients they are collecting data on. That’s it. 110. Obviously there are others out there who have not been diagnosed yet, but that’s still an incredibly low number.

Slightly off-topic: I just started listening to a ten-part podcast called “The Cost of Care.” I’ve only listened to the first three available episodes, but I think it will be right up my alley. They’ve discussed why the costs of healthcare in the US are so much more than other countries around the world, and how we’re not getting a good return on our investment as indicated by longevity studies, infant mortality rates, etc.

They gave one example of an ER doc who got a COVID test at the ER where he works because he was feeling under the weather.  He got an EOB for the visit for over $12,000! For a COVID test! And his insurance just paid it, no questions asked!! Talk about upcharging—another thing they talk about in the podcast. Check it out if that’s of interest to you.

Hey, my birthday was Wednesday! The big 53! Nope, I did not have a party, and nope I did not cry, nor did I want to. It’s also my friend Angela’s birthday tomorrow.  She is the founder of NMDOG, a statewide anti-chaining dog rescue organization. Please check them out and make a donation if you are so moved. She and NMDOG work miracles. I’ve seen it firsthand.  I’ve also been lucky enough to have adopted three amazing NMDOGs and fostered several others. They’ve changed our lives for the better. You can find more information here:

Hemoglobin: 10.1
Blood creatinine: 1.7
GFR: 34

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