No earth-shattering news, just a roundup of some miscellaneous things over the past month.
It’s now been two years since my official diagnosis with this blasted disease (“proliferative glomerulonephritis with monoclonal igG3 kappa deposits,” for the record). I still have to refer to the note in my phone when I tell a doc what I have—invariably I forget one word or another. It’s been nearly three years since the symptoms began. I am so thankful to be on this track that I’m on now, even though it’s time-consuming. But better this than dialysis. I’m also very grateful to have found doctors who are willing to deal with this unknown disease.
Interestingly, in the past week or so, an abstract was released (the full article isn’t out yet) of four people who developed this disease after having COVID. Obviously it’s too small of an “n” to say COVID caused the disease, but it will be interesting to see how that plays out in the future. I’ll be looking forward to reading the full article when it’s released.
Last Wednesday, I had my first Aranesp shot since November 17, 2021. THREE MONTHS. Definitely a record since all this started. And my hemoglobin wasn’t even that low; it had dipped just below the 10.0 cut off at 9.8.
I am hoping the Aranesp perks me up a bit. I cannot believe how tired I am. All the time. It doesn’t seem to matter how much I sleep, all I can think about is the next time I get to sleep. I’m glad my job is quite busy so I don’t have time to be tired while working, but by the time I get home, usually after a long drive, there’s not much energy left to do anything.
The neuropathy in my feet continues to improve. It’s still there, as I’m just ‘aware’ of my feet all day long, and they hurt like hell by the end of the day. But the shooting pains and tingling have definitely subsided. I continue to wear my ice gloves/booties with the chemo infusion and hope it works.
And the heartburn. Good lord. When I was a kid, my parents and my brother always had heartburn. I remember the frequent chatter about it (“this is good but I’ll have heartburn later”). I remember my dad mixing the baking soda into a glass of water and (to my horror) drinking it—and the house-shattering belches that would follow. It was constant for all three of them, even when my brother was a child. I don’t remember ever hearing of “acid reflux.” Maybe we didn’t have a name for it back then. Regardless, I never knew what they were talking about. But clearly it was miserable. I hate that I understand the misery myself now!
Two Wednesdays ago I slept not one second of the night. I was so uncomfortable. I didn’t experience the acid reflux although it threatened to rear its ugly head constantly. But the heartburn was there. All freakin’ night. Sitting up didn’t help. Gaviscon didn’t help. I had already taken the omeprazole. I just sat in bed all night feeling sorry for myself. And I had to be on the road at 5:30 in the morning too. It was just a shit show of a night.
This past Wednesday, I drove up to Colorado after chemo since I had clinic there the next day. I would be driving home that Thursday night (about a four-hour drive), which would put me home between 9:00 and 10:00. I was SO thankful to get some sleep that night, or it would have felt like an even longer drive. My friend recommended ginger capsules, so I did take them that night. (Thanks Margie!) I’m not sure if it helped or it if was coincidental, but I’ll try them again next time and see how I fare.
Per the googles, “the cells that line the digestive tract reproduce quickly. As a result, those healthy cells are often affected by chemo – and that’s why acid reflux, nausea, and diarrhea are common chemo side effects.” So there ya go. Luckily I’ve only got two more years of this. (That’s sarcasm.)
Moving on from my whining…
Unfortunately, for the last two weeks my creatinine has increased to 1.6, which brings my eGFR down to 33. It had been hovering in the 1.2 – 1.4 range pretty consistently. Who knows why it’s increased. Hopefully this trend doesn’t continue because it could mean the chemo is no longer working. But we’ll just have to ride it out and see. I don’t know what Plan B is. Actually, that would be Plan… D? I think we’re on Plan C now.
I was supposed to have the consult for my colonoscopy this past Friday the 18th but Lovelace graciously decided to cancel my appointment and reschedule me for the end of April. And for once it was their schedule that kept me from getting in sooner rather than my own. Hopefully it’s nothing serious as it’s been many months since I got the notification that the screening test was abnormal. A person could die waiting for an appointment (I mean, people HAVE died waiting for appointments).
I sent a long message to my nephrologist in Pennsylvania back in January with the most recent updates, specifically the reduced protein in the urine. I suspected she would want to schedule another video visit but nope. Guess she feels things are going along well enough right now. I did tell her I was trying to get off the lisinopril since it raises the creatinine, but she said she wants me to stay on it because it does protect the kidneys. So… I’m back on it. My blood pressure is really good. (And the recent rise in the creatinine isn’t due to the lisinopril.) She did also recommend – without directly saying so – that I get another local nephrologist.
So, that’s what I decided to do instead of continuing with the present doc. I haven’t even seen her or heard from her in over a year now, so like I said before, I think she’s done with me. It was kind of funny when I called the new office: the scheduling clerk asked who my current nephrologist is. When I told her, she said, “Hmmm. We frequently have difficulty obtaining records from her.” I said, “Yeah, I know. It’s one of the reasons I’m changing docs.” Glad to know it’s not just me. She gave me a list of stuff to gather—tests, biopsy results, lab work, etc.—prior to my appointment. Man, getting all those records together just reminded me of the multitude of tests I went through in 2019 – 2020. Crazy. It’s a huge packet of paperwork. There’s no way I’m going to try to fax it all. I’ll just drop it off. And no rush… they can’t see me until June. Again, good thing it’s not anything urgent.
My blood sugar is better on the Trulicity but still high. I messaged my endocrinologist to see about upping the Trulicity but she said not now, ride it out, repeat labs prior to my appointment with her at the end of March. So that’s the plan for now. One of my thyroid tests was abnormal the last time too so I’m sure she’ll be checking that again.
So upcoming I have the endocrinologist, the colonoscopy consult, then the colonoscopy itself, another follow up with Dr. T in May, the appointment with the new nephrologist in June, along with the weekly chemo appointments. I also need to call to schedule a mammogram. I think that’s all. I don’t know if that’s a lot or not; I’ve completely lost my perspective.
I was talking to a guy the other day about health care (don’t get me started), and I said something like “the casual health care consumer…” He asked what I meant by that. I said, “You know, the person who goes in twice a year for a physical or something. No chronic issues.” And it hit me: My god, three years ago, that used to be me! I was a casual health care consumer. It is insane how quickly things can change, and you can find yourself swimming (or drowning) in a system you had little experience with before. It’s a head-shaker.
I saw on my health insurance app that I have two outstanding bills from the cancer center, each for a little over $1200.00. But I’ve yet to receive a bill, nor has the cancer center hit me up for any payment. I’m just going to wait it out. When they tell my I owe them, I’ll pay them. Until then, I’m not offering up a damn thing.
On another note, we got some sad news Friday on our old pupper Arrow. In October he had a large tumor removed that ended up being malignant. Unfortunately, we found out his lymphoma has returned. We suspected it since he was developing another sore on his belly. There is nothing to be done about it at this point. We’ll be changing up his meds for better pain management and to decrease the inflammation, but that’s about it. We’ll keep him happy, spoiled, and as pain-free as possible, until we can’t. He’s still doing well, doesn’t seem bothered by any of this in the least. Happy boy, still engaged in life, still dancing for his dinner. I feel pretty confident he will at least make it to his 18th birthday at the end of March.
Low, Low, Low 