For about the last five days, I’ve had some really bad back pain. I’m not sure what I did to it, but I was having pretty consistent spasms that were debilitating while they were happening. I spent most of the weekend laying on the couch feeling sorry for myself. I kept thinking every day that they would get better but if there was any progress, it was slow going. I was worried because yesterday I had to drive down to the southern part of the state for work, and I didn’t think a 3.5-hour drive would do my back much good. Tuesday night I had so many spasms while I was trying to sleep so I thought that wasn’t going to bode well for Wednesday. But amazingly, I felt so much better when I woke up! I guess maybe it got all out of my system the night before.
I think I’ve said this before but whatever pain I’m experiencing is always the worst pain I’ve ever had. Plantar fasciitis? The worst. Pinched nerve in my neck? The worst. Neuropathy? Okay, not the worst, maybe just the weirdest. This back pain? Pretty damn bad, but I think the pinched nerve really was the worst. But it’s amazing how pain can just completely change my personality. I get nauseated, depressed, and just want to be left in a corner to rot.
Years ago when I worked in the Bay Area, we would occasionally make home visits to an elderly patient who lived in San Rafael (Julie, do you remember this?). Julie and I both went to see her at different times, and Julie remarked that she wasn’t very friendly. I was surprised. To me, she always seemed very grateful that we would come to her home, and she was very nice… until she wasn’t. We realized her personality just depended on how much pain she was in on a given day. Understandable now. But we were young and dumb then.
I’ve had chronic neck pain from my teenage years. Pretty much daily. I’ve gone to chiropractors in the past, had MRIs, etc. At some point since I’ve been in Albuquerque, I was diagnosed with mild cervical foraminal stenosis, which is probably what caused the pinched nerve. Way back in 1993, I had graduated from grad school, had no place to live, had no job, and had no money, so it was the perfect time to go on a road trip. I went with my friend Chi up the west coast from northern California into Canada. We were camping so it was a pretty cheap trip. One morning, after sleeping on the ground in a tent, I woke up and just felt really weird. Kind of off balance and just not myself. Something wasn’t right. It took me a couple hours to realize my neck wasn’t hurting. I was glad of course, but it hit me that I’d had that pain so long that when I didn’t have it, it registered as something being wrong with me. That was an eye-opener.
But… the back pain seems to have passed so hopefully I can get on with my life. Such as it is.
I went to the oncology lab yesterday for my shot and infusion, and I also had an appointment with Dr. T, the oncologist. The schedule was all messed up. For some reason they had me scheduled with him at the very end of the day. I knew there was no way I would even be out of the lab in time for that appointment so I told the receptionist that if he just wanted to come into the lab, that was fine with me.
The nurse was waiting on my blood work results. I mentioned that my creatinine had increased to 2.3 the last time I was there, and we also discussed that my hemoglobin wasn’t responding as well to the Aranesp as it had in the past. When my labs popped up, she looked over at me in a way that told me something wasn’t good. I thought she was going to say my hemoglobin was in the 8s again but nope, it was worse news than that.
My creatinine had jumped to 3.6. SHIT. Definitely not good. Last September when it was 3.9, they put me in the hospital for four days. I wasn’t doing that again. “We’ll see what the doctor says,” she told me.
And of course my hemoglobin was low but not in the 8s, thankfully. It was 9.2. So another Aranesp shot.
While she was giving me the Kyprolis infusion, we started talking of course about medical care here. She said she was from Colorado, and the primary care doctor she sees is still in Colorado. She said she won’t give her up because the medical care here is so spotty. “They don’t return phone calls, there’s a revolving door of docs. No thanks. I’ll just go up to Colorado when I need to.” Yep. I totally get it.
Dr. T did come in to the lab, and the first thing he told me was that the New England Journal of Medicine had a recent article in it about my disease. Hey! I’m moving up in the world! He gave me the name of the article, which I found but have not yet had a chance to read thoroughly.
He was concerned but not overly so about the increase in the creatinine. “I’m convinced this is drug-induced.” No plans to put me in the hospital. Thank god. But lots of medication changes.
We’re stopping the Revlimid. This is the chemo pill that’s related to thalidomide. I’ve been on it for all of three weeks. Since I’m stopping the Revlimid, I can stop the Eliquis, which is the blood thinner/anti-clotting drug because Revlimid can cause clots. [Naturally the Revlimid shipped yesterday and was delivered today. At $1000 a pill, maybe there’s a black market for this. KIDDING. I mean, birth defects and all.]
No more Lisinopril. As I mentioned before, I was going to stop that for two weeks anyway and see how my blood pressure was without it since it can raise creatinine levels.
No more Bumex, a diuretic. Again, I had already planned to stop that for a while too to see how the swelling was. It’s SOOO much better, thanks to the thyroid meds being adjusted (I believe). And diuretics, while they can lower blood pressure, can worsen kidney function.
And I’m stopping another BP med called nifedipine, which of course I just got a refill on. This can also cause fluid retention so we’re going to stop this as well and monitor the situation.
The blood pressure med I’m on is metoprolol once a day unless my BP is high then I’ll take it at night too. But I really think with so much of this fluid gone, my BP is going to be fine.
I read him off the list of my other meds (thyroid stuff, allergy stuff, iron, vitamin D, etc.) but he said all of those were fine. He basically wants to start with a less complicated slate and go from there. “I created this mess so now I gotta get you out of it,” he said. I got the sense that he’s not 100% sure it was the Revlimid but maybe some of the other meds, or maybe the other meds in combination with the Revlimid that caused the creatinine jump. This makes sense to me because I’ve been off the Revlimid for a week, and my creatinine was still really high. But he feels pretty strongly that within two weeks, we’ll see a good drop in my creatinine level. Maybe it’s possible I’ll go back on the Revlimid at some point. Not that I necessarily want to, but I just got that feeling.
He said the protein in my urine continues to drop (at the last 24 hour collection it was 2 grams, still high but better), and he said he could just see that I looked better—the swelling in my face has improved a lot. He reiterated that he feels strongly this is not actual kidney function deterioration because if it were, we’d see an increase in the protein in the urine. I really really hope he’s right. So I have another giant jug of pee to fill for a 24-hour urine collection, and I will keep my fingers crossed that at the very least, there’s no significant increase in the protein.
He said, “It won’t be the Kyprolis causing the rise in the creatinine. Or if it is, you’re the first person in the world that’s happened to.” Good lord, don’t say that. Just my luck my kidneys will consider that a challenge.
He also said that the article from the NEJM listed some different alternative treatments if the course we’re on now doesn’t pan out. He said “This disease is very closely related to multiple myeloma. That’s why the Rituxan [last summer] didn’t work. I’m looking forward to reading it.
Over the weekend I’ll have to type all this up and send it to Dr. A in Pittsburgh. She will definitely be concerned about the creatinine jump, no doubt. But we’ll just have to wait a bit and see how things work out.
Hemoglobin: 9.2
Creatinine: 3.6
GFR: 19
under the damn thing when a spasm hit and no one could read my lips!
Low, Low, Low 