53 One Step Forward and Two Back.

Yeah, you might say that I’m feeling less full of possibility and life today than I did a few weeks ago. I’ve written about this already so no use going over it again in detail, but it’s worth mentioning that a few weeks ago I seemed to have a breakthrough in my chemotherapy. I suddenly got more energy and was able to do physical activity like I had not been able to for months before. That was great. My lab results kept coming back suggesting that the multiple myeloma was getting beaten back. My lab results are still great. So, lots of reasons to be optimistic, cheerful, even. Then this happened:

A couple of weeks ago I started developing excruciating pain in my back and legs. Well, I’m no stranger to back pain. I’ve had back and kidney surgery, enough to leave me with chronic pain and I have arthritis and degenerative disk issues. I have lots of reasons to have back and leg pain. Besides, I’m seventy-three years old! But, this was different.

Pain from arthritis, degenerated disks and muscles can usually be mitigated by stretching, heat, that kind of thing. The pain I’ve been feeling for the past two, going on three, weeks is not affected at all by the kinds of therapy I would normally have applied to pain. This pain doesn’t originate in my muscles or in my bone. This is neurological pain and its cause is most likely one of my chemo drugs, bortezomib. This is the kind of pain that won’t allow me to sleep. This is the kind of pain that pushes me to double or triple my intake of opiates (hydromorphone), leaving me muddle headed and even depressive.

It’s true that the intense pain I felt a couple of weeks ago has attenuated to some extent so that I can now try to cut back on my pain meds to some extent. Still, last night after taking a pretty hefty dose of hydromorphone, I had to take even more because the pain just wouldn’t allow me to sleep at all after 2 AM. It’s evening now and I’m just now getting over my opiate hangover from last night. Tonight I will take half the dose of hydromorphone I took the last night, but I’ll also take acetaminophen because that seems to subtly help dull the pain as well. If I have to, I’ll take more hydromorphone, but grudgingly. I have reason to want a clear head tomorrow.

So, the reason I know that bortezomib is the culprit regarding my back pain is because I had a meeting with my oncologist in Victoria by phone last week and he’s the one who brought it up. He also indicated that he would communicate with my oncology team here in the Comox Valley to tell them to reduce my bortezomib dose from 1 mg/m² to .7 mg/m². I’m still waiting for that to happen but I’m hoping the reduction is cleared before my next injection on Thursday. There’s no guarantee, but the reduction in dosage may result in a reduction of my pain levels. That would be nice.

Okay, I’ve written about one step back. Now for the other step back. Once a month I get an infusion of a drug called zoledronic acid. It has a number of side effects: This from a website:

In rare cases, zoledronic acid may cause bone loss (osteonecrosis) in the jaw. Symptoms include jaw pain or numbness, red or swollen gums, loose teeth, or slow healing after dental work. The longer you use zoledronic acid, the more likely you are to develop this condition.

Osteonecrosis of the jaw may be more likely if you have cancer or received chemotherapy, radiation, or steroids. Other risk factors include blood clotting disorders, anemia (low red blood cells), and a pre-existing dental problem.

Other side effects include severe pain in the joints, bones, and muscles. Jeez. The main benefit of zoledronic acid for me is that it may prevent the lytic lesion in my right femur from getting bigger or just spontaneously breaking my leg. So, the oncologists carry out a cost/benefit analysis and they prescribe drugs based on the best possible outcome.

Now, however, I’m feeling some sensitivity in my jaws, both upper and lower teeth. That is very concerning to me. My oncologist suggested I consult with my dentist again and I’ll call his office tomorrow to see if I can set up an appointment, as reluctant as I am to do so in Covid Times. I’m not sure what he can do, however. I’m not sure the damage can be reversed, and zoledronic acid is not a drug one can stop cold turkey. I always prided myself on keeping my teeth in top shape and now I’m hoping to just keep them!

I called this post “One Step Forward and Two Steps Back”. The two steps back are about my experiences with bortezomib and zoledronic acid. The step forward is that the myeloma in my blood is pretty much gone. The course of treatment I’m on is very successful for me. I’m loathe to go off of it and so are my oncologists. So what do I do? I have another 18 weeks of chemo before I go off of it for who knows how long. I will go into remission but I’m also guaranteed to relapse. Only time will tell how long I’ll be in remission. It’s also guaranteed that I will die in the foreseeable future, even if that’s not for another ten years. Judging by how fast time has passed getting me to 73, I can only imagine that ten years will go by pretty quickly.

Is all the pain I’m experiencing now worth it? The existential questions about life and death still haunt me. What the hell difference will it make if I live another ten years or not? Whatever. Then I make a video about Carolyn’s gardens and we’re getting a puppy. What does that say about me and my questions?

I just hope I get some sleep tonight.