I’m like Don Quixote

Only the villains I’m taking on are in the healthcare establishment, trying to protect myself and my husband from them. And I think this is a fight I’m presently losing.

So, first things first. My husband called his doctor and they wanted him to keep taking the drugs, without even a dose reduction. J said no. They asked if the side effects were unlivable and he said yes. So he stopped taking it a day early and is giving himself a two-week break to try to recover.

Tomorrow we’re going together to meet with his oncologist. I haven’t met this one yet but I’ve been assured that I’ll be impressed by him—at least in comparison to my husband’s previous oncologist. Meanwhile, I have a list of questions prepared and am afraid I may fall into obnoxious know-it-all mode. I ghostwrite articles for doctors 5 days a week and know my way around a medical journal, so I’m not going to be brushed off with simplistic answers.

On that note, I did finally find the statistics I was looking for about continuing chemo and improvement in survival rates. There’s an overall reduction in death rates of about 35 percent, but that works out to 16 percent at both six and twelve months. They only measure it out to 24 months, where it goes down to a 6 percent reduction in death rates. Overall, it extends life by a median of only 3.7 months total. For quality vs quantity of life, that seems like a not-great trade-off compared to the physical and financial costs of undergoing chemo for years. However, those are 20-year-old stats, so I’m going to ask if there any more recent ones.

I also read that because of how slowly cancer grows, the greatest risk of recurrence isn’t gone until the 3-year mark. You can’t predict that it won’t come back sooner, of course. It’s hard not to be tempted by the idea of having my healthy, functional husband back for three whole years, rather than having him be sick that whole time. But there’s no guarantee that he’ll make it that whole time without becoming sicker.

On the other front, I’m also losing the battle so far with my neurologist about wanting to stay off the scary meds. I told his physician assistant that I wanted to “watch and wait” and revisit the issue in 6 months when I have an MRI, since my disease is stable and I haven’t had a relapse in 2.5 years. She said she thought that was fine but she’d have to check with the doctor.

The doctor pulled the old “you’re depressed and not thinking clearly” card on me and said to come back in a month ready to get on a med, and he specifically recommended Ocrevus. I can tell you that unless I have a relapse in the next month, I’m not going to feel differently.

I want to start taking this prescription low-dose naltrexone, which is supposed to help a lot of people with MS. It’s not a disease-modifying drug, just for symptom relief, and it’s cheap. My doctors won’t prescribe it but I found a doctor in Dallas who will. I was all set to make an appointment with him—but then I found out that he doesn’t take insurance at all.

So at the moment, I’m mostly feeling like I’m taking on the medical establishment on two fronts at once and I’m losing both battles. Maybe I’ll be pleasantly surprised when I meet J’s doctor and maybe he’ll give me hope (instead of handing me a bunch of platitudes that I’ll see through.)

Maybe my husband will get on a better treatment that makes him seem like himself again. Maybe I’ll find some way to try that med that I want or (dare I dream?) find a new neurologist who won’t push the scary disease-modifying drugs on me.

But in the meantime, I feel like I’m in limbo, a most uncomfortable place to be.

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