Have mercy

Right now I feel like I’m very much at the mercy of both the medical community and fate itself.

My husband starts his new three-year regimen of chemo tomorrow and I am full of worries. Since this is a pill form of the same drug he took before in IV form, I don’t know if he’ll respond the same way. He responded pretty well to the IV form, all things considered. The pill form is supposed to be easier to tolerate, but I also know that it has some different side effects. And the damage and risk to your body increases the longer you take it…and so does the possibility that the drug will stop working because you become resistant to it.

But I’m worrying about a million little what-ifs. What if he’s one of the ones with a fatal reaction to the drug?

What if I’ll be rushing him to the emergency room in the next few days for a heart attack (a not-uncommon side effect)?

What if the fact that the doctor hasn’t ordered anti-nausea meds yet means that he won’t and my husband will be incredibly sick (and then may possibly have to be hospitalized for that?)

What if the fact that we can’t afford our $4,500 copay (not a typo) for tomorrow’s treatment means that he can’t get the treatment at all?

What if the fact that he’s currently in a state of no evidence of disease means he could go on and be well for a while, rather than going through three years of chemo? Why can’t he spare his body from becoming resistant to this chemo now and just wait for the likely inevitable recurrence and treat that when it comes back?

Even if the doctor says there’s a 70-80 percent chance of recurrence, he didn’t say when because nobody can predict that. My husband could be well for the next couple years without the continuous chemo.

What if he’s not able to work anymore and we can’t afford to keep living where we are and have to move while he’s weaker and so am I?

What if he won’t make it through these three years at all–there’s no guarantee that he will–and this marks the beginning of a miserable end?

What if what if what if. I can what-if myself into paralysis and nearly have. But I’ve noticed that this is a state I’ve frequently been in regarding my MS as well. If everything seems fine and normal now, why does either of us have to use these risky sledgehammer drugs to prevent some future worsening that we don’t even know for sure is coming? Denial may be naive but at least it’s more comforting.

Financial worries also abound. We’re already starting to pay on our back taxes from my freelancing and we’re having to help our daughter cover her car insurance, so I don’t know how we’re supposed to come up with an extra $9,000 for our annual out-of-pocket maximum healthcare expenses. My income got cut a little as it is. Then if he ends up starting that new job (which is up in the air but still in play), we’ll have to start over with all new copays again.

My worries about MS are in the back of my mind, too, though MS seems so trivial compared to cancer. Like it’s worrying about a hangnail in comparison. I tentatively decided maybe I will go on a stronger MS med if my current one doesn’t work out. (You’re not mistaken if this seems like a course reversal; it is and it’s largely motivated by my fear of the unknown.)

But then I read bloggers who went for the most aggressive treatments and still progressed to needing a wheelchair, some even to death, by their mid 50s. The uncertainties make me more afraid.

Things have been so normal and so good in the past two months since he’s been off chemo. It almost feels like our old life again. In many ways, it’s been better than our old normal because we have that whole sense of “life is precious” urgency.

I don’t like that it has to change, that I have to step out of comfy denial land back into the world of the fearsome unknown where I have to be strong and brave. I just want to stay in this calm, normal zone for a little bit longer. I’m not ready for whatever’s next.

1 Comment

  1. skinnyhobbit says:

    No one can relentlessly stay strong and brave for days, weeks on end. Compassion and love to you during this difficult time. It’s definitely tough to have so many valid worries, and human brains are wired to hate uncertainty!


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