It’s (not) infusion day

And I’m having my damn soufflé, anyway, so take that Great Scott. Take that. 

Instead of my infusion I got to sign the paperwork for the new goo. Three signatures. No giant black type telling me “THIS COULD KILL YOU” on any of the pages (good sign). New order for blood work since there’s a one in 200 chance I have hepatitis B and would therefore need to pay close attention to my liver functions (“we’ll get you approved either way…it just makes things complicated,” said TGS). I knew I wouldn’t avoid the needle completely today. I just knew it. 

This extraordinary exchange happened:

TGS: We’ll stay in touch over the next couple of months. We don’t want you to relapse. 

Me: Well. As we’ve discussed and agreed to before, I’ve never actually gotten to that whole remission thing yet so I’m really hoping it doesn’t get too much worse. I need to function. 

TGS: If that happens we may consider steroids. 

Me: I know you insist there is no difference but oral steroids don’t work so well for me. IV steroids are the only thing that has ever made me feel better. 

TGS: I’m sorry but you’re just wrong. The studies – there are many studies, prove that they are exactly the same. 

Me: Ok then, so my actual experience with both methods means nothing?

TGS: Listen, some patients think what they think. You think eating ice cream makes your pee orange so that has to be true. It’s just not. 

Me: Didnt you tell me last time I saw you that physical lesions on my MRI aren’t indicative of how my disease is progressing? Didn’t you tell me that the ‘way the patient experiences and reports their symptoms’ is the best tool you have for evaluating my disease progression?

TGS: Yes, yes I did tell you that. 

Me: But my actual experience with oral steroids versus IV steroids isn’t relevant? How is that different?

TGS: Well, in that case, you’re just wrong and I’m right. That’s all there is to it. (Laughs)

Oh. Well then. Consider the gauntlet thrown, Great Scott, challenge accepted. I will be googling studies to prove you wrong in every second of every day where I am not either sleeping or working because I really hate when someone tells me “you’re just wrong.” Even when that someone is The Great Scott. What I actually said to him after this last statement? 

“Well whatever. You could be wrong too.”

He laughed. Then he started quizzing his student, Aviva, random questions:

TGS: How do mononucleotide blah blah stuff I can’t say work?

Avila: Well I believe they blah blah blah things I don’t understand. 

TGS: Well no. That’s wrong. I guess you had a fifty fifty chance. Now check Miss Nigro’s visual fields please. 

Poor Aviva. She and me are on the same team. I smile at her. She says, “He’s funny that way.”

I say, ” Well that’s one way to put it.” She winks at me. The Great Scott laughs again. My visual fields seem just fine. 

I got to Quest to get my blood work in time to also get to Panera before 11am when they mysteriously take away the soufflés somewhere where you cannot buy them. I enjoyed the crap out of that soufflé. 

Oh. One more thing. “What can I do about this physical fatigue over the next several months while I’m waiting for the new goo?” I asked. 

“Lose weight. Exercise. That’s all you can do,” says TGS. 

I sigh. “Really? That’s what you have for me? Does it make sense to you that I am so fatigued that it wears me out walking from my parking garage to my office and you want me to exercise?”

“Well it’s your only option. It’s just the way it is,” he says to me. I see Aviva roll her eyes behind his back. 

“Well it’s stupid. I have to work. I have to maintain my home. I am single. I need my job. I can’t just ‘find time!’ Who do you think I am? Goddamn Montel Williams?! I actually have things I need to DO that suck up what little energy I do have. Things like showering. And laundry. Yeah. That’s just the way it is,” I say. 

“Ok then, it was great seeing you today Maribeth. See you again in August. Aviva, please bring my tools to exam room 14. Have a great day Maribeth. If you don’t hear from us to schedule you in the next three weeks, give us a call,” TGS says as he walks out the door. 

It’s gonna be a long few months. 

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