Tuesday, August 10, 2010

The Social Graces

I am not exactly the Duchess of Windsor, but I was raised to be polite. I was taught how to act in polite society.

When people say "How are you?" I reply "Well...and yourself?" It's an automatic thing. I know that rarely in casual conversation do other people actually want to know that something is wrong. They don't want to hear about your troubles.

Well sometimes it's just silly.

For example, yesterday. I was sitting on the exam table waiting for Dr. Miller to come in. I had just detailed my problems to Kate the nurse practitioner.

"How are you?"

"Well, and yourself?"

He laughs and says he's heard that I am not so well and I say "Well, this is how I was raised." Then we go on to our discussion. Once he penetrates my profound shock with his insistence that I must begin chemo in an hour, I began to cry and I could not stop. There was a constant stream of tears rolling down my face. We were having this whole conversation about the medications and dosages and schedules....and I am quietly crying.

I told them I had to go feed my parking meter. I thought this was a quick in-and-out appointment. they scheduled my X-rays and infusion time. I left to get quarters. I stood by me car crying, keys in hand, wiping my face with a paper towel and I thought "I can just get behind the wheel and go."

I don't even know where I got the strength to go back inside.

You see, I don't believe this will work. I think I am about to torture myself for about a year. I think we will do this for several months. It will damage me. They will realize that it doesn't work and then it will be months before I recover.

I am not being dramatic. I am being practical. I am IgA and that type is know to be drug resistant. They gave me Revlimid and low dose dex. That it the best they have to offer these days and it works for over 80% of patients. It didn't work for me. So they are adding Velcade which works in less than 50% of patients who are refractory - meaning drug resistant. I am refractory because I have had one prior therapy that failed.

I can not help but feel shitty because the same two drugs, RCheck Spellingevlimid and dex will be used again with the Velcade. Plus, Velcade is more harsh than Revlimid to begin with.

So why am I doing it? Because I can not face my parents if I don't. I can not tell them no.

I reached this conclusion a while ago. That I would face the equivalent of a year in prison. If I am lucky I will come out of it on the other end as I am now. If not, then some of the side effects will be permanent.

So I toook a swig of water, then poured some on the papertowel and wiped my face. I fixed my lipstick and brushed my hair......but never stopped crying.

I went up to X-ray. Every person, reception, escort and X-Ray tech, asked how I was....and I said "I am well and yourself?"

I went to the infusion room. Again they all asked and got the same answer.

I've got to come up with something else.


Warrant Diver said...


the best response I know of is from a friend of mine who regardless of how he really is, always responds "Shitty, thanks for asking" with a smile.
Look...stop being so damned logical. I'm a very nuts-and-bolts by the book black and white kind of guy, and even I realize that not everything works that way. There are exceptions. Things don't always happen the way they are supposed to. Doctors are routinely wrong and medical prognosis's (prognosi?) end up being 180 out from what really happens. People go into remission when they aren't supposed to, and people walk and talk again when they are never supposed to. I'm not saying keep your chin up...cry when you have to and when you feel like it. But keep your HEART up. Never, never, never, never give up.

Eagle1 said...

"Not bad for a person of my age and disposition" might cover it.

Peace and love.

BostonMaggie said...

Thanks! I appreciate you both

Kanani said...

I think a lot of people go through the rounds of chemo not for themselves, but for those around them. And sometimes, things work out, the other times --well, the exact fears your wrote about so eloquently.

But... after years of working with many patients in our practice, (Many of whom I still remember), one thing counts more than anything else. And that is ...how you live your life right now.
And I think you're doing swell, sister. XO -K

dianne.west said...

A very poignant post, Maggie. My hubby always made the same comment when any of his docs asked how he was. I, of course, always jumped in to recite all of the issues that he was really dealing with.

That memory made me smile - thanks. I lost him on 9/22/10.