Friday, September 18, 2009

To know, or not to know

A few days ago I got to the end of a bottle of study medication. I laughed because once again, there were only two pills in the bottom of the bottle.

The bottles are counted out carefully, 180 capsules in each one – so by the time you taken all nine capsules for the day for several weeks, you should have an empty bottle. But I always have these two straggler capsules and have to get the third out of the next bottle, thereby making that bottle also off by one.

When I had only been on the study a few weeks, I dropped one of the white capsules on my white kitchen floor. (It was definitely a low vision moment!) I remember this being such a crisis at the time. I looked for hours for that stupid capsule. I even tried to move the stove and fridge – but I never found it. I’m guessing there’s a petrified capsule down in the air duct maybe?

I was so worried about it because if I didn’t find it, I was worried one of my God kids visiting would – or perhaps a visiting guide dog. Poison control would have to be called and the NIH would have to break the blind, ending my study participation – not to mention hurting someone dear to me.

I looked again and again for the missing capsule for weeks before I let any kids or dogs anywhere near my kitchen – I had to be sure it was NOWHERE to be found.

Every since then my pill count at the end of a bottle has been one off.

Now the whole thing seems a bit silly. Taking those nine pills just seems so routine now.


On almost every trip back to the NIH Dr. Gahl, if he saw me, would ask me if I thought I was on active drug. I dreaded the question. I did think I was on active drug, but I didn’t want to say it out loud. What if it was all in my head? What if I was a bad candidate for the trial and somehow just the thought that I was getting something was improving my PFTs? What if all that acid reflux was also in my head?

Over the course of my medical past, I’ve been accused of being a “drama queen.” It was true when I was a kid, I must confess. Now, however, with multiple surgeries and procedures under my belt, you’d think some closest to me would give me a little credit. It’s partly for this reason that I was, and am, a bit afraid of finding out I’ve been taking sugar pills all this time. I’m afraid some will use it against me.
While it’s great to be doing as well as I am – and I would never complain – it only feeds the denial of those close to me to choose to cope by way of denial.

Now, however, I get to decide. Do I want to know?

Hey, I’m so curious by nature, truth be told I can’t help but want to know. At the same time, I’m really nervous about the idea.

I’m nervous of finding out I’m a sucker for the power of suggestion.

Now, however, I have a new worry that I never imagined during all those squeamish talks with Dr. Gahl. Now, in a strange way, I’d almost be relieved to find out I was on placebo. If I was, then my better-than-expected status was a result of the doings of my own body, unaided by pharmacology. That would be somewhat reassuring. It would confirm I’m really, really, stable – and that when they tell me to stop taking these nine white capsules a day, it really wouldn’t make any difference. I never was “really” taking anything anyway.

2 comments:

Kathryn said...

I want to know!

Jennifer said...

Your last paragraph was along the lines of what I was thinking when I started reading this entry - wouldn't it be a relief to know that you are really healthy and your lungs are a-okay? :)
I can understand the questioning though. In the end, I think my insatiable curiosity would totally win - it would eat me up to not know! ;)

Jen