Tuesday, November 8, 2016

Time Capsule (or Capsule of Montelukast)

It is 11:31 pm on Monday, September 12, 2016.  My twins will be 11 years and 11 months tomorrow.  And I will undergo a gluten challenge at the University of Chicago Medical Center -- the last step before I will be officially enrolled in the investigational study of the efficacy of Montelukast in patients with Celiac Disease who consume gluten.  

I have taken two doses of the "study drug," which came to me by overnight mail on Friday, September 9, 2016.  The study drug capsules are clown-like in appearance -- big, puffy, red.  When I shake them, I hear something rattling around inside...and I wonder -- a tablet?  A capsule?  Or...what?  I have taken both doses, and just tonight I realized that it never even occurred to me to break the capsule open to check out what was inside...of course, even if it had, perhaps I wouldn't have known what I was looking at.

But, as I swallowed that big, fat, puffy red capsule on Sunday morning (the first day I took the "study drug"), I was struck by how truly odd it was to take a "medication" without knowing what I was actually ingesting.  That is very unlike me.

Believing in the importance of respecting in as many ways and as fully as possible the double-blind nature of the investigational study, after I took my first dose of the study medicine, I went about my day as usual.  A few hours later, I went to the bathroom.  After I finished, I was struck by the highly unusual foam in my urine.  I had done such a good job not thinking about the study drug that I stared into the toilet for a minute wondering what was wrong with me.  And then I remembered.  Study Drug.  Relief washed over me, for I suddenly felt certain that the foam in my urine must surely mean I had received the Montelukast (the drug being studied) and not the placebo.

I felt momentarily guilty -- how wrong was it that I would receive the drug being studied when Susan had not?  

And then I felt relieved -- that kind of relief that washes over you, weakening you in it's wake.  My upcoming gluten challenge would be fine.  As the fact that I was likely to be accepted into the investigational study slowly sunk in, I had had some terrible visions of what the gluten challenge might be like -- of it NOT being fine that the relief was almost overwhelming.  

And then I felt the burden of the secret -- if the study was to remain intact, double-blind and all -- I had to protect the information I had accidentally gleaned.  I was soso tempted to Google side-effects of Montelukast, feeling certain that I would find "foam in urine" as one of them.  But I wasn't going to do that.  Not then, and not ever.

I took my second dose of the "study drug" this morning, just after getting all three of our children safely to school.  Knowing i would be at the University of Chicago Medical Center for a minimum of four hours during and after my gluten challenge tomorrow, I was determined to make the most of my work day.  Before even taking the study drug, I made a list of things I had to get done.  There was a lot of work on the list.  I felt the volume of work on the list offset the fact that I would not be working the following day.

About 45 minutes after I took the study drug, I was struck by an overwhelming fatigue.  Not thinking about the study drug, I tried all my usual tricks -- I moved from my home office to my sun-lit dining room.  I drank a caffeinated beverage, and then I ate chocolate (yes, before 9:00 am!).  And then, when I found myself falling asleep in front of my computer, I took a brisk walk (I've been counting steps anyhow).

Ten minutes after I got back from my walk, I could barely hold my head up, and realized I was not getting anything done.  I gave in to the nap that was calling out to me (while I would LOVE to nap regularly, it just isn't something I do...pretty much not ever).  Unable to summon the energy to climb the stairs to the bedroom, I laid down on the sofa in our living room.  I set an alarm on my phone for 20 minutes, thinking Power Nap.

Three hours later, I woke from a deep, sound sleep -- hot, sweaty and with the feeling that I had slept through the day.  And, I sort of had.  I couldn't believe my eyes when I realized it was nearly time to pick my oldest up from school.  Still groggy, I ran through the shower and out the door.  Later, as I waited for her to come out of school, I marveled at my fatigue...and then was struck by a thought -- what if my fatigue was a side-effect of the Montelukast?  (A part of me wondered if I should have researched the side-effects of Montelukast before beginning the investigational study, but at this point, that is no longer an option...)   

As guilty as it made me feel to think that I knew I had received the study drug -- the Montelukast -- (for I am not supposed to know that), my intense fatigue also made me feel like things would likely be fine during my gluten challenge the following day...

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