...so that’s what she became.
Like much of my time in the investigational study, the day of the endoscopy -- the last big hard part -- was not quite what I expected. My endoscopy was scheduled for 7:30 am at the University of Chicago (a solid hour from my house). Since I was to be there an hour before the procedure, my husband and I left our house around 5:15 am.
I was tired, but having done the whole endoscopy thing before, I thought I knew what to expect. I envisioned a softly sleepy day following the procedure -- the edges of my responsibilities slightly blurred, the urgency of my never-ending “to do” list fading while I rested, slept, and read (I had not one but two good books waiting for me). I figured it did not matter that I was tired, as I felt certain I would “catch up” on my sleep later in the day. Little did I know that I would lose giant chunks of the day at a time…
We arrived at the hospital with time to spare. I was escorted to the outpatient surgery preparation bays, where I was prepared for "the" procedure. The investigational study coordinator arrived just as they were inserting my IV and requested that they draw blood for the study concurrently. With my empty Ziplock baggies and prescription bottle in one hand and my stool sample and the six vials of my blood in her other hand, she nearly danced off -- thanking me profusely as she left.
In the holding bay, I talked to a very kind Indian Fellow (read: fellow/resident) with an awesome accent and a name I knew I would never be able to pronounce. He was clearly new to this particular rotation.
So, you are here for an Upper Endoscopy?
You think you have Celiac Disease?
I know I have Celiac Disease.
Ahhh. So you follow a gluten free diet.
I was following a gluten free diet until I started eating gluten six weeks ago.
Yes, for the investigational study.
Oh (with eyes slightly bugging out)…and so how do you now feel? Not so very good?
I haven’t felt great…
He grinned at me -- filling my silence with a very accurate summary of how I have been feeling.
As the nurse wheeled me toward the operating room at about 7:20 am (early!), she double-checked that I had seen the doctor, that I had had a chance to have all of my questions answered. I assured her that I was fine -- explaining that I had seen a male “resident” (my term). She was puzzled as to who that would have been until the Fellow walked into the operation room, at which point she connected the dots, saying, “Oh, here’s your mystery fellow!” We all giggled just a little…
The doctor running the investigational study breezed in a few minutes before 7:30 am, paused for a moment, looked hard at me…and said “You’re done! You gutted it out!” And then, holding my gaze, she very seriously thanked me. I sort of shrugged. While the investigational study has not been easy, I never really entertained the idea of an early termination (read: “quitting.”).
As the team made final preparations for procedure, the doctor reviewed the plan -- explaining that they would be taking a number of biopsies of my villi. Just as I was starting to feel the first effects of the anesthesia, I heard the doctor say something about additional biopsies. Someone in the room asked about it, and she said something about cold tongs, or something...and the last thing I remember hearing is her reassuring them that she would take those biopsies. I'm thankful I don't remember anything else, for I know enough about what happens to know that I could remember more.
The next thing I knew, it was 9:36 am. I had assorted random bits of information floating around in my head -- extra biopsies, cold tongs…some pieces of the conversation my husband had with the doctor about how everyone in the study had had some symptoms, about how they had selected candidates they thought would be able to tolerate consumption of gluten without the protection of the study drug…and this vague feeling that somehow I had lost time (previously I have been in recovery and awake and preparing to leave within an hour of the start of the upper endoscopy). Later, as I tried to piece together my experience and what I had heard with a friend, I had to smile when she said, “I always think it’s funny that the doctor talks to you when you’re wasted.” Yes. That.
…and then, before I was even fully awake, the nurse removed my IV and said we were free to leave. I can only surmise that she offered me a wheelchair because I was having a hard time staying awake, but since the offer of a wheelchair was unexpected, I declined it. I walked unsteadily toward the parking garage with my husband, who ultimately suggested I wait on a bench for him.
The next thing I knew, my husband was rousing me, encouraging me to get in the car…and then the next thing I knew, I was home…and fighting nausea and an excruciating headache that was obscured, thankfully, by giant chunks of time that…simply fell away.
It wasn’t until about 9:00 pm that evening that I was even able to articulate to myself that the day had not even remotely had the softly sleepy quality to it that I had anticipated, that I was indescribably more tired than I had been after what was essentially the same procedure only eight weeks earlier, that I was miserable...that something about this experience was different.
That was Thursday.
Maybe, a friend later suggested, it was so hard because your body was on edge already.
Friday was nearly equally as difficult…and somehow, I lost sight of the fact that the biggest hard part of the investigational study really was behind me. And then a dear friend stopped by with a gift -- a small tray that read “She needed a hero, so that’s what she became.” I loved the sentiment, but I wasn’t sure it fit me. Maybe that’s because a tiny voice inside my head has wondered, all these weeks, if -- just maybe, some part of it all was in my head.
As results -- first blood, then biopsy -- have started to trickle in, sliding silently into my e-mail under cover of night, I’m starting to think I just might have to endorse the idea that something heroic happened here.