A new chapter - a post by Shawn

A few weeks ago, I met with an oncologist at University of Chicago’s Duchossois Center of Advanced Medicine, which is the home to one of the best oncology centers in the nation. After a brief discussion and a review of my records, this doctor seemed pretty confident in the diagnosis of carcinoid syndrome but to be sure, he wanted to try me on the common treatment and re-run some of the common hormone markers for carcinoids.

Then last Tuesday, July 28th, I sat in his office to experience a first for this horrifying diagnostic experience. First off, my chromagranin A, the blood hormone marker typically elevated in carcinoid patients, was 390 with normal being anything less than 225. In addition, my CT scan of the pelvis and chest showed several abnormalities including two spots on the pelvic bone suspicious for metastatic activity as well as some enlarged lymph nodes in the chest.

“Well Mr. Gilley,” my doctor started. “With these CT findings combined with the abnormal blood work and reaction to the treatment, let’s just call this what it is. It’s carcinoid cancer.”

So here’s where we are. I’m going in every three weeks for the chemotherapy treatment of carcinoid syndrome called sandostatin. To put it simply, it’s a mean son-of-a-bitch of a medicine causing awful stomach cramps, long periods of nausea, and more than anything else, feeling pretty run down.

I will go see the oncologist on a regular basis just like old friends and I’ll also have the pleasure of being on first name basis with all the lovely personnel and in the lab and in radiology.

So here’s the part that I’ve had trouble writing. You see, I can spout out the facts with ease but the tricky part for me is verbalizing my reaction to all of this. Because while I’ve certainly known there’s something wrong for the better part of the last four years, I haven’t had anyone willing to definitively classify it.

I’ve watched the unique ways everyone around me has responded. Some simply want to say it’s great news. While I am absolutely relieved that the searching game we’ve been playing is over, I think I may have a different understanding of great news. You see, getting a dream job, that’s great news. Getting married; that’s splendid. Just bought a new car, well kudos to you. Diagnosed with a remarkably uncommon and infrequently studied cancer, not exactly news worth popping the champagne for.

And yet, there’s the other people who stand there, shuffle their feet awkwardly, fix their gaze on the floor tiles and mutter something about being optimistic that treatment will help and that they’re sorry I’m going through this. Certainly an understandable reaction and in no way am I trying to pass judgment on those who have reacted this way.

Truth be told, I don’t begrudge any of these reactions because really, what the hell do you say to this? We’ve traded the bad news of “I don’t know what’s wrong” for some different bad news.

Here’s my reaction and it’s not simple. Am I relieved? I’m relieved that I know what I’m fighting against. I know what I can do to help myself stay strong and as healthy as possible and I know what the plan is to continuously treat it. And yet, I’m not really happy either.

I’m mad as hell that while my friends are joyously posting pictures and statuses about their first jobs on facebook, I’m being driven to treatments and spending uncanny amounts of time sipping ginger ale and praying to not have to run back to the bathroom. Even more, I’m sitting in my bed with one hand on my stomach thinking about the fact that while we may have a current plan for treatment, there is no plan for ending treatment.

As in, this is it folks. My dreams of being a teacher and working passionately and intensely in a high school classroom, a la Robin Williams in “Dead Poet’s Society”, has shattered like a glass frame holding that aspiration on my mantle.

So my reaction is that after four years of my life revolving around the search for this diagnostic unicorn, I’m trying to figure out what my life is with this less than positive reality permanently affixed to it. I’m putting away old dreams and trying to forge new ones. I’m accepting the pieces of my life that are out of my hands and taking this one-day at a time.

I’m fixating on the truth that I’m extremely lucky to have a girl that has not only stuck by me these past years, but has made even the most miserable times tolerable with her unwavering love and support. More over, I’m appreciating the fact that this illness has made me smart enough to appreciate her and make sure I never take her for granted for even a fraction of a second.

I’m lucky to have parents that sit hours on end in every waiting room of every doctor’s office and testing facility and have been there to support me every step of the way. They’ve been through their own version of hell these past few years that I can’t fathom and I admire them for continuing to wake up each day and simply get out of bed.

Quite honestly, both my family and myself simply need to time to cope and adjust. So be patient and understand that while it’s good news that we know what we’re doing, the hope we’ve been clinging to these past years that maybe this is a simple and curable thing has been taken away. Now we’re left standing here piecing together the silver linings with the unsavory realities.