Is the title worthy of copyright? These two words were my response to a statement from one of my 15-year old daughters this morning, Sam, who is home sick. I was plodding around the house this morning getting myself ready for work, trying to break out of a mental and physical funk. From the couch, in her inside-out PJs, with a roll of toilet paper beside her (sniff sniff, don’t we have tissues?), she says to me, “you’re going through some stuff, aren’t you?” “What? Yes, Sam, I am, thanks for noticing. Maybe a couple of aspirin and a good nights sleep will set me straight, and I’ll be alright by Sunday.”
She cracks me up.
I’m writing this from my desk in my office on the UGA campus. I had hoped to be in Nashville today having tests performed in preparation for treatment. Unfortunately, I’m still waiting on a group known as the IRB (sounds as vaguely malevolent as the IRS)
(oh, my other computer just lit up for some reason. It’s 9:26 now!)
All cancer research institutions have an “Institutional Review Board” that is “designated to protect the rights, safety and well-being of humans involved in a clinical trial by reviewing all aspects of the trial and approving its startup.” (I got that from a website)
Hey, IRB, I appreciate all that you do, really, but I have a tumor growing in me and it is MY CHOICE to assume the risk of taking experimental drugs as opposed to waiting for disease to ravage me.
Sorry if that last part reveals my burning frustration, but I’m told I have terribly few options right now because I don’t qualify for many other beneficial treatment options. I’m either disqualified from current studies because I’ve previously received immunotherapy or there aren’t slots available (the study is full). What this means is that I’m not a good guinea pig for the research or that my participation is not needed. So, even if beneficial drugs exist, perhaps resting, so very available, on a shelf in a refrigerator in an oncology clinic, and which might prolong my life, I have no access to them because I wouldn’t be a worthwhile expense for the drug companies.
C’mon. I understand the science, but the indifference conferred by subject anonymity comes off as cold ambivalence, since the subjects involved are humans and not model animals.
Can I get a white t-shirt with a big red dot in the middle? That’s me, the human data point, with very large error bars.
Oh, and the featured image is from a scene in the movie “The Music of Silence,” which I watched on the way home from Italy last month. That’s a young Andrea Bocelli pulling himself out of bed. Bocelli is an inspiring person, at least from what I learned in the movie, but this scene seemed to capture how I feel right now. Take it all in.
Still waiting. Love you all.
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We’re praying for you, BW. ❤️