I haven’t been writing about the blow-by-blows of my study experience and, in that regard, I have been remiss. Especially in light of the whopping news that I am out – that’s right, kicked out; officially extricated from the Merrimack trial because my eyes, it seems, have not been behaving. Guess I’m a nonconformist, right down to my retinas.
On the day before Thanksgiving, yes the busiest travel day of the year, I drove to MERSI in Cambridge for my monthly check-up. Two weeks prior, I had been weaned down to one 500 mg tablet of cellcept per day and shortly after that the symptoms flared. Going into this latest visit, I knew there was trouble brewing.
Long story short, Doc Foster declared I had relapsed and that emergency treatment was required. So, at 4 p.m. on Wednesday, still five hours from home, I sat on the 8th floor of 5 Cambridge Center and tolerated an I.V. treatment of solumedrol, a.k.a. high-test steroids, that nearly made me sick. The reasoning behind the treatment was, essentially, to kick the inflammation in the pants and give me some wiggle room until the next line of treatment was figured out. Still, it caught me completely off guard and I remember feeling a wave of panic come over me. But, thanks to my new friend Tammy from Maine, who happened to be seated in the chair next to me undergoing the exact same treatment for the exact same condition (must I interject the irony here that birdshot is rare and that this circumstance equally so?), I had a chance to release a little stress and emotion and get my head straight. (Thanks, Tammy!)
The plan for the next treatment is Zenapax ala I.V. infusion administered every few weeks until remission. That’s the goal. In this regard, I have yet to communicate with the insurance company and I hope that it will all work out according to plan. Cross fingers.
Intellectually, I understand that this is the next course of action and I’ll pursue it. Emotionally, well, that’s a different story. I’m nervous, of course, about this new drug and scared about what it will do for my vision and to my body. And then there’s the concern about the financial impact on my family, should that arise.
But, in the end, I have to make the best of this new section of the journey, just like all of the tricky steps that came prior because I refuse to dwell on things I cannot change. It is what it is what it is and the best way out is through (thank you, Robert Frost).
And even though I’m out of the study, I’ve decided to keep this blog going. It’s become a helpful place to vent and to steer people who have questions about the birdshot and I’m grateful for the platform.
I’ll check in soon, you lucky kids. In the meantime, peace.