We walked into the elevator and I walked into his arms. It didn’t take long to go down two floors, and then we were outside. This is not how I wanted it to be, I said. Adding that while I knew that was useless negativity, sometimes that’s just how it was.
Erik paused and put on a smile. “Oh, not me! This is exactly how I wanted it!” We laughed and put it from us. For awhile at least.
I’ve always just wanted to be somebody’s wonderful.
** Imaginary Friend, bumping into my Imaginary Significant Other, “Hey, how are you?” he asks. “How’s Jane?” Imaginary Significant Other smiles and says, “Oh, she’s wonderful.” **
The monthly eye appointment on Friday was a conglomeration of good — The front of my eye is “deep and clear.” No inflammation, no new debris. — and bad. The inflammation and fluid are back in my retina. Not as bad as when it began this past summer, but worse than last month.
Late December’s visit had been so positive. Fluid and inflammation were down, progress had been made. The inexorable creep of damage had been halted. Hell, if I’d been a student again, Dr. Choi said I’d be “summa cum laude!”
Friday, February 2, though, was different.
There’s a look that doctors have when they talk about this condition and the difficulty in treating it. It’s kind of anxious, concerned, and sad – all put together. That afternoon, Drs. Lin and Choi had that look. Our kind doctor-friend from our Alaska summer had that look this past weekend when she asked how I was doing. She hugged us. She knows.
It’s not wonderful.
On Friday we did not discuss progress, we discussed options. What to do with a condition turned “unstable” again. Another injection into my eye? Maybe an additional medication (an injection) that often requires extra paperwork for the insurance company? Perhaps a different eye drop? What about a clinical trial on a new drug seeking approval for use on conditions like mine?
We batted around pros and cons like little shuttlecocks. What if I were accepted into the trial but ended up with the placebo? What if the medication didn’t work? It’s a pill, what if the side effects were horrible (my body has a history of this one)? Was this just delaying stronger meds for a month while we waited to see if there would be improvement or new damage?
We finally decided to see if I would be accepted into the trial, if the timelines were appropriate, if I improved. And if I didn’t, we set up a fall-back plan of additional medications.
Since it was past 5:00 pm on a Friday when all was said and done, Dr. Lin said she would contact the study coordinator and initiate the screening process.
Monday came and went. I called Dr. Lin’s office and she called me back Tuesday afternoon. I had not been accepted into the trial. For one, I only have one eye and for some reason they want people with two. (Laura said this was eye-ism and I should protest). For two, I would have to go on a course of high doses (starting at 60mg) of prednisone. Given the damaging side effects of the last time I was on high doses of prednisone, Dr. Lin said she would not do that to me. I agreed that I would not do that to me, either.
So, just like that, we are on the “back-up” plan. I will have a steroid shot in my eye on my next visit (now just two weeks away) and I will start biweekly injections of Humira when it’s approved by insurance. But first, I will have a brain MRI with contrast because there is a link between Humira and multiple sclerosis (MS). Apparently, this little wonder drug can initiate, reveal, or cause a worsening in MS.
SO not wonderful.
We’re agreed that I do not have MS, but in the odds game I’ve been running lately, I would not take a bet on anything. Kind of like how I’ve been to over 30 years of high school and college sporting events, bought 50/50 tickets at every single game, and won exactly zero times.
But you know what? I am strong. Not strong like Bret Parker who has Parkinson’s and just participated in the World Marathon Challenge – seven marathons, seven continents, seven days. I am not that kind of strong.
I am dancing strong. Between the time that Dr. Choi left the room, and Dr. Lin entered, even knowing that there would be a confirmation of bad news and big decisions to make, Erik and I danced to Frank Sinatra’s I Won’t Dance.
The song came from my head (or my heart). I found it on YouTube, and danced. One of the many songs I love, it bubbles with innuendos.
“When you dance, you’re charming and you’re gentle, ‘Specially when you do the Continental. But this feeling isn’t purely mental, For heaven rest us, I am not asbestos.”
… “I know that music leads the way to romance, So if I hold you in my arms, I won’t dance.”
That was wonderful.
If I am going to go blind, and that possibility is still real, I am going down fighting, and laughing, and dancing. I am strong. I will continue to be strong. I will love. I will whine, I will pick myself up (with help), and I will keep going. There is still more to do.