Although my week so far has nothing to do with the 1960’s science fantasy novel about time travel, I do feel as though I’m having my own version of a wrinkle in time as circumstances are forcing me to move at a snail’s pace physically and at warp speed emotionally. I’m ending the week physically exhausted and emotionally manic…”wrinkled” feels like the perfect adjective.
It all started with a little tumble on Tuesday night that turned into a pretty debilitating injury. My weakened left leg caused me to fall while stepping up one little step into my bedroom and I ended up badly spraining my good ankle. It could have been worse, for sure, and I’m so grateful I didn’t break anything but the injury has severely impacted my mobility and I’m walking with the extra support of a walker. I expect to recover fully from the sprain and hope the use of the walker is only temporary but the reality of the situation is that this fall was a result of my disease and the process is only going to continue so I think it’s safe to say this won’t be my last fall and/or injury and that’s a tough pill to swallow. One crazy thing about ALS is because there is no pain associated with the disease, there are also very few markers with which to measure the weakness in my body beyond trial and error…there’s no barometer to indicate change. (I kind of feel like the frog in the pot of water unaware it’s beginning to boil.) The weakness in my extremities is really only measured when they fail me…usually with no warning and in a split second. This can be both terrifying and humbling.
Then, yesterday I got a couple of calls out of sequence in the late afternoon that are ultimately good, I think, but were initially confusing and abrupt and resulted in me being told my picc line is getting placed AND my first infusion of Radicava is happening TODAY!!! Yikes!!! This is definitely a lesson in perspective because on one hand, I could look at this sudden turn of events as a miracle and rejoice in the fact that I don’t have to wait any longer to begin this medication treatment. On the other hand, it’s a life-altering process that, once started, will continue for my lifetime and that feels daunting to me. It’s all so clinical and routine for those coordinating the treatment and care…it’s all so new and consuming for me. I need time to process, to adjust, to breathe and I’m not being given that space. I guess I need it to happen supernaturally…on God’s perspective of time because it isn’t happening in “real” time. I don’t mean to make it a bigger deal than it is but from an emotional standpoint, I feel like the “sudden turn” experiences of this week are pretty consistent with how life has unfolded for us in recent months…losing Rudy so abruptly without warning, my diagnosis so quickly afterwards, the progression of my symptoms, etc, etc…It’s all coming at us so quickly and the gut punches are feeling relentless today. I want a break. I want to be able to stop for a minute and not have something new to process or adjust to…I want to take long, deep breaths…I want time.
I’m also keenly aware of the fact that this is all happening at a time that is typically difficult for me anyway…the month of January has always been hard for me at varying degrees over the years due to post-holiday blues and, when Rudy was alive, the start of “out-of-pocket” maximums again (random, I know, but true). If ever there’d be a time I’d sink into depression over all that’s been going on, it would be now.
So, if you would be so kind to continue to pray, my requests for today include but are not limited to (insert smiley face):
- A healthy, balanced, motivating perspective on life right now.
- Quick recovery and renewed strength in my right ankle.
- Protection against depression.
- Supernatural ability to adjust to all the sudden changes gracefully with a light-heartedness.
- Strength of spirit for all the Geylings.
- All around good experience with Radicava.
- Lots of reasons to smile.
If all goes as planned, my temporary PICC line will be inserted today at 1pm and my first hour-long infusion will take place at 4pm. I will receive Radicava everyday for 14 days. My first 3-4 infusions will happen at the hospital and if I tolerate it well, Rolf and I will be trained to do it at home sometime next week. After my first 14 days of treatment, I’ll get 2 weeks off. At some point I’ll get a permanent port placed and every month after that, I will get 10 infusions within a two week period (i.e. infusions M-F for two weeks) and two weeks off for the rest of my life. Radicava is thought to slow the progression of ALS symptoms (not reverse them) so the hope is this infusion treatment will help to stabilize my situation. The effectiveness of the drug, of course, is kind of vague because I won’t know what I’d be like if I weren’t on the drug. It’s not like I’ll have a shrinking tumor to demonstrate that the treatment is working so I think my approach going into this is to assume it IS working and not wonder if it is, if that makes any sense. A good bit of this will be a mind game.
I’m sure this will all become second nature to us and we’ll figure out how to incorporate it into our daily routine of life but today it feels big and invasive and like something that’s being done to me rather than something I’m choosing to do for my own good. The number of paradigm shifts that are necessary right now is growing and, I guess, it would be nice to feel (and look) a little less wrinkled. 😉
THANK YOU FOR YOUR PRAYER SUPPORT! You have no idea how comforting your prayers are to our family. Love, love, love to you and yours!