It’s Not a Journey, but a Slog

The other day, I received my first disabled parking placard. Mr. Luna and I have joked for a few years now (gods, this segment of treatment has been happening for five years) that I should get one. You know, because of the closer parking spot. And now that I really REALLY need that closer spot, I get it. I mean, when I was hobbling around back in 2010, moving slow because of the first surgery and giant neck brace, I got it then too. In 2001, when I was sick and fatigued every day from radiation treatments for two months, well… I was living in San Francisco. Everyone wanted the closer spot. But, especially on days like today, when just standing up is tricky, when I’m leaning on the cane, even in the house, yeah… I get it. 

When I had my second spinal surgery in early 2012, my neuro surgeon gave me a warning. He said, “you need to be prepared to lose the use of your right hand.” He was talking about the time immediately following said surgery. That was over three years ago. I felt like I was in the clear! Like I’d gotten away with something. They’d sacrificed seven different nerves during that 11-hour surgery. And when I awoke, and he came to see me in the ICU, I proudly wiggled my fingers. They all worked, despite all that trauma.

This is why it feels so completely unfair that this is happening now, this gradual decline, this decay of what I had. I was getting stronger, working every day and feeling like I could beat this. Feeling like, all I have to do is get past this hurdle of the cancer, and then get on with my life and all the things I would dream about doing. Finish that novel, knit all those fabulous patterns, sew new curtains for the new house. But now there is this. What can I do with this? Is this what surviving cancer is? Instead of dying, you get to live out your life unable to do things like cut your own food? Dress yourself? Drive a car? All because they thought they’d calculated it right, based on what my Radiation history showed between what I’d received in California in 2001 and then in Texas in 2011. And I really don’t believe they got it right. And it’s damaged the cord.

Is it permanent? Will the swelling eventually get better? Nobody seems to have an answer. At this point we’re moving forward as though this is my life now and we have to teach me and my hands how to work with limitations, while trying to regain some strength and dexterity. I started occupational therapy again on Friday. My therapist said she was saddened to see my name on the roster, because it meant something was very wrong, that I was worsening instead of getting better. And she’s right, of course. We did the metrics again, the same ones we did at the start and finish of my previous sessions, and the numbers were completely disheartening. Even worse than when she’d discharged me in the summer. 

We also played a bit with then tenodesis splint that was made for me to rebuild lost muscle in my wrist and arm.  Then they also took some measurements to make splints for my MP joints, as we discovered I actually could straighten all of my fingers together if that joint was supported. (I note my physiatrist hasn’t even talked about this with me, but maybe that’s too down in the weeds for her. Her role really seem to be figuring out how to manage my pain and discomfort through medications.)

The Borg enhancements are coming along nicely

 
Pardon the Dell laptop; it’s for work. The Yeti mic is also for work, because I dislike headsets, but needed a good mic for the dictation software. Oh yes, and I do still work, full time. Just from 1200 miles away from the office. Thus far they’ve been tolerant, and seem to have written into the office SOP that I technically can’t be fired for my disability, despite the fact that they have fewer than 50 employees and thus the FMLA does not apply to them. So far we’ve found a sort of balance. And if I can ever get caught up on household paperwork, there’s a shit-ton of stuff we could be writing off from the taxes. Because I work in my home. Plus all the medical crap.

Anyway, All I’d really wanted to say is this cancer stuff… It’s not a journey. Not to me. A journey is something beautiful that takes you places you want to go, even if you hadn’t known as much. A journey is going to Thailand or Sri Lanka on a spiritual quest or something. Cancer is a bloody slog through scads of appointments you wait all day for just to speak with a specialist for 20 minutes. It’s yet another test or scan. It’s praying (whether you believe in prayer or not) that the scans come up with improvement, or at the least they’re “stable” which is doctor code for “if there’s any growth, it’s far too tiny to measure, so we’re calling it stable”. 

I refuse to call this a journey. So there.

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