Ma.. Ma… Ma… My Schwannoma! (Part 6 – On Realistic Expectations and Patience)

Posted: August 16, 2016 in My Schwannoma
Tags: , , ,

It’s been about 9 months since I last updated everyone on my brain tumor and, if you think I’m not telling you enough then, all I can say is “have patience“. Hard as that may be, that’s what I’m learning to do.

Since I last bored you with my progress I’ve had 2 MRIs. One was last February and the other was last week. Both were multi-planer multi-sequence imaging studies both with and without Gadavist contrast. In the 6 months between the 2 studies the tumor has not changed in size. My radiation doctor says this is a good thing (yay me!). For a film with extremely high production values and an amazing voiceover see below.

          <<<Check this out: My Schwannoma – The Movie>>>

I’m bummed despite the good news. See, for a small percentage of patients stereotactic radiosurgery on a trigeminal schwannoma will shrink the tumor a little bit. For most of us, simply stopping the growth is all we can expect. So, to the folks who don’t have my brain, this is great news because it’s as expected.

But, I’m not an average “as expected” kinda guy.

I set my personal objectives far above average and I expect any little motherfucker that wants to take up space and hang out in MY brain to do the same. Ya wanna be a piece o’ me ya gotta perform to my standards! My doc says that’s not the way things work. I say my tumor should hire my cousin Caitlin as a life coach!

(Actually… that makes no sense since I want the thing to die and dead tumors don’t need life coaches. – Yet another home run for cognitive dissonance. Damn).

That was where the bit about realistic expectations comes in. Here’s the part about patience.

My next MRI will not be for a YEAR. In that time, unless my symptoms change, I won’t see the doctor again. Schwann cells are not very radio-sensitive. So, even if the tumor does shrink somewhat, it will be over the course of a couple of years. When you have a numb eyeball, a couple years is a long fucking time. But, dead schwann cells are like a fine wine (strike that…. it’d be a mixed metaphor unless I find a way to tie life coaching and wine drinking together and I’m too lazy to do that right now even if it is pretty easy.) Anyway…

… But dead Schwann cells take a long time to result after radiation exposure. So, what I really should be doing is to be grateful that this thing grew slowly and happy that my doctor says the treatment is working as planned. But that’s hard.

What I think I learned today is that gratitude is easy to forget and patience is difficult to remember. But, both are keys to getting through any bout with adversity. So, over the course of the next year those are  the skills I need to cultivate.

See… the little bastard taught me something again 🙂

Cheers.

 

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Comments
  1. Joy Bryden says:

    Oh Steve. Your honesty and frustration hit home

  2. Susan says:

    Thank you for sharing your insights,pain and humor

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