Squeeze The Day

Hi everybody,

Just a little update: I’ve got an MRI tomorrow, and for some reason it’s the 1st one that I’m actually a little nervous about. This isn’t for any specific reason, so don’t worry any more than you may already have been worrying.

Ideally, don’t worry at all because there’s nothing me or you or Dutch can do about any of this, and today is a beautiful day and I’m happy to be here as long as I get to be here. And I swam in 2 oceans and 4 creeks and 2 lakes and 1 river in the last month (and at least 3 pools), and boy is this kale / green tea smoothie delicious.

Maybe it’s because I have now officially passed the median survival rate of 14 months that I’m worried. That in itself isn’t a reason to worry– in fact it means I am forever in the lucky 50% of GBM’ers who didn’t die within 14 months. Which is wonderful (honestly – I can’t stress that enough). But since the next looming statistic is “2/3 of you are dead within 5 years”, that means… well it means I’m lucky, but I’m living on borrowed time. And if I’m not, it’s still hard (impossible) not to feel like I am. Which actually isn’t always a bad thing.

I realize that all of that is a matter of perspective, and that I could “choose not to look at it that way” and that all of us “really only know that we have today!” But the reality for me, and it is my reality, is that every 2 months I get to visit The Parole Board of Being Alive, which tells me either (A) that I’m on the Express Train to Outtahere, or (B) that I get 2 months to
believe that’s not the case, at which point I have to come back in for another hearing. Repeat ad infinitum.

You begin to see brain cancer’s kind of a drag, even if everybody keeps saying “But you look great!”

The MRI is certainly the star of tomorrow’s show, but my doctor visit afterwards will also have some import. I’ll get the MRI results, of course, but we’ll also be discussing whether or not I’m going to continue on the Temodar® (Temozolomide) chemotherapy that I’ve been doing. This month is officially my 12th month of Temodar®, which according to the “standard treatment” plan could be the last one. Or it could continue for months, or years. I’m not really sure. I think it’s up to me. I think I get to decide whether to continue or not.

Feeling the way I feel (hazy / stupid / unable to remember things or focus for any useful period of time) I would love to get off this stuff. That said, it may be the very thing that is keeping my Brain Cancer™ at bay. Or maybe it’s not– maybe it hasn’t been doing anything this entire time. But maybe it has.

You begin to see why this is difficult decision to make.

Really all I care about is being able to enjoy the time that I’m here, while I am here. And to be useful. And kind. And to do something with myself. And the effects of this stuff are seriously hindering me being able to do any of that.

(Also, the occasional and terrifying “oh shit, I feel like I’m going to have a seizure I’d better go lay down on a couch even though we’re in the middle of dinner or walking down a street” gets a little old.)

But I keep trying, and sometimes it works: sometimes I find myself just enjoying. Or being useful, and kind.
I enjoyed all that swimming. I enjoy seeing all of you. I enjoy writing. I enjoy Dutch.

So MRI tomorrow afternoon. I will update everybody as soon as I know, probably sometime around 3 or 4pm.

Until then, “We only have today!”

Today, I did manage a swim. I saw at least one of you. I wrote this. And now I’m gonna go get Dutch some dog food. After that, I might watch a movie.

So I still have today (or at least the last 6 hours of today).

If I wasn’t so run down, I’d seize the hell out of it.

I’m gonna settle for a light squeeze.

6 thoughts on “Squeeze The Day

  1. Chad,
    Long time lurker; first time commenter here. Just had to uncloak to let you know a. How much I enjoy your writing b. how much I admire your fortitude and inscrutable sense of humor and c. How much vibing I’ll be doing for you as you head into your next MRI. Your candor is really refreshing in this little world of gbm!

  2. Hey, Chad-

    Today, along with your swim and your writing, you moved me- some person you’ve never met. You took me away from plugging forward with my head down and brought me back to thinking about all of the world’s citizen parts. I am so glad you’re still here, and still writing. I’m sorry you don’t feel better, but I’m glad beyond telling that your brain is in good enough shape that you know what you feel and can express it.

    I wish you wisdom and peace in figuring out the future of your relationship with Temodar and its brethren. Making decisions about drugs that are as vile as they are potentially life-saving with no real proof of efficacy is awful.

    I’m focusing hope and good thoughts that your MRI is easy, and you get your 2 month parole tomorrow.
    peace,
    Kathleen

  3. Best of luck with your MRI and thank you for reminding me to seize the day. In my own worries and concerns, I tend to forget to appreciate being alive.

    P.

  4. This was a heart-swelling admission for the affection of life itself. Thanks for elucidating it, your literary gift for gab remains as incisive as ever.

    Thinking about you on this ScanDay.*

    `Tom

    *Not to be confused with SconeDay, which is everyday for me.

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