The One in Which I Explain About the Rabbit Hole

I read a blog post that really hit home for me yesterday. It's called Tied for the Worst Feelings Ever from the blog, The Liz Army. Liz is one of the bloggers that I've discovered online through twitter - (and I have a link to her blog on my website under "Other Brain Cancer Warrior Blogs" if you want to check them out at the bottom right of this page.)

Connecting with other people that are sharing my challenges and experiences is really important to my healing...and sanity, I guess! Sometimes I feel like I've slipped down a Rabbit Hole where nothing makes sense. Reading someone's thoughts and feelings and thinking, "Exactly!" makes me feel not so alone and crazy.

Well, yesterday, Liz's blog entry hit me square in the stomach ...and the heart. Because she said,

Tied for worst feelings ever:

• People assuming you beat cancer when you haven’t.
• Reminding people you still have cancer and making them cry.

Over the past week the following things made me feel real shitty.

<Thwunk> Exactly, Liz. I know exactly what you mean.

I recently had the wonderful experience of spending the holiday week with my family - all of my kids and  my mom, dad, sister, brother, his significant other, my niece and her family... It was a very special get-together that I will never forget. But included in that experience was a number of difficult, one-on-one conversations with members of my family in which I had to be brutally honest with them about my life and my future. Because I realized that they hadn't quite "got it"-  what it is like to have GBM and LIVE with cancer.

It seemed cruel and inappropriate to let them assume because I look healthy - albeit bald -  and I'd finished my (initial) treatments, that I was going to be "okay".  They needed to know that, down the Rabbit Hole, "okay" means something entirely different.

And then nearly every day, when I share my current experiences/treatment, I get responses like, "You are 'doing it"!" and "Keep it up!"  --- meaning I am "beating cancer".  And their hearts are in the right place - they want to be encouraging and supportive.  So, I end up feeling "really shitty", as Liz put it.

Because I have to be the black cloud that says, No, I'm not "beating cancer".  Because don't forget, we've slipped down the Rabbit Hole where nothing makes sense in the normal context:
You have a disease. You seek the very best doctors and the very best treatment. Ipso Facto: You're cured, and you go on your merry way...

And yet...this disease doesn't go away. Living with glioblastoma multiforme (GBM) means just exactly that. LIVING with it. In my body. In my brain. Indefinitely.

I didn't invite it to the party, but it came just the same. And it will. not. leave. 

It's the strangest damn party that I've ever been to - and if you come along, too, you need to know the straight-skinny about this uninvited guest. Because it's here to stay. The best that we can hope for right now is that it behaves itself and doesn't make a scene.

Earlier in my diagnosis, I wrote about how I might be living with cancer after my initial treatments, meaning that there was a chance that it would all be gone. But that was about me, wanting to put that positive energy out there.  Not wanting to focus on the negative. Can I envision a time that GBM will actually be eradicated from my brain? Yes. I can.  Maybe miracles do happen? Maybe they will discover/develop a cure in my lifetime? It could happen. And I believe there is merit in that mindset - focusing on the positivity and sending that out into the universe. 

But it's also important that people realize the HERE and NOW of our situation.What it's like to slip down the Rabbit Hole...


This is how Liz put it:
...saying I “beat cancer” diminishes all of the crazy I deal with every single day. From planning for retirement, to advance directives, to adventurous vacations, to home buying, Brett and I weigh every decision in the light of me being a person living with brain cancer. Our future is murky and uncertain when it comes to all things Liz.

And this is why Liz's words hit home so much for me. Likewise, Steven and I (my whole family) are dealing with big decisions that come with the WHAT IF's of my disease: How do we try to stay in the present and "suck the marrow out of the life" while still being responsible about our uncertain future? We need to make plans, but let's just say that we're not buying any non-refundable tickets. That can mess with your head.

In a nutshell, how does one actually LIVE with brain cancer?  I think that is our most daunting challenge here.

I'm just thinking aloud here... but maybe "beating cancer" isn't the same thing as eradicating cancer or killing it? Maybe deep down in this Rabbit Hole, "beating cancer" is learning to live with it at your party (LIFE) and having a fuckin' rad time anyway?

Cancer is one unruly, batshit crazy guest, no doubt about it. It's like your wacky, alcoholic relative who comes for dinner, gets wasted, and ends up spewing political rhetoric, and spilling wine all over the table...
 <eh hem>
I'm imagining...hypothetically. Because of course, I have no one in my life like that...

But it is OUR party, and cancer is just the uninvited guest. No doubt, it has an influence on how things go, but one thing it can't do is decide how you react to it. For me, the first step was to stop pretending that it was just going to leave. So, now what? We're still figuring that out.

Yep. Teachers have to dress up for Halloween, too! (2011) Guess who's the crazy Queen of Hearts??

But it's really important that anyone else that comes to our party understands that Cancer is going to be there.

So, might I suggest this little ice breaker:
Welcome! That's Cancer over there. She's living with us. Just so you know, she's one crazy-ass bitch, but we're getting used to her. The party's over this way....