21 March 2014

I get it now

I finally understand.
The Caregiver and I helped start a camp for grieving children, Mikey's Camp (named after a dog, not one of my Mikes). We believe it so crucial for kids who have experienced the death of a loved one. Every camp, we hear, "this is the first time I've been around other kids who actually get it." It's usually the first time kids meet other kids who have lived through the death of a parent or sibling.
A whole new world has opened up for them. A world where they don't hear,
"Yeah, I know how you feel, my dog died and I've been really sad."
Instead, they hear,
"My dad was sick and dying for weeks."
"My mom won't stop crying. Or get out of bed. Or stop wearing pajamas."
"I hate sleeping in the room with my dead brother's things."
Well, I get it now.
Novartis, the drug company that researches and makes my Super Dangerous but Absolutely Necessary chemotherapy pills, flew a group of CML (chronic myelogenous leukemia) survivors and their own caregivers to a two-day summit in New Jersey last weekend. I will update the details of the summit in a later post. But, it was a great experience.
The weekend began with a yummy lunch at a fancy hotel. The Caregiver and I were the first ones of the CMLers to arrive. Then, others started coming in and it began.
"Hey, I'm Patti."
Some of the CMLers and caregivers. New Jersey, March 2014.

"Hey, I'm F. This is R. You a 'blood sister'?"

I smiled.
And the room filled up. It filled up and I look around and realized they all have cancer, pumping through their veins. Just. Like. Me.
After introductions and we figured out who were the CMLers and who were the caregivers, the conversation quickly switched to finding out which drug everyone is taking and the side effects they are dealing with.
Wow. This was awesome.
Don't get me wrong. It's not awesome that all these other people - some as young as 30, some who still want to get pregnant and start a family, some who are years into their diagnosis - all have cancer. No. That's not awesome at all. That sucks.
What was awesome was that they all get it. They understood how I felt. They've been there. And there was a whole room full of people. Just. Like. Me.
That was awesome.
So, yes, I get it now. When the kids head to Mikey's Camp and meet other grief survivors and are so excited to meet the kids who are just like them, I thought I understood. My father died when I was 9. There were no grief camps in the 1970s. All my friends still had both their parents. But I know what it's like to be 9 and have your daddy die. Then when my First Mike died, I thought that I could, that I did, understand how our kids were feeling. And maybe, hopefully, I did OK. But that's not the same.
It's not the same as walking into a room and seeing it fill up with people who truly get it. People with hopes, dreams, kids, caregivers, pains, struggles. Just. Like. Me. That is amazing.

04 March 2014

Fear and loathing from the back side of 40

Birthday flowers.
Today is my birthday. 
I say that not because I want songs, or presents or recognition (although I did get all these things today) but because there was a time I wasn't sure I'd actually be here for today.
I have been trying to discover my New Normal while living with a cancer diagnosis since October. 
I remember the doctor's declaration distinctly. 
"You have leukemia."
Wait, what? 
That's cancer, right, of the blood? You can't be serious. Cancer killed my first husband and now you're telling me I have it, too? How am I ever going to tell my kids?
What went through my mind?
Fear. Fear of the unknown future. Fear that there won't BE a future.
My brain immediately starts spinning and spouting off worst-case scenarios.
I'm going to die (not anytime soon).
My hair will fall out (eh, it changed, got thinner).
I'll need a bone marrow transplant (nope, only if the Super Dangerous but Absolutely Necessary chemotherapy pills stop working).
They'll admit me to the hospital (nope).
I'm going to die (not anytime soon).

Thanksgiving came. I watched from the couch, huddled in blankets, suffering from the effects of the Super Dangerous but Absolutely Necessary chemotherapy pills as my children prepared all our traditional dishes. My mind slipping into thoughts of "What if this is my last Thanksgiving?"
Which quickly became "What if this is my last Christmas?"
And then "What if this is the last ..."
Looking back now I realize it was fear driving the bus. And here's what I figured out: If I let fear drive me around I will end up frozen. So frozen, in fact, that I'll be unable to experience what's happening right in front of me. I'll miss it. All of it. 
The thing is, if I focus on the "what if ..." I realized I will miss out on the Right Now.
So, with a little help from Isiah 41:10, I told fear to get on the bus and go. 

"Do not fear, for I am with you; do not be dismayed, for I am your God. 
I will strengthen you and help you; I will uphold you with my righteous right hand."

My New Normal is going to take some getting used to. But I do know that I want to be a participant in this New Normal and not a spectator. Today I got to experience my first birthday since my diagnosis and it's been my best birthday yet.  It's been complete with flowers, friends, singing phone calls, a massage, baked goodies, chocolates, laughter, and the love of my amazing family. It won't be my last.