“It’s not simple to say
That most days I don’t recognize me
That these shoes and this apron
That place and its patrons
Have taken more than I gave them
It’s not easy to know
I’m not anything like I used be, although it’s true
I was never attention’s sweet center
I still remember that girl
She’s imperfect, but she tries
She is good, but she lies
She is hard on herself
She is broken and won’t ask for help
She is messy, but she’s kind
She is lonely most of the time
She is all of this mixed up and baked in a beautiful pie
She is gone, but she used to be mine
It’s not what I asked for
Sometimes life just slips in through a back door
And carves out a person and makes you believe it’s all true
And now I’ve got you
And you’re not what I asked for
If I’m honest, I know I would give it all back
For a chance to start over and rewrite an ending or two
For the girl that I knew
Who’ll be reckless, just enough
Who’ll get hurt, but who learns how to toughen up
When she’s bruised and gets used by a man who can’t love
And then she’ll get stuck
And be scared of the life that’s inside her
Growing stronger each day ’til it finally reminds her
To fight just a little, to bring back the fire in her eyes
That’s been gone, but used to be mine
She is messy, but she’s kind
She is lonely most of the time
She is all of this mixed up and baked in a beautiful pie
She is gone, but she used to be mine“
I’ve loved this song from the moment I heard it. It resonated quite strongly. I had no idea what the premise of the musical was, and I didn’t identify with the concept of unrequited love and betrayal. My Rock is just that, my rock. He’s loved me through every step of my journey. I’d be lost without him.
So, why did this song resonate? I heard it when I was struggling with all of the changes that have occurred since I was diagnosed back in 2004. Most days I don’t recognize me.
The past several months I’ve been asked to describe what it’s like to live with “leftover symptoms” from the drug trial. I thought about documenting a typical day or listing the symptoms or number of doctor visits in a month but these ideas became overwhelming for me. I live it so it’s easier to break things down into small bite-sized pieces. Looking at a list was just… too much.
Then there’s the guilt (I’m not saying there should be guilt, but I certainly struggle with it) of not being the model poster child for those who struggle but bravely forge ahead, all while helping those around me… It took me years to figure out this was what I was doing. I’m still a work in progress on this topic.
“She Used to be Mine” – for me – is about the me before vs. the me after cancer. Physically I am so different but inside I still feel like the old me, just a bit wiser and, I hope, more empathetic. The drug trial helped save my life and I am thankful that it was available. If I had to do it all over again, I would. I wouldn’t choose it, but I would live it again to “fight just a little” for my family and those who would be diagnosed after me.
I was only 36 when I was diagnosed. Active. Highly involved in life. I still remember that girl.
It’s been an amazing 15 years since then (not bad for a 3 day death sentence) and I’ve had more chemo, tests and arsenic than a gal should have. All of the others in my group in the trial died, most from heart attack/cardiac arrest (arsenic is bad for you). I’ve gone into cardiac arrest 5 times since 2004, the last time happening in 2015 and that one was a whopper. (Right, Brenda?) The EMS crew, the ER doc’s, the cardiac ICU docs and all of my medical team still don’t know how I survived that one.
Six years ago I started having tremendous pain in both legs. A year (and many scans later) they found micro-fractures in both legs, tibia and femur. That brought another drug trial of which there were 3 of us involved. Six months in and my teeth started falling out. Many more tests later and they found that my bone marrow wasn’t producing correctly so the drug was robbing calcium from my teeth. So, no more drug trial. Those fractures are still there. I feel them every step I take.
Honestly, I have a host of other “leftovers” from that drug trial. New ones pop up all too frequently. That’s the new me.
The new me misses being able to kneel and get toys from under the couch for my doggos, or cleaning the baseboards… I also miss taffy, caramel apples and hard candy. I miss bike riding, ice skating and running. I miss hearing and seeing better. BUT I have life. Life with my family and my tribe. So, the times I look at the things I can no longer do I try to stop and think about what I’ve gained instead. Fifteen years. That’s not a bad trade off.
The days I don’t recognize me I try to find the fire and keep on living. I’ve learned to count the cost of the things that I spend my time – the things I choose to spend my time on. That girl that used to be mine, she’s still here. I just have to adjust my focus from time to time. I’ve learned it’s okay to mourn for the girl that I used to be, to remember her. Then I try to bring back that fire and return to this life that I am blessed to live.
The Time that is Given 