It’s my first loss since becoming an
advocate. I knew in June when I got there, that this was me beginning to walk
in purpose and that it was going to come at a cost. So many amazing women-at
different places in their journey. Some 10 years out, some 10 months out. Some
in the midst. Some returning to treatment, many struggling with side effects,
and several living with it. Day in and day out, accepting that it will
eventually take them but not today. Ladies so alive, stepping out in
strength, to share their story so that we can eradicate this ugly awful thing
that has derailed us, stolen from us, but made us stronger.
The cancer community is so interesting to me, because cancer
does not discriminate. When you walk into the chemo room, it’s raw humanity.
All races, genders, socio-economic levels, all in a fight to live. In its own
way, it’s a beautiful picture of the human spirit. What I have found is that
cancer brings out who you really are. It either makes you bitter, ugly, and
angry or it becomes a chrysalis where you transform into this beautiful
creation with this ability to love well and see beauty that others cannot.
The advocacy community is full of people who want their
cancer experience to mean something. People who live on purpose and seek to share
their stories, so there will be less stories. Advocacy costs. It means that you
don’t put your cancer in a box and never think about it. It means you’re
actively taking it OUT of the box on a regular basis. You’re talking about
things that are hard, things that you yourself are still mourning, struggling
with, afraid of, and wish never even happened. You are making yourself
vulnerable in hopes that others will hear and just maybe that one person will
take action. You are walking into hard spaces, where people are still being
treated and dealing with life altering side effects that you’re still
processing yourself. You are meeting amazing fighters and letting them know
that you don’t have all the answers but that they are not alone. These fighters
become your tribe. They become your family. And when you meet one, you know it.
You know it because their spirit permeates the air and it’s like looking in a
mirror.
I “met” Jillian online back in the spring. I had seen this
amazing photo of her on the Cervivor page, where she was showing her scars and
ostomy bag. At the time I wasn’t sure if I was going to be able to keep my
bladder. I was preparing for the worst but hoping for the best. I found her
story online and there were similarities. Same stage, SO MANY bladder and
kidney problems. I found her on Facebook and reached out to ask questions, as I did with a couple of the other Cervivors who I found with severe radiation
damage. Much to my surprise at the time, when I reached out to these women, they
actually reached back. Wow. These women and their stories made their way into
my mind and heart. I felt stronger for speaking with them. I felt like whatever
was next for me, I could do it. They were living so bravely and if they could
it, so could I.
Jillian used humor and I was so relieved. So many of our
post treatment issues, with cervical cancer, revolve around pee, poop, butts,
and vaginas….I had personally found humor but Jillian was the first one to
break the ice with me there and make me feel like it was okay to be scared and
to laugh at the same time. She had such a balance of honesty and humor. She made
me feel normal and like whatever was coming my way, that it didn’t mean my life
was over. I could live and thrive with a bag, if that was going to keep cancer
out of my body.
Her interaction with me in those moments, meant the world to
me. It was Cervivors like Jillian, who drew me into this community. Her spirit
and strength will live on, in so many ways-in her boys and those closest to her.
For me, I will take her kindness, laced with humor. I will throw the life line to other Cervivors
out there, letting them know they are not alone. She made a difference in my journey, and I
will share my story, and share my story, and share my story, until I have no
breath. Until there are no more Jillians. I will walk in this purpose. I have counted the cost and will continue to walk with a vengeance.
By the time Cervivor School came around, I was well enough
to go but she wasn’t able to make it. After a message about watching the poop
come out of her bag (I’m telling you this was woman was so funny!), she told me
“don’t worry, we’ll meet soon.” I knew she was sick and I knew that it was not
looking good.
I got a message from her in July. It was a poem that had been circulating that was written by a young girl with terminal cancer, in a New
York hospital. For me,
I have gone back and read it many times since. Little did Jillian know that I
was still struggling and needed this to push me, to live my best life after
cancer:
SLOW DANCE
Have you ever watched kids on a merry-go-round?
Or listened to the rain slapping on the ground?
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You better slow down.
Don't dance so fast.
Time is short.
The music won't last.
Do you run through each day on the fly?
When you ask, “How are you?”
Do you hear the reply?
When the day is done, do you lie in your bed,
with the next hundred chores running through your head?
You'd better slow down
Don't dance so fast.
Time is short
The music won't last.
Ever told your child,
We'll do it tomorrow?
And in your haste,
Not see his sorrow?
Ever lost touch, let a good friendship die
Cause you never had time
To call and say,'Hi'
You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last..
When you run so fast to get somewhere,
You miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift....
Thrown away.
Life is not a race.
Do take it slower
Hear the music
Before the song is over.
