Thursday, March 12, 2009

Am I Dying? The Untold Story

Have you ever been going about your day when suddenly a smell or song or even a feeling creates a memory of a past event? Like the whiff of a pipe that reminds me of when I was little and my dad would light up... or the sound of birds in the early morning that brings me back to our yearly family trips to Disney World. We all have so much locked away in our heads and have no idea when the memory will sneak into our consciousness.

This time of year is one of those times -- it's quite an emotional period for me. It was three years ago that my world spun upside down and sideways and then back again, making me wonder if it was actually the end of the road for me -- the three weeks and one day that rocked me to the core, that made me question whether I would ever have the chance to watch my children grow up.

But before I get too ahead of myself here, let me give you a little back story. I know I've shared tidbits of my experience in past posts, but this here is my story. I share it, not only because it's cathartic for me to see it now -- all in black and white, but in hopes that someone else just might benefit from it, whether they recognize themselves in my story or even someone close to them.

I'll start back at what feels like the beginning. I was a newlywed -- enjoying life and feeling good. I had a wonderful new husband, a nice home, amazing friends -- I had everything I wanted... except babies.

I remember the day well. I was standing on the back patio of our little house in Burbank, talking on the phone with my sister. She, as well as two other sisters and a couple of cousins, had been tested to see if she carried a genetic mutation that would increase the likelihood of breast and ovarian cancer -- she was found positive.

Now one might think that the news would've sent me into a panic. I had been told my entire life that I looked just like my sister. In fact, I even wondered off and on throughout my childhood if she might have been my biological mother and had me so young that no one would admit it. (Don't judge, I was a little girl with a very active imagination who couldn't remember the mother who died when I was three.)

But I didn't panic.

I think my sister being 14 years older allowed me to feel invincible just a little bit longer. I hadn't even had kids yet, so why would I test for something like that. I was young and strong -- the last thing I needed was to even think about such things.

My sister revealed her plan to me. She would get her insurance company on her side and undergo prophylactic surgery. Prophy-what? I didn't even know what that word meant. She explained her feelings -- and that prophylactic just meant preventative -- to me. She was to kill the chances of cancer before cancer killed her. That should have made sense, but all I could hear was someone who was afraid... who couldn't separate her fear from logic.

I remember that conversation like it was yesterday because it didn't end well.

Frankly, I didn't understand why someone would have surgery when they weren't even sick. But, then again, I wasn't a 17-year-old girl who watched her mother die during what should have been the most exciting time of her life.

I didn't talk to my sister for a while after that. I wasn't upset with her but I knew my reaction had shut her down when it came to me. I got a call a couple of months later and heard that my sister was hours away from surgery -- that she was, in fact, going through with it. I reached out but didn't catch her before she went in. If something had happened while she was under for 14 hours, I would've never forgiven myself.

My sister woke up cancer-free. Her 87% risk had just been reduced to less than one percent -- considerably less than the seven percent risk that the average woman has. I felt happy that she could breathe a sigh of relief.

Two kids later: Jeff and I and our newborn baby boy arrived at Cedars Sinai in Los Angeles. I was meeting with a genetic counselor. Baby Brady was quite the fussy little man, I remember holding and bouncing him in my arms as I heard all the stats my sister had already shared.

In my brain, it was like I could only hear the Cliffs notes version of the story. If I tested positive... blah blah... 87% risk of breast cancer... yadda yadda... 50% ovarian cancer risk... mmm hmmm... got it. I can still see the reaction on the doctor's face when I shared so confidently, "My sister had surgery but that's not me. I'll just keep getting checked if I'm found positive." Her expression said 'Oh yeah, I've seen your kind before. Just you wait...'

She was right.

A few weeks later, I was home with my boys and Jeff was getting ready to head to work. His job started at 6pm. We realized that we needed a few groceries and Jeff offered to quickly run down to the store before he had to leave in 20 minutes.

He was barely out the door when the phone rang.

Dr: Jackie, hi... it's Dr. Gordon.
Me: Hi.
Dr: I got the results. You do, in fact, have a mutation.
Me: Uhh, ok.
Dr: We should schedule a follow up to discuss your options.
Me: Ok, yeah. No problem. I'm good. I appreciate the call.

I hung up the phone and immediately panicked. But not because I tested positive. All I could think was how am I going to break this to Jeff? He's supposed to be at work in an hour and there's no way he can call in sick -- he'll get fired. But he'll be so upset -- I can't tell him and expect him to be safe on the road. What do I do?

Jeff walked in and put the groceries away. I looked at his face and knew what I had to do.


I gave him a kiss goodbye and sent him on his way. He was none the wiser that my world was starting to slowly cave in around me. I couldn't breathe. It was like when I found out I was pregnant with Brady and didn't want to call Jeff at work to tell him and chose to wait until I could share it face to face. Except this time, what I was holding back wasn't a new life growing inside of me, but the chance that cancer was growing inside me, waiting to take my life away.

That night was a blur. I got the boys to sleep and crawled into bed, feeling like my body had betrayed me. Could I have cancer right now? Was I going to suffer the same fate my mother had? Is this punishment for feeling so young and careless and untouchable?

I feel asleep feeling like this was the beginning of a scary new chapter. And the love of my life -- my rock -- was across town with no clue that we had just been dealt this blow -- that our lives were about to forever change.

What had I done?

To be continued...

Part 2
Part 3


Tami and Bobby Sisemore Family said...

Girl when does the book come out? You are such a good writer! You have me hooked and I know a good bit of the story already! I am so proud of you for sharing all of this and maybe helping another woman! You go girl!

Big hugs,
Noah's mama

momwithfaithandhope said...

What a cliff-hanger! But since I just gave you a hug, live and in person, I'm feeling great knowing that I'll soon read the rest of this untold story, but I'm also comforted to know the story as it's being lived this very moment. Hugs

Nicole said...

My mom is a breast cancer survivor and my OBGyn. is suggesting i get the "genetic testing" as well . . . . thanks for sharing your story.

JFo said...

HAHA thank you for making me laugh with the notion that you thought you were my mom's child bahahaha. that's priceless. I guess I never noticed y'all looking so much alike.

Also, thank you for making me cry, reflecting on that period in my mother's life. I remember her talking to you and I remember her being upset. I remember her decision, very much based on her not wanting us, her children, to experience the pain she went through when she was a teen. At the time, I was about the age that she was when she experienced losing her mother ((I remember turning 17 and recognizing it as the age my mother was when she lost hers, wondering selfishly if I was destined to the same fate, entering the adult world without a mom)).

She made the bravest decision anyone could make, and she did it with more courage and confidence than I could ever imagine.

My mother is the bravest woman I'll ever know. When your children grow up and hear your story-though they weren't 17/18 years old and aware of as much as I was during my mother's experience-they will recognize you as the brave woman you are as well.

I was fortunate enough to be found negative when I tested for the gene, so I cannot imagine the fear faced by the women who are not as lucky as I. I am scared every single day for my sisters (and my brothers!) who have yet to be tested.

Props to you for sharing your story and putting it out there for people to use in making their own decisions about getting tested or considering their options after getting tested.

It takes so much bravery for some just to get tested and have that knowledge in their hands.

sorry for the long, jumpy comment...


Anonymous said...

Oh my this is worse than a cliff hanger on soaps. jackie I am so proud of you for telling the story. You are an incredible writer. looking forward to hearing the rest. Hope to see you soon!