Sunday, June 9, 2019

The Lifesaver

Pelvic exenteration is a radical surgical treatment that removes all organs from a person's pelvic cavity. The urinary bladder, urethra, rectum, and anus are removed. The procedure leaves the person with a permanent colostomy and urinary diversion. In women, the vagina, cervix, uterus, fallopian tubes, ovaries and, in some cases, the vulva are removed. (Wikipedia)

2 years ago today I walked into Roswell for this surgery. At 35 years old I was going to lose the ability to pee, poop, and have sex like a "normal" person....and I was ok with it...I had to be.

I was ready. I had mentally prepared. I had asked all my questions. So.Many.Questions. I had met with an ostomy nurse. I was fitted for my bags, had my body marked where the stomas would be created during surgery, and even had the schedule for an ostomy support group.  Starting June 9th, 2017, this was going to be my life.

While I was prepping with my doctors and my family for my new life I didnt share  many details on what kind of surgery I was going to have on here. This is why. It was a lot. I found that everyone around me took it harder than I did. Also, I hated hearing people tell me how scared they'd be if it were them. I guess my survival mode really carried me through it. But I was as prepared as I thought I could be and I had expected to wake up that afternoon with urostomy and colostomy bags hanging from my abdomen.  I had come to terms with it. In true Lesley fashion, I had found plenty of ways to make jokes about it and make people feel uncomfortable. Like....Hey, it's cool that I won't have to get out of bed to pee...and...I can poo while we're having a conversation and you'll never know!

2nd Opinion...
As I had done previously, I went down to NYC to visit the fine folks at Memorial Sloan Kettering Cancer Center to see if there was any way they could save my "parts". There wasn't. The funny thing was, when I asked if there was any advantage to having the surgery done at MSK versus Roswell - like maybe a surgeon they recommended - The surgeon at MSK told me that he actually studied under my surgeon at Roswell and that I was in good hands in Buffalo. So back to Roswell I went.

So what actually happened that day in the operating room?  The chance of me leaving the operating room without at least a partial exenteration was slim. Going in, I assumed best case scenario was I only came out with one bag.  According to my surgeon, during surgery they took out the tumor and then they sliced and removed the tissue around where the tumor had been. With each piece they removed, they tested the tissue right then and there for cancer so they knew how far they had to go. It ended up coming down to one last slice - if it had cancer, then everything had to go and the exenteration was on.  Luck was on my side...the tissue had no cancer. They didn't have to remove everything...but they removed a lot of things. In the end I came out with a radical hysterectomy and partial vaginectomy....and one gnarly scar that starts up around my belly and goes almost all the way down.
Radical Hysterectomy is the removal of the uterus and the ligaments (tissue fibers) that hold it in place. The cervix and an inch or 2 of the vagina around the cervix are also removed. (
Vaginectomy is a surgery to remove all or part of the vagina. (Wikipedia) you know about my parts - or lack thereof.

Today I'm doing well for the most part. Going through menopause in my mid-thirties is not a real treat, but it's manageable. During my surgery, I suffered nerve damage that took months of pain killers and physical therapy to get through.  As a result, I have some difficulty with my back but I try not to let it stop me from doing a darn thing....except complaining once in a while.

Sometimes - on tough days - it feels like my surgery just happened and I get emotional like I basically was the whole summer of 2017.  Other times it feels like a million years ago and I lose sight of the horrible details.  I'm surprisingly fine with both extremes. The lows make me appreciate the highs and the highs remind me to appreciate all my days.

2 years. 2 years cancer free. I couldn't be happier to be feeling the way I am today and celebrating my life. But I'm a survivor and with my past there's always that worry that it'll come back. We try to keep those worries to a minimum. Life is too exciting to spend all your time on worries. It's an adventure.  Don't forget to live and have fun!

2 Years Cancer Free!!!

A trip down memory lane...
I asked Ben Richey, the photographer at Roswell Park, to take some "before" pictures. He had documented so much of my journey and I thought this was an important part. This was taken the day before my surgery.  The two Xs mark where my stomas would be for my ostomy bags. I thought maybe some before and after shots would help normalize the bags and help other young women who had to go through the same process.  That part sounds silly to me now, but it was one of the reasons I wanted to have this.

The morning of my surgery in the waiting room

The morning after - I survived...and no bags!

Moved from ICU to a regular room - in my red socks

The best flower card

FINALLY out of the hospital

Toby's last day of school was my 10th and final day of having a catheter (Guess what's in that yellow canvas bag behind his back?!? Ha!) In reality it was brutal. I was so uncomfortable from it and in so much pain from the nerve damage....but we didn't know it was nerve damage yet. The pain was a mystery for a few more weeks. Honestly, the first month after my surgery was quite a nightmare. 

Now I hate ending on a bad note so I will add...I got through it. I got through it all. It was by far the hardest thing I've ever experienced but I did my best to smile and laugh my way through as much as I could. Your attitude during bad times makes all the difference. Things will always get better.

Thank you for letting me share my life with you. Cheers to happy, fun adventures ahead.


Kathy Castile said...

Tears,heartache,smiles, laughs and amazing happiness were all felt reading this. Leslie you are a true warrior. I knew that before reading this and gf!!
2 years!!!! Gods blessings to you always and forever. Love ya!! Kathy

Amber Koeppel said...

You rock chica! It’s patients like you and your strength and positive outlook that enable the doctors and nurses to do what we do ����

Peter Johnson said...

You are amazing. We haven't met, but I went though something similar. Colon cancer resulting in removal of my large intestine and rectum. Life changing. 11 years and appreciate every day I get to get up and enjoy the unpredictable adventure that's often around the next corner. LOVE your quote above "Life is too exciting to spend time on worries. It's an adventure. Don't forget to live and have fun!" Perfect! I went to high school with your Aunt Beth - she's clearly one of the funniest people on earth. Thank you for sharing your story - it will absolutely serve as an inspiration to many people faced with similar circumstances. Great job Lesley - go have a blast and enjoy the adventure for many, many years to come.