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. (Cancer.org)
Vaginectomy is a surgery to remove all or part of the vagina. (Wikipedia)
So....yeah....now 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.

6/8/17

The morning of my surgery in the waiting room

6/9/17

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

6/8/17

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

6/11/17

The best flower card

6/12/17

FINALLY out of the hospital

6/16/17

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.

Doing The Best We Can

Sometimes I wear my red shoes just because I like them....but usually there's a reason. Maybe I have an appt at Roswell, maybe I'm feeling sad and need a boost, maybe I'm nervous and I need their super powers. Yesterday I needed their emotional support. I wore them all day.

I received a message from my friend Liz. Liz and I have so many connections through friends and family that it's baffling how we haven't been friends for 20 years already. The reason we met? Cancer. She was the one that finally got me to join the Young Adult Cancer Program at Roswell. She's one of the people that gets it. We talk about stuff people our age should not be talking about or worrying about. Our friendship is priceless. She texted me yesterday to tell me that one of the members of our group had passed away. Her name is Casey. I didn't know Casey very well. We weren't friends - not because we didn't like each other, but because we just didn't cross paths enough that we had gotten to know each other. From what I've read about Casey in the last 24 hours, through facebook postings from my friends, is enough to know that I really like Casey and we probably would've gotten along great. I read that she was positive throughout her treatment and she was the ray of light that so many people need while they're going through scary times. She was an amazing friend who always wore a smile.

I was sad when I read the news from Liz, but what followed the news was completely unexpected. It hit me like a ton of bricks and I broke down. There are certain things that make cancer real. Casey was my age. She, too, had a gynecological cancer. That's about as real as it gets.

A few months ago I went to my check up in the GYN clinic at Roswell. I remember that day perfectly - as Roswell memories seldom fade. I was in a really good mood. I was feeling great. I was chatting and joking with the women at the desk for a while. We've gotten to know each other over the last 3 years and their happy faces are comforting when you walk in. I remember sitting down after checking in and seeing a woman in the chairs against the windows. She didn't look well. Seeing people like that in Roswell isn't uncommon, but seeing them in that department, having been in rough shape in those same chairs, hits close to home. I remember the man sitting with her looked like someone I used to work with but I didn't want to bother them to say hello. Today I read Casey's obituary. That man I saw? That was Sam. Sam and I used to work together and he's one of the nicest men you'll ever meet. Yesterday Sam lost his daughter. That woman in the waiting room was Casey.

Moral of this story? Cancer is stupid and it makes me angry. Casey didn't do anything wrong. She didn't deserve this. Her family and friends don't deserve this. Another member of our group at Roswell made an excellent point at a seminar recently: we're not battling cancer. It's not a win or lose situation. We're doing the best we can. Casey didn't lose her battle with cancer, she did the best she could. We're all just doing the best we can.

Therapy kicks.

Conversation with Liz.

Forever grateful for my friends.

My First Ride - 2018

To give you a full life update AND tell you all about the Ride for Roswell seems a little overwhelming right now. So I'm going to stick to a Ride recap, but I'll tell you that I'm doing ok. I'm not as great as I'd like to be, but I'm sure as hell doing better than I was a year ago!

Crazy that it's been a year, right? Last year I sat at home on the day of the Ride as several friends rode in my honor. On that day I would've given anything to be able to join them. This year? I rode with tears in my eyes and the happiest heart I could have.

Last week the emotions started the night before the race during the Celebration of Hope. Cancer survivors and their families get together to celebrate the hope that Roswell represents. It's impossible not to shed a tear. Survivors are grouped by cancer type and march together in an opening ceremonies type procession which eventually leads to the lighting of the torch - this torch stays lit until the last rider crosses the finish line the following day. The entire ceremony is very emotional. As I was waiting with the GYN group, I talked and joked with the woman next to me. Turns out she lives close to where I grew up and her husband and I graduated from the same high school. Classic Western New York two degrees of separation! And I've learned over the years that this is classic Roswell Park as well.

While we were getting ready to line up for the procession, I saw a familiar face. Laura and I have been messaging with each other for about a year now. She is an osteosarcoma survivor. For the last year, we've bonded over our cancer battles and how to be good moms to our little ones while we're not feeling our best. A lot of our chats happened in the middle of the night when neither of us could sleep - because of pain or stress or side effects. The funny thing about our friendship was we had never actually met in person...until this night. I immediately recognized her beautiful family, from pictures she had shared, and I rushed to say hello. I'm so grateful for relationships like this. While support from friends and family is important and necessary, having some people who truly understand how you feel is something special.

The morning of the ride was drizzly, but that didn't stop almost 8,000 riders! So crazy! I rode 20 miles with Shannon - one of my Red Shoe Adventures teammates. Last year I couldn't imagine going that far. Frankly, just sitting on a bike last year seemed impossible - I could barely sit on a chair.

I was honored to be one of eight members on the Red Shoe Adventures team. I'd like you to meet the other seven:
Shannon - we've worked together for a few years now and most recently we ran together as part of a Buffalo Marathon Relay team.
Lindsay and her father, Chuck - Lindsay was the reason my son made it through day care. They shared a special bond from day one. Over seven years later and she's still an important part of our family.
MJ, Grady, & Katie - MJ and I worked together about ten years ago and I'm so grateful we've stayed in touch. We were part of the WOTAs - basically a group of kick-ass women. MJ rode with her husband Grady and her daughter Katie was with us in spirit!
Tiffany - Tiffany has been one of my sister's best friends since high school, so she's been a part of our family since we were young.
I'm grateful for each member of the team!

Another important part of the team has been all of you. When I first set up my donation page for the Ride, I set a goal of $1000. It was a lot for my first ride, but with all that Roswell Park has done for me, I felt I needed to do something big in return. The day before the ride, when I checked in, I found out that I almost TRIPLED my goal! Incredible! You all are incredible. And our team total? $5,292!

I owe one special donor a gigantic thank you for making that number possible. One of my fundraisers for the Ride was to sell t-shirts with my red shoe logo on them. I had asked my friends on Facebook for recommendations for affordable options for t-shirt design/production. As always, my pals came through with plenty of ideas. Then I got a private message from someone I haven't spoken with in almost 20 years. A high school friend and swim teammate. He offered to buy all the t-shirts I needed so I could sell them for 100% profit. Completely unexpected. Brian Davis - from the bottom of my heart, Thank You. That was incredibly kind and generous.

One of the special touches to the Ride is the finish line. Painted on the pavement is the name of every survivor participating in the Ride. Crossing the finish line in any race is a big moment, but crossing the finish line at the Ride For Roswell and seeing all those names - the names of the people you're riding for - including your own - it's indescribable.

After the ride, a woman found our team tent and presented me with this hat:

This kind woman had marched, the previous night, with my mom in the breast cancer group at the Celebration of Hope. The two of them had struck up a conversation and my mom had told her my story - about my red shoes and my blog and the team. My mom had been wearing her red shoe gear. She happened to come across this hat that was for sale at the Ride and bought it, remembering my story from the previous night. She hoped to track me down and give it to me.

Why does this hat say Red Shoe Adventures?

I'm not sure how far this dates back, but each year, there is a giant piece of fabric that riders/patients/survivors can sign. Then New Era takes the fabric and uses it to make hats. The thing is, this was my first Ride - so it wasn't me that wrote that. I messaged a couple friends to see whose art work it was, but no one claimed it. The next morning I was checking the "On This Day" memories on Facebook and this is what I see:

My friend Liz drew this at the 2017 Ride For Roswell and she had posted this picture on Facebook last year for me to see. Liz and I had met just a few months prior to the 2017 Ride at our local YMCA where we were doing the Livestrong program together. Livestrong is a program to help cancer patients and survivors build strength after treatment.

The woman who bought the hat had seen MJ, who was wearing her Red Shoe Adventures team shirt, and that is how she found our tent.

CliffsNotes:

Spring 2017 - Liz and I meet.
June 2017 - Liz draws Red Shoe Adventures message at Ride for Roswell

July 2017-June 2018 - New Era makes message into a hat

June 22 2018 - Fellow breast cancer survivor learns of my story from my mom

June 23 2018 - The hat made from the fabric that Liz drew on - a year ago - is delivered to my team tent.

Can you believe this story?? What a special gift from the weekend. Thank you, my friend!

I know this post is a little late but thank you, friends and family, for your support - both emotionally and financially during the Ride. Thank you for your donations to Roswell Park and more importantly, for your words of encouragement leading up to the ride.

Here are some more pictures from the weekend:

Team!

The crew at the Celebration of Hope

Cheering for the torch lighting

Sparkle shoes for a special occasion

Cancer Made Me A Bad Mom

This post is brought to you by the bags that live under my eyes.

I know it's been a while since you've heard from me. As usual, I think I've started this at least a dozen times. Maybe this one will stick.

I'm not sleeping so well. Before the stupid cancer, I was a championship sleeper. For real. But by the time I felt like sleeping last night, my clock said I had about four hours until I'd hear my alarm. Awesome. I was thankful for a busy day to keep me going today. After work I made dinner, helped little dude with his homework and BAM it was bedtime. The tired mommy kicked in when the kids thought it was perfect timing for wrestlemania instead of getting ready for bed..aaaand I kind of lost my shit. Why must mom's have to scream like psychos in order for their kids to listen sometimes? Why does this happen?

I know that last part isn't specifically related to cancer. If you're a mom and you haven't lost your shit a few times....then you're mom-ing wrong.

There are certain things that bring out a little PTSD for me. I'm not using that term to make fun - it just seems like the most relatable way to get my point across. When I was going through treatment and then for the few months immediately following my surgery, I felt like a super shitty mom. It was so hard to keep my cool while I was feeling like garbage. And I was always tired and cranky and sad. I didn't feel like going on adventures and doing fun stuff. So many times Toby told me he just wanted things back to normal. He wanted me to have hair again and he wanted to go on adventures and have a happy mommy again. He didnt want me to come to his school or go out in public with him unless I was wearing a hat. It made my heart sad. As my hair started to grow in, Lainey asked me if I was a boy because my hair was short. In her little 3 year old mind, that made sense. She wants me to have long curls like hers. Curls have super powers...at least we think so. Lainey recently turned 4 which means I've been sick for about half of her little life. That crushes me. I feel like I've missed out on so much. When I'm feeling up to it, I'm packing in as much fun with these kiddos now as I can.

So PTSD. Where does that fit in? Losing my cool - having a short circuit - it's not like me. It takes me back to cancer days and I don't like it. Seeing pictures of when I was bald - they're starting to bother me. I was completely fine with it while I was going through it...but now seeing those pics makes me sad. A lot has changed for me. A simple thing like going to the bathroom - not the same anymore. Normal sex life? Ha! Nope. Ugh.

I had lunch with a friend recently who has been in the same boat. She said while you're in the middle of treatment, you're in survival mode. And I was. I just never thought of it like that. There was so much going on that all I had to concentrate on was keeping my adventure going. Now that THAT part is over, I feel like it's all catching up to me. At the time, people would make comments about how they don't know how I do it and how I stay positive - I was just staying alive.  I was making my way through it. It's what I had to do. Now I look back and I'm like WTF?!? Do you realize what I did?! How did I do that?!? My brain is finally catching up to everything my body went through.

When I started to lose some of the pain after my surgery, I was given the ok by my physical therapist to work out again. Due to certain circumstances, I think lengthy runs are a thing of the past for me, so I tried something new. Eager to get back to "normal", I pushed too hard and did too much. Getting hurt scared me. After the horrible pain after surgery, the pain of this injury stirred up those old feelings. There's an underlying fear of that nerve pain just magically coming back. I ended up taking a few months off and now I'm slowly easing into exercise again.

What does slowly easing into things mean? I bought a bike and I'm training for the Ride for Roswell. Ha! I was in no shape to do it last year, so this year I've started the Red Shoe Adventure Team. I'm working on being able to sit on a bike for 20 miles. I may end up with one of those giant comfy seats or a bum that's super sore, but dammit I'm doing this race.

This blog is therapeutic. I never want people to feel bad for me - That should never be a thing. If you know someone who has cancer or had cancer, know that "cancer free" doesn't mean their life is back to normal. It never will be. And sometimes recovery and learning how to live with the new normal is harder than the treatment and the cancer ever were. For me, I don't think my new normal is a bad version of me...it just feels completely different and I need to get to know this new version. I really feel like a completely different person. That's something hard to share when you look "healthy" and "normal". I'm learning who the new me is one day at a time and I hope you'll stick with me as I find out. I think it may be time to hang up the old sneaks and break out a new pair of red shoes!

Cheers to new beginnings.

Shameless plug: 

Join my Ride for Roswell team or donate HERE.

My new ride!

Thanks to Campus WheelWorks for the help with picking out my new wheels!

Family adventure weekend!
Glass floor at the CNTower in Toronto

Family adventure weekend
Niagara Falls, Canada

Lainey turned 4!

Thankful

Happy Thanksgiving! I pretty much have everything to be thankful for. Im alive. Theres that. My family and friends who have supported me this past year - I've been horrible with thank yous. To everyone that has sent cards & messages, gifts, dinners - even if I failed to say it out loud or write it, I appreciated every bit.

To everyone at Roswell - goodness, everyone there is amazing. To my doc - shout out to PF - thanks for saving my life again. That was kinda great. The staff in the GYN clinic - I'm sure they're sick of me by now, but I'm grateful each time I'm in there that they're the ones helping me. And everyone else - I won't list everyone as I think I've visited almost every department in that building - thank you.

To my husband - I don't always give you the credit you deserve. I'm thankful for you. Everyday. The kids and I are so proud of your hard work toward your dream - all while working full-time, putting up with me, and being an amazing dad.

To my children - Your hearts are so big and your smiles and giggles are healing. I'm so grateful to be your mommy and to watch you grow. You're going to do great things and I'll love you forever and ever.

To all of you - There are so many of you that I don't even know - yet you support my adventures. I'm not even sure how that happened but I'm grateful for each and every one of you.

To my family and friends (again) - I love you. Thank you for letting me be a part of your lives.

To my red shoes - my mental and physical support. You give me peace and you make me feel safe.

And now a list of random things that I'm thankful for that don't always get the acknowledgement they deserve...

My pups.

Public bathroom stall doors that open away from the toilet instead of towards it.

Dark chocolate.

Red lights on the way to work so I can do my makeup.

Comfortable pants.

Plastic spoons with rounded edges so you don't feel like you're cutting your mouth open on every bite.

Chapstick.

When the Christmas tree lights are the only lights on in the house.

Nice people.

Looney Tunes.

The Village of Kenmore for giving my family the small town feel I grew up with and for having giant recycling totes. 

Routine.

Laughter.

Adventures.

Happy Thanksgiving, All!

Can't Make This Stuff Up

The coolest thing happened tonight.  

Let me explain.

I made a promise to myself during all this cancer crap that I was going to start doing things that scared me, or things that intimidated me. Big things to little things. It's on. 

Tonight I started a new adventure. It involved going to a new place and meeting new people and doing something that intimidates me. Use your imagination. This new adventure is kind of a secret for now.

During tonight's adventure I made a new friend. Ha! It sounds like kindergarten class. We introduced ourselves before the adventure and ended up chatting for a bit after. As we were getting ready to leave, she changed her shoes.  What did she put on? Red chucks! Come on! I asked her if I could take a picture of her shoes and quickly gave her my story. She probably thinks I'm a lunatic...but...well...that's my life.

It's About Time

I think I've started to write this entry at least a dozen times over the past couple months. So here we go again...

Hi. It's me. My name is Lesley and I'm a two-time cancer survivor.

"Hi Lesley"

My summer vacation came to an end a few weeks ago. 4 Months of relaxing poolside while downing mojitos...obviously. What a dream it's been.

I'm back to work. My return was exhausting both physically and mentally. But it's nice to be back in a routine and talking to adults everyday...nothing against my 3 year old.

I can't explain how great it is to be feeling better. I'm not 100% but I think I can get there someday. To be honest, for a while, I didn't think I'd ever get to where I am now. I had some low points last year during radiation, but this....this was a whole 'nother ballgame. That f*cking pain was unbearable. I literally could not function at times. I ugly cried. A lot. I said the words "I just can't do this anymore" more times than I'd like to admit. I got mad at everyone around me because they couldn't fix it and they'd just stare at me like I was one of those sad puppies in the Sarah McLaughlin commercials. Ugh. It was shitty. Beyond shitty. BUT....hopefully the worst is behind me. I'm working on getting better everyday. No clue what my new normal will be, but I'm eager to find out.

I'm confident I've taken more drugs in the last 4 months than I have in my entire life.  Before they discovered the pain was from nerve damage and got me on meds that worked, I couldn't take enough pain killers. My friends would come visit and I'd have to time my dose just right so they'd kick in when they showed up. I was so eager to get out of the house that if we were invited somewhere I would double a dose just to get through an event. Proud? Nah. Desperate? Like you wouldn't believe.

I was lucky enough to have a ton of friends and family join me at Roswell so I could ring the bell and celebrate being cancer free. Im so grateful for that day. The sea of red shoes is something I'll never forget. This was one of those events though that I had to time my drugs just right for. I was in so much pain that day. But I was determined to make it special. Afterwards at dinner I was so uncomfortable that I barely moved from my chair. Here all these people were there to celebrate and I couldn't even get around to visit with everyone. It was heartwarming yet frustrating as hell all at the same time.

The thing about the drugs was....I hated every pill. If one more person said "but that's what they're there for", there was gonna be a battle. Before all this, I didn't even like taking ibuprofen for a headache. I had to be hurting bad. And here I was, constantly checking the clock to see if I could take another dose. I think this is where I was most thankful for my stubbornness. I was gonna find a way off those pain killers and no one was going to stop me. Luckily over time I was able to wean myself off - even before my pain docs gave me the ok. I wanted to be done and I was fine with some suffering. I won't share my pharmaceutical details, but we'll just say my house is a lot less attractive to druggies now.

Mentally I've been doing a lot better. I'm lucky to have my family and friends, that's for sure. Last week I had a PET scan. My first since the surgery and by far the most stressful scan I've ever had. I knew and trusted that my doctors got all the cancer out like they had said but there was still that chance of it showing up and having the last 4 months of hell be pointless. Having the confirmation from that scan was everything. If you saw me the day I got the results, you would've thought I had won the lottery. It was the mental boost I needed. I still get in funks here and there but I think a big part of it is that I'm not as active as I used to be. I've been in physical therapy but I haven't attempted to go for a run yet or head into the gym. It scares me a bit and I'm just so sick of starting over. But I think once I can get back into a workout routine I'll feel better about myself. I feel like my body is deflated. And goodness that scar has my bikini bod (ha!) all kinds of messed up.

This is a confusing post, isn't it? You're probably thinking, "Is she sick? Is she healthy? Is she strong? Is she off her rocker?" All of the above.

I'll try and do a better job of keeping you updated. It's been very hard to find my voice and to find the right state of mind to write. I want to be honest and open but because of the nature of my surgery, there's so much I'm not willing to share. Which is sad for you because some of it I've found makes a damn funny comedy bit....but it's not ready to be released to the public yet. Stay tuned.

Bell ringing day. July 14, 2017

I'm incredibly lucky.

Photo courtesy of Nancy Vanderlinde

This was so cool! 

Photo courtesy of Roswell Park

Bell ringing & birthday dinner. 

So much love.

These are my people.

You work a little harder when little eyes are looking up to you.

Starting to feel great after physical therapy.

Photo courtesy of random woman walking down the street. Yup. This happened. 

Return To The Big House

I'm writing this in bed. My own bed. Why does that matter? I just finished a 5 day stint in the big house and last night was the first time I slept in my own comfy bed. I went to Roswell for an appointment last Thursday and didn't come home until Monday. Yes, you read that right.

I tend to put on a strong face and push my way through tough situations - probably more often than I should. I have been having issues with pain since the surgery. At first they said it was a pain expected with the surgery I had. But it wasn't getting any better. I tried so hard to muscle my way through the pain for weeks but my body ended up just giving up. It couldn't be strong anymore.

Thursday morning, before my Roswell appointment, the pain was so bad I had a panic attack. Ever had one of those? It was scary and unexpected. I think it was the point where my body said no more. It was shutting down. The pain meds just weren't working. And I couldn't keep my strong face on anymore.

My pain was confusing to my docs. This wasn't a normal response to the surgery. They wanted to do a special test but it couldn't happen until Friday because it was something that had to be prepped for 24 hours. Because of this and the fact that I couldn't get the pain under control, they admitted me. The next morning we did the test and it came back normal. Which is good but bad at the same time. There was nothing abnormal, but then that leaves us with no answers again.

They decided they weren't going to send me home until we could get the pain under control - to the point where I was comfortable and could handle it on my own. I ended up being set up with the pain management team. The Dream Team! These guys were so thorough with figuring out my pain and explained how different pains have different treatments. I knew with them I'd get the help I needed.

They suspected I have nerve and muscle damage from the surgery. The good news is, they're playing with my meds and getting me on a plan that will help me function like a normal person. This trial and error is why I stayed in the hospital for 5 days. They needed to make sure what they were giving me was going to work. The bad news is, because it's nerve damage, my recovery time has gone from days and weeks to months and years. Nerves take quite a bit of time to heal. Thankfully the meds we're working on will help me return to a functional human while I heal.

So this is my story. I thought I'd feel better by now, but I'll learn to adjust to this new life. My birthday is coming up on Monday and I usually celebrate for the whole month! Instead, I'm going to celebrate this Friday. I'm going to ring the bell at Roswell! My birthday definitely isn't ruined. I'm turning 35 CANCER FREE! That's probably the best birthday gift a girl can get.

If you'd like to celebrate with me, be in the main lobby of Roswell Park at 4pm on Friday as I ring that bell.  And dont forget to wear your red shoes!!!

I was able to escape and walk around in the garden while I was there. It's such a pretty space! This is me...in my pajamas.

Family selfie in my room. My favorite visitors.

My hubby and kids brought dinner and we ate together in the garden. Then we watched the kids play. It made my heart very happy.

Baby time is healing time! My sister and nephew came to visit in the garden, too!

It's Going To Be Worth It...

I'm struggling - even as I start typing - with how to write this entry. I so badly want to put on strong girl panties and talk about how great this is to be done with the surgery - How happy I am that it's over. Truth is though...I can't put on my strong girl panties... like I literally cannot. They're too uncomfortable. I've been living in hospital grade mesh undies. Those of you that have had children or your spouse has had a child - you know what beautiful pieces of undergarment I'm referring to. They're stretchy. They're airy. They're magnificent.

The undies are covering about 40 staples. They stapled me shut. I'm not sure why I find that so disturbing. They're up around my belly button down past my c-section scar almost to my hoo-hoo. Believe it or not, that's not even the part that hurts. I've been told maybe I'll feel better once the staples come out but I'm not sure it'll make a difference. The docs did a lot of work inside me. They moved some things. They removed some things. I got word today that the pathology reports show that they got negative margins around the cancer they removed. You know what that means?  I'm cancer free. I'm freaking cancer free.

Why am I not screaming it from the rooftop? And celebrating? And calling everyone I know? Because I have a hard time functioning as a human right now. Cancer free comes at a price. I barely get out of bed. 95% of my day is spent either being uncomfortable or in pain. I'm not telling you that to make you feel bad for me. But I thought I'd be as real as I can in this post. Why start sugar coating my feelings now?

After the surgery, I spent 2 days in IMCU and then the remainder of the week in a regular room at Roswell. Throughout my stay, they wanted me up and moving around. Which was fine but every time I got up, it was at least a ten minute process to organize all my tubes and things to where I could move around - and then the same when it was time for me to lay back down. I had a NG Tube that sucked the contents of my stomach out through my nose - that was a treat. I had a drain coming out of my abdomen. They emptied this multiple times a day. Every time they cleared the tubing it made the suction super strong and it full strength sucked out my insides. No sugar coating. That was a bitch. You can imagine what it felt like getting this drain pulled out. "Just a little pressure" the doc said. That was cute. After the surgery, they packed my hoo hoo with gauze. What goes in, must come out. It was like giving birth again when that came out. Good morning to you too, doc. I also had a catheter for 10 days. 'Nough said there. Then all of the IVs. Two in each arm and one in the artery in my neck. This part scared my kids. They barely came near me when they came to visit. Who blames them? Mommy has a giant device hanging out of her neck - that's not normal. I thought for sure that when they took it out I'd have blood squirting across the room like a horror flick. I didn't. It was ok. Phew.

One night I was up walking and I was feeling pretty good (thanks, meds). I kept passing the same nurse in the hallway. At one point he said, "you doing the mile?"  I laughed. He didn't. When I asked if he was serious, he said a mile was 33 laps around the floor. I was on lap 13. I could do 20 more. Challenge accepted. I did it. 33 laps. I only did that once though. Ouch.

For those of you that have birthed babies (my fancy panty - wearing friends), remember that first time you pooped after giving birth? Remember how scary that was? Multiply that by 100 and you'll kind of understand where I'm at - but on a daily basis. I'm about 2 weeks post surgery and going to the bathroom is so damn scary. I'm going to stop there and not go into anymore details. You're welcome.

I spend most of my day laying in bed. I usually will only sit up when I'm eating. It hurts to sit - even in bed. And I can only stand for so long. So laying down it is. I feel pathetic. I know I need to heal but shoooot this sucks. This really really sucks.

Because I'm spending so much time laying in bed and not moving, my back issues from radiation are returning. I did a lot of work last year to help my back feel "normal" again after it was destroyed by radiation. Physical therapy, massage therapy, personal training to build my strength - all of those were needed and all of them helped. But now I feel back at square one. So it's not just pain from the surgery, but my back is a mess on top of it. I'm eager to get back to physical therapy and everything else so that I can feel better again but I'm still waiting for the day I wake up really ready to get to work. This is unlike me. I'm a fighter. I normally push myself harder than I should. And I'm always up for a challenge.

Though I currently feel defeated, I know this hasn't beat me. I'm not down for good. I've just been knocked on my ass and it's taking me extra long to get my footing back. I mean....I'm cancer free. I beat this. Again. I'm 2 for 2, cancer. You shitbag. Bite me.

June 10, 2017

Day after surgery

Cheery little visitor

June 16th, 2017

My escape

My little buddy's last day of kindergarten.  I was so, so uncomfortable. Fighting to put a smile on my face. I was hiding my catheter in a bag behind him so it wasn't in the picture.  This is also the day I got that stupid thing removed. Thank goodness.

Bedside entertainment

My bodyguards

Summer Vacation

What I'll Do On My Summer Vacation
by Lesley Maloney

Remember that BFD surgery I was scheduled for?  It's tomorrow.  Thought I should let you know.  Big day. Big surgery.  Am I scared?  No. That's probably weird.  Honestly, it's been the most common question people have been asking.  I think I'm wired wrong.  I seem to be the only one not scared.  "If I were you, I'd be terrified" - yes, someone actually said that.  Thank you.  Oh and while we're on the subject of weird things to say to cancer patients...please don't tell me to cancel my surgery and just use essential oils instead.  That happened too.  I'm not kidding.  Thanks, but no thanks.

 I'm not scared to have this surgery, I'm annoyed.  I feel freaking great.  I've been working out and playing with my kids without being exhausted.  I've built up my alcohol tolerance again - It was pretty low there for a while.  This surgery will change my life and being in recovery this summer will start me out fresh...again.  And for that, I am annoyed.

You're going to read through this and say, "but Lesley, you never told us what the surgery is."  That's right.  There's a couple reasons for that.  The biggest is that the docs don't really know what they're going to do.  Weird, right?  Worst case scenario is pretty crazy and best case scenario is still serious, just less crazy.  They won't know exactly what they're dealing with until they cut me open.  Someday I'll share the details, but today is not that day. I'm mentally prepared for the worst case scenario.  I'm fine with it.  And I think that freaks people out.  But I'm not the kind of person that sits around feeling sorry for myself.  What a waste of time.  It's going to be tough to get through and I know that.  But, shoot, life is an adventure. This is the life I've been given and I'm going to live it the best and most fun way I can.  If you've been around me in the last few weeks, you know I've been joking about some pretty serious stuff.  I'm happy to be surrounded by people that can laugh with me.  Boy does that make things easier...and more fun.

What happened to that second opinion? A few weeks ago I got a call from my doc at Sloan Kettering.  She said she had good news and after reviewing everything I sent, there was a surgeon in NYC that thought he could do a less radical surgery than what Roswell wanted to do.  Cool!  I booked a flight that night for the following week.  The morning I was set to leave, I got notice that my flight was cancelled.  Awesome.  I'll skip the details, but I ended up renting a car and driving down to NYC by myself - just hours after my flight was cancelled.  Fortunately, my big brother was there for business so he met me and we want to my appointment at MSK together the following day.  Unfortunately after being examined by the doc, he ended up recommending the same surgery as Roswell.  That was a bit of a bummer, but I'd rather have surgery in my hometown anyway so it wasn't terrible news.  Plus this makes them 2 for 2 with agreeing with Roswell's plans for treatment.

Side note: For those of you that have negative things to say about Roswell...I'm going to repeat that...This was the SECOND time Sloan Kettering agreed with the treatment plan that Roswell suggested.  Let's add that to the list of things to keep to yourself: If you have negative things to say about the place that is working on saving my life...keep it quiet.  Thanks.  Yes, that makes me cranky.

Once I got back to Buffalo, I set up all may appointments at Roswell to prep for surgery.   Lots of appointments, paperwork, and question & answer sessions later and we're ready.

12 hours from now I'll be on the operating table.

If you know me, you know I don't like to ask for help or accept help.  That's super hard for me.  But I've promised to be better with that.  So this is a blanket thank you in advance.  Thanks to those that have offered to help with the kids, and make us food, and clean, and all the other things you do for sick people.  I've said it a million times that I have the best support system in the world.  I appreciate every little bit.  Thank you.

I promise to update when I can after the surgery.  Hopefully for entertainment sake it'll be when I'm all doped up.

The best part of all of this craziness?  When the surgery is over, there's a damn good chance I'll be cancer free.  And you know what that means?!?!?!  We PARTY!!!!  I mean...it'll be a bit before I'm fully recovered, but you can bet your bottom dollar that we'll celebrate!

Just because.

Photo cred: Ben Richey, Roswell Park

Second Opinion Trip Take II

My Livestrong Coaches that helped me get back to kicking butt!

Last day at work for a few months. Lucky to have super supportive coworkers who double as amazing friends!