Sunday, October 28, 2018

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.

Monday, July 2, 2018

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.

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:

The crew at the Celebration of Hope

Cheering for the torch lighting

Sparkle shoes for a special occasion

Wednesday, February 28, 2018

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 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 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!