2-year previvorsery

Me, starting to look like a functioning almost-32-year-old again....

Greetings! This is my celebratory 2-year post preventive double mastectomy with DIEP reconstruction and bilateral salpingectomy dance (video doesn't want to upload so here is a screenshot with a link)! 

On July 2, 2020, I underwent preventive double mastectomies and on July 21, 2020, I was under for 17.5 hours for DIEP flap reconstruction. On December 9, 2020, we spared my ovaries at the last second and decided on a double salpingectomy and finished reconstruction.

All the time, sadly, I'm learning of and meeting new people who are on the same journey. During my preparation for surgeries, starting the blog was one way to help keep myself organized with notes in one place and offer support to others along the way. Since, it has served as a timeline because my memory was almost worthless for ... well... it's starting to get a little better ... maybe =)

But, my hair is coming back finally! After surgeries, I was losing so much hair that I eventually cut it short. I just started strength training 2 weeks ago and am feeling great! I love seeing progress and watching this body bounce back after being split nearly in half. And I've been eating well for the most part. I still drink entirely too much beer and am working on that but overall feel great. I follow a mostly gluten free diet which keeps swelly belly at bay (worth it!). 

Living beyond this experience has been a blessing, of course. It's also been challenging in ways I never imagined possible. I always look for the silver linings and there are plenty - I've taken this opportunity to get a hold on my health and at an early age. I'm reevaluating all my cosmetic and personal products from shampoo & conditioner to makeup to feminine products. It's really eye-opening when you pay attention to the ingredient lists on our products. And since I've already been through enough, I've decided I'm worth more than I initially thought. I am striving to be more intentional in my relationships, in my work, and in my spending habits. 

Be sure to check out my helpful links, recovery posts, and pictures. 

- kk

Ovarian cancer doesn't have to be a silent killer...

Did you know..

Ovarian cancer affects 1 in 78 women and about 1 in 108 women die of ovarian cancer. It doesn't have to be that way, though! If you've followed my journey, you know I'm a previvor and I chose to take preventive measures to reduce my risk of developing cancer. I had my tubes removed and per my providers' recommendations, we felt that step would significantly reduce my risk of developing ovarian cancer early (until I later remove my ovaries) because ovarian cancer often starts in the tubes. 

The Hope Light Foundation has started the Talking Ovarian Cancer Project to bring awareness to ovarian cancer and the best ways to prevent it and detect it early. 

Living beyond...

It's March 24, 2022. 2 years ago, I had just received my first surgery date (it would later change but the feelings never did). I ended up with a preventive skin and nippple-sparing double mastectomy on July 2 (6 hours), DIEP Reconstruction (17.5 hours!) on July 21, and a double salpingectomy and phase 2 reconstruction (6 hours) on December 9. 

While I can't believe it's been almost 2 years, I've come so far since then! I remember it being an extremely dark place - after all, I was losing so much of my womanhood. Not only that, I (like, all on my own..) had to choose WHEN to do it, decide which method was best for HOW to have it done, and GOD FORBID, WHO was I going to trust with this work?! 

After trying to navigate the complexities of our healthcare system as a healthcare worker for 13 years, as an educated and privileged young white woman, and as a population health scientist, I decided I needed to officially join the fight against cancer. So many women (and others) try to navigate this very complex system and are failed - it costs them their lives or years off their life when they are failed. The disparities are stark.   This morning, I received an email from Living Beyond Breast Cancer and it got me thinking what living beyond this experience has been like. I hope I never know what it's like to live beyond breast cancer because I hope all that I've been through is enough to prevent it (and ovarian cancer and colon cancer and all the other cancers my BRCA1 mutation puts me at risk for). But so many women still do not have that opportunity and that's why I'm in the fight against cancer. 

 Living beyond, for me, has been energizing. I have a completely new frame of mind and one that I'm grateful for. Those that stuck with me through it all are the people I plan to keep in my circle. All the pain I endured for being cut 18 inches wide open without narcotics taught me I'm a superhero without a cape and I didn't even know it. And being completely isolated for 9 months in an attempt to guarantee a negative COVID shot for 3 surgeries in 6 months taught me to slow down and enjoy the simple things in life (stop and smell the flowers, eh). My hair is coming back! Different colors, but whatever. And our family has grown by 4 pitty paws!

Some things are less rosy - image, emotions, sex, intimacy, and trauma (breast cancer or preventive surgery?)....

Check out this new video series for those of us living beyond.... "Living Beyond Breast Cancer is excited to share our new sexual health video series, featuring young women impacted by early stage and metastatic breast cancer. Below is additional information about these new resources. 

Living beyond breast cancer: Sex, Intimacy, and Breast Cancer. 

 The emotional and physical effects of a breast cancer diagnosis and its treatments can impact your sex life. Surgery, chemotherapy, and hormonal therapy can leave you with a changed body image, lower libido, vaginal dryness, and more. And feeling sad, anxious, or stressed can make it hard to want or enjoy the intimate activities you loved before cancer. Living Beyond Breast Cancer’s sex, intimacy, and breast cancer videos offer candid insights from women like you about dating, body image, libido, intimate relationships, communication with health care providers, remedies, and more."

* Clothing and other post-mastectomy and cancer resources - Global

Happy 2022!

 Happy New Year! Same story, different year, LOL. Since I last wrote, we've been kicking butt in the fight against cancer. The Cancer Control team I serve on achieved goal at 110% on all outcomes which is due to tremendous leadership, the most amazing people ever on staff, and our incredible partners which fund our work. Consider visiting www.cancer.org/donate if you haven't recently! 

I am super proud of my work and if you'd like to see what we're doing in the fight against cancer on the ground, check out my latest partnership report here. 

We are also kicking Winter, 2022 off with the opportunity to spread joy by purchasing books for our local kiddos impacted by cancer. Will you consider purchasing Usborne books or donating to the fund so we can have the largest impact possible?! 

Usborne Books & More is matching all donations & sales by 50%! You can shop for yourself and rewards will go to the American Cancer Society at https://d8542.myubam.com/2322397 You can donate to the Book Drive via Venmo or Paypal! Venmo: @chellesbookshop Paypal: https://www.paypal.com/donate?hosted_button_id=5LNDH5WRTAXYQ
Our goal is to raise $3,000 in either sales/donations! That will be $4,500 worth of books donated! Please help spread the word! 
We are taking donations until January 24th. 

I started my new ink! On December 7, I had my sunflower done. The second piece of this one will cover my old tat that was sliced in half during DIEP on my hip. Looking forward to having closure to all of this <3

Sending love!

#GivingTuesday

 Have you considered who you'll be supporting this #GivingTuesday?

I'll help you! Please consider supporting the American Cancer Society this #GivingTuesday

I'll be happy to give you a few reasons why this is the best value for your dollar!

Statistically speaking, 1 in 3 of us will get cancer so if it's not you that gets the awful diagnosis, likely you'll be caring for someone that does. Why not fund the work that's being done to eliminate cancer right here in our community? In Illinois alone, there are 20 active research grants totaling 13,476,200!

Besides research, we are increasing cancer screening rates, increasing HPV vaccine uptake (HPV causes ~36,000 cancers each year in the US), forming the Illinois Lung Cancer Roundtable, and forming a local transportation consortium in central, IL. 

Additionally, the American Cancer Society recently awarded $30,000 in transportation funding to local health systems in central, IL to address transportation barriers associated with missed treatment. 

Donate here: https://donate3.cancer.org/

Scars, Mars...It's My Warrior Wear!

 

"So, I guess I'll just strip right here..." as I stood in front of a mirror I asked the photographer to bring, in my typical 'I'm a girly girl but not..' fashion. I don't have a portable mirror, hadn't had the time to try on and figure out my outfits, and curled my hair for it to be flattened the moment I walked outside. But we were rollin' with it. I think Zach awkwardly replied with a mumble and walked the other direction. 

We lose a lot through this journey. I lost a ton of hair, I lost my breasts, I lost my short-term memory, the ability to sleep in the sleeping position I'd slept in for decades, I lost my tubes, a giant portion of my womanhood, and so much more. Modesty? Yea, you can bet my fluffy ass any modesty leftover from childbirth is dead and gone. 

I've written about it before, but we gain a lot through this journey too. I've gained a support group and friends and relationships that mean so much more than any of those I lost by going this route. I was a feminist before but holy hell, if this didn't give me a new profound respect for the WOMAN species as a whole, there's nothing else that could. There aren't even enough or strong enough words to describe how much these warriors face, come out on top, and still smash at life while walking the path. Regardless of the outcome, these woman are a force to be reckoned with. And therefore, I realize now that I am one of them! I am finding an entirely new version of self-love and am 100% unapologetic about how that may impact others. I love it. It's beautiful. You should try it too! PS, you don't even need a reason to - just do it!

So why did I want to do these photos? From a tangible perspective, I have that hideous, half-gone tattoo that I have a vision for. But I wanted photos of my scarring beforehand. From a non-tangible perspective, I hope they are a constant reminder for decades to come to myself and all those that read this that our scars, our wrinkles, our dimples, our gaps, our sags, our discolored, our whatevers are all of our imperfections that create our beauty.

"I am strong, I am beautiful, I am intelligent, I am kind. And I won't let anyone tell me differently." My daughter and I have said this together nightly since the day she was born and I share this as my gift to you!

*****

PHOTO CREDIT! Let's talk about how HOT these photos are! Zach Adams with 1221 Photography really knocked this boudoir session out of the park. While modesty is nil, posing in string things for a stranger is not something I was super comfortable with doing either. Zach handled my vulnerability beautifully! He captured all I wanted to capture. And he couldn't have been more respectful. 

I can hardly wait to get my new ink and have session 2 done. 

Comment below to show some love! Which are your favorites?!

It's Breast Cancer Awareness Month!

Chances are, if you're reading my latest blog post, it's not you that needs increased awareness (and for that I'm sorry :( but I'm glad you're here). I hope I'm wrong - I hope I have many guest faces here!

October is breast cancer awareness month! For obvious reasons, this one hits close to home for me. I am summarizing below some really important stuff for anyone who loves a woman to participate in and share. The American Cancer Society is full of the most amazing resources for prevention, awareness, screening, and treatment resources. 

Did you know, American Cancer Society has a free, virtual support program for breast cancer patients and survivors? It's called Reach to Recovery - learn more here.

All month long, I am raising money for breast cancer research. Will you join in this fight? Donate, share, however you can help. <3 

Schedule your mammogram today or encourage a friend to! And ask them to keep passing the message forward.