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

My first previvorversary!

 I've lost so much, but I've gained more...

On July 2, 2020 I lost my breasts, what I felt like was a huge part of my womanhood, feeling on my entire torso, and relationships, time, and so much energy. After getting me through my surgeries, I lost my companion, Joshua, on May 18, 2021. What I gained, though, is infinite and priceless. I gained the confidence to wear my flaws proudly; I earned them after  all. I gained the self-love to set boundaries; boundaries with people, situations, my job, and myself. And overall, I gained a new perspective on life that leaves me feeling refreshed. 

If you're new here, I'll provide the skinny on me..

I created this blog because when I first started planning for my preventive double mastectomy, I remember trying to mentally, emotionally, and physically prepare and feeling SO lost and overwhelmed. Even my surgeon to this day can't comprehend how difficult this journey is for her patients.

My mom was diagnosed with breast cancer when I was 7 years old and she was 32. She survived! And then, we learned in my early adulthood that she, my sister, and I all carry the BRCA1 mutation. So, it was my care plan to become a previvor before turning 30. I basically made it. In October, 2019, I got word that I could have the surgery and found a surgeon that I felt was worth gambling on. On July 2, 2020 I had a preventive double mastectomy (6+ hour surgery). On July 21, I had DIEP reconstruction (17.5 hour surgery) followed by a 5-day ICU stay, and then on December 9, 2020, I had my tubes removed and revisions done up top (5 hour surgery). I forgot to mention above that I also lost my memory and much of my hair :) It was HARD. Mentally and physically preparing my life and my home, in the middle of a pandemic no less, was HARD. I'd done a lot of difficult things in life and made very challenging decisions but this one took the cake. Now that I've made it to the DIEP side, though, I wouldn't change a thing. 

It was a solid 12 weeks before I felt like myself after DIEP. It was a solid 5 months before I could wear jeans and I felt comfortable tying my shoes again. And at the year mark, I tried doing crunches today and am still struggling. I SO wish I'd had physical therapy! I let my surgeon make me feel like an idiot for wanting it. 

On that note, I knew my lifestyle would be different post-DIEP. You know that saying, 'you are what you eat?' It couldn't be more true. I only put whole things in and in turn, gone are the days I feel sluggish, bloated, etc. I exercise daily (that isn't new) and really prioritize my own wellness. 

After spending a year as a patient, I decided to jump out of the 'healthcare' boat and into a different world. I am now officially working in the fight against cancer. As a previvor, I feel incredibly humbled and honored to serve in this way. Will you help us fight? Donate online. 

Check it out! Be sure to find my helpful links post. Over the course of the next few months, I hope to have everything better organized now that the dust has settled but in the meantime, please bare with me :)

New Chapters

 Hey! 

Welcome to all the newbies! It seems like there are too many of you :( but I'm so glad we're all here, together. I am almost a full previvor and will wait 5-10 years before finishing. This last year, I had preventive nipple/skin sparing bilateral mastectomies with expanders for 2.5 weeks before DIEP on July 21, 2020. I spent 5 nights in the ICU and went home on a Sunday after my surgery. Overall, I've done really well and have no regrets. I do wish I'd had done it much sooner, though! 

So, as of today, I'm very active. I took advantage of the snow and enjoyed sledding for the first time ever! Phew - those hills! I shoveled snow all winter long. And now I'm walking 5-6 miles a day and my pet-sitting business is on fire. :)

I still focus on eating a high protein/high fiber diet. I try to stay away from carbs and sugars as much as possible. I feel and look great and I'm ready to have some fun in the sun this year! I am planning a big garden/yard overhaul project this spring. 

I wanted to bring all the important stuff here in case I'm not back for a bit. 

I made a list for everything. This google sheet has a to-do list of everything I did to prepare, a timeline of all my to-do's, a link to my amazon wishlist. All prep stuff. 

Be sure to connect with The Blessing Box Project for your mastectomy pillow.

Feel free to email me at kaitlynLkeen@gmail.com with any questions!! Much love to you. 

Leaving it all (or most) in 2020!

 The tatas, the tubes, and my chubby belly all got left in 2020. I had phase 2 and tubes removed on Wednesday, December 9th. Surgery was about six hours long and I did well. Love my results! I had lipo done from my belly/flanks to fill up top. Hoping it absorbs but not sure it will..? She removed my paddles (the flaps) and removed my dog ears. I stayed in bed for 4 days to manage pain and by day 5, I was feeling much better. Lipo hurts! And I don't bruise so I have no bruising to show off. In the pic below, I'm wearing a Large bralette from Target.

Here's a photo of my daughter and I spent Christmas Eve cruising around town, looking at lights and drinking hot coco. I went in my PJ's :) 

Who's ready for 2021?! CHEERS!