Purple and Previving: breast cancer support group

Showing posts with label breast cancer support group. Show all posts

Sunday, July 10, 2022

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

Thursday, March 24, 2022

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