Happy Friday! I am one-week post-surgery! Woo Hoo!! All seems to be progressing well. I just finished my first virtual post-op appointment and the plastic surgeon’s PA is happy with where I am. She reminded me that I have to take it easy for the next two weeks, I can’t lift anything over 5 pounds and while I can walk and engage with the world around me, I should not raise my heart rate. She assured me that I will feel loads better once these pesky drains are removed and tried convincing me that after the first month of healing is behind me, the swelling and tightness will begin to dissipate. I’m not completely convinced about that, but we shall see what happens.
Someone asked me “what does it feel like?” I finally came up with a good analogy this morning. Have you ever touched a pregnant woman’s belly days before she gives birth? Her skin feels hard and taut (as though it could not stretch one more centimeter) and internally she feels like she might explode at any second. THAT is how each breast feels. Adjusting to these twins is putting some additional pressure on my back and I am already looking forward to a day when I can get a massage to help relieve the growing knots in my shoulders and back.
As I lay awake in a sleepless fog last night, I contemplated what I wanted to focus today’s message on. I decided I wanted to share some of the resources that have helped me navigate the rough waters and prepare me for what my future had in store. I learned long ago that I am not the kind of person to travel any path completely alone. I rely on others for strength and guidance. Thankfully, we live in a time where you can find resources easily and some of the biggest educators and supporters come from people you may never meet.
One of the best things I did for myself was enlist the help of a therapist. I am thankful to have the UPMC Hillman Cancer Center resources as part of my network. And even though I was not diagnosed with cancer, I wanted to meet with someone familiar with the trials and tribulations associated with BRCA and preventative surgeries. If anything, good came out of Covid, it’s the fact that more health care providers are offering virtual appointments. The gentleman I see sits in his office in Pittsburgh and I get to sit comfortably on my bed with the dog beside me and share all my insecurities and fears. I have only had four or five sessions with the therapist, BUT what he helped me achieve is invaluable. He helped to center my thoughts, conquer the fear, and reminded me to take challenges one at a time. However, the most profound thing he said to me was during our appointment 2 days before surgery. ~ Let me back up a second ~ during our visit 2 weeks prior, he challenged me to eliminate the word “hope” from my vocabulary. This was like asking a cigarette smoker to eliminate their lighter. You see, I am a girl that is full of “hope”. Hope for good outcomes, hope that my son finds happiness, hope that I live a long and health life, hope that one day my husband isn’t pulled in a thousand directions, hope that after this recovery, we get a little down time to enjoy life without a crisis, hope that Covid goes away so we can all get back to living etc. I guess I must have said “I hope…..” one two many times to my doctor and he threw that challenge my way. ~ I accepted the challenge and spent the next couple of weeks trying to analyze the word and situation to which it was applied. I became hyper aware of the fact that I rely on this word and while I still love it, I try to focus on ways to bring my “hopes” to reality. When we met two days prior to surgery, we once again revisited “hope” and my addiction to the word. My therapist sees the word as a passive thought and one that people tend to rely on without always following through. Soooooooo…..he came up with the term “Cope NOT hope” and we worked through and acknowledged the fact that one can HOPE all they want, but in order to get to the dream, you must take some kind of action. This one term has helped to remind me that, even though the last 2.5 years has been rough, I have found a way to get over, around or through each obstacle that has gotten in my way.
I have done a shit ton of research over the last 15 months and believe that it has helped me to “cope” and prepare for the road I was traveling down. There is a great deal of knowledge and resources out there. I know it can be overwhelming to know where to turn your focus. I have personally spent countless hours reading books, navigating websites, following support groups on Facebook, asking questions to anyone I could that has walked a similar path etc. At this time, I would like to take this opportunity to share a few of the most influential resources I have encountered along the way. I “hope” that some of the resources below help someone cope with their own “Yellow BRCA Road!”
Facebook info: https://www.facebook.com/groups/1429192430721880
Here is a bit about Bright Pink. (Taken directly from their website)
Bright Pink helps to save lives from breast and ovarian cancer by empowering women to know their risk and manage their health proactively.
That all women can live their best, brightest lives no matter their circumstances.
We focus on health, not cancer, to inspire women to practice breast and ovarian cancer prevention. Our innovative programs, strategic initiatives and powerful partnerships directly reach women in their daily lives and healthcare providers in their daily practice.
Our Approach in Action
We take a two-pronged approach to breast and ovarian health education. By educating young women as well as their healthcare providers, we’re fostering a supportive healthcare relationship where informed women have proactive conversations with trusted providers on a regular basis. Our unique mix of digital (like our Assess Your Risk quiz) and in-person tactics drives exponential health behavior change.
https://www.facingourrisk.org/ (taken directly from their website)
Force improves the lives of the millions of individuals and families facing hereditary breast, ovarian, pancreatic, prostate, colorectal and endometrial cancers. Our community includes people with a BRCA, ATM, PALB2, CHEK2, PTEN or other inherited gene mutation and those diagnosed with Lynch syndrome. We accomplish this through our education, support, advocacy and research efforts.
We are dedicated to providing up-to-date, expert-reviewed information and resources that help people make informed medical decisions. Our strong, supportive community of peers and professionals ensures no one must face hereditary cancer alone. FORCE serves as a champion, unifying the community and advocating for awareness, access to care, and better treatment and prevention options.
Prophylactic Mastectomy https://www.facebook.com/groups/14270095346
Taken directly from the site:
The Prophylactic Mastectomy (PBM) online support group is a private/closed group for women 18 years or older ONLY!! We provide support for a community of women (ONLY) who are affected by hereditary cancer such as the BRCA 1&2, CHEK 2 as well as those who are gene negative with a strong family history of related risk factors. We support women who are survivors and those who currently have breast cancer. We are here to support, inspire and empower each other!!
BRCA preventative mastectomy + hysterectomy support group
Taken directly from the site:
Support for women with a family history of BRCA 1 or 2, who have undergone or are considering surgery to reduce their cancer risks.
Blessing Box Project
- Dawn Compton is an Angel on earth. She created this group to supply ladies undergoing a mastectomy with a Mastectomy Pillow, a shirt with drain pockets sewn in and other little items she collects. Close to 4400 boxes have been mailed to ladies just like us. What a wonderful gift to the human race Dawn and her group of helpers are.
Taken directly from the site:
A blessing box has a mastectomy pillow and a drain shirt in it. I sew them and gift to you. If you can send the postage back that helps me continue to send to other sisters. Some send postage – some send more for supplies- some can’t send any. I don’t keep track. Jesus always makes sure I have enough to go around.
Instagram Influencers and Bloggers:
- When I first started talking about my BRCA status, my brother told me about this Astrophysicist that he believed talked about BRCA on her Instagram account. I checked her out and can say with 100% certainty that she was the FIRST person to settle my nerves, lift my spirits and help me take my first steps down an uncertain path. I can never thank her enough for her honesty and insight. She is in the perfect profession, because she is a legit bright and shooting star all on her own.
- This gal is crazy and whimsical, and I love her spirit. She takes crazy photos and helps ladies learn to love their new look.
- This lovely lady is from England and seems to be the sweetest soul you could ever meet. She is passionate about sharing her own story and educating women.
- This gal shined a light at a time when I felt like I was in a dark spot. The pictures she took helped me to realize that recovery can be okay and that fake boobs don’t look that bad.
I am sure that I have left some groups, bloggers, books off the list, but since I don’t have any plans of ending my posts in the near future, I feel I have time to add to this list.
Please connect if you have ANY questions. I am happy to help anyone I can.
Thanks for tuning into today’s blog. As you race toward your own finish line, please take the time to consider how you can cope NOT hope your way to the best, happiest and most importantly, healthiest version of yourself.
Until next time.