Awareness Rising

9-28-2021

With summer officially ending, the month of September focused on raising awareness of Ovarian and other Hereditary Cancers, followed by October raising awareness for Breast Cancer, I have found myself in quite the reflective mood. 

I have pondered what my existence was like before finding out I carry the BRCA1 mutation (which was exactly 1 year, 7 months and 27 days ago), what life has been like since finding out and what interesting things lie ahead for me as I continue down this adventurous road. Before starting to write today, I took some time to read some of the blog posts I have written for this page.    I am normally quite hard on myself and am my own toughest critic, however, I am quite proud of my journey thus far.   I cannot believe so much has happened in less than 2 years!

For those of you reading my blog who are going through a similar experience, I want to share some enlightening discoveries I have recently made.

• As I was making my way through the beginning of recovery, I told myself “I was never going to be the same.”  Yet, as soon as I felt well enough to return to the daily routine of life, I fell quickly into hiding my discomfort and trying my best to be the “old me.”  Part of me is completely okay with this approach, but there is another part of me that is struggling with it.
• I am NOT the same person I used to be
  • The hysterectomy/bi-lateral oophorectomy has robbed me of hormones that I once relied on.  Sure, not having periods is delightful, but the lack of periods, also takes the desire for intimacy.  Some say this comes back.  ~ It will be a joyous return if/when it does.
  •  The hormonal spikes which once made me cry at the drop of a hat seemed to have been filed down to hormonal nubs.  Now it takes a major emotional surge to open the flood gates.  
    • I am actually a fan of crying….I feel like it cleanses the soul….so not crying often actually makes me kind of sad….hell, maybe I will cry later over my lack of crying. 😉
  • If you didn’t KNOW I had my boobs removed and replaced, you would probably never know! However, I continue to be reminded everyday of their falseness.  Here is a firsthand account of some of the things I contend with.
    • They remain heavy and awkward feeling.  Even though I am almost 6 months into recovery, they still feel foreign.
    • They never look the same two days in a row. 
      • Since all my own tissue has been removed, there is nothing to fill in the rolls and ripples you see when the silicone orbs settle and shift. 
        • I am electing to have fat grafting surgery in November.  Apparently, I am meant to spend my holidays recovering.
          • My first surgery was just before Christmas last year.
          • Second one was 2 days before Easter.
          • Number three is scheduled for the day before Thanksgiving. ~ Hopefully, this will be the last!
    • Nothing fits like it used to and I have yet to find a comfortable bra (I have tried many)
    • Speaking of bras…..I know I am weird on this one, BUT….I personally wish I had not sparred the nipples.
      • I never wanted to wear a bra again and yet, I find myself wearing one now more than ever.
        • Part of this is probably me being temporarily more self-conscience.
        • The other part is….these things have a mind of their own.  I have zero feeling in the front of my chest, so I have no way of knowing when they are at attention, and they are NOT in sync with one another! 
    • Even though I can sleep on my side and stomach, it remains challenging to find a comfortable position. 
    • Swimming is interesting.  I can’t find the exact words to describe it.  It’s not more challenging or easier, it’s just a totally different experience. 
    • By the time I have put in a full day of all the things life has to offer, I am T.I.R.E.D.  More so than I can ever remember being.  Maybe boobs are the storage for a hidden internal battery and my original boobs must have had a longer battery life than these new ones, because I simply run out of juice earlier and cannot wait to crawl into my bed (even though hot flashes consume me, and sleep often eludes me.) 
  • Anxiety still has a recurring role in my life and being BRCA positive is not only about breast and ovarian cancers.  As much as I try to push them aside, moments like these creep in…..
    • A new dry skin patch appears, or a mole looks slightly different causing me to think “is this melanoma”
    • I am “gassier” than I normal…”is that colon cancer kicking in”
    • I have developed consistent and more intense pains in my hands (thumbs, thumb pads and finger joints) ….”is that the elusive and hard to diagnose “Breast Implant Illness”…..is that REALLY a thing?  Have my doctors heard of this or treated anyone with it?
  • Thankfully, my anxiety isn’t so bad that I can’t push these thoughts away (for the most part).  I wanted to include them here for anyone going through the process to remind you…..you are not alone. 

I haven’t mentioned the above things to sound gloom and doom.  I simply want to share the good, bad, and ugly of this journey.  While somethings aren’t great, many things are.

• Here are some of those good things:
  • I care way less what people think of me. 
    • I don’t think I would have been able to share this blog if I cared as much as I used to.
  • I am more in-tune with my body than ever before. 
  • Less hormones means less intense highs and lows.
  • No more mammograms!
  • The heavy weight and constant worry of breast or ovarian cancer developing is lifted!!!
    • If I even dip my toe into the Lake of Second Guesses, I quickly remind myself of this, pull my toe outta the water, dry it off and move on!
  • I have made some lovely friendships throughout this trek. 
  • Some personal celebrations are on the horizon
    • Tallulah’s Diner Book Two is AT THE PRINTERS!!!
      • Recovery provided me with time at home to work on the things I needed to buckle down and do to get the book to print.  I am SO EXCITED to share it will you all SOON!!!
    • I have some other interesting logs in the fire but need to save those for another post. 
  • Since 2 outta 3 surgeries are behind me and the next one isn’t until the end of November, I am thrilled to report, Jim and I are back in the groove of attending Eric Church concerts!!!  Between Covid and recovering, I wasn’t sure we’d make it, but we have one down and 2 more to go within the next 2.5 weeks. 
    • While I LOVE each and every concert, I am particularly excited for the October 15^th show.  It will be at this venue that I will be able to put my arms around 2 of the 3 ladies I mentioned in my October 2020 post.  One of these ladies has beat breast cancer and the other is still fighting.  They have both been part of my support system and true inspirations to me.  I can NOT wait to stand with them, hand in hand….toss all cancer talk out the window and lose ourselves in the music that brought us together!!!

Before I end for the day, I want to take this time to mention ~ not only is September Ovarian Cancer Awareness Month, but this week is National Hereditary Cancer Week with a special “Previvor Day” being celebrated on September 29th.   There are some amazing organizations out there that continually stay focused on awareness, education, treatment options and strong support systems for individuals who are either battling a cancer diagnosis, are high risk for developing a variety of cancers, are healthcare providers, caregivers an individual’s support system, or are survivors or previvors.

As a “Previvor”, I am grateful to many organizations for providing me with a plethora of information, guidance, suggestions, and support groups.  I know I have mentioned them in previous posts, but here they are again.   They have all provided me with resources and direction in one way or another and I will be forever grateful their resources were easy to find. 

• https://www.23andme.com/
• https://brightpink.org/
• https://www.facingourrisk.org/

It makes my heart happy knowing each year brings more knowledge, education, and awareness to not only breast and ovarian cancers, but for other hereditary cancers as well.  However, I want to share this statistic I pulled from the FORCE website  

“As many as 90% of the millions of people who have a genetic mutation that causes or predisposes them to cancer are unaware of their risk. Spreading awareness will save lives.”

I find this statistic staggering and am asking you to please join me in the plight of spreading awareness!!! 

I have picked 3 songs for today.   If you have been following along, I imagine you have noticed how important music is to me.  When words fail, music speaks.   It has a magical way of bringing me comfort when I am feeling low, empowering me when I’d rather be complacent and motivating me when I want to be lazy.  I hope you find a positive and encouraging message in one (or all of these songs.)

Fight Like a Girl by: Bomshel – A gal from one of the support groups I follow shared this one with me. It’s a good one and to those currently fighting…..keep on Fighting Like a Girl! XOXO

Stand Up by: Sugarland – This is another one of those songs I have turned to for a variety of reasons over the years. When I worked at Paul Mitchell the School Cincinnati, I used this one to encourage the Future Professionals to use their voices and take a stand on matters important to them. I still feel the passion in this song and encourage you to Stand Up…whether it’s to raise awareness for Ovarian Cancer, Breast Cancer, Autism, Child Hunger….whatever is important to you!!!

Never Break Heart by: Eric Church – ahhhhh…..This guy! This band! These fans!!! This song! These lyrics!!! From the beginning of this song to the end, I am hooked! Here is just a peak at the lyrics…..

“Don’t let fear steal your brave heart. Don’t let doubt take your faith heart. It’s okay to cry, but don’t never break heart!”

As always, THANK YOU for taking time out of your busy life to read what I have to say!  I appreciate it more than my words can ever convey.

Until the next time, take care of yourself and those you love!

Peace,

Gina