Hot Mess Express

4-22-2021

Well, hell.  Here we are one day shy of the three week point and today I am….. a Hot Mess, Spicy Disaster, Blazing Mayhem, Scorching Chaos, Sizzling Disarray, Peppery Shambles, Stormy Jumble, Intense Wreck……more simply, today I am a heap of extreme emotions. 

The only way to get over a mountain is to take it one step at a time.  I think I have been putting so much energy into tackling each day, that I haven’t looked behind me to see how far I have come.  Today, I peeked over my shoulder and realized I am at the hill’s peak.  I DID IT!  I made it!!  It has not been easy, but with the help and support of so many amazing people in my life, I found strength within and have reached the topped.  This realization has me feeling all the feels and I want to take a few minutes to reflect and share some of the ups and downs of the last 3 weeks. 

The Ups:

• I have made it to the three-week point!  That is a victory in and of itself!
• My surgeons and their teams are all ROCKSTARS in my eyes.
  • I ended up taking their advice and opted for the Nipple Sparing Double Mastectomy.  Their expertise has left me with a U-shaped scar under each breast.  Once I am healed, the scars will probably not even be noticeable. 
• The drains were removed on day 10!  Sweet Jesus, that was an AMAZING feeling!!!
• The Pathology Report came back BENIGN!!!  THIS is probably the BEST “Up” of them all. 
  • I want to mention here though that the report showed Atypical ductal hyperplasia (ADH) ~ which is a marker for women who may have a risk factor for developing breast cancer in the future.
    • It is one more thing that tells me, the right breast was cooking up something and chances are high it was a matter of time before cancer took hold. 
• I have the BEST support system on planet earth!
  • The cards, the meals, the visits, the texts, the direct messages, the phone messages, the phone calls, the surprise packages!  Each and every single one has found a special and ever lasting place in my heart. 
    • I think it is worth noting here, that it’s the cards that tripped my emotional switch today.  I ended up opening one that had been placed in a basket to open randomly throughout the healing process.  That ONE card stopped me in my tracks, forced me to sit down and helped me to realize how far I have come these last 15 months.  After opening that card, I gathered all the cards I had throughout the house, sat down, and read them all again! 
      • If you are going through a hard time and are receiving messages of support.  Please consider saving those messages and revisiting them when you start to feel a little better.  When you are struggling to get through the day, words from a loved one may put a smile on your face, but the pain may trump the reaction.  Revisiting the sentiment when you feel a little better can rekindle the emotion and the love can be felt on an entirely new level. 

• The swelling is starting to go down and I feel a little better every day.
• Jedidiah is now allowed to sit with me on the bed and couch without supervision.  This is great for both of us.  There is nothing like the love from a furry companion to ease the stress of any day. 

• I can shave my legs, wash my hair, and put my own underwear on!  These are some of the achievements I am most proud of!
• After three surgeries in less than 19 months, my husband has upped his cooking game and dinners are now more than cereal or graham crackers with peanut butter dipped in milk.
  • His skills are so good now, that moving forward, I may expect dinner from him at least once a week!
• Last night I was able to sleep on my side!!!
  • I still need lots of pillows to be comfortable but sleeping several hours in my favored position was tremendous. 
• I have managed the pain with a rotation of Ibuprofen and Tylenol.  The only medication added to the fold has been Gabapentin to help with the nerve pain.   
• I have had and maintain good range of motion in my arms since day one.
  • Thank goodness for a successful shoulder surgery in September 2019, wonderful physical therapists that aided in recovery and continually using my TRX several times a week up until I had the surgery. 
    • IF a mastectomy is in your future, you may want to consider prepping your arms, back and core for this adventure.  The stronger you are, the happier you will be as you heal. 
• I have not worn a bra since the drains were removed!!!
  • Partly because the bras I ordered are too tight, but whatever.  My doctor said if it wasn’t comfortable, I didn’t need to wear one.  THAT was music to my ears.
    • I do wear a cami, which helps keep things where they need to be.

Some of these achievements may seem small or trivial to some, but to me they are monumental. 

Now for the

Downs:

• This entire process has been H.A.R.D. 
  • From finding out about my BRCA1 status to each and every step taken to reach the top.
• I may have been able to manage without narcotics, but this part of the journey has been and continues to be painful.
  • I thought I had prepared myself for the pain, but my mental preparation and the reality are a bit off kilter. 
    • I may put a smile on my face and when people visit, they tell me I look “great,” but please know, I have not been truly comfortable for one second since the surgery.
      • I have moments and sometimes they last for a chunk of time, where I am not in acknowledgeable discomfort, but a twitch of the arm or a shift of the hip quickly remind me that my upper torso has experienced significant trauma. 
    • Showering is just now starting to be soothing again.
      • The very first shower was probably the worst moment I have had the entire time I have been home.  For some reason, all the pain and vulnerability hit like a Mac truck and I found myself coiling from the water and pulling away from my husband of close to 28 years. My mind brought me to the scenes of the movie Silkwood with Meryl Streep.  If you ever saw the movie, you may remember these emotional scenes.   That shower is not a memory I really want to ever revisit, but I wanted to share it because it helps to paint a picture of the reality of this experience.  At times it is harsh, painful, and undignified. 
  • Even though I don’t have any feeling in the center of the breasts, I have feeling all along the perimeter of each. 
    • The pain feels like a sunburn that gets minimal relief from medications and is constantly present. 
    • Weird stabbing sensations happen randomly without warning and the location of each stab in a constant surprise. 
      • I know that is nerves starting to spark back to life, but damn, those sparks are intense.  Like lightning striking you from the inside without the rain or storm clouds to prepare you or warn you to take cover. 
    • At times, pain has and continues to radiate out from my breasts to under the arm pits and up to my collar bone. 
    • One of the most uncomfortable parts of this recovery has been a never-ending pain in my back.  This makes resting on any surface (even the soft fluffy pillows) extremely distressing. 
      • After complaining to every doctor I have talked to about this weird and unusual symptom, one PA thought it could be a side effect from one of the nerve blocks that I was given.  This makes total sense since it is in the spot where one of the needles was inserted. 
        • I have upped my dose of Gabapentin and am hopeful that this pain will dissipate soon. 
    • Muscle spasms are part of the process.
      • They don’t happen super often, but several times a day (especially when I am active), the muscles like to squeeze themselves, as if they are mini Boa Constrictors under my skin trying to suffocate the silicone orbs that have taken up permanent residence in their space.
    • These have been the LONGEST three weeks of my life.
      • Every day seems like a week.
    • When I get up and walk or look at myself in the mirror, I feel like an imposter.  As though, some other woman with big boobs has slipped inside my body while I was unaware and now inhabits my insides. 
      • I feel “fake” and wonder how long it is going to take until
        • I am not fully aware of the foreign objects in my chest.
        • I am not self-conscious over what others think.
        • I feel comfortable in my (newly stretched) skin.
        • I go a significant amount of time without pain reminding me of everything I have been through.

And now, the Ibuprofen is wearing off and the Boa constrictor on my left side is telling me I have typed enough for today. I am going to ignore it for a few minutes so I can finish.  Sooooo….I want to leave you with this…

THANK YOU for being with me as I climbed to the top of this BRCA Mountain.  Blogging has provided me with more comfort and drive than I could have ever imagined.  I am grateful to have an outlet to turn to and will continue to hope that by sharing my story, I can in some small way help others navigate through their own challenging path. 

I plan on starting my descent down the mountain tomorrow.  However, tonight, I am going to take some time and enjoy this view from the top. 

Here are a couple of things I am going to reflect on while I’m up here. 

And for today’s songs…..

As always, THANK YOU for sticking with me. Please let me know if you or someone you know has any BRCA related questions. I am happy to help anyone I can.

One more thing before I go…..When was the last time you climbed a mountain? What did you see on the top and who’d you share the view with?

Peace,

Gina