Netflix and Pills-My Mastectomy Journey

I thought I would have journaled during my mastectomy journey, but instead I watched like four Netflix series!  This was by far the most exhausting experiences of my life and writing for me can be the same!  Many times I have to reflect, in order to write.

So, why was it so exhausting and what can I tell you?  It was more exhausting than giving birth, because there was no bounce back, no recovery momentum, no real prize waiting and needing me.  No fancy baby clothes to play with, just extra large pajamas and dirty hair.  No perfect angel to watch nurse, but instead the nursing of imperfect boobs with drains, old surgical markings, and new scars.

It was more exhausting than running the half marathon, because during a marathon both your mind and body stay strong.  During a mastectomy, your mind may be strong at times and then it fails you.  Other times your physically seeing improvements, then you decline the very next day.  Very rarely did both my mind and body feel strong during this process and the finish line has been unpredictable.

This is probably the first experience that’s been so inconsistent.  I really thought that it would be like other operations  and I would continue to improve weekly, but that just hasn’t been the case with this type of surgery.  Each week has been new experiences (new pains or new nerves waking up) and from what I have learned it can take up to a year to feel no pain and your new normal.

Tonight, I’m on week 12 and in severe pain.  I have tears rolling down as I type because I’m just tired.  I’m tired of hurting.  I’m tired of missing things (tonight is our local volleyball playoff game) and I’m tired of not improving.  I would just give anything to not hurt anymore and not be a nuisance to my family and friends.  We are all ready to move on!  I’m tired being tired and I know they are, as well! I am tired of telling anyone that I am hurting!

So, you are wondering  “Wow, what would she have written, if she had written during the last 12 weeks, when she was going through the even rougher stuff?” ….. if, you haven’t already closed this blog entry  by now….

HA!

I’m sorry for my negativity.  I will try and lighten up.  The many positives of my journey are on they way…..I’ll tell you all some of my 12 week journey:

My surgery was about 10 hours long.  I said goodbye around 7:45 am,  just after a phone prayer with my pastor and just before my cocktail (as the anesthesiologist called it).  It was big cocktail and it was a big prayer!  When I awoke, I didn’t think much about my boobs new birthday and the fact they were born from my belly fat.  I was  pretty confused with the clock on the wall reading almost 9:00.  It seemed to me that the surgery must not have gone as planned and it was 9:00 am instead of 9:00 pm.

I remember immediately going into panic over my arm.  I couldn’t feel my right arm.  I was extremely groggy and began to cry thinking that I never bargained for losing my arm.  I had bargained for a lot, but not that!  I really thought something had happened, but the position of my arm had laid for so long that the result was that pain.  When the nurse left the room I said to my tired family audience, in my comedic fashion, “They won’t tell you the truth, but they dropped me in the O.R . and now my arm is all messed up!”

My surgery was a skin and nipple sparing double mastectomy with immediate reconstruction.  For people that don’t understand, and people who are glancing (I see you) and expect that I am completely flat chested now… you are wrong.  A mastectomy means you are removing all of the breast tissue.  Many people do decide to go flat and not reconstruct with implants or their own tissue.  But, I found a different surgery for me.

Skin and nipple sparing means that they save your skin and nipples.  I had one surgeon for this part.  Her job was important to save the skin and save the nipples and save the nerves!  She is also the doctor that sends all of your breast tissue off to test for cancer.

The second part of my surgery was microsurgery and is called DIEP flap (Deep Inferior Epigastric Perforator artery which runs through the abdomen).  In DIEP flap, fat, skin and blood vessels are cut from the wall of the lower belly and moved up to your chest to rebuild your breasts. My second surgeon reattached blood vessels from my flap to the blood vessels in my chest using microsurgery.

The first day in the hospital, the nurses would constantly check with what seemed like a sonogram doppler, my two flap blood vessels every 15 mins. The next day went to 30 mins, then every hour, and so forth.  They would search until we heard the heart beat.  It was like hearing your child’s heartbeat.  It was an important part of this process and the first few days were more important than I even realized at the time, because so many people go back to surgery during this process.  It was constant, but fascinating. With each move…stretch of an arm or kick of a leg.. the pain came billowing over my chest wall and big, swollen, fluid filled, tight tummy.   I would swing a leg over and pull up with my core muscles not using my arms or hands in anyway to get out of bed, with the assistants of about four people.  This was on like day five..  I really don’t know how my stitches across my stomach didn’t  pop!

There were some very funny moments throughout this recovery, especially the first week.  Ants crawling down walls during my drug induced hallucination.  Water falling down over me, as I sat naked on a shower chair and was bathed by both my mother and husband.  Yes, you read it right! I never dreamed in a million years I could find humor from that but what else could I make of such a profound, awkward, beautiful moment (insert emoji with woman covering her face).

I laughed so hard to myself one day, when everyone had left the Houston hotel, and Dustin had the chore of getting me ready alone. He had to clear my six drains and write it down, give me my medicine, and then wanted to shower me.  He sat me on the stool and sprayed me, washed my hair, dried my hair, put it up in a pony tail.  He helped me get my new pajamas on and all of that took him close to two hours.  He was literally sweating.

He sat me down in the recliner and got my pillows and blankets all set up and said, “Now, you sleep there for a bit or something!”

It made me laugh!  I was like his newborn baby and he needed a nap!  It was like he was tiptoeing off hoping he could catch a little break!

My first three weeks, I was bent over (from the abdomen incision) and couldn’t use my arms much at all. That’s a task. I would turn a light on with my forehead.  I couldn’t get into the bed, the car, or lift more than 5 pounds.  Luckily, my cell phone and the remote for Netflix were under the limit!  I also had to sleep in a recliner for about six weeks and didn’t get to sleep on my side until about eight weeks.

I found an amazing Facebook group of BRCA women and another group of women who have gone through DIEP flap surgery! This was a great place to go and research, vent, or find strength!  This is such a gift, because they are the only ladies who understand, yet they are strangers and non- judge mental! Loneliness sets in many times, but not with a group like this. 

When I was up in the early morning hours, and couldn’t sleep because of the pain, an itch, or because my pillow fell again (and, I just didn’t want to yell for Dustin AGAIN) I finally understood that true torturous insanity that insomnia causes.  The desperation for a simple luxury like sleep is so painfully frustrating.  During these moments, I could always go to others…. strangers…who were awake, also… and find strength and power in learning more or by reminding myself that my surgery was prophylactic and many of my BRCA sisters didn’t have that luxury! Cancer is such an awful thing, and regardless of my journey my reminder has always been how much worse it all could have been and how thankful I am!

My oldest son treated my surgery much like an oldest would.  He paid little attention.  It reminded me of when we brought home his little sister and he was six years old.  He was really too busy for all of that.  And, that’s okay.  He is me! He is still amazing!

My middle son is the complete opposite.  He allowed the hurt I was feeling to hurt him.  It truly affected his heart.  He cried with big eighth grade tears when he left me in Houston as he genuinely felt my pain and missed his mom. It made me hurt so much worse.  His gentleness was a preciousness that I will always remember.  When I came home for recovery, he would kiss me goodbye every single morning before he left for school. He is his father in so many ways!

My daughter was my nurse.  She helped shower me and do my hair.  She utilized this time and played with me like a doll.  I let her!  She had her head right in the middle of everything from dressing my wounds to bringing me medication.  She is a great future nurse!

My husband was the shocker.  Many times in the past nineteen plus years when sickness has come to visit, my husband has checked out.  All of a sudden, hay needs to be bailed or a project needs to be finished.  I’m buying the lice kit or I’m cleaning up the vomit, while my husband is washing his head at home with dog shampoo and bleach (not to get lice) or walking through the house with a mask over his mouth and “lysoling” all of the door knobs!  You get the picture! 

We weren’t really sure how he would handle being the sole care taker for his wife in total need!  But, he was what I married.  And,  like I said above about my middle child, he felt my pain.  I think I understand better now why he does take off when he does.  He feels that pain and it hurts him, and when I’m around to handle things he knows he can leave!  But, this scenario he was needed!

There was something so special in knowing that I could go through this with someone.  That’s what marriage is about.  I remember the verse in Genesis kind of bothering me as a young, newly wed female… you shall “Cleave” and become ONE.  I had spent twenty four years working so hard to become the best version of myself and becoming “one” didn’t seem right. But, after this type of experience there is nothing more beautiful than feeling the strength of your spouse and knowing that the two of you are ONE through every step! 

So, as we move into November. I will forever be thankful for learning that I had this genetic mutation, in the first place, and the chance to do something about it.  I am so thankful for the deep love of my spouse and our new closeness.   I am thankful for my family and friends throughout the process.  I am thankful that I am cancer free.  I am most of all thankful for the journey that has given me memories full of….love, laughs, tears, and forever scars as reminders to be thankful.  

Of course, I am thankful for my NET FLIX, TOO!