Post-surgery Firsts

Anyone who has had major surgery understands all the Firsts that follow.  The first time you remember opening your eyes.  The first time you get out of bed, sit in a chair, walk around the nurse’s station.  The first night out of intensive care, and the first nurse who lets you sleep longer than 30 minutes.

My double mastectomy was on March 3, 2017.  The plan going in to surgery included having a flap reconstruction (using tissue from my abdomen to rebuild my breasts), but that meant everything had to go perfectly.  The breast surgeon had to remove targeted lymph nodes and both breasts, saving the skin and nipples.  All of the initial pathologies needed to be clear, because, as the plastic surgeon told us, we won’t reconstruct new breasts knowing they have to be radiated. And the long hours of microsurgery to connect new vessels for blood flow had to go perfectly.  For me it was easy:  go to sleep; if I woke up with breasts, I knew that everything went as perfectly as possible.  The first I remember waking up in intensive care, my family was next to me and my youngest daughter said,  “Has anyone told you yet, mom?  You have new boobies!”   

I also woke up in intensive care with the temp in the room set to 78, and some kind of hot air blanket tucked around my neck and chest. Doctor’s orders. The constant warmth makes it easier for blood to flow in all the new vessels.  That new blood flow was monitored very closely using two wires coming out of the top of each breast.   I couldn’t really see them, certainly couldn’t feel them, but at least once each hour, a nurse would snap on a leed connected to an acoustic Doppler velocimeter, and we’d listen to the blood flow.  It was actually a beautiful sound.  The rush of blood, and the heart beat.  The rush and the beat.  The rush and the beat.  Watch the nurse’s face as she listens—-is it good?  Are they both strong?   It reminded me of  listening to my babies’ heartbeats when I was pregnant.   The hot room, hot blanket, blood pressure meds——all part of making sure blood is moving as it should.  A nurse found a small fan that blew right in my face and everyone kept cold wash cloths on my forehead.    Every little bit helped so much, but the most important thing was hearing the rhythmic rush of blood every hour.

My first visit with the plastic surgeon after leaving the hospital was on March 20, and the first day since surgery that I did not have to empty six drain bulbs--one under each breast, and two below bikini line.  (Haven’t worn a bikini since I was 18 years old, but it’s a polite way of saying a very tender spot!)  Those six drain tubes may have been the most annoying part of the recovery.   But the ugly, sometimes painful drains were also wonderful reminders that everything is working just as it should.  In the surgeon’s office, as he was snipping the little stitches and removing those tubes (it didn’t hurt at all, by the way), he told my husband that without those drains, a surgery like this would never be possible. God bless those annoying, nasty drains.

And, another really important First:  that first day I looked back over the weeks since surgery and I realized that I may have turned the corner, heading back to normal.  I’ve sneezed without cringing.  I’ve picked up something off the floor without thinking about it first.   I’ve done laundry, made the bed, walked in the park.  I can prep, cook, sit down for a meal, and even wash the dishes—-maybe not all on the same day, but I can do it! I’ve ventured out of the house several times to grab lunch, run an errand, get a pedicure.  It’s funny how I applaud myself for the smallest things.  I still tire easily, and I’m not quite standing as straight as I will in the weeks to come, but I feel ready to start pushing myself a little.  

It is not lost on me at all that I’ve had the freedom to go through this process gently.  I’ve had paid time off work.  I don’t have little children needing my attention.  When I’ve needed a nap at 10 AM and another at 2 PM, that’s ok.  And most importantly, I’m surrounded by loved ones who would do anything for me—and have!

I also fully know that I am one of the lucky ones.   My cancer was found early—-miraculously early.  I’m young enough and healthy enough to endure the major surgery.   My body was suited for the flap reconstruction. I have decent major medical insurance, access to great medical care, and some of the best doctors in the country.  My list of things for which I am thankful is not short.  But I know that’s not the story for all—-breast cancer or otherwise. While in intensive care, I heard Code Blues called—one I know did not survive.  I know a young woman who battled breast cancer a few years ago, but she has a hard time calling herself a “survivor” because her body seems to have turned on her in many other ways.  Another friend is recovering now from breast cancer surgery, and she faces months of chemo and radiation.  It’s still hard for me sometimes to reconcile that—-my joy in the light of others’ pains.   

But, this is my story—my truth to tell.  And maybe that’s another First-to-come:  learning to simply tell my stories in this Now — without apologies or the need to lay out a path. Ending Today where Today ends, and letting Tomorrow's Firsts find their own way.

Above the Storm: Finding the calm from a double mastectomy

Did you know there are a lot of websites that give advice for telling others you have cancer?   Do’s and Don’t’s.  How do you feel about it?  How much do you tell?  Whom do you tell?   One site, modified in 2016, actually reads, “Remember that you have control over how far you want to spread the word.”  No.  You really don’t. Especially not in this age of social media.   And, maybe that’s really ok. Preparing for the conversations, writing notes, weighing and measuring words—It can exhaust me.  It can also empower me.  That seems to be my choice.  So I do tell it—to anyone who wants to listen.  Because it is part of my Story, the Story of Deb.  And we should each tell our own stories, in our own way.  

So, here’s some of the medical stuff.   In December, the breast center called and asked me to return for a repeat of my yearly mammogram.  There was a bit of what she described as a wrinkled tissue in my left breast.  The follow-up mammogram and ultrasound confirmed what the radiologist had spotted, and a biopsy a couple of days later confirmed cancer.  The “lobular carcinoma in situ” (LCIS) was estimated to be less than 7 mm—-yes, 7 millimeters. My surgeon said it was incredible the radiologist even took note of it.  Even more incredible, while aiming for that microscopic tumor during the biopsy, they pulled back tissue from a second even smaller tumor.   The smaller one, invasive ductal carcinoma (IDC), is the nastier one.  It isn’t happy wrapped in its own little cocoon, it insists on spreading.  I read that about 80% of all breast cancers diagnosed are IDC—but being in good company doesn’t really help when the doctor calls with the news.

I love the image of eagles who sense a storm coming, and set their wings in such a way that the winds of that storm carry them higher, and they soar in the calm above.  My next storm is surgery.  It may not be the most popular of choices, but I will meet this diagnosis in a most radical way:  a double mastectomy.  The expectation is that the reconstruction can happen during the same procedure, so it could be a very long surgery.  I leave that choice to the surgeons in the room, who will decide what is best for me long term, using all the information they get during the mastectomy and biopsy of the lymph nodes.   Save what you can, just save my life.  For me, there’s something very peaceful about being in the middle of something that is totally out of my control.  There’s a calm that comes when I find that release.  I’m not in denial of the storm, I simply prefer the calm above.

It’s hard to explain and, understandably, hard for some to believe, that I have chosen to go through this experience with as much joy as I can find.  Gilda Radner wrote about her cancer diagnosis, and she said that she could go through it laughing and dancing or kicking and screaming, so she chose laughing and dancing.   I love that!  I choose that too. 

I told my husband that the way we choose to go through this will have an unmeasured effect on our family, especially our girls. So I’ve tried hard not to dwell on the unknown and the fears that can bring.  And I promise that I am not unaware of how truly lucky I am.  My mom survived breast cancer, but my dad did not survive glioblastoma, brain cancer.  I’ve been in the room as friends and family shed their human skin after cancer ate all it could of their bodies.  But I try to take every day as it comes to me, and fight the battle that is right in front of me, and not the many that can dwell in my imagination.    When I do that, I find the Peace.  And once I find the Peace, the Joy is very near.  My kids will remember that.  If they ever have to face this themselves or with someone they love, I want them to be able to point to this time, to me, and say, “Yes, it is absolutely possible to find joy and gratitude in all things.”  It isn’t always easy.  But it is, always, possible.

To get the word out to some of my closest girlfriends about my diagnosis, we threw a party!  We called it the Bye-Bye Boobies Party.  My house was filled with family and friends, food and wine, lots and lots of flowers, pink cocktails.  We laughed and played silly games and ate  boobie shaped cake balls.  We did talk about my upcoming surgery and recovery, but mostly we celebrated early detection.  We even collected money to send to a local organization that provides mammograms, biopsies, and other resources to women regardless of their ability to pay.  When I collapsed into the bed that night, exhausted, I only had one thought:  Thank You!  And what a special feeling it is to be facing a scary diagnosis and surgery and the biggest thought in my head is Thanks.

I know, there are days are ahead where joys will seem hidden.  I will have to peel away layers of fear, pain, drugs.  But I will—I will peel, or claw and scratch my way through all that blocks me from finding the joy in this, because the joy is there.  Joy.  Not so much Happiness.  I’m not happy about any of this.  I’m not looking forward to having parts of me amputated and replaced with other parts of me.  But it is here—right in front of me. And I have to go through it one way or another.  So I set my heart and mind on the Joy.  

I set my wings to catch the winds and rise above the storm.