A Previvor at Last!

By Previve on January 27, 2011 | Category: Claudia's Blog | 11 Comments

After months and months of preparation, I can hardly believe the surgery is done and I’m recovering!   I could never conceive of anything after January 11th.  That Tuesday stood out to me as the biggest, most insurmountable day of all time.  Even though the New Year just began, my calendar abruptly ended on January 11th.  It was going to be a very short year.

I do remember enough from the 11th to make it pretty darn significant.  It began with an alarm clock set for 6:20am.  I wanted to straighten my hair to look composed so maybe, just maybe, I would feel composed, too.  It worked for the most part, though I couldn’t put on any deodorant or make-up, and the bags under my eyes looked like they accidentally got the implants meant for my breasts.  It was hard to sleep that week leading up to surgery.  And it showed.  But I put on some cozy pants and a nice button-down sweater, soon to be replaced for a light cotton hospital gown.

I also remembered to bring a very special photograph, one of my dear grandmother holding me after my birth at Georgetown University Hospital, the same hospital where I was about to be re-born in a sense.  She was wearing the same gown I was about to sport, and she cradled me in her arms with all the pride and joy of a grandmother in those first few moments with her grandchild.  I liked this picture because I wanted to think that my grandmother, the remarkable woman from whom I inherited my BRCA-1 mutation, would cradle me in the same way during my surgery.

Everyone arrived to my house at 7:00am.  First my film crew, Maureen and Jake, came knocking.  My mom and Aunt Alice went by Starbucks beforehand and showed up a few minutes later with nice big cups of coffee.  I’m not a big coffee drinker, but when you can’t have a drop to drink before surgery, even cold prune juice seems heavenly.

Oddly enough, I kept dreaming the night before that I would innocently take a sip of water or that I would find food, take a bite, and only afterwards realize the irrevocable damage I had done.  In every dream, it was always chicken breast.  And in each dream I would cringe in dread to think that I accidentally delayed my surgery because of one stupid bite of greasy, delicious breast.  Interesting.

Anyway, I’m not sure what that meant, but before I could let my thirst or hunger get the best of me, it was time to get in the car and head to the hospital.  My boyfriend and I drove in one car, while my film crew and family pursued behind in true caravan fashion.

Once we arrived to the hospital, I went to registration and paid a $100 deposit.  My health insurance is covering 90% of everything, which is far more than I ever expected.  But that measly 10% is not actually so measly after it’s all tallied up.  For example, I’ll need to pay the hospital over $1,000 for the surgery and my hospital stay.  The plastic surgeon will also be well over $1,000, and I imagine that the bill for the breast surgeon and anesthesiologist will resemble similar figures.  So, in the end, the tab should ring up to $4,000-$5,000, hopefully!

As a young professional working for a non-profit, attempting to pay these bill will be no walk in the park.   But I try to remain optimistic and remind myself that this is far better than the other option, which is years of expensive surveillance eventually followed by the cost of battling breast cancer and a mastectomy.  So hand over the bill!  The investment will be worth every penny, whether I have it or not.

Once I paid my deposit, my posse and I migrated over to the surgery center and checked in at the waiting room.  My clan took up an entire wing.  With me came my mother, aunt, boyfriend, grandfather, his wife, my director, and my videographer.  Just as I got comfy in my seat, the nurse called my name, and it was time to go back.

As I lingered in my chair, a thought crossed my mind.  Could I have one big, massive freak out and postpone the inevitable for a while longer?  Maybe.  But I so desperately wanted this to be over with once and for all.  Just as you dread that final exam, you also pine for the relief that comes only by completing the test.  So up I stood, ready to rock n’ roll.

At first only one family member could accompany me, so the nurse escorted me and my mom to a pre-op receiving room.  Many people came and went from that room to prepare me for surgery, but it all started with the pre-op nurse.  This sweet woman spoke quickly and asked me lots of questions.  What questions, I couldn’t tell you, because at this point I was finally getting nervous.  And when I get nervous, I sweat.  If you haven’t noticed, one can get a little smelly without deodorant, which I was not allowed to wear to the hospital.  I wish I thought to pack air freshener in my overnight bag.  Oh well.

Shortly afterward, my boyfriend and my Aunt Alice popped into the room.  Then came my grandparents.  We managed to fit all the family in at one point, and it was wonderful seeing all of their faces around me.  My sweet, sweet mother may have been a little more nervous than I was that morning.  If I were the mother in this situation, I would be losing it.  I don’t know how she kept half as much cool as she did.

But my wonderful boyfriend was our rock that day.  His calming, loving presence kept all of us from having one big old-fashioned melt down in that tiny pre-op room.  That would have been a story for the ages.  He just kept smiling at me from the corner of the room, that sweet little smile that soothed every nerve in my body.  And when my mom got a little anxious, he swept in, took my hand, and never let go.  The last thing I remember is him telling me how beautiful I was (in this unsightly state) as they wheeled me off to the operating room.

Anyway, I could sing his praises all day, but back to the story!  It wasn’t long before the nurse, resident or doctor (I can’t remember which), showed up to put in my IV.  Since I couldn’t drink for 12 hours beforehand, I was super dehydrated, and my big, fat veins were not cooperating.  I’ve never been a fan of needles, so after the second or third attempt, all of those pent-up tears were suddenly unleashed like an untapped fire hydrant that sprays endlessly in every direction.  Finally the nurse/doctor/resident resorted to a pediatric IV since I was wailing like a baby.  Once they knocked me out in the operating room, they finally gave me an IV meant for a 23-year-old woman.

Right as I was crying like Old Faithful, my friend Carol walked into the room.  When I graduated from college, I volunteered at Lombardi, the cancer center at Georgetown University Hospital, as a Patient Navigator, assisting women before their breast surgeries, and Carol was my supervisor and friend.  I try to be strong for myself and for those around me, so I felt awful that I was weeping uncontrollably when Carol stepped into the room.  But I managed to pull it together once the baby IV was set.  It was wonderful to have Carol and Nancy, my old supervisors, there to check on me and advocate for any of my needs.

Soon my plastic surgeon’s team arrived, and Dr. Spear swept into the room with his white coat on, ready to go.  I love Dr. Spear.  He’s got a great sense of humor and always makes me laugh.  So he had me rolling in no time.  Boy, did I need a good laugh!

Dr. Spear also loves his Sharpies.  He likes to color code his work just like me.  You should see every flash card, study guide, manual, filing cabinet, binder, and calendar I’ve ever laid a finger on for school or for work.  Every topic or subject has it’s own distinct, bright color.  My favorite event or subject is always in pink.  Soon enough, my breasts were also color-coded like everything else in my life.

Dr. Spear drew where Dr. Willey, my breast surgeon, would make the incisions.  I could either make a sideways S-shaped incision above my nipple or I could go with a 6-inch incision below the flap of my breast.  The first cut is easier for doctors because from this central location they can easily access and remove any and all breast tissue.  From below the flap it’s more difficult for surgeons because they have to work harder to get everything from the top of the breast.

For months I was dead-set on the S-shape incision.  Even though it was going to be on my breast, it was easier for the surgeons to get everything out, and that was more important to me than the aesthetics.  But in those few minutes leading up to surgery, I asked Dr. Spear about the other option.  Even though it’s harder, could they still scoop everything, absolutely everything, out this way?

Dr. Willey soon appeared, and she and Dr. Spear exchanged some doctor-y words.  Then they both translated to me that they felt they could do this.  It would be harder work for my breast surgeon to perform the mastectomies and my surgery might last a little longer as a result, but due to my body type and breast size they gave me the green light!  So in those last few minutes I decided to go with under-the-flap and changed how my breasts would look for the rest of my life.

But before we came to this decision, Dr. Spear pulled out a razor of sorts.  Okay, whoa whoa whoa.  Why is he holding something sharp right now??  He’s not even in his scrubs yet, and I’m no where near knocked out!  He told me not to worry, he was just going to etch in his incision marks.  Years ago a very over-ambitious nurse scrubbed down a patient before surgery so that the doctors would have a clean slate to work with – major oops!  So Dr. Spear does this every time to prevent the same thing from ever happening again.

It definitely sent me for a trip when my surgeon took the sharp object to my skin right before show time.  I have an incredibly wild imagination, so my mind was running a mile a minute while I felt the needle scratch over my nipple and under the folds of my breast.  I pictured myself on the operating table with my breasts exposed under the bright, sterile lamps of the operating room.  Then I could imagine these same hands in bloody latex gloves holding a shiny silver scalpel in place of that tiny needle.  All of these images were too much to bear.  If there was an anesthesia mask anywhere nearby, I would have lept for it and knocked myself out faster than you could blink.

Alas, there was no mask to be found, but the anesthesiologist soon walked in the room with her assistant.  It’s funny, I don’t even remember her name, although I’m sure I’ll know it well once I get the hefty medical bill.  But this woman was incredibly kind and wore a bright pink surgical cap.  I liked that.  And I especially liked that she had a cocktail that would put my weary mind to rest.

“Are you ready?” she asked.  Gosh, I’ve been ready since August 2008 when I tested positive for my dangerous genetic mutation.  I was ready when I saw the sea of pink flow past my bedroom window two months later during the AVON walk, when I realized for the first time that breast cancer was also my cause whether I liked it or not.  I was ready that same month when I saw reconstructed breasts for the first time on film during a public screening of the documentary In the Family.

This young woman in the film kept her skin and nipples, so her breasts looked nearly the same as my own natural breasts but just a little perkier and more perfect.  As a 21-year-old young woman, I was more concerned about an impending mastectomy rather than the threat of breast cancer when I received the phone call from my genetic counselor with my test results.  I quietly wept in that auditorium, trying not to disturb the medical students sitting around me, when I saw her breasts on screen.  It was at that moment when I finally knew I had options.  My family legacy wasn’t going to leave me bitter and flat-chested with railroad track scars in place of my healthy but dangerous breasts. Instead, I could overcome this cancer risk and still look like the same young woman with the same promising future I assumed I had before all of this hit the fan.  This woman helped me realize that I was going to be better than okay.  I was going to healthy, beautiful and empowered.  That’s when I wept and wept, my tears washing away all the fears that previously consumed me.

So yes, Ms. Anesthesiologist with the happy pink surgical cap, I’m more ready than you could ever imagine.  Please, please, bring me peace.  At this point, she hooked up my IV to some powerful anti-anxiety and pain medication that slowly and then very, very quickly soothed every nerve in my tense body.

At this point, my memory begins to fail me and the vivid, crystal-clear details of the morning fade to gray.  My last foggy memory is of my boyfriend telling me I’m beautiful.  Lights out.

6-7 Hours Later…

Someone is jostling my arms very roughly.  There’s a woman lifting my right arm and droping it suddenly to the hospital bed.  Ouch, ouch, ouch.  There’s ouch everywhere.  The first thing I think to say is gentle, please.   Now I realize I can’t breathe.  It hurts to expand my chest, and I’m short of breath.  It feels like a big, fat elephant just got cozy on my chest.  The pressure literally takes my breath away.

“On a scale from 1-10, how would you rate your pain?” says a nurse, somewhere.  I whisper 12.  Before my surgery, family and friends couched me to never underestimate my pain, don’t be cavalier.  If you have to, always be a 10.

Suddenly, I feel much more at ease and I can breathe again.  The nurse asks me now what my pain level is, and I respond with 10.  She wonders out loud how this could be because they just gave me a boat load of medicine, so, okay, I might have exaggerated.  I relent and say 8.

Wait, where am I?  Oh my God, wait a minute, did I just finish with surgery??  Did I do it??  Oh my God!

I need to speak!  I need to speak right now!  I did it!!!  Guess what, nurse with blonde wavy hair, I’m done!  I’m so happy!!  I want sing and dance, I’m so relieved and overcome with joy!  Wait, I can’t do that.  Ouch.  It hurts to move.  But, Lord, I could cry.  I think I am crying.  Oh my God, I did it!

Then I realize I’ve been sputtering out gargled words for a solid minute and making absolutely no sense.  Since I had a breathing tube down my throat for nearly seven hours, I sound like a big, hairy monster straight out of the Wild Things.  My mouth is so dry I can’t formulate my words.

Well, this is frustrating, but I’m going to keep talking because there’s no stopping me now!  The nurse has blonde wavy hair and a sweet smile.  She politely urges me to stop talking for a little bit, if I can spare it, because I need to rest.  No way.  Not now.  I just had my mastectomies that I was freaking out about for 10 months, and I’m still in the land of the living!

Oh my God, my breast cancer risk is behind me.  I’m no longer at high risk for a disease that haunted me day and night.  I feel so freed, so liberated, but, ouch, it hurts to move.  This is going to take a long, long time to sink in.

Some time passes.  I strike up conversation with the blonde nurse, and she tells me how she’s in the Army Reserve.  I think we made some other connections, but they’re a little fuzzy.  I just remember asking her all about her life and occasionally interrupting to tell her how immensely relieved I felt.

Since I wasn’t going to stop talking anytime soon, the nurse fed me ice chips to help with my dry mouth so my words could make a little sense.  Then, something heavenly happened, she offered me a soda.  I’ve had a lot of Diet Coke in my time, but this particular Diet Coke could have quite possibly been the best one I ever had.  With the help of a bendy straw, my nurse offered my sips of Diet Coke in between ice chips and, let me tell you, I was in good shape.

Eventually she lifts my hospital gown so I can see my new breasts.  It hurts to look down, but I lifted my head as far down as I could, and there they were!  It felt like I was catching that first glimpse of my first-born child.  I was overwhelmed with tremendous pride and bounds of joy.  They were so beautiful!!  My nipples hadn’t discolored (yet) and I couldn’t even see the scars, they were hidden underneath the flaps of my breasts.  The temporary expander implants made them look slightly different, but I thought it was character-building for them.  After all, as my plastic surgeon reminded me right before surgery, with the expanders this will only be  a rough draft of how the final produce will look like.  But I was more than pleased with this rough draft and was quickly falling in love with my new breasts and this new life ahead of me.

All of the sudden my boyfriend reappears.  In my strange monster-like language, which is slowly resembling English, I tell him that I did it!  He takes my hand and kisses me.  Then my mom and my aunt come around the curtain.  I keep telling everyone how I’m so incredibly, immensely happy.

Then I catch a glimpse of my hand.  Why am I so fat?? I can’t even see my knuckles, they’re indented into my hand.  I suddenly was transformed from a Wild Thing to the enormous white Stay Puft Marshmallow Man from Ghost Busters.  I ask to see a mirror to see my face.  What on earth??  My face is just as swollen as my hand!  I worked out so much leading up to my surgery, running nearly five miles a day to make sure I was in the best shape before I hit the operating table.  So how on God’s green earth did I mushroom up like this over the span of six or seven hours!  No one warned me about this!

The sweet blonde nurse reassured me that it was just saline.  During the surgery, they pumped my little body up with lots and lots of liquid and medication.  Over the course of the next few days I would pee everything out.  Sure enough, I was peeing like a race horse by the next day.  Too bad people can’t lose weight like this ordinarily.

At one point some of the fellows and residents who were in the operating room came in to check on me.  Dr. Spear’s talented fellow, Dr. Rotman, told me the surgery went impeccably well, it was one of his best.  Oh man, I was relieved to simply be done.  But now I’m over the moon.  I mean, it just can’t get any better than this!

Then suddenly I feel sleepy.  I’m finally worn out, and I can feel my heavy eye lids eventually give way to sleep.

Overnight at the Hospital

By around 9pm, a room became available upstairs.  I remember I was in 7 Bles because 7 is my lucky number, so this had to be good!  My mother and my boyfriend accompanied me upstairs to my room, where I said goodbye to the wonderful recovery nurse and met the next incredible member of Georgetown’s nursing crew.  My nurse upstairs stayed with me through the night, and was incredibly kind, attentive and patient.

I could tell my boyfriend was exhausted and there was only one chair in my room, so I told him to please stay the night at my house down the road.  With great hesitancy, he left to get some rest before work the next day.  So my mom and I got cozy.  Well, my mom tried, while I had no complaints with the hospital bed!

My chest felt so incredibly tight.  My poor peck muscles were totally blindsided a few hours ago and now they said no fair, time-out.  It is gut-wrenching to laugh or cough, the pain is too much.  So, naturally, this is when I develop a lingering case of hiccups that reappear periodically throughout the next week of my recovery.  Man, my pecks must have been really chuckling hard then.  Take that, they must have thought, you make us suffer like this so we’re going to make you suffer, too.

It didn’t take long for me to realize that morphine was not gonna cut it.  Everybody responds differently to heavy pain medication, and it turns out Vicodin and Valium were the cocktail that worked best for me.  But I could only take this heavenly blend every six hours.  So my nurse  there was a magical narcotic called Dilaudid that I took in between my Vicodin/Valium mix.  Once I got on this drug regiment, I was feeling great.

The nurse also helped my mom and I learn how to measure my drains.  I had two drains placed on the side of each breast.  These drains went about 3-5 inches into me and collected wound fluid.  If wound fluid builds up, it can cause infection, so this is a way to get everything out and heal up.  I also had a liticain pump strung into the site of the incisions to numb everything.  So, needless to say, I felt like a Christmas tree with lots of interesting ornaments.  My mom had to help me measure the nasty red, then orange/yellow, wound fluid every 12 hours.  Once a drain measured below 30cc’s over a 24 hours period, it could finally be removed.  I’ll write more about that thrilling experience in my next post.

Eventually the nurse wanted me to try and use the restroom before I went to bed.  So around 11pm she comes to the room and helps me sit up.  This is when I realize sitting up is impossible.  My peck muscles will absolutely not allow it.  But I roll to my side and, with the help of the nurse, ease my way up.  I sit there for a minute, collecting my bearing.  The implants underneath my stretched muscles feel so foreign and heavy.  Then I realize the room is spinning.  This is going to be an interesting 5-foot walk to the bathroom.

After a minute or two, I stand up and slowly shuffle to the bathroom, feeling more and more nauseas with each small step.  Once I make it to the bathroom, I realize I can’t go to the bathroom on my own.  The nurse has to help me pull down my pajama bottoms and then she has to pull the toilet paper off the roll for me.  All this activity was far too much for my weary muscles.

To make it worse, it took forever to eventually get a tinkle to come.  The doctors placed a catheter in me during the surgery, so it took my body a while to re-acclimate.  Eventually, after sitting on the toilet for a couple of minutes, I finally heard that tinkle we all had been praying for!  By the next day it was much easier to use the restroom, and I finally was releasing all the saline that my body absorbed during the surgery.

Once I shuffled back to the bed, I was very motion sick.  For a minute I thought I was going to need a bed pan or something to receive all my insides, although there was nothing in stomach.  But once I laid down, the world settled and everything regained equilibrium.

I feel asleep for a little bit, but I jolted awake around 3:00am, too excited to sleep.  I mean, how could I sleep after finally overcoming this enormous obstacle?  So I just laid in bed, as quiet as possible so my mother could at least pretend to sleep in that uncomfortable lazy-boy hospital chair.  The night eventually faded away to early morning sunshine outside the hospital window.  It was, indeed, a new day.

Leaving the Hospital

In the morning, my surgeons and their teams visited my room to check in on me and the “girls”.  They were both tremendously impressed with the outcome and it showed in their assessment of me the next morning.  Although Dr. Spear cautioned me not to celebrate too prematurely, that there was still a very small risk of infection, so I needed to be careful and focus on recovering.  Sure, but there was no turning off my celebration mode now!

Even though I could feel that my body was tired, the adrenalin transformed me into a wide-eyed Chatty Cathy.  The nurse helped me to the bathroom a few more times, lifting me in and out of my bed since I couldn’t do so on my own.  But once I was on my feet, I shuffled more quickly trying to show off for my mom and the nurse.

My nausea was never an issue again at the hospital.  I was very lucky in that matter, because a lot of women suffer from nausea after all the anesthesia.  Turns out, I responded exactly as my mother did from anesthesia after her oophorectomy.  She also woke up completely alert, Chatty Cathy.  My dad, on the other hand, took a couple weeks to come to after surgery.  The anesthesia lingered in his body and kept him very groggy.

In the morning, my dear friend from college came by to visit me and feed me breakfast.  Raluca is now a second-year medical student at Georgetown, so she wanted to check in on me and help my mom however she could.  Raluca fed me each bite of my grits and egg croissant breakfast sandwich and came back a couple hours later to make sure everything was going well.  It was wonderful to see her kind, familiar face throughout the morning, she’s going to be a great doctor someday soon!

Then my boyfriend, my grandfather and his wife came back to check on me.  Janie, my grandfather’s wife, has long nails, and my back itched like none other from the pain medication.  So I recruited Janie to be my official back-scratcher.  I remember standing up for what felt like 10 minutes while she scratched every corner of my itchy back.  I’ve never had a back scratch feel so glorious.

It was nearing 1:00pm, and I had been given the “okay” to discharge by my surgeons at 7:00am, so we were finally ready to hit the road.  Someone helped me change into a comfortable pink flanel button-down shirt and some raspberry-color velour pants.  I recruited someone else to help me pull up my black Uggs, then I was good to go!

Since I was still in show-off mode, I thought I’d walk up and down the halls of the hospital while I waited for my mother to fetch the car.  I was moving slow on my narcodic pain medication, but I felt good to stretch my legs and do a couple of laps.  My boyfriend and Raluca walked up and down with me while other post-op patients whizzed past me in their hospital gowns, carrying their IVs in one hand and keeping their gown shut with the other.  I had been totally one-up’d.

Once my mom got the car, my boyfriend, Raluca and I went downstairs to load me up in the car.  I couldn’t pull the car door open, and I eased my way slowly into the car seat.  Easy does it.  Then I remembered I needed a seat belt.  Oh Lord.  I would rather die in any car accident than put a seat belt across my chest.  We found a way to slip it across my waist and put the rest of the belt behind me.  Okay, this would work, I could live with this.

My mom kicked the car into gear, and we were off!  After surgery, you realize every single teeny tiny bump in the road, and there are lots of bumps and pot holes in the roads in and surrounding the Washington metropolitan area.  Each bump or pot hole was excruciating, so my mother drove like a 90-year-old woman to Alexandria, Virginia, where I stayed with family friends for the first four days after my surgery.

After the most excruciating 20-30 minute car ride of my life, we made it to our destination!  I stayed up for a few more minutes, but finally my fatigue caught up with me.  My mom and boyfriend, along with my family friends, helped get me situated in my guest room.  And then it was lights out, again, but this time for nearly a week.

This is when my recovery truly began.  There are so many more things to write about the past two weeks, but I will begin a new post and update everyone with this much!  In the meantime, I’m back to my home and doing great!  My energy and strength is slowly returning to me, and all of my drains have been removed, so I feel like a new woman!  The worst of it all is over, and I feel nothing but great relief.  I’ve realized that being a Previvor is all about peace.  It’s about finding peace of mind and living joyfully.  And now I’m there, that peace is mine now, too.  Thank you, Memamma and Papa, for bringing this peace to me, I feel nothing but ebullience.