I Loved Lucy

Surgery is behind us, and I’m well into my recovery.  I’ve been instructed to take it easy and do very little during this time off, and have multiple restrictions on lifting, moving, and physical activity.  Now, “time off” sounds wonderful, and eight weeks recovery time off sounds a little like heaven, right?  Except you can only nap, read, watch bad TV, nap, walk the block, nap, grab a snack, nap some more, then take another nap just so many times before you start to lose your mind.  Anyone who knows me even a little bit also knows that the hardest part of this recovery is “taking it easy.”

(My apologies in advance for the length of this blog post.  Brevity was never my strong suit).

The surgery itself went smoothly, and was a rousing success.  Surgery day starts early – 4:30 a.m. to be exact, so we can be at U of M by 6:30 am.  We check in with a smiling, chipper (and highly caffeinated, I suspect) admin.  She sees my doctor’s name and smiles coyly.  “He’s a great surgeon,” she says, “And, you know – a man knows what we need when it comes to this kind of surgery.  You’re in great hands.”

Good thing I have a man to tell me what I need to do with my breasts…....  Ugh.  I realize my non-caffeinated, nerve-wracked, sleepless and unhappy ass just isn’t in the mood for crap this morning, but I don’t want to go into this with negative energy so I take a deep breath, appreciate her comment in my heart, and smile.  I’m feeling sensitive and tender, and a whole range of emotions I’m not certain of, and I’m trying not to become the ticking time bomb on the verge of explosion.

Ken and I are escorted back to pre-surgery holding, and someone later sneaks Stephanie back to be with us (the rule is only one visitor pre-surgery, but she’s charming and beautiful and someone is kind this scary morning).  Eventually the nurse comes in to start my IV.  She seems gentle and patient (as every nurse who starts an IV should be) as I point out the one vein in my right arm that works best.  She taps it several times, then asks the magical question:

“Are you a hard stick?”

I let her know that yes, starting IVs can be a challenge, and we can only use my right arm.  “But hey,” I say, “I do have my power port – can we use that?”

She’s pleased with the idea of the port and doesn’t hesitate to consider that the best option, so in an instant my port is accessed with an IV line, and no hunt had to take place in my arm to find a vein.

Little did I know that this convenience for me would be the catalyst for blame and questioning.

A few minutes later the anesthesiologist stops by to introduce herself and her team, and after a few medical history questions she turns my arm over to see the IV.

Except it’s not there, and the quizzical look on her face is priceless.

I point to the port and she says, “Why did they start your IV in your port?”

The question felt a little accusatory, as though I demanded my port be used.  She didn’t seem necessarily pleased but said, “Well, we’ll get you started with this but because you’re having surgery on your chest it’ll be in the way.  We’ll have to move it to another location so don’t be surprised if you wake up with something in your foot.”

Thank goodness they can knock me out before THAT excitement begins!

Next the oncological surgeon stops by to chat briefly.  “Come on in,” I tell him, “Join the party!”
“I think we have different ideas of ‘party’,” he deadpans.

Just trying to keep it light in the face of life-changing surgery.  Much of a buzzkill, doc?

He immediately hones in on the port IV and asks the same question:  “Why is this here?  We’re going to have to move this.”  Again – accusatory.  Really?  Whatever.  He doesn’t ask if I have questions, just lets me know the pathology will take five days and they’ll call me with the results.  He’s in and out in less than 2 minutes, and I put him out of my mind.  Definitely not inviting him to any more of my pre-surgical parties.

Next comes The Team – my plastic surgeon and five of his minions.  Two are fellows, and three are residents.  One resident named John has a large green stain on his white coat…oh, wait, that’s a Spartan on his pocket.  He’s a brave man to have wandered into Wolverine territory.

Dr. M and I chat briefly about the surgery, a routine conversation we’ve already had.  The oncological surgeon will start by completing the mastectomy on my left breast, then Dr. M and his team will move in and begin the reconstruction process.  The surgery will take several hours and they don’t expect complications.

He then pulls out the medical-grade Sharpie, and has me open my gown so he can mark me for surgery.  With my family and his team watching he creates abstract art on my body, leaving purple marks from my sternal notch to my pubic bone.  I have a large open-mouth smile on my abdomen:  a long straight line from hip-to-hip above my belly button, opening to a large dip down to my pubic bone.  Like one eye winking, my left nipple is circled in purple, and a lone tooth created by drawing a purple circle around my belly button.

My torso resembles a living Picasso.

Kneeling down, eyes belly-level, he again does the squish-the-tummy, squish-the-breast dance – back and forth a couple of times, determining how much tissue in my tummy he has to work with, and how much he’ll need based on what he needs to recreate.  He, too, is obviously and vocally unhappy about the port IV, and even though I tell him it’ll be moved after surgery starts, he’s not pleased.  With that he’s done, and the herd of doctors moves along.

Within a few minutes I’m kissing Ken and Stephanie and moving down the hall to the OR.  I’ve already had a quick injection of joy juice and I remember very little of this period except that there are many people in the OR, calling out their teams and positions.  A flurry of activity is swirling around me – instruments clinking in trays, conversations about last night’s baseball game, shuffling bodies bumping into me as I lay on the narrow table.  I try to bear witness this activity as part of the surgical experience but my brain is confused and my eyes won’t focus and I feel my anxiety level rising and I think I’ve changed my mind.  I can’t do this.  I can’t.

It suddenly becomes all to real, what’s about to happen.  I thought I was prepared.  It still isn’t enough, and I’m suddenly overwhelmingly sad down to the depths of my heart and soul.  My right hand cradles my left breast and my left hand gently rubs my tummy as a tear rolls down my cheek.  Over her mask the anesthesiologist peers into my eyes and asks if I’m okay, and all I can do it nod.  I am.  But I’m not.  And I sense that she gets that as she nods slightly and her eyes close momentarily in understanding.

That’s the last thing I remember.

Bits and pieces of recovery come back to me.  I remember being warm and cozy, Ken’s face above mine, smiling.  Very nice nurses asking my pain level (zero, thank goodness), reminding me to wake up.  I close my eyes and listen to the noises around me until I’m reminded again to wake up.  It’s 5:00…5:15…what time is it exactly?  I’m hot, this blanket needs to go, I try to push it off and the nurse tells me no, you need to keep the warming blanket on, and I close my eyes again…

It takes three nurses to move me to my room – one to push the bed, the other two to lug all of the equipment I’m hooked up to.  Once we arrive and I’m settled I take an inventory of all the balls and chains lined up around my bed:  compression sleeves on each leg, electronically hugging one calf, then the other; a Foley catheter hanging off the side of my bed; and the IV pole with my new BFF, the PCA pump with a little green-light button that, when pressed by myself, delivered a gentle dose of morphine to my now-aching body.  From neck to knees I’m covered in a warming blanket called a Bair Hugger.  Attached to a noisy compressor the size of a suitcase, warm air is forced through a flexible hose reminiscent of the home hair-dryer of my childhood.  The hose plugs into the “blanket” which is more like a blow-up pool raft, the underside of which has small holes through which the warm air (approximately 116 degrees) flows out against my skin.  This is designed to improve circulation by keeping the blood vessels in my chest open and flowing.

The nurse tells me I’ll wear this “for a few hours.”  She doesn’t tell me a “few” is actually 48.  I’m pretty sure that’s more like “many”.  Not only does it keep me warm but it sets off multiple hot flashes that make me whine like a baby.

I dub thee my own “personal summer”.

There is also a wire running from my breast to a small machine called a ViOPtix, which measures the venous and arterial blood flow in the flap.  The first 48 hours are the most critical for flap failure, so every hour the nurse will come in to check the ViOPtix.  If we make it through the first 48 hours, the next 48 hours are the next critical period, but checks will be every two hours.  The nurse also uses a tiny Doppler wand to listen for blood flow in the flap.  It sounds like a baby heartbeat, and reminds me of the ultrasounds I had when pregnant.

The head and knees of my bed are raised to keep my midsection bent at an angle, while I am forced to lay on my back.  I’ll lay in this position for the first three or four weeks as it supports the integrity of the sutures across my belly as they heal.  Long-term, I’ll be sleeping in a recliner when I get home, and won’t be able to stand straight up for several weeks.

Before letting my family in to visit, the nurses pull back the warming blanket and my gown, and I get the first glimpse of the end result of the pre-surgical Picasso drawing.  My incisions are closed with internal sutures and covered with glue to help protect from infection.  There are red incision lines criss-crossing my body, and three JP drains coming out of each side of my abdominal incision and my left breast.

It’s a little more than I can bear at this moment.  I push my PCA button just to dull the emotional pain for a while

I’m allowed to suck on ice chips and Ken is kind enough to keep me supplied.  He sleeps at my side, waking up every hour when the nurse comes in to check me out.  That first night there is no real sleep; the air compressor is loud and annoying, the IV alarm keeps going off, I’m being poked and prodded every hour.  I’m not a back sleeper and this weird head/knee angle thing is making me crazy.  Eventually I’m able to nod off for a few minutes in between visits.

On Friday morning I’m told I won’t be able to eat until the next day, in case I need to be whisked back into surgery.  By now I’m having constant “personal summers” under the Bair Hugger and am getting pissed off about the heat.  I pull back the blanket momentarily, just for a bit of relief in the middle of an extraordinarily bad hot flash, when one of the surgeons comes in to check on me.  He admonishes me for removing the blanket as though I were a child.  I can do great things for short periods of time, and since I’m still under the illusion that it’ll only be a “few” hours of misery, I fold it back over my chest.

Shortly after, the IV alarm goes off.  I buzz for the nurse and she comes and fiddles with it and it stops.  Five minutes later, it goes off again and once again she fiddles with it.  The error message indicates the IV is occluded, and she moves the tubing from the top all the way to my hand (ouch!!)  The alarm stops but as she leaves the room, it goes off again.  This time, no amount of moving the tubing shuts it down.

“I hate to be the bearer of bad news,” she says, “but I think we’re going to have to pull this IV.  And start another one.”

We both laugh in that weird, uncomfortable way of knowing that this is not a good idea.  When I first arrived in my room we discovered I had been repeatedly poked for IVs during surgery, apparently with little success.  I have bandages on the crook of my inner right arm, an obvious stick mark in the vein next to the one where my current IV is located, another bandaid on the top of my left foot, and also on the outside of my left knee.  Success was finally found in the top of my right foot, which was quickly removed after surgery, leaving behind yet another bandaid.

I mention my power port and ask if we can use that instead (I’m feeling more confident about this suggestion now, than after the pre-surgical fiasco of the day before).  The nurse agrees this is a good idea and calls Vascular to access the port.  In the meantime, she says, we’ll just remove the IV and check your ViOPtix.

In one swift movement the IV is out and covered with a wad of gauze and tape.  She moves to my left side and we listen for the little whooshing sound of the heartbeat coming from my breast.  I’m commenting about how beautiful and remarkable that sound is, when I feel something wet on my leg and look…

…to see my IV spot is bleeding profusely.  The wad of gauze is completely soaked through, the blanket is blooming with a red moonflower, and my gown is drenched.  She changes the dressing and I apply pressure to hold in whatever blood is left in my body.  Seems like a good time to get a sponge bath and change the linens. 

A few minutes later Vascular arrives and in moments, my port has been accessed yet again.  Shortly thereafter my IV and PCA are reconnected, I’ve had a lovely sponge bath and am feeling clean and happy (albeit still hot).

During the day my blood pressure falls precariously, eventually bottoming out in the low 80s/ low 40s, and my fever spikes to 101.  Luckily the port allows them to very quickly push IV fluids which, after a couple of bags, brings my BP back into a more normal range, and my temperature eventually comes back down as well.

Too much excitement for one day.  *pushes my green button*  Time for a nap.

I sleep fitfully that night, as my back is starting to hurt intensely from laying in one position for so long.  On Saturday morning at 6:00 the nurse and assistant come in to check my vitals. I am completely and utterly over this whole experience.  I’m frickin’ burning up under this stupid hot blanket, my back is screaming at me to MOVE TO A NEW POSITION, and if my legs get hugged one more time I’m going to throw a fit.  

“I need out of this bed,” I say in a fairly-snotty voice.  This makes them very happy as I should have been up and walking yesterday, but my lowered BP wasn’t supportive to walking the halls.

I’m advised to “push the green button” because this move is likely to be painful.  Within a few minutes I’m slowly, careful, and fearfully rolling over to one side and with a great deal of support, I’m sitting on the edge of the bed.  I’m tangled in a jumble of wires and tubing so all the machines are moved to the other side of the bed.  I stand and take a few slow step towards the recliner, and gently sit down.

Ta-da!!  *pushes the green button again*

Getting out of bed is a pivotal moment, and almost everything changes.  The Foley is removed, and my BFF takes a hike.  My saline drip is disconnected, but the port access remains.  The leg huggers come off in anticipation of my first walk down the hall.  In the end, the only things I remain tied to are the Bair Hugger and the ViOPtix.

This is my chance to break free of that stupid warming blanket, so I ask Ken to help me take a quick sponge bath, after which I take my first walk down the hall.  It’s surprisingly hard and exhausting, and after 100 feet or so I have to turn around and come back to the room.  I climb into bed to rest for a few minutes, and am informed I can eat again.  FOOD, GLORIOUS FOOD!!!  I’m presented with the menu and see it’s a liquid-only diet.  

“You can have anything on that menu.  Except no coffee.  Or chocolate.  No caffeine, sorry.”

What fresh hell is this?  Excuse me?  I must have misheard you.  No caffeine?  Um, yeah, I need some answers here.

Caffeine is a vasoconstrictor, which would be counter-productive to all the work we’re doing to keep the blood flowing while I’m burning up under the Warm-Air Blanket from Hell.  Unfortunately, this restriction will continue for 6 weeks as we continue to work to preserve circulation to the flap.  

I haven’t eaten in two days, and I’m on enough paid meds that the caffeine headaches are controlled.  I just don’t frickin’ care at this point.  

I order chicken consumme, which tastes like diamonds dipped in gold and rolled in glitter.  I think I might have cried just a little as the clear liquid passes over my dry throat and warms my insides all the way down to my belly.  Heaven!!

The next couple of days move quickly and I continue my journey towards normalcy.  Saturday evening I'm finally freed from the hellish warming blanket.  On Sunday I’m allowed to eat REAL FOOD, and I get up and walk three times, each a little farther than before.  Always at my side, Ken walks with me, encouraging me to be gentle and patient with myself.  My mind is ready to run a marathon, although my body is screaming to sit down.  On Monday I’m released, and we’re on the way home!!  The fresh air feels like love and I turn my face towards the sun like a sunflower seeking out the warming rays.

The next day I take a quick shower, which is far from quick but rather a lesson in patience and restraint.  I can’t twist or bend so as I sit on the shower stool Ken helps wash my back, my feet – pretty much most areas because I just can’t reach anything.  

He stands me up and helps me out of the shower, and I face the mirror for the first time, completely naked.

My body is a battle zone of cuts, scars, bruises, tubes, redness, surgical markers, tape marks.  There is a red line across my lower stomach – the smile has closed – as well as a bloody scab where my belly button has been recreated.  At the end of the abdominal incision are more JP drains.  My tummy is incredibly, shockingly flat, and I run my hand gently over my midsection.  I feel nothing.  All the nerves have been cut so I’m numb from the bottom of my ribs to just below the incision.  Over time, some of the nerve may regenerate and sensation may return, but there is no guarantee.

Lucy bears the worst of this war, two lumpectomy scars still present, other small scars from needle placements.  My nipple is gone.  It’s just – not there, even though the rest of my breast looks exactly the same.  In its place, a thin red line circles a very white piece of flesh from my lower belly.  This breast is incredibly swollen, having endured an unprecedented assault, and I’ve been assured the swelling will decrease in the next few weeks.  Comparatively, Ethel looks small and sad, as though she wasn’t invited to the party.  The long, flexible tubing of the JP drain emerges from Lucy, just under my arm, and is sutured to the tender skin.

My breast doesn’t feel any different than before surgery.  I don’t feel as though there’s something on my chest or in the breast tissue.  I reach up to cup the underside of my breast and it’s warm and firm.  It’s so surprising to me that it feels normal.

Lucy is gone, yet she’s still here.  She’s not quite the same, but that’s the nature of cancer – nothing’s ever really “the same”.   The external scars are a visual reminder of the internal battle that I’ve waged for almost five years, and I’m both horrified and pleased with what I see in the mirror.  I know that this is the beginning of the healing process, but seeing so much damage spread across my body makes me sad.

It’ll just take some getting used to.

I lay my right hand gently across Lucy, and my left hand delicately across my belly, and send them both positive energy and healing light.  They've been through hell and back to help make me feel whole again, and I am ever gratful for their sacrifices.  

No matter how you look, girl, you'll always be Lucy to me.