Part 10: A Really Big Party… and Beyond!

Something has changed within me; Something is not the same; I’m through with playing by the rules of someone else’s game; Too late for second guessing; Too late to go back to sleep; It’s time to trust my instincts; Close my eyes:  and leap!

~ ‘Defying Gravity’ sung by Elphaba, Wicked

I noticed right after the surgery, while still at HUP even, that every so often my heart would start beating really fast.  It could happen when I was sitting on the couch watching a movie or when I bent over to pick something up off the floor.  There was no rhyme or reason to it.  I would be ticking away normally for much of the day and then when I lay down to go to sleep at night – BOOM!  I’d be racing away.

Finally I went to my family doctor in March.  I explained to her what I had been through and she referred me to a Cardiologist.  “Oh Christ”, I thought, “Here we go again.”  They made me wear a Holter Monitor for 48 hours.  A Holter Monitor is a very sexy, bulky machine with electrodes and wires that are stuck to you in order to track your heart rhythm.  After the 2 days I returned it.  My doctor called me on March 17th, 2009 to tell me I had been diagnosed with Supra Ventricular Tachycardia – a rapid heartbeat for laymen.  (It was also the day my bff, Heather, had her twins! So this ended up being a very good day after all.)  A normal heartbeat is around 80 beats per minute.  Mine, when the SVT reared its ugly head, clocked in at 168.  ACES!  It was hypothesized that my Vagus nerve (the one that controls involuntary organ function) may have been nicked when the chest tube was yanked out of my thorax.  Thankfully, there’s a medication for that – Inderal.  One a day keeps the irregular beat away.

I invited everyone I knew to my ‘It’s Not A Tumor’ party in May.  Family, friends and co-workers all showed up to help me celebrate not having cancer.  I held the whole story pretty close to me and didn’t divulge most of the nitty-gritty details to too many people.  I was kind of bored by it all and really, they just needed to know the story had a happy outcome.

I prepped for weeks ahead of time.  Bought all the paper products necessary… prepared any food I could to freeze until that Saturday… cleaned my house to a sparking shine.  I’ve had big parties before, but I was really excited to host this one.  It was like a rebirth for me.  Mother Nature cooperated and the sun shone gloriously; the sky as blue as it could be.  Over 100 people came to my house that day – they brought champagne and chocolate and vintage bottles of wine.  Oh, they know me so well!  I shook hands and kissed babies.  We took a group picture and it is awesome – one of my favorites ever.  I can’t get everyone’s permission to post it on this blog though, so here’s my artistic license in stick-figure format:

stick figures

On July 10th, 2009 Dr. Kucharczuk gave me the all clear.  No new growth was detected in my final CT Scan.

It’s been 3-and-a-half years since my ‘mass’ ordeal.  I still need the Inderal every now and then – probably once every 2 weeks.  I consider it a small trade-off.  Also, I still have very little feeling in lower part of my right boob and along the incision line.  The best description I can come up with is that it’s kind of rubbery feeling on the inside when touched.  Good news is the scar has shrunk considerably.  Part of this is due to time, part of it is due to losing weight.  Here’s what it looks like now:

Me & Tommy Lee

The losing weight part I attribute to the promise I made to myself the eve of surgery.  I was so OVER feeling badly about myself that I took this second chance seriously.  I now work out approximately 5 days a week.  Some days I run and do push ups.  Others I do the Tony Horton (a.k.a. The Devil) P90X work out.  (He is an asshole for putting this program together, by the way.)  Last month I even got to realize one of the items on my bucket list and taught an aerobics class (Zumba) for 2 weeks while my instructor went on vacation.  I’ve lost about 20 pounds since surgery and am maintaining it well.  I’ll fluctuate a few pounds here and there, but I wear a size 4 or 6 (depending on the cut) and that is just fine with me.

I no longer accept what is doled out to me.  Rather, I ask for what I want and anticipate that is what I will get.  I don’t just go through the motions I am expected to go through because that’s the way it has always been.  Case in point… I recently switched OB/GYNs.  This is because the old OBG told me I have endometrial fibroids and need surgery to have them removed.  I wasn’t so sure about part of it and was questioning her about it.  She kind of dismissed my questions and acted like a pushy twat (pun intended) insisting I schedule the surgery right away.  I booked a consultation/paperwork appointment, but was uneasy about the way she treated me.  So after thinking about it for a few days I talked to Heather to find out if she likes her lady garden* inspector.  She said she absolutely loves him.  So I called the pushy twat’s office and said, “I will be changing offices and would like my records for my new OBG.  How do I go about getting those?”  I could have lied and said I was moving to another state/country/planet and I didn’t know who I would be seeing in the future so could I please just get a copy and not let you know how I really feel.  That’s what I would have done before November 2008.  Not anymore.  She can suck it now!  (Not literally – I like men too much.)

Yes, I still have my moments (it’s difficult for me to believe compliments about my physical self), but I find I’m more accepting of those every day.  For the first time in my life I feel healthy – mentally and physically.  It might have been this experience, it might have been turning 40… maybe a combination of both.  Who knows?  The important thing is that it happened.  Sure, I’m no Angelina Jolie, but I am who I am.  And who I am is a determined, confident, sometimes impatient, fastidious, decisive (with lapses of indecisiveness about really big issues), standoff-ish and guarded (until I feel a person can handle my true personality then I’m very loud, obnoxious and friendly), snobby (about certain things), smart, pretty girl who doesn’t look too bad for being over 40.  And is funny as shit (that’s the really important one – at least to me).

I actually like having turned 40.  At first I wasn’t so sure about it, but could care less now.  Besides, what am I going to do about getting older?  Stop it? Lament over it?  That’s no fun.  And I am all about having fun.  So why not embrace it?  Now that I am more accepting of who I am, I don’t have to question every word I utter or every move I make.  That I own my choices and I don’t care if someone else likes them or not because they are MINE.  If I didn’t have this health crisis experience, I don’t think my attitude toward this milestone birthday would have been the same.

While sitting in that hospital that first time I was told I had “a mass the size of your heart behind your heart”, I got really afraid.  Not just for the immediate situation that lay ahead of me, but for not having lived my life fully.  That was my biggest fearthat I had wasted it and the time had just evaporated.  That this was as good as it gets.  Yes, I had a great family and job and friends, but was I really living my life to the utmost extent?  Was I happy settling for being uncomfortable in my own skin?  Was I happy swallowing every true feeling I had?  Was I happy bowing to others because I was expected to be polite?  Was I happy maintaining the status quo and not growing and developing as a human being?

Nope.

For me, these questions are answered with determination and humor now.  I am determined to not feel poorly about myself anymore and to not allow other people to make me feel that way either.  So I work hard at keeping my body and mind healthy.  I like who I am now and I think other people do too.  If not, I don’t need to have them in my life.  And sure, I take things seriously.  At my core I’m a Type-A perfectionist, after all.  But I’ve realized that once I allow things to get serious, they become too real.  Humor stops it from being so real.  I try to put this into practice every day.  To practice loving myself and seeing the silver lining.  To practice having high energy and laughing at most things in life.  To practice being the best person I want to be.  And though I do not believe that practice makes anything perfect, I do believe it can make anything practical.  That if I am realistic with my expectations of myself and make certain they are useful, I can be the person I want to be; not some lofty ideal I can’t possibly live up to.  I find I often look for what I can change about myself to become who I feel I have evolved into.  Admittedly, I don’t act on every impulse I have – it’s gonna take me a long time to change the really big stuff.  It’s a work in progress and will continue to be for the rest of my life.

Many of my life’s goals that flashed before my eyes when the E.R. doctor told me I had some unknown glob behind my heart have come to fruition.  We did go to the Grand Canyon in July 2010; we drove across the American West for nearly a month in July 2011; I started writing this blog in January 2012 and have begun sketching an outline for a book; I’m considering getting certified to teach aerobics.  I even had very tasteful pictures done by famed “erotic photographer” Scott Church (yes, his work is pornographic, but it truly is art). 

Here’s how I feel about myself now…

Stronger

And so that is why I decided to write about parties.  Sure they can be a lot of work, but the ends justify the means.  And who doesn’t want to be surrounded with people they love and who love them in return while celebrating every little thing life throws at you?  Time passes at lightning speed. Who knows how long you’ve got?  You can let it get you down or you can grab it by the balls and take it for what it’s worth to you.  For me, no way am I merely going to survive it.  I’m going to make it count.  My life is now focused on seizing every opportunity I am given and having fun with it while loving myself – imperfect parts and all.  And if an opportunity I’m looking for doesn’t present itself, you can be damn sure I’m gonna seek it out.  DO EVERYTHING!  That’s my new Modus Operandi. 

And there ain’t nothin’ I can’t do.


*I did not come up with the term “lady garden”. That honor is reserved for Jenny Lawson, “The Bloggess”, who is awesome and should be worshipped by all people, animals, aliens and zombies. You MUST read her blog… The Bloggess.
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Part 9: Home Again, Home Again, Jiggity Jig

The couch became my new best friend.  I spent most waking moments, and all sleeping moments, on it.  Emma hated me sleeping in the living room.  It was a reminder to her that I still wasn’t “normal” (if she only knew!) and every day she asked if I would be sleeping in bed that night.  Truth was I could not lay in bed; the incision affected all of the muscles in my upper body and my abs were unable to contract enough to lift me.  I couldn’t even roll over onto my tummy.  Besides, my shoulder was still throbbing and I could not use my right arm to push myself up off the bed.  So… sofa city it was, baby.  I actually liked it.  I didn’t feel as though I would disturb Charlie and the sofa engulfed me; kind of like being in utero.  And if the Vicodin wore off and the pain woke me up I would be able to flip on the tv until another pill took effect and I got sleepy again.

On a side note, I don’t know how people people get hooked on prescription meds – ugghh – they make me so nauseous.

Anyhoo, the major bonus to sleeping on the couch was that the angle of it allowed me to prop myself up so I could easily stand up all by myself and walk to the potty, like a big girl.

A week after the surgery I was finally allowed to shower.  I am NOT the type of girl to forgo a shower for a single day, let alone a week.  Truth be told, I often rinse off twice a day – in the morning before work and in the afternoon after working out.  So this ‘not being permitted to bathe’ shit was messing with my girlie-ness.  I was dying to get clean.  To let the water wash away the hospital smell from my skin.  To send the memory of alien abductions and I.V.s and having my heart stopped down the drain.  Dr. Kucharczuk’s orders indicated I could remove the bandages and let the water contact the incision site and the chest tube site one week post op.  Although I could move around just fine (actually much better than expected), I still needed a little help with the bandages.

Now, it is important for you to know that Charlie is not good with medical stuff.  He nearly passed out when we were in childbirth classes and again when Emma was being born.  He can’t stand blood or poop or vomit.  He’s not going to look at the stitches in your hand or watch endless replays of Theismann getting his leg broken by LT.  So I knew it was a big deal for him when he volunteered to help me with the bandage. 

The protection over the chest tube site was easy enough for me to remove on my own.  I peeled the gauze away from my skin to reveal what, I thought, was a disgusting gash (and I hate the word ‘gash’ because it makes me think of, what I imagine would be, nasty vagina).  The wound was an open and weeping.  It reminded me of a muppet’s mouth – like freakin’ Beaker.  It gave me the willies and I had to fight the urge to cover it up again right away.

"Meep-meep-meep-meep-meep-meep."  
Translation: "I'll kill you in your sleep."

I started the water for the shower and Charlie came into the bathroom to help with the bigger bandage.  Gently, he began to peel away the tape and gauze from my body.  He gasped out loud and I thought I might need to catch him.  He steadied himself and muttered, “Jesus Christ.”  His face turned pale and he stood to my side with his mouth agape.  (Remember, neither he nor I knew how big the incision was until this point.  We were both still under the impression that it would be 5 inches at the most.  Apparently even the very best doctors do not concern themselves with such cosmetic absurdities.  They just do their job and forget about your vanity or shallowness.)

I spun around to look in the mirror.  Frankenstein stared back at me.  Although the surgical team did a supurb job with the suture, it was immense.  I was horrified!  Without taking my eyes off the mirror I instructed Charlie to turn off the water running from the shower head.  I needed time to inspect this shit.  Beginning at the side edge of my right boob it snaked across my back to within 2 inches from my spine.  I told Charlie to go get my flexible sewing ruler.  Normally I would have asked him politely to retrieve it for me.  I had no ability to be polite in that moment.

It was so red and angry looking.  So U.G.L.Y.  It folded over onto itself.  My body was still swollen from the invasion, so the entire area was puffy too.  It was hard to believe it was my skin making this grotesque line across my back.  I stood blinking at it for the better part of a full two minutes before Charlie came back with the tape measure.  I made him hold the tape up to it.  That’s when I found out that I had been quartered; that it had taken Dr. Kucharczuk an entire foot of cutting to get the cyst out of me. Charlie had enough and left the room.  Standing there, looking in that same mirror again, I could have easily sunk into a depression.  Easily dropped back into my familiar habit of feeling sorry for myself over this new abhorrent piece of me.  But I thought back to the night before surgery and the vow I made to myself.  To love myself – “ugly” parts and all.  So instead, I shook it off -there was nothing to be done about it now.  Why lament over it?  I simply had to accept it.  And that is what I did.  ‘It rubs the lotion on its skin’ was not lost on me and made me giggle.  Finally, after what seemed like an eternity, my sense of humor kicked back in.  It felt good.  It occurred to me that it would be funny to name my scar.  Maybe Slytheryn or The Incredible Hulk.  Hmmmmm…those were ok, but this needed something bigger than life itself.  Something with *panache*, but suitable at the same time.  In the end, I decided to call my long, red, engorged, ugly, enormous scar ‘Tommy Lee’.  Flamboyant, but befitting.  And it was funny.

My scar's namesake.  I'm so proud.

Christmas was a little tough.  As I said before, the meds made me very sick and sleepy.  An invasive surgery like this leaves a person weak and my energy was easily zapped.  I had some visitors over the holidays who understood my plight and stayed for about an hour or so before giving me a kiss (I couldn’t be hugged!) and saying good-bye. 

These people are friends. 

I had other visitors who were completely fucking clueless and thought they should stay for hours on end without giving a rats ass about my compromised state. 

These people are family. 

To make matters worse I felt as though I had to entertain them.  “Can I get you something to drink?”  Thankfully, Charlie  intercepted the pass and did it for me.  After plastering a phoney-baloney smile on my face for about 5 hours Christmas night (I reminded myself of The Joker), I had enough at 10 pm and went to bed.  This was the first night I attempted to sleep in bed and it SUCKED.  I still couldn’t use my abs or roll over.  I had to wake Charlie at dawn to help me up in order to go pee.  We did laugh about it though because the similarity between me and the little brother rolling around in the snow in A Christmas Story was striking. 

Over the next 2 months of recouperating at home I started getting stronger.  Believe it or not, I rehabed my shoulder by painting Emma’s room, ceiling and all.  I thought it would be good for the range of motion.  It took me 3 times as long as it normally would have, but I did it and the room looked fabulous.  2 bright pink walls, 2 bright tangerine walls – perfect for a tween girl.  

It was during this time at home that I began to sense a change in who I was.  I also began thinking about how this was a perfect reason to have a really big party.

Stay tuned for Part 10, in a few days…

Images *borrowed* from: Beaker pic – The Muppet Mindset.blogspot.com; Tommy Lee pic – Dr. Dot.blog-city.com; Randy pic – Fan Pop.com

Part 8: Recovery

I regained consciousness as I was being lifted from the surgical gurney onto my ICU hospital bed.  There were a lot of nurses around me, but my eyes were still taped down so I couldn’t see how many.  My throat was sore from being intubated and I was only able to feebly whisper two words: “Where’s Charlie?”

The nurses were so sweet.  One of them said to me, “We need to make you look beautiful again first honey.  He’ll be allowed to come in soon.”  She removed the tape from my eyes and wiped them clean with a warm cloth.  I opened them and saw the time on the clock across from the bed – 7:37 pm.  12 hours since we left home.  8 hours since I was taken by aliens.  Was Charlie even still there?  I thought about how he would be beside himself that he wasn’t already home to take care of Emma.

Then I became aware of my body.  I looked at both of my hands – there were 3 I.V.s in the right and 3 in the left.  At least that’s what I thought I saw.  I cannot imagine what medical reason this would have served – maybe I was hallucinating.  Who knows?  The incision site was sore, but not as bad as you would have thought.  I supposed because all of those nerves had been cut.  The chest tube was uncomfortable and icky (yes, that is the technical term), but not unbearable.  The catheter was gross in general and I tried not to think about it.  I didn’t have to concentrate too hard either because of the white-hot searing pain ripping through my right shoulder.  Having my arm propped in an unnatural position across my body for 4-and-a-half hours left those muscles in shreds.  I could hardly move it.  I am very right hand dominant and tried to scoot myself up more on the bed with my elbow.  Bad idea.  Not only could I not support my own weight, it sent a jolt of acute agony through my entire upper right side.  It took my breath away and I gasped; my eyes bugged out of my head.  A nurse noticed my discomfort and brought me a hot pack to ease the pain.  If I could have moved I would have hugged her.

Charlie had been called and was waiting in the hall while they cleaned me up.  I remember him walking around to the left side of the bed and brushing my hair off my forehead. “How’d I do?”  He said I did just fine and that Dr. Kucharczuk told him it was the second largest cyst he had ever operated on.  That it had been infected at some point in my life and that is why it had adhered to my internal organs.  That removing it was like peeling sunburnt skin.  For someone who had just been unconscious for 8 hours I was dreadfully tired.  My eyelids were so heavy.  Charlie left and I went back to sleep.

I woke up around 11 pm.  A nurse was sitting in a chair to the left side of my bed reviewing some charts while monitoring me.  She had set up a floor lamp up facing her in order to not allow the bright lights to disturb me.  She looked over the top of her glasses at me, smiled and said, “Hi sweetheart.  How ya feeling?”  “Tired” I told her, “I’m so tired and my shoulder is killing me.”  She nodded and said that was normal; that I had been through one heck of a surgery.  I drifted back to sleep.

I woke early on Tuesday morning, around 5.  I was wired; wide-freakin’-awake.  The nurse was gone so I turned on the tv and watched the news for about five minutes.  Apparently there isn’t a huge audience at 5 am so there was nothing else on worth watching.  I sat there wondering if this is what it was going to be like for the next 3 days.  “Shoot me now”, I thought.  The pain in my shoulder was excrutiating.  I clicked the buzzer for the nurse.  To my chagrin there was a new one tending to me; she was fine, but not as warm and fuzzy as the one from overnight.  I asked her for a hot pack for my aching shoulder and she left to get one.  I took note that my speech was slurred.  When she returned she instructed me on how to use the Morphine button.   I suddenly became very aware of the tape on my back holding the epidural in place.  Bleeccckkk.  She left the room and I immediately began clicking the button incessantly despite knowing that only so much would be distributed at a time.  I had been up for a whole 10 minutes.  Then I passed out until rounds started.

Dr. Kucharczuk, his surgical assistants and about 5 gazillion interns came in to see me around 8:30 am.  He asked how I was doing.  I smiled and said, “Sleepy.”  He assured me this was normal, checked the receptacle the chest tube emptied into and moved on.  I tried to stay awake, but it was impossible.  Next thing I know the nurses are in my room at noon to give me a shot of Lovenox in my tummy (that really made my butthole clench) and get me to sit up in a chair.  The shot hurt like a bee sting and i wiggled around at the thought of it.  The nurse sat me up and hesitantly, I moved the 3 feet to get up off the bed and into the highback chair.  I fell asleep almost as soon as I sat down.  At 12:30 a woman was standing at the armrest saying, “Mrs. Newlin? I’m blah-blah, the physical therapist.  We need to get you up walking today.”  But I was so damn sleepy.  “No way” I said to her, “I’ll never make it.”  I noticed again that my speech was slurred.  She looked at me incrediously and got pissed.  She reiterated that this was a very necessary part of recovery, put one hand on her hip and chastised, “You need to get up and moving.”  I very firmly told her I was not going to walk today.  That I couldn’t do it.  That I feared falling, even with the walker she had brought along.  Her face flushed red with anger and said something like, “Well, I WILL be back tomorrow and you WILL walk then!”  She turned on her heel and bolted.  “Lick balls, bitch” I thought, “You’re not the boss of me” and promptly fell back to sleep.  I stayed in my sleep coma for the next 5 hours.  A nurse helped me move back to bed and right after Charlie and Emma walked through the door.  Poor Emma gasped at the sight of me.  “Oh Mom” she said.  But I could barely stay alert.  They drove an hour-and-a-half to see me and stayed for about 10 minutes.  I just couldn’t stay awake.  Oh the guilt!

Don't be confused.  This isn't me.  
I know it's hard to tell the difference.

The next day they finally figured out that my meds were too high.  Imagine that.  I don’t take ANY medication and my tolerance is extremely low.  With the medication adjusted I was able to stay awake like a normal human being.  The physical therapist came back with a chip on her shoulder.  I looked her right in the face and said, “You may want to check my chart.  My meds were too high for me and I could not stay awake yesterday for more than 5 minutes at a stretch.  You may want to listen to a person when they tell you they cannot perform whatever is on your agenda and not get so pissy.  Today is different.  Now give me that walker.”  She actually apologized to me and put the walker (complete with tennis balls on the bottom) in front of me.  She placed the catheter tube, chest tube, my epidural tube and my I.V. tube in the hooks on the sides.  She told me she wanted me to try to circle the floor twice.  I did 7 laps.  “Lick balls, bitch” I thought.

The next 2 days were pretty much the same.  They removed the catheter on Wednesday night.  The chest tube came out on Thursday morning.  That was freaking disgusting.  Dr. Kucharczuk’s assistant and a nurse came in to do it for me.  They removed the stitches and instructed me that I would need to exhale strongly and bear down as they pulled the tube out.  I asked if it would hurt.  “Yes” they confessed.  The nurse held my left limbs down.  The assistant held my right leg down with her right hand and released the clamp with her left.  I felt a pop in my chest.  Then, like a drill sargent, she screamed at me to exhale.  I did and she whipped that tube out of my body with force and purpose!  The wind was knocked out of me; a burning sensation shrieked through my insides; someone kicked me in the balls and I don’t even have balls.  That is what it felt like.  I panted and squeezed the handles on the sides of the bed to regain composure.  As I did the opening oozed fluid down my side.  Gross!

Charlie showed up about an hour later to take me home.  I was released, with one last trip in a wheelchair.  On the ride home I had to recline the seat; the meds induced motion sickness.  I didn’t care though.  We made it home in time to pick Emma up from school.

Stay tuned for Part 9 in a few days…

Part 7: Anatomy 101

Navigating traffic in the Philadelphia area is about as easy as digging a hole in the sidewalk with a plastic spoon.

I was told to be at the HUP Admissions Office by 10 am.  Charlie and I left the house around 7:30.  I took notice that the sun was shining brilliantly despite the air being nippy.  I felt queasy the entire hour-and-forty-five-minutes it took us to get there.  The car ride was quiet and I felt tense.  I kept thinking about whether I would come out of surgery, what the scar would look like if I did and how I would be able to get around once it was over.  I longingly stared at the other drivers on the road drinking their coffee, dying for a sip.  I had to fast and wasn’t permitted any java.  How dare they swig away on their hot cuppa joe!  Bastards.

We checked into the Admissions lounge and waited for about an hour-and-a-half before they called for me and escorted us to the family waiting area.  It was like walking to the guillotine.  Like being in a movie where the action is slowed down to add drama to the scene.  But this wasn’t fiction on a screen.  This shit was real.

The family room was rather institutional looking.  Bright lighting, blue and white walls and an attendant seated at a desk in the middle of the room.  I was happy to see there were informational televisions hanging in each corner near the ceiling.  The tvs listed the name of any patients currently having surgery, the time they started surgery and their status (Ongoing, In Recovery, etc.; I happily noted none of them said ‘Expired’!).  That way Charlie wouldn’t be wondering what was going on the whole time he sat there; he could just look up.  It wasn’t too long before they called me back for prep.  The nurse told Charlie they would allow him back in a few minutes.  I walked with the nurse to my curtained off gurney.  Her eyes were bright and kind; her wavy auburn hair pulled back in a ponytail.  She exhibited signs of being thoroughly concerned with her patient – like introducing herself and asking my name, date of birth and if I had any allergies.  I was relieved she was assigned to me and thought back to that hag from a month ago.  She handed me a gown, surgical booties for my feet and the hottest ever surgical shower cap.  I laughed at myself for the first time in weeks and couldn’t help but to think how great of a story this was going to make someday.

The nurse came back with an I.V. kit.  Fuck.  Why do I always block this part out?  I told her I wasn’t good with needles.  She said she would try my left hand first.  She was skilled in phlebotomy and it wasn’t the worst thing in the world this time.

Charlie was permitted into the room, turned the corner and laughed at my drop dead sexy hat.  He sat there with me for about 25 minutes, trying to make small talk, before they came to get me.  I appreciated his efforts to distract me.  The nurse showed up and told us ‘they’ were ready for me.  She unlocked the gurney and wheeled me toward the anesthesia room.  Charlie walked with me, holding my hand, gave me a kiss and a smile and said, “I’ll see you soon” before the nurse turned my bed into the room on the left.

That was when my alien abduction started.

Well, I wasn’t really abducted by aliens, but I’m sure it was as close as it gets.  The room was bright and cold and there were about 7 people gowned up with masks and gloves and instruments in their claws hands.  It was very loud and I couldn’t focus on what any one of them was saying; just the cacophony of muffled voices.  I think under different circumstances I would have found the scene to be really funny.  Instead, I concentrated on not shitting my hospital gown.  The anesthesia team leader asked me to sit up on a metal table facing her and I did as I was told.  Someone else untied the back of my gown and prepped my spine for the epidural.  I started crying and looked at the Lead in front of me.  “I’m really scared” I whined.  Her crystal clear blue eyes smiled at me and she said, “Honey, you’re going to be alright”.  The needle was placed and drugs started.  I felt myself fall forward and to the right.  The Lead caught me and that was the last conscious thought I had.

Here’s what happened while I was out:

According to the surgical notes, I had an 8 cm Bronchogenic Cyst compressing many of my internal organs.  It had adhered to my esophagus, my right pulmonary artery, the back of my left atrium (one of the heart valves) and “splayed” the back of both my lungs.  I was intubated in the usual and customary manner and placed in the “left lateral decubitus position”, a.k.a. lying on my left side with my right arm propped in the air, like this:

I was catheterized, strapped in place and draped accordingly.  Dr. Kucharczuk made a 1-inch incision through the fifth intercostal space (between my 5th & 6th ribs).  Using electrocautery, he continued to cut through the layers of my muscle until he could get into my chest cavity.  Retractors were put in place to hold the incision open while he removed the cyst.  He identified the cyst and, for an hour, attempted to dissect it from the organs and vessels it had molded to.  He couldn’t.  At least not with a moving target.  The decision was made to put me on a cardiopulmonary bypass machine. CPB for short.  This means he, a Cardiologist and their surgical assistants hooked up tubes called cannula to both the superior and inferior veins around my heart and lungs to take over their function.  The CPB would keep oxygenated blood flowing through my body while bypassing those two organs.  He couldn’t do it through a 1-inch incision though.  It took 12.  A whole foot.  Once the cutting was done, they held me open with rib-spreaders.  My chest cavity was pumped with air to prevent infection.  The cannulae were attached.  In order to prevent brain damage, hypothermia was introduced – my body temperature was dropped to 84.2ºF by cooling the blood passing through the CPB machine.  My lungs were deflated.  Another tube was hooked up to my heart and a potassium solution was flushed into it in order to prevent it from beating.   With my heart and lungs stopped, he was able to remove 95% of the cyst from inside my body.  He had to leave 5% intact because it was inseparable from the back of my pulmonary artery.  My body temperature was returned to normal, the cannulae removed, my heart restarted and my lungs inflated.  Slowly, my body resumed its proper function in sustaining my life.  They irrigated my chest cavity and a second, stab incision was made on my right front side to accommodate a chest tube.  With this tube secured to ensure no fluid would accrue within the surgical space I was sutured.

What was originally thought to take 45 minutes and involve a 5-inch maximum scar became a four-and-a-half hour ordeal and left my upper body quartered.

Stay tuned for Part 8 in a few days…

Part 6: Acceptance

Monday, December 15, 2008.  That was the day we scheduled surgery.  I set the date during my pre-admission testing at HUP on December 5th.  Dr. Kucharczuk told me the procedure should take about 45 minutes, the incision would be anywhere from 1-inch to 5-inches at the most and that I may lose all feeling in my right breast.

In the 4-and-a-half weeks leading up to the 15th I busted my ass like never before to make sure things were ready at work and home:  Transferred all my studies to a wonderfully competent colleague, took my family to Disney World, shopped for, purchased and wrapped Christmas presents, decorated for Christmas, made a ton of Christmas cookies (to be frozen until needed), cleaned the house and made about 15 meals and froze them as well so all Charlie would need to do was thaw them out while I was recovering.  I wanted Christmas to be as normal as possible for Emma.  I had no idea what kind of condition I would be in after surgery.  If I had to sacrifice sleep to make sure it didn’t impact her, so be it.

Image courtesy of alijabbar.deviantart.com

Is that a Whirling Dervish, you ask?  
No, it's how I looked, 
trying to get all the pre-surgery shit done around my house.

The week before surgery I wrote an email to co-workers and friends and family.  I hope I didn’t come off as a bitch – I’m just very sensitive about certain things and being visited in the hospital is one of them.  The message went something like this:

 

To: The entire world

From: Newlinator

Subject: A Date Which Will Live in Infamy

Date: December 7, 2008

Time: 9:46 pm 

Hi Everyone,

Thank you all for your support over the last several weeks.  It has meant a lot to me.  I appreciate all of your thoughts and prayers.  I do have one favor to ask though.  I don’t know how to put this, so I’m just going to say it – Please do not visit me in the hospital.  I will be drugged and catheterized and ugly.  I will be happy to see you once I’m home and can wear makeup.  Wish me luck. 

Love bunches!

Jen

 

I thought I was clever with the subject line because I sent it on December 7th.

Things were as normal as possible on the 14th (a.k.a., Surgery Eve).  My sister had driven 30 hours from Texas to Pennsylvania to stay with Emma while I was being operated on.  We all had dinner together that evening and it was pretty uneventful.  Emma was having fun entertaining my 2-and-a-half-year-old nephew and he was having a blast with her.  But things went south when it was time for her to go to sleep. 

She got herself together and climbed into bed.  I leaned over to kiss her goodnight and she put her little arms around my neck and started crying.  I began to cry too and she sobbed even harder.  I sat on the edge of the bed for a few minutes holding her hands and kissing her tears away before I realized that just wasn’t going to do.  I pulled her covers back and lay down next to her.  She wrapped herself around me and I held her tightly.  With her head on my chest I played with her hair and traced the contours of her beautiful face while she wept.  She was so scared.  I tried to think of something reassuring to say to her.  The only words I could come up with were, “I’m going to kick this thing’s butt.  You don’t have to worry about it, honey.  I’m stronger that it is.”  We stayed there like that for nearly 90 minutes.  She finally fell asleep and I got up to go to bed myself.

I went into the bathroom and started my normal routine… washing my face, brushing my teeth, removing my contacts, blah, blah, blah.  Then I did something I never would have ever dreamed of doing before.  I took my shirt off and examined my naked torso in the mirror.  It hadn’t occurred to me that, before that moment, I had never really looked at myself.  I avoided my own reflection; desperately trying not to see the emotional scars of a ridiculed childhood and how they manifested themselves on my psyche.  I had always been incredibly self-conscious of my little boobies and considered myself chubby.  Had always been embarrassed of my shape.  If I didn’t look at myself I could avoid the cycle of self-loathing that subsequently followed:  Why couldn’t I be more disciplined with my workouts?  Why did I have to love chocolate so much?  Why was my ass so big?  Why couldn’t I look like xyz movie star/supermodel/singer?  Why was I never good enough?

Standing there looking at myself I realized there wasn’t a mark on my body.  It was perfect just as it was.  All my scars were contained on the inside.  And tomorrow, I was possibly going to have a 5-inch incision mark on the outside.  I only had 10 hours to appreciate my flawless self; and 8 of them were going to spent asleep.  What had I done with all that time in my life?  Why the hell had I spent so much energy comparing myself to an impossible (phony) image?  I felt cheated.  I had robbed myself of dignity and self-acceptance for so many years.  For what?  For who?  I could feel myself sinking fast; sinking into hating me.  Again.  

I don’t know why, but something unexpected happened.  Something in my brain switched on.  I grabbed a ledge and saved myself.  There was nothing wrong with me!  I was done with exerting all the mental energy it took to doubt myself.

Much like the revelation The Grinch had when the Whos in Whoville started singing on Christmas morning despite the lack of decorations and presents, my heart, too, grew 3 times that day.  It grew for the little girl inside me – Jenny, who was scared to death of her father and believed all of the awful, rotten things he said to her.  It grew for the adolescent inside me – Jennifer, who was teased by peers for being awkward and ugly and who valued their opinion more than her own.  It grew for the woman inside me – Jen, who was fed up with thinking she was not good enough.  I stood there viewing my reflection for a long time.  I promised myself, ‘No more’.  Promised to stop finding myself repugnant; to never feel that way again.  To love myself regardless of the “imperfections” I can’t change; regardless of what society or history has told me that I am.  I exhaled, turned off the light and went to bed.

I slept well that night.

Stay tuned for Part 7 in a few days…

Part 5: Dr. John Kucharczuk

Thankfully, I only had to be under the watchful eye of the Nurse Douchebag for about 5 1/2 hours.  The shift changed at 7 am and I no longer had to wonder whether or not she would stab me to death in my sleep.

On a serious note, let me say this – If you ever have an unexplained illness, go to the Hospital of the University of Pennsylvania.  Their diagnostic equipment is more sophisticated, and far superior, to that of any rinky-dink-hospital-down-the-street-from-your-house.  Remember, I was admitted around 1 am.  By 9 am I had the following tests completed (again)…

X-Rays

CT Scan

Ultrasound

MRI

And I met my new hero.

He didn’t just walk into my room, he strutted.  Not like John Travolta in Saturday Night Fever or anything, but like a man who was utterly confident.  Not cocky; just confident.  He looked like he was on his way to a business meeting.  He was dressed in a navy blue suit, white button down oxford and maroon colored tie.  He was balding and had wire-rimmed glasses perched on the bridge of his nose.  He smiled kindly at me.  I was sitting Indian style at the head of my bed and he motioned to the foot of the bed and asked if he could sit down.  Amazingly, I didn’t get the sinking feeling in my stomach this time.  He held his hand out to shake mine and said, “I’m John Kucharczuk and I will be your doctor if that’s ok with you”.  His skin was warm and soft – a surgeon’s hand.  I nodded my head in agreement.  He proceeded.  “I’ve reviewed all of your tests.  I can tell you for sure that the growth in your chest is a Bronchogenic Cyst, not a tumor.  It is very large and rather rare; I only see about 15 cases a year.  There are only about 20 cases diagnosed in the country annually.  It’s a congenital condition, meaning you were born with it, and it’s finally grown to the point where it is bothering you.  The good news is it can be taken care of surgically and you probably will never have to think about it again.  They don’t usually grow back.  The bad news is you are going to have to have surgery.  It’s not something that can be taken care of with medication.  My plan is to go in through your side, under your arm, between your ribs.  Is this ok with you?”

It wasn’t cancer.

I no longer had to contemplate chemo or radiation or my hair falling out or being frail or leaving Emma and Charlie alone.

It wasn’t cancer!

I bounced up onto my knees, threw my head back and punched the air over my head with both fists.  I put my hands on my thighs and leaned in toward him a little and yelled,  “HELL YEAH THAT’S OK WITH ME!”  He laughed out loud and then explained the next steps.  His assistant would be in to see me in a few minutes to have me sign some papers.  I would have to schedule pre-admission testing and set the date for surgery.  I asked him if I could still go on the family vacation I had planned coming up in 2 weeks.  We were taking my parents and my sister and her family to Disney World.  He told me to go have a good time, but not to get on any of the thrill rides.  No problem, Doc, no problem.  He said I should be able to be released in the next couple of hours.  I inquired if I could “get this stupid needle out of my hand”.  He gave me a shit-eating grin and said he would send a nurse in.  I think he knew about my comment the night before.

 

BEST. DOCTOR. EVER.

15 minutes later Charlie walked in.  He was rigid and had dark circles under his eyes.  I was sitting on the edge of the bed dangling my feet over the side and bouncing up and down like a little kid.  I blurted out, “I’ve already had test done and seen the doctor.  He says it’s just this cyst thing and I’ll have to have surgery, but IT’S NOT A TUMOR!”

And for the second time in 15 years I saw my husband cry.  I can’t say he collapsed – Charlie is not that dramatic.  It was more like he melted.  The stress, the unknowing, the questions – they all melted off of him.  He wrapped his arms around me and buried his head in my neck, exhaled and cried.  He held me like that for 2 minutes.  He put his hands on my face and kissed my cheeks, my forehead, my nose, my ears, my mouth.  I was crying too, but they were happy tears this time.  Still made my face red and blotchy though, damn it.

With the tension out of the room we sat talking about the last 12 hours.  I omitted telling him about the vulgar comment to the nurse – he is far more polite than I and I was embarrassed by it at this point.  An hour later a new nurse came in and removed my I.V.  Not 15 minutes later, Dr. Kucharczuk’s assistant entered the room, scheduled me for pre-admission stuff on December 5th and told me I could leave.  I still only had my yoga pants and hospital gown to wear, but I left that hospital feeling like a million bucks.  And I did so without a wheelchair; WALKING on my own 2 feet.

Stay tuned for Part 6 in a few days…

Part 4: If I Never Ride In An Ambulance Again It Will Be Too Soon

I was pissed with how long it was taking for the ambulance to be available to get me to HUP.  Why on earth I wasn’t allowed to just drive there myself was beyond me.  Didn’t they want the vehicle to be in the area for a REAL emergency?  I kept thinking “I don’t have a time bomb in my body, just some mysterious growth.”  What was all the fuss about?!?!

FINALLY at 11:30 pm, nearly 7 hours after the Thoracic Surgeon informed me of the transfer, I was told they would soon be ready and to gather my things.  They removed my I.V. (thank God!) and had me sign some papers.  It was at this point I realized I didn’t have a bra or a sweater or a coat or anything practical like that (D’oh!).   What I did have were the yoga pants I was wearing, my smokin’ hot hospital gown, sneakers and makeup.  Of course, the most important item being the makeup (I’m not about to scare people).  A very young ambulance driver sauntered into my room with yet another wheelchair and introduced himself to me.  He informed me it was very cold outside and that I should bring several blankets to keep warm with.  Begrudgingly, I obliged – I looked homeless.

He wheeled me through the corridors of the building, through the emergency department and out the door.  The cold and the wind smacked me in the face as if I was their bitch.  I tightened my vagabond blankets around me.  Then, he opened the back of the ambulance and started letting down the ramp.  “Hold on a second” I said to him, “I have to sit in this chair in the back?  Even with the brakes on isn’t that a little dangerous?”  He replied that he would strap the chair down to the floor to secure it.  Really???  With all the common-sense-tone I could muster I looked him in the eye and said, “Listen.  I am relatively healthy.  Up until yesterday I was functioning just fine on my own.  I don’t know why I have to ride in a wheelchair or an ambulance or do anything but walk into PENN.  Can I please just sit up front like a normal human being?”  To my surprise he acquiesced.  Pleased with my assertiveness I climbed into the front.

He started the engine and I fastened my seatbelt.  Politely, I asked him how long he had been an EMT.

Two weeks.  Two whole weeks.

He set the GPS and navigated the vehicle onto the highway.  That is when he exercised the right to abuse his authority and found the accelerator.  We’re talking Mach-5, Warp Speed, Concord-esque velocity.  I knew he thought he had to get me there fast, but Christ Almighty!  It was like I was having a goddamn face-lift!  The chains and other equipment in the back of the vehicle were clanging together every time we hit the smallest bump in the road.  I tried to make small talk with him.  I asked about family, sports, work, anything to get him to slow down.  My hope being he would relax a little when he realized I wasn’t an emergency case.  No go.  He continued to barrel down the road like HIS life depended on it.  I looked at the dash – 95 miles per hour!  Apparently he had somewhere to be later.

The irony of the situation struck me as funny – I was either going to die from this thing inside my body or I was going to die at the hands of Mr. Indy-500-Ambulance-Driver.  I started laughing hard and grabbed the Jesus Handle to hold on for dear life.  He gave me an inquisitive look.  I ignored him.

And then it happened.

The highway was about to split.  I knew which direction was correct to get to HUP because a family member had been there a few years before; Boy Wonder had no clue.  I asked him if he was going to take this exit.  He stared at the GPS (not at the road!) all while still hurdling us through space and time.  It was as though he had a genetic disease preventing him from being aware of the well-being of his patient.  I think the technical name is ‘Kiss-Your-Ass-Goodbye Syndrome’.  He was befuddled because the GPS was telling him to go another way.  At last, I couldn’t take it anymore and…

LOST

MY

SHIT.

I started yelling at him, “TAKETHEEXITTOTHERIGHT!!!”   He pointed at the GPS and I freaked, “DO IT NOW!”  I was frothing at the mouth and breathing erratically.  I couldn’t take being trapped in this death mobile with him for a minute longer than necessary.  Keep me cooped up for 2 days, feeling out of control and fearful for my future, and that is what happens: the total bitch side of my personality emerges.  She doesn’t appear often, but when she does, look out.  I know I was cursing and criticizing him for driving like “Bo-fucking-Duke”.  If memory serves me correctly I even asked him if Boss Hogg was his partner.  Inappropriate, yes, but for cryin’ out loud – enough was enough!  I wish I could go back to that moment now.  I bet it would be pretty funny to watch.

 

See Luke looking at the speedometer? That's how I looked.

He cut a sedan off, but managed to make it to the exit ramp without flipping us over the guard rail.  At the stop sign I told him to make the right and a quick left.  Then guess what?  We were at the door – imagine that.  He went for the wheelchair and I looked at him, pointed my index finger in his direction and, through clenched teeth, said a single word, “Don’t.”  He didn’t.  He escorted me into the VERY busy Hospital of the University of Pennsylvania emergency room and spoke with a hard-looking woman behind the desk.  She motioned us down the hall.  We walked silently to the elevators and ascended to the 6th floor of the Perelman Lung Center.  I didn’t say another word to him that night.

My new nurse showed me to my room.  She was about 4 inches shorter than I, had long, straight black hair and was as thin as a rail.  She was curt and emotionless and I suddenly felt very lonely again.  She didn’t introduce herself or ask me my name.  She didn’t even look me in the eye.  She told me she had to go get an I.V. kit.  FUCK.  I was soooo relieved when the other one was removed that it didn’t occur to me they would have to start a new one here.  She returned and tried the inside of both elbows; my veins were rolling and she was unsuccessful with both.  Without hiding her frustration she went to my left hand.  Never once did she let me know what she was going to do.  Never once did she ask me if I was ok with it or how I was feeling.  She was having a problem with my hand too and kept moving the needle around under my skin to get the vein.  I felt sick.  I tried to think of something, anything other than this shit-stain poking that needle through my dermis.  But it was impossible.  After what seemed like an eternity, the I.V. was finally in and I was hooked up to fluids.

She left the room and I burst into tears.  The ride with Speed Racer… Nurse Wratchet using me as a pin cushion…, Jabba The Hut growing behind my heart – it was all just too much.  I held my face in my hands and wept harder than I ever had before in my whole life.  My shoulders shook I cried so hard.  My entire body was sweating from the force I exerted while sobbing.  For 10 minutes I bawled out every emotion I had bottled up over the last 2 days.

When it was over I felt better.  I needed to release all that negative energy.  It was like an emotional cleansing.  I sat there in the soft glow of the fluorescent lighting; more fatigued than a 30-something girl should be.  The nurse walked back in for something.  She took one look at me (remember, my face was all red and blotchy now) and said, “Have you been crying?” as if I should have been doing fucking cartwheels down the hallway or something.  Her tone was one of disgust; nearing mockery. How dare she make me feel judged for exhibiting a normal human emotion.  She didn’t know what I had been through up until this point.  She didn’t even know my name. 

I wanted to lunge at her and claw her eyes out.  Instead, I did my best impersonation of Linda Blair from The Exorcist and sarcastically spewed the first venomous, vulgar thought that popped into my mind that I could offend her with… “No.  I’ve been fisting my asshole”, I spat.  She gasped and left the room.  Jen – 1, Nurse from hell – 0.

Stay tuned for Part 5 in a few days….

Images *borrowed* from: Dukes of Hazard – YouTube

Part 3: Monday

Clearly, medical professionals in a hospital setting are joking when they tell you to get some rest.  What a crock of shit.

The nurse assigned to me was lovely.  Her name was Holly and she was one of Charlie’s former students so she took extra special care of me.  It wasn’t her fault that she had to bother me every few hours – she was just following protocol.  It was hard enough for me to sleep in a hospital bed on my back (I’m a tummy sleeper).  Add to it the stress of the situation, that damn I.V. in my arm and the constant interruptions and by Monday I was beginning to look like Nicholson in The Witches of Eastwick.

Not a good look for me.

Dawn broke and I sent a text to a few girlfriends.  I wasn’t thinking.  I felt like a heel when one of them responded at like 5:20 a.m. or something insane like that.  I should have waited; it was so early, but I felt so lonely.  I needed someone to talk to.  Someone who wouldn’t use the words “Mass” or “CT Scan” or “Wheelchair”.  My shocked best friend, Heather, called me around 7:30.  She tried to be positive for me, but I was in a deep despair.  “I know it’s cancer”, I told her.

Finally visiting hours were in effect and Charlie showed up as soon as he got Emma off to school. 

Then the doctors started rolling in.  First up – the Cardiologist.    He was only in my room for a few minutes, but it was apparent that he didn’t know what this mass was or how it would be related to his specialty.  He mumbled a few phrases and bolted.  Next, the Pulmonologist made his rounds.  He was the first one to offer me a tentative answer as to what this mass was… a Bronchogenic Cyst.  And though he is credited with diagnosing me, he was my least favorite of the 4 doctors I saw that day.  He was arrogant and sat in a chair in the corner of the room, seemingly as far away from me as he could get.  He dismissively waved his hand in the air and cavalierly spoke about open thoracic surgery – like cracking my chest, bone saws and heavy-duty shit like that.  I thought to myself, “Didn’t he get a good look at me?  I’m completely vain.  I don’t even have a single tattoo because I think a woman’s body is a work of art in itself!”  He was fucking my shit up by poo-pooing questions I had about what kind of scar we were talking about.  How the hell would I be able to wear cute scoop neck tops with some big-ass incision starting at the meeting point of my collar bones???  FUCK HIM!  I fantasized about getting up to kick him in the nuts.  Dick.

Several hours passed and my parents showed up.  We sat and talked, but I didn’t have any answers.  That’s when the Oncologist entered my room.

Who the hell, in their late 30s (and the prime of their life), wants to be visited by an Oncologist?  Fortunately, he was the complete opposite of Dr. Cocksucker from earlier.  He had the kindest deep brown eyes.  I trusted him immediately.  He told me he wanted me to have an MRI to see if they could get a firm diagnosis.  He didn’t treat me as a body part or an insurance payment and stayed to talk with me for a long time – as a human being.  I agreed to the MRI and waited for the machine to become available.  When I was taken down to the imaging room the Oncologist met me there.  He explained what was going to happen while in the machine and how they could tell whether it was a tumor or this cyst the Pulmonologist mentioned.  They needed to determine whether it was a solid mass or a fluid mass.  Talk about bedside manner!  The tech asked me to lay down on the moveable part of the MRI machine and they covered me with a blanket and strapped me down across my shoulders, my thighs and my ankles.  They explained again that it would be loud in there and could take some time – approximately 30-40 minutes, but I could notify them if I needed to come out of the machine at any point.  I’m not claustrophobic so I figured it would be no big deal.

WRONG!

The first 25-30 minutes were ok.  Yes, it was loud and really closed in, but not unbearable.  I had headphones on and was listening to classic rock.  But then I started noticing how hot it was getting.  My pits started sweating first, then I could feel my hair getting wet at the base of my scalp.  My breathing quickened.  Next thing I know I could feel the perspiration dripping off every inch of my body.  I started yelling that I needed to come out.  My heart was pounding and I couldn’t breathe.  It was so loud in there now!  I wanted to thrash my limbs around but they were strapped down to the sides of me.  Jesus, I had to get out of there!  My breaths were shallow and quick. My mind was racing. My heart pounding the blood through my ears. I couldn’t breathe. I couldn’t breathe! I couldn’t breathe!  The tech asked me if I could hang in there for 5 more minutes because they were almost done.  I screamed “NO!GETMEOUTOFHEREGETMEOUTOFHEREGETMEOUT!” and, even in my panicked state, made a mental note to punch her in the face once my arms were free.  The tech obliged.  It took about 10 seconds to be released from the tube.  The cold hospital air never felt as good as it did in that moment I emerged from my own personal hell.  I gasped for air.  They removed the restraints and the blanket and gave me a few minutes to recover.  I stopped shaking, retracted my violent vow to punch the tech and agreed to get back in the machine for the final 5 minutes.  This time it was much better.

When I got back to my room I started demonstrating my anxiety attack to Charlie.  I was only part way through the story when the Thoracic Surgeon walked in.  He pulled a chair up to the edge of my bed, sat down and said, “I’m going to be honest with you.  We cannot determine what kind of mass you have.  This is something beyond my ability.  I am going to refer you to Dr. John Kucharczuk (pronounced Ka-har-chick) at the Hospital of the University of Pennsylvania.  He’s the best Thoracic Surgeon in the country.  If it’s ok with you I will start the paperwork for your transfer.”  Relieved, I agreed.  I thanked him for his candidness and he left the room to start the orders.  As much as I didn’t like hearing that this thing in my chest was too much for just any surgeon to handle, I was happy that he knew the right one for the job.

Charlie went to get Emma and I mentally prepared myself for UPenn.  Why the doctors wouldn’t just let me leave and go for an appointment on my own was beyond me, but there were rules to be followed, I supposed.

My little family came back to visit after dinner.  While Charlie was talking to his Dad on the phone, Emma lay in the bed next to me.  The tv was on, but I wasn’t watching it.  I was stroking Emma’s hair and started to feel sorry for myself.  For the first time that day I began crying.  My nine-year-old little girl sat up, looked up at me, patted my arm and said… “Well Mom, at least you’re not pregnant.”

Stay tuned for Part 4 in a few days…

Images *borrowed* from:  Jack pic – Unrealitymag.com;

Part 2: Wheelchair? I Don’t Need No Stinkin’ Wheelchair!

My mind went blank and I started to shake involuntarily.  I began crying.  My pits got sweaty and my mouth got dry.  It’s funny how the water in your body can transfer automatically like that.

What the hell did she mean, “You have a ‘mass’ behind your heart”???

I’m the picture of health!

I work out!

I’m not even 40!

But none of these thoughts could be processed by my mouth.  I just sat there – staring at her like a child who had stuck her finger in an socket.  Stunned.

The M.D. brought me back to reality by asking if I had a phone with me; if there was anyone I wanted to call.  I mumbled yes and moved to get up off the gurney to get my purse across the room.  But I couldn’t get off the bed; I just sat on the edge because all of a sudden I was afraid my legs would give out beneath me.  Sensing my trepidation the doctor handed my bag to me.  She put her hand on my back to comfort me and then left the room.  The only sound in the room after she closed the door was the pulsing of my blood pounding in my ears.  What was I going to say to Charlie?  How do you call your spouse to tell him it’s not that you’re just anxiety ridden?  That it’s SOMETHING.  Something unknown.

I dialed our house number.  He picked up on the second ring.  All I could squeak out between sobs was, “Can you come down here?  They found a mass the size of an orange behind my heart.”  I can’t imagine what that must have been like for him to have heard me on the other end of the line.  Probably a lot like what I had experienced 5 minutes prior.

The floor must have been abuzz with my (lack of) diagnosis because a nurse came in to check on me.  She was exceptionally comforting; she even got me an extra blanket.  Either that or she felt bad for me because I was crying so hard.  Even if you don’t see tears you can tell when I’ve been crying because my face gets all red and blotchy and stays that way for like an hour afterwards.  I hate it.  It’s probably a big reason why I try to be so funny all of the time.  I embarrassed by anyone seeing my (easily visible) weakness.

The nurse left and I was alone in the room again – completely numb.  Like a wave, it all kicked in… What would happen to Emma?  How would Charlie raise her?  I haven’t seen the Grand Canyon yet!  I want to write a book!  I got shit to do with my life!  How is it possible that I’m thinking about these things?  W.T.F.???  And then I heard Charlie’s voice in the hallway asking a staff member where he could find me.  He walked through the door looking pale.  Cautiously, he approached me, pulled a chair up next to my gurney and put his hand on top of mine.  I couldn’t even look him in the eye.  I felt sick; like I had failed him.  He never signed up for this.  This was bullshit!  He asked what had transpired over the last 4+ hours and I recounted it for him.  He told me he already contacted the parents of Emma’s friend and that they would drop her off at our house in an hour.  I was so thankful she wasn’t there right then.  I didn’t want her to see me that way – full of fear.  It would have scared her.

As the hour passed Charlie called my parents and my manager at work on my behalf to explain what was going on.  I didn’t have it in me to field their questions.  He then left to get Emma at our house.  When they got back I was still in the E.R. because my room wasn’t quite ready yet.  Emma lay down on the bed next to me and I held on to her tightly, breathing her in.  A few minutes later an orderly came to take me to my new home away from home.

With a wheelchair.

My nemesis.

I was horrified!  Wheelchair!?!?  Didn’t they see me WALK in here?  There was nothing wrong with my ability to ambulate to the elevator!  How dare they!  The doctor even said I was ‘vibrant’!  But the wheelchair was the least of my concerns at that point.  So I resigned myself to it like some 95-year-old grandma and got pushed to the 3rd floor.  Once in the room I finally realized that it was dark outside and I needed sleep.  By some small miracle I didn’t have a roommate.  Visiting hours were about to end so Charlie and Emma left for home.

And as desperately as I needed sleep, I couldn’t drift off.  Rather, I sat in that bed for most of the night contemplating my mortality.

Stay tuned for Part 3 in a few days….

Image *borrowed* from:  Wheelchair - Bradford Medical Supply

Part 1: You Have A Mass The Size Of Your Heart Behind Your Heart And We Don’t Know What It Is…

If you are willing to indulge me, I would like to take you on a 10-part series through one of the most challenging experiences I’ve had in my life.  The story is not pretty or funny, but I want share it with you provide a little insight as to why I decided to write about celebrating all of life’s events – good and bad.

I’ll never need a better reason to have a party.  Here’s why…

November 2008.  My life was rather predictable.  Emma was 9 and in 4th grade; Charlie in his 18th year of teaching; our daily routines set.  My work, however, was bat-shit crazy ~ always something new cropping up that required extra effort, extra time, extra mental grief.  It seemed as though there was a new emergency each day and I had to jump through burning hoops to fix every one of them.  On top of all this I was working with my (absolutely fantastic) project manager to coordinate an Investigator’s Meeting in Boston.

An Investigator’s Meeting is where a pharmaceutical company invites all of the doctors (i.e., Investigators) who are scheduled to participate in one of their research studies to a nice hotel/conference center and then the team presents the study information to said doctors.  I am ok with composing the content to communicate to the doctors.  I am ok with choosing the venue for the meeting and getting the details worked out if need be (that’s kind of like a throwing a party, so it’s right up my alley).  What I am not ok with, however, is standing in front of 200 doctors and their nurses presenting medical information to them.  I get nervous and shaky and sweaty.  Your typical ‘Fear of Public Speaking’ nightmare.  In order to help me with this I take a prescribed medication to calm me down just before assuming the podium.  And I wear the most fabulous 5″ red patent leather stilettos.  I call them my ‘Shoes of Distraction’ because they are my super power.  I can do anything in those heels.
Shoes of Distraction

Anyhoo…

I had to fly to Boston on Friday morning, November 7, 2008, because the Welcome Dinner was that night and the actual meeting the next day.  When I woke up Friday I didn’t feel quite right; like someone was sitting on my chest.  But I figured it was nerves so I shook it off, got myself together and headed for Philadelphia International.  After passing through security, I met up with another team member at the gate to review our presentation materials once again.

We arrived in Boston and went for lunch.  When you go to Boston, you get a lobster roll because there is little else that is more fabulous than a Boston lobster roll.  But when our meal arrived I could barely eat it.  I just wasn’t hungry.  Again, I attributed it to nerves.  I was getting sick of my lack of confidence at this point.  “Get ahold of yourself”, I kept repeating in my head.  “You have your Shoes of Distraction with you!

The dinner and meeting went just fine.  I didn’t embarrass the hell out of myself or dissolve in a pool of sweat.  But I still didn’t feel right when I got into the shuttle for the airport.  By the time I was on the flight back to Philly I was getting really pissed.  “For the love of God, it’s OVER now.  Relax, geez!” I told myself.   I closed my eyes and concentrated on each breath.  The pain had started radiating into my jaw at this point.  I was seated between 2 women who figured out they knew each other somehow and were chatting over me.  Normally I would not have minded, but during this flight I had to stifle the urge to punch them both in the throat.   I kept thinking, “It’s a short flight.  I will just tune them out.”  And I did.  Mainly because I needed to focus on staying calm.  One of them said something to me as we were deplaning about not looking so good.  I gave her a half smile, but inside I was indignant!  “SUCK. MY. ASSHOLE.”, I thought. “As if you look any better.”

Upon returning home around 10pm that Saturday night I sat on the couch with Charlie and said, “Something doesn’t feel right.  I’m sure it’s nothing.  I just need to get some sleep.”

But I awoke Sunday morning and hadn’t improved.  Charlie told me to stay in bed and went to make breakfast.  I got up about 10 minutes later anyway and ate about 1/4 of one pancake and felt as though I had just finished Thanksgiving dinner.  Finally I said to him, “I think I should go to the E.R. for an evaluation.  I’m sure they will just tell me I’m looney and give me anti-anxiety meds.  I’ll be back in time to take Emma to her playdate (in 3 hours).”

So I drove myself the to the local hospital down the street from my house.  I walked up to the intake desk and told them I was having chest pain.  If you ever want to get into the E.R. fast, tell them you’re having chest pain.  I was taken back within 1 minute.  They gave me a (very sexy) hospital gown and set me up in an actual room with walls and a door because that’s all that was available at the time.  Then a nurse appeared at the door. 

She needed to start an I.V.

despise needles.  Especially when they have to be inserted into the inside crook of my elbow.  It’s such a vulnerable part of the body for me.  Also, my veins are deep so I’m not an easy stick.  I have witnessed a live total hip replacement and a number of smaller orthopedic surgeries and had no problem watching them, but the sheer thought of needles makes my butthole pucker.

Within 30 minutes of having the I.V. put in place I had a chest X-Ray and a CT Scan.  Then I waited.

And w a i t e d.

And   wwwaaaiiittteeeddd.

Thankfully, I had the foresight to bring a book with me.  I called Charlie to tell him that I was trapped by health care bureaucracy and would he mind taking Emma to her friend’s house?

More than four hours after I walked into the hospital, the E.R. doctor finally entered the room and closed the door.  I could tell by the look on her face that something was not right and my stomach sank.  She looked sheepish and sad.  In the most sincere tone any medical professional has ever used with me, this is what she said…

“I don’t know how to tell you this because you are the most vibrant person who has walked through these doors in a long time.  This is so hard to tell you.  You have a mass the size of your heart behind your heart.  We don’t know what it is.  I made the Radiologist check the films 3 times because I didn’t believe it.  We have to admit you for further testing.  A room upstairs should be ready for you within the hour.”

Stay tuned for Part 2 in a few days…