Palliative Care, Fluorescent Sky Lights, & Gratitude…

Palliative Care.

Who knew two words on a little sign above a non-descript doorway could make my blood run so cold it feels like someone has ripped an icicle spear from a wintery roof and stabbed it into my carotid artery. Every second I stare at the sign, the drip, drip, drip of fear slides through my veins.

I look away in case in some messed up way, staring at it for too long will foreshadow my future. An image crystallizes in my mind of my friends and family bringing their young children to see me in my prison while I spend what’s left of my youth, waiting for “it” to be over.

To escape this morbid thought, I search for the Information Desk and speed-walk under florescent lights installed in the shape of sky lights to get there. Patients in draughty hospital gowns lean against IV poles and visitors wear the masks of soldiers in the midst of battle.

Just make it to the information desk…just make it to the information desk, I whisper to myself. When I get there, a white haired woman wearing a Wal-mart inspired blue volunteer vest gives me a bright smile and asks how she can help. I almost grab her by the wrists, stare into her grey eyes and say, “you can help by promising me I DO NOT have the start of ovarian cancer on top of my recent breast cancer and I WILL NOT end up in Palliative Care. Ever.” Instead, I ask her to direct me to Diagnostic Imaging area for my 2pm ultrasound appointment. Continue reading

Juggling Other People’s Fear

How would you react if you received a phone call and found out that your father, sister, or friend had cancer? Would you stop for even a split second to consider how tough it is for that person to share her horrible news? How since she learned of her illness, she has become an instant master at juggling other people’s anger, denial, and sadness every time she talks about her new role as a cancer patient?

How she had to listen to her son rail at the unfairness of the situation and argue that it should have been him that got sick; how her best friend became mute with shock and immediately found an excuse to get off the phone; or how her grown daughter launched into jagged sobs and needed consoling.

I am sure it will come as no surprise to some of you, when faced with news about my Dad’s cancer diagnosis, I immediately slipped into a state of hysteria.  Continue reading

Completely Exposed

What makes your stomach free fall? Is it when you tell someone that you love him and you don’t know if you will hear it back? When you slide your resignation letter across the desk and it hits you that you don’t have a solid plan for the future? When you stare into the face of your new baby and wonder how you will ever keep him safe? Maybe you lean in and embrace this vulnerability or maybe, you prefer to fold this feeling neatly into a blue Rubbermaid container and slide it under your bed so that you can pretend it doesn’t exist.

I spent the first 30 years of my life hiding my vulnerabilities under my magic cape of over-achievement. I figured that if I obsessively controlled my environment, my career, and my relationships that maybe no one (including me) would notice the intense desire for love and belonging that bubbled below the surface. Cancer chipped through my tidy illusions of perfection and left me completely exposed, both emotionally and physically. My recent surgery served as yet another reminder of how intense vulnerability can feel…

January 24, 2011 - I push my IV stand through the swinging doors of the room and shuffle reluctantly towards the operating table. A nurse wearing a garish, multicolored scrub cap asks me to introduce myself to the other two nurses and explain the purpose of my upcoming surgery. I stumble on the words as if it’s a pop quiz and I don’t remember that I am here for the second stage of my breast reconstruction following my mastectomy last May.

Her far too chipper voice then instructs me to hand over my hospital issued housecoat. I try to simultaneously remove it and hold the back of my gown together as a draft sweeps across my rear end. She ignores my attempts at modesty as she tugs at the hem of the gown and tells me to release the tie around my neck. I slide my completely exposed backside into position on the table and then swing my legs up so that I can lie flat on its unforgiving surface.

The nurse unsnaps the sleeves of the gown and I watch goose bumps rise like a wave of dominoes from my shoulder to my wrist. She covers me with a thin sheet as she takes away my last piece of clothing. I ask her how her team stays warm during surgery with temperatures so icy that I can almost see my breath. She reassures me that the lights give off plenty of heat. I look up at the massive spotlights that will soon turn my exposed flesh into a college football stadium on a Friday night. Dr. L has already used jiffy marker to map out the ‘plays’ for this upcoming game across my chest.

I turn my gaze to the side and see the straps that will hold down my left arm during surgery. I don’t need to look to know that my right arm will be restrained as well.  The nurse sees the terror on my face and suggests that she take my glasses so that I can close my eyes. Unfortunately the sounds of the room still clatter into my ears as plastic packages are ripped open and stainless steel instruments bump up against each other.

The anesthesiologist finally lumbers into the room and asks in a jovial voice if I’m nervous. I nod as my lower lip wobbles. His booming laugh grates against me as he says that I can’t get nervous otherwise he’ll get nervous. I don’t smile. I just silently plead with him to hurry up. Finally, a syringe full of milky white fluid plunges into my IV and he instructs me to take deep breaths into the oxygen mask he places over my nose and mouth. I inhale the smell of plastic and intensely fresh air before everything fades to black…

Maybe you haven’t recently had the opportunity to lie naked on an operating table under flood lights, but I am sure you can relate to feeling exposed, either physically or emotionally, by an event in your life. How did you handle that experience? What do you think about the idea that it takes courage to be imperfect and that we need to let go of who we think we are in order to embrace who we really are? A couple of months ago, a friend sent me a link to a TED Talk (by Dr. Brene Brown) about vulnerability and the ideas mentioned above. I really loved what she had to say about shame, imperfection, and worthiness and have included it below. I also follow her blog Ordinary Courage, which includes links to her books, DVDs, and talks.

My Near Death Experience

The story of my near death experience started on a Sunday night last January; three days after my second round of chemo. Let me take you back there…

My arms and legs tingle and my stomach somersaults in fear as I reach up to touch my hot, clammy face. I grab the thermometer from my bedside table and jab it at the underbelly of my tongue. Dammit! For the first time since I started obsessively checking on Thursday, the numbers on the digital screen crest above 38*.

My oncologist promised that if I started shooting up with my immune boosting drugs the day after chemo, instead of five days later, I could prevent another trip to the emergency room. I heeded her advice and took my new role as GMF junkie seriously. I would roll the icy refrigerated $250 vial between my palms to warm it up, streak an alcohol swab across my skin, load up my syringe, and pierce the needle deep into my stomach fold. Yet, in spite of my diligence, I STILL HAVE A FEVER? WTF?

Twenty minutes later, I give my name to a smiley woman at the front desk of The Cancer Agency and follow a nurse with puppy dog scrubs and squeaky orthopaedic shoes to a hospital bed. She pulls the curtain to give the illusion of privacy, and then fills up two Tabasco size jars and ten vials with my blood. I wonder if I have any left as I lie shivering in my feverish skin. Two hours and twenty warming blankets later, the doctor on call finally arrives with my test results.

“Good news”, she says, “your white blood cell count is within normal range.” She prescribes a dose of preventative antibiotics and tells me that I can go home.

Sophie (my support person/partner in cancer crime) looks at me with elation because I don’t have to go back into a sealed room. I want to match her enthusiasm, but I am so fevered that I can barely lift my head off the pillow. I feel like a 92 year old with Parkinson’s as I pull on my sweater, my coat, and the scarf that I use to cover the blinding white of my bald-head. Sophie pushes a wheelchair up to the bed and I gingerly step into it.

The doctor waves a cheery goodbye as Sophie pushes me down the hallway. En route, I see a water machine with plastic cups and ask her to stash some in her purse for me. During my recent hospital stay, I learned that drinking out of plastic vs. glass makes water taste less like it has been infused with the flavour of rusty nails. Sophie parks me by the wall, checks to see if anyone is watching, and then hustles over to the water dispenser.

As I stare down the hallway to make sure the coast stays clear, my vision gets fuzzier and fuzzier. I call out to Sophie with a high-pitched wail. “Help! Something is wrong. I can’t see.” I wonder if I am dying as punishment for stealing a few measly cups.

Sophie drops everything back on the counter and yells for help. The doctor runs up and crouches beside me as I tell her between sobs that I am going blind (my glasses are still on my nose – I double checked). She asks questions in an attempt to downplay my fear. A furnace of heat rips through my body and sweat drips out of every pore. I reach up to pull off my scarf to get some air and then everything fades to black.

When I open my eyes, I am back on my hospital bed as nurses strip off my clothes,  a blood pressure cuff clutches my right arm, and an icy draft floats across the layer of dried sweat that clings to my skin. Before I fade out again, I notice tears in Sophie’s eyes. The prick of an IV in my arm wakes me up the second time and I hear the doctor order one of the nurses to run my IV ‘wide open’. I shiver as the icy liquid surges up my veins.

I ask Sophie what happened. She tells me how my head fell and ricocheted off the back of the wheelchair. How she saw the whites of my eyes as my leg kicked out into nothingness. How sick I looked with sweat running from the top of my bald-head down to my pale collarbones. How the doctor didn’t even turn my wheelchair around as she yelled at the nurses for help and pushed me backwards into the room. How as the nurses stripped me and hooked me up to machines, she had pictured having to call my parents with tragic news.

“Don’t worry. I’m fine.” I say to her. “I promise.” The color slowly returns to her face.

I don’t have the heart to tell her that I am secretly a little bummed that I missed the most exciting part of the night.

Why couldn’t I have witnessed my near death experience from the corner of the room as I looked benevolently down on my sick self? Why couldn’t I have seen a bright light and had a chat with some angels before they convinced me to turn around because I had so much left to accomplish on Earth? At least then I would have a good story.

Two IV bags of saline, 3 Tylenol and a consult with the doctor later, Sophie expresses concern about taking me home. What if this happens again? What if she can’t get me medical attention soon enough and I stop breathing? The doctor smiles indulgently and says that my blood pressure has now stabilized and she doesn’t see any reason why I should faint again.

It turns out that my near death experience wasn’t that near death after all.

Confessions From My Chemo Diary

Here’s an entry from my journal a year ago.

Dear Diary,

Newsflash…chemotherapy blows! So much for my ‘mind over matter’ strategy. I thought if I combined my 20-year no-barfing streak and Lance Armstrong’s advice on keeping physically active, I would kick chemo’s ass. I didn’t have grandiose plans for a post cancer Tour De France (I haven’t ridden a bike since the pink 10 speed I got during the sixth grade), but I thought I would make the most of my free time between treatments by going for long, introspective walks and meeting up with friends for cappuccinos.

My first round of chemo had other ideas for me …

Although I had planned to start January 7, 2010 well rested, I only managed to squeeze in about two hours of sleep the night before. From midnight until 3am, I watched infomercials, planned my first day of chemo wardrobe, scrubbed my bathtub, and read Anna Karenina in an attempt to get tired. Then I spent the next three hours punching my pillow in the dark while I cursed the day my Starbucks barista was born (she obviously ruined my life by making my 5pm latte with caffeine instead of decaf). I had already plotted my return to the scene to yell at her when I remembered the nurse telling me that the pre-chemo steroids could cause insomnia.

I choked down half a piece of toast and headed for the Cancer Agency. Then, I settled into a green lazy boy chair while the nurse quizzed me about my drug intake the previous day. She shook her head in irritation because I had missed the bold instructions on the pill bottle to take 2 steroid tablets twice a day and not just one.

She topped up my steroids intravenously and then hung a plastic bag with a bio-hazardous sign on the IV stand next to me. I tried not to watch as the cold poison dripped into my veins. Less than five minutes after it started, I yelled at her to stop before I projectile vomited onto the little old lady beside me. (Did they not consider the risk of chain reaction barfing when they designed the chemo treatment rooms to have patients sit in a circle, facing each other?)

A doctor arrived and instructed the nurse to dump Benadryl and Gravol through my IV so that I would stay too stoned to notice my body’s allergic reaction to the drugs. Four hours later, I got home, organized my closet, and decided that maybe I should get a bike.

But when the steroids and the good anti-nausea medication wore off a couple of days later, I reconsidered. I spent the weekend crawling (sometimes literally) between my bed and the bathroom floor. Sitting in front of the toilet while eating out of a bag of corn chips (my gluten intolerance ruled out soda crackers) became my new hobby. When I stood up to stumble back to bed, I tried to avoid looking at my spotted, 14 year old acne face in the mirror and then gingerly lowered my screaming muscles onto my duvet (they ached more than the day after I completed my first and last half-marathon). I lay there too sick to move and wondered how people got through more than four rounds of this hell.

By Wednesday night (six days post chemo), I started to shiver inside my clammy skin. GO TO THE EMERGENCY ROOM IF YOUR TEMPERATURE RISES ABOVE 38* shouted the message on my Chemo Emergency Contact sheet. I tried to be a hero and tough it out, but the next morning, my Aunt drove me to Vancouver General Hospital. I knew I had a high fever (39.9* or almost 104* on that morning) when she had to come with me to the bathroom while I gave my urine sample because I was so delirious that I got lost between my stretcher and the toilet. After 12 hours in the ER, three doctors agreed on a diagnosis of Febrile Neutropenia. I was impressed until I heard that it meant fever with an undetermined infection. No sh!t.

At 4am, a porter pushed me through hushed hallways until we arrived in my new pressurized isolation room in the acute care ward. They sealed me in. Later that morning, a nurse whispered to me from behind her face-mask that I had a white blood cell count of zero. I nodded, unfazed. Then she explained that if I got exposed to any type of illness, I could literally die. I was silent. I couldn’t think about all of the germs that floated by me during my 24 hours in Emergency.

Three days of temperature checking, bedside counselling (who knew chemo would make me more emotional than my worst case of PMS), and 2am gown changes (hello hot flashes), a doctor came in with my discharge papers. I could have kissed him as I thanked him and the amazing nurses for their tireless support.

I put on real clothes for the first time in four days and looked back at my hospital bed as I opened the door of my temporary jail cell.  I tried not to notice the colony of hair strands littered all over the white sheets. Today I would celebrate my freedom; tomorrow I could worry about shaving my head and preparing to face off with chemo for Round 2.

Escape

Maybe you can relate to that first moment of awareness. When you open one eye and search your dark bedroom for clues. You wonder why it’s so quiet. Did you forget to set your alarm? A rush of panic whistles into your gut. Then you remember that it’s Saturday.

You grin and burrow under your duvet as you leaf through the memory of your dream. You pick up the cell phone on your nightstand to call your lover, just so you can hear his scratchy morning voice. But as you continue your ascent into alertness, you remember. You can’t call. It’s over. Your stomach pulses with pain. You lie there, immobilized by sadness, as you try to process the reality of another day without him.

A year ago, as I counted down to my first day of chemotherapy, that same feeling of dread greeted me every morning. To get through the day, I sent upbeat emails to people announcing my medical leave or met up with girlfriends to drink wine and trade holiday stories. I shopped for new bedding, did my taxes, and organized the clothes in my closet by colour. But as much as I tried to escape, the murmurings of fear took up more and more space in my mind. I couldn’t concentrate on anything. At least that is my excuse…

It’s January 5, 2010 and Sophie and I have just turned onto Ash Street en route to the Cancer Agency. She asks how I feel. I tell her I’m fine. This is just an informational session. I won’t have my first treatment for a couple of days. I tell her that I am living in the moment (yeah right).

We park and as I yank my purse over my shoulder, I hear the pill bottles slam up against each other. When we squeeze into the crowded elevator, I try to keep my bag from swaying (I don’t need a constant auditory reminder about why we are here). On the second floor, I flip through a dog eared magazine from 2007 until I hear my name and we are ushered into a tiny office that smells like re-heated meatloaf. I breathe through my mouth as I open my notebook, pick up my pen, and act interested in my drug lesson.

The nurse asks if I brought my stash and in reply, I line up full containers with words like Apo Prochlorazine, Dexamathasone and Ondansetron on her desk. She hands me stapled sheets with detailed information on six different kinds of drugs (the ones in front of me and the other ones that will slide up my veins in a couple of days). Side effects ranging from diarrhea to mouth sores try to get my attention, but all I see is one word under the heading of the drug Docetacel: Alopecia. I hate that I now know this means baldness. I put down my pen and my vision blurs.

I float through the rest of the appointment and don’t come out of my panic coma until half an hour later when I see the receipt at a nearby pharmacy for my immune boosting drugs. $2149.00 to get me through the first half of chemo. Are you kidding me? The pharmacist shrugs and slides a paper bag full of syringes, alcohol swabs, and little vials (that I must hurry home and refrigerate) across the counter to me. I silently thank the Manulife Insurance Angels for covering this bill. But my gratitude slips as I visualize injecting the contents of these vials into my stomach.

I stumble to the street and watch for Sophie’s black Volvo SUV. She said she would circle the block while I ran into the pharmacy.

A vehicle pulls up; I get in, close the door and keep my eyes down so that Sophie won’t see the tears. The Toyota logo on the grey mat catches my eye. In slow motion, I shift my gaze to the left. A woman wearing a full face visor waves her hands and yells at me. Where did Sophie get the visor and why is she wearing it on a cloudy day? I know something is not right but it takes forever for my brain to catch up. The woman beside me is not speaking English and looks nothing like Sophie. My face explodes with heat. I am in the wrong SUV. I stammer my apologies and try to slip out unnoticed, but ten people waiting for the bus stare me down.

My audience watches in interest as another SUV pulls up and I triple check Sophie’s face before I get in. I tell her to hurry so I can get away from the stares. She asks me what happened and before I reply, I am laughing, a belly-jiggling, mind-freeing laugh. I am laughing so hard that I can barely tell her about how I accidentally car jacked a woman with a box of syringes as my weapon. She probably thinks that cancer has finally made me crazy, but I don’t care. If only for a moment, I have escaped the dread and want to stay in this beautiful moment of laughter forever.

I Promise You’ll Look Better After

I slide into the fluffy terry cloth robe and admire the mist clinging to the buildings of downtown Vancouver. As I wait for him, I pick up an In Style magazine and leaf through the glossy pages of the December issue. I ignore the fluttering in my stomach and get lost in my desire for the stylish clutches and killer heels in the Holiday Fashion and Accessories spread.

A light knock on the door announces Dr. L’s arrival. I pull the robe a little tighter and flash him a fake smile as I take in his chiseled features and brown hair. (I had expected grey hair to go along with his reputation as one of the top plastic surgeons in Vancouver). He shakes my hand firmly, introduces me to his resident sidekick and banters with me about the craziness of the holiday season. I tell him that with chemo only two weeks away, I plan to eat an entire cheese ball in one sitting and then alternate between red wine and rum and eggnogs every night. He laughs and congratulates me for living in the moment.

With the pleasantries behind us, he nods for me to loosen the belt and slide the robe down my arms. As the cool air hits me, I am surprised by the heat that floods my cheeks. I thought I had left my modesty in the O.R. during my first surgery, but the softness of my robe and the gorgeous city view have thrown me off my patient game.

I suck in my stomach and sit as tall as I can while he appraises my breasts with a long intent stare. Then, he pulls out a green marker and raises one eyebrow. I nod and the jiffy smell takes me back to the much simpler days of standing in front of my parent’s white board with my sister, fighting over whose turn it was to use the blue pen.

He makes a few comments to the resident in their secret doctor slang before he turns to me and says, ‘Well, Terri, I have to tell you that your breasts are deceptively wide and you have a significant fold.’

Now I wish he would go back to the medical jargon. Why does he need to tell me that I have wide, droopy breasts? Couldn’t he keep that information to himself? I want to pull the robe up to my neck and seal it shut while I tell him to save the criticism for his paying clients. But I let him continue.

‘The good news is that you will look amazing when I am done with you. With your youthful skin and slim build, I can give you perfect breasts for the rest of your life.’

Now I want to jump off the table and swallow him in a hug. But given my compromising attire, I settle for my first genuine smile in days. He says that we will plan to do the mastectomy and reconstruction surgery 6-8 weeks after chemo ends. He wishes me luck with my poison injections and tells me not to worry about the surgery because he will take excellent care of me. I believe him.

Since that day, a year ago, I have had my moments of rage at the impostors under my pectoral muscles that pretend to be breasts. But, in that moment, I couldn’t see all of the challenges ahead. I simply wanted to celebrate. Cancer had finally become about something I would gain in addition to everything I had to lose…

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