When I Die

Sdeck at homeo I am thinking that when I die, it actually won’t be that bad. Either there will be nothing, kind of like going under anesthesia, in which case, you are in and then you are out. No regrets, no feeling pissed off you are missing the action. You are just out. Like the light. Switch on and switch off. But not like the fluorescent light where it takes a few seconds of flickering. This would be like a regular old bulb. On and then off.

Or it will be like in the Ghost movie. I will get to hang out with all the people that are dead already but stuck between the real world and the whatever. Those are the people who either died suddenly like murder or a car accident and don’t want to let go yet. They want to keep watching the real world because they are not ready to move on. Or they are people like me, who were sick, so it wasn’t sudden but nonetheless, they also don’t want to let go.They want to keep watching their loved ones, try to protect them.

In that case I might meet some interesting peeps. Think of all the political prisoners and people who died after they revealed some government secret or came really close to it. Or the many talented scientists from centuries past dying too soon of a disease. I am thinking this should be a really fun place to hang out and talk with everyone. Also, this would be a place where I could scare the shit out of the people I don’t like in the real world by messing with their things, turning their lights on and off, appearing as a ‘ghost’, hiding their keys, you name it. At the same time I could let the people I love know that I am fine, that I am still here, that I still exist to a degree. I think they would like it.

Or I may end up in a place where all the dead people who are OK with dying end up. Not heaven, not hell, just some place. I imagine it as an exact replica of this world but you would be able to move between the years and locations really easily. So for example, when I meet my Grandma, we would be able to go back to her apartment in Prague in 1990, and play cards, and she would cook me the svickova and I would stuff my face with 16 dumplings like I used to.

And then I would be able to appear in America in, let’s say 2003, and find Ti, my beloved Beauceron, who died in 2012. There would be no one else, because only she died…and we would have the whole house to ourselves and the whole yard, and we would play with the ball and then I would let her sit on the couch with me and we would just hang out.

And then I would go to my other grandparents’ house, about 60km outside of Prague and find my granddad in the garden and ask him all the questions about WWII that I didn’t know to ask when he was still alive. We would sit in the garden, among his beloved tulips, the sun would shine and we would talk and talk.

This final reality would be one where not only you can move between years and places with ease, it would also be a place where everyone is in the same class, no one is above anyone else, everyone can mingle, and there is no evil. No theft, no gossip, no jealousy, no murder, no conniving, no backstabbing. All the murderers and killers and torturers and thieves and liars of the worst kind would not be there. Why? Because you would only see the people you want to see. You would only see the places you want to see. So if you ever wanted to go in the darkness, you could. But, why would you? You got enough of it in the real world.

Besides my Grandma, Granddad and Ti, I am thinking I would want to see these people: Elvis, Freddie Mercury, George Carlin (at least once a day to make me laugh), Kurt Cobain, Albert Einstein, Louis XIV (oh, man, imagine being able to dress in those clothes at that time and run around Versailles!), Brittany Murphy (because she looks like she would be fun to hang out with), Patrick Swayze (of course to do the Dirty Dancing dance), Michael Jackson, princess Diana, Cleopatra, Alexander the Great, Caesar, Charles IV, the list can run forever.

Also, this would be a place where I would find all the animals that ever got tortured and killed by people. I would pet them and feed them and stay with them in a huge farm house with acres and acres of land. I would have a special place for all the poor pitbulls tortured and fought every day of their life. There would be a great savannah for all the elephants from all the circuses and places where they are used for labor. There would be a huge ocean for all the dolphins and orcas and whales. There would be huge meadows for all the cows from all the horrible farms around the world.

And that’s where I would be happy. Every day. No disease, no stress, no uncertainty, just peace. And that’s where I would wait for all the people I love. Patiently. Because I would want them to live long lives on the real earth. I would let them know that I am doing well by sending little messengers here and there in the form of a beautiful bird that would sit on their window sill, or a colorful butterfly landing on their shoulder. A little fox peeking out of the woods for a few seconds or a deer family standing regally, watching my loved ones for a while. I would hope that they would feel my closeness for at least a fleeting second.

So I guess there is nothing to be afraid of, right?

Trans-Vaginal What?

uterus-Dartmouth Medical School

Image Credit: Dartmouth Medical School

My oncologist called me, or rather sent the news via my chemo nurse, to let me know that I needed to go get a pelvic ultrasound because of an inconclusive PET scan.

This was on late Friday afternoon, so I spent the whole weekend thinking I have uterine cancer, alternating between crying uncontrollably and feeling like I didn’t give a crap about anything.

On Monday morning I called the hospital to set up the appointment and was lucky enough to get the same day slot.

Fully expecting the type of an exam like from the movies where eager parents watch the first black and white blob appear on the screen, I was dismayed to see in my online chart that my appointment was for a trans-vaginal ultrasound. I didn’t like the sound of it. At all. Then I pondered about who would be doing this. I didn’t have the luxury to demand a female technician, did I? Were they going to have some students needing to watch? How exactly was this going to work?

I arrived at the hospital, signed in and attempted to distract myself with my tablet. I blankly stared at my Facebook page, reading the same posts over and over again, never remembering what they said. Finally, they called me in.

“Hi Ee-va, I am Liz,” Said a middle aged lady and lifted her nametag badge with her fingers. She led me to the changing room.

“Take your pants and panties off and put this gown on, it opens in the back. And here is the bathrobe. When you are done, put your shoes back on and sit in this chair and wait for me. My name is Liz.” And she lifted her badge off the lapel of her lab coat again.

I did as instructed and briefly wondered if some creep installed a hidden camera in the changing room that resembled a department store fitting room. I sat in the designated chair and felt the pit of my stomach starting to hurt. My hands were cold and I started to sweat. I could see my heart beating through the gown. What was I going to find out in just a few minutes?

Liz came back to lead me to an exam room. She ushered me onto a bed and turned off the lights. The computer and the ultrasound machine emitted a cold blue-ish grey glow. She asked me a few brief questions and introduced me to the chaperone who was a lady in her forties. She wore a white lab coat, black stockings and sat on a swivel chair close to the door. I was a prisoner of the ultrasound room. No way out.

“Lay down on your back.” Liz instructed.

“First, I am going to do your ultrasound by moving this wand on your belly. Then I will ask you to go to the restroom. Then you will come back and we will use another wand to insert in your vagina.”

Oh god. Not only I had THAT to look forward to, now they were doing TWO tests? I swallowed rapidly. Did that mean they were expecting something to be wrong?

“Are you allowed to tell me about what you see on the ultrasound?” I asked Liz.

She smiled. “No, no I can’t. The radiologist will have to look at it, then he will call your doctor, and the doctor will call you.”

I wanted to smack the smile off her face. What the fuck was so funny about the fact that I would have to spend another agonizing night of uncertainty? I needed to know NOW what was going on. I fought back my anger and the tears that were pushing their way in my eyes.

“Well”, I said trying to steady my voice, “I have been kind of freaking out about this exam since Thursday last week. Is there any way I could find out anything today?”

“I mean, I can see if the radiologist would give me a word or two when we’re done here but he leaves at 5, so we may not be done on time.” Liz retorted as she squirted some gel on to the wand.

She proceeded to move it across my lower abdomen, pressing harder here and there, angling it, all the while pressing different buttons on the machine. I couldn’t read her face for clues. Like other doctors and technicians, she mastered the poker face. I did see a small furrow between her eyebrows here and there. Each time, I would look at the monitor but all I saw were grey smudges. How could they tell anything from this?

“You must be really having a hard time with the allergies outside right now, aren’t you?” Liz asked cheerily.

WHO THE FUCK CARES ABOUT MY ALLERGIES?!!! I wanted to rip the wand out of her hand and stuff it in her mouth.

“I don’t know, not really.” I said with what I hoped was a tone that conveyed ‘I-am-being-polite-please-stop-talking’.

She finished the belly ultrasound and handed me a towel to wipe the excess gel off. Then I was ushered to the bathroom to pee. I closed the door behind me and suppressed the urge to punch the wall to prevent myself from crying. I walked back out and was asked to lie on the bed again.

This time, Liz asked me to separate my knees and lift my hips. While I was in this awkward position, she inserted a wedge underneath my butt. Then she pulled out the OTHER wand and squirted more gel on it. It resembled a hair curler. Or really, it resembled a really skinny penis…it was about half an inch in diameter and widened to about an inch at the end.

Liz said: “Put your hand between your legs. I am going to hand this to you and you insert it in.”

“Uhm, OK.” I said as I awkwardly scrambled under the sheets waiting for the ultrasound dildo to touch my hand.

I did as instructed and Liz started the second exam. I am not sure if whoever came up with this exam didn’t understand physics, but apparently a trans-vaginal ultrasound consists of tilting the wand in ALL directions imaginable. Even the ones that don’t naturally exist in the body. There were a few times that I thought that if I could see my belly, I would probably see the tip of the wand poking out like an arm of an alien. Feeling Sigourney Weaverish, I clenched my teeth as Liz tilted and probed and concentrated for way too long on my right side. That couldn’t have been a good sign.

Finally, she started pulling the wand out half an inch at a time, snapping last minute pictures. I mentally urged her to hurry up and get that thing out of me. How many pictures did one need?

I was then ushered to the bathroom yet again ‘to clean up’ and handed a small cloth rectangle. I wondered how many times it was already used for this very purpose and how good the hospital washing machines were. I opted for the paper towels.

Liz then took me back to the dressing room and said she would go talk to the radiologist if he could let me know something. I just sat there, not moving, shoulders slumped, staring at the wall in front of me. I wanted to wake up and realize all this was just a bad dream. The whole two years. No eye cancer, no breast cancer, no possible uterine cancer. I blinked. I forced myself to take two deep breaths.

“Eva?” A middle aged man, who pronounced my name correctly, peeked around the corner.

He wore a striped dress shirt and a tie and had Andy Rooney eyebrows. He introduced himself as the radiologist but all I could concentrate on was his face. I tried to gauge the expression for good or bad news. Fail again. Did all the hospital employees take a poker face course in Vegas? We shook hands and he showed me which way to go to his office.

I entered a room with a desk that wrapped around three walls upon which sat three large monitors. All lit up with black and white smudges.

“Take a seat”, he offered, and then probably because of seeing my strained face, he quickly added, “everything looks good. There is nothing to worry about.”

My eyes filled with tears instantly. He furrowed his brows and tilted his head in confusion.

“I am sorry”, I sniffled, “You don’t understand, I already had the eye, then the breast and now I thought I was gonna have this…” My voice trailed off.

“It’s OK.” He said and swiveled towards the monitors.

He then proceeded to explain that the uterus picked up the tracer because it was a muscle and that while there were some changes due to the anti-cancer drug I was taking, those changes were normal and I had nothing to worry about. He told me I had some cysts on the ovaries but that they were very common and come and go frequently.

I stuttered my thanks, saying something about being grateful that he stayed overtime.

“Oh, we stay very late sometimes.” He said cheerily as he swiveled back to face me.

We looked at each other from our office chairs. Nobody said anything for three seconds.

“OK, well, thank you again.” I rose from my chair.

He looked a little surprised. Did he want to say something else? Was I supposed to say something else?

He got up too and we shook hands again. I stepped out into the brightly lit hallway and felt the tears fill my eyes again. I put on my sunglasses and walked out into the waiting room. The receptionist gave me a peculiar look. We were on the basement level of the hospital with no windows. I didn’t care. I didn’t have third cancer!

Can You Guess the Artist and Song?

Jour et Nuit

I decided to create a poem using only the lyrics from various songs. This is about my experience with eye cancer, breast cancer, people telling me what to do and how to do it, my husband being deployed during all this, and dealing with the possibility of more health problems. I will post under the poem who the artists and songs are, so after you are done guessing, scroll down. Each song is separated by a space. There are five artists total with various songs from each.

MY CANCER JOURNEY

Suddenly something has happened to me
As I was having my cup of tea
Suddenly I was feeling depressed
I was utterly and totally stressed

I’m not ready for this,
Though I thought I would be.
I can’t see the future,
Though I thought I could see.

The world has changed or I’ve changed in a wa-ay.
I try to remain, I’m trying not to go insa-ane.

All my plans fell through my hands,
They fell through my hands on me.
All my dreams it suddenly seems,
It suddenly seems,
Empty

But you’re gonna have to hold on. You’re gonna have to hold on,
You’re gonna have to hold on, hold on, hold on.

You’re spinning me around,
My feet are off the ground.
I dunno where I stand.

Sittin’ in an armchair,
With my head between my hands;
I wouldn’t have to feel like this
If you’d only understand

So to hell with what you’re thinking,
And to hell with your narrow mind,
You’re so distracted from the real thing

Understand the things I say, don’t turn away from me,
Understand what I’ve become, it wasn’t my design.

Hey! Wait!
I’ve got a new complaint
Forever in debt to your priceless advice

La, la, you got to say it if you want to,
But you won’t change me.

But everything changes in time,
And the answers are not always fair.

And I cried so hard, The ridiculous thoughts, oh.

Pink ribbon scars
That never forget
I tried so hard
To cleanse these regrets
My angel wings
Were bruised and restrained

Oh, my life is changing everyday,
In every possible way.

I never worry
Now that is a lie
I don’t ever want to feel
Like I did that day
Take me to the place I love
Take me all the way

Distill the life that’s inside of me
I’m anemic royalty
I’m so tired I can’t sleep

Lying in my bed again,
And I cry ’cause you’re not here.

My love
I send this smile over to you

I focus on the pain
The only thing that’s real

And the thing that freaks me out
Is I’ll always be in doubt

I can’t take this anymore.
I decided to leave,
Walked out through the door.

Can’t wait for tomorrow
I might not have that long
I’ll tear my heart out

Lesson learned
Wish me luck
Soothe the burn
Wake me up

 

All the above is from songs by the following artists (in the same order):

The Cranberries: Animal Instinct
The Cranberries: I Still Do
The Cranberries: I’m Still Remembering
The Cranberries: Empty
The Cranberries: Ridiculous Thoughts
The Cranberries: Sunday
The Cranberries: Wanted
The Cranberries: Free To Decide
The Cranberries: Ode To My Family
Nirvana: Heart Shaped Box
The Cranberries: Pretty
The Cranberries: Cordell
The Cranberries: Ridiculous Thoughts
Smashing Pumpkins: Today
The Cranberries: Dreams
Red Hot Chili Peppers: Under The Bridge
Nirvana: Pennyroyal Tea
The Cranberries: I Can’t Be With You
Smashing Pumpkins: Disarm
Johnny Cash: Hurt
The Cranberries: Animal Instinct
The Cranberries: Put Me Down
Smashing Pumpkins: Today
Nirvana: Dumb

I’ll Just Pretend the PET Scan Was Clear

panic grand canyonI sat in the doctor’s office waiting room, mindlessly switching from one website to another on my tablet. My insides were twisted in pain and waves of fear pulsated down through my fingers.

Then I saw him. The doctor was coming through the waiting room with lunch in his hands. He spotted me and said “Oh, Hi.” And smiled a little.

I wished so much I had the Terminator-like computerized vision that would immediately reveal to me in a neat print of red digitized writing what the doctor’s thoughts were. Or his emotions, his body temperature. Did his pulse speed up with pity when he saw me? I needed something. ANYTHING! Any sign of whether my PET scan was good or not!

I stared as his back disappeared in the belly of the office. I lowered my eyes back to my tablet. Then the nurse called me in.

After all the weight and blood pressure checks, I sat, waiting, yet again. I pulled out my tablet and started playing Jeopardy. I had to do something. My hands were shaky, I started sweating and my heart was beating fast. I alternatively got consumed by the game or lifted my eyes from it, barely fighting the tears of anticipation of bad news.

Dr. L. came into the room. I put the game away. He asked me how I was and I stuttered something stupid about being fine so far and about how the weather was finally nice. WHO CARES! My brain screamed! Who cares about the fucking weather! Just get to the results!

The doctor opened up my PET scan results and started clicking and scrolling through images. He frowned and clicked some more. Then he impatiently pressed the up and down arrow keys in a multitude of taps like a woodpecker. Up and down. Up, up, up, down, down, down, down. I saw the picture of my head get wider and narrower as the image got to the neck. And back up again. What was he looking for?

“Which eye was the bad one again?”

“The left one.” I said, trying to swallow despite my dry throat.

‘Hmm.” He said and kept scrolling, now through my torso. He used his mouse wheel to take a quick ride up and down the ever changing images of my heart, lungs, liver, stomach, you name it.

“Oh, I see what they are saying.” He murmured to himself.

That was it. The telltale sign. This was not going to be a two minute, ‘everything is clear’ type of a discussion. I fought back tears. I felt heavy. I didn’t want to be there. I wanted to die but yet live at the same time.

“OK,” He exclaimed and straightened up in his chair. He tilted the monitor towards me. “So, here is your head, the brain is always lit up like that, it uptakes the stuff they gave you in the injection, that’s normal.” He scrolled with the mouse and got to my upper torso. He switched to the up and down keys and tapped a few times until we both saw two orange glowing spots, evenly on each side of my body.

“So this is what looks like what is called brown fat. People sometimes have it show up on scans.”

“How is that different from cancer? How can you tell?” I questioned him. I didn’t care if he thought I was rude.

‘Well, cancer usually doesn’t grow symmetrically like that.”

All I heard was the word ‘usually’. What if I am not ‘usual’? Everything about my cancers was ‘unusual’. I looked back at the monitor. Now he was all the way down in my lower abdomen.

“OK, so here you see that the kidneys and the bladder took up some of the tracer too, that’s normal. But see here, the area behind where the uterus is, that is showing some physiological uptake too.”

“What does that mean?” I asked.

“Did you have sex in the last 72 hours?”

“No.”

“Do you have your period?”

“No. Haven’t had one since chemotherapy.”

“Hmm…well, the radiologist says it is a physiological uptake, so I don’t think there is any need to do any further testing and imaging.

“How would it look if it was cancer?” I asked masochistically.

“Well, usually, cancer you can point to with one finger, like here it is”, and he pointed with his point finger to the monitor, “while yours is more of an area”, and he waved his palm towards the monitor. “So, I’ll see you again in four months and that’s when we will do some blood tests too again. Oh, and I will get a CD made of this PET scan so you can take it to your eye doctor in NY.”

“Why, do you think something is wrong?” I remembered how he asked me at the beginning of the visit which eye was the bad one.

“Professional courtesy.” He answered. I stared at his face for any signs of other thoughts. Nothing. Perfect poker face. Was he not wanting to be professionally courteous in January when I had my last PET scan?

I didn’t have the strength to ask anything else. I could feel the pressure in my throat squeezing my vocal cords and pushing tears in my eyes. But I had to muster one more question.

“What about the lung nodule? Is it still there? Did they say anything about it?”

He looked at the report again and said:

“I’ll have to call the radiologist, I can’t see that much detail on this monitor. I will email you in your MyChart later today.”

I nodded.

“Well, it was nice to see you again.” He extended his hand towards me. I shook it. It was blurry.

I pressed my lips together and looking down on the floor escaped to the restroom. I let it out there. Tears, big, hot, cascading down my cheeks, onto the perfectly waxed linoleum.

Later on that day at home, I tried to rationalize all I heard earlier in the day. I managed to go to bed around midnight and sleep for a few hours.

Today I got a call from my other oncologist that she wanted me to schedule an ultrasound to check my uterus. I hung up the phone and stared blankly in front of me. There were no more tears left.

All I know is that I can’t go through all this again for the third time.

I Am Becoming Rain Man

no parkingEver since I got my second cancer diagnosis, I noticed my increasing need for a specific routine and a rising obsession with every detail of my life. I won’t get up from the bed until the alarm clock rings even if I wake up earlier and feel ready to go. I walk my dog after work and prepare something to eat before 7PM so that I can watch the Wheel of Fortune, Jeopardy, and one episode of something on Netflix. I get extremely annoyed if someone calls me during those times and at the same time I feel incredibly stupid for watching these shows.

I get annoyed in Whole Foods when the radishes in the bunch are not all red but also include white and purple bulbs. I get paranoid about what I eat and feel guilty about every grain of sugar that enters my body. I feel like it travels directly to any cancer cells that may be leftover and blows them up like a birthday balloon.

If I eat a piece of chicken, I think about how it was killed and cry, feeling guilty of my contribution to the problem. Then I go and buy fish instead but think about them flailing in the nets and get depressed all over again. When I try not to eat any meat, I get anxious about not giving my body what it needs and possibly causing myself another cancer.

I eat the same exact thing every day for breakfast and lunch. I don’t feel like changing it. I like it to be the same every day. At least I don’t have to have exactly eight fish sticks. Yet.

I like to wear certain socks, but I don’t have seven pairs of them so I get annoyed when I run out half way through the week. I can’t stand the noise the washing machine makes. I hate when people upstairs walk around late at night, their floors creaking with every step. I wake up multiple times a night because of nightmares.

I want to go out but when I hang out with healthy people I feel like Raymond in the elevator trying to dance with Charlie’s girlfriend. Completely out of touch and going through the motions while my brain flies around in its own stratosphere.

The sight of the hospital and the smell of the doctor’s office makes me want to pound the side of my head with my hand like if the smoke alarms are going off. But then, when I actually sit there waiting for the physician, my brain shuts down and only ponders trivial things like how full the paper towel dispenser is and how often the floor gets mopped.

I fill my day with rituals so I have no idle time to actually think. I read so long when I am in bed that my eyes water to ensure I fall asleep within a few minutes of turning off the light. I am terrified of free thoughts because I know where they will go. This will go on every day until I know the results of my next PET scan. Then I will feel OK for a few weeks. Then it will start all over again. Creeping in like smoke under the door. One ritual after another. I wish I could at least count cards.

Meet My Therapist: My Dog

Main picThe seventeen months between July 2012 and December 2013 wore me out to the point that I almost lost my mind and ended it all.

While my husband supported me as much as he could when he was home, it was during the long hours when he was gone that the anxious thoughts and panic attacks crept into my mind. In those times, the only other diversion from myself was my dog.

In those seventeen months, she witnessed me being slammed with eye cancer (melanoma), eye tumor surgery, eye chemotherapy drops, eye cancer re-occurrence, more eye surgery, radiation, bad PET scan, breast cancer diagnosis, bilateral mastectomy, 4 months of chemotherapy, losing all my hair, losing 10% of my body weight, reconstruction surgery, hundreds of doctor’s appointments and countless meltdowns. While I thought I would never see the light at the end of this twisted tunnel, she reminded me that even though I was going through all this, I should also:

Take long walks:

Eva Sunny 06

Lounge by the pool:

Sunny Florida 11

Play in the ocean:

Sunny Florida Beach 21

Be silly:

being silly

Climb mountains:

climb mountains

Take hikes:

take hikes

Play hide and seek:

In the flowerbed 1

Go outside in a blizzard:

snowing

Play in the snow:

play in the snow

Take a break to enjoy the day:

enjoy the view

Take a break to read:

Sunny reading

Take naps:

take naps

Enjoy my special day despite of being a week post-op:

wedding

Take more naps:

take naps 2

And most importantly, never, EVER, forget my therapist anywhere we go:

dont leave me behind

 

 

Five Days with Me, Myself and My Sewn Shut Eye

eye surgery croppedAlmost exactly a year ago, I was healed from my eye cancer surgery and the subsequent chemo drops that ate away at my eyeball, and I was planning our trip to France. However, the Tuesday before our departure for the city of love, I had to go for another checkup with my eye surgeon. I strolled through the Manhattan streets, enjoying the nice weather. I walked in the doctor’s building with a spring in my step and settled in the waiting room.

As I was mentally visiting Champs-Elysees and choosing in which café to order deux cafes et une grande bouteille d’eau minerale, I heard my name called. I looked up and the doctor was beckoning me into the exam room. I urged him to hurry up in my head so I could continue my French reverie.

I knew something was wrong when he kept looking at my bad eye over and over again, switching on different lights and checking my previous eye photos on his big TV screen on the wall.

“Something’s growing back.” He said bluntly. “Right here.” And he pointed with his mouse on the freshly taken photo of my eyeball. I saw it. The faint opaque shadow in exactly the same spot where my cancer was not even a year ago.

He looked straight at me and his shoulders slumped. He sighed. His eyes were sad. I felt the exam chair melting away from underneath me and the room started to spin a little. This couldn’t be true. I was going to Paris and then I was getting married, damned! My brain attempted to quickly put up a big wall of denial. It crumbled just as quickly and panic set in. Was I going to lose my eye this time?

“I am going to scrape it for biopsy.” The doctor said and proceeded to scratch at my cornea with a tiny scalpel.

A week later, while I was in France, I found out for sure that the cancer was back. As if the trip (you can read about it here) couldn’t get any worse.

The treatment consisted of doing a so-called eye plaque. Eye plaque was a small gold cap, filled with radioactive particles that got sewn on the eye and was left there for five to seven days. This is what it looked like:

radiation          radiation-2

The surgeries were scheduled for May 17 and May 22. I was getting married on June 1st. I cried for several days knowing that I would barely be able to get through the wedding day due to the pain from the surgeries. I also knew that any photos taken that day were going to capture my blood red and dilated eye. I received a heavy led container into which I was supposed to put the cap in case it fell off my eye. My fiance and my dog had to stay at least five feet away from me at all times. I wasn’t allowed to leave the house.

When I woke up from the first surgery, I felt OK but found a big grey led patch over my eye to prevent the radiation from going elsewhere on my body. When the time came to put the first set of drops in, I realized my eyelids were sewn shut except for a small opening in the inner corner of my eye. It was almost impossible to get the drops in there.

Then the five day purgatory began. I spent the day lying in bed, feeling like someone was stabbing me through my eyeball straight into my brain. It was a constant, unrelenting, pushy headache that made even talking painful. It was an epic pain that went unaffected by any medications I had. Reading or watching TV was out of the question because the smallest amount of light made my eyes water and my nose run.

So I just lay there and found that one can really waste some time wondering around his or her own head. I thought about my bad PET scan I had only a few weeks prior and how “…there was something in my left breast”. I lay there thinking about how unfair it was if I had another cancer. I lay there, my heart squeezed in an iron band of fear that wrapped around my torso. My stomach felt hollow with despair. I had a hard time justifying any meaning of life.

These states of depression alternated with violent outbursts of anger – all in my head since any movement made the headache so painful I considered finishing off my bottle of prescription strength Tylenol. The anger ate me away, made me cry and made me sweat. How dare this life give me two cancers in the same year? This was bullshit! I didn’t deserve this. Why should my life be so screwed? I dreamed about smashing porcelain dishes, boxing into a saw dust filled bag, yelling at the top of my lungs, stomping my feet. But all I could do was lay there and take it.

By day three, I felt like a beaten down dog that just notices as the sun travels across the ceiling and illuminates different windows of the room. I forced myself to at least drink some water and eat here and there. The bedroom was hot because we had not installed our AC units for the summer yet, so I lay on top of my covers, arms and legs spread to keep cool. The headache was so intense I felt waves of nausea and fear rising from my feet up through my body. I counted the hours. I tried to not move my eyes at all.

In the end I brought my tablet, laid it on the bed next to me and listened to all the episodes of Desperate Housewives. I couldn’t watch it. Even when I turned the brightness all the way down, the glow was unbearable.

Finally, the day of the removal came. I dreaded the car ride to the hospital with the brightness of the windshield and the bumpiness of the road. The surgery was delayed and as I sat in the waiting room near the OR, dressed in my customary cotton gown and sticky socks, my headache intensified because I shivered from cold. Finally, they called me.

I marched through a narrow hallway and saw my surgeon and his crew lined up outside of the operating room. They were all in blue scrubs, their face masks hanging off one side of their face, watching me approach. I was holding the led container and as I approached them I extended my hand.

“Do you want this?” I asked my surgeon.

“I’ll take it.” He said and smiled.

As I lay on the operating table I stressed the fact that I get sick from anesthesia. The surgeon informed me that they were not going to put me under. WHAT? My good eye stared at him in alarm.

“What do you mean, you are not putting me under?” My voice trembled. “You are just going to cut it off when I am all alive?”

The surgeon laughed. “Well, we certainly want you alive, but you will just be mildly sedated.”

I wanted to take back my nausea rant. I imagined the surgeon cutting at my eye as I was watching it, unable to move but feeling all the pain. And then I was out.

I woke up in the recovery room, the eye patched up with gauze again. I had no headache, presumably because of the sedative. It was over. I felt immense relief. For about 15 seconds. Then my anxiety returned. Now what? Was the cancer going to come back AGAIN?

As the days post surgery turned into weeks and months, my anxiety about the eye faded. Or it could have been because I was plunged into the whole breast cancer adventure. Either way, I should find out in about a month. I am going back to NYC to get my eye checked out again. Keep your fingers crossed for me.

Don’t You Dare Be Negative

smiley faceRecently, I looked online at various cancer coping magazines and saw their submission guidelines for publishing. What I came across astounded me. Many websites that claim to be designed for people who are coping with cancer warn any potential contributors that they must be “…informal, upbeat, and positive”, and that “…articles about death and dying are not accepted”. Another gem of a magazine ordered that no alternative medicine stories are allowed. And yet another one demanded that you must be “inspirational” and “…provide hope”. The prize though goes to the one place that commanded “…except where medically appropriate, substitute other words for ‘patient’, such as ‘survivor’.”

So this is what I say to the editors and owners of these publications:

First of all, how dare you tell me that I must be upbeat and positive? How dare you perpetuate this hypocritical and hurtful propaganda that only makes cancer sufferers feel lonelier and more isolated? When someone is down on all fours trying to crawl to the bathroom because the chemotherapy makes them sick, the last thing they want to read about is how someone “put a smile on their face and went shopping for a family of five”. When a 21 year old girl looks at herself in the mirror and sees a bald head and no eyelashes or eyebrows, the last thing she wants to read about is how someone had a blast picking out their cancer scarves. These people want to read real stories about someone who feels just like them. They want to hear that it is OK to feel desperate and scared. They want to know that being miserable is normal. They want real encouragement. They don’t want a maniacal account of attending children’s soccer games and hosting a party despite the chemo side effects.

Second of all, how dare you tell anyone that articles about death and dying are not acceptable? The people that are, sadly, diagnosed too late or have incurable cancer are not worthy of your precious magazine’s space? Death is a beast that sits on every cancer patient’s shoulder, and most of the time, till the rest of their life. They need to talk about it and they need to be able to release their fear so that the Grim Reaper that’s so comfortably settled on their back loses his power. How dare you not provide space for the family and friends to remember their departed loved one? How dare you not honor the ones who have lost their life to this sneaky and wicked disease?

Third of all, how dare you omit the wonders of alternative medicine therapy? A lot of cancer patients have no other option than natural approaches because everything else failed. How dare you tell them they mustn’t share their experience and, perhaps, even a success story? Or do you maybe have the big pharma lining your pockets to instead display ads for the latest anti nausea and sleep aid medications?

Fourth of all, how dare you dismiss stories from the heart, simple stories of everyday life and instead demand inspiration and hope. People with cancer lose hope every day in a vicious cycle of pulling themselves from the abyss of despair to the top, peeking over the wall just to get knocked down again by another treatment, by another complication. Their only inspiration is a vision of the day when they are able to sit down at a dining room table, dressed in normal clothes and enjoy a full meal and a glass of wine without throwing up and without having to stop half way through because they are too weak. So how dare you demand hope and inspiration? Let the cancer patients tell you what they want to tell you, you may actually learn something.

And, lastly, how dare you require that a cancer patient be only called a survivor? Who gave you the authority to label people for whom life suddenly became a commodity that may be lost in a matter of months, weeks or even days? We are all patients, we are all getting treatment, we go through horrible times, we cry and we get angry. That is the reality of cancer. That is the reality of being a patient. We are not Robinson Crusoe – he was a survivor from a capsized boat. Our body is our boat and it is leaking. We are frantically trying to plug all the holes but for the rest of our life we will never know how much strength we have to stay above the water. We will never know if we, indeed, are survivors or if the next wave is going to take us down.

So, please, Mr. or Mrs. Editor, take your submission guidelines and shove them up your ass. Let us be patients. Let us bitch and moan and curse and cry. Let us talk about what we want to talk about. We don’t have the time and energy to make you feel better through fake happiness and beating on our chests in false bravado. We need to save our strength to get through the day.

Call Me Pamela: The Breast Reconstruction after Mastectomy

vegas sphinxFinally, the day of my boob job was here. I felt incredibly guilty for feeling excited about having another surgery but getting my boobs back, and bigger then before, really made me happy. I knew I was never going to look completely normal and that no plastic surgeon could recreate everything exactly right, but I was glad to get rid of the tissue expanders that were locked inside my chest muscles for months. Hard as a rock, they prevented me from sleeping on my stomach, poked me when I rolled on my side and made wearing a bra an impossibility. Baggy shirts were my fashion of the season because the expanders looked like two large mishapen potatoes on my chest.

At the hospital, I changed into the surgery uniform that became so familiar to me: the gown that’s impossible to tie in the back by yourself, the sticky socks, the bathrobe. Shivering, I wrapped everything around me as much as I could and almost bisected myself with the bathrobe sash but I was still freezing. I lay on the stretcher in one of the pre-surgery bays, clutching the skimpy sheet.

My stone faced nurse came over to inquire about important things like if I ate that morning and if there was a chance I was pregnant. After denying both, I sheepishly asked if it would be possible to get another blanket. To my surprise she finally cracked a smile and brought over an extra sheet. It didn’t help much but I was momentarily distracted by the rising tempo of the surgical suite. Employees in various scrubs switched from walking to jogging while constantly lifting their heads to a board on one wall as if the Superbowl was playing. I figured the different patients and their surgeries must have been listed there.

An anesthesia nurse opened the sheets drawn around my bed and stood by the portable computer next to my head. As he started typing my answers to his questions, I noticed a growing frown on his face and a deepening furrow between his eyebrows. Finally, he turned to me and said: Continue reading

Oh Hair, Where Art Thou: The Chemo Hair Loss Journey

DSCN1967I sit here, three and a half months after the last poisonous infusion that scared my hair follicles into stupor, and I can still see my scalp through the little bit of hair that managed to grow back. What’s the holdup? I ask in my head rolling my eyes upwards as if the hair could answer me.

I was never completely bald and smooth headed like a knee. Instead, my skull looked like a newly born bird’s head peeking out of an egg…bald with a few sporadic hairs. I kept most of my eyebrows. Only about half my eyelashes fell out. However, probably at the cancer’s concession, my leg and armpit hair stopped growing completely.

I saved money on hair dressers, shampoo, conditioner, shaving cream and razors. Instead, I spent it on doctors, cancer scarves, fleece caps and organic make up. But I liked that at any point on any given day I could slide my palms over my legs and they felt perfectly shaven. I liked that there was no bad hair day. I liked that showers took far less time.

And then I stopped liking it. About a month after my last chemo when some follicles here and there decided to cooperate and sprout like a shy spring flower, I got impatient. I started yearning for the time when I would be able to lather up my legs and shave them again. I mused over the image of me feeling my hair between my fingers as I lather the conditioner through it. But my body was taking its sweet time.

About two months after the last chemo, I looked like a military recruit after the head shave. I briefly considered working out in the style of Demi Moore in GI Jane to complete the looks and possibly go out hatless, but, alas, after failing to do even one full real push-up, I lowered my expectations. I put on my leather jacket, imagined a ring in my nose and tried to assume the “fuck you” look Sinead O’Connor mastered so well. Fail again.

It is three and a half months after chemo now and I still don’t look quite normal. Even though the hair is about half an inch long, it is not thick enough to convey the image that I did this hairstyle on purpose. I am doomed to the miserable cancer scarves. God, I hate them. No matter how many compliments people give me, I know what I look like. I look like a person with cancer. I ooze sickness. I bleed frailty. I evoke sympathy.

But I also get away with shit. I get in people’s way in the store and they don’t say anything, they don’t even give me the look. I hopelessly hold my emptied hand cart at the cash register swiveling around looking for a place to put it and a helpful employee takes it from me. I ask for a specific item, and after doing a double take, the store clerk goes the extra mile to look for it. I get sushi made to order and with a smile. I get a seat in the subway. I can leave my shoes unshined and commit a fashion faux pas. It’s all good – I got a cancer scarf.

When I take it off at home, I dream of the day when I don’t have to wear them anymore. I think I want to make a bonfire and burn them all with a glorious laugh, watching them shrivel and blacken in the flames. But I know what’s really going to happen – I will stash them away in the closet, folded carefully in a stack and keep moving them from place to place until finally they’ll end up in one of those clothes drop-offs. Maybe that would be a more dignified disposal method. I don’t know. I still got at least a month or two to think about it.