Eye cancer, breast cancer, re-occurrence, treatments and the fall-out of those.
When one counselor asked me what I did for fun, at first I couldn’t think of anything and then I found myself stuttering something about cooking and taking walks with my dog. Even I knew how pathetic it sounded.
That’s why I decided to do the biggest compartmentalizing feat of my life so far and forget about cancer for two weeks during our vacation in Prague.
I forgot about all the diets, articles about what causes cancer, prevention tips, prognoses, everything.
We drank zazvorak and sahleb in a hookah lounge located in a cellar of a building from the Middle Ages.
We took shots of homemade slivovice from my 90 year old Grandma who claimed it was good for health.
I met up with all my cousins and aunts and uncles whom I have not seen in more than 20 years.
I met up with friends from Elementary School, Middle School and High School.
I felt cobblestones under my feet and weaved my way through narrow streets.
My husband and I stayed in a nightclub, dancing to the 80’s music till 4AM.
I ate all the fresh pastries and buns and rolls I could find in the bakeries.
I re-connected with my father to whom I have not spoken for 18 years.
Instead of wearing an extra sweater, we warmed up with mulled wine.
I imagined being the baroness in the castle we visited.
We drank shots of pear moonshine one night.
I ate dumplings – and many of them.
I visited my grandparents’ grave.
I drank Plzen almost every day.
I ate a whole cake by myself.
I spoke French on the plane.
I had beer with lunch.
I petted strange dogs.
I didn’t worry.
I lived my life.
It was 8:45 AM. I reclined in the dental hygienist chair thinking that I would definitely make my 10AM work conference call.
Something in the back of my mind chastised me though because it had been a year and a half since I visited the dentist last.I made excuses with my breast cancer diagnosis, the mastectomy, the chemo, then getting over chemo, until I realized I could make excuses forever.
X-rays were taken as I awkwardly bit on the winged inserts.
“So how does it look?” I asked, my voice trembling a little. I still had vivid memories of the communist era dentistry with no Novocain and general disregard for the patient’s comfort.
“We’ll just have the doctor look at it.” The hygienist dodged my question.
Alarm bells rang in my brain. That’s what they tell people when things are bad. Everywhere. Not just the dentist.
She put on a face mask, handed me the OSHA required clear plastic glasses and bent over my mouth. She cleaned vigorously and when I rinsed, little pieces of bloody tissue swirled down the tiny side sink.
The doctor came in and peered in my mouth.
“You have two old fillings in your molars.” She frowned and went on to explain that all the silver leaked out of them and only the bad material remained. Or whatever she called it. Bottom line was I needed them replaced.
“But your teeth are not strong enough, you will need a crown.” She announced. “On both teeth.” She added.
“OK.” I stuttered. I had a faint idea of what a crown was.
However, I had no idea how much a crown cost.
The receptionist informed me that the doctor had time right then to do my crowns. I hesitated for a brief moment but decided to get it over with. I pulled out my credit card, paid close to $3,500, went to re-park my car and settled in yet another dentist chair.
Two assistants and the doctor filled the tiny room. Two Q-tips dipped in red numbing gel were put in my mouth. As the gel melted and numbed my gums, I was forced to swallow small amounts of it, thinking about how I had not eaten anything yet that day.
The doctor picked up the dreaded Novocain shot and I closed my eyes. Just as I started to relax thinking that maybe the red gel numbed me so much I wouldn’t feel the injection, the doctor steered the needle directly to my nerve. Despite myself, I jerked unexpectedly as the pain shot out of my lower left jaw. The doctor finished the shot as I felt my armpits soak with nervous sweat. After that, everybody left the room.
I sat there, waiting for my mouth to numb. Everybody returned 10 or 15 minutes later. I ran my tongue over the back left part of my mouth. To my alarm, I could feel almost everything on the inside of my gums.
The doctor started drilling and the sound of the machine sent my mind spiraling into the times I sat in the dentist chair as a kid, twitching in pain as my teeth were drilled with no pain medication.
My whole body was tense and I had to force myself to breathe slowly and deeply. Periodically, I tried to un-tense my muscles, only to find myself rigid as a board a few minutes later. My palms sweated, my stomach hurt and my body was on a super high pain alert.
And then it happened. I could feel it. I could feel her drilling. I jerked. The doctor stopped, surprised by my reaction.
After explaining I really could feel it, she proceeded to push in another injection. As she squeezed the plunger on the syringe, my heart started beating uncontrollably. It beat faster and faster. I started getting hot and heard the heartbeats drumming in my ears.
Oh my God, I thought, I was going to die right there, in the dentist chair. After all that I had been through. I was going to die this stupid way. Did they even have resuscitation equipment in this office? I wondered as my heart sprinted. My hands shook and my legs trembled. I looked like I was being electrocuted.
The assistants left the room again.
“You let us know when it feels like you have a fat lip, OK?” The doctor said over her shoulder as she left the room as well.
I spent the next 20 minutes leafing through People magazine touching my lip and being nervous that I could still feel it. Eventually, my heartbeat calmed down and my arms and legs stopped shaking as much.
The doctor came back in and inquired about the numbness of my lip.
“It’s better than before but I can still feel it tingling a little.”
The doctor decided to proceed with the procedure.
The next 15 or so minutes of drilling went well except for my sweating, drooling and tensing. Then a new problem emerged. At that point, my jaws had been opened for almost 3 hours and despite the rubber wedge in my mouth “to rest my jaw”, I felt like I would never be able to close my mouth again.
I could only guess what was happening in my mouth but at that point I figured that the old fillings were removed and some very plasticky smelling substance was poured in to fill the holes and create the stumps on which the crowns would sit.
Then the doctor picked up the drill again. My eyes widened. The Novocain surely wore off by now. I lay back, clenching my fists expecting the first jolts of pain.
And, as if on cue, it happened. The sharp stab of pain from the not-so-numbed-anymore nerve. The doctor paused and appeared bewildered that I could still feel something.
“Just keep going.” I said, exhausted, thinking she surely must be almost done. “It feels great.” I continued as they made me bite down on some paper.
“Well, I want it to be perfect.” The doctor smiled.
“I don’t care, it feels fine, just finish it.” I breathed out.
The doctor drilled for another 5 minutes or so and I felt a couple more painful jolts but the end was in sight.
She finally hung up the tool on the side table, impressions of my teeth were taken several times over and temporary crowns were placed and cemented in place with two of the assistants working in unison inside my mouth.
They pulled the blue rubber “comfort wedge” from my mouth and buzzed the chair in an upright position.
My head spun, I was shaking, I felt dizzy and exhausted. I walked out of the office with the instructions to come back in two weeks for the real crowns. It was 12:30 PM.
By the time I got home, all traces of Novocain disappeared from my body and an enormous headache and jaw-ache settled in. I googled best pain killing method for toothache and based on that advice, took one Ibuprofen and one Tylenol. I wrapped my head in a soft blanket and lay on the couch, moaning in pain.
About an hour later, I started to feel like a human being again. Until I realized my jaw was so sore I could only open my mouth about an inch.
In a week, I go back in for round two. Wish me luck.
I am a skeptic. I am an atheist. I don’t believe in spiritual things or cosmic conscience. So when I rode the subway to my first reiki appointment, I kept berating myself for wasting my time and money.
But all else failed. Acupuncture, breathing exercises, self help books, psychologists, counselors, calming teas, meditation, visualization, exercise. My anxiety successfully reigned my body and mind.
Reiki is described as an ancient Japanese relaxation technique that employs light touch and adjusts your life force energy.
Being who I am, I smirked and dismissed it for years. Only upon the insistence of my naturopath and because of the black hole the anxiety was pulling me towards, I gave in and decided to give it a try.
I was ushered into a dimly lit room and the therapist talked to me for about 15 minutes about my issues. We narrowed it down to a fear of cancer re-occurrence and overall super-sensitivity to all things sad or difficult.
Then I lay down on a massage like table that was heated and she covered me with a cotton sheet. I was wearing all my clothes underneath. Soft soothing music played without any harsh instruments like the violins that can produce annoyingly whining and sharp notes.
I closed my eyes. The therapist laid her hands on my clavicles and started reciting mantras for relaxation. She then laid her hands over my ears, my forehead and my scalp. Each position was held for several minutes. At the same time I was instructed to try and breathe slowly and concentrate on the breath depth and speed.
Despite myself, I started feeling good. I felt like I was in that no man’s land between being awake and being asleep. And yet, I wasn’t sleeping, I heard every word the therapist said.
She hovered her hands over the center of my forehead. No touch, just hover. Within a few seconds, a dark green circle appeared in the center of my closed eyes and stayed the whole time she held her hands over my forehead. As soon as she moved them away, the green circle disappeared. Later at home, I read that the center of the forehead is where, according to reiki, the third eye was.
She then laid her hands on my stomach, slid them underneath my lower back, top of my thighs, shins and feet. Then she held my hand in both of hers which had a strange grounding effect but at the same time I felt like my bed was spinning in circles.
She finished back at my head. I had a hard time emerging from the soft cloud that my brain was cradled in. I held my eyes closed for a little longer as she talked me back to reality.
During the session, she used biofeedback and measured my pulse which dropped dramatically after the first 15 minutes. It remained low for the rest of the session.
I rode the subway home and all the sounds felt muted, softer, calmer.
Reiki worked for me. I went back again and the experience was the same. I may have found my anxiety’s Achilles’ heel.
I stepped on the outside staircase landing, leash in the right hand, my dog pushing past my legs, tail wagging. But instead of going down the four flights of stairs, I stood rooted to the cement floor.
My heart was pounding against my chest and I felt like my torso was being squeezed by an anaconda.
Despite the crisp 50 degree air, my forehead beaded with sweat and I struggled to catch my breath.
It was the smell of the cool wind mixed with leaves and old grass.
It was the temperature of the air that I have not felt in months.
Last time I smelled and felt this breeze was during chemotherapy. When I used to sleep with the windows open trying to lower the temperature of my body that was boiling with chemo drug induced fever.
I stood there on the landing, unable to move. I was terrified of making a step and smelling more of the cancer air.
My dog looked at me over her shoulder, turned back to the stairs and tugged forward on her leash.
My right arm moved, like a doll’s, like a marionette’s.
My shoes were filled with lead.
My dog tugged again, this time bucking a little. It forced me to break my glassy stare and lift one of my feet off the floor.
I took a step.
The breeze lay on my cheeks like satin. I took another step and looked down the stairs. Half my shoes were hanging off the first step.
I felt tears in my eyes. The lamp illuminated street blurred. I tried to hold my breath. Anything so I wouldn’t have to smell that smell and feel that air.
But my dog, having the momentum, seized the opportunity and headed down, full speed, tugging me behind her. My feet found their rhythm as I ran down the stairs with her, jumped on the next landing and down another set of stairs, my shoes tapping out the familiar melody.
When we got downstairs, I pushed the gate opened and heard it slam behind me with its metal bang.
The cold wind blew and I felt it move my hair. Last time I was bald.
I inhaled deeply, filling my lungs with the coolness. Last time I had a fever.
I took small steps, my legs stiff. I let myself be pulled by my dog, like a puppet dragged around the stage.
When we returned in the apartment, I closed the door and sat on the floor. I made it.
My alarm clock rang at 4:30 AM, pulling me out of a pill induced sleep. It was still dark outside and the narcotic was pushing my eyelids closed. I flung the covers off me, knowing my carefully scheduled morning routine didn’t allow for any snoozing.
It was the day of my eye cancer check up in New York City. Four months passed from the last time I went there when I got the all clear. As the days rolled by, the anxious thoughts about the cancer returning grew steadily. And magnified. And multiplied. And mutated into a monster that didn’t let me sleep for several days before my trip.
The night before the trip I had to use my leftover mastectomy pain pills to fall asleep. The other cancer pills. At least it was good for something, I thought.
I stood in the kitchen and only turned on the stove light. I drank my warm water and lemon juice, took my morning supplements and gently woke up my dog. We went outside in total silence, accompanied by only a few bird chirps. I counted the hours till I would know. In nine hours, I thought, I would know.
I left the house on the 6:45 AM metro shuttle and stood on the platform with the fresh business clad crowd. Was anybody besides me possibly going to get life altering news that day?
As the Union Station neared, my stomach started cramping. I forced myself to breathe deeply because all these videos and books said it helped. It didn’t do a damn thing for me. My heart inevitably beat faster.
I stepped off the escalator and walked through the glass station doors, my eyes searching for the departure displays. I could tell from afar that something wasn’t right. I saw yellow blocks on the far right side of all the screens.
As I got closer, I saw the words “Cancelled” displayed by every single train going up north. I reeled. This could not have been right. I wasn’t prepared for that. I thought I imagined every possible outcome for that day but not even being able to go to New York?
I rushed to the Acela Express counter and asked the question I already knew the answer to:
“So, are all the trains cancelled?”
The Asian middle aged lady behind the counter couldn’t care less.
“Yeah, everything cancelled.” She didn’t even look at me.
I stood there for a second and then pressed her:
“Well, do you know why?”
“Uhmm…something about the tracks…” She mumbled. “Do you want a refund?” And she yanked my ticket out of my hand.
“No, I don’t want a refund yet.” I started feeling my anger bubble in my stomach. I snapped the ticket back out of her hand and she raised her eyebrows.
“Do you know approximately when the issue may be fixed?” I asked.
“No, we don’t know anything.” And she turned sideways in order to continue her conversation with another unconcerned clerk.
I fought an irresistible urge to jump on the counter and put a fist in her impassive face. Did she not realize I was supposed to find out today if my eye is OK or if it needs to be taken out?
I walked away, tugging my phone out of my carefully packed bag for the day. I leaned on one of the columns right in front of three policemen with a dog and texted my husband and two friends through my tear filled eyes. I needed someone to be sympathetic. Someone to understand.
I rode the subway back, feeling hollow. I managed to call the doctor’s office and leave a message with the answering service that I wouldn’t make it that day.
I got back home around 9AM and began the long process of re-scheduling my appointment and train ticket. I was going to have to wait two more days. I sat at my desk, uncomprehending the fact that instead of now knowing in five hours, I wouldn’t know until two days and five hours from that point.
I sat down in the living room, on the floor, and cried for at least half an hour. I felt completely mentally exhausted and I hadn’t even gone anywhere yet. Through the rest of the day, I marked the hours and had another crying meltdown around 2PM because that was the time when I was supposed to know.
Thursday morning arrived and once again I got up, took my dog out and headed for the Union Station. I felt like a puppet, my legs being jerkily lifted up and down, my arms swinging by my side. The Amtrak ride was uneventful except for my stomach tightening with every mile that put me closer to NYC. As we whizzed through Secaucus, I knew I had less than 15 minutes till the city would swallow me and spit me out in front of the doctor’s office.
Dr. F’s office was packed with people and I got the last seat available. I was by far the youngest, as always. When Dr. C. called me in, I got up and dropped my bag. I hoped no one could see how much my hands shook. I sat down in the chair, the doctor looked at my eye and then started taking close up photos.
“Look up to the left.” She instructed.
“Look down to the left.”
“Look all the way down.”
“OK, straighten up.” She released me and turned to the right to look at my eyeball pictures on the big TV screen on the wall.
“OK, come back again and look up to the left again.”
She looked at the monitor.
“OK, I am going to take one more. Up to the left please.”
My insides went cold. Something was wrong. Something must have been wrong. She never asked to take the same picture that many times. It was also the area where the original bigger tumor resided.
I tried to control my body as it started trembling.
She dripped dilating drops in my eyes and sent me to the waiting room, saying Dr. F. would call me next..
“OK.” I croaked my throat completely dry and squeezed shut.
I sat in the waiting room, the world becoming blurrier and blurrier. Strangely, my stomach pain subsided. I felt heavy and given up. So this was going to be it. There was no other cure for another re-occurrence besides taking the eye out.
I listened to the hum of the office and hated the receptionist girl who bounced around in her expensive Anthroplogie style short dress and high pony tail. I could tell by her voice that it was the same one who dismissed me on the phone two days earlier and almost didn’t give me that day’s appointment. Did she realize she was dealing with people who may be losing their sight?
Dr. F. called me in. This time I didn’t drop anything. I felt like Anne Boleyn, marching to her execution.
Prepared. For days. Prepared.
Dr. F. looked at my eye with all his apparatuses and then turned to the TV screen. Here we go, I thought. I held my breath.
“Well, it looks pretty good…there is…blood vessel…” He mumbled.
“I am sorry…what did you say?” I leaned forward in my chair.
“Oh…well, there is this bundle of blood vessels but they were there before. Besides, radiation damages them…so it’s good.”
It was good? I sat there, seeing the blurry outlines of his face.
“I am good?” I asked, my voice shaky.
“Yeah, and your ultrasound is good too.” He referred to the eye water boarding that Dr. C. performed about half an hour prior by inserting a plastic cup in my eye while I was laying down, pouring water in it and then sweeping the ultrasound wand over the water surface.
“So…” Dr. F. paused. “I’ll see you in four months?”
“Yeah…” I said. “Four months.”
I walked out, my legs wooden, my head spinning. I just got four more months with my eye.
There was a large thick straw like tube that forked at the end close to his face. He operated his wheel chair by alternatively putting one or the other end of the fork in his mouth.
He looked like he was in the 30s with neatly combed brown hair, parted on the left side. His face was cleanly shaved and he looked like he could just get up and walk away from that chair.
Had he been in an accident? I wondered.
I lowered my eyes when he turned his head and made eye contact with me.
When the metro braked at the Union Station, I decided to exit the train through a door further from me, just so I don’t have to go behind the wheelchair guy and stress him out to hurry. I joined the line of people heading for the escalator. I saw that he was also on the platform, a little bit to the side of the tide of all the bodies.
Suddenly, I heard a distinct voice and somehow I knew it was meant for me:
“Excuse me, could you please push the elevator button for me?”
I turned around.
The wheelchair guy was looking in my eyes and I stuttered:
“Oh…yeah…sure…the elevator…” I swiveled my head around searching because I never used the elevators before.
At that moment, another man approached:
“You need to use the elevator?” He looked at the wheelchair guy with a matter of fact approach. “Here, I am going too.” And he headed for the elevators.
I looked from one to another and took a few steps with them as if to show I wasn’t just going to bolt from my responsibility. The wheelchair guy turned his head and smiled a little. I nodded my head and watched him ride alongside the helpful man.
I waited until they were by the elevator and then I finally got on the now empty escalator.
By the time I finished that ride, I had tears coming down my cheeks.
Here I was freaking out about my upcoming eye cancer appointment in NYC and there he was, the guy who couldn’t even push the elevator button.
I tried to stop crying as to not arouse suspicions of the fellow travelers and mainly the station police but I couldn’t help it. I kept thinking about all the things the wheelchair guy couldn’t do on his own.
Swipe a tickly hair off his face. Caress a loved one. Write a letter. Unlock his own door. Get up from the couch or bed or chair whenever he wanted. Hug someone. Pick up and hold a child. Pet a dog. Feel the ocean water swirl around his ankles.
Wipe away his own tears.
“It’s a good thing you have a feeling there!” exclaimed my plastic surgeon as she plunged her scalpel into my breast.
I was reclined in a chair in her office and she was starting my nipple reconstruction surgery. Ever since the mastectomy, which involved removing my nipples and all the breast tissue, I had little to no feeling in the skin that covered my silicone implants.
However, as I sat in that chair, I suddenly felt a searing pain, sharp as, well, as a scalpel, cut through my body. I jerked and glanced down at my sterile towel draped chest.
“I could feel that.” I let out hesitantly.
The doctor looked up briefly and bent back down to cutting. Apparently, she thought that the few squirts of anesthetic she squeezed under my breast skin ten minutes prior was enough.
“Ow…I could really feel that one.” I said, this time with panic in my voice. I clenched my fists along my body and felt myself go rigid with the expectation of another slice.
“It’s a great thing to have a feeling there.” The doctor repeated.
Then, as if to re-consider, she paused and said: “OK, I will put more anesthesia there.” Then bent down and proceeded to cut elsewhere in my breast.
She was carving out an oval out of my horizontal scar that stretched about four inches across each breast. Then she was going to use that oval to sculpt a new nipple. She informed me that she would have to make it extra large because eventually the tissue would most likely shrink. The only thing my brain retained was “most likely”. What if I was not the rule? What if I ended up being the exception? Would I walk around with supersized nipples? Would I re-define the meaning of the headlight jokes?
The doctor sighed, got up and brought over the gigantic anesthesia syringe and poked all around my breast to numb it some more. I lay there, starting to shiver in the freezing temperature that was apparently necessary for a successful operation. I didn’t dare to look down at my breast.
She resumed the cutting and I was relieved to not feel the scalpel boring into my flesh. However, then she starting sewing. Again, I didn’t dare to look down but started feeling various pricks and pulls. At one point I jerked again as she stabbed the needle out of the anesthetized range. I glanced at her but her lips were pressed together and she was immersed in the suturing. I looked up at the ceiling and thought of the countless people who had their limbs amputated with no more than a few sips of whiskey during the Civil War. I could withstand a simple sewing up of my breast, right?
The surgeon rolled her chair around to my left side. Part two of the operation. At the same moment a nurse walked in and I realized why my doctor had such an abrupt demeanor. She scolded:
“OK, Nikki, I just want you to know, this is a surgery. And I mean like surgery, surgery”, she stressed and skewered the wide eyed nurse with her eyes, “this could be done in the hospital under general anesthesia. This is not a one person procedure.”
The nurse stumbled a few steps back, then recovered:
“Uhmm…sure…I apologize, Natalie left and I was helping get other patients in the other rooms. What do you need me to do?”
“Well, for one, we are out of number four sutures.” My surgeon fumed.
I didn’t dare to announce I could feel her cut me again.
The nurse escaped the room and an awkward silence enveloped the office. I concentrated on controlling my shivering and counting the ceiling tiles. Soon, the extra anesthetic must have started working because I slowly relaxed as I stopped feeling pain.
“Are you OK?” The doctor asked.
I am now. I wanted to snap back sarcastically. But seeing the needles in her hands and thinking about my future nipples, I opted for a cheery:
“Yeah, everything’s fine.”
The last fifteen minutes of suturing went fairly well with only one or two jerks on my end. The doctor then attached yellow, disinfectant soaked gauze by sewing it to my breast. She then cut out a circle into a stack of gauze and placed it around the newly formed nipple. The whole thing got covered with another layer of gauze and a clear occlusive dressing so that I could take a shower without making it wet.
As the chair buzzed to its upright position, I thought of the upcoming five days, during which I had to keep the dressings on. I could feel the first prickles of itchiness from the antiseptic. I glanced down and saw my skin turning nice bumpy red under the clear plastic.
“Do you want antibiotics?” The doctor asked.
Hmmm. Did I? I wondered. How the hell did I know?
“Well, uhmm…I mean, I don’t have a problem taking them, if that’s what you mean?” I countered the doctor.
She looked at me for a few seconds, then turned around and said she would be right back with the prescriptions.
On the way home, I stopped by the pharmacy to fill my antibiotic and pain pill prescription and watched the pharmacy tech smirk when she looked at the doctor’s practice logo, presumably thinking I just got a boob job or some other cosmetic procedure done.
That evening I felt pain every time I moved so I opted for the pain pills. I took one and waited. No relief. Two hours later, I took another one and this time, I was ushered into the pillowy world of narcotics that gently rock you to sleep and you feel so heavy but yet you don’t care.
The next day I woke up to see that the bandages turned red in several places. Since I wasn’t instructed about what to expect, I made up my mind that a little blood was probably normal. We shall see in a few days when I go to get the bandages taken off.
Having two cancers makes you really good at compartmentalizing. Your brain transforms itself into one of those old timey apothecaries, filled with hundreds of tiny drawers and bottles with stoppers. Each drawer holds a different fear, anxiety or feeling, excitement, happiness, wonder or thrill.
You go there every day, stay all day long, and slap your own hands when they reach for the wrong drawers. There are black drawers and white drawers. All the black ones contain cancer related stuff and all the white ones hold the normal life stuff.
At night, it is hard because you can’t see anything and it is just a mere chance which drawer floods your mind with its contents as you sleep.
During the day you try to distract yourself with sweeping the front of the store, re-arranging the rows and rows of medicine bottles, weighing the new herbs, talking to people, counting the coins from the cash register.
However; there are times when there is no one at the store and you sit down on your stool and swivel around to face all the drawers on the wall. You scan the labels on each of them, a blur of dates and events. Then your hand ventures out and brushes the black drawer’s handle. You snap it back as if the handle is on fire and scold yourself for even wanting to open it.
But then you look at the wall of drawers in front of you and all you can see is black, as far as you can reach. So you stand up, balance on your tippy toes and reach high above your head for that one white drawer you glimpse. You fling it open and happiness lights up the store, meadow flower smell swirls around you and you stand there smiling.
For a while.
Then your phone rings and you are reminded of your upcoming eye cancer checkup.
Immediately, the white drawer sucks all the golden air around you back inside and slams shut.
Then all the black drawers around you start shaking and vibrating like in an earthquake, yearning to be opened.
You don’t want to do it but the black force pulls you in, like a black hole, and you sit on your chair and start pulling. One after another.
The July 2, 2012 diagnosis, the July 6 surgery, cutting your eye, the following chemotherapy that ate your eye away, the April 2013 re-occurrence, the May 2013 radiation therapy that left you stranded, at home, radioactive with a sewn shut eye for 5 days.
You sit there trying not to peek into the last black drawer in that row. But it slides open a few millimeters, urging you to continue. You feel paralyzed but yet your hands, like robotic extensions not belonging to your body, pull the handle.
A dark grey cloud of doubt oozes out and settles around you. In it, you see words pop up. Words like another re-occurrence, losing your eye, losing your sight, metastasis, no cure, few months left to live.
You try so hard to close that drawer but it grows in the meantime and it is now a deep, heavy, metal filing cabinet compartment and you are heaving it closed with your whole body, first pushing with both hands, then leaning on it with your back, sweat rolling down your forehead.
And it’s no use.
Then the first few tears fall from your face onto the ground and you slowly release the tension and give up, sliding down along the metal front, hugging your knees, everything blurry through the tears.
And you hear people coming in to your apothecary but you can’t get up, you can’t read their prescriptions. You watch them reach out to you, but your arms are lead heavy and all you can do is watch them to eventually turn around and walk out, confused and disappointed expressions on their faces.
And you sit there.
And you sit there.
And you know that you are the only one who can make you get up.
So you close your eyes and you think of the one you love to bring back the golden happiness glow into your store. You find it hard to concentrate to squeeze out all the grey and black thoughts from your head. But you try over and over again. Sometimes, it goes quickly, but sometimes you get stuck sitting there like that for days.
When it finally does work, you suddenly feel the metal filing cabinet drawer soften up behind your back, like a pillow. It becomes light and fluffy like a marshmallow and you turn around and push the drawer back. And as you push it, the drawer gets smaller and smaller until it is the original tiny black drawer in the wall of your apothecary.
And that’s when you can again go about your business. Until the next phone call, the next letter, the next appointment, the next scan.
She was trying to conjure up something normal out of my three inch orphan Annie curls that started taking the shape of Jagr’s mullet.
I watched her in the mirror and replied:
“I guess…I mean, for now, I guess I am.”
She looked at me and smiled, satisfied with the answer.
I stared at the floor.
Am I cancer free? Am I?
I have no fucking idea.
I will probably never feel cancer free.
Maybe I will feel like it during the first day or week after a clean PET scan. But after that?
The thoughts will start slowly creeping in. Is it starting to grow somewhere again? Where will it show up? And the thoughts will grow into waves of anxiety that will culminate in a tsunami the day of the next PET scan. I will not know if I get crushed by it or if I’ll stick it out high in a tree as the mad waters rush by me.
Living after cancer treatment is like walking on a path only seeing one step ahead, not knowing if the next step will take you down a cliff or onto a beautiful meadow.
Living after cancer treatment is like walking into a pitch black room, wondering if you’re gonna stump your foot with your next step or land in a soft feathery bed.
Living after cancer treatment is like clicking on an email from a dear friend that you haven’t heard from for a long time.
Living after cancer treatment is like reaching for the Bankrupt or ten thousand dollar wedge on Wheel of Fortune.
Living after cancer treatment is like walking into a muddy lake and not being able to see through the water.
Living after cancer treatment is like opening an unexpected package in the mail.
Living after cancer treatment is like riding a rollercoaster blindfolded.
Living after cancer treatment is like switching radio stations.
Living after cancer treatment is like drawing straws.
Living after cancer treatment is stressful.
Living after cancer treatment is scary.
Living after cancer changes you.
Next week is my last chemo infusion. It will be one year and thirteen days after my very first poison drip. Everybody keeps smiling at me and exclaiming that I must be really excited.
Excited is not a word that has populated my vocabulary for quite a while now.
I am glad I will not have to go back to the hospital once every three weeks and sit with a needle stuck in my body. I am glad I will not have to get echocardiograms once every three months. I am glad the port will be out. I’m glad.
And at the same time I feel nothing. The last two years with their two cancers numbed me down to a puppet that performs the motions while carefully making sure that the molten lava core of emotions stays safely cocooned in its nest.
I wake up every day scared. Scared about the future. Sometimes I can’t even get up.
I am like a car that suddenly wouldn’t start one day and after two years of repairs, I sit in the driver’s seat, wondering every day if the car will start, how it will run and whether or not it will break down out of the blue again.
I am not done as others would like to believe. I still have further treatments and surgeries, reconstructions, medications, tests, scans, doctor’s appointments and nail biting result readings. It will never be over like a broken leg’s occasional ache.
I lost all the confidence in the future.
I lost all my trust in life.
I don’t wake up every day grateful for the day like the TV cancer survivors. I don’t cherish every moment.
I don’t know how.
Instead, I wake up and fear grips me. I push it to the edges of my mind, get up and go through my day. I laugh at jokes, make smart-ass comments, do my job, take my dog out, answer people’s questions. At the same time the anxious and icy river circulates through my body, cooling every genuine feeling of happiness.
I heard a song and one line said ‘Can you help me remember how to smile…’
I need that. I need someone or something to help me remember how to smile the old way. The easy way. The real way.
I wrote this poem/song not long ago about the whole thing: