Thursday, March 20, 2014

the aftermath


When Tuesday finally arrived, my second surgery experience was a much calmer one than the first. I was ready for the wait, ready for the poking, and prodding, and sticking. I had lived face to face with pain for a business week and I wasn't afraid of an IV anymore. Prepared this time, I preformed my urine test brilliantly and awoke from my anesthesia without a single #%@^$#%. True to form, they promised me within a day I should feel "much better" with the plaque out and self-dissolving sutures to keep closed the hole they'd cut and, true to experience, my eye was just as miserably sore Wednesday as it had been when I'd awoken Tuesday morning. When I opened it, although it was as flaming red as the eye of sauron, there was light and there was color; even some blurry shapes. They told me there was no telling how much of my vision I would retain: radiation kills everything in its path, not just cancer, and my five day dance with the devil had cost me significant damage to the eye tissue and a partially detached retina. But with a colloidal laser treatment and frequent injections of Avastin (a wonder drug that turns back ocular time and damage) my light at the end of the tunnel would stay bright. Over the next few weeks the tumor would die as its radioactively poisoned DNA deflated it like little cellular suicide bombers. 

The flight home was nearly as miserable as the plaque treatments had been. I was sore, tired, jet-lagged and missed my husband so badly that I could feel each lonely heartbeat throb behind my eye-patch in my bloody eye. But I was going home. 

My fight isn't over yet, as I write this I'm still halfway in an eastern time-zone and my eye is killing me. But it hurts just a smidge less than yesterday and will be just a bit better tomorrow. In the next two to three weeks I'll slowly heal and get the results of my genetic testing to find out if I'm carrying the BAP-1, a genetic marker that will mean I'll spend the rest of my life afraid that cancer is around the next corner. I'll see an oncologist on this side of the country who will poke me and prod me again, scan me, xray me, and examine me until we are sure that I'm out of harm's way, at least for now. But right now, I'm taking it a step at a time. I have my family, my husband, and my eyes and even through just one, the world has never looked brighter. 

Radioactive plaque treatment (or OHMYGOD what have they done to my eye?)

The next 5 days were some of the most miserable sunrises and sets I have ever had the the displeasure of experiencing. Due to the size of the tumor in my eye the radioactive plaque disc was 20 millimeters in diameter and inserted behind the conjunctiva in order to target its little death rays at the mushroom shaped cancer sac causing so much trouble. This meant stitches. In my eyeball. Also one tricky, itchy, panic inducing suture or so through the upper and lower lid to keep it closed over the plaque while it did its cancer-killing thing.

They had warned me the first two days would be rough ones but had promised me really good pain pills and certain relief by the third or at least fourth day. As I am naturally an optimistic positive person (this is a lie) I foolishly believed them. The morning after surgery I awoke feeling as if half of my face had fallen off and been replaced with an itchy, fiery, excruciating tape ball. This was followed by the realization the oxycodone (or as we fondly refer to it, percocet) is a wonderful appetite suppressant and a terrible eye pain killer. It made me sleepy and my left eye all squinty but had about as much of an effect on reducing my eye pain as a magical kiss does for a scraped knee.

Despite repeated promises of healing, adjusting, and recovering, the following days were a blur of painkillers, xanax, HBO on demand, and waking dreams. I had no appetite and shunned the outside world after a particularly unfortunate breakfast experience with one rather precocious child who was quite enamored of her "mommy mommy what's wrong with that lady's face" act that put me off my English muffin and sent me running back to the shelter of my secluded queen bed in tears. The tears dried and then mixed with the ointment and blood seeping out of my bandaged eye, matting my eyelashes which inevitably worked their way inside the lid and stabbed at me when I tried to rub out the maddening itching of the sutures. Reading was out of the question, writing was out of the question, anything but lying in bed and existing was out of the question. Each time I looked right or left with my good eye, the injured one tracked with it, the disc tearing a new path over day-old healing. I developed an aversion to all food. My mother went from the Amish market to whole foods to target, searching out cheeses, fruits, and junk foods to tempt my appetite, largely to no avail. I subsisted on apple juice, tangerines, and cheez-its but my main food group was pain killers, which I optimistically continued to take every 6 hours despite their ever diminishing effectiveness.

Despite the misery, the days were not without their bright moments. The good wishes from friends and family were overwhelming; I felt more noticed and loved than ever before. Flowers, cards, and some particularly delicious chocolate strawberries arrived, reminding me that life was beautiful and delicious, even if looking at the colors hurt my eye. The hospital had arranged for us to stay at the Hilton Garden Inn, which housed all of their radioactive plaque patients and was staffed by people so good and decent they must've been angels in disguise as front desk agents and waiters. The day after my unfortunate breakfast confrontation our waiter, who'd brought us coffee and orange juice and never flinched once at my bandaged face, tracked us down using our breakfast vouchers and hand delivered an incredibly sincere get-well card to the room when he noticed our absence the following day. It was signed merely, "your server, Eric" but to me represented one of the most powerful gestures of human kindness I have ever experienced. I wasn't allowed out of my room for fear of contaminating the world with my radioactive footprint (eyeprint?) but the cleaning lady stopped by every day anyway, she gave us extra shampoos and lotions on the sly. She knocked to check on me when she knew I was on my own and her motherly presence was probably more healing than my percocets. Through those 5 days I suffered but also came to a new understanding of the basic goodness of people that I had lost somewhere along the path of my 24 years.

Tuesday, March 18, 2014

Surgery day

Wednesday night I slept around two hours. Oddly, I slept deeply, free of the xanax nightmares and percocet waking dreams. The wake up call shrilled at 5:55; in discord with our barrage of apple devices shrieking in tinny harmony, an atonal prelude to a day that would prove to be no less easy on the ears. It was the first time I'd worn my XL sweatpants and UW sweatshirt out into to harsh light of day since sophomore year and I found myself wishing I was just running late for another constitutional law class.

My mother asked me how I was feeling.

I looked at myself through the dim wedge of light left in my right eye.

"like a cancer patient getting ready for surgery"

I whipped my hair into a french braid and gave the mirror my fiercest scowl. If they'd let me I would've shown up in full warpaint and feathers too. Because I'm a fighter.

My race was set to go off at 6:30 and we panicked when we drove up to the parking garage gate. Mom had lost the ticket and her hands shook as she tore apart her purse looking for it. The same thought resonated in our heads: "please please please" because who was late for surgery because of a parking ticket? After a millennium or so, the slow eyed attendant deigned to open the speaking grate and we begged and pleaded our way to a room charge on the parking stall and held our breath as he spent 5 minutes manually opening the gate. We zoomed out and parked in the first garage we saw near the hospital, we arrived breathless at the check-in desk at 6:31 where we signed our name beneath an unbelievably long list of other patients. I read down with a sinking heart: they were here for the same treatment. I hit the bathroom and left mom to wheedle our wait time out of the stone-faced receptionist. When I returned and plopped down in a seat, she told me I was second in line. I just nodded and looked dour-faced at the depressingly full waiting room.

Ten minutes later I was afraid and 20 minutes later I was sure the rest of the room could smell the terror coming out of my pores. Thirty minutes later my headphones were in and Les Miserables was on full blast. Then Tupac. Then Yo Yo Ma. Then Pitbull. Anything. As loud as it would play. By the fifty minute mark I had decided that I should really discuss with my therapist my decided tendency to deal with fear through extreme anger. By the hour mark I hated every living being in the room with a hatred so strong I had to visibly restrain myself from assaulting the little old ladies across from me discussing the (inaccurate) urban legend of Mr. Roger's alleged sniper kills during the Vietnam war. Ten minutes later when one asked the other if she used mustard in her egg salad I wanted to stomp on her head (for the record I don't feel one way or the other about egg salad, mustard or no).

Luckily for the little old ladies (and everyone else in the room), they called my name and I leapt up expecting to be taken back into preop. Instead they seated me in front of some overgrown boyscout with a very straight side part and crisp polo under which he had inexplicably worn a very awkward looking long-sleeved undershirt. I restrained myself from informing him of this because I have a very good sense of what is socially appropriate. He went over the same information the nurses had told me the night before then called to confirm. My blood pressure rose incrementally with every page I signed and I was apoplectic by the time he told us it would be "just a little while longer" before they called me back. I was considering asking for a voluntary straitjacket when dropped the real bomb. In an embarrassed, red-around his stupid polo collar kind of way, he pushed a folded white paper notice across the table at me and informed me uncomfortably that "ladies of a certain age" were required to submit to a urine test before going into surgery.

I hit the roof.

Through all of the many written instructions we'd received, walk throughs and recaps, no one had mentioned a urine test. They had, however, been diamond, laser cut, crystal, 20/20, windex streak free finish clear that I was not under any circumstances to eat or drink ANYTHING for the 12 hours preceding my operation. Which meant that my pit stop to the bathroom immediately following check-in gave me about a 2% chance of having any passable liquid left in my body. After I'd silently counted backwards from a million and visualized throwing his computer across the room (spoiler alert: that was the pg version, upgrade to Bigbadphillytrip pandora professional for 4.99$ a month for an ad free experience and the gory details of what actually happened to Mr. boyscout that morning) (second spoiler alert: just kidding no boy scouts were harmed in the making of this blog). I asked him calmly what would happen if I was unable to comply with the urine test. It was the kind of calm that made his perfect part frizz up a bit as he told me I would have to drink something, wait for it to pass through my system and delay the surgery another 6-8 hours as his eyes involuntarily started scanning the room for immediate exits. I signed on the dotted line and went back to my seat hoping that the next time he put his nice polo in the wash it shrunk to the size of a hand puppet.

With my head full of vicious thoughts about Mr. Boyscout, the little old ladies were safe when we returned to our seats and waited another half hour before we were at last called into pre op. My well meaning nurse ushered me into a holding stall and sent me into the handicapped bathroom, cheerily assuring me that she believed in me, which made me feel like a toddler out of a pampers commercial. I sat. And I waited. First in hope. Then in Fear. Then in Anger. Then I looked at my empty pee cup and cried. My nurse knocked hesitantly on the door and asked if she could come in and help. Through my despairing sobs I wondered what she could possibly have in mind. I decided not to risk it, threw the empty cup away, washed my hands and face and stepped out to face my disappointed nurse.

At this point, things could've gone either way if it weren't for the arrival of another nurse who regretted to inform us that the plaques (the radioactive contact lenses they sew on your eyeballs to kill tumors) were delayed and would not be arriving for another hour. This eliminated the "either" part of the going and things went south fast. My angry barrage of "why didn't you tell me about the goddamn test" and "can't anyone find me a goddamn xanax" was cut short by the whirlwind arrival my my surgeon, the great an terrible Dr. Shields who, unbelievably, was even more furious than I was and not the least bit afraid to show it. Now normally, as I am in management and believe in the basic dignity of all (or at least most) human beings (I'm looking at you Mr. boyscout) I am adverse to the public admonishment of superior to employee. But in this case, terrified beyond human endurance, and hysterical over my inability to urinate, the scathing barrage of fury she let rain down on her team behind the thin curtain separating us from the masses was sweet music to my ears. I made me feel impossibly, ridiculously, unfairly better that she had shown them the wrath. I don't think I could've even done it better myself. A moment later she stepped back onto my side of the curtain, apologized politely and curtly for the delay and told me I could say "aloha" to my tumor within the hour, before turning on my trembling resident to order up the anesthesiologist to get me something to calm my nerves. He arrived shortly thereafter and kindly agreed to forego the pee test then ran me through the usual list of allergy questions before summoning up the nurse for the IV.

The one blessing of the endless delays was the extra time spent in my hospital bed, which meant I got to call my husband and hear his voice before surgery. His inability to travel with us had left me feeling desperately lonely and I must've told him I loved him a million times before I hung up the phone. As the nurse prepped me for the IV and then stuck the needle in ("ok big pinch honey"- like I mentioned, all Wills eye hospital employees need a refresher course on the proper use of adjectives and descriptive nouns) I stared fixedly at our wedding picture while the tears rolled down my cheeks. We looked so happy, it was our first kiss photo and my hair looked dynamite. The horse tranquilizers were running through my blood stream before my tears had dried and I spent the next 10 minutes tunelessly singing Johnny Hartman's "lush life" under my breath, somewhere far beyond my pink fog in lala land. The anesthesiologist returned and I have a vague memory of people, things, and words, before time ceased to exist.

When I awoke, the terror of the waiting room came surging back, coupled with a fresh, fun, new fear: they had wanted to "wait to see how I felt" when I woke up so I felt very keenly the poisonous metal contact lens behind my eye and even more clearly the sutures that had held my eye sewn shut. This made me feel like I had awoken in Saw XXIVVI: eye hospital edition and I officially lost my mind. I clutched my eyes and hollered about how I couldn't open them, I screamed at the nurses and god and the world and was generally belligerent. They forced a percocet down my throat and got the hell out of my way as we staggered out the door and into the friendly 10 degree Philadelphia weather. I don't recall how long it took us to get back to the car but I do recall staggering around (and through) the streets like I'd just downed half a bottle of gin and poured the other half in my eye. I also vaguely recall the very inventive and prolific strings of profanities that I managed to holler out the whole time with a breath control that would've made my high school voice coaches proud and appalled my poor mother who should really be nominated to sainthood. We finally reached the car and after a few more slurred "don't touch me"s I made it inside the vehicle although not, as I recall, in the manner the manufacturer had probably intended a person to sit in a car. When we made it to the hotel and up the endlessly long 8 floor ride in the elevator, our door seemed to magically appear before me and I collapsed, face first Hollywood style into bed, where I knew nothing more of the world.


Monday, March 17, 2014

waiting:day 2

On our last day before the surgery, we endeavored to see a bit of the city before I would be confined to my four white walls and various Apple media devices. We started the day with yogurt (which I hate)  then said our goodbyes to the wonderful Ellyn, our host mother who had been so kind to us, and jetted off in our rented Ford fiesta to find new adventures. Our first stop was Target, the world's second happiest place on earth, and if you ask me, definitely the world's most dangerous. There's never any telling what that red eye of sauron (I mean savings) might compel you to buy while you're inside and nobody ever leaves with just toilet paper. I buried myself happily in the book section and came out with an armful of winners. The pamphlet on (i kid you not) surviving 5 days of radioactive plaque therapy recommended bringing between 2 and 5 books, noting that more than 5 was optimistic. This gave me the giggles but I kept it to four and we made it out the red doors safely with my books, a rom com, a box of cheez-its, trail mix, kashi, and some almonds. Altogether the equivalent of coming out of mordor with all your limbs attached and a commemorative postcard.

From there we trekked down towards the hotel, managing to go 40 minutes out of our way to a different Hilton garden inn (this on rather far outside of town( which sent us back towards our real hotel via the scenic route through old Philadelphia. Everything was very old here, brownstones had weathered generations upon generations before being boarded up and pasted over with this weeks concert offerings. We passed chicken joints and soul clubs, mini marts and churches. Really churches upon churches upon churches before we decided on a whim to stop at the aptly named "our lady of hope", a beautiful old stone cathedral with towering stained glass and a bone white virgin in the courtyard looking over an equally weather-bleached Christ on the cross sporting a blazing red heart in the center of his chest.

We stopped in on the off chance of finding someone there on mid-Wednesday afternoon and to our surprise, were met by a short Filipino father, his moon face beaming good-will as he welcomed us into his church. We requested a sacrament of the sick and his face lit up, he explained we must be practicing catholics if we knew of such things and ushered us into a small side room stuffed with floral prints before scurrying off to gather what he needed. He returned a moment later with his scriptures and a pill box of holy oil and we bowed our heads in preparation for the sacrament. Through his accent, he had a strong sweet voice through which radiated an earnest hope and goodwill as he called for blessings, intercessions, and healing on my part. Head bowed on that overstuffed flowery love-seat I felt tears in my eyes, tears of shame that I did not live my life open to the fullness of goodwill like the little priest, tears of gratitude that he turned that goodness like a light to illuminate my life and pray on my behalf, a stranger he didn't know. We prayed together and I didn't make any promises. I didn't bargain and I didn't plead. I said the words and felt the centuries-old comfort of speaking to a consciousness outside your own, a way of elevating your wants, and desires, and fears to a faceless power that may or may not answer. The relief that never comes of that answer or answering silence but rather from having laid those burdens at the feet of an alter upon which you judge your faults and achievements. And as he marked me with the sign of the cross on the brow and my palms, I felt at peace. We spent some time in the cathedral's sanctuary then, a huge stone building half fallen into disrepair but none the less beautiful. We stood in the dark, the beautiful grotto of the virgin on one side, tarps down to catch rain from a leaky roof on the other. I thanked the stones and the statues for waiting for me, thanked the invisible presences for listening to me. Then I entered the little chapel, stood in front of the sacrament and thanked god for bringing me to that little priest, for keeping an eye on me even as I Miley-Cyrused my way through life, sticking my tongue out at the world. As we walked back to the car, I was glad we had stopped, I felt the oil on my palms and felt a little less scared.

  We finally arrived and dropping our luggage headed back to the fiesta-mobile to experience some of the city of brotherly love. We stopped first by the Barnes foundation, a private collection of impressionist artwork by the outrageous Dr. Barnes who had dared to get filthy rich and buy up European masterworks. When poo-poo'd by the creme de la societa of Philadelphia as noveau riche and generally gauche, Barnes had thumbed his nose at the lot of them by building a large geometrically confusing building a stone's throw from their classically styled art museum and filling it with an impressionist collection rivaling their hallowed galleries. We had it on good local authority that this was the place to see, so circled its perimeters a time or two trying to find its je ne sais quois entrance. It was all for naught however as the gallery had been rented for a 4 hour long private function. I was willing to give up until I heard that the function was accompanied by an equally 4 hour long open bar at which point I told the attendant very solemnly that I had cancer, was due for operation in less than 12 hours, and it was my last wish to see the dancers of Degas with a dry gin martini with a twist in hand before I left this world.

There must've been some pretty heavy hitters in for the gala because he still said no.

From there we proceeded to the Franklin institution which, for my seattleites, is much akin to the pacific science center but on east coast crack. A large banner outside advertised a visiting gallery of Pompeii artifacts and the institution was known as the countries' largest planetarium so we jay walked across the eighteen billion lanes of traffic in a philly roundabout only to find we had arrived on "community night" during which all interesting exhibits are closed and screaming children pound on the Plexiglas surrounding old space suits and leave germs everywhere.

We made a perfunctory turn of "space command center" before making our exit and heading towards the art museum. The Philadelphia art museum is quite an impressive building in that it looks like a courthouse and has much more valuable things inside that courthouses generally do. We walked through the centuries, discovered depth along with the early renaissance masters, oggled at the few francs a destitute Renoir had sold his painting of a young girl with the most expressive eyes, and found peace in a 14th century Moorish courtyard, where I used my google skills to cross reference zagat reviews and local paper write ups to find us the perfect Italian restaurant for my farewell dinner.

When we left the museum it was pouring down rain. While I had not elected to run up the famous Rocky stairs when arriving I sure cut a speedy figure running back down them museum map over my head as we raced for the car drying to dodge raindrops. When we finally found parking and set out for the restaurant I was better prepared and did the mad block and a half dash with a plastic target bag firmly anchored around my head.

The interior of Osteria, one of Philadelphia's best loved and reviewed Italian restaurants the atmosphere was warm and dry and staffed with the kind of classy people who don't comment on the fact that you look like a half-drowned rat with wet shoes that make squelching noises as you follow them to your beautiful corner table. In spite of the fact that I had left my ID and wallet in the car the dinner turned out to be absolutely fabulous. Our warm knowledgeable server walked us through a menu that was so haute cuisine I had to surreptitiously google under the table a few times and we settled on an antipasto verdure that transcended the world of pickled/roasted/grilled vegetables. Our palates were regaled with a variety of house breads from the crusty to the crunchy all to be enjoyed with salt roasted beets, pancetta grilled brussel sprouts, pickled chickpeas, oil poached cherry tomatoes, garlic roasted cabbage, and chilli pickled fennel topped with an arugula salad and pecorino. Once we had made short work of these we moved on to first a dish of transcendent goat cheese and beet plin in a light tarragon cream sauce, folded from pasta so light and thin as to make phyllo dough blush in shame, and then a rustic potato and sottocennere tartino, a haute cuisine mash of potatoes, truffle cheese, and butter, with a light crust wrapped in a radicchio leaf. We finished dinner with that glazed look of fullness and stupefaction at the sheer scrumptiousness of the plates that had been put before us. We took a stab a dessert but couldn't appreciate our respective confections on so full a stomach and so ended the night with a sprint back to the car which very nearly gave us cause to bring it all back up again.

Once back in the hotel, we had the opportunity to speak to my family over skype and it was truly comforting to see their wonderful faces, say goodnight to my husband and look into his eyes when I said I love him. The next morning came tromping on, ticking minute by minute closer, and we whispered promises of the future, thoughts of better days, memories of days we haven't made yet, and that night, two hours before my own personal little apocalypse I fell asleep, wishing I was holding his hand

Sunday, March 16, 2014

waiting:day 1

The two days following my diagnosis were slow ones. Emotionally over-cooked and hanging on to the slippery edge of consciousness with tired fingers we arrived at the home of Ellyn and Steven Stern, a lovely jewish couple who were opening their homes to us as visitors through a program with the hospital.

Once I had passed on the all-together overwhelming news of the diagnosis to my family and my husband, I popped a xanax and watched myself fall through the blue aquarium waters of consciousness, leaving a trail of little bubbles behind, not unlike watching sad sea creatures from behind plate glass walls at the zoo; Just a flash of life in big alien eyes before slipping down into a deeper more forgetful depth. I vaguely recall moving through the motions of formal introductions upon our arrival, I focused very hard on getting out the right words in proper order before hiding from the world from beneath a home-knit blanket and promptly surrendering to a wooly grey sleep that asked me no questions.

I awoke in a room of forgotton childhood, various pinks here and there, hippos with ballet shoes and baby pictures, of childhood photos and books. I got up and dressed as it seemed to be the thing to do, then did my best to avoid and ignore everything around me with the exception of the penny-thriller I had picked up at the airport. My mother eventually got to me, we were up and out of the house and down a brisk lane to the philadelphia equivalent of a wealthy suburban strip mall. We ate lunch at someone's idea of a Panera bread where we contemplated what we might do for the day. The conversation seemed to circulate upon her whishing to know what I might find fun and me wondering what I might possibly want to think about wanting to do. We settled listlessly on the movies, and found the conversation envigored for a moment when I gave her a spirited recount of a pair of troublemakers i'd had to deal with earlier in the week. It seemed xanax was not a strong enough depressent to depress a servers indignation at being berated, complained about, then walked out on (the antichrist trifecta), which made us both a little less worried that I had been reduced to the emotional capacity of a sea sponge.

We arrived at the movie (monuments men) ten or fifteen minutes late but I didn't mind. While I've never considered pursuing any kind of life remotely involving motion pictures, the movies have often been my escape. The darkness and the anonymity call to me; nobody can find me in the movies. Unlike books which need light and air, nobody can yank me out of a corner nook mid day and say "look who I found with her nose in a book" or "go *insert task here*!". At the movies beautiful people do and say the most perfect things. The lead always listens to his beau's impassioned speech on fidelity and mortality; its only on tv shows that he turns up the ball game and the staged audience loses their heads. In the movies the timing is perfect, no one comes home to a surprise birthday party only to say "well sorry my flights out to australia in an hour!". So there, in the movies, we saw the poignantly noble and different band of merry picture hunting men tromp across Europe to find the great masterpieces. We sighed at the losses, felt emboldened by Cate Blanchette's oh-so-french insouciounce, cried when they found the madonna they had so long searched for; and for a moment I forgot I had cancer.

Since we had failed to decrypt the wi-fi password in our host home we went to that omnipotent and always beckoning beacon of free internet and caffiene, the local starbucks which was sandwiched between a Manny's deli and a Rosenburg's wine shop and judaica. Our host mother had mentioned we were right smack center of the Pennsylvania Jewish communityand looking around, it appeared we'd hit the very epicenter.

As I was feeling rather uncommunicative, so I skipped the java and headed next door. Although Bala (the little town within a town) was jewish through and through not even they had escaped the scourge of stripmalls everywhere: the korean nail salon. I signed up for a pedicure and was surprised to find myself plunked down in a knobbly vibrating chair by the best looking korean man i'd ever seen. He looked a little like the most recent asian GI JOE villain but with better hair, a nicer smile, and arms that were bigger than my legs. I was a little off beat-I'd never had a male pedicurist and so stuck my nose in my book and tried to get used to the devilishly hot water that you always say is "hhhhhhhhhhohhhhh ya just peeeeerfect" while you check your feet for heat blisters. I was well settled into the comfortable routine of foot scrubbing and trying to think about something terribly tragic (like...oh...my own cancer) while he scrubbed the bottom of my feet which normally results in highly undignified giggling and twitching. Then the massage started...and I forgot about the rest of it. Turns out my pedicurist was also the resident masseuse and was so sucessful at turning me into jelly from the legs down that I started daydreaming about the temple at the top of the mountian deep in the forest of Hollywood's mystical asia where he learned to secrets of the pedicurist brotherhood, passed down by generations of warrior monks and little white haired ladies with hairless arms and perfect eyebrows. When I let out an involuntary "thaaaaat feels sooooo good" he smiled in a particularly zen way and told me I should come back for a full body massage while the little old lady in the back room practicing waxing cackled "He da best, make all the ladies come back for da massage" and wiggled her toes at me knowingly. I told him politely that while I would love to return again and again to his magic hands I was from out of town so would be unhappily unable to do so. He asked me where I was from and I told him Seattle, much to the excitement of the older woman in the other room. She came running out, her popsicle stick trailing sticky wax behind her to ask "where" in a particularly excited manner to which I replied, "Seattle, aaaaaall the way on the other coast". She smiled kindly and nodded excitedly "Yes yes Seattle, I lived there, where you live?" Mortified that I had assumed she was looking for a geographical answer not a comparative one, we established that she had relatives who lived in a somewhat general proximity to my family which seemed to please her to no end. She asked why I was visiting Philadelphia and things took a turn for the morose. I tried to keep it casual at first, mentioning that I had come to see a doctor, to which she impatiently replied that many many people were coming to her town for a doctor, what doctor, and why was he so good? I felt the lump in my stomach stretch and yawn and climb right up into my throat and came clean. It broke my heart to tell the truth to the cheery lady and her adonis peducurist. Their faces fell in tandem and I thought she might cry a little as she lamented on my youth. the foot rubbing extended a good few minutes past what was required by pedicure law, he was a river of calm, pushing good vibes up my calves while he told me god never gave us more than we can handle, his open honest face made me cry and the lady had a tissue under my nose in a jiffy, stroking my hair and promising all would end for the best. Together they soothed and painted and fussed me into a chair at the foot dryer where my GI Joe gave me a free shoulder massage to help flush out toxins pre surgery and sweetly wished me the best before shouldering his pack and heading home for the night.

I rejoined my mom and we headed home to the sanctuary of Ellyn's well decorated foyers and nick-nacks. I slept knowing that the next day would be my last chance at denial.

Thursday, March 13, 2014

the diagnosis

A few days before I went into the eye doctor, a new couple moved into the house right across the street from us. I met my new neighbor on a Tuesday when she came a-knocking to inquire after a lost cat that appeared on her door nonchalantly a day later having taken some extended kitty-vacation time. The house where they live is much higher in elevation than ours as we live on the side of a hill; from my mailbox I would look up a steep incline and set of stone stairs to the balcony/deck of her front door next to which they had an irish flag proudly flying.

On that fateful thursday I arrived home from the eye doctor stunned and floating on my pink cloud. I unbuckled my seatbelt, opened my door, stepped out, happened to look up....

and there it was.

My new neighbors had hung a new flag from the center of their balcony, freshly hung from the look of it. It was a black background with a pirate's skull and cross bones snapping proudly in the brisk, entirely uncomfortable February breeze. This Jolly Roger however, was special. It grinned at me with an empty black smile but instead of two black eyes, this little charmer stared down at me with one eye, his right eye covered by a white patch. I stared him down with my good eye, left eye glaring at left eye and finally relented to life's little joke. I smiled at the Jolly Roger- "you and me both buddy".

Monday was ten times worse than any surgery could possibly be.  We arrived in the clinic bright and early at 7AM where I expected to sit in the waiting room next to the crickets who would certainly be chirping to break up the silence of a doctor's waiting room at such an ungodly hour. As we stepped through the elevator doors of floor 14 however, I was greeted, to my horror, by a sea of eye-suffering humanity, fifty or so people in total who had arrived more punctually than I, aaaaall waiting to see the same very important person.

After an hour and a half or so of waiting to be called, most of which I spent wondering exactly how many North Korean torture specialists they had flown in to be on the task force to create the uniquely excruciating purple chairs in the waiting room, they finally called me in and plopped me into a closet with a curtain where I read (or failed to read) more letters off of walls. Then my nice guy-tech dropped me off in a smaller, squarer exam room where I waited again, giving me time to flesh out my hypothesis that it MUST have been North Koreans, for only a society on the heels of three egomaniacal dictators and centuries of refined torture under various emperors could they have created something so just-uncomfortable-enough as to make white suburbanites like myself feel like they're in socially acceptable stress positions.

Then all at once, busy with my conspiracy theories and halfway through a James Rollins book, my doctor took me by surprise, bearing down on me like a gale force wind. She was a tiny, birdlike woman  with an energy that belied her advanced age and a handshake that could shatter glass (Shannon Sheron would've been proud). Behind her scurried 5 minions, all most likely brilliant in their own right, and all buzzing about her in that particular kind of terrified way that you last saw on silver screen in the devil wears prada. She introduced herself as briskly as she'd shaken hands and peered into my eye. "More dilation" she announced, "two more drops". I made the mistake of mentioning I hadn't been dilated in the first place and the room went still in horror. She swept out almost wordlessly, as quickly as she had come and I thought I heard someone call down the long corridor "heaaaaaaaaaads wiiiiiiiiiiiill rrrooooooooooollll" (I might have imagined that part). One of the minions came back and dilated me and after another half hour or so she arrived and picked up where she had left off. We went through the normal routine of light shining and look-rights-lefts-ups-downs, then she took a seat at her desk where a diagram of an eye was waiting for her notes. The most privileged of the minions stood directly behind her shoulder and held her colored pencils as she barked "red!" "brown" and filled in particularly important veins and iris pigmentations on her diagram. I imagined that the girl must have nightmares about handing her the wrong colored pencil one day as I dream sometimes about constantly forgetting my customer's orders.

Once she had finished her diagram and my pupils were larger that a heroin junkie's she preformed more tests all of which "should be comfortable" which, judging from the chairs, I should've know to be a lie. One particularly painful poke to the eyeball with a camera later and I let out a large theater-worthy gasp, which set the minions racing for more numbing drops and I was off the hook for a while. She explained that I needed to go through a barrage of testing and photos which would take between 6 and 8 hours at which point we would rendezvous to discuss the diagnosis. This began with a woman in possession of a large lensed camera taking pictures of my face at closer and closer intervals. I stared at the camera with my very nastiest look, the one I reserve for customers who complain about me or people who annoy me on public buses. I was hoping to break the camera but it was a Nikon, so no luck there.

 Then commenced another few hours of waiting, during which I got much farther into my book and incrementally closer to rupturing a disk in my back on the purple chairs. Finally came my last group of tests during which I had to assert my independence as an adult and refuse a peocedure that sounded suspiciously non-critical that involved injecting dye into me and paying a large chunk of extra money out of pocket. I hate needles and more importantly had been warned that the dye might turn me "slightly yellow". Needless to say I had already come to the conclusion that Wills eye hospital was very good at diagnosing and curing eye conditions and very bad at accurately using their adjectives. I had been listening to other lab techs pitch said test to their respective patients and from the corner of my ear had discerned that the test was not technically vital so stood my ground when my tech tried to press. This made me feel like I was fighting the man. I soon realized that this had been a mistake when she laid me back in a chair and said "now for this last test....." and proceeded to numb my eye, clamp open the lids, fill the open eye with gel and plop a very large, vaguely pointy, camera directly on the eyeball. I took 4 deep, dignified, centering, yoga breaths  before completely hyperventilating as something began to poke me and squeaked that she "needed to get this thing off me. NOW". My perky torturer-in-training did not like this and informed me, annoyed that if I were to "just go and panic like that again" I would scratch my eye. The poke had really hurt and the machine squishing my eyeball was very large. I felt justified in my panic. I gave her the same look i'd given the camera and envisioned ripping off her brown pony tail and feeding it to her for a second. Then in my best Robert DeNiro impression I shrugged, wiped my gel-y teary eyes and stalked out hoping she slipped and fell on her way home. They let me back in with the general population and I saw an old lady make a sign to ward off evil spirits when she saw my face (this is a lie). My saintly mother fetched me a breakfast sandwich and and orange juice from Starbucks which I devoured like a famine victim, pre-frozen egg product and all, feeling like a character out of a snickers bar commercial. Clearly I was not myself when I was hungry.

It was not too long after (in Wills eye clinic standard time that is) that I was called back into an examination room and remarked to my mom that we were really superior to the average patient and had made it through our ordeal in around a mere 6 hours. It was at this point that I should have remembered my own advice in the previous post and kicked myself for prematurely expressing positive conjectures. Or at least I should've knocked on wood... although in that mecca of formica and sheet metal the closest I would've come would've been my own skull. First I was "next" the "after the next two people" then "next again". When my original tech came in to dilate my eyes (perhaps to make up for having forgotten originally?) I came close to a tantrum when I explained to him that we were waiting for a diagnosis, not just beginning the process. He left the room, having lost his head and roses to the red then white queen in this crazy wonderland and at last, after 2 hours, Dr. Shields again swept in with her posse of junior geniuses.

Petty frustrations aside, I knew the moment we had come for had arrived and I did my best to look less hostile and more like a brave adult, not a little girl who cried when you poked her with eye cameras. She told me the tumor was the size of a pea, and like the infamous occupant of the princess' mattress, this one had big consequences. Only this time I was the princess, the one no one hears about, who had NOT felt the pea beneath those 70 sertas, I had finally come out a loser.

She told me it was a malignant melanoma, a large one as melanomas go, and that my choices consisted of removing the eye or attempting a radioactive plaque treatment; a fairly non-invasive completely brilliant treatment (that I believe she may have had a hand in creating and implementing- she really is THE best)  that would put me out of commission for a week but most likely leave me with a viable working eye afterwards.

Now this left me in a tricky position: knowing I had cancer terrified me in a way no pink mist was going to carry me away from. Hearing you have cancer turns your insides into the kind of emotional 4 year old who promptly pees themselves or puts their hands over their ears and yells "no no no!". But looking back on my life in a millisecond, all my triumphs, failures, flaws, and features, my eyes were the only thing I could remember always liking about myself. It felt unbearably, unfairly, hugely impossible to lose such a thing. Who would say I had a beautiful "eye"? No one sings "you with the stars in your...eye"? Jeepers, creeepers, where'd you get those....peeper? It wasn't even grammatically correct.

When I came back to reality, less than a beat had passed and I stared at her with the all of the combined power of those two eyes as she explained the process of the operation, its success rates, and side effects. I stared so hard I thought I'd zoom in on her pores any second. I focused on not crying. I refused to melt down in front of Dr. Shields and the junior geniuses. I didn't move, I didn't breathe, I didn't swallow. Only four tears fell during that diagnosis and I hated every one. I reasoned that they had fallen less than one per 60 seconds and forgave myself. A well-meaning minion handed me a tissue but unwittingly stepped into the path of the hard stare and was vaporized (not really).

I kept waiting for the fog, where or where was my pink fog to take me away from this? She was telling me that her first priority was to save my life. Her second to save my eye. Her third to....well I don't remember the third one, I guess it was really more on her list than mine. I was mostly about one and two. She was asking me which course of treatment I wanted to pursue.

No question.

The operation.

She was telling me about injections I would need in my eye to help it recover from the radiation every four months for 2 years. Needles. In my eyes. More than once. And the goddamn pink fog was no where to be seen. In the absence of emotional lockdown, once we had made it through all the necessary dialogue I did the next best thing.

I asked her for xanax. In her defense she was neither surprised nor did she crack a smile, which is notable because I had asked in the same voice someone else might've politely requested her to pass the tea. Every vowel in place. Every consonant enunciated. I wasn't afraid (I was scared shitless) and I was going to make sure she knew it. Dr. Shields poked people in the eyes and played with eyeballs for a living. She was the best at it. And as she clearly had no gag-reflex I could go toe to toe with her on stiff upper lips. Or eyebrows. Or whatever. I would let her put her poisonous contact lens in my eye and sew it shut for a week. I would take my eye shots like a pro and then someday when I was done beating cancer and rich and famous I would swoop in with my own army of minions and bring her a bouquet of some exotic flowers that look like eyeballs in thanks.

And we would scowl at each other in mutual understanding. And I would know it had been worth it. Maybe I'd give her that Jolly Roger flag too.



Sunday, March 9, 2014

arrival

In today's episode of the lifetime movie networks "first world problems" we find our hero (me) having slipped into a semi-adultesqe lifestyle. I was up one wonderful husband, one cuddly black cat, one job well on its way to inflicting lasting damage to my emotional stability, and one 12 month lease in a house of questionable living quality. All in all I was coming up on 25 and felt like I laid down some pretty solid groundwork on the scoreboard as the first quarter came to an end.

I have for a very long time, had a vague suspicion that making statements like that one invites nothing but trouble. Perhaps its a paranoia brought on by reading too many books and investing too much time in movies and serial television shows. Maybe its a slavic fatalism inherited along with my polish/bulgarian roots. Regardless of the source I walk through life knocking on wood and throwing salt over my shoulder because hey? Why not be on the safe side. Logical or not, this mentality seems to have gotten me through life pretty unscathed. Attribute it to my salt throwing, divine providence, or perhaps that I tend towards the cautious (with the exception of one unfortunate roof-jumping incident that effectively squished my disastrous leap towards risk taking). That said, the fact remains, in spite of my disproportionate intake of crime dramas and John Grishm novels, the dramatic and the terrible seem to generally bypass my quiet little cul-de-sac of life.

I have worn glasses or contacts for the majority of the years of my life that have counted. They were a great source of chagrin in my awkward "stage" of late childhood/early adolescence/late adolescence/early adulthood, but had become more like a nuisance by the time I reached my "truly adult" 20s; an expense for contact solution and lenses, glasses to wear at night when absolutely no one would see them, etc. When my vision got worse it did not particularly alarm me, even the big, red, angry veins in my right eye seemed like a result of 10-14 hours a day lens use. After my vision began to  become cloudy, like one of those claritin commercials I knew something must be up.  Some days I spent as if I was looking through life through a film, like a lens with a big finger print on the surface. Since I am a responsible adult I only waited around three months and two google searches on my symptoms (which brought me to the logical conclusion that I had no fewer that 5 serious communicable diseases and conditions and was, in fact, already dead) before I walked into an eye shop owned by a friend and old co-worker who owned a local eyeglass shop. In the little closet of an office a very serious professional young eye doctor showed me a long parade of letters of varying sizes before moving on through the litany of "this versus that" that determines your eye perscription. I expected him to tell me that I was just getting a bit more blind. I expected him to tell me that the little black area at the top right of my field of vision in my right eye was my eyebrow and I was being crazy. So when he pushed his chair back and said that it was a retinal tear or a tumor I nodded doubtfully as if someone had just told me man had discovered life on mars and then squinted through dilated eyes at him to see if perhaps I had heard him incorrectly. When I realized he was serious, a sort of pillowy perplexing fog seemed to rise up and trickle through my brain like nerve gas. A retinal tear? A tumor? That meant surgery or surgery. I went home and told Gilson in tears. Then the pink fog took over and I wondered numbly if perhaps while they were down there they could just zap my lenses as well, a sort of two for one tumor sucking, lasiking deal. Did they sell groupons for eye surgery?

I should've known when they had me in the UW eye surgery clinic less than 24 hours later that a 2 for one eye slicing special was probably a bit unrealistic. A very impressive, brisk eye surgeon named Dr. Chin turned my head this way and that and shone lights into my eyes until I lost my vision and felt one of my eyes break away from tracking up the other and roll around like a marble in the socket. A long series of tests later confirmed that there was indeed a mass inside my eye that had no business belonging there.

 Several years ago, an optometrist had taken a peek inside my peepers and had told me that my eyes were different. A congenital birth defect had left pigment splashed across the iris of my right eye leaving a dark stripe in which there were capillaries that ended in little starbursts. Most people, he explained to me, had one or two. I had over fifty. I had stars in my eyes, he told me. It reminded me of that old Rosemary Clooney song "heeeeeyyyyy youuuu with the stars in your eyes" that my grandparents sang to me. It made me feel special. Now the doctor was telling me that it was perhaps one of these stars that was blooming out of control, causing internal ocular swelling that blurred my vision and caused that creeping black sliver that pulsed in my upper right field of sight like a shadow that disappears when you tried to look at it.  He told me he'd never seen anything like it and dropped the bomb that I would need to travel to see a surgeon who specialized in such things. My heart hit my shiny black boots and felt a little afraid through the pink fog. It wasn't until I had to verbalize the results of our visit to my friends and family that I started to feel it, still there, heavy and dripping on my shoes. The word "tumor" frightened everyone. It frightened me. To us it meant my aunt Mary-Sue, frail and in a wheelchair riddled with lukemia. It meant my Grandma Smith who beat breast cancer only to lose her life to the same disease decades later. Not even the pink fog muffled the sounds those memories made. They told me I needed to go to see Carol Shields of the willis eye hospital in Philadelphia and I thought, ridiculously,

"I'm Luke Skywalker. They're sending me to see Yoda on planet Dagoba, the only one who can truly teach me the ways of the eye tumor force" first and then "jesus christ I hope my x-wing makes it there before this goddamn thing eats my eye".

The next two weeks were equal parts miserable and completely normal. I went about my daily life and tried to sidestep my penchant for the dramatic. I was ludicrously afraid that I would tell everyone I had eye cancer which not only sounded silly but that would invite such a fate to befall me. Or even more ridiculously, that I would tell everyone I had dramatic eye cancer that turned out to be a big eye freckle on genetic crack. So I tried to keep it under wraps. I cried in 120 second bursts, mostly when I talked to Gilson, who sweetly promised me that everything would work out regardless. The little black sliver in my upper right eye grew and soon it was a big black oval, something I could look away from. It followed me just like the anxiety crept up behind my psyche like an old injury that hurts when you turn just so. The tremendously good news that the hospital participated in various programs that would fly us out for free, put us up with a nice jewish couple in the burbs, and send us back home again lifted spirits that would fall right back down when I received the informational brochures that proclaimed optimistically "cancer patients fly free!" across the cover. I talked myself down thinking of the different scans and tests they could've run (and certainly would have run?) to see if I was riddled with similar tumors in traditional cancer prone areas. It was another blow when we realized that without a valid Washington ID Gilson was going to be unable to accompany me. In his stead, my mom came to keep me company and support me and in her wonderful way, she had all of the details of our trip nailed down and in military order within the week. I was grateful that she handled it. The thought of arranging tickets and reservations and rental cars and appointments scared me more than the surgery that they scheduled for the thursday following my exam.

Those two weeks passed with an unbearably slow quickness, arriving just as I felt I couldn't stand the wait any longer but would do anything to postpone the departure. On Saturday night I was a half-step above catatonic at work and took advantage of our big screen TVs to drown myself in repeat episodes of AMCs "vikings" to the tune of 9.15$ an hour. I had felt as though once the trip started I would burst into a million little pieces but discovered that my foggy brain didn't stop my feet from proceeding on in front of the other and in fact, all of the rest of my body parts seemed to be functioning with equal capability, shedding doubt on my need to think as frenetically as I do all of the time to keep me going.  The flights were long and mildly boring, I made it most of the way through two different books but retained fairly little as my brain tripped behind the pages as they turned. Philadelphia, once we arrived, seemed rather unremarkably like other urban city centers with the exception of a very large ornate building that made for a pretty view outside our window. My feet led me to the foot of the bed in our hotel room where I sit right now writing this, half asleep and in some calm alternate dimension that one discovers after traveling through three time zones after springing forward and so thoroughly confusing my body clock that it crashes faster than internet explorer on a PC. Tomorrow I have another barrage of testing and light-shining at the entirely uncivilized hour of 7AM, which is in 4 hours, philly time. 4 hours of sleep or 4 hours until I end this not-knowing; I haven't decided how I want to think of it. As I rub my tired eyes and peer through the blurry edged parallelogram that remains visible beneath the black shadow I still seem high up above it. Sitting on a pink perplexed cloud. Watching someone else's dramatic life unfold chapter after chapter. Until tomorrow-