Everything Changes, Nothing Is Lost

A little piece of my heart left me on Sunday. My incredible friend, my inspiration (he’d hate me calling him that, but it’s true), my cancer counterpart, Steve Dickter, passed away on Sunday, enduring complications from his donor stem cell transplant.

Jen, Steve and me at our first in-person encounter. 

I’ve never had such a physical reaction to news. I saw the simple two-sentence e-mail from his wife, Jen, with the subject line “sad news” and I burst into violent, choking heaves of crying. I got so hot and kept pulling off layers – unzipping my jacket, clumsily unraveling my scarf that suddenly began to strangle me.

Craig pulled over the car not having any idea what I was reacting to until I threw the phone at him, he read the message, put his hand on my leg and let me sob it out. He was visibly reeling as well. When I could finally speak, all I could say was that I felt like my heart had broken. My chest was in knots that have yet to untangle.

Steve and I were partners in this cancer journey. We were the ones that were going to make it far past this. He was my constant sounding board, advocate, interpreter, and reality check.

In the crazy, uncomfortable world of cancer treatment where no one knows what to say, he always had the right words. He was very real and honest, witty and ballsy. So smart and so modest. Steve was as authentic as it gets. He was kind, loyal, compassionate, thoughtful and genuine.

He was just a few years older than me. We had the same disease. We had the same attitude toward it: action, defiance, education, at times, acceptance and frustration. We endured all the same drugs. He also had a spouse that loves him tremendously and he the same – a beautiful relationship. We both were in the communications field. We both got riled up about current events. He wrote a fantastic blogfull of clear, funny, sarcastic, insightful and informative writing. We both loved music and lyrics and quotes. Eddie Vedder’s “Rise” was one of our shared motivation songs and he introduced me to Colin Hay. The only thing that separated us was the whole of the United States – he stumbling through this on West Coast time, me on East.

His blog was the first that I found of someone just like me; he seemed like a very cool person that I’d want to be friends with and we just happened to have the same disease. I reached out and he e-mailed right back saying, “Woah, where have you been?” returning the blog compliments I had given him after he read through my posts. I found him in the very beginning, just six months into my treatment. He was ahead of me, so I was able to learn from and follow his lead, his tips on side effects and coping mechanisms, his ups and downs. Then I relapsed first, then he relapsed and followed me, then I, then he. Our paths have been so, so similar.

Our relationship grew and evolved together as we got deeper and deeper into this journey. We rejoiced in each other’s positive news and were defeated when we heard of relapses or infections, always there for each other to lean on. The messages from him and his wife resonated on a different level.

After e-mailing for a couple of years, we met for the first time in person in New York City, and I hung out and talked with him in his friend’s apartment like we’d been best buds since the elementary school playground. When we parted ways after grabbing a bite with Jen, he gave me a huge hug on a city curb and said: “I love you, Karin Diamond.” And I said, “I love you, Steve Dickter” back. It was one of the most real exchanges I have ever had in my life.

We stayed with Steve and Jen in LA the following year and felt as if we’d been in their apartment many times before. Steve and I napped in between the day and evening events, while Jen and Craig sat in the living room and talked caregiver and life talk while we patients rejuvenated.

We went out to dinner where we shared so many laughs – especially about the odd rotating white board listing that evening’s offerings, which would be crossed out by the minute as they were ordered by others – decisions had to be made quick. We laughed a lot about this.

When things got hard, he would tell me that it wasn’t me, that it was the drugs, not us, making us walk around like zombies until our spouses came home to infuse some life into us. He helped me to know not to blame myself and helped to teach me that we can’t let this disease limit us: he was teaching college courses during treatment and pursuing his Master’s degree in communication – writing his thesis while an inpatient in transplant recovery, while also managing several fantasy football leagues, and somehow remembering to check in with me.  

Steve attached this word art to the last e-mail he sent me.

We talked about how our ovaries hurt when we see cute babies, how we hate that we can’t always be there in the way we want to for our spouses, about our futures and all of the beautiful things they held. We would joke about how life doesn’t give a shit that you’re in cancer treatment and it still brings the normal drama of everyday life to manage: flooding basements, unplanned townhouse repairs.  

We talked about how people would tell us we’re inspirations or heroes and how that’s so hard to accept as all we’re doing is what needs to be done. But then, we’d each find ourselves calling each other that. He told me I had Moxie. We said that we were each other’s lights in the tunnel. 

We had a sadistic humor that we could be comfortable and open with, making each other laugh in really horrible situations.

He helped me see straight, he helped me find treatment drugs, he helped me clean up my treatment timeline document so that I could find the doctors I needed. We sure didn’t want this situation, but we both did our fucking best with it, managing our lives with clear focus and determination, but keeping the fun factor alive.  

He always told me that: “This too shall pass.” I suppose it’s a reminder that everything is transient, including the lives of those we hold the most dear. He has passed, but I am forever grateful that he passed through my life. He was one of my greatest gifts.

I am deeply saddened and hurt so badly for his wife Jen, the most devoted wife, friend, caregiver, and cancer researcher I’ve ever come across. She is a beautiful person, and I wish that she didn’t have to deal with this heartache.

It’s going to be very hard to move on in this without him. I have a huge hole in me. I can’t stop reading the posts on his Facebook page and looking at the pictures friends are posting of him from a life before I knew him. All I can do is carry his spirit in my heart and let it guide me through this and defeat this disease for the both of us.

His birthday is my donor stem cell transplant re-birthday, and I’ll forever dedicate June 16 to him. Right now, I’m just in total disbelief and it hurts very badly; I’m grieving very deeply. It’s not supposed to be this way. I miss him and my heart hurts for beautiful Jen.  

He told me that this was one of his favorite mantras: "Omnia mutantur, nihil interit" (Everything changes, nothing is lost.). This change is a tough one for me to swallow, but I know he is not lost because his light will carry on in the love and the lessons he left the countless people whose lives he touched while here with us.

Masked Encounters

Outside a kitschy Little Italy bakery 

For 100 days I could not step into the world without slipping my hands into protective latex blue gloves and strapping a paper mask across my mouth and nose, attached uncomfortably around my ears with unforgiving elastic that would leave deep indentations in my skin.

I got used to children staring, gawking and pointing and to their parents awkwardly fumbling with how to handle the situation. Kids seemed to be the only ones who notice their surroundings. Most others either didn’t even notice me or went out of their way to avoid looking at me for fear that I would vex them or because it made them way too uncomfortable. This was the best part about recovering in Manhattan. There is so much stimulation that my little freak show was just a drop in the melting pot. Had I had to walk around like that in my rural Connecticut town where the most exciting things we see are bears knocking over garbage cans and the annual fire truck parade I imagine my experience would have been different.

Most of the time I just blended in with the crowd. I wasn’t much to look at when compared to the man who dressed in a suit made of old newspapers or the lady walking around with a pet rat on her shoulder doling out flyers touting her savior or the group of teenagers in barely-covering cut-off shorts, inside pockets peeking out paired with tube tops just thick enough to cover their breasts and nothing else.

Washington Square Park

As much as I was afraid of people and looked at them as walking disease carriers, I also wanted to be around people, desperately missing that human interaction. I was alone in a very small room for a month, unable to leave, unable to interact with anyone but the medical professionals, cleaning people and the few family and friends that dared enter my isolation, having to wear their own set of mask and gloves in reverse precaution.

It’s hard to find a place in Manhattan where there aren’t hundreds of others seeking the same grassy knoll as you, people walking on your heels, bouncing off of your elbows and breathing down your neck. My release into the real world was a harsh transition. It’s hard to imagine a more extreme dichotomy than hospital isolation and midtown Manhattan.

Though most often I remained anonymous and attracted no more than stares, there were those few encounters when people couldn’t help but take notice and approach me. I can’t blame them, and though it was exhausting to tell my story and these people encroaching on my personal space sometimes shocked me, I believe their questioning came from a place of concern for my well being rather than sheer nosiness.

  

She Got It

It was very hot and humid outside. The paper mask across my nose and mouth felt especially constricting in the oppressive air. I sat on a hard bench in Central Park just outside the wildlife sanctuary area, not far from the busyness of 5^th Ave near the Apple Store and FAO Schwartz madness. Though it was ill-advised to be in crowds I craved the sanctuary of the park’s trees and hedged my bets to be able to be outside each and every day.

I was uncomfortable everywhere. I was so thin that my bones protruded from my bottom. With no cushioning, the unforgiving wood of park benches made it difficult to sit and rest and forced me to carry a sweater to roll under my sacrum or sit with legs folded underneath me in protection.

Bryant Park

As the hours got closer to lunchtime the park filled with more and more people walking past my bench. Though I sat to the far side, close to the garbage can, no one dared sit next to me on my bench for fear of what disease this masked woman with the latex blue gloves could be carrying.

Under the veil of my rimmed cap, dark sunglasses and mask that covered two-thirds of my face, I watched people in their business suits licking ice cream cones on a break from the office. I watched tourists with large-lensed Nokia cameras snap shots of the bridge made famous in so many movies. I watched mothers and nannies give their children chips and hot dog rolls to throw into the pond and feed the ducks right beside the sign that said: “Don’t feed the wildlife.” I listened to roaming musicians as they set out their instrument cases for money collection and blew on their saxophone or banged their bongo drums.

Most did not notice me at all, blissfully unaware of the newly reborn woman struggling to stay upright in the heat and longing to be as svelte and fast as them, longing to have the occupied expressions they wore on their faces – fingers flying across their Blackberry keyboards or neon Nikes tied up for a run. They had a purpose, a mission, a job, a task. I, on the other hand, was merely doing my best to get through the day using the minimal energy I had for a few hours in the sunshine of a park under the cover of shade, slathers of sunscreen with nothing but my eyes to reveal my emotions to the outside world. Zombie-esque.

I couldn’t show my smile to these people. The mask prevented me from being able to prove I was friendly. I couldn’t engage. I felt alone, ugly, scared, jealous and defeated.

A woman and her husband came around the bend of the park path. She looked to be in her late 50s, relatively athletic, walking with ease and confidence with seemingly nowhere to be but a sure direction nonetheless. She and her husband, a peppered gray-haired man were holding hands as they strolled at a leisurely pace approaching my bench.

Rather than quickly looking away when she saw me — as most everyone else would do — this woman locked eyes with me. She then raised her hand toward me and gave me a thumbs-up. There were no words exchanged, just this universal sign of encouragement. It was obvious she knew exactly why I was wearing that mask and all that it symbolized.

Her opposite hand became outstretched as he gently pulled her back to his pace, oblivious to the interaction that had just happened as she smiled and turned back away from me continuing to admire the pond and the birds and the nature path they walked on ahead.

Fanatic Concern

I was on the corner waiting for a cab. I felt I was always on the corner waiting for a cab. Germ-infested public transportation was not an option for me. I had walked as far uptown as I could stripping down from sweater to long sleeve amid the sundress wearing ladies around me. My body could not regulate its own temperature and without hair and fat I was chilled on the inside, sweaty on the outside most all the time.

It was another very hot and sticky day making it especially hard to breathe behind my constricting facemask and especially hard to stand the feel of sweat building up between the blue latex of my protective gloves and the shriveled prunes that were my fingertips. I wanted to rip and strip them all off – but I couldn’t. They were protecting me from airborne viruses and surface bacteria. They were protecting me from inhaling toxins, cigarette smoke, fumes, construction dust, and allergens.

Taxi cab backseat holding requisite just-in-case barf bag

Without their protection I could inhale a mold spore or pick up the flu virus off a door handle and without the immune system to combat either, they would surely send me to my demise. This was all hard to avoid while living in one of the most densely trafficked sections of one of the highest populated cities in the world: midtown Manhattan, a stone’s through from Penn Station and the Empire State Building and Macy’s – the largest department store in the world. Walking to and from anywhere from my Hope Lodge home was as if entering a bee swarm. 

My friend, Lisa, was with me that day and she was the one sticking her arm out trying to hail a cab to take us the rest of the way to the Sloan-Kettering clinic for my appointment. I hovered to the side under the shade of a bodega awning so as to not scare off the cab drivers and to get a much-needed break from the oppressive sun, which was adding to the wooziness I already felt from low blood counts and high medication doses.

The store owner burst out of the door and ran over to me as if he – or maybe I, unknowingly – was on fire. He was tall and olive skinned wearing a white apron striped with meat blood and sauce stains. His eyes and hair were dark, wild and untamed.

“What happened to you?” He nearly shouted at me in aggressive concern. “What happened to you that you have to wear that mask?”

I jumped back startled by his forwardness. He looked at me with an expression of deep worry and sadness. His eyes softened and were welled with tears of empathy as he saw how young and fragile I was and his curiosity about my condition couldn’t be sated.

I explained that I was a cancer patient, that I had undergone a procedure to replace my entire immune system, that my body couldn’t fight infections so the mask had to be worn to protect myself.

I don’t know that my answer satisfied him. He was very angry and he wanted me out of the mask. He did not want to think of me suffering.

“Are you okay? But why … ?” He implored further.  

I had to cut him off as I heard Lisa call to me and saw a yellow taxi pulled over for us. I walked away from him as he mumbled generic phrases like “May God be with you” and “I will pray for you.”

My hidden facial features perfectly expressed my numbness.

Lisa asked what the ordeal was all about. I just shrugged and sank into the cool leather of the air-conditioned cab, careful to avoid the sticky remnants on the armrest from the last rider’s iced coffee spill.

An Unexpected Walking Partner

It was a warm, summer evening. The rush of commuters had subsided and the sidewalks were again passable. I needed to be alone and begged and pleaded with Craig that I was stable enough to do so. After much argument and promises that I wouldn’t collapse, he finally decided to let me go for a walk on my own.

44-foot tall "Echo" sculpture by Spanish 

artist Jaume Plensa in Madison Square Park

I headed down 7^th Avenue toward the Flatiron District with no particular destination in mind except to move away from the shopping crowds of mid-town and Times Square. I enjoyed cutting down to Madison Avenue where the sidewalks were wider and tree-lined and I loved the days when I had enough strength to make it to Madison Square Park to marvel at the tranquil piece of public art at its center.

But tonight was one of my first outings alone with no one there to hold my arm if I got weak, so I decided to cut it short and began to take the turn to cut back to 6^th and head “home.”

Suddenly I felt someone creeping up at my heels. I gripped my sling back backpack tighter and picked up the pace a bit, assured that my cell phone rested in my front pocket but realizing my vulnerability as an obvious weak target for an aggressor. I hadn’t considered that at all. I was never scared walking the streets of New York.

I felt his breathing then a few steps later he was at my side.

“I used to be like you,” he said to me as he got into my space.  

I turned to my left and found a man in his forties with some facial stubble and a tan. He was wearing Merrell sandals and a button up short sleeve with khaki cargo shorts. He seemed harmless. A heavy New York accent told me he was a native.

“Where’d you get treated? At Sloan? Me too. I remember having to wear those same damn mask and gloves,” he told me.

We synced into step and once I got my bearings and understood that this was not a rapist or a pickpocket but instead a fellow transplant cam padre I let my guard down and was relieved at the circumstance and overjoyed to be able to walk and talk with someone who’d been where I was now.

He looked so well and healthy and strong. He was more than 10 years out from his transplant and assured me that I’d get there, too.

Home base

We walked together for several blocks as the sun set behind the skyscrapers and gave the sky a purple haze. He told me about his inpatient experiences, and we compared horror stories about symptoms and frustrations. He shared with me what it’s like to be on the other side. We were instant companions sharing an unfathomable common experience.

He was heading uptown for his real home, while I had to turn back downtown toward Hope Lodge where I lived among the cancer patients. He put his hand on my shoulder in a sign of reassurance and encouragement. I thanked him for stopping me on the sidewalk and opening his life to me.

We parted ways and once I got back to Craig and the Lodge I crawled onto the bed flipping to my back and putting my legs up the wall to drain all of the swelling. My muscles were tired and my joints achy from the walk, but my heart was filled by the prospect this stranger instilled that one day this pain would be over and I would be on the other side, too.

I suppose I didn’t need to be alone that night. I needed to find a stranger who had also lived behind a mask and just happened to be walking the same route as me.

The Guru in the Elevator

It was this time a year ago. I was in the thick of allo transplant recovery, meaning I was tired, uncomfortable, irritable, frustrated, nauseous and in pain – a regular emotional biatch.

This particular morning I was particularly tired, swollen, hot and weak and was not at all eager to make the trek from Hope Lodge in midtown to Sloan-Kettering on the Upper East Side for a 9 a.m. clinic appointment. At that point the clinic appointments were essentially daily, and it was getting old and exhausting.

Every couple has their sticking point and ours for the summer of 2011 was cab hailing. A certain woman begged every night to call ahead to schedule a cab for door-to-door service. It would be a bit more expensive, but would save a whole lot of headache. A certain man with his certain manly stubbornness was confident that every morning getting a cab would be a breeze. He wanted to walk a block to the commuter epicenter of Herald Square and stick his hand out amid the chaos.

We woke and got dressed. Though it was already 80 degrees and humid at 8 a.m., as usual I was wrapped in jeans and a sweater trying to combat my lack of warming red blood cells, hair and body fat. I was a chilled waif.

The tension was already starting to seethe between us as I absently ate my toasted waffle with a side of six pills and a gagging spoonful of chalky anti-fungal rinse to wash it down.

I covered my face and nose with my requisite yellow mask and snapped my fingers into my germ protective blue latex-free plastic gloves – the picture of fashion. Shuffling on my stick-thin legs Craig and I made our way out of the Hope Lodge building and up 32^nd street to Broadway, eyes peeled for an open yellow cab.

Finding an open yellow cab at 8 a.m. on a weekday right at the hub where the Long Island Railroad, New Jersey Transit, and a slew of subway stops dump is like finding sea glass in desert sand. It’s a fierce competition among people stepping into the street with fingers extended into the air, legs poised in a stance of arrogance and urgency. The available cabs are few and far between, most already occupied, and getting one to stop for someone who looks like they’re carrying a communicable disease makes the challenge damn near impossible.

I was quickly losing patience and energy was fading. Craig stood there tirelessly on the corner with his arm out as cab after cab whizzed by or as others cut right in front of us just 10 feet ahead and weaseled their asses into a ride.

“This isn’t going to work,” I said. Time was ticking and we were losing our traffic buffer that would get us to my appointment on time. I loathed being late. The later I got to clinic, the later I got out. 

“We should have called ahead for a cab, ” I rubbed in to add salt to the already pulsing wound. “I told you we should have called last night. We’re never going to get a fucking cab here.”

Craig stood stoically, arm outstretched and unwavering as I danced around him like a nagging bumblebee. He wouldn’t even acknowledge me. My angst and frustration were getting to dangerous levels.

10 minutes passed.

5 more minutes passed.

No cab possibilities.

“We should just start walking,” I yelled through my mask, which muffled the severity of my tone. “This is the worst place to get a cab. It’s never going to happen.”

Craig quipped back at me telling me to be patient and that we had plenty of time.

Patient? I thought. Things didn’t have to be this difficult if somebody wasn’t so stubborn and we could have just planned ahead.

“Why wouldn’t you just call the cab company like I asked?” I yelled as I started to roll into temper tantrum mode right there amid the suited businesspeople all around us. The question was rhetorical at this point. I was just feeding fuel to a fiery situation.

Five more minutes passed with no signs of a ride. The frustration was escalating. I was hot and then cold and then nauseous and then woozy. I was still getting transfusions of nutrients at this point, functioning (barely) with scant potassium and magnesium, never mind a body wrecked by chemo and not enough blood cells to sneeze at. I hadn’t taken a normal shit in days and was unstable and getting angry.

“I’m going to the Penn Station cab line,” I announced to Craig. Penn Station was a long avenue block from where we were standing, but I knew that there were guaranteed cabs there. There would also be a guaranteed line of people waiting to get into those cabs, but at least it was a sure bet.

“That’s ridiculous, Karin,” Craig said, his voice now escalating. “Just wait.”

My mind was made up. Now my stubbornness had set in.

“I don’t know what the F you’re doing, but I’m going to get a cab to get to my appointment,” I bomb dropped and started on my way. Ooooh, this is a good way to get him back, I thought evilly, because obviously the whole New York City cab inefficiency problem was Craig’s fault.

Now it was a competition of who was going to get in a cab first. I didn’t give a damn if we took separate cabs up Manhattan: that would make my original idea of door-to-door service be the much more economical choice.

I was on my way, weaving through the throngs of people pouring out of Penn Station going against the grain at a real fast clip. I had only recently found my legs again and hadn’t walked much more than the minimal steps required to get through the day. But that morning I got my sprint back, spurred solely by determination to prove a point.

My sunglasses were steaming from the forced air coming up through my mask as I choked on its staleness and my hands began to moisten with sweat and itch within their plastic encasements. I pushed on, fast walking my bony little ass to the corner opposite the cab line – which was about 30 people deep – when my cell phone rang.

“What?!” I angrily breathed into the phone at Craig.

“Where are you?” he asked. “I have a cab. You need to get here.”

I could hear the cab driver in the background yelling at Craig to get in amid the honks and hollers of drivers trying to get around him.

“I’m already at Penn Station,” I quipped, which wasn’t entirely true.

He couldn’t believe that I had made it that far that fast. I turned around to head back to him and the cab he had snagged, but of course didn’t tell him that. I thought it would be more emotionally effective to hang up on him.

I shuffled up the street dodging people with rolling suitcases and men hocking over their tables of framed Justin Bieber photo prints, bootleg movies, peace pipes, chinsy phone cases and plastic Empire State Building replicas.

It only took a few yards before I started seeing stars and thought I might damn pass out in a puddle of street piss. My cell phone rang again, echoing violently through my throbbing head.

“What?!” I quipped again. I knew damn well what.

“Where the hell are you? I can’t hold this cab for long; the guy is screaming at me,” Craig pleaded.

“I’m coming!” I spat into the phone, this time keeping our connection open so that he could hear my labored breathing as I lumbered the rest of the way up the block – good dramatic effect.

The cab driver was off his rocker in anger, yelling: “Get out of my car! This is not your cab to hold!”

Craig was holding the back seat door open, totally manipulating the situation. I heard him pleading with the driver saying that I was just a few yards away, that I’d be right there.

Other cabs were driving by slapping their hands on “our” cab yelling in anger at this driver who was holding up traffic in a no-stopping zone. But Craig held strong and didn’t let go of that door.

I could see him in the distance in steamy chaos and I started to feel a little bit bad for taking off – just a little bit though. Even so, hell no was I going to admit it then.

I rolled into the back seat somersault style and the cab driver sped off with us plastered by momentum to the back headrests, yelling incessantly. It was probably a dangerous choice to get behind the wheel with him, but we were finally on our way still with the potential to make it on time if the 5^th Avenue traffic cooperated.

Not a word was spoken between Craig and me but a whole lot was said. We were each seething and leaning against our respective windows to get the absolute greatest distance between us possible. I really didn’t feel well but admit that I amped up my labored breathing and moaning for further dramatic effect, grumbling frustrations and ‘told-you-sos’ under my breath just barely loud enough for Craig to hear.

He said nothing, but his eyebrows were so furrowed their centers were touching and his back was as rigid as a plank, neck arteries pulsing.

The cab driver let us out at the hospital entrance and peeled away leaving us in a cloud of city smog.

Craig walked about 10 feet ahead of me. It was as if we were to be too close we would each implode in anger. I labored behind, super slow for effect, so that he would have to hold the elevator door open for me.

A man stepped in the elevator car with us for the ride to the fourth floor. He was in his mid-fifties, easy, breezy and relaxed looking. I wanted to bite and hiss at him.

He looked at me in my mask and gloves and said: “I used to be like you,” and proceeded to tell me that he was a transplant patient 15 years ago.

Last year's anniversary on a rickshaw ride
through Central Park and Times Square.

La dee fucking dah, I thought to myself and gave him a half sneer, which he couldn’t see through my facemask anyway.

He looked at Craig and said: “You want to smack her yet?”

What? Who is this guy?I thought totally shocked at his remark.

The elevator door opened on the clinic floor and the three of us stood in the vestibule.

“A year from now she needs to take you on a vacation for having to put up with all her crap,” the man said to Craig.

I stood there like a doofus knowing full well that this man remembered the many days on his own drug-fueled post-transplant emotional crazy train and could tell I was conducting my own engine that day.

“Do you know what happened today?” Craig asked, breaking into a smile.

“Yes; yes I do,” the man replied and walked away down the clinic corridor.

It broke the spell and we both took our guards down and actually looked each other in the eye and smiled – kind of.

A year later we’re taking that vacation, celebrating our 5-year anniversary today on our way to Bar Harbor, Maine, with Sam Dog in the back of the Jeep, for a week of playing at Acadia National Park – the land of no cabs, no traffic and no stress, but rather lobsters, ocean, trails and sunrises.

For all the crap I gave him last year, Craig never did smack me. I guess that man in the elevator was right. He damn well deserves this vacation – and then some.   

Like Spokes In A Wheel

I always harp on the point that I don’t want to give the cancer credit for anything. If cancer is a gift, I don’t know who is dolling that out, but he or she or it needs to rethink their choice of presents. A gift is something that you give to someone to brighten their day. I wouldn’t give this to anyone; no one deserves it. It’d be nice if my cancer came with a gift receipt because I’d take that shit back. I’d even settle for a store credit.

However, it can’t be denied that the circumstances living with cancer has dealt me have opened up many worlds – the biggest reward being the people that it has brought into my life. Craig and I spent the weekend on Cape Cod with one of those incredibly special people, our friend Lulu, the mother of my transplant cam padre, Matt (who turned 50 this year and was declared cancer-free from his Non-Hodgkin Lymphoma, his transplant from an unrelated donor a great success after a tough road!).

Matt and me sporting our floppy hats that Lulu gave us. 

We rocked them with the tags on trying to start a new trend. 

Lulu was his primary caregiver at Hope Lodge last summer and the four of us spent many hours together sleeping, reading, chatting and (believe it or not) doing lots of laughing on the roof deck of The Lodge. They were both tremendously integral to my survival while living there and rebuilding.

Matt has been my rock, sounding board, bitching partner, and inspiration. We call each other jamokes and laugh at the absurdity of circumstances together like when I fell on my ass and broke my foot and he fell off his bike and broke his shoulder. His mom Lulu is one of the most interesting people we know and has brought so much positive perspective and life lessons. She’s been so helpful to Craig and to my mother, with whom she’s also forged a close relationship, as they all navigate how to deal with us crazy transplant patients and all of our baggage.

A fantastic Cape Cod weekend with Lulu. 

To be able to spend time together at her beloved cottage, in the ocean and on the sand that we all pined for last summer from the hot city concrete was a little bit surreal and a whole lot beautiful. We talked about how going through the adversity that we have can carry so many positives with it and how grateful we are were that our circumstances brought us into each other’s lives, no matter how crappy those circumstances were.

I am so fortunate to have many relationships like this, people in my life that I never would have known had it not been for our cancer journeys intersecting. These relationships are so important to me, built upon a deep love and appreciation. To be able to tap the support of these friends that can relate on a whole different level is invaluable. I truly believe that people are brought together for a greater reason and that the connectedness between humans is a bond stronger than anything.

However, it doesn’t mean that just because people share a disease that the commonality makes them instant friends. I’ve also run into people that I have not aligned with at all and whose energy was not something I needed in my realm. Those that I’ve grown close with are kindred spirits that I thrive with. This would have happened with or without the whole cancer thing – that just happened to be the catalyst that brought us together. We have way more in common than that.

Steve, Jen and me - our first time meeting 

outside the 

virtual world. 

Our friends Steve and Jen are two of the coolest, smartest, chillest, determined, kind, openhearted people I’ve ever had the honor of knowing. He is recovering from his donor transplant right now, far from home and grappling with some difficult Graft vs. Host Disease manifestations. I think of them both multiple times a day every single day. We’ve spent time together in LA and NYC and have shared so many intimate conversations over e-mail and texts, conversations that I often look back at to make me laugh or help me cope.

I love swapping stories with my buddy Ethan, checking in with Tiff and Bekah. We can talk to each other without filters. Our connections are immediately from heart to heart without all of the bullshit in between. We can be real and open and comfortable, a level of intimacy that’s refreshing and easy.

In The Book of Awakenings by Mark Nepo, one passage compares humans to spokes on a wheel.  “What we reach for may be different, but what makes us reach is the same,” it reads. Each spoke is essential to keeping the wheel whole, but no two spokes are the same. Every spoke offers some different type of energy to draw from. 

I’m so incredibly fortunate to have such strong spokes spinning in my wheel, propelling me forward.

ReBirth Day 2012

June babies blowing out the candles to mark our dirty 30.

I turned one year old this past Saturday, June 16. One year old about three or four times over now? I feel so mature in my old age having survived one year post donor stem cell transplant, never mind my two autologous transplants in 2010. In the eloquently raunchy lyrics of Eminem’s “Cinderella Man” – a line that’s been stuck in my head for months now: “By the skin on my teeth and the hair on my nuts I skated by.” So true, Marshall, so true. Thank the universe for that figurative teeth skin and nut hair because sometimes I felt that was all I could hold onto.

The whole week leading up to the anniversary of my Day Zero – the day my sister’s stem cells were sent into my blood stream – was very emotionally draining. I didn’t expect to have such a hard time with the approaching day, but in reality I lost much sleep over it. I had restless nightmares with flashbacks of last year at this time when my mouth was so full of open sores from the chemo that it was pooled with blood for days, smears of red coating my teeth. I’d bolt up in bed with my heart pounding remembering waking up from the anesthesia too early and hearing the rush around me as interventional radiologists worked to jam a new catheter down a vein in my chest yelling for pressure and a transfer table as a bag of my mother’s donated platelets dripped into me in an attempt to clot my blood.

To say I went through some trauma would be to put it mildly. Unfortunately, those memories still haunt me, and I don’t know that I’ll ever process it all. Fortunately, I have so many positive memories of this past year that most of the time they overshadow the scary parts. It was those memories and the immense amount of gratitude and disbelief I feel that I gave attention to on my first re-birthday.

Craig and I hosted a huge shindig at our home to celebrate this re-birth and both of our 30^th birthdays which happen this month. There were more than 100 of the most special people in our lives here to celebrate with us. We had an Extreme Octagon inflatable complete with adult jousting and boxing matches, a taco truck dishing out fresh creations, and a live band – Organized Chaos – consisting of an incredible group of guys from T’Ville and the surrounding area who rocked the lawn. We also took up a collection for the American Cancer Society’s Hope Lodge NYC, which was home to us all last summer and also this spring when I was in the city for radiation. Everyone’s generous gifts of needed living supplies for the facility filled a HUGE patio furniture sized box of goods that we can’t wait to deliver.

It was an incredible and beautiful evening after a rough afternoon spent talking myself out of crying and pushing myself to enjoy and relish in my accomplishments rather than dwell on the difficult memories of the past. It’s over. I’m past it. Maybe the cancer isn’t completely gone, but I’m fucking here and alive and feeling good and that’s pretty damn cool. Once the party started there was no way to dwell on all of the bad when surrounded by so many fun, positive, smiling people that have been there for us throughout our lives and especially throughout the most difficult times. I don’t know how we got to be so fortunate, but I’m so humbled by the people in our lives.

This past year has been a year of rebuilding. There is the obvious evidence of that: my formerly bald head is now covered in nearly three inches of baby fine curls and I’ve gained back 15 pounds of mostly muscle (I like to think!) filling in the scary bony look I sported last summer and bringing me back to a comfortable weight for my frame. I got to standing on a surfboard and I’ve been active and feeling healthy. I suffered with a bout of bronchitis over the past two weeks, but now I feel fine and my cough is completely gone – just like a normal person. I’d say that’s a pretty tangible sign that my new immune system is alive and well. We’ve just got to get that baby trained to go after those invading lymphoma cells. I have confidence that it will.

But more important than the physical aspects is how far I’ve come mentally and emotionally. I’ve experienced so much growth over this past year. I suppose coming that close to death kind of forces you to become very intimate with your self and very aware of the loved ones that surround you and the brevity and unpredictability of life. My close relationships are deeper than they have ever been as I find myself opening more and wanting desperately to give back the love that I was showered with during my most difficult times. Challenges seem less daunting and fear is no longer an issue. I’m more accepting of where I am at in life and more appreciative than I’ve ever been of my body and its incredible resilience. I firmly know who I am, what I stand for, what I’ll tolerate, how I want to spend my time, what I need and what I don’t need in my life. These realizations and self-awareness are absolute gifts.

I don’t pretend to have it all figured out. I never want to have it all figured out because if I did, what a boring life that would be. Every day I strive to discover, explore, challenge, learn, digest, and mostly just take it in and “be.” I’m fully aware that on paper, I’m not really supposed to be here, but I still am, and I’ll never lose sight of that and the responsibility and humility that simple fact carries along with it.    

Putting my game face on in the Extreme Octagon. 

Tacos for everyone! Showing a little bit of Texas love in honor of our time in Houston. 

We are Lucky Tacos fo' sho'.

Sammy came over to receive the "Happy Birthday" song with us. 

Our peeps.

Warning: Explicit Lyrics. Sometimes expletives are the only way to describe the craziness of life, and this song has been a bit of an anthem for me. When I want to get all pumped up it does the trick and is incredibly appropriate right about now.  

Tête-à-Tête-à-Tête

My Sloan-Kettering peeps: Dr. Sauter's nurse, Heather,
Dr. Moskowitz, me, and Dr. Sauter - the dream team. 

I have been home and feverless since last Thursday when I was discharged from the hospital. We figured out what the cause wasn’t, but not really what the cause was. But I’m feeling better and that’s all that really matters. I was ballooned up with almost three days worth of heavy-duty IV antibiotics, IV steroids and lots of IV fluid in hopes of flushing any kind of infection out. No bacteria grew in my blood cultures. My chest and lungs are clear. There is nothing out of the ordinary in my blood work, except for that incredibly high sed rate, indicating high volumes of inflammation in my body.

I got the sign off by the medical, oncology and infectious disease teams that were overseeing my inpatient care and was sent home with instructions to call if chills and fevers again broke in. Despite trying to get out of my previously scheduled appointment, my doctors at Sloan really wanted to see me in New York City on Friday. I was desperately tired on Thursday after finally getting home and couldn’t even fathom a trip to the city, but they assured me that they could see me at whatever time I could get there. They are ultimately the ones who I’ll be working with to decide my next steps – and the ones who watch me so closely and frequently, so I knew that in the end it’d be worth the trek for them to inspect me and weigh in on what might be happening.

My parents took the day off of work and my dad drove us into the city so that I could catch up on all the lost sleep coming off of my hospital stay. I didn’t really sleep, though. I was more cranky and delusional, kind of like when I used to ride in the back seat as a toddler I imagine. We sat in a lot of traffic, which only made me angrier. But we got there, as we always do. I was too impatient to wait to park the car so jumped out on York Ave and made my way into the hospital and up to the physician suites grumbling.

The driving force behind me going down there was that it was set up as a dream appointment. My lymphoma doc, Alison Moskowitz, was on service in the main hospital and my transplant doc, Craig Sauter, had clinic there so she wanted to be paged when I arrived and they’d see me together – a collision of my medical worlds! For two years I’ve wanted to get them both in the same room to talk about me, with me, and it finally was going to happen. Sure, my voice was so weak and strained I could barely talk, but this was going to happen.

When they both walked in the room together I got all red-faced and smiley and we were all laughing as I kept remarking how surreal it was to have my whole team together. They work in offices next to each other and have taken a team approach with me all the along, but I’ve never seen them interact and they’ve never seen the other doctor interact with me. It was kind of like they were competing with who I’m closest with because we are all kind of besties, not too far off in age and completely relatable to each other. The thought of us all hanging out together effectively melted away my anger and I was back in survivor mode armed with my list of questions about my status as a lymphoma patient, transplant patient, and human being. I felt like focus was lost over this past month and I wanted to get back on track. This was the perfect opportunity to do so: a meeting of the minds, a regular tête-à-tête-à-tête.

My mom took notes while the three of us talked about the potential that still remains with my donor transplant immunotherapy process and the myriad drug options still out there to try against the lymphoma.  We talked about some of my hypotheses and concerns, as well as theirs. We were three amigos putting our brains together to hash this all out. I asked the tough questions about my future in all of this and was told that there is still much potential for cure. I guess I’m not going anywhere anytime soon. They told me that I’m the kind of patient that they love because I’m out there and doing things and making them look good despite all that I’ve gone through. They want to keep it that way and so do I. I’ve reiterated my need for quality of life many times as being active and engaged in my life is very important for me. If a treatment takes that away from me then it may not be worth it to me in the long run at this point.

They hear me, always, and take so much time with me. Dr. Moskowitz wasn’t even seeing patients but made this special visit for me, and Sauter opened up his clinic for her to work in, his “hood” as he referred to it. I truly have the best medical care out there: not just the science and the medicine, but how I am treated and respected as a patient and a person. It makes a tremendous amount of difference to know that my doctors at Hartford Hospital and at Sloan-Kettering care for me as much as I care for myself, that they get me, my goals, my outlook and my level of intelligence and toughness.   

As a result of this power meeting it was decided to pull me off the CEPP chemotherapy. I didn’t even have to use all of my arguments against it, Dr. Moskowitz was already planning to pull that plan as she knew that I just didn’t tolerate those drugs well.

I will have a PET Scan done this Thursday and will see her to look over the results on Friday. I have not had a scan since the end of March, so it will be interesting to see what it shows. With the fevers, night sweats, and elevated sed rate, it’s not unlikely that the lymphoma is flaring some. However, there is a chance that all of this inflammation was just my immune system/the CEPP chemo working and the scan could be completely clear. In a few days we’ll have a clearer picture – as clear as the muddy, often unreliable results of a PET Scan can be.

If my scan is looking better than the last and we don’t see any disease spread then we’ll probably do nothing and ride things out until the GVH in my mouth calms down and we can look toward getting some more of my sister’s lymphocytes through a DLI procedure. If my scan looks worse then I am scheduled to start up another regimen of SGN-35 (now FDA approved under the brand name Adcetris). This is the highly targeted drug showing very positive results against refractory Hodgkin Lymphoma that I was on in December 2010 through compassionate use before it was approved. It’s now very sexy in the HL world. Both Sauter and Moskowitz believe that though I did have growth while on the drug after 3 rounds prior to transplant, it may work differently now that I have an entire new immune system. The microenvironment in my body has changed and for all we know the nature of the lymphoma has changed as well. These flaring areas may be more sensitive to the targeted attacks the drug makes to CD-30 cells present in Hodgkin Lymphoma. It’s all about the proteins and the disease strands and the micro- and macro-environment in there.

What’s great about SGN-35 is that I experienced virtually no side effects with it. Because it is so highly targeted to the CD-30 cells, it does not negatively affect all of the other fast-growing cells in my body, keeping the rest of me as unscathed as is possible. I did have some allergic respiratory reactions at the end of my last two infusions on the first go-around, but we are going to pre-medicate for that. There is some worry about neuropathy, much of which I’ve read about with other patients’ experiences, but I’m told that if I do get it, it comes on slowly and is most often reversible.

The drug is given by infusion over about 30 minutes once every three weeks. Other than that, I don’t have to worry about devoting any time to it. I can just live my life. I’m very comfortable with this plan if it’s what the PET Scan dictates needs to happen at this point. As an added bonus, Sauter tells me that SGN-35 is now being explored as a way to reduce Graft vs. Host Disease in transplant patients so it could be the perfect combo of lymphoma-kicking and GVHD-avoiding powers that will lead me safely into a Donor Lymphocyte Infusion that will be my forever cure. Here’s to hoping … . 

Vials of Love

Below is the text of a piece that I had the honor of sharing last night as part of "Syllable: A Reading Series" at La Paloma Sabanera coffee house in Hartford, Conn. Reading such a personal piece – out loud – to an audience of fellow writers and lovers of literature was both terrifying and comforting. I thoroughly enjoyed listening to the varied works of the nine other writers who put together poems, song lyrics, fiction, and nonfiction – all set to the theme of love. What a wonderfully talented group of people and a fantastic platform for writers. I was so happy to have been given the opportunity to take part. 

"Vials of Love"

I love a woman whose name I don’t remember. In my musings about her, I call her Ona or Aziza or Albutus – names that are strong, gutsy and exotically Eastern European.

I love this nameless woman something fierce. It’s not a love driven from deep in the loins. There is no primal sexual attraction. Though she is old enough to be my mother, the love I hold for her is not of daughterly admiration, nor is it a love of friendship or convenience. It’s an uncomplicated, organic love from one human being to another. It’s a love of deep appreciation and gratitude for the compassion and respect she displayed in a situation where sterility, ache and isolation ruled supreme.

Even if my love is unrequited, the compassion she displayed toward me was humbling and unforgettable. I’m sure she’s moved on to spread her love to the next hundreds of stem cell transplant patients, each enduring the intense recovery that follows replacement of their entire immune system. No doubt she is there holding hands, petting bald heads, arranging someone else’s stuffed animals against their thin hospital pillows to greet them when they get out of the shower. But it’s okay; I’m willing to share her.

She probably loves me like she loves any of the other cancer patients that she cares for. A love of compassionate obligation? Or was it something more? If it was just “doing her job,” then that woman far surpasses all stated requirements of a “Patient Care Technician.”

Even though a protective mask always covered her mouth, I didn’t need to see her lips to know she was forever smiling. She wore far too much floral perfume and the nurses lovingly remarked that her breakfast of early morning meat chunks at the nursing station would make them all gag. She told me it kept her strong. Her eyebrows were drawn on following a curve that was too drastic in a color that was too orange.

Her words always bubbled over like a pot of water left to boil too long. Her body had the mountains and valleys glorified in Renaissance paintings of nudes. Shiny and polished, her porcelain face was dominated by cheeks rounded out as if in permanent trumpet blowing position. The plump flesh of her stockinged feet seemed to pour over the sides of her thin-walled nursing shoes. She was thick and strong and radiant.

I love remembering this Ona/Aziza/Albutus like I love burying my face in a warm towel right out of the dryer. I love her like I love the whirr of our garage door opening each evening, signaling the arrival of my husband. I love her like I love the feel of our dog’s determined snout snuggling its way in to rest on my lap. If it’s something that brings me comfort, it circles back to her – her voice, her authoritative, but encouraging touch, the bedside talks we had, her reminders to me of the simple fact that I was okay, I was beautiful, and I was loved.

I wrote very few words during my 28 days as a quarantined hospital inpatient on the transplant floor at Sloan Kettering Cancer Center. But there was one note I typed on my phone on July 1 at 2:06 pm, four days before my hospital release. It was a quote from my beloved care tech that I’ve held in my heart ever since.

Every day when she came into my room, she’d glance at the chart on the wall that tracked my blood count numbers. They were finally improving and she rejoiced, dramatically:

“Beautiful numbers for a beautiful girl! Just perfect! Just great! Everybody loves you!” She said it like a bird cooing at me, infusing great joy. Her comment resonated so much that apparentely it drove me to type it out – never wanting to forget it. 

Her comment came at a time when I felt so ugly and so imperfect. I remember it so vividly I can hear the strong accent of her voice perfectly clear in my head.

Her voice was sing-songy and rolled like a lion’s purr at the back of her throat in a way that both soothed and infused energy. She brought in a beam of sunshine, an ethereal presence amid the constant barrage of the cold metal stethoscopes and the stark antiseptic white of doctor’s lab coats.

“Go shower; You feel good,” she’d push. “I make your bed while you get dressed. Look, I lay out your towels, soap, wash cloth.” She’d open the door to the nondescript bathroom as if it were a palace of marbled floors and brass fixtures. It was far from it.

She was really there because patients like me were not allowed to shower without someone in the room for fear that we would fall from being so weak and woozy. Every morning just as the sun was rising she’d come in to get me going.

“You ready beautiful girl?” she’d ask as she burst in the room donning the requisite mask and gloves, interrupting my quarantine daze with the cheerfulness of a three-ring circus. It was like being greeted by a life-sized colorful Russian stacking doll.

If I groaned that I wasn’t ready for a shower yet, she’d give me more time.

“It’s okay; I be back,” she’d coo. And, she always came back. In a place where there was so much unknown, she was my constant. Her job was to get me up and out of bed and ready for the doctors to come in on their rounds. She ensured that I showered, cleaned, dressed, and moved out of the dreaded bed to sit on the chair in the beams of sun that came through the window.

I remember nothing of the details of what we spoke about, but I do remember how our morning conversations made me feel. She made me feel like a princess to be pampered. She’d wash the overnight spattering of my vomit off the toilet seat back while humming the polka in her deep guttural tone.

She’d clean from the shower the heaps of curly black hair that had tumbled from my head when the chemo got to successfully destroying all of my follicles. It fell to the tiled floor in chunks as I shampooed. It’d swirl around the industrial shower drain, sticking on its way down to the cheap, plastic excuse for a shower curtain and the sliver of antibacterial Dial soap I had to wash with. 

I’d groggily apologize and she’d brush me away with a soothing and musical: “Don’t worry. Relax, sweet girl.” 

She was a bottle of effervescence who complemented the infusions of chemotherapy, steroids, fluids, vitamins, blood, pain meds, and antihistamines.  She injected me right along with the shots given by the parade of kind nurses, but her vial was filled with love in the liquid form.

Those infusions were the daily boosters I needed to push past the sadness and lean toward the light. What is love but rejoicing in the sight of a face and the sound of a voice that is the first that you see in the morning? It was hers that woke me and calmed me on 28 mornings when I could barely see or hear anything else at all.

Compassionate love can transcend a mind and body blurred by heavy narcotics and fear. Love can carry the hope that is vital to making it to the other side alive. That love can come in the most unexpected of packages. Mine just happened to be in the form of a Russian cherub who ate marbled meat for breakfast and tucked the tightest hospital sheet corners I’ve ever seen.