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 blog full 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.

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.

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.

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.

Scan Storm

Two days after getting my less-than-desirable PET Scan report, we lost power at our home in Connecticut, along with just about everyone in our state. We had no heat, hot water, lights, internet, cable, or electricity. We remained out of power for 7 days. There are still 45,000 customers out of electricity here in Connecticut and I feel greatly for them: the scenario can be quite frustrating. The timing of it all was impeccable because for Craig and me, it actually provided a very welcome distraction from the realities of the news that I got. 

We spent the week in the comfort of neighbors' company with unexpected sleepovers, rotating dinners among all of our houses, lots of laughs and indoor camping. I got good use out of my long underwear and all of our blankets. It was confirmed once again that we have the best friends, neighbors and family. 

Lights out pizza party 

After a long day of doctor meetings at Sloan-Kettering on Friday, Craig and I came home to the beckoning beam of our driveway floodlight and the sound of our neighbor in our basement rewiring the electricity from our generator to our main switchboard. We came in to the heat pumping from our pellet stove and the house whirring with that buzz we all take for granted. It was glorious to be able to sleep upstairs in our bed for the first time in a week, rather than bundled on a couch or air mattress. 

The symbolism of it all was kind of eerie. The plug was pulled out of me for a while there, but there is still light. Yes, there is the dark light of hot spots on my PET Scan, but there is also the promising light that is new experimental drugs and a lymphocyte boost. All of that light came flying at me violently twelve days ago when I first learned the news. My friend Meredith's mother, Julie, generously drove me into Manhattan and killed time while I endured my PET Scan then went to meet with Dr. Sauter to go over the results right afterward. 

He walked into the room and said: "How's your back feeling?" and proceeded to rub the middle of it asking me if it was sore. I knew immediately what that question meant. He informed me that there were some hot spots on vertebrate on my spine, two new lymph nodes lighting up in my right chest, and that the spot on my right hip/sacrum had grown more prominent since my last scan. In short, it looks like the lymphoma is on the rise again despite my new immune system.

Let's Do This Thang

I once again feel very, very good. Last night I actually paused to check if I was still breathing because I was breathing with so much ease. I have no fullness in my chest and no twinge over my heart when I breathe deeply. I've made a full recovery since the cold that sent me down into the depths of fear. My mood and outlook are a million times better, and I am again completely focused on moving forward. Tomorrow will be an important part of that movement: my Day +133 PET Scan – the one we bumped from last week.

I'm pretty psyched up for it rather than psyched out. This has never happened. Of course I still have plenty of anxiety and worry, but I feel as confident as I think is possible going into one of these things. I feel ready: Let's do this thang. Maybe that's why I had a rough patch there. I knew there was something else going on and didn't want to spoil results. I'm now much more ready to handle those results – whichever way they might swing. I feel fantastic by my standards and that's what matters.

Day +119 Recovery Update

Last week’s check-up at Sloan-Kettering was the smoothest that I’ve had yet. A friend’s mother’s best friend, Renee, picked me up from my home and drove me all the way into Manhattan. We hit no traffic on the way in and very minimal on the way home – a rarity. The smooth nearly seven-hour roundtrip commute allowed me the opportunity to get to know this incredibly giving woman who offered up her day and escort services to help out a near stranger. She incorporated a lunch visit with a friend while I took care of medical business.

I completed the drooly, spitty, alienish process that is the monthly Pantamadine breathing treatment to prevent against PCP pneumonia. After I removed the misting pipe from my mouth and was unzipped from my human size plastic bag they lock me in to hold in the medicinal excrement, I was ushered to my next part of the appointment.

Dietary Negotiations

“So now that I’ve essentially reached 100 days, do any of my diet restrictions loosen up?” I asked Dr. Sauter at my Day +98 check-up.

“Now we’ve reached the point when it’s time for negotiating,” replied Dr. Sauter. “What is it that you want to eat?” he asked me playfully.

Oh no. The pressure of this immense decision! I have to pick something that’s worth it and can’t push the requests too much or I’ll lose my bargaining power. Must make this a good one. Out came the first thing on my mind – something that’s been on my mind since getting out of the hospital:

Rebirth and Redesign

Yesterday marked 100 days post allogeneic stem cell transplant, a tremendous milestone. That means that today is Day +101. Today began the next phase of my newly gifted life, courtesy of science and sisterly love.

I am happy. I am thriving. I am becoming comfortable in my new body. I am humbled by how far I've come. I look forward to where I'm going.

This newly designed website and logo represent the opening of the next chapters in my life as I continue to grow and stretch emotionally, physically, spiritually, and professionally. There is much healing to come, but this project has been a testament to what I've accomplished in the summer of 2011. This website development provided a solace and a focus during my first 100 days of recovery.

It has been a pleasure working with the talented artist Joy Nelson, my cousin, communication designer, and newly minted graduate from the prestigious Carnegie Mellon. Her fresh ideas and ability to bring abstract concept to reality with color and artistry was tremendously integral to the logo creation process. I am forever grateful for her patience, talents and devotion to helping me make this happen.

eyes peeled, always is a symbol of journeys that I have endured and of those that I have yet to experience. I will continue to share my adventures and illuminate those of others in hopes to inspire, educate and connect.

Homecoming and Day +95 Update

I took a blogging sabbatical for a bit as I got my head screwed back on. This is not to say that it's completely in place yet, but it's many rotations closer than it had been.

I'm home. I arrived home on Friday night, September 2. I spent the entire summer of 2011 away: June 9-September 2; A summer in The Big Apple. My last days in the city were spent packing with the help of my mom who stayed with me for the last week and put up with my incredible moodiness as my exit day approached. The last day was primarily spent at the Sloan clinic and waiting in the pharmacy for all of my drugs to go home with. I said an official goodbye only to the Hope Lodge programs manager whom I had grown close with and two men on my floor who wished me well as I cleaned out our shared kitchen cabinet. None of my close friends were out on the roof deck when I left, and I think it was better that way. I was extremely sensitive and in an emotional torrent.

Tell The World

After 12 weeks and 1 day of being away, Friday night I am coming home.

A Newcomer to the Treatment Game

It's been an eventful week in Manhattan. We had an earthquake, a hurricane, and I started a new novel therapy drug. I've gotten through it all relatively unscathed, except for the nausea and that unmistakable woozy headed feeling that every drug brings.

I'm now a cancer, three-time transplant, earthquake and two-time hurricane survivor (Dean 2007 on St. Lucia and Irene 2011 on Manhattan.) I don't think I'm going anywhere anytime soon. I've got about what? Three lives left?

Day +67 Scan Update

I got news yesterday that's pretty much just that: news. It's not necessarily bad, not necessarily good, just news. I prepped for that scan and that news on a blanket under a tree in Carl Shurz Park on the Upper East Side. The park is stunning and magical and it was the perfect place for both Craig and me to get our anxiety in check as we awaited my evening scan procedure.

My PET Scan did show a bit of uptake in two places: in my chest near the thymus gland and on the right side of my sacrum bone. These are two spots that have shown metabolic activity in the past and have been likely sites of disease. However, I do not yet have the full radiologist's report detailing what they think is happening this time around. PET Scans are finicky and ultra sensitive. Potential of false positives is high.

Day +66 Update

It's time to make some big moves with my treatment. This has successfully sent me up a wall in anticipation, worry, and confusion. Compounding those mental feelings are their physical counterparts. The past two weeks have been particularly rough for me: body aches, chest fullness, night sweats, back pain and increased fatigue. These feelings are not as foreign as the post-transplant side effects have been. In fact, they are far too familiar for my taste and I desperately hope that the lymph nodes in my neck and the tenderness in my back and hips are just my body repairing from the trauma it's been through.

If it is lymphoma creeping back in, it is not the end of the world, but it will make my recovery world riskier and more difficult. I've talked these symptoms over with my transplant doctor and we've decided that rather than guessing at what might be going on, it makes most sense to do another scan. A second scan is normally done around Day +90 anyway, so we're just bumping it up a bit. This way, we can better know what we are dealing with. Is the enemy again on the attack? Or are these just normal body rumblings surrounding all of the adjustments and growth happening inside of me? My doc wants to see diagnostic evidence and I completely agree with our plan.

Community Living

Most of the time I don’t want to wear a bra. Often I don’t like to wear pants. All of the time I prefer to be barefoot. But none of these indulgences falls under the “acceptable” umbrella at The Lodge.

My neighbors at home probably don’t appreciate it – as sometimes I forget that our house windows see both in and out – but I miss the freedom of eating a bowl of cereal in my undies – call me crazy.

I’m very tired of rules and more tired of other people breaking them. No one wants their first sight of the day to be a grown, barefoot man walking his germy feets on our kitchen floor first thing in the morning. I’ve got to keep my pants on. So should everyone else. Plus, my intestines are still too fragile to swallow that vision.

Why Transplant Patients Have Extreme Precautions

I was getting my sea legs back and felt confident that I could do a little walking out on the streets among the others of my species. Craig had already scoped out a spot that was sparsely populated at 3 in the afternoon, had tables and chairs for us to sit at, and a good amount of people watching opportunities.

We walked the four or so blocks to Foodparc , a cool open area with a massive screen where they show free outdoor movies and such. Beside it is a food court with creative, eclectic, high-end cuisine.

There were open tables to sit at so we chose a high-top – the most comfortable looking of the metal barred options available. It was my first time sitting out in public post-transplant: a defining moment of sorts.

Our perch was the perfect people watching spot. I fashioned a little cushion with my sweatshirt for under my bony, bony bottom and tried not to focus on the sweat swimming between my hands and the blue plastic of my gloves, causing them to stick together like cellophane. It was a sweaty summer day.

I spotted a young guy directly in my line of sight lounging at his own flimsy metal table and chair. He had the tell-tale signs of just getting off work wearing crisp cropped khakis, a pink polo tucked in, but worn with sweat wrinkles along the back from a day in the office chair. The top and bottom were sealed together with a white leather belt. The white Topsiders completed the outfit. Earbuds were in his ears and in his hand a Nutty Buddy ice cream – the frozen treat that comes in a paper cone.

It wasn’t just me that was sweaty. That Nutty Buddy was sweaty too, and there was no way that guy was able to keep up with its perspiration. So he did what any grown man/boy at heart would do, I guess: He licked.

Whatever was playing into his ear buds was hilarious because he’d intermittently toss his head back in the air, mouth wide with a smile, laughing and listening intently, completely in his own world. The oblivion expanded to his Nutty Buddy eating as well.

As fast as the drips would drip, his tongue was there to lick them up. Lick, lick and lick. But I’m not talking about licking just the Nutty Buddy itself. As its cream oozed his mouth followed. There were no napkins involved, just pure tongue. He licked and smacked his lips over every single finger. He stared into space as his tongue traveled to the palm of his hand, licking every last vanilla drip or fudgy remnant up and down the plump pillows of his palm.

I couldn’t believe what I was watching and all I could think about was all the germs that fester on our tongues. Never mind airborne illnesses, this guy was wetting his hand, then the table, then the chair, like it was a postcard stamp. Don’t miss a spot, you don’t want that thing sent back for insufficient postage.

I nudged to Craig who also got in on the action as it got more appalling and intriguing to watch. This man was like a cat grooming itself after a good round with the milk bowl. He was meticulous with every crevice of those paws – yeah, buddy. Mind you, we are at a food court; the options for napkin kiosks and Purell dispensers are plentiful.

He stretched and slid his hands across his table giving it a solid germ transfer – picking up and putting down saliva spread illnesses. At any moment I thought a candid camera crew was going to pop out from behind me: “We gotcha! This is our ‘creep out the immuno-suppressed cancer patient’ episode!” I couldn’t stop staring and I couldn’t stop laughing.

Then no, no, he didn’t … but he did. In his cat-like manner, he guided that agile tongue around the back of his hands. The Nutty Buddy was at its end now. As he licked around the knuckles and in the pockets between fingers he simultaneously folded up the soggy paper packaging that had held his delicious treat.

To my stalking dismay, after one last hand smear across the table he was satisfied with his dessert al fresco and headed out of the courtyard. But not before stopping at the drinking water fountain to rinse his hands off in it.

I watched in horror as one of his saliva soaked hands pushed in the On button and the other rotated under the arched water, periodically hitting the drinking spout. Rotate, rinse and repeat.

Carry a Rock

My Qigong healer told me after session that I need to get grounded. He said that I'm all over the place flitting around above the air disjointed, confused and unfocused. He told me to carry a rock in my pocket as a symbol of connecting with the Earth. After one day, I've already lost my rock ... .