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 ... .

The Breakup

Sounds strange, but good news can be difficult to take. In a way, I feel a loss. Having aggressive refractory disease will do that to you. Whenever good news is delivered about clear scans or positive movements forward, I find myself receiving it with a skeptic’s embrace. I’m thrilled to no end about the condition I’m in right now, but it’s hard to quench the worry that it isn’t a permanent condition. The many, many, many times the disease has begun to retreat only to figure out its attacker and come back within just a few weeks has left me with scars of hesitancy that I don’t know will ever heal. I’m like a timid dog just let out of my very small cage after years of abuse. I need to retrain myself to trust and accept that this battle may actually be fizzling – a slow burn-off, but fizzling into health nonetheless.

I was so naive in December of 2009 when after six months of ABVD treatment against the Hodgkin Lymphoma, Craig and I threw a “Kicked Cancer’s Ass” party. There was no reason to think that I hadn’t. My November PET Scans showed a full response – and a vast majority of Hodgkin patients are done at that point. In January when a cough developed and my chest felt like an elephant was yawning and stretching inside my sternum, I knew the celebration had been premature.

It’s hard for me to wrap my brain around the fact that the treatment I’m undergoing right now is a constant therapy. It’s not drugs and poison that are haplessly trying to seek and destroy cancer cells and my good cells along with it. That part is over, but not so easily forgotten. I’ve been burned so many times – 24 different chemo drugs in 9 combinations. Each one worked initially, but the cancer ultimately proved to be too resilient for any to provide a forever cure. But unlike those, this immunotherapy is my cure and I look forward to that two-year mark when I can say in great confidence that I am in long-term remission. For a long time I’ll still be leery, but at least now, with negative side effects diminishing daily, I can live my life without the physical disabilities weighing around my neck like a noose. That rope has been cut.

But again, there’s that unexpected feeling of loss. It’s like an unrequited relationship with an ex-lover. Hodgkin was destructive and abusive but somehow we kept finding each other and I kept finding myself falling back into its strangling arms. I’d dig my way out and think I’d moved on then he – it – was back with a vengeance, overtaking me. There was nowhere I could hide so I had to dance with the cancer, to adapt with it and work with it in order to get out of the relationship alive. I had to give tough love back until we could find common ground amid the battles and the tender moments. Hodgkin needed something from me and I needed something from it. I hope it is as satisfied as I am right now and that we’ll forever be able to live in harmony and peace. I’ve been running toward this peace with all my energies, now I’m happily running toward peak health with that peace I’d been seeking finally right there within my heart.

As detrimental as it was to my entire being, cancer, its treatments, and the very small world it put me in, are what’s been familiar for so long now. The aches are familiar. The fatigue is familiar. The nausea, the mood swings, the foggy headedness is familiar. What’s not familiar is being able to take a deep breath without coughing or to be able to crack a joke with perfect timing or process a scenario with ease, confidence and clarity – comforts I haven’t known in a very long time. I didn’t realize how much Hodgkin was holding me back. I love how free I feel right now. I love that all parts of me feel aligned again, a truly miraculous sensation. What’s even more miraculous is that I’m only 46 days into this forever healing. For the first time in more than two years I’m not getting better only to gear up for the next toxic therapy challenge. If I feel like this so early out of the gate, what will it be like years from now? I imagine it to be nothing less than bliss run rampant.

Cancer is and always will be a part of me in some form in the theoretical and the biological sense, but what doesn’t have to remain is the baggage that it carries. A fuzzy, painful, uneasy world was my world for a very long time, but I fell into its syncopations because I had no choice but to absorb the punches. Now I’m introducing myself into an entire new world, a world in which I’m punching back into the air with zeal. It’s not like the world I was in even before cancer: it’s even sweeter, more tender and graceful, and more inspiring by the moment. I would not realize this had I not seen what hell looks like. I would not have known the breadth of my capabilities to move, feel, think, create, and connect with others on this wild ride we call life. A life that to me is no less than heaven.

I know my relationship with cancer is not over, but I hope we remain friends. It will take a long time to heal from the forever imprints it has made on my being – a tattoo inked during a 29-month bender. I will hear, feel or taste something in the air and like a cheesy romance it will take me right back to our tumultuous times together – times of rawness a Hollywood script can’t give justice to. It’ll be just me and that trigger and the rest of the world spinning out of control around us. It can be the scent of an alcohol wipe, the sight of a pulpy blanket, the twitch of my oncologist’s eye.

The memories come flooding out of the abyss. I am in slow motion and completely transfixed with jarring flashes of PET Scan hot spots, bloody gauze, painful needle sticks, and mustard yellow-colored vomit buckets. I’ll find myself itching at glue left on my arm skin from the endless strips of medical tape – glue that isn’t there. Everything around me spins at dizzying speeds and there I am, unable to move, unable to see past the torture of my tormenting lover.

Then it’s over and I breathe and I see my scars in a new light. They are tattooed reminders of that bender that yes, I roared through, but understand that I’m still sobering up from. I’m stumbling back into clarity, still nursing the hangover, still a little buzzed.

“If you’re going through hell, keep on moving. Don’t stop now. If you’re scared don’t show it; you might get out ‘fore the devil even knows you’re there.” – Rodney Atkins

Allo Transplant Day+5 through Day+14

Since I continue to not be feeling well enough to write, I’m having Craig transcribe a basic update that I’m narrating. I’ve been in the hospital for 21 days and it’s been 14 days since the transplant. I have not left this isolation room.

Many of the side effects I recently experienced have left. Unfortunately, new ones have come in. The debilitating bladder spasms and pain is gone. I’ve regained control of my bladder and no longer have to use the commode at night. It seems chemo caused this bladder irritation.

Turned out my Hickmann Catheter line was infected so with a minor surgery they pulled that line and put in a new triple lumen catheter right next to it. Unfortunately it is in an awful spot, basically coming out of my armpit, making it tough to maneuver around, but it is working. At least the pain from the infection site is gone.

One-week post transplant my curly locks started to come out in clumps off of my head. In the shower I wet my hair and the weight of the water was enough to pull much of it from the back of my scalp and leave clumps in my hand. My scalp itched and burned so after a few days of discomfort, Craig helped me to buzz it off. I still have some stubble patches but it’s much easier to watch that fall out than longer hairs. While my eyebrows and eyelashes are still in tact, I’ve lost all my nose hair and delicate inner membranes.

I’ve had a few transformations to my bottom lip. I got incredible sores on them as well as in my mouth. The lip area has been particularly uncomfortable because it has been bumping against my teeth, is very dry, swollen, and bloody. Twice now, it has completely sloughed off. That has not been a fun experience. Right now it is pretty normal and I am just working on keeping it moisturized with vitamin A and D ointment. The sore on the back of my left inside cheek is also healing slowly.

Mentally and emotionally, I’ve been better than I anticipated. It wasn’t until day 21 that I said out loud that I’m ready to get out of here. I think it’s because I’m feeling so tired and fatigued and every day brings some new symptom so I wouldn’t want to be anywhere else right now. Here, the experts can do their best to alleviate pain, assure me that this is temporary and expected, and make me as comfortable as possible. I’m still so pleased with the caregivers and have gotten quite close with some of the nurses who have seen me in some very vulnerable moments and positions.

Craig has been with me just about all day every day, my parents have made a few trips in, and I have had visits by a few local friends. Mostly though, I have not had the energy to visit with anyone, return phone calls or emails, nor even be on the computer much. I’ll literally fall asleep typing mid-sentence or the room will spin and I’m too nauseous to focus on the computer screen.

Every day cards, packages, and messages come and I am so appreciative of these warm and gentle distractions. My room is filled with so many reminders of all of the love and support that I have behind me. The medical team is constantly remarking about how bright and well decorated it is in here.

June 29^th brought my 29^th birthday. My closest nurse knew she wouldn’t be here on the day of my birthday so she came in the day before in street clothes to bring me some funny birthday balloons. More balloons and ice cream cake arrived from the rest of the nursing staff along with tons in the mail from friends and family. On my birthday eve, friends came by for a short visit of laughs, complete with luau themed decorations. Though I was drugged up and not feeling well for most of my actual birthday, Craig was here to cheer me up with some games of Family Feud on the Wii and other distractions.

The engraftment of my sister’s cells has started and blood counts have begun to rise. My white blood cells are now at 2.5 and my neutrophils are 1.1. This means my new immune system is starting to grow and things are on track in that regard. The emerging white blood cells have helped to fight the many infections that I’ve had. My platelets and red blood cells are still low but holding. I haven’t required transfusions in the past few days. Previously, it was nearly daily that I was receiving blood products. To add some excitement, I had some scary reactions to platelet transfusions. So now, I need to be heavily pre-medicated before they transfuse.

I haven’t been able to pick up a book nor get through a movie without falling asleep. Somehow the days go by pretty fast, mostly working with the different medical professionals that come through this revolving door, and there’s a lot of napping. I’m nauseous, have been having diarrhea, and vomiting most days, sometimes many times per day, and getting very little bits of food down without it coming up. My stomach and back pain have been very uncomfortable. I can tell that my GI tract is a real mess from the chemo.

My legs and back feel very cramped up since I haven’t been able to walk more than back and forth across the room. I’m getting sick of being attached to a huge IV pole. There are many fluids running 24/7. This caused me to gain up to 15 pounds of fluid. In one night with a little over dose of Lasix, I dropped 8 pounds in just a few hours. This left me dizzy and light headed with nurses rushing to replenish my electrolytes. I am now back at my admission weight and it feels nice to not have all the swollen parts.

I miss my dog Sammy tremendously. I can’t wait to go for walks and cuddle with her when I get home. She has been staying at two wonderful “summer camps” at friend’s houses. The frequent photos and even a Skype session have helped keep me close to her.

Focusing on all that I have to return to when all this is over is a huge help. I daydream constantly about swimming, the beach, hiking, kayaking, picnics with my family, BBQ’s with friends, fire pits, camping, and smiling, laughing and joking without having any pain or discomfort to deal with. I dream about starting a family, becoming a better writer, driving my car, and being able to eat delicious foods whenever I want. I dream about exploring everything and being at the pique of carefree physical health.

The reality is that soon these side effects will stabilize and I’ll get a little bit stronger. I may be discharged as early as next week to recover at The American Cancer Society’s Hope Lodge in Manhattan. With that will be a whole new set of adventures, but most importantly I’ll enjoy some freedoms like being untethered, not getting woken up throughout the night for vitals to be checked, walking in crowdless places, and fresh New York City air. That will be nice.