A Disclaimer

If you’ve reached this site, you’re probably either an ex-boyfriend of mine, trying to dig up some dirt on my past, a potential employer trying to find out if I’m any sort of a credible employee, a Rwandan performance artist trying to remember improvisation exercises, or you could just be someone trying to figure something out about Mormonism and its queer spawn. What you’ve landed on however, are the often scattered and fairly raw musings of a 25 year old dude who just happened to be hit with a cancer that by all standards shouldn’t have hit. It did. This blog began simply as a way for my closest friends and family to communicate crucial information at the early stages of my diagnosis in July 2006 to multitudes of adoring admirers scattered throughout the world. I get around. It evolved into something more, an opportunity for me to try to articulate myself as I began a process that felt indescribable. It still does, but coaxing from siblings, gentle reminders from friends, and a stubborn inability to step down from a challenge kept me returning every few weeks to my laptop computer, to try to push something out of me, something that made some sort of sense of all of this, this pain, this endless despair, this radiant crucible.

The entries run backward chronologically, the first the last and last the first, etc. The blog ended almost as abruptly as it began, on the day I decided to end chemotherapy treatment, two years after starting. Since then, I’ve had requests for updates, but it doesn’t feel appropriate. There is something about the finite stop, the end punctuation, that feels imperative in telling this story. The story isn’t over, but this chapter is, and god-mother-fucking-damn-it if that isn’t relief I’ve been waiting a long time for.

With all my heart,

Judd

A Decision

Today was a chemo day. I went to the hospital to visit my doctor. He asked me about the excessive nausea I’ve been feeling the past few months, and whether I’ve seen any improvement in my energy over the last few weeks. I responded that the nausea was better at times, but that the fatigue had become worse the last few weeks. He examined my lymph nodes, listened to my chest and asked if there was anything else I wanted to discuss.

Yes.

I told him that I wasn’t sure if I wanted to continue with chemo for another year and a half. I haven’t been able to find anything documenting the risk a patient in my situation faces by terminating the protocol 18 months prematurely. He shrugged and admitted that he didn’t think such conclusive research existed for ALL patients, especially not for a 26 year old. If I were ten years old right now, the risks might be clearer. But as a young adult, I’ve been charting new territory from day one.

What about a break? Maybe three months or so, to collect my strength, a second wind? He argued that by taking a break, we’d be treading even lesser known waters. Truthfully, there is no way for me to have a sure assessment of what my risks are, not enough to base a decision off of. I’ve heard this before, many times. Second opinions, third opinions. All have agreed that there’s no way to truly assess what I’m risking if I quit. But this time, the implication registered. I’ll never have an absolute surety that one way is more right than another. The peace I keep waiting for to direct a decision will not come. I must decide regardless.

What would it look like, I asked, if I ended in a few months? He said he’d advise me to come for regular check-ups for the first year, at least once every few months. I nodded. That’s it? No new medication to wean me off chemo? No. I know I want chemo at least today, I replied, because I’ve already…I paused. The words sounded ingenuine. No. No, I don’t need more time to make this decision. I told my doctor that I didn’t want chemotherapy today, and that I wouldn’t be receiving it anymore. He nodded, closed his file, shook my hand and said he’d see me in September. When he left the room, I picked up my bags and the ladies behind the desk asked if I’d like to reschedule now. No thanks. They wished me a beautiful day and I left the hospital. Nothing out of the ordinary.

So I guess just like that, overcast morning in June, I’m finished with chemotherapy.

The Beast

Two best friends, three days, one chance to connect. I met Annika in Los Angeles for the weekend. I’ve been in Hawaii for six months. My universe has consisted of tourist-packed Waikiki and a retreat that resembles Jurassic Park. I felt the relief that comes from being surrounded by old friends who knew me long before I became Chemo Boy. Hawaii has been a compromise. It presents an ideal environment for someone in need of a ‘longer term’ recovery solution to nearly four years of chemotherapy. Its climate, its gentility, its clean air, its pace welcome the weary and beckon me to rest. But it came without the companionship of those who know me best. It was a pilgrimage, an homage to the isolation of chemotherapy, and a chrysalis.

A sizzling LA afternoon found Annika and I backed up in rush hour traffic, inching towards Pasadena, running an errand. The traffic was tedious, but the chance to talk was invaluable. I confessed to Annika how frightened I am. Sure the unpredictability of my future scares me, of course it always has. But rounding the two-year mark for this treatment, with an additional year and a half of therapy left, my second wind has both come and gone, as has my third and fourth. And while the finish line may be vaguely in sight somewhere in the future, I’m nowhere near that point yet. I wake up feeling miserable almost every day from these toxic drugs, and after two years, I find it hard to remember what anything else feels like.

Annika suggested that perhaps part of my fear is actually a fear of becoming better again. As she said the words, I hunched forward in my seat and sobbed. She held my hand and let my demons drive for a bit. It’s the cruelest joke, to be forced to endure this endless misery, and to have to make peace with that in order to survive. I reimagined chemotherapy as an intimate force, a lover of sorts, in order to survive. I had to. Right or wrong, sensical or non, it was my way. Either it would kill me, or I would understand it to be something very different than it first appeared, a friendly force. And I survived. But two years later, the routine of illness has demanded that I continue to lie at peace with this beast. The irony? I’m equally terrified of losing it as I am of it killing me. I don’t know who I am without this monster. I have difficulty remembering who I was before. I have more difficulty imagining who I will be after.

Annika, ever the firecracker, leapt in her seat and reminded me that it is still a beast, and while peace must be made the goal, for myself and my loved ones, is to be rid of it. Be angry with it, be frustrated to all hell with it. Point to the door and tell it to get out. Don’t ever stop fighting it.

It’s tremendously difficult to let the gravity of my situation drift out into cyber space. I’ve been lying with a terrifying beast for two years. Friendly as it occurs at times, it is still the beast on my back, burdening me with its terrible weight. And I hate it. I hate it. I loathe it so much I can’t even begin to describe the depth. This is hell, folks. And I don’t know what more to say.

Balancing Act

Coffee has long been one of my most dangerous temptations. In New York, I bordered on addiction, no worse than when I was writing. My roommates and I would put a fresh pot on sometime around seven in the morning, and usually filter out the last pot around one or two the following morning. When I started chemotherapy, it was one of the first things I cut out, mostly out of compassion for my body. There have been things all along this ride that I have had to put on the back burner: frozen margaritas, extreme diving, hallucinogens, speed dating. Simply put, my system can’t balance them. Exhibit A: an afternoon shot of Jack Daniels served as the celebration for the end of a round of chemo (I know, I know. I’m still just as blond as I acted before). My afternoon ended in convulsions on the couch. It was awesome, trust me. You had to be there.

Three months ago, I threw meditation into my morning routine, the annoying hippie kind where you sit on a yoga mat, roll your eyes back, breath in incense and hope that you’ll be visited by Ghandi or Dali. You hope, though you can’t often witness it, that something is happening as your legs squirm and your lower back quivers in agony. But something has been happening, I find myself feeling more and more balanced. My body, my life. The strangest result? I’m craving things I haven’t craved in years. I suppose they’re just thoughts, and the crude matter keeping me from nirvana. But dude, a snickers is a snickers. And I was told strictly to say ‘yes’ to anything that heals. ‘Nuff said.

Then two weeks ago, an old friend asked for permission to join the party again, my morning cup of coffee. I hesitated: coffee and chemo don’t mix. Well see, I’ve believed chemo and a lot of things don’t mix. I’ve been surprised, you wouldn’t believe how much so. So who’s to say, really? So I went and got my cup of coffee—perfect temperature, perfect milk ratio—and, not knowing where else to take it, walked with it back to my yoga mat. I sat down and drank in each warm, sinful taste. Nothing tastes better than forbidden fruit. My spine shot up, rigid. My abdomen tightened like a screw. My head began almost floating. And a tiny smile came to my face as shock registered in my eyes. That’s right, the morning cup of coffee was actually helping me to balance. I held it out, let it tilt a bit, played with it’s proximity to my stomach. I could feel my body struggling to keep up with this added weight. But I smiled down to the last drop, remembering mornings in Brooklyn and musical epiphanies. Quality memory in this case outweighs health benefit.

When you give something up, I think you’re always secretly terrified that you won’t get it back. Chemotherapy has been a journey of giving up for me, and also trusting that it will all come back, whether it’s a tolerance for late night parties (one of my favorite pre-chemo rituals) or a relationship. It takes time, it takes patience. A lot. But little by little, I’m starting to notice that I can very naturally balance things that I couldn’t before. For someone like me, who has come to see every minute step of this as an adventure, this is a giant leap in recovery. But I suppose it’s only a very small step for a former coffee junkie.

Calling for Reinforcements

Chemotherapy treatments often prove far less climactic than I expect them to. But last week knocked the wind out of me. I was feeling slightly under-the-weather before my first treatment on Monday, but then afterwards I began experiencing a sharp pain, running up and down my hips and legs. It felt similar to a pinched nerve in my sacrum, but much deeper, in my groin. Vincenzo came with me again from Kalani, and proved how invaluable a friend can be in times like this. It took the full weight of his body pressing against my back to access a stretch deep enough to relax the waves of pain. An hour and two South Park episodes later, I was completely calm, but feeling as though I’d just ascended Mount Kilmanjaro.

Two days later, another chemo treatment. This time it was my monthly lumbar puncture, a needle that punctures my spinal column, delivering chemotherapy to my central nervous system. It’s a routine procedure in my treatment; I seldom ever feel much significant discomfort afterwards. But that night, as the numbing medication wore off, the area where the needle penetrated—close to the spot where the pain had centered earlier—began throbbing. It felt as though electric currents were pulsing up and down my legs, my hips, and my lower back. Two years into this experience, my body has learned to anticipate any pain’s possible crescendo. One part starts hurting, the others want to join the party. So my shoulders tensed, my neck pinched and my jaw tightened. It was a similar process to the earlier night, but the needle’s sharp invasion deep in my sacrum made it much harder to relax. When I finally did, my body was wringing with sweat, exhausted and weary.

So we called for back up. Hawaii provides, it always amazes me how much so. The following two days, I was pampered lavishly in the hands of beautiful massage therapists, provided by the Waikiki Marriot Spa. A friend of mine, Henry, works at the spa and introduced me to the gang several months ago. At this point, I’ve become the spa’s pet project. The team got right to work when they saw my condition: shoulders, hips, legs, neck. Acupuncture, lymphatic drainage, full body scrubs, even a pedicure thrown in there. There are times when pampering feels a luxury. There are times when luxury feels a necessity. Back at the Hotel Renew, which has become my second home in Waikiki, a separate team of hotel care takers snuck into my room, leaving beautiful flowers, fresh fruit and plenty of candy bars. I was touched by the generosity of so many who know so little about me. My confidence feels shaken. This can be the most frightening experience to walk through alone, especially when I get thrown a curve ball like this pain. It is all I can do to muster the strength to face it and consciously relax it. I cannot do this alone, and that’s hard to admit. I mean I’ve certainly tried, but it’s hell. So it’s a heaven-send to have a sudden surplus of strong, reliable people all around me, capable of stepping in and lending some muscle to the cause, quite literally—apparently—if the situation calls for it.

Method in Madness

I recently started jumping again. I used to jump all the time when I was younger. Our family had a gigantic trampoline. But I kicked the habit in my mid teens and hadn’t relapsed until the other night when I was passing Kalani’s small weight room. I saw a mini tramp. No one was watching so I bounced once, just to remember what it used to feel like. It felt good. So I bounced again. The next day I brought my ipod. Even more fun. But today, there were other people working out in the gym. I knew I’d get uncool points if I was caught wiggling on the tramp, and I want desperately to look cool. So instead I bounced nonchalantly, as though prepping for a serious workout. Until a groovy song came on, too groovy to pass up, and my butt started doing the wiggle. Before I could stop myself, I was channeling James Brown’s rear end.

It’s a subtle practice, this jumping business. I jump up, gravity takes over and everything my body has to offer the ground comes crashing down, thud. I can instantly feel where my body is supported and where my knees buckle and my hips turn inwards. But then something miraculous. Momentum, counterbalancing gravity, lifts my body from the ground and I experience, for a moment, weightlessness. It is ecstatic. My mind soars as I feel supported by air. I come down again and parts of my body that before were quivering are now slightly stronger, a miniscule amount of growth, but solid, tangible growth nonetheless.

I’ve always resisted stillness. When I was diagnosed with cancer, the thought of being forced to stay in one place possibly for the rest of my life terrified me. But I have come to relish stillness like a fine wine. The trick has been developing method, breaking down the impossible into infinitesimal steps, each built on the solid foundation of the previous. Can’t becomes can-at-a-different-pace. When I think my body can’t sustain, I calm down and watch for that subtle bounce that lands on a stronger core each time, more aware of how to support itself with each breath. And the amazing part is that every time I look for the support, it’s there. And that feels just, well, enlightening.

Waves of Pleasure

There’s a scene from a movie that I’ve loved for too long, alas, in secret. It’s from the musical “Annie,” perhaps the reason my love remains a secret. Annie’s being shown around Daddy Warbucks’ pimped crib when suddenly the staff, not knowing a better way to clarify daily household tasks, bursts into song and dance, showering Annie with endless luxury as she bats her eyes, sighing, “I think I’m gonna like it here.” C’mon, who doesn’t like to indulge? Who doesn’t quietly purr at the taste of warm tollhouse cookies? I always have, but then usually remind myself afterward to add an extra ab crunch to my workout the next morning. My pleasure has only been acceptable when it has been accompanied by a decent amount of guilt. I’ve always resisted indulgence. Everything in moderation, right?

And then cancer. And that rule went right out the window when I woke up at 6:30am desperate for a burrito, fettuccini alfredo, French fries, two chocolate shakes and three snickers bars. It’s called survival, the body balancing one extreme force moving through it with another extreme force, trans fat. I spent my first year of chemo approaching this “over” indulgence with the enthusiasm of an amoeba. “I guess I’ll let myself take a third nap today” or “I suppose a massage wouldn’t kill me in the middle of chemo.”

But in Hawaii, indulgence is a finely crafted art. Excess is noticeable. It walks around with a sunburnt face the color of a lobster, drunkenly vomiting its six maitais. But those who have refined the experience know how to surf pleasure’s blissful waves impeccably. So as my Hawaiian ohana has stepped forward with their healing offerings, each has brought a wave more pleasurable than the last. A bowl of fresh fruit left on my table, perfectly shaped by an artist’s eye. A spontaneous haircut—from a celeb stylist—that launches a discourse on cosmic attraction. Laundry cleaned. Coconuts hacked. Body rubbed. Each gesture nearly belts “we know you’re gonna like it here!” I could snub the generosity, true. In a parallel life where I hadn’t learned to cling so desperately to even small pleasures to survive, I would. But right now, allowing myself to continuously connect to the world’s unending supply of generosity—without guilt or shame—is not only important, it is essential to healing. So I suppose that means I have something to tell you. I like Annie. A lot.

OK. I feel better.