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| Photo by Frankicello |
When did I know that my body had a Life-threatening Disease in Residence?
My Long and Winding Road to Diagnosis began in June 2008, ten months before I was given The Bad News. I was at home, chatting in the hallway with my roommate, Adam, after a day at the office. I wore a sky-blue button-down shirt and gray slacks. While we conversed, I touched the area by my left clavicle. There was a lump. It seemed peculiar, though I never made a habit of touching that part of my body. I reached over to my right clavicle to see if I had a symmetrical lump.
I didn’t.
I made an appointment to see my doctor the following week.
“What you have is a swollen lymph node,” Dr. Chen said in the examination room, after he felt it. “There are a number of things that can cause a swollen lymph node. It’s usually from an infection or a cold. Have you recently had a cold?”
“No,” I said.
“Have you been scratched by a cat lately?”
I nearly laughed. It seemed like a curious question, but that’s why he got paid the big bucks and why I forked over $15 co-pays to be in his smarty-pants presence.
“I don’t think so. My parents have a cat, but she hasn’t scratched me recently.”
He went on to explain that cat scratch fever (yes, its not just a Ted Nugent song) can also cause swollen lymph nodes. Other possible causes were HIV (yikes!), histoplasmosis, sarcoidosis, tuberculosis, and lymphoma—a blood cancer. After he asked a number of questions that seemed to eliminate those possibilities—minus cancer—he ordered blood tests to be certain that I didn’t have any of those ailments. A few days later, my results came back fine.
The following week, I returned to Kaiser Hospital for a chest x-ray. Dr. Chen called a few days later. He left a voicemail message, which I played back four or five times, start to finish, to absorb every word, every nuance in his tone. He sounded clinical, devoid of emotion as usual, but I swore I heard a smidgeon of concern when he said that he had spoken at length with the radiologist concerning my x-ray. The space between my lungs, he reported, was “abnormal”—wider than it should be in a normal male due to “a large mass of lymph nodes.” He ordered a CT scan (short for computed tomography, which is a series of x-ray views that combine to make a 3-D scan of your internal body) the following week, along with additional blood tests.
That was June 26th, 2008—the first time my stomach twisted at the specter of C-A-N-C-E-R.
I bicycled to the hospital for my CT scan appointment. In the waiting area outside the CT scan room, I sat wearing only my chonies, socks, and a hospital gown. My hands felt clammy. Beside me was an Asian man in his fifties and a woman of the same age who must have been his wife. He was stripped to a hospital gown, too. They huddled close together while they spoke in their native tongue. I had no idea what they were saying but their body language told me they were deeply concerned about the results of his CT scan. In my experience, Asian people their age typically aren’t affectionate like that in public, which made it all that more exceptional. She was there to support him. When I realized that, I became even more nervous. Hearing the cold, automated voice of the CT scan machine saying the commands “Hold your breath” and “Breathe” behind the closed door didn’t help either. Before I knew it, I felt as though I were in a modern-day hospital episode of The Twilight Zone, starring Hal-9000 from 2001: A Space Odyssey. (“I’m afraid. I’m afraid, Juan.”)
The CT scan didn’t show much more than the chest x-ray had. My blood counts came back normal. Dr. Chen and I had exhausted all possibilities to explain the swollen gland until the only option was to snip it off for biopsy.
To confirm if I had lymphoma or not.
* * *
Did I know in my heart that I had cancer after I visited Dr. Chen the following week?
I am not sure if I will ever forget that last visit I had with him. I was beat and tired from work. Bags under my eyes from partying a little too much to get my mind off of troublesome thoughts like the possibility of having cancer. Dr. Chen’s tone had become graver with each visit I had since discovering the lump by my clavicle.
A number of months before that final visit, I was having my periodic sleeping problems. I asked Dr. Chen for some pills to help me sleep. I asked for a few—enough to last a week or two. He refused. He told me they weren’t effective long or short-term remedies for insomnia, which I already knew.
But now, months later, I sat across from him in an examination room, beneath that cold, bleach-white light. He leaned forward, his head bent to the side. He looked at me in a compassionate, I’m-concerned-about-you way and said, “Is there anything I can get for you?”
Inside, I shit myself when I heard those words. Inside, it felt like my head rolled off my shoulder, splintering on the floor while it cackled hahahahahahaaaa! I’m fucked! I’m FUCKED! NOW he’s willing to hook a brother up with pills because I am FUCKED!
But instead, I shook my head.
“No, I’m okay,” I said, trying not to hang my head and cry.
When I stepped out of the hospital, I had difficulty thinking. A blustery wind blew. It felt like there was a whirlwind blowing through my head. I had a strong urge to call my co-worker, Caitlin. Until then, she was the only person whom I had confided my health fears with. I had not told my family a thing. I didn’t want to scare them. In the end, I didn’t call her. I didn’t want to burden anyone with my troubles.
I unlocked my bike, put my helmet and gloves on and took my iPod out of my backpack. With my bicycle beside me, I walked to the busy corner of Geary and Divisadero listening to a José José ballad I hoped would settle me. When the light turned green, I hurriedly pedaled across the street. Once across, I rode close to the parked cars while traffic whizzed past me. Then I cycled through a signal. I only realized it was a red light once I crossed it. My mind was so rattled that I couldn’t focus on something as automatic and crucial as not crossing a red light. A car could have smacked me into windshield-wiper splatter long before a potential cancer invasion could kill me.
That night, I went barhopping with Caitlin. I got plastered. Blurred all senses. Uttered those fears. Diluted them by voicing them to her. Early that evening, when I was merely tipsy, I walked to the dark, grimy, graffiti and stickered bathroom at Dalva. I bent over the toilet that stank of urine. I coughed out saliva that was salty from the contrast dye that had been injected into my arm for the CT scan. It occurred to me that I was viscerally spitting out what was plaguing me. “Ha! How appropriate is that,” I thought when I walked to the sink to rinse the phlegm out of my mouth.
* * * * * * *
On July 21st, I met with a surgeon about scheduling a biopsy. We met for about two minutes in an examination room before he escorted me to the receptionist to schedule the “minor surgical procedure.” (Minor? Haa! Dude, there’s nothing “minor” about the potential results.) We were unable to find an available date before I left my job and lost my coverage in four days, before I left on one last vacation prior to starting grad school. I asked the surgeon if I should be concerned that I was not getting this procedure done as soon as possible. He grinned and patted me on the shoulder. “You’ll be fine,” he said. “Enjoy your vacation, Mr. Alvarado.” It was a remarkable contrast to Dr. Chen’s increasingly bleak tone. Essentially, he was saying, “Smoke a blunt, chill out, enjoy the rays.”
A week later, my feet sifted through the soft white sand of Haad Rin, one of Ko Pha Ngan’s tropical beaches. I gazed out to the tranquil ocean. My first afternoon on that Thai island, sitting cross-legged on a blanket at the most beautiful beach I have ever seen, I had a quandary: how can I relax and enjoy this when I’m seriously worried about my health? Everywhere I looked, I saw couples wading and frolicking in the twinkling waves, fellow travelers laughing as they ran and splashed after a rubber ball that they skipped along the blue water, people basking on towels all over the beach, their tanned bodies glistening in the sun. I felt like a pretender. An imposter. Their carefree spirit was something that was not churning within me. Not when I couldn’t help but remember Dr. Chen’s expression when he asked, “Is there anything I can get for you?”
That afternoon was the first time I had to train my mind to do something similar to a Jedi mind trick. It was a trick I had to employ at other intervals of my “cancer journey.” 1 With my eyes fixed on the horizon, where the twinkling ocean seemingly met the azure sky, I straightened my posture while sitting cross-legged on my towel. I concentrated on the lapping waves. I recalled the surgeon’s smoke-a-blunt, enjoy-your-vacation attitude and told myself: while you’re here, there is nothing you can do about your health. Enjoy your time here because you should presume you’ll never have the privilege, the opportunity to be back. Enjoy the present, what you have right now. Worry about your health when you get back.
I lay back on my towel, covering my eyes from the sun. Breathing slowly while repeating those thoughts, I was, to my amazement, able to chillax. The sound of bustle and laughter were drowned out by the meshing of my breathing and the lapping waves.
After my three-week vacation in Thailand and Cambodia, I returned home to begin my graduate studies at Saint Mary’s College in September 2008. It had been seven years since I had been a student, studying Cinema at San Francisco State. (Back then, I dreamt of being a film auteur like Stanley Kubrick, Billy Wilder, or David Fincher.) Being there, walking around campus with a backpack amongst fellow word nerds and teachers who also thirsted and lived to read and write good stories was nourishing for my spirit. From the get-go, I felt at home. Contented. At peace with myself. I had found a corner of this world where I belonged.
It took several weeks before I began to acclimate to the rhythm of being a full-time student, of working my life around my classes and homework instead of a full-time job. Graduate school felt like being swallowed up by a splendid, tubular wave (cowabunga!) That’s why it took some time to get myself oriented to my new life, let alone remember, oh yeah, shit. I might have a serious health problem!—a deadly serious problem. I had done such a bang-up job of pushing those cancer whispers out of my mind while I was in Southeast Asia.
In the fall, I secured health coverage through the city. I was seen by a new doctor who scheduled a biopsy of my swollen lymph node for November 24, 2008. The procedure would take about half an hour. And I wouldn’t have to be knocked unconscious.
I went alone to the hospital. My parents wanted to accompany me but the doctors did not require that someone provide me with a ride after the procedure. Having them drive 40 miles from Fremont to San Francisco to give me a paltry 1.2 mile ride home seemed wasteful. Instead, I took the bus to and from the hospital since the doctor told me I might be too woozy to cycle home.
The week after Thanksgiving—my favorite holiday—I got the results. They were ( - ). It was a relief for my family and me. However—and probably the biggest However of my life—the doctors had warned me that the blood cells from the swollen lymph node could test negative but I could still have cancer elsewhere in my body.
* * *
Did I know I had cancer when the skin on my left calf got itchy?
During November and December, my left calf became unusually itchy. At first, I figured it was due to cycling to Saint Mary’s three times a week in the cold. My legs got super-sweaty from cycling five miles to and from the Lafayette station. I thought my calves were getting dry and subsequently itchy from this. Or perhaps it was mild eczema—something I have never had—since the rashes from itching did look like it.
I thought nothing of the itching—other than it was odd.
Swollen-lymph-node odd.
My first semester of grad school finished in mid December. Christmas passed. The beginning of a new calendar year was celebrated. Physically, I felt great. Normal like I always had. Since the biopsy tested negative, I figured the swollen lymph node that was removed from my body was an anomaly. A freak occurrence that was not indicative of anything bad—graveyard-bad—growing inside of me.
Even though I tried to convince myself that my swollen lymph node was nothing, I became frightened of touching the area where it had been. After the incisions healed, a tiny bump took its place. Scar tissue, I reasoned. As the weeks passed, I could tell it was still there since I felt some discomfort whenever the shoulder strap from my backpack pressed against it when I bicycled. I was terrified that another swollen lymph node would grow back. And so, that part of my own body became off-limits. A no-touch zone. Every morning when I showered, I was careful to gently pass the soap over my clavicle area so that there was NO WAY my fingers would feel a telltale bump.
* * *
Or did I really know I had cancer when two swollen lymph nodes grew back?
Classes commenced the first week of February. The hillsides by school bloomed a verdant green. For my Craft of Fiction class, we had to read Paula Fox’s Desperate Characters over the weekend. I was at home, reading the book in the living room, curled up on our green couch. The house was quiet, tranquil, since my roommates were out about the town.
Near the beginning of Fox’s novel, one of the protagonists—the wife in a deteriorating marriage—is bitten by a cat. Her wound does not heal quickly. She becomes concerned that the cat was rabid. While I kept reading, watching her struggle to assuage and deny her fears, I couldn’t help but think about the fears I had over my health. Ever since the cancer whispers began six months before when Dr. Chen couldn’t figure out what was causing my swollen lymph node, the books and student manuscripts I read for school became a peerless distraction from those fears. But now I was reading about a character, a situation that closely mirrored my own.
The cancer whispers blared while I read the book. I had to close it, set it aside. I couldn’t concentrate. I couldn’t follow the storyline. I had to face the grave uncertainty I had felt for months. The house was deafening quiet when I raised my hand to my clavicle and pressed two fingers over the scar I had from the biopsy. There was a bump—a round, oblong one that was not scar tissue. My face began to flush hot while my fingers dug into the crook by my clavicle.
Oh my god oh my god oh my god oh my god.
Not only was there a swollen lymph node replacing the one that had been removed, but there was also a smaller one, deeper beneath the surface of my skin.
Oh my god oh my god oh my god oh my god oh my god oh my god oh my god oh my god something’s wrong! something’s VERY wrong! I THINK YOU HAVE CANCER! I THINK YOU HAVE CANCER! I THINK YOU HAVE CANCER!
Now when I look back, that was the moment I must have known I had lymphoma. I knew, without a doubt, that there was something wrong with my body. Despite that, I still clung onto an increasingly unrealistic hope that it was something other than cancer. There was no way I would accept that without an official diagnosis. (And who would?)
Two surgeries 2 and two worry-filled months later, despite the fact that I felt physically great, despite the fact that both sides of my family have no history of cancer, I was diagnosed with Stage 2A Hodgkin lymphoma, a rare dis-ease that annually comprises 1% of all cancer diagnoses in the United States.
I felt like a lamb walking along a plain on a cloudless day before being struck by lightning.
1 This is the term people in and around cancer—particularly medical caregivers—like to use to refer to this period of our lives. It’s a term I was never comfortable with. The word “journey” implies a sort of willingness, which I never fucking had. The word “journey” following the word “cancer” has a softening quality, as though what was happening would ultimately be fine. Safe. Not quite a cruise on The Love Boat, but not too entirely off. But cancer is far from that. More like being dumped into the middle of an ocean at night with only a life vest.↩
2 I used to get animated when I described the second surgery on My Long and Winding Road to Diagnosis—a CT-guided needle aspiration—to my friends. I usually began by saying, “Remember the scene in Pulp Fiction when John Travolta’s character had to plunge a needle into Uma Thurman’s chest? It was kind of like that.”
A white light glared down on me in the surgery room. Two nurses—a tall, funny, middle-aged guy who was like a less flamboyant John Waters and a heartachingly gorgeous brunette—laid me down on a tray that could slide through the ring-shaped machine. They covered the lower half of my body with a blanket. The CT scan operator advanced me in and out of the whirly-sounding machine a number of times to pinpoint the exact location of the worrisome nodule off my right lung. (A nodule is a term radiologists use to describe a knob, a knot, or something unusual on a CT scan that they cannot identify.) The surgeon—a handsome Asian man who was calm and smiley—made an X below my right nipple with a marker. The nurses injected four numbing medications around it. I clenched the blanket. Then they stuck a small needle into the X spot and left it there like a raised flag. They put me through the CT scan again; the needle planted in my chest was an inch away from hitting the top of the machine. Once they confirmed they had it in the right spot, they pulled me out to lie beneath the bright light.
The surgeon stepped toward the back of the room where the nurses, a pulmonary assistant, and a pathologist stood by the wall. They stood by in case the four-inch needle the surgeon was going to plunge into my body punctured my lung. From my vantage, laying on the sliding x-ray table, I could see and hear the surgeon unwrapping something. But his back was to me. He walked to my left side, holding something against his side.
“Okay—now close your eyes and hold your breath!” he said.
I closed my eyes, took a deep breath, and held it for a long time before he said, “Okay, you can breathe.”
What he had done was plunge a thin, four-inch long needle within the one in my chest to extract—aspirate—a sample of the nodule. I barely felt a thing but my goddamn curiosity got the better of me; after he did it a third or fourth time, I opened my eyes for a flash. I saw his arm, lift and plunge, lift and plunge what looked like a wire-thin clothes hanger (if it were straightened out) into my chest. He did that horror-flick act at least six times before the pathologist confirmed that a sample sufficient for testing had been yielded. By the end of the surgery, the parts of the blanket I clung to were drenched in sweat.
The result a week later? “Non-diagnostic,” which meant they couldn’t determine if the nodule sample was benign or malignant.
So back to Limbo I went.
(Here’s a kōan: if a man has cancer but is not diagnosed, does he really have cancer?)↩
