Circa 2011
In the final days of 2010, Ran Michels, a retail store manager in Southern California, had half of his tongue removed. It was then reconstructed using skin and flesh from other parts of his body. The following is Michel’s journal of his battle against cancer and his experience with treatment.
A CRASH COURSE IN CANCER
Like starting a new job, being diagnosed with cancer entails having to learn the lay of the land. It’s only been a couple of weeks since my diagnosis, so I’m no expert. I do, however, gather more information every day. If you or someone you know was recently diagnosed with cancer, please feel free to benefit from my knowledge. (Spoiler alert: if you drink alcohol, you might not like one of the lessons I had to learn).
Day one. Doctors grill me: “How did you get this growth?”, they ask me over and over again, trying to trick me into different answers. This question-andanswer process is not unlike those “surveys” you’re given when applying for a retail job—the surveys that peck away with such ridiculous questions as, “if your grandmother was shopping at an art store and put a tube of paint into her purse, would you say anything?”
When you have cancer of the tongue, doctors ask a bunch of different questions to find out how much you really smoke and/or drink, since alcohol is the number two cause of oral cancers. I don’t drink all that much, even though I make amazing booze balls! (I rarely eat them, though. I didn’t drop almost 90 pounds by scarfing down plates of pastries filled with tequila and cognac!)
My discovery that drinking is el numero dos cause of oral cancer comes as beyond a shock. Why are bottles not covered in Surgeon General warnings? Okay, they are, but those warnings are usually about the dangers of drinking while pregnant. If a bottle of Captain Meyers had the warning, Drinking rum on a frequent basis can lead to having half your tongue removed and replaced with skin and fat from your wrist, believe me, I would have been all ears.
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FIRST THINGS FIRST
I meet with my surgeon, Dr Oh, who tells me my operation will take approximately 10 hours, including five hours to remove what I’ve got, and five hours to install what I’m getting. I will be sedated for some time, I’m told.
There is an old joke about the reason patients are called patients. I don’t remember the whole thing, but the point is that you must be patient while waiting for your doctor to get anything done. Or maybe the joke was about how long you had to wait for your doctor to even see you. Who among us hasn’t had the irritation of making a 9:30 doctor’s appointment, only to sit in the waiting room for 45 minutes to an hour?
On a typical doctor’s visit, a nurse moves me to the examination room, and on the way down the hall I notice three or four other patients, waiting. I briefly make eye contact with them, and they roll their eyes as if to warn me that I’ve now entered the real waiting room.
Another 45 minutes pass, and the nurse pops in to apologize and let me know the doctor will be with me “shortly.” I begin to wonder if the doctor is even in the building. I become irritable, and consider calling my job to let them know that I’ve been kidnapped by the medical profession. I expect that sort of call will be met with sympathy, because everyone in the world, including bosses, has been there and completely understands.
Finally there is a quiet rap on the exam room door, and my doctor appears, all cheery as if I haven’t been waiting more than two or three minutes. He asks why I’m there, listens to my lungs, and runs from the room with instructions to pick up a prescription from the nurse. Time spent waiting: all morning. Time spent with doctor: five minutes.
But this is no typical doctor’s visit. If your five-minute encounter with the doctor reveals something “troublesome,” you won’t be waiting around doctor’s offices anymore. You’ll be ushered right past the other jealous patients, who would in no way trade places with you if they knew the real reason for your VIP treatment. The doctor keeps his appointment times and spends as much time with you as needed, answering all of your questions. You suddenly find yourself longing for the days of sitting around the waiting room, bored and flipping through a mangled copy of Better Homes and Gardens.
I know time is of the essence when dealing with cancer, but it would be nice to have just a moment to take a breath and think. Now I don’t have the patience I developed over the years, waiting on doctors. Now I’m just a patient.
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“THE BEST LAID PLANS…”
We all know this saying, and yet we go on, day-by-day, continuing to plan. My plan was called “Sexy by 50.” It started out based on something that my dear friend, Cynthia, once said: don’t allow yourself to turn 40 and not be sexy. Well 40 had come and gone, and I hadn’t heeded her advice. I found myself almost 45 years old, and 90 pounds overweight. I made a promise to myself that I would not turn the big 4-5 weighing the big 2-0-0.
Weight Watchers helped me shed the weight. Still, sexy managed to elude me. Sure, I was in the best shape of my life, but I just couldn’t manage to see myself as sexy. Being diagnosed with cancer didn’t help. There is nothing sexy about that! Having cancer and being sexy at the same time is just not doable.
The light at the end of the tunnel for me is this: I’m not yet 50, so I’m sticking to my plan to be cancer-free and sexy for my big day. Yes, I’ll have a couple of new scars, but scars can be sexy: just look at Joaquin Phoenix! For those with truly diverse tastes, I’ll have a cute, two-tone tongue. Hey, I’m going to make this work!
The reality is, sexy is a state of mind. I’m not there yet, but I get glimpses. I saw myself in a mirror at the theater last month and realized I looked damn good. I’d call that a step in the right direction. Years ago, while taking to my dad, I’d informed him that I had discovered I was masculine. “How’d you discover that?” he asked.
“I changed my definition of the word,” I had said. I was smart enough in my 20s to realize there were different types of masculinity, and now, in my late 40s, I realize there are different types of sexy. I’m going with it.
On Monday, when they remove the tumor—and the half of my tongue in which it’s embedded—I will no longer have cancer! Now that’s sexy! And survive cancer I will. So, in a couple of years, when you see this handsome guy with green eyes, spiky grey hair and a slim physique, you just might say: Damn, he’s sexy!
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COLD FEET
It’s just 18 hours until my surgery and, like many people facing a life-changing moment, I have cold feet. Actually, I’m having a full-blown anxiety attack. Talk yourself off the ledge, I keep telling myself—and, little by little, it’s working. I have a wonderful care team. My partner, Ken, is amazing. I have a great surgeon, whom I’d Googled to check out. My friends and family are standing by, to provide whatever I need, whenever I need it. So, really, what is the problem here?
It’s sort of like that nagging feeling you get when you’re driving to work and you begin to wonder if you’ve left the stove on—times 1,000!
This is my life we are talking about here, and I am facing a 10-hour surgery, during which half of my tongue will be removed and replaced with a flap of skin and fat from my wrist. Oddly enough, I’m not afraid of the surgery. I’m afraid of the anesthesia.
The symbolic “stove” I have left on represents the loose threads of my life. The possibility I could die tomorrow afternoon because some careless anesthesiologist is daydreaming about his date from last weekend freaks me out about all of the things I might have left unsaid.
I love to talk. If my mouth were a car, I would have a pile of tickets for cutting people off, driving over the speed limit, and running red lights. But I am faced now with the truth that there were many times when, instead of listening to what someone was saying to me, I concocted what I was going to say next to him. When I cut Ken off, which happens pretty much daily, he gets pissed and stops talking to me. But for some reason, that hasn’t really corrected my behavior.
If I consider my condition from a metaphysical standpoint, I think I have cancer of the “talking too much and listening too little” variety. What better way for the universe to force me to listen than to still my tongue for a while? Listening is a skill I plan to learn over the next several months, because not learning it could have serious consequences!
Every major event, no matter how difficult, has the potential to make you a better person. A cancer diagnosis is no different. I choose to keep my eyes and ears open, in the hope that I’ll learn whatever lessons are in store for me. I intend to use that information for its highest good and be transformed into my new, higher self.
Looking back, it is clear to me now that just calling to say “hi” to loved ones trumps all the calls I made to tell them I got a raise at work, or that I just bought a new car. The list of people I want to phone and tell how I feel about them grows and grows and grows, but my time to talk to them has run out. How will Ken ever know I have cherished every single second of our relationship, even when I wanted to kill him? How will Steve and Ruthie, Ken’s mom and dad, know they have become my parents too? How will my friends know how cool they all are? And how will my dad know I could have not asked for a better father?
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WHAT THEY SAY, WHOEVER THEY ARE
It’s post-surgery, and I’m typing this with a splint on one arm, since my arm is where doctors got the raw materials for my new tongue.
People refer to cancer as the “C” word. We say cancer is frightening. We drive past hospitals, only knowing what we’ve seen on Grey’s Anatomy. We live our lives in fear, not speaking the “C” word, lest we bring a pox upon our house. We give to cancer charities, we do walk-athons— and for what?
I hate to admit this, but I always thought about breast cancer as a little “lump” that you could just cut out. What’s the big deal, right? Now I feel as if I have paid the high price for both my lack of compassion and my ignorance.
When the doctor first told me what I was facing, I wanted to say, “Get it out. Move.” That’s how I went into the treatment process: eager. Eager for the whole thing to be over. Today, I probably would have lingered, gone to a beach and cleansed myself in the Pacific. Gone to New Orleans for a quick beignet and a soothing stroll along the Mississippi River. There are about a thousand things I should have done, because in my ignorance I didn’t know the truth of what was about to happen. Here’s the real deal:
“If my mouth were a car, I would have a pill of tickets for cutting people off, driving over the speed limit, and running red lights. But I am faced now with the truth that there were many times when, instead of listening to what someone was saying to me, I concocted with I was going to say net to them”
Doctors removed half of my tongue and replaced it with a graft, which is basically a tongue created out of other body parts. After surgery, I had two IVs. I remember the pain of coming back to consciousness. Hey, you’re hurting me. Why are you hurting me? I remember my bed being rolled around a maze of walls and into an elevator. The volume of the ride was cranked up by the hallucinogenic effects of the morphine. (They need to come up with some pain medications that don’t have that effect.) This was a doubly bad trip.
Each new corner was a new entity, and sometimes a demonic one. Finally, in my room, there was no sleep to be had. People prodded me constantly, checking various items on their hourly schedules. I was given a morphine pump that my nurse called “my new best friend.” I was told I could push the button every ten minutes for liquid relief. I watched the clock, which seemed frozen in time. Though I pressed the pump, relief never arrived.
For the first two days, the nurses were completely mine, though I’ve come to understand that this is a luxury. None of them spoke English as their first language, and all had heavy accents. (And there I was, with no tongue, unable to speak at all). By day two, I was allowed to sleep for two hours at a time, still plugging away at the morphine drip. After my dear friend Theresa paid a visit and turned into a black foam demon, I decided to get off the drugs. But now the pain is freaking me out.
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TOUGH LOVE
I stopped pushing the little button and requested to be taken off all morphine, altogether. The light started to shine through the corners of my drug haze. Nurses, who had hovered around me during my first 48 hours, were nowhere to be found once they’d removed the catheter. Regular suctioning of the tracheotomy that had been installed in my throat drummed up images I had vowed to forget during my mother’s last hours.
I couldn’t help but remember my mother’s helplessness, and the weakness and fear she had felt, when she was not able to breathe for even a couple of seconds. Finally, Lew, one of my nurses, informed me that I needed to get up and walk. My road to recovery was going to be walked by me alone. Lew let me know she was busy, and that I, too, needed to get busy healing myself. She also mentioned that when she had undergone a serious surgery, she had not taken painkillers but instead kept walking the halls until her release. This woman knows something about getting better!
When my partner, Ken, walked into the room, my first words of the day—all written down—were that I needed a walk. I was helped up, walked around a short while, and when I returned to the bed, I felt better than I had in days. Walking therapy works! I vowed to myself to keep at it. I bugged all my friends who came to visit to walk me, as I had to be assisted. Yes, there was discomfort, but amazingly, no actual pain.
On my fourth night in the hospital, I was placed in my own room, just down the hall from the intensive care unit. The nurses in my new room ran the gamut from sweet to simply a warm body in a uniform. I actually preferred the “bare minimum” nurses: they ignored the order for assisted walks and let me walk on my own. I figured that there were wheelchairs just around each corner, and that I could always have a seat if I ran out of breath.
My rude awakening came when I failed to remember that I was on a liquid diet—nutrients were provided through a feeding tube in my nose—and during one of the walks, started to feel warm drops down the backs of my legs. I sheepishly wound my way back to my room, hoping I wasn’t leaving a trail, and called for the nurse, who was none too pleased. I remember that sponge bath particularly well.
The next day came as a shock: I felt like crap. What? How was this possible? I’d been walking! On the road to recovery, some potholes suddenly appeared, and I was in the dumps. Maybe it was a result of staff morale, or the fact that I’d just finished the best book that I’d read in years, The Coffee Shop Chronicles of New Orleans, by David Lummis, and was suffering from post-goodbook depression. (You know that final page is coming soon, and then BAM! it’s over.) Ken had come by and had already left, and I was suddenly realizing just how long the road back to health might take to travel. This recovery wasn’t going to be a matter of days, but months, and I felt drained. Then Dr. Oh came in. “You’re doing well,” he told me. “I’m going to release you tomorrow!”
What? I still felt like such crap! Still, I was happy to be heading home. This is going to be the best year of your life so far, I thought. As you heal, you’ll really get to see what you’re made of.
I already knew I was being challenged in a way I had never been before. By necessity, I would now begin walking a very different path. I could choose to become more healthy than I’d ever been before, and to learn to love like never before. I witnessed the light in the eyes of the friends and family who were brave enough to take this journey with me, and I felt blessed.
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GOOD JEANS AND GREAT GENES
First, an update: I saw the doctor yesterday and found out the surgeons removed all the cancer from my tongue! Unfortunately, on a microscopic level, it has spread to my lymph nodes on the right side of my neck. In a few weeks, I will need to undergo radiation and, most likely, chemotherapy. I am disappointed, of course, but know I have the strength to get through this. I didn’t feel this strong when I first heard my diagnosis in the doctor’s office, but after not being able to sleep for hours, I remembered the truth about myself: I am tough!
My healing is happening at an amazing pace, which has surprised even my doctor. My breathing tube was removed today, as was my feeding tube. I even got to take a shower, after some creative plastic wrapping was done for the casts on my arm and leg.
I don’t know why, but today I am thankful for jeans. There’s nothing like a good pair. The best jeans become a part of you and define you. You drag them out whenever you’re down, or whenever you’re up, because you want to look your best. I spent years rejecting jeans, but just last year I bought a pair I love and rarely take them off. They have a sleek, dark wash that you can dress up or down. The denim market has exploded over the past 20 years. My favorite jeans do not have a fancy pedigree. They only cost $35, and are your basic Levi’s, the American classic.
Good jeans don’t become a part of you—they are you. So you try to choose well. Good genes (or, what you hope are good genes) are handed down to you. You don’t get to choose them. Some people are sleek, some are tall. Some people are a bit big-busted, some get a big tush. Some people’s genes have a lineage of cancer. My genes, much like the denim I wear, seem to be of a simple lot. German farmer stock, Irish and Cherokee Indian, all of which make me the unique expression that I am.
Like most of the men in my family, and like my favorite jeans, I have become better over time. My weight has bounced around, all of my life, but seems to have found a nice range. My face has mellowed and has actually become handsome over the years. My brown hair now has a touch of gray that gives me, if not a wiser look, then a slightly more mature one, and God only knows, I could use the maturity. Also, like my favorite jeans, I am durable! Made to survive all the wear and tear the universe can dish out.
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MY PILLARS
Today I wandered onto the Oral Cancer Foundations website. A lot of great info is available there, until you read the mortality rates: 27,000 people are diagnosed with some sort of oral cancer each year, and only half of those are alive at the end of five years (the most important milestone for cancer survivors). Those are pretty heavy odds, you might be thinking. The numbers made me mad. Screw you, I thought.
But then I wondered, is this a form of denial? Faith? Am I crazy? It’s at times like these that I am truly grateful to be the poster child for attention deficit disorder (ADD). In a day or so, I won’t really remember the statistics and will again be focused on my recovery. I prefer to focus on the personal pillars of my health. These include:
Faith: Get those prayers going. Faith makes us healthy even before any of us can see the physical proof and is one of the strongest medicines in the universe. Faith is our connection to God. It allows us to see the world removed from its physical bonds. It tells us that we are one with God. Yes, I know all of the arguments against it: Faith is for the weak. Prayer doesn’t work. I pray to win the lottery every week, and I’m still working at a 9- 5 job, blah, blah, blah. I think of wishes as prayers, and over the years, lots of mine have been answered—especially when I backed them with action.
Fantasy: Fantasy is my ability to envision a future. Fantasy works hand in hand with faith. It helps me imagine better tomorrows: a world without cancer, a life filled with happiness. Fantasizing helps me pass time I could have spent worrying in a more pleasurable, uplifting way. I can’t tell you how many times I’ve been interviewed by Oprah or Ellen on my way to work! Thank God for hands-free phones, because people no longer freak out when they see someone talking to himself in the car anymore.
Attention Deficit Disorder: My ADD helps me quickly dust my hands of any negative information I’ve been given. It allows me to let faith and fantasy take their rightful place, so I can put my energy into my healing. Maybe my outlook is simplistic and I’m failing to take statistics into account, but I say there’s no way I won’t be here in five years. I have faith in the future, and you’d better believe I’ll be around to live it out!
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“IF IT’S NOT ONE THING, IT’S ANOTHER”
I love that line. It never fails to make me think of Gildna Radner and one of my favorite Saturday Night Live characters, Rosanne Rosanna Danna. Roseanne’s words are appropriate for my cancer battle: when you’re in the process of healing, it’s never just “one thing!”
At the start of this journey, the tumor on my tongue was the cause of my pain. Then, my big concern was the fact I had to take time off from work. Then, my focus was on trying to figure out who I was when I wasn’t working, since work was always a big part of my identity. Then, my focus switched to my surgery and preparations for that. By the time I was in pre-op, I’d forgotten all about the tumor, because I was about to have my neck sliced open wide enough for someone’s hands to reach into my mouth!
“Those of us intent on surviving cancer often put a brave face forward. For some, this is a ‘fake it till you make it’ strategy, for others they know that’ll be okey eventually”
Post-surgery, I began waking up to morphine-induced hallucinations. These took up a lot of time of their own. The feeding tube was a beast, right from the start. It was sewn into my nose, causing me nightmares of being dragged along by a huge hook. Then, my concern switched to my trachea tube, which always needed suction as my immune system worked to get it out of my body. Then, there was the war of the nurses: the hovering nurses who would not let me sleep, and the nurses who wouldn’t come even when I called them.
Once my trach and feeding tube were finally removed, my focus turned to my cast. Today that’s the thing that’s bugging me, along with residue from the trachea tube removal. It turns out that doctors don’t bother to stitch up the incision, they just let the skin grow back together on its own, somewhere down the road. Until it does, I guess I have a “blow hole.”
I have to admit that my “If it’s not one thing, it’s another” philosophy started long before the cancer. Always restless, never satisfied, I was one of those people who believed they appreciated beauty, while, in fact, I was missing it all around me. How amazing the sun feels on the back of my neck after I’ve being cooped up for so long. How cute my dogs are, curled up on my legs while I type. Before my diagnosis, I scarcely noticed the dappled light of the huge tree in our front yard. I failed to recognize how amazing the body is.
From here on out, it’s up to me not only to seek out beauty in the moment, but to rejoice in that moment. And though I love to bitch and complain at the end of a long day, it recently hit me: how amazing would it be if I felt peaceful at the end of a long day, instead?
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“MAMA SAID THAT THERE’D BE DAYS LIKE THIS…”
One of the risks of undegoing my surgery was the possibility that a nerve controlling muscle movement in my face may be severed. It could distort your smile, my doctor warned.
So after my surgery, I checked to see how my lip was moving, and decided that all was fine. However, in the weeks that followed, I came to realize I had no feeling from approximately the bottom of my ear to just before the right side of my chin. My doctors say this could be:
a. permanent
b. temporary swelling that blocked the nerve, subsiding over time
c. unlikely to heal for years, as the nerves work to rewire themselves and restore feeling to my face
This morning, while brushing my teeth, I realized that even though my lower lip has most of its mobility, I can no longer form an “O” with my mouth. My lower lip will go up but not down. Great. I’m going to have a lopsided smile. Ran, calm down, I told myself. Think about the people who have it so much worse than you. Think about the guy you always see when you go to the radiologist who had both legs amputated. I bet he would be more than happy to trade places with you.
My shallow side has got me wondering: would other people, faced with adversity, willingly change places with someone else if it meant giving up what they had learned? Would Steven Hawking trade places with a hot guy who has a 75 IQ, just to get laid? And is it shallow of me to want the smile I was born with?
WHEN THE FEAR CREEPS IN
Those of us intent on surviving cancer often put a brave face forward. For some, this is a “ fake it till you make it” strategy. For others, they know that’ll be okay eventually. Survivors know that their hope and faith keep them alive. Cancer treatment can be brutal, but you must walk forward to your treatment room as if it’s nothing important. Killing cells. Fusing tissue. It’s nothing. We can handle it. We are survivors—until the fear creeps in.
There is virtually no human body made to withstand the effects of radiation. Treatments such as acupuncture can help alleviate the side effects, but my acupuncturist has told me she’s never seen anyone go through radiation without some ill effects.
I have another 18 days of treatments yet to undergo, with another round of chemo scheduled to boost the radiation. Fear has crept in. I know I will survive this— but do I really want to?
My answer is yes. Pain is a small price to pay for love and for life. In a year I will remember the treatments and the blisters, but I will not remember the level of pain I experience now. I will remember the people who stood by me, each sending me energy to get through this. Friends who force me to eat, even when the experience hurts so much I want to throw the bowl of soup across the room.
Love is what I will remember and take from this experience. The pain will be a distant memory. Of course that is then, and this is now. Right now I am in the worst pain of this entire process. Yet I still have to eat, exercise and meditate to keep my strength up, even though I don’t feel like it. And I need to talk. The part of our minds that tells us that we will be okay, that we will survive this is the same part of our mind that allows us to rise above the pain. In spite of my pain, I continue to be grateful. I am surviving. In less than four weeks, the treatments will come to an end.
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OH, THE PAIN OF IT ALL!
Just three more sessions to go. I’m so burnt I can barely move my head. My tongue is so swollen that I can hardly speak. Sores in my mouth prevent me from drinking water without a great deal of prep. I haven’t taken a painkiller during this entire experience and now I find myself wanting something strong! I feel pitiful and weak and it sucks.
Today, I understand why doctors don’t tell you everything the treatment process entails. Who in their right mind would allow themselves to be tormented? If I could do this all over again, there is no way I would agree to radiation. I would rather follow a careful diet and work for the best result possible. But ask me again, in five years—when I am cancer free—if this was worth it, and I may sing a different song.
LET THE LIGHT IN
Two weeks ago, I finished my chemotherapy and radiation, and announced to the world that I was cancer free, and ready to start healing. Afterwards, I slept for almost three days. Ken woke me up for meals, and then let me go back to sleep. I felt as if someone had siphoned my tank in the middle of the night and left me with nothing.
I continue to heal more every day. I’ve watched every day as the skin on my donor tongue sheds and reveals new skin, and swelling reduced. By Friday of last week I was starting to speak without pain, although there is much speech therapy in my future.
When God closes a door he opens a window, but lately I’ve kept my drapes drawn. I feel stuck. I want to make changes to my life in order to live happily, but feel pressure to rejoin the world. I look forward to going back to work, but will never seek my identity through my occupation again. A job is merely a means to make a living. I want to start a more disciplined spiritual practice.
Recently, while sitting in my support group, I realized that I’m not special because I got cancer. I’m just one of millions who’ve had to face it. So here I am—grateful that I don’t have to do this on my own. I have so many amazing people around me to cheer me on. Some are survivors and some are just amazing people who inspire me every day. I am also grateful for Ken and for all of my family, who have made this journey as easy as it could possibly be. Now on to my first prescription for healing myself: open the drapes, and let the light in!
Ran Michels
oralcancerfoundation.org
