Let's Radiate Don

So, yesterday was “Black Wednesday” – the day I spend twelve hours at the Day Hospital at USC getting seven or eight drugs, fluids and poisons shoved into my body and as you can probably imagine… Boy, what a treat that is.

Since the near death experience of last month, my wife will only leave my side if someone pulls a fire alarm. At which point her natural survival instincts kick in and she runs screaming out of the room, stopping only to wish me a quick “Good Luck” and “Godspeed.”   She did seem happy to see me stumble out into the parking lot twenty minutes later, dragging a mangled IV pole and she promptly rewarded my efforts with an enthusiastic “Way to go Tiger” and a spirited pat on the ass.

Needless to say, “Black Wednesday” is not exactly a party in a box. You’re never far from remembering the reason you’re there and the gravity of the situation that lies before you. And should you happen to forget,  a quick look at the patient in the bed next to you will bring it all back home.

With twelve hours to kill, I took a couple of magazines and a book by one of my favorite writers – Larry Doyle. He’s a journalist, novelist and screenwriter that I find incredibly smart and funny. I know him a little, in that internet way that makes you feel you know people that you really don’t. We are both on a message board for screenwriters and occasionally comment on each other’s posts or PM each other.

Anyway, his latest book is a collection of essays that he has published in Esquire, The New Yorker, etc. called “Deliriously Happy: And Other Bad Thoughts.” It’s a book culling together his short essays on various topics. I figured it would be easily digestible between IV infusions. Perfect chemo reading.

They are all funny, but somewhere about hour seven into my day, I started reading one called “May We Tell You Our Specials This Evening.” Basically a commentary on the way chefs are totally pushing the boundaries of ingredients and the often elaborate descriptions there of – in a desperate attempt to make their dishes stand out in a crowd.

Anyway, I was doing fine until I hit this paragraph:

Our special soup tonight is Georgian alligator turtle, prepared and presented in its own shell. This soup is served cold and slimy, and, in the traditional manner, with the head and legs attached. We recommend that you not touch the head, as it can snap your finger clean off before you can say, “Hey, this turtle is still alive.”

Well, I lost it. Uncontrollable laughter. My wife and daughter, who had come down to relieve her Mother for lunch, wanted to hear it. So I tried to read it to them. And then I really lost it. My voice got louder and I was sputtering out the words so that no one could understand a thing I was saying, but I kept on until I got to this section:

And, finally, tonight we are offering a very special entrée that has been the subject of much debate in the kitchen. It is roast loin of Oliver, a pig that our chef has raised since infancy. Oliver was the runt in a litter of nine, and was, as you can see in this picture, bottle-fed by the chef as a young boy. Oliver grew strong and proud and was soon beating his siblings in their rutting games. Extremely smart, Oliver has thrice saved our chef from fires caused by careless smoking. However, in his latter years Oliver has grown bitter and incontinent, and just yesterday he ate the chef’s brand-new cell phone.

I was crying I was laughing so hard. Two Nurses rushed in not sure whether they were coming to revive me, or call Security. I apologized to my wife and daughter and told them I would stop and that’s when my daughter said: “No, Dad, keep reading. We can’t understand a word you’re saying, but it’s so good to hear you laugh like this again.”

And that’s when it hit me. Cancer is a disease that strikes more than one victim. Oh sure, it may reside in “my” body, but the side effects extend much further. They ripple out to family and friends, touching them in ways known and unknown. They see how the disease changes you, and it in turn – changes them in some way. Glimpses of normal, become harder and harder to catch.

I guess my daughter caught a glimpse of normal and wanted to hold on to it for as long as she could.

I hate it that what I am going through is causing the ones I love even a moment of fear or hardship. And living with that knowledge is a pain far greater than anything this disease does to ravage my body.

But for ten minutes yesterday that all went away. My gratitude goes out to Larry for bringing a desperately needed moment of laughter into one of the more desperate places on earth. The Day Hospital at the Norris Cancer Center at USC has seldom heard such a ruckus.

And they are the better for it.

As a public service I recommend you order Larry’s book: “Deliriously Happy: And Other Bad Thoughts”

http://www.amazon.com/Deliriously-Happy-Other-Bad-Thoughts/dp/0061966835/ref=sr_1_1?ie=UTF8&qid=1337278068&sr=8-1

or his award winning novel “I Love You Beth Cooper.”

http://www.amazon.com/I-Love-You-Beth-Cooper/dp/B002CM25HA/ref=sr_1_2?s=books&ie=UTF8&qid=1337278166&sr=1-2

And I assure you it’s equally as funny when the reader is not on chemotherapy.

The internet is indeed a strange and powerful thing.

My son started this blog for me almost two years ago and thrust it upon me and now when you Google my name, “cancer” is one of the first hits you get. “Talentless sitcom hack” and “suspected projectile bedwetter” are right on it’s heels, but as far as the internet is concerned I am known for cancer first and single-handedly destroying screenwriting as a profession second.

Given the reach of the internet, it is not surprising that I have become somewhat of a “go-to” guy for people with cancer questions or just random fans of cancer as an art form. So as a service to the tens of tens of people who read this blog, every once in a while I like to bundle together some of the questions I get from the interwebs and answer them for all the world to see.

Don, things are great here on the Big Island. I am loving sitting by the pool, spending your insurance money and drinking these “lavaflows” or whatever they’re called. Just wanted to check in and see how you’re doing? When I left you were curled up in a fetal position, dry heaving into the bedside table. Any change?

Love,

Your Wife Kate

PS The Sparklett’s man says hi.

Wow, great to hear from you honey. I was wondering what happened, I sent you out for stool softeners last Wednesday. But yes, all good here this week. As you know the strategy is to basically kill you with the 3 drug cocktail, then give you a few weeks to recover, then just when you start to feel like a human, they poison you again. I’ve got one more week before the day of death, so for today, I’m feeling pretty good. By the way, tell the Sparklett’s man we’re running low on water bottles. And please, hurry home. It’s not like my stools are going to soften themselves.

Rhymer, aren’t you bored? What the hell do you do all day?

Eldin Walcott, Professional Blogger, Johnson City, Tennessee

Excellent question Eldin. You see when you are on a “cancercation” like me, you try to set easily attainable daily goals. Today, I will urinate standing up. Tomorrow I will put on pants. These are small victories you can build on day by day until pretty soon you find yourself being a productive member of society, or at least as productive as the average blogger who lives in his mother’s basement and brushes his teeth with Otter Pops.

What happens when you are done with chemo? Have you tried alternative medicine? I hear they are doing amazing things with coyote urine.

Meg Fillmore, Amarillo, Texas

I guess the plan is to do another scan that will hopefully show that I am miraculously cancer-free, significantly better looking and six inches taller. If the results are less than miraculous, I guess there will be even more chemo.

I know people mean well, and not that I have anything against coyote urine personally, but as of now I am not interested in “alternative” treatments. Wacky diets, compotes, extracts, salves, ointments… I think acupuncture is as far out there as I can go and that was for neck stiffness from all the radiation and surgery… and I gotta say, it was a big help.

But for now, I am avoiding urine, even my own and sticking with actual doctors.

Don, exactly how sick are you? I’m asking for a friend.

Your Sparklett’s Man

Thank’s Hal. I’ll be fine. Now, get your ass back to LA.

For the last seven days there has been a marching band rehearsing in my stomach.

They stomp around, bumping into each other, trying to find the right cadence, but it’s total anarchy.

I’m not going to lie; this round has been a little rough. I know chemotherapy as a weight loss tool is problematic on many levels, but juice, fruit, probiotic, you can have them all, there is no cleanse like a chemo cleanse. Yesterday I am pretty sure I threw up a pepperoni pizza I ate in high school. I am a shadow of my former self. But a tiny wisp of a boy. My daughter has checked suitcases at LAX that weigh more than I do now.

Hopefully, things will be on the upswing for the next few weeks, before they dose me with the full American plan once again.

Yep, that’s it. That’s all I got for now.

You try writing cutting edge comedy with high school pizza on your pajamas.

PALOOZA – An extravagant party lasting several days, often consisting of debauchery outside the norms of everyday acceptable behavior. Side effects include: nausea, vomiting, loss of appetite, increase in sexual appetite and temporary hair loss, usually confined to when someone “snatches a bitch’s weave.”

CHEMOPALOOZA – An extravagant odyssey often lasting several days consisting of medically induced torture outside the norms of the Geneva Convention. Side effects include: nausea, vomiting, loss of appetite, sexual ambiguity, and temporary hair loss, usually confined to clumps coming out by the handful while you are applying your citrus-aloe infused crème rinse.

After last week’s chemotherapeutic debacle, we begin anew with different drugs. Taxotere and Carboplatin where kicked to the curb and off the bench came Cisplatin and 5 Fluorouracil. I know, every time I tell people what drugs I am on I feel like I am announcing pairs figure skating teams from Belarus.

It took about fourteen hours in the day hospital at USC to sufficiently poison Don. I finished a book, read two newspapers and watched an entire Dodger game. Kate on the other hand spent much of the day two feet away from me, one hand on the Nurse’s call button. She was determined I would not code on her watch. Her diligence was rewarded; my only responses to medication all day were two burps and a fart. Which of course, I promptly blamed on the Charge Nurse.

My doctor assured me that switching out the drugs was a wash, both combos have proven equally effective and as far as side effects, I was trading out total hair loss for double the toxicity.  Which is how I think they should advertise – “Cisplatin, none of the hair loss, yet twice the vomiting.”

Cisplatin is an old dear friend, I was on it for nine weeks two years ago so I am well aware of it’s demons, but 5 Fluorouracil is a new one to me. Street named 5-FU, cause “FU up” it indeed does. Fluorouracil is deemed so toxic that they put you on a pump that only infuses at a rate of about half a tablespoon an hour over four days.

My Oncologist – who is definitely warming to me – told me it was delivered via a pump that looks a lot like an iPod. Just clip it on your hip and everyone will think you’re some techie walking around with the latest smart phone. I was convinced that being on chemo this time might actually make me look cooler than I already am. Which let’s be honest, is pretty damn cool.

Trust me, it does not look like an iPod. When the pharmaceutical team came into my room yesterday to show me how to use it, they whipped out a damn baby bottle with what looked like a condom filled with poison inside. Instead of clipping smartly to my hip, they gave me a nylon fanny pack-holstering device, which I am now tethered to for the next four days.

There is nothing remotely cool about walking around with one of these. It looks like it was designed by a couple of stoners after the bong water turned. I am not kidding, it may be the biggest sexual turn off since black socks and sandals. I caught a glimpse of myself in the mirror naked, wearing only the “nylon-chemo-fanny-pack-holster” and I gotta be honest, I don’t think “I” could ever have sex with me again.

The 5 FU is not pumped into my body with a motor, but somehow through a sensor that is activated by my body temperature. As long as I stay normal, it infuses at 2cc’s an hour. If I get cold it slows down, if I overheat it speeds up. So basically if I fall asleep in a tanning bed, I will lapse into a coma… so I got that going for me. Which is nice.

As my Chemopalooza begins, who knows what gift each day will bring. As in mileage, your side effects will vary, but what I don’t understand is why all side effects are bad? Shouldn’t there accidently be great side effects too? “Cisplatin – side effects include nausea, vomiting, mouth sores, increased athletic ability, six pack abs, speaking French fluently and the sudden ability to hit a high C.”

Is that really too much to ask for?

“Breathe! Look at me! Just Breathe!” I tried but there was no air. No matter how deep into my lungs I went, I couldn’t find even the smallest pocket of air. It was like dragging a bucket through a dry well. There was nothing but sand.

I looked to the nurses on my left who all huddled around my IV, as they pushed syringes of adrenaline and Benadryl into me. Watching for any sign of reaction, praying they would get one.  

The day had started normally. Since I was going to be stuck there for five or six hours they put me in one of the beds in the back of the Day Hospital at USC. Parked me right next to the one of those old guys who thinks he’s still doing Vaudeville at the Copa.

“Nurse, you got a husband? No? You want one?”

This went on all day.

“Blood transfusion? Only if it comes in a martini glass. Three olives.”

His banter was only broken up by constant naps and periodically waking to bellow that he needed his “damn pee bottle.” Yeah, day couldn’t get any worse, right?

After two or three hours of IV fluids, and anti-nausea drugs, antibiotics and then more anti-nausea drugs, it was time for the nasty stuff.

The first chemo drug was one I was very familiar with; they put it on a slow drip for a couple of hours, no sweat. I read a magazine, drank some juice, cranberry by the way… with ice. I sipped from a straw careful not to spill because everybody knows cranberry is a bitch to get out of a white t-shirt. Kate came back from getting some lunch. We talked, I said something incredibly witty, I do that a lot. She rolled her eyes, she does that a lot and suddenly… someone kicked me in the stomach.

I turned to the nurse and asked if she just started a new drug. Her finger was still on the button. “Yes, but there’s no way you would feel that yet.” My chest tightened, I started to black out, I found myself immediately gasping for breath.

“Wait.” I managed to get out. “Something is wrong.”

I was having a severe allergic reaction to the drug. She shut it off immediately. As I turned bright red, Kate jumped over and grabbed my hand. Told me not to panic. Somebody called for a Doctor. Over Kate’s shoulder I saw all three nurses run over to the drug locker.  I heard one of them ask for the emergency code to open all the drawers. One of the other nurses took control and calmly typed in her code, grabbed what they needed and headed back to the IV stand and started calling out the drugs as they pushed them in.

I knew this was bad and that I was in real trouble. My chest was killing me, my windpipe was closing and everything was going black.

“Breathe. Look at me. Just breathe.”

Slowly the drugs kicked in, the air came back and the world stopped spinning. The nurses had acted fast and probably saved my life. My wife had somehow set aside her own overwhelming fear to keep me from panicking, knowing it would only make an already bad situation so very much worse.

It was all over in minutes. I started to shake, my wife hugged me and then I heard Vaudeville in the bed next to me…. Snoring. The man had slept through my entire near death experience.

He woke up a few minutes later and called for his pee bottle. I couldn’t help but laugh.

When faced with the seemingly insurmountable mountains in our lives we like to think of ourselves as brave explorers. Fearless warriors, who grab a spear, put on our adventure pants and face our trials and tribulations head on.

Me? I’ve always found it much simpler to just fake a nosebleed and go wait in the car.

Regardless of who we are and whatever the struggle we face – relational, personal, financial, it’s human nature to find some way to cope with adversity. I’ve known people who cope by training for marathons, going Vegan, changing careers, losing fifty pounds. The unfortunate fact is we also cope in some pretty destructive ways: And yes, “Lawyer down the hall whose practice fell apart and you had an affair with the Cheesecake Factory hostess and your wife left you so you started living in your office and wandering around the hall in your pajamas” – I’m talking to you! And put some pants on!

Three years into treatment I continue to look for ways to properly cope with this disease and all it’s side effects. I hate to run, I refuse to go vegan, and I personally don’t find the Hostess at the Cheesecake Factory all that attractive so I’ve been forced to cast a wider net.

Which leads me to acupuncture, reflexology and Battlestar Galactica.

For years various friends have been urging me to check out Chinese medicine and for years I’ve rolled my eyes. I had done some reading and talked to some “real” Doctors about it. To be honest, I can’t say any of them outright encouraged it, but some shrugged and said: “some of my patients swear by it.” After one week of zero sleep and my neck in so much pain I just wanted to cut it off – I finally gave in.

Today was my first day. I don’t know what I was expecting. Humming? Chanting? Incense? But it wasn’t like that at all. A dear sweet man. Was extremely empathetic when he heard my story… then he stuck me with needles and I bled a lot.

And for the record – reflexology hurts. I did not know that. Anyway, I have no idea if a detour into Chinese medicine is going to help, but I’m going to go for a few weeks and give it a shot.  I figure, what’s a little blood and pain amongst friends if it helps me sleep at night.

And sleep is important, because cancer raises a lot of questions. Questions you don’t want to try and answer at three o’clock in the morning. There will be plenty of time for that nine to five, because cancer leaves you with a lot of downtime. Waiting for appointments, chilling out after appointments, recovering after appointments – that’s a lot of time left alone with your thoughts. Too much time. So you look for ways to fill that time, some people read, some nap… I watch Battlestar Galactica. Now, I am not really a sci-fi guy. Never have been. But somehow retreating into the world of Adama and Starbuck, Viper pilots, Cylons and the Lords of Kobol… works for me. It’s a great escape. A novel diversion. In a very real way, Battlestar Galactica is my Cheesecake Factory hostess.

Tomorrow starts nine weeks of chemo. No place to run and hide, no way to fake a nosebleed, this is a mountain that has to be climbed. A lot of coping lies ahead.

Thank God Netflix carries all eighty-five episodes.

Today I sat at my window and watched a guy walk down the sidewalk outside my office.

Oblivious to his surroundings, head buried in his iPhone, he was emailing, texting, surfing the internet, playing “Words with Friends” – I don’t know – but whatever he was doing it had his complete and undivided attention. The man was focused. So focused he walked directly into a lamppost and almost broke his nose.

Surgery number five was overwhelmingly uneventful… right up until the biopsy came back and that’s when things got really interesting.

The surgeon didn’t like what he found and felt it foreshadowed a lot of hinky things going on in cancerland. So they pumped me full of radioactive isotopes, shoved me through a tube and while I held my breath and ducked, they shot me full of gamma rays. Or at least that’s what a PET Scan feels like.

The pictures that came back were not exactly filled with rainbows and unicorns. They showed that instead of leaving town after the last round of radiation, my cancer had decided to get the band back together and take them on the road. This time multiple spots showed up on my lungs. Not good.

Not good at all.

My Oncologist, who I now have to admit, no longer hates me, has ideas. Lots of positive ideas and hope and options. We will keep at it, maybe a clinical trial, maybe an aggressive three chemo cocktail, but at any rate we keep moving forward, totally focused on the task ahead, and I will take it the only way I know how, head up, one step at a time.

Because if I can keep doing that… at the very least? I can avoid the occasional rogue lamppost.

I had one of those generic, liberal arts educations.

Literature, film and history. Shakespeare and F. Scott Fitzgerald. Applicable to everything, good for actually nothing.

I envisioned a life surrounded by co-eds with my summers free to do as I please. Halfway through my second semester of grad school it occurred to me that marrying a co-ed and going out and getting an actual job – might be the better way to go.

The last three years has made it clear that I should have abandoned English and gotten a medical degree. The fact that I am functionally illiterate in math, science and chemistry notwithstanding – a bit of advanced medical knowledge would be coming in real handy about right now.

You see a certain base level of medical science and treatment is pretty standard. You break your leg, there’s not a lot of debate on how to treat it. You set the leg, immobilize it and give it six to eight weeks to heal. No calling in specialists, no second opinions – pretty cut and dry stuff.

Even early in my dance with cancer the treatment options were pretty standard. Cut it out, radiate it, chemo it. But then it came back time and time again and that’s when things started getting complicated.

I’ve always been uneasy with certain cancer terminology. “Don is battling cancer.” “Don’s fighting cancer.” It just conjures up images of epic struggles. In my head I see Gerard Butler in “300” or Mel Gibson in “The Patriot.” Blood stained warriors waging war with only a loincloth and a hatchet to protect them.

I wish my “battle” with cancer were that manly, but to me it’s much more like a playground skirmish. I’m at recess taking on the biggest bully in third grade. There’s no epic struggle between good and evil just a lot of slapping and rolling around in the dirt, a few tears and screaming for Teacher Debbie to “get this guy off me.”

So even as surgery number five recedes in my rear view mirror more questions arise. There will be extensive pathology and more tests, scans will be poured over and studied. My doctors will suggest, debate and even argue the various options and then they will turn to me and say: “But of course it’s all up to you.”

Now I know the 70’s and 80’s brought about a revolution in “patient rights.” We began to take control of our own care. Stepping up and deciding for ourselves how we would be treated. But I gotta tell you when a combined seventy-five years of advanced medical science looks at me and says: “But of course, it’s all up to you.” It’s all I can do not to scream: “So, the brilliant medical mind we’re depending on here… is ME?”

I want to remind them that I’m an idiot. Oh sure, if they wanted to discuss the novels of F. Scott Fitzgerald or debate the second act turning point in the film they saw last night -  I’m the guy. But people – I write bird poop jokes for a living.

But decisions will get made, and we will charge ahead, feeling our way somehow.

I just hope Teacher Debbie gets here soon and she better damn well be carrying a fistful of band-aids.

“And so we beat on, boats against the current, borne back ceaselessly into the past.”

More neck surgery tomorrow.

My last tour through radiation never quite healed and I developed a lovely little infection, which is apparently the ideal time to bring in sharp knives.

You know you have spent way too much time in the surgical wing when the admitting clerk sees you walk in the door and says: “Hey, I know you.”

Hopefully this will be a low-key affair, but who knows? Maybe something blog worthy will happen, like I’ll wake up with a belly button for an adam’s apple.  Damn, the comedy I could spin out of that.

Finger’s crossed.

It’s not that I’m an unkind person.  I guess I just never saw the “up-side” to being… overtly friendly.

We have covered the vagaries of my personality before so I won’t bore you with them again, but let’s just say that if you sit next to me on an airplane, I will help you with your bag, pass your trash to the Flight Attendant, even let you read my magazine if you ask, but there is a 99% chance that I will never speak to you until spoken to.

Maybe that makes me a jerk, or a misanthrope, or maybe just a guy who listened way too closely when his momma told him not to talk to strangers, but it is just the way I am wired. Which is why, I am, at various times, awed, inspired or horrified at people who are wired differently.

Margaret walked into the crowded “blood room” mid-sentence.

Commenting on the weather, the new furniture and that cute doctor “what’s his name” the woman would not stop talking. I did what I normally do when faced with an obviously crazy person… avoid eye contact at all costs and get very busy thumbing imaginary text messages on my Blackberry.

You see the “blood room” is Blood Draw, which is the one common ground all the cancer patients at USC share. All doctors lean on blood work for their clues, their  guides, their road maps to navigate the twists and turns of treatment and this is where we all come to get stuck.

Breast cancer patients, head and neck, prostate, leukemia… we all sit side by side here. Some are ten years into their battle with cancer, other’s ten minutes. So it can be a tense room.  You never know where people are in their journey; just that you can damn well be sure they wish it had never led them here.

Margaret elected herself “Blood Draw Den Mother” and started to work the room. Many joined right in, sharing basic info about themselves… lymphoma-three years. Breast cancer, double mastectomy. Another woman had endured two bone marrow transplants and to quote her… “And I ain’t got no kids, so I did that shit myself.”

I sat, listening, but not looking, head down, figuring she was working her way over to me. When suddenly… after fifteen minutes of straight chatter, Margaret clammed up. Shocked at this surprising turn of events, I looked up and saw she was leaning over, her hand on the knee of a small frail looking woman I had barely noticed on the way in. She was sick, maybe 100 pounds, wearing a really obvious jet black wig.

Suddenly, Margaret sat back down, whipped off her own, short, sassy blonde wig, rubbed her hand across her stubbly bald head and yelled out – “It itches like heck don’t it.”

A woman across the room, laughed and pulled off her hat, showcasing her own bald head and finally the frail little woman slide her black wig off and smiled like someone had just given her a huge gift. The other women cheered, the men clapped politely and suddenly it wasn’t a room full of strangers anymore.

Maybe being overtly friendly does have an “up-side.” You just have to be willing to look up from your Blackberry to see it.