This text is my story of living with carcinoid
tumors. It is not intended to be used as a medical
reference. Please consult with your physician and/or
oncologist if you have any of these symptoms.
I am not a doctor…just an irreverent dude.
“Keep your friends close and
your toilet paper closer.”
– Sun Tzu
(This variation on a Sun Tzu classic
quote is what I imagine the Chinese
strategist would say if he was battling
carcinoid tumors or Crohn’s Disease.)
If I had been looking for Cloud 9, it might have slipped right by me. After surviving two surgeries for carcinoid tumors, a couple misdiagnoses, and the development of a hypersensitive anxiety for lavatory locations, you would think I’d always be on the look out for a higher plain of existence, but Cloud 9 nearly got away.
My sister dispatched me on a knight’s errand: pick up the pizza for her daughter’s birthday party. Short of gifts and the birthday girl herself, pizza was arguably the most important component of the soirée. In my haste to carryout and deliver, I drove past the strip mall that harbored the pizza joint. Hey, all strip malls look the same to me! Horrified that this oversight might delay my niece’s party, I looked for a quick remedy, but the potential adverse effect of the concrete median on my car’s alignment precluded any immediate solution.
Law enforcement officials assure me that concrete medians rank high in efficiency at catching drunk drivers. Some inebriates live out their Evel Knievel fantasies and attempt to ‘jump’ tall medians.
This typically leads to a high-centered vehicle and the drunk driver’s subsequent arrest. I was behind schedule, but I wasn’t feeling adventurous enough to attempt an imitation of the Snake River Jump over a concrete median, even if it was only six inches tall and a couple feet wide. Okay, fine, it was nothing more than a small curb section, but I wasn’t taking any chances! So I drove a few blocks, pulled into a convenience store to turn around, and there it was, alongside the road, in a trash-scattered field: Cloud 9.
If you need proof, look at this book’s cover. Glorious, eh? We are presented with opportunities on this planet, and all too often we neglect to pause and appreciate those rare instances when time stops and we see the world for the wonderful and ironic place it is. Not that day.
I wanted to yell “First!” but a thought lingered in my brain, surely I wasn’t the first to arrive at this newfound utopia? So I found my way back to the pizza parlor and picked up the pies for the princess’s cake day. After the party was over, I returned and documented my discovery with several photos and videos. Obviously, it was important to prove I had indeed, as they say, been there. No selfies, though. That would have been gratuitous.
Cancer patients, take heart, Cloud 9 exists! And in the little burg of Sierra Vista, Arizona, there are 43,888 souls (per the 2010 census) on the AZ/Mexico border living within driving distance of paradise on Earth. Lucky ducks!
Why do I take joy in absurd moments like this? Because I believe in humor. I also live with carcinoid tumors, which are one subset of neuroendocrine tumors. Typically they are slow-growing tumors, which begin in the digestive tract or lungs and then work their black magic and delve into the liver and/or other important organs.
One of the challenges carcinoid tumors present is that they are extremely difficult to detect and diagnose. They are also rare. I recall the surgeon who uncovered my first tumor telling me something like 95 – 98% of all carcinoid tumors go undetected because they are diagnosed as some other malady (such as Crohn’s Disease), and remain hidden until surgery reveals the little bastards. That’s how it worked for me.
Carcinoid tumors are no laughing matter. They’re serious and they can be fatal. They can also be a cause for embarrassment, because many who suffer from them have digestive issues that require diligence and acute lavatory location radar.
Carcinoid is serious, but if I were to write a TV sitcom for carcinoid, the show would be called John on the john, and it would go something like this:
INT. DOE HOUSE – THANKSGIVING DAY
In the dining room, the DOE FAMILY (Two grandparents and six children, ages 4 to 17) sits around a long table, set and ready for Thanksgiving dinner. The turkey looks divine, and all the fixings are there: stuffing, mashed potatoes, sweet potatoes, cranberries, and the weird Jell-O salad with pretzels that grandma always makes. Everything is ready for a great traditional feast.
MARY DOE, the mom, scurries around the table and pours everyone a glass of water. Mary looks at the head of the table and sees her husband, JOHN, is absent.
She looks to her youngest son, BOBBY.
Bobby, where’s your father?
He’s in the bathroom…again.
If he spends any more time on the can, we’ll need to rename the bathroom after him.
Oh, dad, hush! Bobby, ask him if he’s eating dinner with us.
Bobby pushes back from the table and walks to the adjacent living room and stands at the foot of a grand staircase leading to the second floor.
Hey dad! Are you going to eat dinner with us?
Probably not, son. Lots of important business up here.
Mom, he’s not coming down.
Mary stands at the kitchen counter and pours herself a glass of red wine, fills it to the rim.
Ask him if needs a book or anything.
Dad, do you need a book or anything?
No, I’m only halfway through Les Misérables.
But tell your mother we’re dangerously low on toilet paper!
The entire Smith family laughs in unison, except for Mary who gulps down all of her wine.
John on the john is a little cringe-worthy and slightly over the top, but it gives you a short sample of what life can be like with carcinoid. Day-to-day life with carcinoid tumors is a challenge on many different levels. There are ample symptoms to monitor, and some sufferers may have to maintain abnormally high inventories of toilet paper.
I was relieved when I first learned carcinoid was slow growing because there would be time to fight and win the battle. But the duration extends the suffering and the anxiety, and that’s what makes dealing with this damned disease so frustrating. At least for me.
There are several fine anthologies available with stories from survivors and caregivers. Just Google books about carcinoid and you’ll find them. This book is written in a similar fashion, except I will be offering little tidbits to carcinoid patients and their caregivers along the way. When I read the stories of other survivors, I became interested in how the initial similarities in their stories and my saga gave way to wholly unique and new experiences. I wrote this book simply to offer some insights, humor, and hopefully a little bit of advice to others, and in a way, I’m writing it for the benefit of my friends and family.
Patience and resilience are the two qualities carcinoid patients need to hone. Obviously, those traits are also useful in everyday life. Carcinoid is such a different critter. It wears at you and tears you down, and then it decides to ignore you for weeks, months, or even years. Then one day you’re visiting your oncologist and those little spots have returned on your scans. All this after you’ve been diagnosed, which for many carcinoid patients was a lengthy, painful process akin to crawling through an elaborate maze and finding the exit only to discover you’re at the entrance of another, equally challenging labyrinth.
Let’s face it: it’s frustrating to be misdiagnosed. I was. Repeatedly. During the discovery process, I would become agitated when the first and second opinions didn’t jive with each other. If only the opinions could get in the octagon and duke it out – with the truth winning. It’s never simple, and one is left with the feeling you may never know what you have. Once it was determined that I had carcinoid, and I understood how cagy the little bastards could be, I was less testy and more forgiving of my doctors.
As of May 2015, cancer.net states that 12,000 people in the United States are diagnosed with carcinoid tumors each year, which puts the odds of being diagnosed with carcinoid tumors at about 1 in 26,575. Breast cancer, unfortunately, affects 1 out of 8 women. Those are dramatically different odds, and they provide a glimpse into how difficult it is for carcinoid patients. Carcinoid is rare and subsequently there are fewer examples, fewer research dollars, and less public awareness.
My heart goes out to all cancer patients in the world; I just wish there was more specific information about carcinoid. While much is known, that information feels very generic to me, and I wonder if other carcinoid patients feel the same way.
Yes, carcinoid tumors are rare, and the oncologists and other specialists who are fighting this disease – and I believe they are right there in the trenches with the patients – are working hard to learn more about how it affects our bodies and minds. I have nothing but sympathy for the nurses, doctors, and surgeons who have assisted me. Mainly because I’m a pain in the ass patient. But I only have to deal with my problems; they have to deal with multiple carcinoid patients and caregivers.
Carcinoid is like a ninja. It just hides out until it’s discovered. Then you and your doctors do all you can to destroy it, and if you’re really lucky it goes away. For many patients, it just keeps coming back. Just remember: resilience and patience. Pace yourself and you’ll be much stronger in the long run, and this will be a long run.
If you haven’t already guessed, I advocate for humor and I believe wholeheartedly in irreverence. Laughing at any situation is in my blood. Carcinoid hasn’t changed that, and my family and friends often think I take this all too lightly and don’t treat it with the seriousness it deserves. Thoughts of carcinoid, cancer, and mortality are on my mind as soon as I wake up and throughout the day. I use humor to put those issues in their place.
My journey to find Cloud 9 has been an eventful one. Throughout this book, I offer tips on how to find the backroad to Cloud 9, with the hope that maybe some of the information I pass along will make your journey easier for you. My road has been slightly perilous – some of that is my own doing, and some of it has been bad luck with a smattering of ignorance thrown into the mix.
So, how did I find Cloud 9?