In August of 1999, I woke in a pleasantly drowsy, doped haze after an endoscopy.  I was looking at an earnest young doctor through fuzz who said I had esophageal cancer and that 95% who get his cancer are dead in 3-5 years.  If I'd had my wits, I'd have thanked him for sharing.  Rude awakening, that.

 

    It didn't make sense to me, as I'd long held the theory that depressives were less likely to get cancer than anxious types, and had rarely seen this notion contradicted. (Link)  I would come to learn that esophageal cancer (hereafter referred to as EC) was a different Beast, and that life had me more tied up in anxious knots inside than I knew.

 

    The death of my difficult mother in February of that year had made it possible for me to retire early from a job which was taking a hidden toll on my robust constitution.  I was running an addiction treatment program at an HMO under a sadistic psych chief  who hated me with a smile on his face.  He'd been undercutting my efforts to provide meaningful treatment at every turn for years, and I'd been burying my rage at him with fake smiles of my own to keep my job.  This toxic interpersonal juggernaut was creating the constricted internal environment cancer cells thrive in, but I didn't know it at the time.

 

    While this was going on, I was also running a private practice on top of the full time job to pay my mortgage. To make sure I'd never get sick and abandon my patients or colleagues, I'd down ten grams of vitamin C with a glass of grapefruit juice and a banana every morning, figuring the banana would take care of the acid in my stomach.  I'd have a Diet Coke at lunch and then down a couple of Excedrin afterwards to not be drowsy with my afternoon patients.  Then I'd take a couple more to perk up to be "on" for the 5 o'clock class I taught for the addicts and then proceed back to my home office alert enough to get through my private patients till 8 or 9.  (It's worth noting that in Europe, you can only buy about 10 Excedrin type ATC analgesics per package, and each is tightly wrapped in foil.  No 100 pill bottles over there!)

 

    Back then, gastric reflux (GERD) was still acid indigestion--to both the public and many internists.   There were no proton pump inhibitor drugs which block acid production in the stomach like Nexium or Protonix or Prilosec.  Docs bored with your symptoms would send you home with Pepcid, if anything at all.  EC was massively under-diagnosed at the time, and the reason it was so deadly was that by the time you had any symptoms, it was often too late.  By the time I realized something was really wrong, I was throwing food up in the kitchen sink after a few bites of a delicious meal because it couldn't get past the tumor I'd thought was some kind of hernia.  So imagine my surprise at the young doctor's news.

 

    The treatment for EC involves a combo of chemo and/or radiation and/or surgical removal of the esophagus--a draconian procedure where they cut out the esophagus and stitch your stomach to the upper stump, and you live the rest of your life worrying about sleeping positions, what you can or can't eat, whether you'll get unexpected runs, ensconced in a ghastly permanent fixation on the fragility of your body.  Experts argue over the importance of the surgery, depending on what stage your cancer is. There was considerable encouragement (or pressure, depending on your point of view) in the community of EC patients I joined online to have this surgery as a preventive measure against recurrence, whether or not one got remission from chemo and radiation, as recurrence is a certain death knell.  

 

    For most cancer patients, diagnosis brings a concerned avalanche of input on treatment approaches:  your oncologist presents the western medical treatment plan;  if you're in an urban area filled with practitioners of holistic medicine, you get an overwhelming array of "alternative medicine" input on your particular illness.  Some friends bring juicers so you can drink vast quantities of carrot juice.  Others lovingly besiege you with articles to read on everything from green tea to new studies showing Laitrelle, the almond pit essence, really does work. Desperation spawns openness to anything when you're facing death.    

 

     I went to see a famous local Japanese acupuncturist named Miki Shima.  Dr. Miki calls himself a "fixer" and he knows as much about western medicine as eastern;  he's also treated hundreds of cancer patients.  I walked in with what I thought was a pretty obscure diagnosis and was met with Miki's matter-of-fact familiarity with EC.  At the time, it was the leading cause of death in Japan, and there'd been research for years in Asia on its treatment.  And, he'd treated many patients with EC who were still alive years out from diagnosis.  When I told him about my reluctance to have the surgery, he nodded and went to get a book.  It was one of those huge tomes of detailed medical drawings in fine colored pencil, showing different organ systems on each page.  He opened it to the lymph system and my jaw dropped as I stared at the grim beauty of the drawing.  There were literally thousands of those little suckers everywhere--lymph nodes big and small and tiny and miniscule, and my intuitive reluctance to have anyone cut into that mess of nodules strengthened.  Miki put me on a regimen of high powered herbal formulas tested in double blind studies in China, and encouraged me to proceed with chemo and radiation.

 

    So, along with not wanting to live a sordid post-surgical life without an esophagus, I didn't like the idea of cutting into the body's Grand Central Lymph Station of millions of nodes, where errant cancer cells left behind after chemo might get inadvertently nicked loose into the system to take up residence elsewhere as a metastases later on;  and mets are nearly always fatal.   Surgeons feel confident that pre-surgical chemo eliminates this possibility.  What if I don't have it removed and I get a recurrence?

 

    This sort of decision smacks you into the nub of life:  how do I want to live?  As a single woman without spouse or children, I had the luxury of deciding this for just me, without having to worry about the effects of the decision on children.  My friends would be sad and mad if I died, but their love for me would carry them through.  During my intensive, simultaneous chemo and radiation treatment,  between September and November of 1999, I pondered these questions.

 

        A universal response to cancer diagnosis is terror of being out of control.  Every person responds differently to this dread:  some withdraw into collapsed denial, rejecting loved ones' efforts to guide and help them;  some go into passive, obsessive avoidance, so shamed by being out of control they don't want to make a decision and get lost taking too much time considering alternatives;  some aggressively engage docs in argumentative control battles;  and some, like me, go into intellectual research overdrive, spending hours online learning every possible factor, variable and outcome known on the subject, as if knowledge was power and could wrest one's control back from the edge of the helpless truth.  But The Beast, as we called EC, just keeps on being there, and the only control you have is making risky decisions with no predictable result.  You're stuck with the choice to hold grace while bearing whatever consequence ensues.  Or not.

 

    As one who spent most years until Prozac being a good sport about enduring life while secretly wishing I was dead, I wasn't afraid of dying.  And being an indulgent sort, I had all manner of bad habits I thoroughly enjoyed, and, to the exasperation of my loved ones, had very little interest in changing.  When you've been to hell and back again, you don't sweat the small stuff.  I believed then, as I do now, that the negative physiological consequences of endless self-punishment over anxious, disappointing efforts at self-discipline were as bad or worse than the effects of the bad thing itself I was trying to quit or deny myself.  I don't claim this is true for everybody, and I'm not especially proud of this view, but I'm at peace with it, for better and worse.

 

    Somewhere along the line, while waiting for results of my chemo and radiation treatment, I got sick of researching gruesome esophagectomies and moved this manic energy into pleasurable research   about traveling Europe.  Something magical happened.  The dark, constrained and frantic mood the EC research engendered was replaced with bubbling excitement in fantasies of places I wanted to see.  Websites with scientific studies were replaced with pictures of ancient quaint and colorful  villages and hotels and B&B's.  Furrowed brows were replaced with aaahhh's and ooohhh's.  The clutch in my gut was letting go. This felt good. This had to be right.  If I had surgery, I'd never go to Europe.  I decided if I only had a couple of years to live, I'd want to live them in joy and love and other expansive emotions which beauty stirs in my soul;  feelings my heart and brain know are therapeutic.

 

    The blessed news finally came in February of 2000 that I was in remission.  My ultimate choice to decline surgery came when a lifelong friend gave me a sum of money and said, "Have the surgery; go to Europe; do whatever you want".  I sobbed through my grateful blubbering, "That's a no-brainer!", and we laughed and laughed.

 

    I never looked back.  I left on 14 March 2000 for my six month solo Europe tour.

 

    The illness was in the end a mixed blessing which opened a door to the grandest experience of my lifetime.  My cancer became a catalyst for intimate conversations with strangers.  It spawned awkward moments of being stared at with shock or touched with knowing compassion.  It made me skinny for the first time in my mesomorph life, so I could enjoy buying and wearing clothes for the trip.  It also made me bald, caused a moderately severe hearing loss with tinitus, and forced me to contend with ongoing fatigue, enforced menopause and attendant mood swings as aftereffects of chemotherapy, many of which remain to this day.  It forced me to lean on friends when tired, and get over my stupid aversion to asking for help.  My illness opened my heart to spiritual joys of awe and wonder I'd never had as a child, in my fiftieth year, while beholding the colors and beauty of Europe.  All in all, I am grateful, and, praise be, still here to tell the tale.