Nigel Tufnel: “It really puts perspective on things, though, doesn’t it?”
David St. Hubbins: “Too much, there’s too much @#$%ing perspective now.”
– From This is Spinal Tap (scene at Graceland)
I took an aptly named sleeping aid called Ambien. I went to sleep, settling me into an ambient state of mind and body. My steady cocktail of Dilaudid (Elvis’s drug of choice) for pain, steroids for reducing swelling from surgery and Keppra for controlling potential seizures had created a sleepless monster out of me. I love the descriptor for Keppra, also known as levetiracetam: used for “decreasing abnormal excitement in the brain.” Abnormal excitement?! What, pray tell would that be? Fortunately I am now tapering the use of the pain-killer and steroids until the next surgery, except for the anti-seizure meds which I will continue. I had to take it. I. Had. To. Sleep.
My brain, overwhelmed with the download of several terabytes of new information and a language I knew not how to speak, was keeping me awake along with the emotional torrent from stress, fear, sadness and anticipation. My body was exploding with more than normal energy but because of the delicate nature of having your head sliced, burr-holed, repaired with titanium screws and plates and finally sealed with medical-grade caulk called Durabond. (“weather sealed for your protection!”) I have been unable to participate in normal strenuous physical activity and have been cautious about having too much blood flow too fast to or from my brain (written with a slight grin).
Walks and a careful wade in the pool or swimming hole have been the most I could muster safely. I was pleased to hear that the best outcome after radiation is the level of physical activity a patient engages in during and after treatment. As I noted in one of my earlier posts, there is something I love, for lack of a better word, about the excerpt from the surgical report which reads ” the bone on back table was prepared with Leibinger-set titanium plates and screws. This was used to affix patient’s bone flap to his skull.” Cool, I think. Wow. How very…cool.
I had taken Ambien once before. An old and dear high school friend I was visiting in Seattle had offered it as a salve for the red-eye I was about to take back to New England. He warned me “you won’t remember anything, so be careful.” How true. I had to change planes in Chicago around 3 am. To this day, I do not remember waking up, rolling my carry-on off the plane, getting to the next gate or settling into the connecting flight. Apparently among the things that can happen under the influence of Ambien include walking, eating, emailing, texting and other “activities,” with no recognition later of said acts. That’s a big “hello how are ya?” isn’t it?
Knowing that the best outcome relied on sufficient, quality rest, I waved the white flag of surrender to modern pharma as I was never one to enjoy taking pills of any kind save for those sickly-sweet but yummy flavored Flintstone vitamins. (Yabba Dabba Doo) Sure the sleeping-pill biz is an incredible multi-billion dollar industry and I have dined with, at the late Lever House in NYC, the very funny, nattily dressed Englishman David Southwell, owner of Sepracor, maker of Lunesta on one my fundraising junkets. He’s just a savvy businessman doing business, quite well, I might add. (He is also very philanthropic)
Even after a lifetime of asthma, I still resist taking in the daily recommended inhalation of Advair 250 to which I owe a relatively stable state of lung function after years of feeling as if I was breathing through a coffee-stirrer. Asthma, pun intended, sucks. After too many visits to the ER unable to breathe, I leave behind a tattered laundry list of medications and alternative remedies spinning like a cyclonic, whirling dervish of trash off a city sidewalk.
Theo-Dur, Prednisone, Azmacort, Singulair, all stored in pill form or contained, aerosolized, within a colorful delivery-system, a contraption designed, apparently, by some stoner/engineer/artist with a CAD machine as if to mimic, in plastic pastels, the wood and glass smoking paraphernalia found at your local head shop. “Duuuude, nice…i-n-h-a-l-e-r!”
Of the more memorable ER visits, including those in Sedona, Arizona, Keene and Littleton, New Hampshire and Philadelphia, Pennsylvania, the midnight run to the Fletcher-Allen Hospital in Burlington, Vermont was perhaps the most Woody-Allen-esque. (Why does so much of my life seem Woody Allenesque?) But, before I move on, if you will stay with me, let me give you some foreground.
It was just after midnight, January 1st, 1990, and I had been seeing an artist-woman fifteen years my senior or so. I don’t really remember her age, she was what would now be considered a “Cougar.” I was 23, she probably 40. She looked and dressed like a mash-up between Joni Mitchell and Rickie Lee Jones. She was fun to be with, on a post-divorce tear and completely insane. But I was just out of college and living near a terrific city, working multiple jobs and we were simply having a pleasant time…I think we went to the now defunct “The Front” or “Nectar’s” (where I had seen an as yet relatively unknown band called Phish several times) until we went to her apartment in downtown Burlington. Cats, or rather their dander, are the death of me and, being smitten with her, chose to ignore this known danger (among other signs I ignored, but nevermind). Almost immediately, her feline friends sent me into a full-blown asthma emergency. I was sweating profusely, red-faced as I gasped for air. My lungs were in high gear and my throat was closing. I could not breathe. We raced up the hill to the hospital. Sitting next to me in the hospital bed, stroking what was then a fuller mane of hair on my head, Rebecca was asked by the doctor how old her son was. “Oh. He’s not my son. He’s my boyfriend.” For a variety of reasons the romance did not last.
During this “post-graduate year” in which I declined a teaching position and applied to the Peace Corps, leaving me in a state of career limbo, much to my parent’s chagrin, I was a part–time ski bum at Smuggler’s Notch, which got very old very quickly. When I wasn’t working or skiing, I was busy hiking, fishing, and bicycling on my own, hanging with happy-go-lucky but not-that-motivated kids from Johnson State College or riding the chair lifts with sad, alcoholic, divorced guys who were the age I am now (44) who could only talk about moguls, house-painting jobs they had or wanted, the careers they used to have and the ski bunnies they had “had.” It quickly became depressing. They skied for free as “Ambassadors of the Mountain” or with the ski patrol. But I loved hanging at the Plum and Main and the Vermont Studio School in Johnson, Jana’s Cupboard and The Brewski in Jeffersonville and worked waiting tables at Smuggler’s as well as Banditos Mexican Café with a cast of characters worthy of a reality show and owner who snorted his profits up his nose. Yikes.
When the snow storms were bad, if I was still at work at Smuggler’s, rather than drive back to Jericho where I lived, I would simply drive my faded blue, rusty, completely un-sexy, bread-box of a Toyota SR5 4WD wagon, (those were ugly cars) covered with the requisite political bumper stickers, up the Mountain Road of Route 108 as far as it could go before the snow blocked passage. The sound of crusty ice, rock and snow scraping the undercarriage as I barreled up the climb signaled my stop. I would recline the seats to make a bed, unfurl my sub-zero, down, midnight blue North Face sleeping bag, with that sleeping bag smell of wood smoke and faint mildew, pop Neil Young (Everybody Knows This is Nowhere, Zuma or Decade) in my “boom-box,” and settle in for the night with a journal and a Catamount ale. Ensconced in my little world, with the moon bouncing light off the milky ice-covered fields and road, I was in bliss.
Not even a built-in cassette player did this car have. I had arrived in Vermont with my beloved emerald-green VW Scirocco, a graduation present purchased used in Upstate New York for $2,000. It had a great stereo, sunroof and was a two-door sporty thing. It was the first time, as I negotiated with the seller, an old farmer who had a used-car business on the side, I had heard of the phrase I will not forget. As I offered a lower price, he smiled and exclaimed with no hint of meanness “Well, buddy, don’t try to Jew me down, it’s a fair price.” I think I was too bewildered by the comment to realize just what he was saying and realizing the guy was an idiot anyway, I bought the car. I wanted the car. Later the moment sunk in. Wow. That was really bizarre. Ick. Why? “Jew me down?” Really? I should have showed him my horns.
Scirocco means desert wind, by the way and you will be hard pressed to see many of these sports cars on the road anymore, although I believe Volkswagen may be reviving this model. My car, after only six months of ownership, met its sad demise as I slid on black ice down an embankment, rolling over softly, gracefully, down a short, frozen, grassy knoll, landing upside down in a creek-bed on my way to a small acoustic concert at The Daily Bread Bakery and Café in Richmond where I also worked part-time. Just before the accident, I had inserted a tape and hit rewind. As I crawled out of the partially submerged car, the Tailgator’s rockabilly song “Brown Eyed Girl,” with a great, fuzzy, raucous guitar intro, blared from the speakers. The engine was off but the battery still worked, at least for the moment. With the headlights piercing the steam from the boiling engine, now partially submerged in water, hissing, and the moon above, the scene, with the music as a soundtrack, was surreal. I recalled the movie version of Stephen King’s Christine. The car was still alive! Sadly, it did not survive. My Scirocco. My desert wind was still.
I was living in Jericho, Vermont on 106B Lee River Road, diagonally across from Joes’ Snack Bar (“#16 your hot dogs and fries are ready!” I could hear from my window) and writing local newsworthy bits part-time for the “The Mountain Villager – Made in the Shade of the Mountains” whose offices were in the basement of an old red mill. I got to know the ghost of Snowflake Bentley and interviewed local Vermonters of note including a wonderful artist-author Tracey Campbell Pearson and then-Governor Madeleine Kunin while watching a performance of “L’Histoire du Soldat” by Igor Stravinsky at the Inn at Essex. What an amazing, wonderful woman she was. (and is!)
I did a stint waiting tables at Chequer’s Restaurant in Richmond where the owner Forrest, a mad, crazy chef, would often cook in an apron and no pants, chasing the waitresses around with an artfully carved, phallic carrot (the largest he could find) while his sweet but beleaguered and significantly younger wife Melissa tended to running the business and resisting the temptation of drowning him in the Fry-O-Later. Ben Cohen and Jerry Greenfield were neighbors and they would often stop by for a meal. This was during the height of Ben and Jerry’s fame, before they ditched the “no employee makes any more than seven times the lowest paid person” and the Dutch conglomerate UniLever bought them out. As they sauntered in as they were want to do, they would often order, gluttonously, an entire side of the menu. Thankfully, I think they are living a much healthier lifestyle now and their arrangement with Unilever, unique at the time, has allowed for some autonomy. Ben and Jerry’s as a company has not, thankfully, lost its soul.
I was also bank teller at the now defunct Bank of Vermont, pool-cleaner with a business which seemed to serve mostly wealthy Canadians and a construction worker on the I-89 span over the Winooski River bridge. I spent the days making good money to risk my life, wearing a hard-hat, goggles and earplugs with a 200 lb drill bit pounding the concrete into the river not too far from my head – illegally I am sure. My job was to place the large chunks into a front-end loader with dust and debris swirling around me. I was tethered, rock-climber-style to some random piece of the bridge lest I fall off. (Sorry Mom!)
In one of my most memorable moments from any workplace, I had to work alongside an enormous, cue-ball-bald, construction worker with several missing teeth, wearing no shirt, adorned in what was probably an XXL pair of sweat-soaked, filthy, denim overalls and who looked like a cross between Curly from the Three Stooges and Mr. Clean but not as handsome. Not at all, in fact.
At one point he stood there, looking 8 feet tall, like an extra from a slasher-film, shouting in a southern but mysterious drawl, over the din and chaos of heavy equipment to a group of grunts, including myself: “Yuh boys! Yuh boys know where I ken geet sum pooooon-tang? Whas thu mattur w’ yuh boys? Are yur wimmen all corrrrn-fed?” And he said it again just for good measure. Louder this time, to be sure we heard him. I don’t think any of us “boys” were able to respond. It took a long time for me to fully comprehend just what he was saying. I don’t believe I had ever heard anyone use that word in a sentence (ok maybe when I was in middle school and experimenting with touching the edges of filthy words, as many kids do) nor did I at first interpret the allusion to the fact that perhaps he felt, erroneously, that all of the women of Vermont were fed corn as are our bovine population. Holy smokes, I thought, I am in the twilight zone.
Back to the dream. The Ambien. My dislike for taking medication. The visit to Houston.
Soon after the Ambien, I was carried away, flying, soaring, floating, and drifting through the air and down rivers unknown. I knew not which direction I was headed, with all of my inner navigational components set to autopilot. I was at the mercy of the medicine. The problem remains is that I am still not sure, as I write on the flight back to New England, whether any of this is real. Am I in a dream state? At the very least I want my month of August back. The planned vacation with Hannah and Libby to California with my cousin. The weekend getaway to Maine with Barb. Getting back to my wonderful job at Putney. Seeing my friends and family under different circumstances. That is all on hold as I climb out of the wormhole in which we seem to be stuck.
The Ambien did wear off this morning but my head is awash in fear of the great unknown, hope for what could be (what will be… I think I can, I think I can…I know I can, know I can!) and heretofore incomprehensible compassion for what I witnessed.
In Texas, everything is bigger: big cars, big trucks, big horns, big horns on trucks and cars, big hats, big boots, big (fake) breasts, big steaks, big highways, big universities, big oil and big medical centers. There is virtually no easy public transportation. Whereas taking a train to the Sea-Tac airport from downtown Seattle costs less than $5.00, there is really no way to get from Bush International to downtown without a $65 cab ride. It is the land of the great automobile. Alas, going to MD Anderson for a second opinion was supported by the great doctors at Dartmouth Hitchcock and was unquestionably the right thing to do.
There is an adorable joke about a Texan and a Vermonter- a Texan, with his big hat and boots, is boasting to an old Vermonter about how big things are in Texas. “You know, old man, where I come from, my land is sooo big that I can get in my car and drive all day and not reach the other end of my property! THAT’S how big Texas is.” The Vermonter, non-plussed, looks at the Texan and shares, in a humble Vermont accent, “Ayup, I used to have a car like that too!”
After arriving at University of Texas, MD Anderson Cancer Center in Houston, even now, I am not sure if I have yet awakened. Perhaps I am still under the cloudy effects of the Ambien.
MD Anderson is the largest cancer center in the world, the largest hospital in the United States and one of the leading centers of research and treatment of all cancers including mine, the rare-in-adults anaplastic ependymoma. There are over 17,000 employees. In 2010, there were nearly 24,000 hospital admissions, 1,132,338 outpatient clinic visits, procedures and treatments, 61,783 surgery hours, 538,514 diagnostic imaging procedures, 7,884,053 pathology/laboratory medicine procedures and 1009 total active clinical research protocols. With $3.3 billion in revenue in 2010, they also received nearly $550 million in research funding through grants, contracts and philanthropy. The complex resembles a small city. It is, in every way, remarkable. Mind you, I love my DHMC.
Annually, in this country of 312,000,000 people, less than 100 will have a WHO (World Health Organization) Grade III anaplastic ependymoma. Of those 100 or so, even fewer will have in the brain as often it goes to the spinal column. Looks like I won the Brain Cancer lottery. I will continue the expert treatment at Dartmouth-Hitchcock to which I owe a deep debt of gratitude. I am a lucky man. But visiting MD Anderson was a critical step in this early stage of the journey as we amass information and expert opinions.
“It was like entering a frenzied airplane terminal, except everyone there had cancer,” exclaimed Barb. We left the hotel in an enormous black van with a pair of four-feet wide Texas Longhorns affixed to the grille. It was hot. Houston has been experiencing 100-degree weather for over a week. Water mains had been cracking daily. It is hard to breathe. The place is not a zoo, but indeed like an airport terminal at its peak be it O’Hare, Kennedy or Atlanta.
Walking inside, I was overcome by yet another wave of emotion. My legs became weak (again) and I held back from breaking down. Everywhere were people either being cared for or caring for cancer-afflicted people: children, the elderly, and middle-aged. People of all colors, races, ethnicities, women in burqas, Orthodox Jews, women in saris and families in Native American dress. It was a sea of cancer. People with masks covering up cancers of the face, tongue, jaw, neck and head. Partially shaved heads, odd fixtures and contraptions. A parade of IV trees, liquids offering sustenance, remedy, stopgaps and pain relief.
I recalled the scene from Toy Story in which there is a mean, disturbed child named Sid whose toys have been mutilated, disemboweled and reconstructed into objects of horror and despair. It was the Island of Misfit Toys, with cancer. Or perhaps I was wtaching, with the various styles and patterns of aforementioned shaved heads, outtakes from Penelope Sheeris’s paeon to punk rock: The Decline of Western Civilization: The Punk Years. And there were the hundreds of internists, nurses, doctors, volunteers and staff milling about, all there for the same purpose: to help others.
Mind you I do not intend for this to be a critique. It is not. Nor am I making fun of what I saw. It was not at all grim. I would argue the opposite. It was hopeful. People were there quite literally from all over the world, at one of the best cancer centers in the world for the same reason: to get better. To buy time. To inspire. To give and to receive. But it was an enormous, undeniable, unavoidable reality check. It was a shock to the system. I had been initiated into a club to which I did not apply nor wish to become a member. And suddenly I am a member. Overnight. A tumor. A cancer. In this case, one which is incurable, for which there is little data and requires fighting the odds with every fiber of my body and soul. And I will win. There is, is with a total gross resection (full tumor removal) during craniotomy, a 60-70% chance the cancer will return based on 8-year outcomes. That is all the data they have. But this also means that 30-40% of adult ependymomas after TGR have not recurred after 8 years. The data itself is from those who have participated in the Outcomes project which is why the work of CERN is so critical.
With a sad irony, one Barb immediately recognized, the name of the hospital section we were in was called “The Aquarium” (see reference to Aleksander Hemon’s New Yorker piece). It was haunting. Walking into the cafeteria, an enormous food court, one could have everything from Asian to salad bar, Chik-Fil-A (an obscenity) to Texas-style BBQ. When you have cancer, as much as one should eat as healthfully as possible, I suppose there is also a place for guilty pleasures. I had the brisket, be damned!
We spent two days winding out way through the maze and haze of insurance protocols, living wills, scheduling and amassing even more information. A sweet woman from Jewish family services came by with mandelbrot (just like grandma’s!) A social worker called. We spent hours sorting things out with the business office. And finally, we met with Dr. Mark Gilbert, the man we came to see. He and his team were remarkable in their knowledge, care and concern. He shared that he had two primary findings and questions. 1) The need for a higher resolution MRI using a 3 Tesla rather than the usual 1.5 tesla powered MRI. Even MD Anderson, we were told, does not always use 3 tesla MRI’s. It all depends upon what is available at the time and what is needed. A better MRI will afford a better opportunity to gauge whether the white spot inside my brain is residual tumor requiring another craniotomy to complete the removal, or whether what they see is simply necrotic (dead) tissue or blood. The second critical piece was to determine whether proton or photon radiation is necessary. This morning we saw Dr. Brown, another excellent, kind, top doctor, a radiation oncologist who after studying my case, thankfully shared that he felt that photon therapy, a more generalized and widely used radiation therapy, would be appropriate given the location and nature of the cancer. Proton therapy, which is available in only 37 locations worldwide, including MD Anderson, University of Pennsylvania and Massachusetts General among the 9 in the United States, is a more precise manner of delivering radiation and promises better results, depending upon the type and location of cancer. In my case, photon therapy will work just fine so Dartmouth Hitchcock, where my friends and new family are, it will be. So 1) determine after the next MRI if surgery is needed (probably) and 2) begin, after time for healing after surgery, six weeks of radiation therapy to try to destroy what remaining cancer cells are left hiding. And then we wait and see. Forever. And ever. Amen.
At the end of our first very long and taxing day at MD, we called the hotel for our shuttle. Again a black SUV with ginormous long horns attached to the front of the car pulled up. (Barb and have decided that out next car will be a Mini-Cooper with similar gargantuan long horns attached) There was another couple returning to the same hotel in the car and they obliged when we asked if we could join them. It was clear at the outset they were together in a way only (some) couples walking through trauma can look. Close. In love. Slightly sad. And holding each other close as if protecting each other from the elements. They were perhaps five or ten years older than we, early fifties perhaps, with a warm presence, they were both survivors even if it was only she who had the cancer. They beamed love and hope. As we chatted we learned quickly that we were all part of this strange new club, the one to which we did not apply nor wish to be members. But the humanity between us was so real, so moving. They were veterans of sorts. They looked at us knowingly, lovingly. With tears welling up between us, we shared our stories.
She had an extremely rare form of breast cancer and had come from Kentucky to MD Anderson for treatment. After they did whatever they had to do with the cancer, they rented an apartment in Houston so she could undergo the requisite six weeks of radiation therapy. And now, since June, they come to MD every three weeks from Kentucky for a clinical trial which will last through November. They nodded knowingly as we told them our story.
The freight train that had crashed through our home only a few weeks ago had been on the same path as had passed through their home. They had picked up the pieces and glued them together with hope and love. By the time we arrived at the hotel we had exchanged phone numbers and were holding each other close, tears welling up between all four of us as we said our goodbyes with warm embraces. We could all barely hold it together. These sweet, dear people we had never met were now kindred spirits. We were part of a new family. We promised each other we would get together again should we find ourselves back in Houston. Or Kentucky. Or New Hampshire. Or anywhere, because now we know. We are not alone. We are not alone.