“I love sleep. My life has a tendency to fall apart when I’m awake, you know?” -Ernest Hemingway

“O bed! O bed! delicious bed!
That heaven upon earth to the weary head.”
– Thomas Hood, Miss Kilmansegg- Her Dream

When I woke up this morning my girlfriend asked me, “Did you sleep good?” I said, “No, I made a few mistakes.” – Steven Wright

Satan is real…at least when it comes to my sleep…bless those Louvin Brothers, Ira and Charlie (click for song- no video)

Sleep continues to be elusive. The so-called battle with cancer is a steady, sometimes maddening drone which hums along the background of my daily routine, sometimes quietly, lurking, and at other times a cacophonous roar and once in a while, an earthquake of the highest magnitude.

But the current dissonance of sleeplessness, akin to the industrial noise of the MRI machine, has taken center stage. Sleep is, without question, the starting point for all healing and I find myself caught off-guard by its power from the disruption and lack of it.

I never needed much sleep. Prior to “all of this” I had started to slip into a fairly healthy sleep routine without any assistance after years of on-again, off-again struggle. The impact of sleep issues affect not only you but your partner and the entire household for that matter. Even the dogs are thrown off guard. They look at me with a look that says “what the hell are you up for at this hour? Why is Mark installing weather stripping in his underwear at 4 in the morning?” There is a reason interrogation techniques involve sleep deprivation for such tactics can truly drive one mad and make one do mysterious things.

I know that if I go to bed before 11, I will be up too soon and if I head to sleep anytime after midnight, I will not get the rest I need. I seem to operate quite well on 5-6 hours of sleep. My motor always idled at a high RPM. I cherish the quiet of the early morning. The days are never long enough to do the things I need and/or love to do. Power naps of 5-20 minutes can recharge my battery for hours.

I have participated in two different sleep studies over ten years ago to address insanely loud snoring and fatigue. The average snore will emanate a sound between 60-90 decibels with the loudest snore on record attributed to 63-year old grandmother in the U.K. who operates her “nose trumpet” (a term used by my daughter Libby) at 111.6 deceibels, louder than a low-flying jet. The average conversation takes place at around 60 db while a vacuum operates at approximately 70 db.

The researchers ruled out sleep apnea but my asthma contributes to some upper-airway obstruction. They were astonished at both the decibel level of the snoring (I am unsure of the actual measurement) and my “sleep latency” period: the time between being awake and sliding into deep sleep which for me was often less than one minute, if I recall correctly. To this day I am asleep as soon as I hit the pillow.

I was issued a CPAP (continuous positive airway pressure) machine which made me look like a WWII fighter pilot, or some bizarre, kinky get-up worn by the Gimp in Pulp Fiction. It also severely disagreed with my claustrophobia. I think I sold it at a yard sale.

One doctor (NOT a Dartmouth-Hitchcock doctor) with whom I consulted and seemed a bit too eager, wanted to carve out my soft-palate, do something with my tongue and remove my uvula. “But doctor, I like my uvula!” I cried. When he leaned his face into mine and exclaimed, with some irritation, that “there are a lot of people waiting in line for this and you better act now” I raced out of the room, fully expecting to see him chasing me down the halls of the otolaryngology department, wielding a scalpel and screaming my name. I was reminded of the scene from Monty Python (I must warn you: this is graphic, not for the faint-of-heart and requires a twisted sense of humor)

Ultimately, I swore off pharmaceutical and surgical remedies and chose instead to focus on improving my mental state, diet, sleep habits and weight. The result had been, until now, a better sleep with less frequent and somewhat quieter snoring.

And yet here I am back to square one, facing an unexpected and seemingly invincible side-effect. Actually there is no “side” to this part of the illness. It surrounds me, envelops me and swallows me whole. The “sleep issue” is a Hydra and no Heracles I, it seems that each remedy is met with another problem grown anew much like the multi-headed beast. The mind fights with the body in a never-ending wrestling match and I generally disdain taking medications which make me feel “off” as I am “off” enough already.

Insomniacs of Note:

Napoleon Bonparte, Robert Burns, Charles Dickens, Alexander Dumas, Thomas Edison, Benjamin Franklin, W.C. Fields, F. Scott Fitzgerald, Judy Garland, Cary Grant, Catherine the Great, Franz Kafka, Abraham Lincoln, Amy Lowell, Groucho Marx, John Stuart Mill, Marilyn Monroe, Sir Isaac Newton, Marcel Proust, Theodore Roosevelt, William Shakespeare, Mark Twain, Margaret Thatcher

“In a New York Times interview, (Heath) Ledger told Sarah Lyall that his recently completed roles in I’m Not There and The Dark Knight had taken a toll on his ability to sleep: “Last week I probably slept an average of two hours a night. … I couldn’t stop thinking. My body was exhausted, and my mind was still going.” At that time, he told Lyall that he had taken two Ambien pills, after taking just one had not sufficed, and those left him in “a stupor, only to wake up an hour later, his mind still racing.”

“In talking with Interview magazine after his death, Ledger’s former fiancée Michelle Williams also confirmed reports the actor had experienced trouble sleeping. “For as long as I’d known him, he had bouts with insomnia. He had too much energy. His mind was turning, turning turning – always turning.”

Sleep is elusive for many. It is estimated that over 70 million americans suffer from sleep disorders and that 1 out of 3 adults will experience insomnia at some point. On the recent public stage, we know Michael Jackson struggled with the sticky tentacles of the insomnia octopus before the roof caved in as it rained an acid rain of propofol, lorazepam and midazolam. It appears that this was managed poorly by his caretakers. But also appears that he too was driven to desperate measures. Factors for insomnia include stress, fatigue and other health issues. Sleep disorders also contribute to obesity, heart disease and diabetes. The estimated annual health care costs of sleep disorders are over $16 billion annually.

Sleep is indeed a multi-billion dollar industry. I once had dinner at the now-defunct Lever House on Park Avenue with the former CEO of Sepracor, (now Sunovion) manufacturer of Lunesta, one of the top-selling prescription sleep drugs. In 2007, Sepracor reported revenues of $1.22 billion. According to a CBS news item: “At one time, Sepracor spent nearly $300 million a year advertising Lunesta — the largest ad budget on the entire planet.”

I had never taken a sleep aid before but since the surgeries and radiation treatments, sleep has been a rabid animal I have been unable to capture. The first time I took any sort of medication for sleep occurred last year when I took a red-eye from Seattle and a friend with whom I was staying, who travels extensively, suggested I take an Ambien. “Make sure you have enough sleep time as you won’t remember much, if at all, especially if you wake up. People have been known to sleep-eat, sleep drive, etc. Have fun,” he smiled.

To this day I have absolutely no recollection of how I managed to change flights in Detroit at 3 AM. I do recall waking up feeling like a jellyfish, (not that I would know what a jellyfish really feels like) drooling and that I was in a zombie-like trance. It was just like some of my lesser moments in college. And the sleep eating? That was nothing new. But since then, Ambien can’t touch me. I tried a few times and all I could muster was a maximum of four hours of sleep. Other meds leave me groggy.

In studies of cancer patients, 30 to 50% of those surveyed, compared to 15% in the general population, experience insomnia due to the physical and emotional side-effects of surgery, radiation and the mental weight of the cancer diagnosis itself.

Late night soothing mechanisms have included setting my iPhone to calming, meditative music, streaming a book on tape (preferably a boring one), white noise from a fan (which I need anyway) and a glass of warm milk with honey or chamomile tea and maybe a banana. What the body needs is serotonin levels to rise and foods like bananas do the trick. A terrific site for foods that help sleep is The Daily Meal.

Other suggestions include the seemingly obvious: avoiding alcohol and caffeine, not drinking too much anything including water prior to bedtime and avoiding late-night spicy foods. Oh, and, ahem, staying off the computer which not only awakens the brain and body further but as studies have shown, can confuse your circadian rhythm as the light from a screen is like that of the sun.

I take melatonin before bed (20 mg) which is higher than most people take, but is also part of a wider cancer-related supplemental regimen which includes tumeric (800mg), vitamin D3 (5,000mg) and fish oil (5,000mg). It has been suggested by a fellow brain cancer survivor that I also take borage seed oil (3,000mg), resveratrol (150mg), lycopene (20mg), green tea extract (1,450), milk thistle (600mg), and genistein from soy (50mg).

Additionally, my intake of cancer-fighting foods will now include more kale, a wonder green if there ever was one. I am perfecting the art of making kale chips. Shameless but earnest commercial plug: buy now famous Vermonter Bo’s swag at Eat More Kale – it’s a curious bumper sticker, a t-shirt, a global movement, a religion and is setting the world on fire. The latest news, which I hope garners Bo more business, is a ridiculous battle with junk-food chain and corporate bully Chik-Fil-A over trademark dispute. Go Bo!

Other food items on my cancer menu: mangos, salmon, salmon and more salmon, sweet potatoes, broccoli, spinach, tomatoes, tart cherries, berries of all types, garlic, apples, pineapple, pinto beans, and severely limiting if not eliminating fried foods, sugary foods, red meat and processed foods.

I have just begun my journey into complementary medicine. The doors have been swung wide and in the coming months I will delve into acupuncture and massage therapy. I have already seen an excellent naturopath. I have had one infusion of vitamins to help my body regain its balance after treatment. While it is too early to see any results, it seemed harmless enough and I approached it with a “why not try?” attitude. My doctors at DHMC were all open to alternative treatments but rightly suggested I wait until after the radiation treatments had been completed lest anything interfere.

Always open to new ideas, I have tried a few alternative therapies in the past. Some I have found to be completely and utterly devoid of reason as my cynical/skeptical side takes hold and while other forms have been very beneficial. Half the battle, I believe is in the mind, so while I may avoid some forms of alternative medicine, I pass no judgment on those for whom such therapies work, science-based or not. I have had equally positive and negative experiences with the modern medical establishment as I am sure many have had. I am fortunate to have had the expertise at Dartmouth-Hitchcock and the terrific alternatives available at Sojourns Community Health Clinic where Barb is a PT.

What I find most intriguing is how important is the messenger and the critical trust necessary between patient and physician or any health care worker. My initial irritation with some forms of alternative treatment has everything to do with some of the first people I encountered who were practitioners of various approaches. I found a few of them a bit too flaky for my taste. Then again, the aggressive doctor who wanted to perform radical surgery later proven not to work, left a bitter taste no different.

When an assigned social worker showed up the day of my cancer diagnosis to assess our situation and recommend a therapist if needed, I told her I did not want a soft-spoken, touchy-feely, “flowy” new-age “how does that make you feel” sort. I wanted someone with the proper credentials who was warm, accessible, practical, had a get-it-done attitude, was down-to-earth and had a sense of humor about life itself. So while I am not sure I need someone to talk to at this very moment, I am meeting with a therapist as a preventive measure and to ensure that this is someone I can work with if and when needed.

I have shared with my daughters many times that should they find the need to talk to someone, we will make sure this happens and that we might do the same preliminary visit for them. Their teachers, advisors and heads of schools have been right on top of checking in with them, their mom Laura and myself. Fortunately both girls are comfortable with adults, have great communication skills and are OK talking about their feelings in general but I do not not want to take this for granted and assume that they are fine. How could any of us really be fine? But we are faring well and we all try to keep the door open.

I think it beneficial to approach all treatment, be it with modern western medicine, centuries-old eastern medicine or new approaches with a healthy dose of skepticism and analysis. It is up to us to be informed and listen to our gut-level instinct. Do not be afraid to ask questions, or a second, third or fourth opinion or for help. Follow your heart and listen to the inner-voice, especially if it gives you pause.

Into the wild I walk. My next MRI on December 6th will be a baseline from which to read all future MRI scans, initially occurring every three months. Whatever the next MRI reveals, it will certainly look different than prior to the “event”, the two surgeries and radiation. There may be what they call “artifact” – dead tissue, debris, undigested pretzels, M & M’s. The titanium screws and hardware stay. The swelling should mostly gone by then. So the real moment of truth will happen sometime in February if things look the same as the scan from December, we breathe deep. If they don’t, well, we just breathe deeper and keep on walking.

Finally I will share what I have found to be the very best medicine. In addition to the joy of spending quality time with family and friends, a good meal, meditation, playing music, writing, going for a sold walk or hike in the woods, a snowshoe or a ski (something we have already been able to do thanks to the Halloween snow), my primary escape has been the bath. Warm, calming, quiet baths, perhaps with a candle, a glass of wine, soft music and a book. I tell the family I am off-duty as I create an “environment.” I float away…

I have taken to making my own bath salts after testing dozens of prepared versions as they can be rather expensive. I am perfecting the recipe: coarse sea salt, mineral salt, epsom salts, which help the body to replenish potassium and enzymatic activity, milk powder, and whatever oil to either calm (lavender) or invigorate (eucalyptus). My first version used lavender oil and lavender buds but left me with a bathtub which looked like it had become infested with bugs as the buds stuck to the entire tub and plugged the drain. Perhaps there is a market for “Moose’s Bath Salts.” I just need a picture of my namesake in a tub so if you have a large tub…

Laugh. Love. Live.

-MRG

MooseBath, LeAnne Sowa

The Ramones- I Wanna Be Sedated
Twenty-twenty-twenty four hours to go I wanna be sedated
Nothin’ to do and no where to go-o-oh I wanna be sedated
Just get me to the airport put me on a plane
Hurry hurry hurry before I go insane
I can’t control my fingers I can’t control my brain
Oh no no no no no
Twenty-twenty-twenty four hours to go….
Just put me in a wheelchair, get me on a plane
Hurry hurry hurry before I go insane
I can’t control my fingers I can’t control my brain
Oh no no no no no
Twenty-twenty-twenty four hours to go I wanna be sedated
Nothin’ to do and no where to go-o-o I wanna be sedated
Just put me in a wheelchair get me to the show
Hurry hurry hurry before I go loco
I can’t control my fingers I can’t control my toes
Oh no no no no no
Twenty-twenty-twenty four hours to go…
Just put me in a wheelchair…
Ba-ba-bamp-ba ba-ba-ba-bamp-ba I wanna be sedated
Ba-ba-bamp-ba ba-ba-ba-bamp-ba I wanna be sedated
Ba-ba-bamp-ba ba-ba-ba-bamp-ba I wanna be sedated
Ba-ba-bamp-ba ba-ba-ba-bamp-ba I wanna be sedated
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About moosevt

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