July 31, 2012: As of this evening, it will be exactly one year since I nearly slid into the abyss.
The dates are etched in memory.
On July 31, 2011, month-long headaches devolved into calamity.
At 12:05 a.m., Aug. 1, I was admitted to Cheshire Medical Center in Keene, N.H., and later rushed to Dartmouth-Hitchcock.
On Aug. 2, 6 a.m., my first craniotomy, a 4.3-cm tumor removed.
On Sept. 6, second craniotomy to remove residual brain cancer tissue.
On 11/11/11, I marked the end of 33 radiation treatments to my brain. This morning, I went to get night crawlers and supplies for fishing. The receipt was for $11.11. It was just after 11 a.m.
My teenage daughters and two of their friends are slowly waking after a whirligig ride of a weekend consisting of sailing on Lake Champlain, eating our way up and down Church Street, taking in the earnest, bohemian street performers, shopping (of course, what with two daughters and two of their friends), attending a most wonderful Wilco concert, and camping out at the North Beach campground.
It was a great weekend of just being a dad to my fantabulous daughters and enjoying all that the great state of Vermont has to offer.
After closing out with a sumptuous brunch, we set off for Pennsylvania, traveling through the lush pastures and apple orchards of Addison County with the Green Mountains to the east and the Adirondacks to the west.
To my parents' summer camp we drove, where I now have a moment to breathe deep and pause to write. Nothing like a near-death experience, nor continuing to live with a deadly disease, to further deepen an appreciation for all that surrounds.
Carpe diem, indeed.
The headaches continue, my moods are not always steady, and my memory chip often feels as if it has been placed too close to a magnet, scrambling things up a bit.
While I have certainly become a brain cancer evangelist, the “survivor” moniker always make me uncomfortable, but I know at the core is that such a nod might inspire others, no matter their ailment, to do what they can to help advance the “cause for cure,” as it were. Awareness is tantamount.
Last night, as I slipped into the dark, warm waters of this glacially formed, spring-fed lake, the hazy moon casting a soft glow on the lily pads, I felt a great sense of calm with the usual current of fear, humming steadily but softly, like the hum of an overhead power line, inside the porous marrow of my bones.
What a year it has been. What a year it has been.
* * *
Jan. 4, 2013: Living with cancer is like:
• Awaiting Jack Nicholson as Jack Torrance in The Shining to smash his way through your door with a fireman's axe screaming “Heeeere's Johnny!”
• Being served a birthday cake with trick candles that don't ever blow out.
• Swimming in shark-infested waters.
• Having a hornet's nest nearby at all times.
That said, when times get tough, I think of what Teddy Roosevelt would say: “Bully!”
Or perhaps Winston Churchill: “The pessimist sees the problems in every opportunity. Whereas the optimist sees the opportunity in every problem.”
He also said: “Never, ever, ever, ever give up.”
I just spent a lovely holiday break with my daughters in Québec, nordic skiing at Mont-Sainte-Anne and celebrating New Year's in Québec City. Nothing like being surrounded by an historic fortress with French-Canadian folk music blaring from a frigid stage and everyone as happy as can be. The Québécois are fun-loving people no matter what the temperature.
At the ski center, gliding along a single-track trail with nothing but a canopy of snow-covered evergreens above and the soft snow under my skis, I often paused to take in the cold air in as deeply as I could.
My heart, mind, body, and soul were one. I was happy. I was at peace.
The journey has already begun, but I have new mountains to climb, trails to ski, and many rivers to cross. Happy 2013!
* * *
March 27, 2013: I walked into the intimate, mystical confines of Fisher's sugar house, maple steam hanging in the air, a sweet sauna. From old low timbers of the old barn dripped the dampness of spring.
The Fisher family and friends gathered, a springtime reunion, some with Vermont accents as thick as the spring mud, Vermont's fifth season.
Memories flowed, bringing quiet tears, of carrying my then-toddler daughters in my arms to inhale the maple, teaching them the ancient ways carried over from Native populations long passed.
“Forty gallons of sap makes one gallon of syrup, Daddy!” they would exclaim with delight.
Pee Wee, a stout firefighter with a horseshoe mustache holding court over the sample bucket, passed around tiny paper cups of fresh, warm syrup. Heavenly sweetness slipped down our throats.
Arnie, a multi-generation farmer, exclaimed without irony that he was a diabetic and thus could not even enjoy the fruits of his labor, at least not to eat. Another relative stoked the fire, while he skimmed the froth off the top as the sap boiled down.
This moment captured last weekend filled my heart with great elation. I contemplated my own mortality, my life here on this funny little planet. Cancer does that to you with a steady drumbeat. Those moments when you are frozen in your tracks and realize the beauty in things great and small.
I had no reason to turn up Pleasant Valley Road, a beautiful backstretch between Rockingham and Saxtons River, but something pulled me there. I saw the cars, the smoke rising from the rusted chimney, and I knew. It was a Vermont homecoming.
The art of making maple syrup, like life itself, when lived to its fullest, is about boiling something down to its sweetest essence. It is a science, a craft; and then there is that something else: faith and hope.
Faith and hope that when it is all done, all that we have left is the sweetness.
* * *
Jan. 15, 2014: We all manage challenge differently. Some see it as an opportunity for growth; some retreat. Some paint, compose, perform. Some suffer greatly, some just “roll with it,” some take up arms, some just want to party like it's 1999.
Some try to check off their “bucket list” (if they have the time, resources, and health to do so) as they acknowledge something has moved the clock forward prematurely. It's not daylight saving time anymore. It's just saving time.
And some write. Publicly and privately.
The bills from co-pays and deductibles keep coming, the headaches and fatigue change like the weather, and as long as I keep giving something back to the amazing institutions which have helped and continue to save my life, the waters are steady.
The tumor is still there, lurking. It has not shrunk, nor has it grown. We are keeping the needle in the middle, the dam fortified, the waters at bay.
I am fascinated by the science of laughter: the healthy chemical changes happening within the body when laughter takes hold.
Example? A few weeks ago, during a particularly icy and snowy time, I started my dear black VW Jetta SportWagen, and I began to back out. There were some crunching noises that I assumed to be chunks of ice built up in the wheel wells. I continued my exit rearward thinking if I simply powered out of the garage I would break free of whatever was causing resistance.
The sounds became louder until I heard what I thought was a torrent of glass raining upon the roof. It was exactly that. I had driven backwards through the multi-paneled garage door, shattering every pane of glass, destroying every wooden panel, ripping the whole damned thing right off the tracks.
I had no idea what I had done nor the extent of the damage until further inspection. I winced and let out a “what the -?”
Then I started laughing. The whole scene was absurd.
What else could I do? It was the healthiest response I could muster, and it helped calm me down.
“Whatever,” I said to myself. “Whatever.”
* * *
April 6, 2014: Now, with another lightning bolt hurled my way - Damn you, Zeus, give me a break! - my hunger for life and living has only increased.
Tuesday was a rough day. I was told soon after that the scan showed “significant” tumor growth and that they were not going to administer chemotherapy as the current combination was not having its desired effect.
“It's time to get your affairs in order,” I was told. My hourglass suddenly needed more sand.
It was timely then that just two days later I happened to visit a therapist whom I had not seen in a while. A cancer survivor herself and one learned in the ways of Buddhist practice, we shared moments deep and light.
“Cancer is a great opportunity for spring cleaning,” we laughed.
At one point, when speaking about being or doing something audacious, I said, “So little matters now.” To which she replied, “You can't even impress yourself.”
She went on to share: “You are free to experience life without the burden of needing to build something; you are just experiencing.”
The day after I learned of the results, I put my beloved carbon road bike up for sale, as my balance had deteriorated too much to risk a fall on a skinny-tired bike with clip-in pedals. For the moment, thankfully, I can still use a mountain bike.
The week prior, I had attempted to telemark ski at Stratton Mountain. Telemark skiing, another love, in which the heel is not fixed to the metal-edged ski but is used for backcountry or lift-service skiing, requires balance and strength I no longer have due to the cancer's insidious effects on my right parietal lobe. Same goes for skate-skiing, a form of Nordic cross-country in which the skier skis in a skating fashion.
So hang up my skis I must, lest I meet my demise against an immovable object such as a tree or boulder.
That said, I can still snowshoe and cross-country ski in the traditional “classic” fashion. I continue to work and my passion to raise maximum funds for Accelerate Brain Cancer Cure has only increased. My colleagues and I continue to reach out to those touched by this disease who may wish to support our initiatives.
Cancer, or any calamitous health event, impacts, like a meteorite, not just the afflicted but all of those in that orbit. It's a scorched-earth affair.
The steady drum roll of cancer beats on as I continue to learn of others being struck. Without fail, every time I have gone to Dartmouth, I run into friends who have just been hit. In one instance, I even shared an infusion suite (a misnomer if there ever was one) with my dear, sweet, former uncle-in-law.
I will continue to fight the fight - not just for myself, but for my friends and family. Holding on to hope. To exceptions to the rule. There are many examples of those who far outlived any prognosis.
* * *
May 22, 2014: I'm a pretty happy-go-lucky guy. Pharrell Williams has it right - he makes me want to go get a Curious George Man with the Yellow Hat cowboy hat and dance in the streets with his widely popular infectious groove.
Mind you, I am grateful for every day I can take a breath or walk with my own two feet or see with my eyes, hear with my ears, taste, touch, feel. I think of those who suffer much more greatly than I ever have and ever will.
But maybe it's the steroids to prevent more swelling from the growth of the tumor, causing headaches and imbalance. But maybe it's just me. It might be a new different course of chemo, which is already having effects on many different things.
Lately, things large and small and often meaningless have begun to irritate: the girls in Nigeria, the Boston bombing victims of last year, or the crimes in Syria and Crimea. I finally saw 12 Years a Slave, and my rage neared seizure level.
The toilet paper roll that you have to pick at to get started or is put on the wrong way. Bad service and/or bad food at a restaurant which are usually one in the same.
Extreme right-wing party members who want to limit people's freedom to marry whomever they want, prohibit a woman's right to choose or receive equal pay, those who make or act on racist comments or think global warming is a left-wing conspiracy.
Or of our wounded veterans who have inadequate health care and can't find work, or those who think regardless of ongoing school massacres we should continue with no sensible consideration for gun reform as if the right to own a high-capacity clip is a constitutional (or G-d-given) right. Or whoever designed the aluminum foil brick package that cream cheese comes in.
The latest thing to really send me over the edge? I received a brochure for 24-7 medical alert monitoring system with nice photographs of people who look nothing like me and an ambulance and the call button. I recall the commercials for the “Help, I've fallen and I can't get up!”
But now my dear friends have helped move my bedroom downstairs and have installed handrails in all bathrooms, reminding me of my late grandmother Ethel of years ago, bless her. And that is OK.
Yet in the darker recesses of my brain, sometimes all I can think of is Francis Ford Coppola's Apocalypse Now opening scene of the bombing of Vietnam with The Doors “The End” playing in the background.
But I am not morbid, I am not depressed, and I will stay happy as I always do and try. It's good medicine. Being happy makes me happy.
But screaming, crying, and wanting to pick up my car and toss it Hulk-style also comes to mind on occasion.
I had a meeting recently in New York with an incredibly kind woman who had lost her husband to a brain tumor. She had kids the same ages as I, and we talked a lot about our children and our love for them. We held hands and we cried right there in the lobby of the hotel, not standard operational procedure for my line of work in fundraising.
“Mark, you are a good man, you are a good dad, and your kids will be okay,” she said.
Then, later, she texted me and said that it was nice to meet but that she had given me some wrong advice. She said “Mark, I told you to stay strong. What I really should've said was stay real and enjoy every moment.”
Amen.
When I was first diagnosed, a dear friend, also a survivor, shared that when she was diagnosed with cancer she went through many emotions as most do in some form or variation, but that she came to embrace her illness as a gift.
I could not be more grateful for the love showered upon me and my family and wish I could pass it all down the line to those in need. From the prayer shawl knitted by a friend's mother's church in Edgartown, Mass., to the Quaker service being held in my honor at my alma mater, to my friends, neighbors, colleagues and my beloved family.
And my two daughters, Hannah and Libby, my pride and joy.
Thank you. Thank you.
Happy.
* * *
July 18, 2014: The opportunity to reflect is a gift: what was, what could've been, what might be - all becomes part of a deeply tumultuous swirl of emotion from places within I didn't even know existed.
Because of this cancer, I've been given this time, this heretofore unwelcome “gift.” And there is nothing like Jackson Browne to reach inside my heart and pull everything right up to the front, like the deep roots of some primeval tree, to unleash a torrent.
There is a Gaelic word “keen,” which means “to wail,” and in my private moments I have found myself doing just that - keening - often loudly late in the night.
There is a long tradition though many cultures in lamenting the dead, and while I am by no means implying that I am in fact no longer here, the emotions that occasionally grip me as they come through the raw fear act as both a healing function and a purgative. The way different cultures deal with death and dying is fascinating indeed.
After enduring two weeks of chemo in the hospital and a third to begin Tuesday, I'm feeling a little bit like a punch-drunk boxer in the ring: Robert De Niro in Raging Bull with fists coming slow, hard, and unrelenting. I've related to the Native American character in One Flew over the Cuckoo's Nest who ripped the sink from the flooring and smashed through the wall, releasing the patients from the asylum.
While certainly my hospital stays are nothing of the sort - the doctors, staff, and nurses all are top rate - being tethered to an IV pole is not a friend I wish to be attached to day after day.
I'm often entangled like a fish caught in a driftnet. It gets wrapped around my legs and arms; I have to unplug every time I have to go to the bathroom and try to get there before it's too late; it pulls on my peripherally-inserted-central-catheter-lined arm.
The notion of tossing the entire IV pole through the plate-glass window comes to mind quite often.
Imagine my excitement when I found out that the Au Bon Pain was open 24 hours and and it served lobster salad sandwiches on a croissant.
On one journey at 3 a.m., I somehow managed to detach my entire bag of sodium bicarbonate from my IV pole, which then exploded all over everything - including my beloved lobster salad sandwich. The nurse said he had never seen anything like it in his 10-plus years of experience.
Chalk up another disaster to my restlessness and midnight munchies.
Another MRI, more chemotherapy (even though the desired one, a “Mek” inhibitor, has been denied by insurance) as we try to beat this back. The one thing we can't buy this time is time. But we are trying.
The journey continues without knowing what's around the corner. My anger and tears mix with hope and the strength generously offered from friends, community, and family, especially my daughters.
* * *
Nov. 29, 2014: I am under hospice care now. My first thought has been, “Hospice care? At the age of 47? Really?”
This launch offers incredible services that I am only now beginning to understand.
A hospital bed has been installed, with grab bars galore. The furniture has been moved around significantly. (Thank you, friends!) The bathroom has been adapted; I now have physical and occupational therapy tools. I can welcome visitors on a careful, stress-free, measured, rotational basis to secure my safety from falling and to lift spirits.
Recently, I have been having a recurrent dream that I am standing on the edge of a cliff near the Grand Canyon. Behind me were friends, neighbors, doctors, nurses, and all of those employed to provide the care necessary to help me perform daily functions, like bathing and dressing.
There were times that dream becomes very threatening and I feel like all of these wonderful people are simply waiting to throw me over the cliff, stopwatch in hand.
I was initially overwhelmed by what was being offered and didn't understand it all. This sudden and suspicious invasion of my privacy and the elimination of my time began to become a point of misplaced resentment.
But as time moves on and I begin to understand and harness the generosity and hard work of those involved, I get it.
And I am very grateful as well as deeply moved by offers from friends and family to check in on my well-being and on that of my family, as well as to feed my eager stomach!
Many years ago, I watched when my grandmother Ethel was slowly dying from emphysema. She - ironically, being a nurse years ago who had smoked, like so many in her past - writhed in discomfort, trying to pull her thin, flowered-print nightgown over her weakened body. But most of all, she just wanted to maintain her dignity.
I had just flown in from Arizona to say my last goodbyes. I whispered into her ear, “Grandma, it's okay; you don't have to fight anymore. You can let go now.”
With the aide standing by, I left her apartment. She passed soon thereafter.
This past summer, I had a fairly sizable seizure when a friend who had recently cared for her ailing father rushed to the scene. The first thing she did was to help me wash my face with a warm, wet washcloth.
This act was knowing, loving, and caring, and it was the best remedy because it had nothing to do with taking pills in that moment but to restore my dignity. And it made a world of difference - to try to start up again with a fresh, clean face and outlook.
All within that one small gesture.
Needless to say, I have a lot to be grateful for.