“What lies behind us and what lies before us are tiny matters compared to what lies within us.”
-Ralph Waldo Emerson
- Huffington Post, October 27, 2014
- “How long have I been sleeping?” – J.B
- it was like this
- One Headlight
- -Riding that Bluegrass Train-Dona Nobis Pacem
- “Many men go fishing all of their lives without knowing that it is not the fish they are after” – Thoreau
- “Mirth is God’s medicine. Everybody ought to bathe in it.” — Henry Ward Beecher
- “If there ever comes a day when we can’t be together, keep me in your heart, I’ll stay there forever.” ~ Winnie the Pooh
- “the ability to just sit there…that’s being a person” LCK
- “It became necessary to destroy the town in order to save it”
- October 2014
- July 2014
- June 2014
- May 2014
- April 2014
- January 2014
- November 2013
- September 2013
- August 2013
- July 2013
- June 2013
- May 2013
- March 2013
- January 2013
- October 2012
- September 2012
- July 2012
- June 2012
- May 2012
- April 2012
- February 2012
- January 2012
- December 2011
- November 2011
- October 2011
- September 2011
- August 2011
The opportunity to reflect is a gift: what was, what could’ve been, what might be, 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” and another, “ululo,” meaning to wail, and in my private moments I have found myself doing just that, “keening,” often loudly late in the night. This website offers a wonderful overview of this tradition though many cultures in lamenting the dead: http://www.winnipegrealtors.ca/Resources/Article/?sysid=1769 and while I am by no means implying that I am in fact no longer here, the emotions that come through the raw fear that occasionally grip me 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 punchdrunk boxer in the ring: DeNiro in Raging Bull with fists coming slow, hard and unrelenting. I know I’ve referred to the Native American character in
“One Flew over the Cuckoo’s Nest” who in the end 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 being top- rate, being tethered (and often entangled like a fish caught in a driftnet) to an IV pole day after day, having it wrapped around my legs and arms having to unplug every time I have to go to the bathroom trying to get there before it’s too late, having it pull on my PIC-lined arm is not a friend I wish to be attached to. The notion of tossing the entire IV pole through the plateglass window comes to mind quite often. Imagine my excitement when I found out that the Au Bon Pain was open 24 hours and and they served lobster salad sandwiches on a croissant. While the methotrexate sessions last about three hours I’m allowed to move about the cabin after that when they then administer the leucovorin in the ensuing days, designed to bring the levels of methotrexate down to a safe place for my taxed organs. On one journey at three in the morning 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+ years of nursing. 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, family and my daughters.
“How long have I been sleeping
How long have I been drifting alone through the night
How long have I been running for that morning flight
Through the whispered promises and the changing light.” – Jackson Browne
It was like this:
you were happy, then you were sad,
then happy again, then not.
It went on.
You were innocent or you were guilty.
Actions were taken, or not.
At times you spoke, at other times you were silent.
Mostly, it seems, you were silent- what could you say?
Now it is almost over.
Like a lover, your life bends down and kisses your life.
It does this not in forgiveness-
between you, there is nothing to forgive-
but with the simple nod of a baker at the moment
he sees the bread is finished with transformation.
Eating, too, is a thing now only for others.
It doesn’t matter what they will make of you
or your days: they will be wrong,
they will miss the wrong woman, miss the wrong man,
all the stories they tell will be tales of their own invention.
Your story was this: you were happy, then you were sad,
you slept, you awakened.
Sometimes you ate roasted chestnuts, sometimes persimmons.
I sit here looking out at the verdant forests of Lebanon, New Hampshire at Dartmouth Hitchcock Hospital, using the often inaccurate and potentially lethal iPhone dictation, as my left hand has been rendered virtually useless thanks to the paralytic aftermath of seizures(how many times, for those who have used this function have had near misses and professional or personal fatalities with erroneously interpreted language?
You might be telling your mother-in-law that you just bought a new truck and iPhone dictation interpreted it as something else entirely, rendering your relationship deeply scarred requiring further explanation. At the moment I’m given this great opportunity to reflect in relative peace despite being interrupted every two hours by nurses and doctors and with the drip drip drip of the new high dose chemotherapy I am being administered, methotrexate requiring a five night stay and another five night stay in two weeks followed by an MRI. I write this out of a desire to continue my explanation and exploration of this meshegoss (Yiddish for f*#ked-up) uncharted journey. The tumor continues to grow unabated and I am trying this drug, which normally does not cross the blood brain barrier but it is thought that in high doses it may succeed given previous studies. This is a drug normally administered for leukemia and lymphoma among other diseases.
And I will start the whole process over again in a few weeks with an MRI to see if anything has worked. I refuse to think that the road continues to narrow into a dead-end but will have spur trails that will lead us in new directions.
There’s no question that the equal exchange between hope and the loss of hope has played an interesting war of the worlds within my psyche. There is not a day that goes by I don’t find something across my screen that inspires hope whether it’s a new trial therapy or another new potential option but yet nearly all of these are in the very early stages of application. I do know that the approval process continues to be tweaked to be sped up but the advancement of science requires time and resources.
For me, I think Joni’s got it right. “We can’t return, we can only look behind from where we came and go round and round and round in the circle game.”
This blog written in memory of Melanie Delonge, friend, neighbor, my daughter’s first daycare provider. You are missed and loved.
In what is surely one of the most bizarre exhibitions of high school athletic sport, the ritual of making weight before a wrestling match knows little equal. I still recall the sprightly Alex Leeser running around the main building in circles multiple times wearing several layers of Glad garbage bags with duct tape at the wrists and ankles, shaving ounces off his already slight frame before we met our next competitor. I was never very good at wrestling. I enjoyed the psychological intensity facing an opponent. I was often outgunned and outperformed strategically often never knowing what hit me until my nose was being ground into the mat. But it didn’t matter, we had a great team and a lot of fun. Well if I’m striving to make some sort of weight now I guess I have succeeded. I now weigh 173lbs, the lowest I can recall since high school. Having weighed as much as 215 pounds post-college thanks much to a four-year infusion of blue cheese and chicken wings, standard upstate New York college fare, and becoming a new parent. I would like to to think it was a case of “couvade syndrome” a term meaning “sympathetic pregnancy” I’m not sure Laura would buy that. I was once up to 215 lbs and a size 38 Now? 33-34″ waist. I am now size Medium to Large shirt from XL. Oh well. None of that matters.
In what was one of the more sobering moments this week my friends Chris and Eric stopped by. After installing another handrail on the stairs, they put their hands on my shoulders, set me down on the porch, a beer for each of us, and swore me to a blood oath to promise that I would never again get in my car and drive. My tears and anger flowed, but I knew they were doing this out of love and concern not just for me but for my friends, family, my children and everybody else out there. It would have been unfair of and selfish of me to do anything otherwise. My declining health, seizures, left-side impairment and risk of not being fully cognizant of where I am and in what space is too much to chance. Needless to say this was hard news to take.
I have spoken to many people whose families have endured the struggle of having an individual with a debilitating, disease accident or other trauma who had their driving privileges taken away.They all shared this was one of the hardest moments. To lose one’s independence is to lose a sense of self. Living in a rural area makes this new reality that much more difficult but I’m grateful for friends and family who who are here and willing and able to help- we are so dependent on car culture and the myths and reality of freedom attached to it is a deep loss. Whether it’s flying down the highway with the music on full blast with the sunroof open just wandering and exploring, one of my favorite things to do, or taking a road trip with friends. There are ways around it and it will be fine.It will all be fine. At least I know there is comfort in knowing that those who know me will breathe a deep sigh of relief knowing that I’m no longer on the road. I’m doing this in the interest of national safety as a national priority given my past driving record.
I will now take a moment of silence to remember the fallen. My 1965 postal Jeep bought for $400 in old Forge New York which I had painted Hunter green with purple trim. My 1987 emerald Green Volkswagen Scirrocco (which means “desert wind.” that I rolled on black ice in Richmond Vermont. The Subaru I took airborne causing great undercarriage damage. The Honda sedan which I took into a ravine after sliding on wet leaves. My dad’s mustard yellow Toyota Corolla in which I bent the axle after hitting a tall curb. My parents’s days-old 1987 Chevy Colt Vista, wagon, also rolled and totaled. The 1976 Toyota FJ40 I traded, stupidly, with a friend for his 1993 Saab Turbo which became known as yet another “Saab” story after multiple alternator problems, a missing reverse gear and a stick shift that kept coming out in my hand. Or the 1990-something Toyota SR5 looking like an ugly breadbox and held together with annoying bumperstickers which was so rusted that when I took it through car wash before a date in Burlington the foamy water came pouring through the windshield onto my nice clothes. I know there are others but I can’t seem to recall, either by design or true loss of memory.
I have a friend, Neil Taylor known as the blind masseuse I visited recently. We call ourselves the tumor twins. He also has brain cancer and in addition he is blind because an optic nerve was impacted. He is an inspiration. As he also cannot drive we will make do and I will get a ride to his house and we walk down into town together and have a beer and dinner. I know I can speak for each other when I say this will be a highlight of the week for both of us. His attitude is simply remarkable.
to end: two great road trip songs among the many which just make me want to get in the car. And drive. “One Headlight” is particularly apt
I am on the tracks. Train is coming. The tumor is growing. The previous chemo is not working. I am trying another round. The trip to Duke proved that because of the location and heterogeneity of the cancer I am ineligible for clinical trials involving such recently reported experiments as injecting the polio or measles virus directly into the tumor site. Surgery is not an option. Too diffuse. I am told it is “Like an iceberg where we can see the top but because of the nature of the tumor, we can only see it spreading within the MRI. We must lay more tracks. Do I see John of God in Brazil? Try experimental medicinal marijuana oil therapy in Colorado which while unapproved, shows promise but is costly and time consuming ? My current new course of chemo, Avastin (again) in combination with lomustine can’t continue for longer than nine months due to long term side effects- white blood cell counts, fatigue, pulmonary function and platelets. We must lay more tracks. Slow the train.
Go to Hell Kübler-Ross!
From Wikipedia. The Kübler- Ross model, or the five stages of grief, is a series of emotional stages experienced when faced with the impending death or death of someone. The five stages are denial, anger, bargaining, depression and acceptance.
Maybe it’s the steroids to prevent more swelling from the growth of the tumor, causing headaches and imbalance – I can only type with one finger- now using dictation device sometimes, then transfer from iPhone, but maybe it’s just me. 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.
But lately things large and small and often meaningless have begun to irritate. Mind you I am grateful for every day I can take a breath or walk with my own 2 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. I am on a new different course of chemo which is already having effects on many different things.
Whether it’s 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 which 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 whomever 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. Recollecting the commercials for the “help I fallen and I can’t get up!” But now my dear friends 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. Previously in my other roles in development I might meet with an angry alumnus who threatened not to give to whatever alma mater from which they had graduated because their poor football team did not have a winning season or their ineligible child failed to get accepted. Boo hoo. “Do you know who I AM? “They would whine or threaten. It was hard to keep my mouth shut before smiling, heading for the door and saying with great enthusiasm “thank you I hope you will consider a gift this year!”The hotel was ironically named ” The Mark”and she said “Mark, you are a good man, you are a good dad and your kids will be okay. And 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, MA to the Quaker service being held in my honor at my alma mater to my friends, neighbors, colleagues at ABC2 and my beloved family. And my two daughters Hannah and Libby, my pride and joy. Thank you. Thank you. Happy.
Grant us peace. Don nobis pacem.
“Many men go fishing all of their lives without knowing that it is not the fish they are after” – Thoreau
“Not all who wander are lost” – J.R.R Tolkien
When I was around twelve or thirteen, I placed a map of Alaska from an issue of National Geographic next to my bed. Pinned through the dark scores between the faux walnut paneling, the map, along with that issue became a dreamscape of grizzly bears, vast terrain, soaring snow-capped peaks, and salmon-filled rivers. I imagined planes equipped with pontoons landing on remote lakes or planes with skis gliding onto the frozen tundra. I had delved into what became one of my most memorable books during those formative years, John McPhee’s Coming into the Country. I knew then that I wanted to become a bush pilot. Reading his other books equally captivated and inspired but this one left me hungry. I’ve always been hungry. And restless. And now with another lightning bolt hurled my way (damned you Zeus give me a break!) my hunger for life and living has only increased.
Tuesday was a rough day. Aside from the usual bother of the early morning commute to Dartmouth for a 6:00 AM MRI (a necessary lifesaving device of aural claustrophobic torture) and the din of hospital life I was told soon after that the scan showed “significant” tumor growth and that they were not going to administer chemotherapy as the Avastin/Carboplatinub combination was not having its desired effect. The tumor, a unique grade III mixed glioma with astrocytic and ependymal cancer cells is now being treated as a GBM, a glioblastoma multiforme. “It’s time to get your affairs in order” I was told. My hourglass suddenly needed more sand.
It was timely then that I happened to visit a therapist just two days later whom I had not seen in awhile. 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 Dartmouth made-in-Maine 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 to 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. Our largest event, held on Sunday, May 4th in Washington, DC, stands to raise over $2.5M for brain cancer research and I myself, along with my colleagues continue to reach out to those touched by this disease who may wish to support our initiatives.
Tuesday I head to Massachusetts General to see my neurosurgeon and another accomplished neuro-oncologist for consultation and within the next week or so I will fly down to Duke for another consultation about possible enrollment in clinical trials perhaps involving immunotherapies which uses the body’s own immune system to fight the spreading cancer. I must also seriously eliminate or significantly reduce sugar and carbohydrates, something I have already been doing but can do better, which help feed the cancer.
I will continue to fight the fight and 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. 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. At the very moment, thinking of the drum metaphor, the insanity of this unfortunate card we’ve been dealt is best captured by the mayhem of the Muppet “Animal” with apologies and in remembrance of Keith Moon. Stupid cancer.
“What will our children do in the morning if they do not see us fly?” – Rumi
Fly I must and fly I will.
In a recent post, writer and stage IV non-Hodgkin’s lymphoma survivor Robert Kessler wrote in his blog a remarkable piece in which he took a stand in defense of blogging and took issue with a rather insensitive assault on stage IV breast cancer survivor and blogger Lisa Bonchek Adams by Guardian writer Emma Keller and her husband Bill, a former New York Times editor as they accused her of over sharing. This got my chemo-infused blood boiling in defense of my fellow blogging cancer brothers and sisters.
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 savings time anymore. It’s just savings time. And some write. Publically and privately.
The piece by Robert incited me back to the keyboard. After my initial diagnosis of stage III mixed glioma brain cancer in the summer of 2011 and the subsequent five craniotomies, radiation, shunt installation, ongoing chemo regimen of Avastin/Carboplatin and seizure management, living with cancer is more or less just a fact of life. Eventually the Carbo will need to be stopped because over time the kidneys become overtaxed. 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. My younger daughter and I had the good fortune to Nordic ski in Quebec as we have every year (she, skiing an average of 20 miles a day, I much, much less so) while my older daughter raised over $11,000 for The Norris Cotton Cancer Center through a fundraising climb up Kilimanjaro. Proud poppa am I.
One aspect of my own coping strategy is to tap more readily into the elements which provide nutrition to my heart, body and soul. Music. Food. Friends. Family. Laughter. My work.
I have music on throughout the house on at all times, usually Vermont Public Radio’s classical station. ( Yes I am a proud sustaining member!)
I love food. I love it more. I want to travel. I want to travel more. I do truly want to live each moment in the moment, as best I can for as long as I am physically and mentally able.
Friends far and wide, close and merely acquainted give me wind in my sails. My community, from the post office to the local café to the pub to the brain cancer community, offer a lift.
A walk, a ski, a snowshoe in the woods, fill me. And, when I remember, just being silent, maybe watching intently the birds at the feeders.
One of the elements of my living a happy life is avoiding stress and finding humor in between the crags of the day-to-day as well as that which vexes. 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 got in my car, my dear black VW Jetta Sportwagen, started up and began to back out. There were some crunching noises 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.”
“Today we fight. Tomorrow we fight. The day after, we fight. And if this disease plans on whipping us, it better bring a lunch, ’cause it’s gonna have a long day doing it.”
― Jim Beaver, Life’s That Way: A Memoir