The End of A Road Well Traveled

With inestimable sorrow, we must inform you that Mark Richard Green completed his journey on February 27, 2015. The caring and devotion of all those who were with him during these last months, particularly the wonderful people of the Walpole, NH and Saxtons River and Putney, VT communities and environs,  cannot be measured, and no amount of thanks can be adequate. The following appeared in the Brattleboro Reformer on March 5, 2015:

“Mark Richard Green, born August 18, 1967, passed away in Walpole, NH on February 27, 2015, peacefully, smiling and with his joy and passion for life intact.  Mark’s enthusiasm for life was equalled by the vigour and intensity with which he confronted his illness. He described his fateful journey through his blog “moosevt.wordpress.com.”

“A native of Philadelphia, PA, Mark was a proud “Lifer” (K-12) graduate of Abington Friends School, in Jenkintown, PA. There he developed a strong sense of justice, equality and human rights, and a deep passion for the outdoors.  He then graduated from Hamilton College (Clinton, NY) with a B. A. in English and a Minor in Studio Art, and earned his M. Ed. at the University of New England, Antioch in Keene, NH.

“His love for friends and family, and in particular daughters Hannah and Libby, sister Kerry, former wife and dear friend Laura Gaudette, Aunt Carolyn, beloved friend Barb Silbey and parents Beverly and Stephen, was limitless.

“Mark loved nature, outdoor sports, music, photography, food, travel and adventure.  He visited Costa Rica, India, China, Hong Kong, Taiwan, Korea, Egypt, France and Puerto Rico and he pursued studies in British drama and writing at the University of East Anglia, England.

“He spent several summers working in Durango, CO and was an administrator at Verde Valley School in Sedona, AZ.  Some of his most formative times were spent at Twin Lakes in Shohola, PA – fishing, sailing, swimming, skiing, skating, biking and carousing.

“Mark served on the Boards of Friends of the Norris Cotton Cancer Center at Dartmouth-Hitchcock and the Saxtons River (VT) Main Street Arts Center, and as a village Trustee in his beloved Saxtons River.  He was also a DJ for the local community radio station “WOOL FM,” on a show he aptly named “No Depression,” featuring “old time,” honky-tonk and “hillbilly” music, and he was proud to be part of The Bread and Puppet Theatre in Glover, VT.

“Mark taught and worked in financial aid and admissions until devoting his talents to fundraising at The Grammar School and The Putney School in Putney, VT, Dartmouth College and its Thayer School of Engineering in Hanover, NH, and finally, for Accelerate Brain Cancer Cure (ABC2) based in Washington, DC, where he literally dedicated his life to the cause of funding research and new treatments and hopefully a cure for the incurable disease which ultimately ended his adventure.

“Mark lived every minute of his life. It was an adventure he shared with his girls and an uncountable number of friends.  He was an authentic, special, good man, kind, generous, funny, adventurous and beloved by all who knew him.”

The loving comments on his Facebook page attest to the fact that we are indeed fortunate to have had Mark in our lives. Hold him in your thoughts and hearts.

His family and “Friends of Mark.”

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Void if Detached

http://youtu.be/O4XskfT6vNY

I am under hospice care now. My first thought has been “hospice care? At the age of 47? Really? This launch of incredible services which I am only now beginning to understand: A hospital bed has been installed, grab bars, galore.

The furniture has been moved around significantly, thank you friends!)the bathroom, physical and occupational therapy tools as well as welcoming 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 my family as well as my eager stomach!

Many Years ago when my grandmother Ethel was slowly dying from emphysema she, ironically being a nurse years ago who had smoked    9 like so many) in her past , watched her writhe 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. Then,Almost until her last breath,which occurred soon after I whispered into her ear grandma, “it’s okay you don’t have to fight anymore,you can let go now.”I had just flown in from Arizona to say my last goodbyes. With the aid standing by I left her apartment and she passed soon thereafter. And another incident this past summer I had a fairly sizable seizure when a friend who had recently cared for her ailing father rushed to the scene and 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.

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Huffington Post, October 27, 2014

http://www.huffingtonpost.com/mark_green/brittany-maynard-brought-_b_6054994.html

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“How long have I been sleeping?” – J.B

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

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it was like this

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.
–Jane Hirshfield
 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.

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One Headlight

 

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

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-Riding that Bluegrass Train-Dona Nobis Pacem

a

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.
Happy.
Grandpop Bennett and great Aunt Sarah

Grandpop Bennett and my great Aunt Sarah, who is 101 and sharp as a tack!

Grant us peace. Don nobis pacem.

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