-Riding that Bluegrass Train-Dona Nobis Pacem

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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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19 Responses to -Riding that Bluegrass Train-Dona Nobis Pacem

  1. jim grossman says:

    thank you as ever for sharing your heart. A deep, profound, articulate and loving heart.

  2. Andrew Dey says:

    Mark,
    I just discovered your blog. You write beautifully. Your honesty and courage are inspiring. Thanks for doing this.
    –Andrew

  3. Konstantin von Krusenstiern says:

    Thank you for making our lives fuller with your writing. Thinking of you.

  4. humanekt says:

    As is usually the case, your post left me still and silent, reflecting…. You’ve been on my mind and in my heart every day, Mark. You’ll remain in those places.

  5. greg says:

    let me swim in your warm embrace
    goddess of loving kindness
    let me laugh as a child in a father arms
    let me love so that i forget who i am
    i have done these things and so much more
    yet i do not want to let eternity slip away
    i love her so.
    mark, thinking of you.
    love greg

  6. Ellen Roney says:

    Mark, I know I don’t comment enough, but I’m always eager to read your posts. Your honesty about your experience is so engaging and at times heart-wrenching. It allows me to feel like I’m right there with you. And while I’m not, please know that you are in my thoughts always. I hope you continue to find many more moments of happiness with those you love and are able to fight back those moments of irritation.

    All the best to you and your family.

  7. Cara says:

    Try John of God, why not?

  8. Ken Brautigam says:

    Your grace, humor, strength, and courage help us to be better people. Thanks for sharing this journey with us, Mark.

  9. Wendy Goldberg says:

    Thank you Mark! I could hear your voice while reading this. And you certainly have stayed the same in all the right places. My memories of you in HS are exactly this: friendliest, happiest guy. Only time ever saw him angered was over social injustice.
    I love that advice you received to “stay real” and “enjoy” things we all should do every day no matter what.
    I don’t know what to say but I’m so sorry that you’re going through this.
    Loved reading your writing and need to start following your blog here. Also LOVE the beach photo of the Grans! Classic! Oh, and watched that awesome doc you posted about the school in Putney, Vt. From now on my students will be learning the Gettysburg Address.
    I’m sending you love & spirit everyday and will be at your special Meeting in a couple weeks.

  10. Laurie Fichter says:

    Mark- your train is carrying us all along with you. You are giving us the gift of your beautiful writing, incredible thoughts, and magical appreciation of life. We love you- xo

  11. Julia Jensen says:

    We love you Mark. Thank you so much for writing all of this down.

  12. Tim Scott says:

    Mark, you coming to inspire even as your struggles must wear you down. I feel privileged to be riding along on your journey and appreciate your willingness to simply push at the boundaries. Think of you and our friendship, often
    Tim

  13. Love you Mark, so glad you are writing – you help me get out of my own wobbly head and think about others. I’ll remember to love both the rain and the sun. Sending good thoughts your way…

  14. John Bell says:

    Thanks Mark! This is quite profound and I appreciate it greatly; also your persistent sense of humor, among all the other vivid sentiments articulated here!

  15. Wendy Whitman says:

    Mark Green,
    You are an exceptional human being.
    Wendy

  16. jodesmm says:

    Someday, Hannah or Libby will write about you, in a class, or an article, or a book, and every person who reads their words will have a moment or two where they will be encouraged by your strength, honesty, and vulnerability. Perhaps they will share your story and how it made them feel. In this way, you will live on, and that is no small thing. But that time is not know. Stick with us and keep writing the kinds of things that inspire me to write this.

  17. jean brown says:

    We’re here, Mark. We’re listening. xoxoxo

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