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.