“I have a simple philosophy: Fill what’s empty. Empty what’s full. Scratch where it itches.”
–Alice Roosevelt Longworth
I don’t know if you have heard of such incidents, but every once in a while there is a story of some mentally unstable individual who either hijacks a tank from an armory or takes an up-armored bulldozer and goes on a destructive rampage. Sadly, most of the time, that person meets an untimely death either by their own hand or by the authorities. The images of an enormous bulldozer plowing over everything in its path is an apt metaphor for the past few weeks. And my guess is Lord Valdemort or Sith master Emperor Palpatine was at the wheel of our uninvited assault vehicle.
Barb has described the experience as if we were trapped inside of a snow globe, turned upside down and shaken. The liquid and snowflakes are a whirling storm in which we are stuck. We are upside down. Those snowflakes will, of course, settle. But when? In time…in time.
The first thing which concerned me, when the news was delivered of tumor/cancer, which ripped me into shreds, shattered me into a million shards, was the well-being of my children Hannah and Libby. I did not care about anything else. My stomach became stone and my heart numb. And I all I can think of now are the calamities suffered by families who have endured trauma. It hurts my heart. Soldiers back from war, environmental disasters, terrorism, victims of heinous crimes, accidents, disease, genocide. These are global horrors experienced daily with an impact zone that ultimately touches all of humanity. I believe this deeply.
By comparison, thinking along these thought-lines, I am happy, overjoyed, to be alive. Today I celebrated my birthday and today was indeed a day to celebrate: I had a birthday! (OK without my desired margarita but I can deal…6-8 more weeks…I think…)
Yes, I cry, but to be honest I have not yet given myself enough time to mourn, it’s been so much, so hectic. So much new information to download, a new language to learn. When tears do come, they come at night, alone, when I go downstairs, when I can’t sleep and don’t wish to keep Barb up. The steroids for swelling are fighting against my body’s desire for sleep. Ultimately, with the help of the right music, I can find that place again and get back to the center. But sometimes I feel like I want to lift a house or a car and toss it over the bank. Some of that is the medicine, some is deeply seeded fear and anger. I know this and I accept it and in time will face and deal with it. In time…in time…and I will fight this, like the cancer with love and humor. Loving your enemy has a new twist.
Oddly, I have flashback moments watching the Incredible Hulk on TV as a kid. Watching the trailer now, it’s pretty freaky actually. Dr. David Banner, “physician, scientist” experiences his transformation into the Hulk is a result of over-radiating himself during research. But in some strange way, and I think partially because as hokey as that show was, Bill Bixby (Courtship of Eddie’s Father, etc who sadly passed away in 1993 to prostate cancer) played David Banner with a certain 70’s era humanity, I identify with the Hulk. (he is, large, green, grunts a lot and likes to run around with no clothes on, after all) On some level I would bet that many, especially men, identify with the subcutaneous rage of testosterone that sometimes simmers beneath…we all have our inner Hulk, played by Lou Ferrigno (who is in real life a professional, partially deaf body-builder of note) but that is another topic entirely. So the landslide of events, combined with the steroids, combined with the physical trauma of having your head opened up and re-sealed with titanium plates and screws certainly leaves one with some modicum of desire to release anger and frustration. Not towards someone, thankfully, but perhaps towards some inanimate object with no harm done.
“Don’t make me angry. You wouldn’t like me when I’m angry” – David Banner/Incredible Hulk
Ironically, recently I have taken to hitting golf balls as a form of relaxation and release. Now, given the toxic golf ball removed from my head, I have a new reason to take out my aggression on golf balls. (bicycling, music, food, skiing and friends are the preferred drug of choice) That I must have another surgery, bluntly, sucks. But I am in great hands with the very best. And, as I have shared before, opening up my head again and electro-cauterizing what is left of the tumor, followed by six weeks of radiation which, according to what I’ve been told will leave me nauseous, extremely tired and without hair, pales in comparison to the dark cloud I will learn to live with for the rest of my life and in a larger sense, I am just damned lucky to be alive. Those crazy cancer cells! Bad cells. Bad cells.
The swath of chaos and destruction an event like this cannot be underestimated. Barb, mother of two of her own and step-mom to mine, has a job. She has a life. A house to tend to, friends and family, her own day-to-day challenges that life brings all of us. And now the tank has rolled through our home. It’s all quite terrifying. I, half-serious have simply apologized. Hobbies, desires, dreams, vacation plans, calendars all thrown out of whack (but not canceled forever!) Countless hours on the phone tending to the details of the next visit to the doctors, life insurance issues, (word to the wise, it’s true lightning can strike at anytime get whatever you can afford, now, pronto especially if you have children.. NOW.. did you hear me? NOW. Once you are diagnosed with such an illness you become uninsurable for life insurance), retirement issues, financial concerns, a desire to get back to normal, or settle in to the new normal, whatever that is.
My parents, sister, aunts, relatives have been rock-solid. My mother and father were here the day of the surgery and through the week. Dad, a steady, calm, loving presence, deeply concerned. Mom, dogged in her loving pursuit of ensuring I was receiving the very best care. My sister Kerrin, from afar, sending love and her own knowledge and access from her work as an editor for the National Comprehensive Cancer Network to help direct me to the right folks with this rare cancer. They have been more amazing than anyone could imagine. But they too are all blown to bits. Laura, my former wife and amazing mom to our amazing children, has also had her life turned inside out as the father of her children faces an uncertain reality. She has been there too from the start. Her partner and my friend Dave, lends a steady hand of support. My daughter Hannah, who on the second day of the event was on the 8th floor at DHMC talking to friends at Norris Cotton about helping to raise awareness of ependymoma cancer, has endured and seen more than any 15-year-old needs to as I slid downhill on August 1st, vomiting and dizzy as the tumor exerted pressure within my head and began hemorrhaging. Libby, who came back from being away at Lochearn Camp for Girls to find her dad had a tumor and cancer has been full of love and concern. Friends, former classmates, neighbors, colleagues new and former from near and far continue to be the wind in my sails as I glide into the unknown. And I am forever grateful.
I owe a debt of gratitude to friends and family near and far. This crummy turn of events has impact on so many. And I owe it to my friends and family to live a full life and do what I can to help make the world a better place.
Last fall, Barb and I were in NYC on the subway. A seemingly homeless man, or at the very least one very down on his luck, waltzed up and down the subway car singing and chanting. I don’t recall if he was fundraising. I think he was as I remember thinking here was a man engaged in the same work I was in, employing similar tactics in an upbeat manner. He didn’t seem to bother anyone. He was polite and sweet. But something was surely amiss. As he paced up the aisle, he looked at Barb. His eyes opened wider. He stopped. Looked at her. He looked at me. Looked at her again and turned to me, got smack in front of my face and smiled a broken but gracious smile. “You’re a lucky man. You’re a lucky man” he repeated.
Later that evening, on a different subway car from a different station, the very same man was on our train, participating in the same behaviour. Again, he caught our eye, looked at both of us, turned to me and repeated what he shared earlier.”You’re a lucky man. You’re a lucky man.” I think he was a shaman.
I am indeed a lucky man. In a million ways. And while this is a time in my life I feel like the baker in the ancient Sesame Street clip in which he announces proudly the pastry he is holding until he trips and falls down the stairs in a mess of pies, cakes and shakes, I will continue to make more pies. I will fall. But I will get up. Again and again.
Thank you for reading. Oh, and thanks for a great birthday. I am a lucky man!