“Life…is a state of mind” – Ben Rand, Being There

“Most people think life sucks, and then you die. Not me. I beg to differ. I think life sucks, then you get cancer, then your dog dies, your wife leaves you, the cancer goes into remission, you get a new dog, you get remarried, you owe ten million dollars in medical bills but you work hard for thirty-five years and you pay it back and then — one day — you have a massive stroke, your whole right side is paralyzed, you have to limp along the streets and speak out of the left side of your mouth and drool but you go into rehabilitation and regain the power to walk and the power to talk and then — one day — you step off a curb at Sixty-seventh Street, and BANG you get hit by a city bus and then you die. Maybe.” – Denis Leary

I woke up at 12:30 AM with a startle. I said to myself “OK, Mark, its time to cure this cancer.” The words fell out of my mouth and now I write in the wee hours of the morning, wide-awake once again. I had this bizarre notion that I had to call Alfred to get me to the Bat-Cave and suit up. Delusions of grandeur I suppose. I always liked Batman and his mysterious tortured-hero persona. And the Bat Mobile…and all those gadgets….the Bat Suit…

“I don’t use drugs; my dreams are frightening enough.” -M. C. Escher

I had fallen asleep somewhat troubled. I was doing the math of cancer survivorship in my head, a futile exercise. I had told myself to swear off statistics. But I went there.

Sleep has been a major complication what with the cocktail of medication for both the swelling of my brain from radiation combined with the emotional weight of what swirls above and below and around us. Last night, in an another attempt to actually get more than three hours of sleep at a stretch, I took hydromorphone for pain, two Lorazepam, and an Ambien. I told Barb, “please don’t let me wake up like Heath Ledger,” a beautiful actor who sadly passed much too soon as a result of an unintentional overdose. (Now that I write this, I realize his last role was the Joker in one of the latest Batman films…strange)

The result? Two hours of sleep, I’m up, lit like a lightbulb, wired and ready to run a race. And this, after starting to taper the steroid dexamethasone, for swelling. Now I know how Mark McGwire and all of those super-human athletes did what they did. I’ve been doing 30 push ups and 30 sit-ups just before bed to try to exhaust the energy out of my system. These medications, while often necessary and useful for many and a lifesaver for some, have wreaked havoc on my whole being and I look forward to eliminating them completely. It could always be worse…so rather than complain I just let them do what they need to do and grin and bear it.

When Barb and I were in Houston at MD Anderson, we shared a cab with a beautiful older couple from Kentucky who had commuted to MD for weekly treatment for the woman’s metastasized breast cancer. We immediately bonded and wound up with tears and hugs by the time we reached our destination. We were all in the same place, on this strange island of cancer, wading into unknown waters. At some point she admitted that she had become addicted to some of the medications but that given the larger cloud of the cancer, it helped her get through each day. The husband, warmly smiled, with glazed eyes and nodded in agreement.

Like my mother, my body seems to have a natural, organic chemistry which seems to resist chemical intervention. We have high tolerances, I suppose. Nothing seems to touch the headaches or the sleeplessness. Warm baths, candles, meditation all help shift my motor down, but sleep, I suppose, will come in due time. I would bet that sugar pills, a placebo would have the same effect, which has been nearly none. My body seems to metabolize the meds in a manner which renders them ineffective. I guess that’s better than having a proclivity towards addiction, which I do with bacon, chocolate and pretzels.

I was in the basement attending to my ongoing effort to organize my library of 2,367 music CD’s which had fallen out of my maniacally obsessive (and uncharacteristic) compulsion to sequence them by genre and then alphabetize, when a large mass of warm air forced me to sit down. The wave pushed slowly but forcefully my body to the floor. And the tears poured. Out of nowhere. This has happened on a few occasions in the past four months. Like a bolt of lightning. When I am alone. Music, a photograph, the smell of a wood fire or a beautiful landscape often act as triggers. A good bawl is a healthy physic.

I am 44. My children are 15 and 12. Without traveling too far down Macabre Lane, as I have every hope and intention of pushing this cancer’s ultimate destiny as far back as possible, it dawned on me that realistically, I will be very lucky if I live to 65. That is the hopeful number. Given the rarity of this type of cancer in adults, there are only two longitudinal studies I have come upon and, well, they don’t look so great. And yet, any number of medical setbacks or, hopefully, advancements in treatment can happen between then and now. A LOT can happen in cancer research between now and twenty years, let alone in the time it has taken me to write this sentence. I do not dwell on this too often but I believe it is a necessary and natural step in accepting this disease and begin to strategize in how I will best live my life to its very fullest (organized CD’s or not) At least I know it will include bacon, chocolate and pretzels although my meat intake is dwindling as per cancer-diet recommendation. And bacon, even if it’s as fresh and as local as I tasted the other day at Putney School (the pigs were raised on the farm…YUM) is not an indulgence I will partake in too often.

Many friends and family have lost loved ones to cancer. Fathers, mothers, brothers, sisters, grandparents, children. What knocked me down was the notion that I am fortunate to have both of my parents living and yet, I face the very real notion that by the time my children are in their 30’s, perhaps married perhaps not, perhaps with children, perhaps not, I may not be here.

Yes, I know, none of us may not “be here,” we simply don’t know when the “when” will happen, but as one cancer-Doctor-friend shared, off-the record when I asked him point-blank, “so really, tell it to me straight: what is UP with this brain cancer?” He looked a bit startled at the bluntness of my inquiry, leaned back, sighed, and said gently “Mark, you were dealt a very rare and strange card.”

Just setting this down in words gives me pause. What does this mean? In the most practical sense, it means that we will enjoy every moment in a manner never experienced. Everything counts. I know it sounds cliché. It means that the will and drive to succeed at my job knows no bounds, as landing back at Putney has been my long-desired career arc and goal all along. Being there fills my heart. It means that my desire to give back to my community and the greater good, has been amplified and thus have already initiated several projects to raise awareness for cancer and brain cancer specifically.

My relationships which were strong have only been made more so. Deeper, more open, more rewarding. Unresolved issues have been left to slough away as I prioritize what is important. My tolerance for the petty is even less than it was. This piece, the hyper-awareness of the seemingly small issues made unnecessarily large, can be illuminating, absurd, mind-boggling and sometimes hilarious. Alas we all have our neurosis large and small, so again, who am I to judge another person’s meltdown?

My phone calls to my parents and sister are longer, my ability to focus more intent. And while some might be surprised to hear this, I feel freer to speak my mind. Silence like a cancer…grows. As I have shared, every grain of sand…each granule…counts.

On the civil service front, I recently took part in  a national study on brain tumors by responding to an hour-long telephone survey and submitted a saliva sample via UPS (don’t worry, they have special lab mailers for blood, tissue and saliva samples lest anything bursts on our collective holiday packages) for MD Anderson in Houston, the largest cancer center in the world. MD Anderson is where I went this fall to meet with top physicians in the field of ependymal brain cancer, especially the notable Dr. Mark Gilbert.

I am helping to consult as a recently diagnosed cancer patient on a documentary film project based on the must-read “Emperor of All Maladies, A Biography of Cancer” by Dr. Siddhartha Mukherjee, getting the producer in front of some of the top people at Dartmouth-Hitchcock and I was asked to allow one of my blog posts to be used for the annual fund appeal for Norris Cotton Cancer Center. A large reason for this blog is to not only to help me process my journey, but to share with others in the hope that it may help those walking through this dark and confusing tunnel. Perhaps it will also inspire others to act. I have links on several websites including the National Brain Tumor Society and CERN (Collaborative Ependymoma Resource Network) and was recently published in the CURE Newsletter.

Because brain cancer is one of more rare forms, there simply is not the profit-motive for pharmaceutical companies to invest too heavily in research, technologies, medicines, clinical trials and the like. It is with this in mind I am also working with an extraordinary organization, ABC2, Accelerate Brain Cancer Cure, founded by the late Dan Case, who passed away at age 44 with four children and a wife to brain cancer, and his brother Steve Case. Steve was CEO of Time Warner/AOL and Dan, a highly respected and successful investment banker and Chairman of the Board of JPMorgan H&Q.

“In 2001, Dan Case was diagnosed with brain cancer. Discouraged by a lack of information and limited treatment options, Dan, together with his brother, Steve Case, and their families, founded Accelerate Brain Cancer Cure. We are a non-profit organization that partners with leading entrepreneurs, scientists and researchers to find a cure for brain cancer.” – ABC2 Website. I am thrilled to be involve with this dynamic group.

My daughters and I are working to establish a National Student Cancer Support Network for students in public and independent schools which has been given a hearty endorsement from Pat Bassett, President of NAIS. (National Association of Independent Schools)

There is a Shaker saying I admire, “Hands to work, hearts to God.” I will never be quite certain about the God question- that’s a whole other journey, but the phrase is fitting…we have much to do here on this funny little planet…why not make a difference and have fun? Selfless acts can fill the heart and raise the spirit.

Another Dr. friend, an oncologist who has been, along with her husband, by our side from the beginning of this entire journey, shared recently that the hard stuff begins now. The living with cancer part, for this will consume our lives in ways unforeseen. The path ahead is unclear but we are all holding hands, tightly.

For some reason, I keep coming back to one of my favorite films of all-time: Being There, written by late author Jerzy Kosinski (The Painted Bird, Steps) and directed by Hal Ashby…and this scene…Peter Sellers…absolutely brilliant…

“Laugh as much as you breathe and love as long as you live.” – Unknown

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6 Responses to “Life…is a state of mind” – Ben Rand, Being There

  1. ben says:

    All of the aims you have pursued will be realized.

  2. Dani says:

    Mark, I so enjoy your posts. I recognized a lot of our own journey in yours. My husband was on dexamethasone, too, and when his dosage was higher he, too, experienced sleeplessness, euphoria, and a concerning amount of energy. I say “concerning” because I was exhausted at the time and he was bouncing off the walls. At one point, he wanted to capture the brain tumor cells and put them into capsules and market them because he felt so vibrant, so alive, as if his brain was firing on all cylinders (when previously he felt it was only firing on part of them). I stood there with my jaw agape, speechless. It took my 18-year-old son to ponder that while some people might enjoy the euphoria he was experiencing, few of them would enjoy paying the price to have the tumors removed. At several hundred thousand dollars a piece, he felt the market for brain tumor capsules was premature. After I recovered from my initial panic, I finally broke down and laughed. My husband was experiencing the swings of mood that the dexamethasone and other drugs can cause, and while it caught me quite off guard, it occurred to me that this was one of the most “naked” times I had experienced with my husband. He was emotionally, mentally, naked. This cancer has given him a vibrancy that I never witnessed in our 20+ years of marriage. It is much like a rose blooming at the end of its life. I have never loved him more.
    The swings of his mood later stabilized and his sleep patterns returned. I hope yours will, too. His exhaustion from weaning off the decadron was scary, but that, too, was a passing phase. Your daughters and wife are seeing you in a whole new light. You are a warrior. You are a victim. You are vulnerable. You are invincible. You will be strong, and weak. I wish you the best in cheating death, but moreover, I wish you–as I wish my husband–the ability to see all you have brought to those around you. You guys are heroes, especially to those of us closest to you.
    Everyone has their imagination of what lies beyond. My husband’s mom, his dad, his sister, his aunts and uncles, grandparents, a few friends and his favorite red sweatshirt are already “there.” Surely you have loved ones who have already traveled this road, too. I’m hoping he’ll hang out here with me, but I know he’s loved “there” too. And dang, I’ve heard enough about that red sweatshirt that I know he’ll be tickled to see it again. When the truth comes out about it’s demise at my hands, there will be thunder and lightning, I’m sure! : )
    I promise you, you now have a clarity you’ve never been given before. That is an advantage in your fight. And remember, many of those statistics are people over 70 who had tumors in critical areas where complete resection was impossible. Some of them discovered their tumors because of accidents from seizures, of which the accidents left them compromised. Some of those folks gave up early. You have some advantages that those numbers might not reflect. If just one researcher has an “Aha” moment, it could be a game-changer!
    Lastly, kudo’s to your daughters for starting support groups in school and to you for helping them! What a wonderful idea! Your hero tendencies are apparently genetic!

    • moosevt says:

      tears and laughter here… such a gift Dani…those brain tumor capsules…yes! wishing you and yours love and hope and happiness for the roads behind, roads being traveled and those ahead…

  3. Mike Ruse says:

    Mark – perhaps YOU will be the man that others will look to when they themselves travel this washed out road as you now are. Be the grader for the road – because you write very very very well. I wouldn’t dare say I “enjoy” reading your musings, but – well, I do….you know what I mean. If anything – I am always a little more grounded in terms of my own selfish “problems” – and always much more educated. I also get angry – because you’re one of the few people I know who prior to your diagnosis and right in the middle of it, have always been such a positive guy – and it irritates me to no end why this is even a part of your world (or anyone’s for that matter). Anyhow – always wishing you well.

  4. Tammy says:

    HUGS! You are amazing Mark!

  5. Nina Lynn says:

    Thinking about you often Mark and so enjoy reading your words of wisdom and courage. Nina

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