“It’s a complete catastrophe!” – Nigel Tufnel, Spinal Tap
There are those who look at things the way they are, and ask why… I dream of things that never were, and ask why not? – Robert F. Kennedy
“By one United Nations estimate, about 40 percent of the world’s population — 2.6 billion people — does not have access to a toilet. Open defecation leads to contaminated water and diarrhea. About 1.5 million children die of diarrhea every year.” 9/26/11 – New York Times
Talking over dinner recently at Putney School with a few colleagues, I shared that “sometimes I feel guilty about having cancer. There are so many with so little, living under such duress. Rape, poverty, hunger, war, crime, drugs, disease, environmental devastation both natural and man-made. I’m alive. Shouldn’t I simply be forever grateful for that?”
Ken’s response surprised me. He, being a mindful, inquisitive soul, immediately replied “yes, Mark, but you are thinking on the macro. We cannot always live our lives on the macro and ignore the micro-level realities of our own struggles.” I suppose it’s what you do with those struggles, how you let them manifest. The struggle between the body, mind and spirit can wear you down if they are all at war. Alas I supposed that is one of the ultimate quests, to find that balance, that center. And now I carry a permanent backpack filled with heavy metal. Plutonium, ironically being radioactive, is the world’s heaviest metal with an atomic weight of 244 Ar, followed by uranium at 238 Ar and lead at 207 Ar.
It has been three months since the landslide. August 1st I was hospitalized. August 2nd I had my first surgery to remove the tumor. On September 6th a second craniotomy to remove residual tumor and as of next Friday, 11/11/11 which happens to be National Heavy Metal Day, I will complete my six-week course of radiation.
(I am enjoying the heavy metal connection. For a great portal into this musical phenomenon check out Penelope Spheeris’ The Decline of Western Civilization, Part II: The Metal Years)
My head is now shaved as it was beginning to look as if my hair had been gnawed by rats in my sleep. (this happens all the time). I feel like Walter White from Breaking Bad or a nephew of Shel Silverstein.
My headaches have worsened and fatigue has kicked in but it really has not been as awful as I had been warned. I look forward to tapering off the pain medication and steroids which help reduce the swelling of my brain as it absorbs the radiation. Generally speaking, my range of emotions at this three-month juncture, range from empowered, at peace, emboldened, supercharged, terrified, deeply sad, very rarely angry (what’s the point?) deeply happy and deeply blessed by the love of friends, family and community. Most of all, my hunger for life feels insatiable.
In December I will have my first post-surgery/radiation MRI which will help determine if there is visible tumor left. I will receive an MRI every three months as we keep a close watch on additional tumor/cancer cell growth. Brain cancer is tricky because chemotherapy normally does not work because of the legendary blood-brain barrier, a brilliant construction to help protect the sensitive brain from foreign substances. Options are extremely limited. I could endure more surgeries if necessary but of course this is not ideal. I have communicated with brain cancer survivors who log the dates of their multiple brain surgeries like hash-marks on a fighter plane, symbols of courage in the war against this cancer. But they also equal more trauma, more digging and more side-effects.
Brain cancer, when it starts in the brain, stays in the brain, (like Vegas) sometimes moving to the spinal cord. Other cancers can be “cured” by removing the entire organ or at least the part that is cancerous. Removing my brain, or parts of it, is not an option at this point although friends and family might not notice the difference. This aggressive cancer will lurk. Cue up the Jaws music.
The landslide includes not only the physical and emotional debris but the additional challenge of absorbing and synthesizing the storm of information both solicited and unsolicited. I welcome any and all input because in the end, I believe all dialogue is good. Communication, even when clumsy, is better than none at all.
Some musings on this. There have been many powerfully emotive moments when someone shares, heartfelt, in the abject sadness and fear we are experiencing out of sympathy for what is a deadly disease. There are mutant cells running amuck in my head and we are trying to kill as much as we can before they kill me. Nasty buggers they.
Some will respond to this awkward reality by expressing the very real notion that in fact we are all dying. But, time and time again, I tend to believe the opposite. “No, actually, I’m living.” Some days I feel more alive than I have ever felt in my 44 years. I breathe deeper, my vision seems more acute. Frankly, it’s a very bizarre sensation.
When I really dig down into the stark reality of facing death, I am stopped in my tracks. My stomach drops like a stone. The air leaves my body and I feel like melting into the ground. Flashes of my daughters, my loved ones, friends, family, places all scroll at high-speed before me. It can be a harsh reality check. But, while yes, I might be dying at the cancerous, cellular level, I am living as never before. I have chosen to toss statistics out the window. It has been some of the best advice. One of my favorite quotes from Dylan’s It’s Alright Ma, I’m only Bleeding: “He not busy being born is busy dying.”
Of the two idle, well-intentioned, innocent, oft-repeated but seemingly flip comments I hear most often which can feel like bamboo splints under my fingernails are “Well, we are all dying and we will all die of something eventually.”
The other is, “well we never know what will happen. We could be hit by a bus tomorrow.” Of course at the most fundamental level this is true. But most of us, fortunately, are not handed a decree so soon that our lives may be cut short by such a crappy, incurable disease. Indeed, while we could in fact be hit by a bus tomorrow, most of us are not standing in heavy, bus-laden traffic 24/7.
I live in a remarkable community with quite literally hundreds of practitioners of health. Western, Eastern. Northern. Southern. Years ago I wrote an essay for our local food-coop entitled “Whole Lotta Healin’ Goin’ On” in which I catalogued the multitude of options available. A local review of the local bulletin board reveals a plethora of medical alternatives. There is so much to learn, to try. And why not? I will swim in any pond and believe in taking myself out of my comfort zone whenever possible. You never know what new light you may find. Nothing has ever been advanced without experimentation. And hell, if it works for you, who am I to judge?
That said, learning how to live with cancer can be bewildering, frustrating, confusing, aggravating, irritating, and can downright make you crazy. What do I do now? What do I eat? What do I drink? What shouldn’t I do? What should I do? The books, the CD’s, the podcasts, the healers, the spiritual meccas, workshops, compounds, retreats, etc. ad nauseam.
A dear friend and cancer survivor shared with me the same overwhelming experience. “I was trying to decide what form of treatment to undertake, I felt like I was in a coat room with each of the hooks a different therapy talking loudly about how I should hang my life on their hook. That their treatment was the most effective and hopeful for saving my life. I found it excruciating.”
Her sage advice to me, as I find myself swimming in a sea of potions, elixirs, herbal remedies, tonics, new age therapies all promising to be “the cure” was quite simple, profound and poignant and has helped me immensely as I find myself most annoyed by this aspect of facing this disease. I cannot help but sense complete garbage as the commingling of commerce and cure-all claims, with no basis in fact or reality, only creates science-fiction health, preying on the vulnerable, with an underlying and often sinister profit motive. Patent medicine is alive and well, it’s just packaged differently and costs a lot more.
My friend shared “what I came out with is that I believe that each of us needs to learn the fine and delicate art of really listening to our systems – our hearts, minds, bodies. If something calls to your heart, I’d recommend that you give it a try, not expecting a cure but watching carefully for what, if anything, it might be doing to alleviate your experience. I don’t know how else to walk these paths. I felt that one invaluable lesson I learned from cancer was to quiet and listen to my body and heart. Leave the mind’s chatter aside. It’s the body and heart that have important messages to which we need to learn to attend.” Amen.
This week’s Science section in the New York Times featured a beautifully written article by Denise Grady “A Tumor is No Clearer in Hindsight” on Steve Jobs and his decision to put off surgery to his cancerous pancreas, start a vegan diet, juices, herbs and alternative therapies. She writes “…there is no way in this life to know what might have been — not in politics, baseball, romance or the stock market, and certainly not in sickness and health. Mr. Jobs’s wish to avoid or delay surgery was not unusual. And given the type of tumor he had and the way it was found, his decision to wait may not have been as ill-considered as it seems at first blush.”
Steve’s decisions were personal and for him to make and us, being the public, know only a fraction of the truth. Who are we to judge? We will all follow our own paths.
I will continue to eat well, exercise more and listen deeply to my heart, mind and body and follow paths which may or not help fight my cancer. Some may work, some will fail. My meditation practice, and it is just that, “practice,” has already moved me forward in a way I have always desired but never stopped long enough to give it a try. So for the first time since Quaker school, I am finding my inner-peace through silence and meditation. This is no elixir.
I leave you with a few additional items if you so desire and have the time. (“If You Have the Time” is also the title of another excellent blog by fellow brain cancer survivor Matt Cotcher)
“To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.” – Jim Valvano
The legendary basketball coach Jim Valvano’s ESPY acceptance speech, (11 mins long) delivered only months before succumbing to bone cancer, closed with “cancer can take away all of my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul. And those three things are going to carry on forever.”
…and Ian Dury and the Blockheads, “Reasons to be Cheerful, Part III”
And in the music trivia department…the origin of the using the term heavy metal in popular culture can be traced to many sources including the great William S. Burroughs but the first mention in song is attributed to a reference to a motorcycle in this Steppenwolf song…”Born to be Wild” (@44 seconds)
Heavy Metal Thunder…baby!