"Whatever takes us to our edge, to our outer limits, leads us to the heart of life's mystery, and there we find faith."--Sharon Salzberg

Thursday, June 24, 2010

What Now

The only way to make sense out of change is to plunge into it,
move with it, and join the dance.
Alan Watts

I'm now in my third week post-chemotherapy and happy to report that my energy is returning with each passing day. I wish I could say the same for my hair, which has moved into the Chia Pet stage. As a result, I have developed phantom hair syndrome. This is where my hand reflexively moves over my scalp to brush back an imaginary mane. While the current style is perfect for our recent 100 degree days, I'm no longer interested in trying to tan my scalp and I long for the natural cover of my graying hair.

I have also ended my three month "sabbatical" and returned to work. This has been the longest period in my adult life of not reporting to work on a daily basis and I have to say it was a mixed blessing. While I appreciated the ability to rest when necessary, grocery shop during times when it was only me and a few other senior citizens in the store, and plan and cook elaborate dinners for my hard-working wife, the idle time began to wear on my brain. I knew it was time to get back to work when I considered putting together my own world cup soccer team with our pets. It might have worked if it was not for our Great Dane's proclivity toward turning every toy soccer ball into a pile of stuffing.

As Kath and I move beyond the treatment phase, we have developed some new rules. The first rule is that we are no longer allowed to say the word "chemotherapy." Instead we refer to that whole period as the time I was visited by the Dementors, minus all of the Harry Potter wizardry skills. Another rule is that any physical complaint I make, no matter how large or small, must be preceded by the phrase, "I know it's not cancer." A recent example of this was during our trip to Atlanta to see our granddaughter, when I uttered the phrase, "I know it's not cancer, but I've really gotta stop and pee." Another rule is that anytime we find ourselves lamenting over the events of the last year, we have to immediately follow that with a gratitude list of all of the things that have gone our way and the many miracles we have encountered throughout this journey. Finally, we make sure that we routinely review the unbelievable support and love offered by friends, family and strangers and send out healing energy to all.

In addition to the above rules, Kath and I try to make sure we include some form of mindful activity in every day. This will often take the form of a qigong exercise that we find both meditative and uplifting. Other examples include mindful walks with the dogs, formal mediation in our "yoga studio," meditative music before bed, formal yoga sessions, healing bio-energy sessions and, of course, the ever-popular mindful meal with a great glass of wine. All of these serve to break the habitual tendency of the mind to move into the future and the world of "what's next?" This is incredibly important when dealing with cancer or any type of health crisis as the imaginary future extends not only ad infinitum but ad nauseam.

We have also accepted the fact that there is no going back to the "normal" life before the cancer diagnosis. I have only a vague memory of what that was like anyway. (I blame the anesthesia and pain meds for that.) We try to spend as much time in the now as possible and trips down memory lane are mostly about times with friends and family and perhaps some awesome meal shared.

It is with a sense of wonder, awe, and the occasional mini panic attack, that we head into the summer of '10. A summer where I will encounter my first follow up CT scan on July 13th and the epic crossing over to the big 50 on July 25th. But that's another blog.

Wednesday, June 9, 2010

Soul Survivor

Kathy and me at Relay for Life celebrating the
milestone of the end of chemotherapy

Suffering cracks open the shell of ego,
and then comes a point when
it has served its purpose.
Suffering is necessary until
you realize it is unnecessary.
Eckhart Tolle

I visited a colleague recently, a cancer survivor who works in the field of substance abuse recovery. I sought her advice on how to make the transition from active cancer patient to recovering survivor. My burning question was "How do you resume “normal” life while carrying the fear that the cancer might come back some day and you'll have to do the whole treatment thing over again?”

She told me a story about how she believed she had neatly put away her own fears and anxieties regarding her illness only to have them come rushing back when a friend wrote her a very poignant letter about her view of her recovery from cancer. "I realized that I had simply put my fears in a box and put duct tape around them, thinking the tape would hold. It didn't." She mentioned how she was freaked out when she tried attending a support group. "It was too intense and there was too much anger," she said. This was a shock, coming from someone well trained in 12-Step support groups (you should hear the stuff recovering addicts talk about, it could make Satan gasp). She went on to say how she realized she had to come to an understanding of what had happened on her own terms.

"What about people who say that cancer was the best thing that ever happened to them?" I asked, "That seems like a bit of a stretch to me." "That's the mind trying to put it in the box," was her immediate reply. "While I can say I have learned a lot through having cancer, I would gladly have learned those lessons in some other form," she added. "Yeah, it seems that what they really mean was that surviving cancer was the best thing that ever happened to them, I get that," was my reply.

"I wish I could tell you that there is a precise way to drop the fears and go on," she said with more than a hint of empathy. "I will tell you that when I finished my treatment I met with my oncologist and told him that I was tired of worrying about this all of the time so I was giving it to him to worry about. I told him it was his job now, that I was resigning." She said it didn't work completely, but it felt good at the time.

I thanked her as she handed me her business card. It had her cell phone number on it and she told me I could call anytime or stop by again. We hugged and said our goodbyes and I drove on to my appointment at the oncologist's office. Later, reflecting on our conversation, I realized that I had experienced the purest form of therapy: Two people sharing a deeply personal experience and being willing to avoid demonizing or exalting it to try to gain some artificial control over it. It was a true exchange of compassion. That mutual compassion is something that I have experienced repeatedly since my diagnosis. I realized that this might be the best thing to come out of my experience; cancer has been a bridge that has allowed souls to meet on common ground, hearts open.

Thursday, June 3, 2010

Good Grief!

He who learns must suffer.
And even in our sleep pain
that cannot forget
falls drop by drop upon the heart,
and in our own despair,
against our will,
comes wisdom to us
by the awful grace of God.

A very good friend, upon learning about the recent death of my father, sent the following text message, "You must feel like Job.” He was, of course, referring to the biblical character who becomes the target of a wager between God and Satan as to how much crap he can take before turning his shaking fist at the heavens and telling God to piss off. Without knowing it, my friend had hit the nail on its already pounded and sore head. I told him that I had just finished reading a book by the author Richard Rohr entitled Job and the Mystery of Suffering because I desperately wanted to know how Job managed to keep the faith.

I trace my own “Jobness” back to that cool November day last year when a routine visit to an Urgent Care center to have my shoulder checked out turned into the nightmare of "There's something on your x-ray that is not supposed to be there." Then it was confirmed that it was a tumor and not a smudge left by a careless radiologist. Not only was it a tumor, it was the kind that needed to come out. Next, the news that it was not the kind that could come out by way of laparoscopic surgery; it would require the Full Monty of thoracic surgery to neatly divide my chest in half. Then the pathology report came back with the news that it was not the benign friendly tumor that stayed encapsulated; it was the not-so-friendly kind that had invaded more borders than Saddam Hussein. Upping the ante was the news that the previous plan for "Just radiation that would be nothing more than a simple sunburn" was now going to be a full on assault of 30 sessions of radiation and 4 weeks of chemotherapy. This regimen was neatly summed up by a consulting oncologist this way, "You're gonna get spanked."

Needless to say, with this in our wake, (in the interest of brevity I left out some of the other lightning bolts sent our way) my wife, Kathy, and I left for Western New York for my father's memorial service feeling that life had become, as Winston Churchill once said of history, "one damn thing after another." I was certain that this final straw, of multiple final straws, would finally snap the ever-thinning thread of sanity I was clinging to and that the journey to my childhood home would be a grief-fest of Biblical proportions.

The problem with grief is that it comes out of nowhere. One day you're laughing and playfully dancing through life's meadow and the next day you're Dancing With the Stars who have been unceremoniously told that they have two left feet and no sense of rhythm.

So it was with great surprise and relief, or grielief,™ that I discovered that even during a Niagara of tears one could find peace. As I sat around telling stories about dad's passions, quirks and talents in the kitchen, I noticed that I was no longer thinking about cancer, chemo, radiation, blood work, or CT scans. Here, among family and friends, I was not a patient, I was brother, uncle, husband, son and friend. I routinely found myself smiling at the sense of calm this brought and silently prayed that there would be more of this in the future (minus the whole grief thing, of course). I was sure that I was experiencing what Thich Nhat Hanh refers to as the “miracle of mindfulness" a sense of well being one gets when totally engaged in the present moment, even if that moment is something the mind would label as upsetting.

Back home, the ups and downs of loving and missing my dad now mix with final chemo appointments, plans to return to work, chasing the dogs around, and all of life's other magic moments. However, I find that mindfulness techniques help me regain the sense of my deeper self by moving me into what Richard Rohr calls Job's "sacred suffering." This comes from no longer seeking the answer to why we suffer and instead allowing our suffering to move us into a closer relationship with the source of all life.