Wednesday, March 11, 2015

Confronted With The Impossible

Being confronted with the impossible 
makes us ask unexpected questions. 
Emilie Conrad, founder of Continuum Movement

I did not think I'd live long enough to ask some of the questions I'm asking these days. It's been five years and a few months since I was diagnosed with cancer and told that I would most likely die within two years. I'm living outside the realm of probability and therefore, inside the realm of possibility, and within this mysterious domain I am confronted with a deluge of unexpected questions. I am living proof of the unfolding of Emilie Conrad's statement.

Before I launch into philosophically pondering some of these unexpected questions, I need to fill you all in with some current events. I've been somewhere between unwilling and unable to blog, post on Facebook, or talk about myself publicly for quite a while. It is exhausting living life under scrutiny. It's tricky to find the balance between my need for privacy in order to maintain and support my inner state of equilibrium and inquiry, and the desire for a wider web of connection. Before I engage in public disclosure, I have wanted to understand what need I am meeting by sharing with you all. I am feeling the tenderness of exposing my fragile being, and an organic sort of shyness.

I don't mean social or emotional shyness, the feeling of self-consciousness when looked at, although I have to admit to feeling a little of that. My shyness is not personal; it is more like the expression of shyness that we find in the natural world - the way a bird is scared off by staring at it, or the way animals in the wild run and hide if they know you've spotted them.

I value privacy, and yet I feel that there needs to be a balance between privacy and sharing, otherwise those private moments can seem isolating. In writing to you all I get to choose what to share and when to restrain disclosure. I'm not trying to create a public image; I'm searching for the balance of information that helps me feel expressive, connected, and understood, while also respecting my own guardedness of my vulnerability.

In this blog entry, I’ll address the following “external” questions that have come from emails from blog readers since I posted last. Sometime soon I hope to write to you all and dive into some of the internally generated “unexpected questions.” 

My PET scan, which was done in December, shows no new cancer activity. My tumor markers remain low. No one really knows what it means to have cancer that is “metabolically inactive.” It’s just a finding on a test, not a literal description of what’s happening in my body. We know it’s probably not growing or actively spreading. Cancer cells could be circulating in my blood and traveling throughout my body, but we don’t know how to accurately measure this. For now, it all seems to just sit there sleeping. It’s not gone, but it’s also not doing much. Do I tip-toe around in my life trying not to wake the sleeping dragon? Or do I ignore the inert mess inside my bones and plow ahead? I’m always listening for clues and although I can’t say I know the answers, I am alive, and that is literally living proof that I’m on the right track. But as Will Rogers said, “Even if you're on the right track, you'll get run over if you just sit there.” I try not to sit too much.

My bones that have/had metastases growing within them are remodeling, and it’s not clear how much of this is a good thing or not. My clavicle and ribs are changing shape and the outer rim of bone is thinner with more scar tissue in and around the bone. In some ways, knowing this I feel more fragile. I’m afraid to walk outside alone in this icy winter wonderland for fear of falling and breaking. No one can definitively say if I am exceptionally aware and I’m being appropriately cautious, or if I’m being overprotective of myself. I walk the fine line between heightened awareness and paranoia.

The side effects of the anti-estrogen medication I take daily (and am still encouraged to take for the rest of my life) continue to wreak havoc with all my muscles, tendons, and joints. Almost everything hurts all the time. It’s a full-time job filtering out pain from my daily perceptions without losing other vital information from my body, people around me, tango partners, and my environment. But it’s what I do, because it’s preferable to taking pain medication. How do I cope with chronic pain? These are some of my avenues of relief: I breathe, I rest, I meditate, I have a glass of wine, I practice Continuum, and I tango.

Tango doesn’t actually provide relief (yet, but I’m hopeful), just distraction. When the dance becomes fluid there is tremendous pleasure, but at a cost. It has taken almost a year and a half to begin experiencing these few precious moments of fluidity without pain, effort, and concentration. The strength I have had to develop to be able to dance has been hard-earned. I not only suffer from the soreness of using my body in new ways, but from the compensation I have to engage to dance with my upper body in such disarray. I hurt if I stay home and do nothing, so I’d rather hurt somewhat differently and be dancing.

I have been mysteriously drawn (ok, it’s not so mysterious) to a dance that relies on awareness of my sternum/heart, but my sternum is as thin as an eggshell, filled with the remains of tumor and scar tissue. My heart is heavy as I carry the sadness of the life I have had to give up, the sadness of my mother who died from ovarian cancer at 53, the sadness of the world. My third rib on the right doesn’t attach to my sternum and it grinds and pops with every ocho (a tango step) and torque of the embrace. 

It’s not just my chest and ribs that hurt, my neck and upper back are literally holding on for dear life. I have constant pain and frequent spasms, especially with movement of my arms. Both hands become numb and tingling if I hold anything or anyone too hard for too long. 2 of the 4 places in my pelvis that have "suspicious lesions" ache all the time, especially after walking backwards. I have migratory intermittent flare-ups of my feet, ankles, knees, shoulders, elbows, and wrists. My hips remain the only joints in my body that work fabulously! I have a faint hope that these things might get better with use, since my feet, which were horribly painful 2 years ago have significantly improved.

As some things have somewhat improved, my left hand, in particular, is rapidly getting progressively worse. The joint at the base of my thumb is destroyed, and the one next to it is starting to degenerate also. The trapezium bone and its former ligaments are just a blur on an x-ray. The thumb metacarpal is dislocated, because the joint is gone – there is no location for it to be located anymore. I have 2 large osteophytes (bone spurs) one of which has broken off and is floating in the mess in my palm. I have minimal use of my thumb. I can only grasp with the other 4 fingers.  The good news is that I’m alive and hope to be so long enough that I’m considering a surgery (sometime before September) that will restore the use of my thumb. I would be in a cast for 3 months, which seems simultaneously unimaginable and like it might be a reasonable tradeoff, if I get the use of my thumb back. I’m sitting with a big decision and waiting to be clear about what to do.

Pain reminds me of the preciousness of life and the temporary ability we have to dance. I know that everything I’m learning is ephemeral. I will eventually have to let go when I lose my ability to move in this way. Is this heart-wrenching melodrama? Or is this this being a realistic human? Regardless of how young and strong and healthy you are, unless you die suddenly one day without warning, you will eventually lose the ability to do certain things. I know that my window of opportunity will eventually close. As I get in touch with the imperative of my desire for a last chance to learn this dance, I accept that some day I'll let go of being able to dance. This highlights the preciousness of it.

Life in Vermont continues to be great. I love all the seasons – all 7 of them: winter, sub-zero, mud, spring, summer, fall, and stick (after the leaves fall but before it snows). I love the variety of so many distinct times of year. So much of my life has been in monotonous weather, in Florida and California, that I welcome the variations. I could do without this much sub-zero weather, but I still prefer being too cold to being too hot. We are cultivating a rich circle of friends and innumerable opportunities for art, entertainment and other aspects of culture. We get our "urban hit" by going to Montreal. Steve’s practice is thriving. Life here requires very little time in a car. As a former Californian, I still haven’t experienced what Vermonters call “traffic.” The lake and the mountains easily satisfy whatever gap was left by moving away from the ocean. Although the lake has frozen all the way across to New York, and it’s covered with walkers, skiers, and ice fishermen, I still find it disconcerting to walk even a few feet from the shore. I’m thrilled just to gaze across the frozen expanse towards the Adirondacks on the other side. (Since I wrote the first draft of this entry, I finally cultivated the courage to venture way out into the middle of the frozen lake. It was like walking on the moon. Amazing!)

I am still grieving the loss of our beloved Emilie Conrad to metastatic lung cancer last April just shy of her 80th birthday. Our loss has catapulted the Continuum community into chaos and “creative flux.” In the midst of this painful reorganization of the Continuum community, I remain committed to my own practice, and to teaching at Kripalu this coming July. Here’s a link:
Please consider coming. I’d love to have you all there. I have created a workshop that feeds me and that I can do once a year, but I could not fathom being able to do more, or to teach on any regular basis. Sorry, but I have no other plans to teach right now. I continue to write, thanks to Dragon voice-activated dictation, but no book is looking like it’s close to finished.

For my Osteopathic colleagues, if you’re wondering where you might see me this year, Steve and I will be attending the annual ASSSG course in Great Barrington, MA this April and the annual Osteopathic Cranial Academy conference in Naples, FL, where I am so looking forward to introducing Hugh Ettlinger as this year’s Sutherland Memorial Lecturer. I’ll also attend the Montreal International Osteopathic Symposium in May. The new highway is finally completed in southern Quebec, which makes the drive to the Osteopathic College only about 1 hr and 45 minutes from home. I can’t imagine being able to travel alone, so it’s great that we can both attend these events this year.

And to answer the last of the questions I’ve received from many of you, “what did we have for Thanksgiving this year?” all I can say is that it involved a trip to Montreal and cheval (everything sounds better in French). I hope this doesn’t upset some of you like the Easter Rabbit and Christmas Reindeer dinners did. We were blessed to have both my step-sons here in Vermont for Thanksgiving and we wanted to have something new and make it memorable. (For a history of our novel Thanksgiving menus, see 11/24/09 and 11/17/10 blog entries.)

What are those unexpected questions I’m asking these days? How do I live with cancer and not take it personally? What's the relationship between tango and Continuum Movement? Can I immerse myself in contradiction until there is no duality? I have no answers to these questions, but I will share my thoughts on these and other questions in the weeks to come.

I'd like to leave you with a poem from Mary Oliver, from her book American Primitive (1983)

To live in this world you must be able to do three things: to love what is mortal; to hold it against your bones knowing your own life depends on it; and, when the times comes to let it go, to let it go.