Wednesday, September 9, 2015

I’m Great, But My Body Is Having A Hard Time

In Wendell Berry's poem, The Real Work, he writes,

     It may be that when we no longer know what to do
     we have come to our real work,
     and that when we no longer know which way to go
     we have come to our real journey.

It’s been another long stretch of time between blog entries and I’m starting to get emails and phone calls again from some of you asking if I’m okay. I like to answer that question by saying, “I am great, but my body is having a hard time.” I have definitely reached a new phase of no longer knowing what to do and no longer knowing which way to go. Here's my new conundrum...

This past March I began feeling worse, assuming it was the side effect from the anti-cancer, estrogen-blocking medication I was taking (Femara/letrozole). This is what prompted me to write the last entry, "Why Me?" Versus "Why Not Me?" I went off the medication and rather than feel better, I continued to get worse. It was apparent that there was something else going on. 

To make a long story short, I have been diagnosed with Rheumatoid Arthritis. My first response was, "really?!" This is an exasperated expression of shock. But it is followed by a regular, garden-variety "really?" which is an expression of momentary disbelief, followed by acceptance and curiosity. What is this new challenge about?

The twisted good news is that I have lived long enough with cancer that I have developed a new chronic disease! How ironic that I simultaneously have 2 diseases that behave at opposite ends of the immune spectrum. My immune system didn’t recognize and go after cancer, and now it thinks my own joints are foreign invaders that need to be destroyed. 

I am searching for ways to treat this auto-immune affliction. I like to think of it as a "reaction" more than a "disease." I spent 3 months trying all sorts of new diets, supplements, herbs, and alternative treatments, and I continued to deteriorate. I decided I needed relief and to halt what felt like a spreading wildfire before permanent damage was done. I went on a short course of prednisone and weekly methotrexate. After 9 weeks, I am beginning to respond to the methotrexate (which takes 8-12 weeks to kick in), with surprisingly no apparent side effects, and I am now weaning off prednisone. Prednisone is both miraculous and evil. I have great respect for its light and dark sides and hope to be off of it in a few weeks before I am confronted with any of it’s serious side effects. Over time, I hope that some of the other approaches, such as addressing my gut ecology, will support a remission or cure of this dreaded autoimmune arthritis.

I went back on a different anti-cancer drug. This time I am taking Tamoxifen, which has no muscle and joint side effects, and is thought to be just as effective as what I was previously taking. I'm not willing to stop taking an estrogen-blocker of some sort because 100% of women I have known with similar cancers that have tried to go off after 5 or 8 or 10 or 12 years and have had recurrences. I can't tell you if this is fear-based or just being practical. I'm not willing to find out, so I'm on Tamoxifen for now.

Even though I’ve been immersed in a health crisis since the spring, I have also managed to thrive, participate in the things I love, and find their therapeutic value. I somehow have managed to dance tango (even when I could only hobble for a 3 minute song before needing a rest), go to Kripalu, attend a silent retreat led by Jack Kornfield, go to the annual Osteopathic Cranial Academy conference, visit my brother, and take a day trip to Montreal. Steve and I did all of these things together. He has been amazing and with me all the way as we both explore how to move through life’s uncertainties. 

Leading a workshop at Kripalu on Transformative Self-Care was quite an energetic push. It was the workshop I really wanted to be taking. I taught it so that I could reap the benefit of having been a participant. I needed a few weeks to recover afterwards, but it was totally worth it! For those of you who want to join me next time, I'm offering it next year on Sunday, May 22 - Friday May 27, 2016. It's not listed on the Kripalu website yet, but it will be soon. I will post a blog entry as soon as it is open for registration.

Remaining curious about the paradoxical nature of my physiology, I can creatively cope with the challenges of my daily life. Perhaps in order to achieve balance my immune system has had to swing far in both directions. When I let go of needing to understand why and just explore what is, I find an unexpected vein of meaning. I immerse myself in contradiction until there is no duality. When I hold the reference point for these apparent opposites as the fulcrum of meaning, I can see that auto-immune reactivity and lack of immune recognition both share the same reference point - immune function. What if I shift my attention from the 2 ends of the spectrum, and move to the fulcrum that each malady shares? There I discover the power at the point of balance between these 2 states. I meditate in an open-ended state of inquiry about this each day, hoping for insight or relief. Like an Alchemist, I hold the tension of the two opposites and wait for the transformational (or should I say "transmutational") power to bring forth something new, an unexpected third state.

If only I could find a way to apply this practice to coping with my reaction to the predicament of refugees, racism, beheadings, police brutality, loss of privacy, the slaughter of Pakistani children, etc. The world is too big for me to take on. My heart is aching and my mind is baffled.

The final lines of the Wendell Berry poem I quoted in the opening are,

     The mind that is not baffled is not employed.
     The impeded stream is the one that sings.

I find these words encouraging. I don't have to solve the problems of the world.  I may no longer know what to do or know which way to go, but when I encounter a blockage of flow, I have an opportunity to be creative and find another way to allow my impeded life stream to sing.