Wednesday, May 6, 2020

Wisdom Arrives On A Warning

Everything is unfolding slowly these days: the opening-up of society in this middle stage of the pandemic, my tulips, the plot in the book I'm reading, my own writing, and my ongoing relationship with cancer. I had a PET scan last Friday, and as is usual these days in so many aspects of life, the information it provides is not great and is somewhat confusing.

I got a preliminary result by email yesterday. I can't get a phone visit until May 13th here with my university-based oncologist, but I do have a video consultation with my "second opinion" oncologist at Dana Farber (in Boston) this Thursday, May 7th. I find it amusing that I will be getting my second opinion before my first. Life is turned upside down and backwards these days!

I don't have access to the actual scan to look at it myself, so I am dependent on the written report until I have my appointment on Thursday to clarify things. Here are the high points:

  • My breast tumor (my 10th one) is about the same size, but is not as metabolically active as it was last October. That means the cancer cells are dividing more slowly than they were.
  • I have a new "tiny" spot glowing brightly in my sternum - damn! 
  • My 3rd rib shows increased cancer activity - but it doesn't hurt anymore. Go figure!?!
  • They did not even mention my 2nd rib, which showed up on the last scan as a new place of possible spread. I have no idea if it stopped lighting up or if they missed it.
  • The lymph nodes in my chest are lighting up in the same way as they've been for a while. They are not in my lungs, just around the area of the upper chest. They seem to be processing something...but what, and why for so many years?
I am mostly feeling disappointed. I had hoped to prove the trend to be wrong, but there's too much evidence that something is going on to ignore it. I don't want to cross that fine line between positive thinking and denial. I am also wary of the other fine line - the one between heightened awareness and paranoia. I am committed to my practice of staying grounded in the present and not allowing my mind to make things worse than they are.

It's easier to stay present and be clear about choices when I'm feeling relatively better than I have in a while. Steve & I hiked up Snake Mountain, the highest point in the next county south of us last Saturday, along with our friends Patty and John, whose birthday we celebrated on the summit. It was 8.2 miles round-trip. It's the longest hike I've taken in 11 years! I bow to the spirit of the serpent, symbol of the movement of water on land, and the mythic representative of transformation. I shed my skin in tribute as I move through this time in my life. Thanks to John for having a birthday and giving me the reason to hike that day up a mountain named after my favorite symbolic creature.

It's hard to be afraid of cancer when I am feeling so much better. Way back at the beginning of this ordeal, 10 1/2 years ago, I felt horrible. Deep down, I knew that something was terribly wrong way before I was diagnosed. Now, I have to find a way to balance information, sensations, and my gut-feeling about what's happening. It's not easy finding this balance. I'm exploring ways to be with what's unfolding, and I'm immersed more deeply into uncertainty. I have some waiting (a most challenging practice) for my 2 appointments to move into some phase of making choices. I have a sense that nothing is happening quickly and that I won't be taking any drastic measures.

I listened to Krista Tippett's interview with Ocean Vuong this week (https://onbeing.org/programs/ocean-vuong-a-life-worthy-of-our-breath/) and was moved by so much of what he said. He described how "wisdom arrives on a warning" and I have chosen this as my contemplation for this very challenging week. We are all surrounded by countless warnings in these times. How can I discern the difference between wisdom, useless information, dogma, and propaganda?
What matters most right now?

Monday, March 30, 2020

Radical Embodiment In The Time of Covid-19

I ventured into the bowels of my local hospital this morning, Monday March 30th, for my 6-month follow-up scan. It was eerie being that out in the world, as if the zombie apocalypse had already passed and all that was left were a few abandoned cars scattered about in empty parking lots. I descended into the depths of the massive medical complex to the corner where cancer patients are injected with radioactive dye and wait in frigid, dark rooms to be scanned in a noisy scanner tube…but I never got that far.

At the registration desk, they told me my PET scan was canceled.

I was not only never notified, I spoke directly to someone in my oncologist’s office last week and we scheduled an April 1st follow-up tele-medicine visit to review my results. That person assured me the scan was on and that I would be contacted if there was a problem. When I didn’t receive my usual reminder call the day before the scan, I called to confirm. I spoke to a clerk and she connected me to the radiology doctor on-call, who told me that I was indeed on the schedule and she assured me that they would not cancel without contacting me…and yet they did.

I sat there at the registration desk feeling the heat rise in my masked face. My skin began to feel stretched so thin that I feared I would burst open. I felt so vulnerable. I was angry, disappointed, and frustrated, not to mention hungry and in caffeine withdrawal from the pointless fasting I did in preparation for the scan. I didn’t know whether to cry or yell, so I took a breath, thanked the clerk who was not at fault, grabbed the doorknob with a tissue, and ran to the deserted parking garage where I got in my car and cried. The magnitude of the social distancing in the cavernous garage meant that no one saw or heard me.

This is where my years of practice pay off. I can be patient and then I can wait a little more. I can wait for the emotional storm to pass, knowing that it is just bad weather and it will subside. I am thankful to be living with a non-aggressive cancer. I don’t fear that delaying my scan a month or 2 or even 3 will make that big of a difference in the big picture, even though I have had a bit more pain in my rib that has the largest mass of bone mets. M
y heart goes out to all those who have been recently diagnosed and need their scans and infusions and can’t wait until the pandemic passes. Life goes on during a pandemic, and so does disease. My gut sense is that mine can wait a bit.

Before driving home, I paused for a few minutes and dropped down into sensing how my body felt. I took a few breaths and exhaled for longer than I inhaled, and that allowed me to stay connected to my sense of Radical Embodiment. Why do I call it radical? Because what I learned in traditional health classes and "physical education" in school did not prepare me to deal with having cancer during a pandemic, but Continuum, Osteopathy, and meditation have given me those skills. These are all radical approaches to embodied living, ways of fundamentally changing the nature of something in a far-reaching, foundational, novel, and thorough manner.

Why do I call it embodiment and not mindfulness? Because I have come to not just believe, but experience that it is primarily through the body that we interact with our world, not through the mind. The body experiences things first, then thoughts happen. Embodiment is the conscious awareness of the many sensations that arise from inside the body that endow us with a sense of physical presence in the moment. Sensations keep us grounded because they only occur in the present. Cultivating a refined awareness of the many and varied nuances of sensations gives us a tremendous amount of information about our state of health, our environment, and allows us to choose where to put our attention, and what we need in order to care for ourselves more effectively.

Radical embodiment includes mindfulness; it’s not the other way around. Our silent-felt experience is primary, and mindfulness arises from the response to living that begins in the body and finds its way into awareness. Many people struggle with trying to access mindfulness through their thoughts, when it’s the body that holds the key.

Most people are oblivious of their bodies and take this amazing vehicle that carries them through life for granted. We don’t often acknowledge embodiment until something goes wrong, like illness, injury, or disappointment. Sensing what we feel inside our bodies increases self-awareness, self-reflection, self-regulation, and resilience. That’s what I needed this morning. I sat in my car and committed to my practice and my way of being in life. I felt my body respond and calm down with my prolonged exhalations. I felt the support of my seat and then decided that the sensation of the mask and gloves were no longer necessary or valuable and I ripped them off and tossed them in my plastic “contaminated bag.”

It's a strange time to be alive, but being alive is a good way to be. My body has the same basic needs and follows all the same rules, regardless of peace, war, or pandemic. Of course, I tailor the way I care for myself according to the necessity of the moment, but my body doesn’t respond differently because the governor told me to stay home. In fact, his directive has made me yearn for the wilderness. Since I can’t go on a trip right now, I can explore my own “portable wilderness”. I can discover the frontiers of my body’s wilderness anytime, anywhere. And that’s just what I did in the medical center parking lot before driving home. Sensing the wildness inside of my body refreshed me and readied me to face the rest of my day.

The fundamental basis of health is not the absence of disease, but the ability to adapt, and find ways to respond and adjust to whatever challenges we experience. Whether it is cancer, a paper cut, or disappointment, the body finds ways to repair itself as best it can, and then adapt to the new state of things. Health is not an object or a destination we will get to someday when the pandemic ends and things calm down. Being healthy is a work-in-progress, an on-going innovative, creative, adaptive process.

How are you creatively adapting to the state of the world right now?