Sunday, October 27, 2019

My Real Life Radical Embodiment

September 29, 2019
I thought I was no longer going to report my health status in my blog, thinking that my many subscribers don't need or want this much detailed information, but so many of you protested when I announced this, that I will continue to let you know what’s up with my health. To fill in the blanks, I am posting 2 emails I sent out to a few close friends, colleagues, and loved ones during this past month. I will (formally) go back to the topic of Radical Embodiment in a week or so, but this blog post describes my experience of real life Radical Embodiment better than any formal definition.

My periodic scans and tests (PET scan, CT scans, ultrasounds, tumor markers, and other blood work) are actually a test of my spiritual practice. Living with cancer is an exercise in relating to uncertainty. Then having tests that don't always clarify what's happening is another level of challenge. I'm the same person before and after the test results, but information feels like it changes me. I know that's a mental construct, and I try to be amused by the workings of my mind, even when I'm upset about cancer, potential decrepitude, and dying. "There I go again," is my mantra, when I find myself crumbling from the effects of abstract information on my mood. I am curious about how to dance with this situation.
"Not the high mountain monastery
I had hoped for, the realface of my spiritual practiceis this..."
as the Kim Rosen poem, Practice says.

I had my annual PET Scan on September 28th. My oncologist, and 2 radiologists don't know what to make of the scan:

Perplexing piece of information #1: My 1 breast tumor is the same size (1.4 cm) but it lit up more brightly, which should mean it's more metabolically active...but if it really was so, they say it should have grown.

Perplexing piece of information #2: My right 3rd rib that has been lit up for 10 years is glowing more brightly, as well as rib #2 above it. On previous scans they've both been lit up at some point. This activity seems to come and go - no one knows why. One radiologist thinks that if my ribs had metabolically actively growing cancer for 10 years, that they would have been eaten away perhaps it's not cancer. Garden variety inflammation can make things light up on a PET scan. We can send a man to the moon, but we can't tell the difference between arthritis and cancer on a $14,000 Scan!!! Good grief!!!

Here's perplexing piece of information #3: The lymph nodes in my chest (mediastinal, subcarinal) are not enlarged, but light up...which they almost always do, but once again, a little more brightly on this scan. My breathing is fabulous and my lungs sound and feel clear. Hmmm...

Perplexing piece of information #4: None of my other 9 places of bone metastases light up. When cancer wakes up, it often does all over at the same time.

I spent the late afternoon in the University of Vermont medical center. and I had my oncologist, and 2 radiologists looking at all my scans and everyone had different opinions, which shows what an exact science this is ;)

Here's the plan:
1. I had blood drawn to see if any circulating tumor markers are elevated in my blood.
2. I'm having a breast ultrasound next week to more accurately measure the size of the breast tumor. It's been a year since we measured it last by ultrasound, and at that time it was smaller than the time before. A PET scan is a notoriously inaccurate way to measure tumor size.
3. I will repeat the PET Scan in 3 months.

My gut feeling is that this is nothing...but what do I know?! I got fooled 10 years ago when this all took me by surprise. I am humbled by my inability to accurately predict what's happening here.

Once again, I surrender to the curriculum of the "advanced course" of my life. I am the same person today as I was before the scan, and I feel the best I've felt in 10 years. Right now, that's the piece of information on which I choose to put my attention.

October 26, 2019
Progress is a funny word in the realm of cancer. Most people think of the word in a positive light, but in cancer terms, it refers to "progression of disease." They make the disease the reference point, as opposed to the health of the person. In Osteopathy, we quote the founder of our profession, who said, "The object of the doctor is to find health..." I have to remind myself of this when I enter Cancerland (that's what I call the oncology department.)

We usually think of the word "negative" negatively, but in cancer testing, it's good to have a negative result. I am amused by the paradoxical lexicon of living with cancer. It’s a good thing that I am so easily amused because my life is full of paradoxical challenges right now.

I was deeply inspired to write Friday morning...and then the phone rang. Cancerland called with a last-minute opening for a breast ultrasound. I took it, instead of waiting until Monday for my scheduled appointment. So much for inspiration! I spent the remaining pre-appointment part of my day rolling on the floor, doing Lunar breath (you Continuum folks know what I mean...and the rest of you need to take a Continuum workshop so that you too, can practice this extremely valuable way of breathing.)

Ok, I don’t want to tease you, so here is the instruction in a nutshell:
Breathe in normally and exhale with the whispery sound of "ha." Now breath again, but this time when you exhale, close your mouth, allowing the air to exit your nose, and still imagine you're whispering "ha." This is the Lunar Breath. I also like to imagine that I am fogging a mirror on the back of my throat when I prolong my exhalation in this way. It's soft and gentle. It is NOT Ujjayi breathing from yoga. There should be no use of force or constriction in the throat. Most people find it supremely relaxing. (There is an urban myth that doing it can make you invisible. Emilie once forgot her passport at the Canadian border and did Lunar breath while the border guard managed to not see her sitting in the back seat of the car. Emilie could pull off things like that!...sorry, but I digress.)

My breast ultrasound is hard to interpret, like everything in my life these days. The radiologist says that my boob-buddy (sounds better than "tumor" or "mass") is very irregularly-shaped and hard to measure. It seems a little bigger to her, but she says it's tricky to measure such an oddly shaped blob. “We could be looking at a diagonal this time, which makes it seem bigger,” she tried to explain. It seems only about 2-3 millimeters bigger, but it could be the angle. So much for science! The take-home message here is that it isn't smaller. My disappointment feels like the floor dropped out from under me and I’m sinking in deep dark water. I am fortunate to know my way around deep dark immersion.

My tumor markers (from a blood test) are normal-ish - on the high side of normal. More inconclusive results - ugh! I need to test them again in 3 months to see if there's a trend. My next PET scan in on Jan 27th. It will be helpful to see if there's a trend 3 months from now.

I am waiting to speak with my oncologist. I have a gut feeling that I shouldn't accept that my cancer has made "progress" and wait to see what the January repeat of my PET scan shows. If it looks like a trend, then I won't fight with what reality seems to be. Nothing happens fast with my type of cancer, so I think I can take a few months to see what unfolds.

From where I am now, I am not sufficiently convinced that a few millimeters should define a trend that would make me sign up for a monthly injection of a new drug (Faslodex) for the rest of my life. That would be the next step if I decided to do a different treatment. It would literally be a pain in the butt. It gets injected into the butt muscles and it has to be done monthly in a hospital, even though I am capable of injecting myself. It's a fancier form of what I've taken orally for the past 10 years, that blocks estrogen receptors. It seems to work well in many women who stop responding to oral estrogen blockade. It has a lot more side effects.

Cancer is smart and evolves to adapt to the low-estrogen environment. It figures out new ways of growing when it’s deprived of its favorite fuel. So, until I am ready to switch my treatment medication, I will meditate on how this situation can evolve differently. I like to think of myself as a highly adaptable person. But how can I evolve without the cancer adapting to its new milieu? This is where the relationship with cancer gets tricky. I don’t want to take an aggressive warlike stance. But I want to outlive the metastatic trickster. How can I be in relationship to something I want to get rid of? This has been my decade-long inquiry, which is expanding now that the plot has thickened.

Life goes on, and it's my practice to find my way back to that inspiration I had yesterday morning amidst the distraction of scans and tests and the uncertainty of cancer progress. Many of you have been in workshops with me in which I ask you to bring your attention to a problem, an illness, injury, or something that you wish would be different in your body, and then I ask if you can feel the longing to feel better, the yearning to be cared for, and drop the object of your negativity. I find this exercise in perspective profoundly helpful right now.

My body is part of the natural world and what’s happening is being guided by the laws of nature. I’m not being singled out and punished. Nature is just doing its thing in this crazy world of ours. How can I support nature to express itself in my body like I do in my garden? I want to selectively cultivate flowers, not weeds, so I adjust the soil, the water, and what I feed the plants to alter their behavior. How can I do this with my body and the cancer that grows like a weed within me? How can I listen more deeply to my bones and discover what they need?

Writing helps me find the longing to live and express myself so that I can connect with other people. Love is a not-so-secret ingredient.

with gratitude for all your love,
I couldn't do this alone,