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 already...so 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,
Bonnie

A Decade Of Unexpected Life

I have a visceral memory of my 53rd birthday. It was 2009 and I was at an Osteopathic continuing education course on “The Anterior Midline” taught by Elliot Blackman, DO in San Mateo, California. Ironically, my anterior midline, my sternum, to be exact, was red hot and bulging. I could barely move my arms. I couldn’t carry my treatment table or my suitcase. I ached all over. I was severely fatigued. I knew something was gravely wrong, I just didn’t know what it was yet. I suspected something like multiple myeloma or some other blood disease that was causing my bone marrow to expand. 

Little did I know that breast cancer had spread through my bones. How could I have known? I had a normal mammogram. My nine breast tumors were not palpable. Nothing else that medicine knows how to measure was abnormal. 

My mother died when she was 53 from ovarian cancer and I had walked around for a few years prior to my 53rd birthday feeling like something might happen to me soon. I thought and felt that, “something was terribly wrong”. Was I caught in my mother's history, or was that a sensation or a premonition? After years of medical screening, therapy, and deep soul-searching, I could only conclude that I was working too much. I was happy, and I loved the work I overdid. This pain was out of proportion to what seemed like the mundane stressors in my life. It was out of proportion, because it wasn’t just about stress, my work, or my mother, I was feeling the fast progression of Stage 4 breast cancer.

I am on the verge of my 63rd birthday, a day I did not think I would live to see. Some say it’s a miracle, but ten years have passed, one day at a time, and from my perspective nothing miraculous happened. There wasn’t a moment with a fanfare of trumpets or mystical voices. No prophetic dreams. I just wake up each day devoted to staying present as best I can, so that I can sense the necessity of the moment. I have had to cultivate curiosity and not panic or dwell on the terror and fear of suffering and dying. My day-to-day survival depends on my ability to be present, tolerate uncertainty, and make good choices. I have been blessed and privileged to have great mainstream, alternative, complementary, and Osteopathic care, wonderful friends, and the resources to care for myself as a full-time job. I couldn't have lived this well, for this long alone. My life is filled with love, the love from friends, colleague, students, patients, family, and especially my beloved husband Steve, my step-sons Luke and Ben, and Ben's wife Jenny. All of this adds up to look like the miracle of living 10 years with cancer and continuing to thrive in the midst of it.

Up until now, this blog has been a way for me to let you all know how I’m doing. This was especially helpful during the first year or two after my diagnosis, when it was impossible for me to respond to the hundreds of people who wanted to know how I was doing. I couldn’t bear to keep repeating my status and report my test results. That necessity has passed and it’s time to re-purpose my blog. I have always written philosophically and poetically about a wide variety of issues, but each time I try to post something, I struggle with the “Health Update” aspect of the blog. It’s time to make a change.

I opened my book, Engaging The Movement Of Life this morning, looking for an inspiring quote as a warm-up for this blog and a workshop I'll be leading soon. I randomly flipped through the pages and my eyes landed on this paragraph,

“Reverence for the relationship between the known and the unknown continues to expand and contract, like my breath. Moving from part to whole, from detail to big picture, from movement to stillness, the territory of exploration is endless. Living life in a spirit of inquiry is far more fascinating, fruitful, and satisfying than any of the specific answers to questions. The known world expands exponentially as I become willing to enter this inquiry, informed by my silent, felt experience.”

I accept the uncertainty of my life, and of life in general. Life is fragile, temporary, not subject to any of the rules of fairness, and naturally filled with surprising twists and turns. I don’t have to like what's happening to accept the harsh realities of what I face. This acceptance allows me to feel it in my bones and be deeply informed by the state of my body. There is part of life that I can explore and potentially understand. If it’s knowable, I want to try to know it. If it’s not knowable I want to bow to the mystery and move on. In embracing the known and unknown realms, I keep diving more deeply into an ongoing inquiry. In the midst of uncertainty I anchor my acceptance with inquiry. I am curious about my precarious existence and as I ask each question, another interesting thread of inquiry leads me towards the horizon.

(For more of my writing on living with uncertainty, go to: https://www.watermarkarts.org/portfolio-item/the-continuum-of-uncertainty-article/)

The spirit of inquiry has inspired me to search for a “Unified Theory of Everything.” The Unified Theory or The Theory of Everything in the study of physics refers to models that describe two or more of the four fundamental forces of nature previously described by separate theories (these forces are electromagnetic, gravitational, weak, and strong.) I am always looking for the biological equivalent of this sort of theory for human life.

Many years ago I began to weave a philosophy and a set of principles to guide me that applied to every aspect of my life. It seemed to me that there was common ground shared by aspects of my life that had become compartmentalized.

• I had a philosophy that influenced my sense of my body, but it shifted in different contexts. 
• I had one set of principles that guided how I cared for myself, but a slightly different set that informed how I exercised. 
• I had yet another set of principles that guided my internal life – my thoughts, my beliefs, my emotions. 
• And another that applied to matters of the natural world. 

As I move through life, I have found the common threads of connection in the story I weave in order to make meaning, and provide guidance about how to live my life.

No one way has ever satisfied me. I have explored many philosophies and approaches in an attempt to unify my worldview into one cohesive guide, but I see contradictions and inconsistencies in most philosophies, spiritual practices, exercise techniques, meditation practices, approaches to healthcare, and other attempts to prescribe a way of living.

• When I was meditating, I felt like my body was left out and not valued.
• When I was exercising, I felt like my desire to tune in to my silent-felt experience and deeply sense the unfolding effects of my efforts were not valued as much as my heart rate or my form.
• When I was cooking, I did not fully understand the relationship between my food, my community, the environment, and my health.
• When I was choosing healthcare options, I did not feel like my body was treated as a valuable part of the natural world.
• When I was out in nature, hiking in the woods, I felt like my activity was separate from the rest of my day.
• When I was in relationship with another person, I did not appreciate that being relatable is the same whether the relationship is between people, food, places, animals, or things.
• When I gazed up at the night sky, I did not know that I was a living part of the cosmos.

This new incarnation of my blog explores my creative life path to a unified theory of everything, uniting health, exercise, meditation, the natural world, nourishment, relationships, and moving through the world in all the many and varied ways that I do. What unites all these aspects of living is what I call Radical Embodiment. 

Radical Embodiment is the topic of my next blog entry.  Enter your email address in the Subscribe box, up above on the right, to be notified when I post each new entry.

Check my schedule for updates: https://www.bonniegintis.com/teaching/   

I am also a frequent contributor the Continuum Teachers Association blog. Check it out at: https://www.continuumteachers.com/blog

The Handless Maiden Has Foot Surgery

In 2010, shortly after being diagnosed with breast cancer, I found myself having hand surgery. I had struggled with numbness and tingling in my hands since age 10, and it only got worse as I got older, especially after 30 years of practicing hands-on Osteopathy. I assumed that I had carpal tunnel syndrome from repetitive microtrauma and overuse of my hands. I had tried everything alternative, and then after almost a year of rest due to my cancer situation, when I was feeling worse, not better, I decided to have surgery. 

Here’s a link to that blog entry from May, 2010:
http://bonniegintishealth.blogspot.com/2010/05/handless-maiden-explores-path-to.html 

My surgeon was surprised by 2 findings:

1. He found an extra artery inside my carpal tunnel. It was an embryonic remnant of the median artery. This artery that helps provide nutrients to the developing embryo’s hands usually shrinks and disappears by about the 9th week of life in the uterus. Mine continued to grow and supply my hands with blood flow. However, the carpal tunnel was not big enough to hold it without compressing the nerve next to it. Every time I used my hands and increased the blood flow, I felt numb and tingly from the compression.
2. I had an excess of extra tissue growth (like fluffy scar tissue) around my tendons and between the joints of my wrist. This was definitely a side effect of my cancer treatment.

Although my symptoms were the same as carpal tunnel syndrome, the causes were very different. He made some space around my extra artery and trimmed away some of the extra tissue that was clogging my carpal tunnel…and here I am 9 years later doing fairly ok in the hand department. 

However, my feet are now the issue. For the past 5 years, I’ve struggled with pain in the balls of my feet, with my right foot being significantly worse than my left. I blamed it on the repetitive irritation of dancing tango. Dancing in flat jazz shoes and hip-hop sneakers still puts excessive pressure on the front of the feet. I never danced in heels. In fact, in my entire life, I have never owned a pair of heels. Many tango dancing followers develop problems, especially neuromas, in their right foot from excessive pivoting. All of you tangueras know what I mean when I describe how a leader that leads too many ochos, molinetes, or calacitas can ruin the rest of your evening…as well as the next day, or 2 or 3. I assumed this is what I had. Once again, I was wrong!

After 5 years of struggling with the pain and the gigantic lump in my foot, I had foot surgery on 2/28. It went smoothly. It’s now 5 days post-op and I’m hobbling around the house in my walking boot. I haven’t needed any pain medication for the past 3 days. Last night I dreamed about dancing and hiking downhill (down has been more painful than up). I am looking forward to new pleasures when my foot is healed.

Leave it to me to have something "special" and different. It wasn't really a typical neuroma, which we had assumed. She (my wonderful orthopedic surgeon, Deborah Henley) removed a fibrous nodule (a wad of gristly scar tissue) larger than my thumb, right next to the sensory nerve in the ball of my foot between the 3rd and 4th toes (counting from the big toe as #1). Although she has removed countless neuromas, she has never seen one like this before. Neuromas are fibrous nodules that usually grow around the nerve, not in the space next to the nerve. Another mystery of my quirky body!

It is possible that it grew as a side effect of my anti-estrogen cancer treatment. No one knows why, but estrogen blockers causes certain tissues, like tendon sheaths and joint linings to thicken. So far, my research about whether or not anyone has found this oddity in other women on my same treatment regimen, has not revealed anything. I see the orthopedist on March 14th and I look forward to seeing what they found on the pathology report.

I have a very ugly little open-toed boot that velcros shut and is easy to get on and off that I will be fashionably sporting with warm socks until I can get my foot into a shoe. I call it my “dancing shoe.” I should be able to drive in a few days, which is a good thing, because I am planning on going to Kripalu for Robin Becker's Continuum workshop on 3/17 to dive into some serious rehab and healing. If you are free, sign up and meet me there!
Here's a link: https://kripalu.org/presenters-programs/coming-home-body-continuum-workshop

If you’re not free in March, maybe you can join me for my Kripalu workshop May 5 -10, 2019. Here’s a link to register: https://kripalu.org/presenters-programs/transformative-self-care-exploration-continuum-mindfulness-and-osteopathy

In the meantime, I'm spending a lot of time rolling around on the floor, doing micromovements, sending wave motion through my feet, and sending movement messages from my left (the other) foot to the healing foot. I hope to be dancing and hiking soon!

Why do I still refer to myself as “The Handless Maiden?" Clarissa Pinkola Estes' Jungian interpretation of this tale (Remember her? She wrote Women Who Run With The Wolves)  helped me through my hand ordeal, and continues to apply to the situation with my feet. The old tale of The Handless Maiden is about a woman's initiation into the dark realms of life through the rite of endurance. The word endurance has many meanings. It can refer to stamina, fortitude, tenacity, and the ability to go on in the face of hardship. To endure also means to make robust, to strengthen, and this is the foundational principal of the tale, and of the creative aspect of a woman's inner life. I'm not just tough and plowing ahead mindlessly; I am creatively adapting to the challenges I face.

I made another pair of hands for myself, and now I will make another pair of feet. This will in turn lead me to a new life. I am being as creative as I can as I continue to dissolve and reform my body into constantly changing versions that are capable of carrying me into the next part of my life. I yearn for a rest from this hard work and suffering, but it's not yet time to be done with this enduring.

My old Santa Cruz friend Mary Quillin sent me this poem when I went off for hand surgery. It still cheers me up and helps me navigate the turbulent waters of living in a body and encourages me to gaze beyond the ever-extending, ever-unfolding horizon.

Blessing the Boats (at St Mary's)
        by Lucille Clifton from Quilting Poems 1987 - 1990

may the tide
that is entering even now
the lip of our understanding
carry you out

beyond the face of fear
may you kiss
the wind then turn from it
certain that it will
love your back
may you open your eyes to water
water waving forever
and may you in your innocence
sail through this to that