Curiosity Saved My Life

Curiosity may have killed the cat, but it has saved my life…more than once. A few weeks ago, during the week of my 61st birthday I received a message from my bones. My sternum and 3rd rib began throbbing, broadcasting a message of the return of cancer. Although the exact content of the message was somewhat cryptic, it’s general theme was perfectly clear. In 2013, I wrote, “I promised to listen, and now I hear an unexpected language spoken in a strange tempo that sounds like the static blur of a shortwave radio transmitting a distress signal from a faraway place in the night.” Cancer has called out to me again, has gotten my attention, and has sparked my curiosity.

Although I admit to initially being a bit freaked out, I was/am mostly disappointed. It was like that chopped steak moment I described in my blog entry on November 5, 2009. https://bonniegintishealth.blogspot.com/search?q=chopped+steak This isn’t what I expected! We all go through our lives thinking we know what’s going to happen next, and when the unfolding reality doesn’t match our interpretation, judgment, and conclusion about life, we react in ways that are often not helpful. Each moment is uncertain. What makes us so arrogant, to think we know what’s going to happen next?

When I catch myself doing this, I have a mantra, “there I go again.” I can’t force myself to stop feeling what I feel, but I can become aware that I’m feeling something that may or may not be real or true (whatever those things mean.) I can put a little space between me (whoever that is) and what’s happening. In that space, I can choose where and how to pay attention and how to expend my precious energy.

Once I let myself have a good cry, like bad weather, my emotions passed. Then I dropped down and felt the sadness of loss where it landed in my body, and I leaned in and listened with curiosity. I let go of being afraid, and discovered that I am very interested in what’s actually going on. Being curious is about recognizing novelty and seizing the opportunity it has to offer, without judgment or making a story. Curiosity often leads to buried treasures.

Whenever you get bored, you’re not paying attention. There’s always something to spark curiosity. I got curious about the pain in my chest and responded by asking my doctor to move up the date of my annual PET scan from December to October. I got the message from my body, and the really curious thing is that the messenger, the pain, went away in a few days, and nothing ever showed up on the scan in the area that hurt. But responding to the message of the sensation led me to find this tiny new cancer growing in my breast in time to do something about it before it spread.

It's not about whether to pay attention but how to pay attention. It’s possible to be attentive without curiosity. I can glance over the surface of things and miss what’s important, or I can ride the fine line between positive thinking and denial and completely miss the message.

I am committed to a life of curiosity in which I fully participate in the present moment. This allows me to become sensitive to what's actually happening regardless of how it differs from the past, or from what I expect the future to be. The best we can do to resolve the past and prepare for the future is to savor the possibilities of what can be done in the present moment. When we encounter a problem, we often go to quickly into “problem-solving” before we’ve been informed enough to have insight into the necessity of the moment.

On a mundane note, I have a Plan A, B, & C. Plan A is my switch back to another estrogen blocker. It's no big deal; just a different pill once a day. We will re-evaluate in 4-6 months to see if it's working. I'm addressing some new approaches to diet and supplements to boost my immune response. As I type this, the pathology people at UVM are comparing my recent biopsy to my original 2009 biopsy to see if they can learn something about the character of what I'm growing. It won't make any difference in the short-run, but in the long run, I might need to understand the difference (or lack thereof) between version 2009 and version 2017, and implement another plan. 

We have a new window facing the woods and the rocky ledge behind our house, and although I could never recommend that anyone have construction at home while going through a biopsy, now that it's over, I can say, "it was worth it." Watching the birds, the squirrels, and the plants change each day is endlessly enjoyable and feeds my sense of connectedness to the natural world. I'm curious about the medicinal value of window-gazing.

What Transformation Isn't

As always, there’s good news and bad news. The bad news is what I have known deep down since my rib started throbbing a few weeks ago – the biopsy showed that it is breast cancer. I already knew that, so I’m not in shock or upset – mostly disappointed.

The good news is that it is still highly estrogen-positive and HER-2 negative (for you non-medical types, that means it’s less aggressive and treatable with several relatively non-invasive options.) I will most likely switch to a different estrogen-blocking oral medication and monitor again in 4-6 months. More tests will be done to see if it’s a new cancer or a regrowth of what I had before. And as always, we will monitor to see if it spreads or stays put, or better yet, disappears.

I got the phone call and literally ran out the door for a massage that just happened to be scheduled long before I know it would be perfectly timed. It was just what I needed to ground me in my body and help keep me feeling expansive. Thank you Natalia!

Cancer is a transformative ordeal. So much of my life has changed because of it, and not all for the worse. Even though I cringe when I hear some people refer to cancer as “a gift” I can see how it has made me pay attention, cultivate discernment, and refine the way I make choices. As far as the “gift” goes, if I had a choice, I’d return it to Macy’s and exchange it for a sweater. But since it isn’t a gift, and I can’t return it, I ponder what this transformation is about…

What Transformation Isn’t?

Transformation isn’t about self-improvement. If you approach making changes in your life in the spirit of what’s wrong with you, then you might miss the opportunities that arise from what’s right with you. There’s nothing wrong with you that can’t be helped in some way by what’s right with you.

Transformation isn’t about curing a disease. It’s certainly great when this happens, but many diseases are chronic or terminal and their presence in your life doesn’t prohibit you from experiencing transformation in some other way. Being attached to getting rid of a malady can prevent you from experiencing transformation elsewhere in your life.

Transformation isn’t about fixing something. Some things in life that are broken are simple and can be mended. A paper cut on your finger seems dramatic when it happens, but a week or so later you notice that it has healed on its own without a trace.

A broken bone can knit back together, but a trauma that is forceful enough to break a bone causes other tissue damage, as well as a generalized reaction to the shock can leave a residue of vulnerability in the system. A broken heart can mend, but often leaves a trace of sensitivity. Leonard Cohen, in his song, “Anthem” reminds us that it is this brokenness that allows light to shine,

“There is a crack in everything. That's how the light gets in.”

Consider that broken-heartedness might not need fixing. Even the word “fix” is problematic. It comes from the Latin “fixus,” which means to fasten, which is contrary to the very nature of the living human body, which is in constant motion. Everything in the body, as well as in our emotional and mental activity needs to move freely to express optimum health. Fixing something, holding it in place is contrary to the laws of the nature of living systems.

I can’t “fix” my cancer. I want it to move, to metabolize itself and leave me intact. I can’t help wanting this…and I know my best chance comes from meeting each moment and listening to the call from this deep dark process that has grown inside me, and allow the light to shine in all directions.

Here’s a sculpture by Paige Bradley that inspires me:

Lean In And Listen Closely

While living with the uncertainty of my pending biopsy result, Steve and I decided to immerse ourselves in the mountain air of the Laurentians (technically, the northern extension of the Adirondacks into Canada, an hour and a half north of Montreal). We have a fabulous little place we like to visit on la ”Rivière du Nord,” the North River. We hike on Parc Linéaire Le P'tit Train du Nord, which we step out onto from our front door. We have a waterfall right outside our windows and balcony that keeps putting us to sleep. We've already slept late and napped twice today. 

I love being immersed in the french-speaking ambiance of our friendly North American neighbors. It quiets my own mental chatter. I have been channeling that chatter into writing. Here's a sample:

My friend Terri recently proclaimed, "How grand of your sternum to warn you that something needs attention." It’s true; thanks Terri, for framing it that way. It is totally grand! We so often complain about pain or other signals our body gives us to let us know we need to do something. It’s valuable information and all too often, we act annoyed. I don't have to like it, but pain is a valuable messenger. The pain in my sternum announced that I needed to move up my annual PET scan from December to now, in order to evaluate what's happening and intervene if necessary. If I didn't have the pain, cancer could spread and kill me without any warning. Listening to my pain, at least I have a better chance.

For a previous entry on listening to my bones, check out:
http://bonniegintishealth.blogspot.ca/search?q=i+promised+to+listen

I feel like a grumpy old person when I hear myself start complaining about the way things are “these days,” but I’ll say it anyway. I don’t care if you call me grumpy and old-fashioned! In this fast-paced society people have gotten impatient. People expect their bodies to move at the pace of their smart phones. People expect relief in the time it takes to send a text message. People expect healing to be like a reboot, and require as much time as it takes to push a button and restart. But biological time is slow, and no matter how much society innovates, it takes time and attention for our bodies to heal or adapt.

People think they are entitled to a pain-free life. Sorry, but when you come into the world in a body, pain is part of the deal. Some of it seems like senseless suffering, but most of it is crucial information, broadcasting that something needs attention. Most pain is there for a reason, and if we learn to listen and not just obliterate the message, we might have valuable clues about how to care for ourselves more effectively.

The pursuit of happiness is confused with feeling entitled to happiness itself. We (the privileged people who live in somewhat "free" societies) are not entitled to a perfect life or a pain-free body. What we do have is the privilege of being free to pursue health and wellbeing in many ways, that’s all. Our society grants us access to the process, but doesn’t guarantee the product.

Is there a pain in your life that you haven't committed to listen to deeply? Can you lean in and listen closely? Try it and see what you learn.

An Unexpected Blip On The Screen

I consider it a healthy sign of life that I have somewhat abandoned blogging. It's been 10 months since my last entry and I realize that I associate this blog with cancer updates, and until this week, I haven't wanted to post anything.

A few weeks ago, out of nowhere (that's where all cancer seems to come from), I began feeling a disturbingly familiar throb in my chest at that place where my right 3rd rib meets my sternum. Over a day or so, it got increasingly worse. I know this sensation; it's how it all started in August of 2009. I called my oncologist and we decided to bump up my annual PET scan and do it now instead of waiting for December. I had it done last week.

The result is mostly, but not completely good; the spot that made me have the scan early is unchanged. Yay! There are no changes in any of the places I had previously had bone mets (clavicle, scapulae, pelvis). Yay! Nothing lights up in any organs. Yay!

But, as Pee Wee said in Pee Wee's Big Adventure, "Everybody has a big but...", a 1.3 cm spot lights up in my right breast. No one knows what that means. I originally had about 4 or 5 tumors in my right breast and they went away within 4 months of starting estrogen blockade (and all the other things I did back then to address my "terrain".) Is this a new breast cancer? Or is this an old one waking up? Has it mutated and changed? If we hadn't done this scan, would it be gone a month from now? These are all unknowns. I will pursue the answers which are knowable, and continue to practice living with the uncertainty of the answers that are unknowable.

I am going to have it biopsied this Friday October 20th, which is a good thing to do after 8 years of estrogen-based treatment, just to see if it's character and sensitivity to estrogen has changed. The worst case scenario here is that I have to change my treatment plan, but a new one would still be based on some oral medication. Although it's not the result that I would prefer, it's not catastrophic or devastating. I'm disappointed, but not that distraught.

If you're curious about what I've been up to, check out my 2 workshops for 2018:
http://www.bonniegintis.com/teaching/

Steve and I are still dancing tango. It's somewhere on the spectrum of fun, meditative, creative, rehabilitative, frustrating, sensual, and exhilarating. Many of you have asked how I dance tango in sneakers (I won't inflict spike heels on myself), and have requested a visual. I'm sorry, but it's a contemplative practice for me and I wouldn't think of posting a video of me meditating. However, here's a video of someone else dancing in sneakers (not too shabby, huh?!) with a great contemporary punk tango band:
https://www.youtube.com/watch?v=WwRlL689PCk

Vermont continues to be an amazing place to live. As the days grow darker and cooler, I look forward to sweaters, my fireplace, and pots of soup. As long as I'm not shoveling, it's good weather. And since I live in a condo, and someone else shovels, it's always a beautiful day!

It's still a full time job caring for myself. I have actually been writing, but not wanting to share what I'm writing yet. I know that it will turn into another book someday, and I'm needing to let it cook internally before sharing.

So, instead of sharing something I've been working on, here are a few excerpts from blog entries in which I explored living with uncertainty:

from 6/16/14:
“We all live along a continuum of uncertainty, but usually only realize this in retrospect. We have plans and ideas about what our life is about and where we think we are headed. And it can all change in a moment; a drunk driver can head right at us with nowhere to escape his impact, soldiers can go on a rampage in our village without warning, a hurricane or flash flood can wash away our home, a fire can ravage our home, but for me, it was metastatic breast cancer that suddenly announced the change of trajectory of my life and brought the awareness of uncertainty that had always been there. Unexpected questions arise when faced with the reality of uncertainty.”

from 2/6/12:
My challenge in all of this is to remember I’m the same person I was before the scan. This result doesn’t change my actual life; it just changes what I think about my life. I had an old teacher who used to say, “Your mind is a bad neighborhood. Don’t go there. You’ll get mugged.”

This is the reality of this disease. It is chronic. It will most likely come, and hopefully go, for the rest of my life, regardless of how long that ends up being. I can’t help but want to be special, be a miracle, be an overachiever, be an outlier, and I don’t want to feel like a failure or that I am to blame if things don’t go as I prefer.

This is as close as I get to positive thinking. I acknowledge my desire to live a long life and to have a chance to re-invent my life. I want to have more adventures. I want to be with my loved ones and be a part of their lives unfolding. I want to be of service to people again someday in some greater way. The intensity of these desires and my longing for life feels like my life force expressing itself. How do I maintain this passion for life and yet let go of what I can’t control?

I don’t believe in positive thinking because I don’t believe that thinking is the way to guide our lives. Positive or negative thinking is still thinking, and thinking is not the most powerful force in us. The harm that’s done is obvious when people get caught in repetitive negative thinking, but positive thinking can also make a person blind to that which they really need to be responding. There’s a fine line between positive thinking and denial. And regardless of what we think, our unconscious still exerts more influence than our conscious thoughts. I believe that people who say one thing and unconsciously harbor the opposite are ultimately at much more risk of serious consequences, because they are in internal conflict and discord and not in touch with the necessity of the moment.

So I let myself feel the disappointment, the sadness, the grief, but I don’t dwell on it. It’s like bad weather; it will pass. I try not to let fearful scenarios take up space in my thinking because they are clearly only one possible future. I also try not to dwell on my desire to have my life be mended, because my desires are not reliable either. If I get too attached it makes it harder to cope with not getting what I want when that eventually happens. Inhale. . . exhale. . .

It’s good to be alive and breathing as I sit here typing on this morning knowing that you all will be reading this and joining me in being alive together right now.

with much love and gratitude for having you all with me on this great adventure, Bonnie