Sunday, August 13, 2017

Monsters among us

“Whoever fights monsters should see to it that in the process he does not become a monster.” 

― Friedrich Nietzsche

When I started writing about my cancer journey, I likened my cancer to a monster that had caught me. At the time, it seemed like a monstrous thing.  It was dark and ominous, and I did not know if I could make it retreat. I tried very hard to keep shining a light on it to make it seem less scary, but I will admit that it was not always easy, and the batteries in my monster flashlight required constant recharging. Were it not for my yoga and mindfulness practices, I don't know what I would have done.

Over time, through quiet meditation, I began to realize that the monster was not something outside of myself.  It was me. It was my own cells that were causing me trouble. And so I had to think about my cancer in a whole new way.  I knew that I could try to eradicate it completely, but the funny thing about cancer is that it will keep popping up. Our bodies are always producing cancer cells. Most of the time, we can keep them in check. But if we ignore things for too long, the cancer can build.  If we aren't consistently mindful of our thoughts and actions, our stress can fuel the fire that make cancer cells ignite and grow.  If we aren't mindful of what we put in and on our bodies, we can make our inner terrain more hospitable to cancer.

I see what is happening in our country as white supremacists bring their monstrous hate into our public spaces, and I think about how it is so much like cancer.  Cancer is a cell that was once good but that, through lack of something important, goes wrong. I don't know just what that cancer cell is missing, but it clearly is not behaving the way it was designed to. I think about these men and women who marched with hate in their hearts and fire in their hands and I know that this is not how they were designed to be.  We are not born to be filled with hate. We are not born to be angry and judgmental.  We are not born to believe that some of us are better than others. We are born to be loved. We are born to give love and born to receive love. But somehow, these people have been filled with so much fear that is has resulted in anger and hate.

And so I wonder why these men and women are so afraid. What is missing in their lives that they feel the need to lash out in anger?  I do not understand them, but I imagine they feel justified. I am sure they feel their survival is at stake, somehow. And so in fighting their imagined monsters they have become monsters themselves.

We cannot ignore the monster or it will grow.  We must somehow change our societal terrain so that the monster can be transformed. I don't know just how, but I do know that monsters can be tamed. They can be transformed by shining the light upon them and by recognizing that they are not something other than us. They are part of us. They need our love and compassion because we get reflected back to us what we put out.

I'm going to meet their hate with love, because I don't want to become a monster myself.


Sunday, May 7, 2017

Health Care and Worry

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I was reminded, recently, that many people don't see me on a regular basis and really don't have any idea how I've been doing. So I thought an update was in order, and I do have some very good news to share. I had a PET scan a couple of weeks ago.  These scans are a little more accurate than my quarterly CAT scans because these measure metabolic activity of the cancer.  If the cancer is very active, you get lots of bright lights in the scan. We want little dim lights or no lights at all.  I'm happy to report that there weren't very many lights in my lungs, and they are smaller and less active than a year ago. The ones on my liver don't seem to be active either. The ones in the bones aren't active at all. The treatment I am on is doing just what we want it to do. It's keeping me stable with minimal side effects.  I feel really good, and I feel so very fortunate.

But I've been reflecting a lot on my health this week as the debate over health care laws have dominated the news cycle.  You see, it dawned on me that I'm the person that this new proposed law is trying to save you from.This very successful treatment I am on also happens to be very expensive.  Crazy expensive. I met my deductible for my insurance in January. Just one of the drugs I get is $8,400 per dose.  Another is $4,600.00 per dose.  I get them every three weeks. That adds up $13,000 every three weeks, and that only accounts for two of the drugs. It doesn't include the doctors visits, the lab tests, the scans, and all the other associated costs.  If you add up everything, my treatment costs about $250,000 per year. It's pretty ridiculous. I could never afford this without insurance.

So long as this treatment continues to keep me stable, I could be on it for years, and, well, you can do the math. It's a great deal for the drug companies. It's not such a great deal for everyone else who has to pay more for their insurance because of people like me. So, I'm sorry about that. I really am. I wish it didn't cost so much. I wish I didn't need it.

I was very angry and worried when I first heard the news because people like me, we don't have very many guarantees that we could continue to get coverage affordably.  People like me could be expected to pay a whole lot more for coverage, if I could get coverage at all. Or I could be priced out of getting coverage or go bankrupt due to medical bills. I didn't get cancer because of my lifestyle. Very few people with cancer do. We can't control our genetics, and we can't control the toxic environment that we live in that exacerbates cell damage.

But then I had to stop being angry.  I had to stop worrying. Falling into the drama created by fear, anger and worry are old habitual patterns that do not serve me.  I have to focus on what I can control.  I had forgotten for a moment that I control my reality.  Although I can't control anything externally. I can control my thoughts and my actions.

I don't know for certain that I will need this treatment for the rest of my life.  I only believe this because I was told this by a medical establishment that does not yet have a different answer. My doctor can't, ethically, make a change in my treatment plan, because there is not enough research based evidence to show that it can safely be stopped. But maybe it can. Maybe someday they will have more answers. I know that my daily exercise and the things I am choosing to eat or not eat make a difference in how I feel from day to day. Maybe those are actually the things keeping cancer at bay. Maybe my absolute belief that everything is OK is keeping me well. Maybe it is a combination of many factors. Maybe our politics will change. Maybe we can figure out a way to make health care fair and accessible to all. Maybe drug prices will go down.

What is disease? Dis-ease. Not being at ease. I could be perfectly healthy in medical terms, but still not be at ease. I am not being so simplistic as to say that, if only someone believes something strongly enough or doesn't ever worry that they will never get sick. But I can certainly make my dis-ease worse by dwelling on the negative and the worry and the fear.

I can't control the external world. Maybe I can't control my biology. But I can control my thinking. I can choose to see myself as a victim of cancer, as a helpless pawn in the politics of health care.  Or I can choose to see myself as a vibrant, healthy, loving soul with something positive to contribute to the world. I can use the experiences of living with cancer to empathize and understand the suffering of others.  I can remember that you and I and every living being on this planet are all important and connected.

I can imagine and dream of a world where we help each other regardless of how much money we have. That's not so far-fetched, is it?

Monday, January 2, 2017

Making Changes

You've probably noticed, I don't write very often.  Motivation and inspiration are often hard to come by when it comes to creative pursuits. It's a lot easier to sit down at the end of the day and play a round of Candy Crush than to face the challenge of a blank page in front of me. It'a also a lot easier to sit down and read than to go for a walk. Or to practice yoga. Or to work on my push-ups. Things that are hard are things we tend to avoid, unless they have become habitual for us.

I'm happy to say, however, that while writing has not become habitual for me, fitness has finally become a priority for me. I now feel a bit restless if I don't get at least a half hour of exercise in each day.  If I don't start my day with a few sun salutations or some form of yoga, it feels a little off. A few months ago, on my birthday, I set a goal to be able to run a mile without stopping and to be able to do 15 push-ups.  The mile turned out to be pretty easy to attain regularly, especially on a treadmill (it's too icy outside for running) and although I definitely can't do them all at once, I can do 15 push-ups in a day too.  My goal on my Fitbit has been to rack up 7,500 steps per day.  Now that seems like it might be too low, and I feel like maybe I should increase it.

It didn't happen overnight though. It was a slow, gradual process. That's how change works. Little changes, over time, add up to big changes. It's a good reminder as we start up a new year and have our many resolutions and goals. It's so easy to grow impatient when the changes we seek don't happen right away, but if we keep at it, we will eventually see results. And if we really pay attention, we will notice the subtle changes each day, and then one day we surprise ourselves by doing more than we thought we could.

I have to keep the same mindset when it comes to my scan results.  While I was super happy to learn that everything was stable, I was also disappointed that I didn't see reduction.  My goal, you see, is for my scans to show nothing. NEAD - No Evidence of Active Disease. It's frustrating to me that I'm not there yet. I'm already taking advantage of everything Western medicine can do with my Perjeta and Herceptin treatments, so now I'm exploring other healing avenues as well. I've changed my diet even more. I've changed how I exercise, and I'm changing how I think. I'll share more about all of those changes in future posts, but the bottom line is that I'm making lots of changes. I'm also trying to stop giving a set of scans so much power and start to reclaim my own power. After all, does it really matter what the scans say?What good is a clean scan if I feel lousy? How I feel is what really matters in the day to day.

And I feel pretty great. I hope you do too. If not, I hope you can see that you have the power to effect change in your own life. I will not sit here and pretend that it is easy. It's not. Some days I really just want to curl up by the fire and not go out in the cold for that walk. Some days, I really, really want to eat that chocolate covered doughnut. Some days, meditating for 5 minutes feels like painful hours. But I'm learning that it is the hard things that make us grow. It's the challenges we overcome that make us feel strong. We just have to stay focused on the direction we want to go and keep trying and keep on doing the hard work.

Change does happen. Things do get easier. We do get stronger. We just have to decide to do it.

Saturday, November 12, 2016

Hope and Fear - Who is Driving?

Eleven months ago, I found myself in a very dark and very scary place. I could not breathe properly. Something was terribly wrong. The chest x-ray at the ER confirmed my very worst fears. My cancer had returned, and I was scared. I was scared about what kind of treatment options I might have. I was scared about pain. I was scared that I would never feel good again. I was scared about dying and the toll it would take on my family and friends. And I couldn't bear to keep feeling that way, so I had to learn how to stop being scared.

Fear is a powerful motivator, but it can't be in the driver's seat because it spoils the road trip for everybody. Fear likes to drive at night when everything is dark and you can't see the beautiful scenery. Fear never likes to stop at interesting roadside attractions or take the road less traveled. Fear never wants to open the windows to let in some fresh air and won't stop anywhere for decent snacks. And so the journey becomes one of drudgery and darkness as we while away the hours hoping to get to our destination safely, worried about every turn in the road ahead.

It is a very hard thing to put fear in the back seat or even kick fear out of the car when we worry about all the possibilities that could prevent us from making it to where we wish to go. But it must be done or we risk losing the very happiness that we so desperately want to preserve. When we let fear drive, there is no joy in the journey, and we don't get to our destination any faster or easier. It just robs us of moments of happiness along the way.

Hope, on the other hand, is a much more interesting driver. Yes, hope is sometimes misguided and takes some risks, but how else will you get to see the view from the curvy mountain roads? How else will you get to enjoy the wind in your hair as you open the windows and appreciate the blue sky? Hope knows where you want to go, just as fear does, but hope has some good corny jokes and brought along some cookies to share with everyone you pass along the way.

Two weeks ago, we were in Nicaragua on vacation at the beach, and we were all having a fantastic time boogie boarding in the waves. Until, of course, I stepped on a string ray and got stung. It was excruciatingly painful - some of the worst pain I have ever experienced. I was fortunate that the person working at the surf shop near the beach knew that soaking my foot in super hot water was the best remedy. She helped me get my foot in the water and provided encouragement as I struggled with the intense pain for about 30 minutes. And then the pain was pretty much gone, and I was fine. Unless you count the fact that the intensity of the experience resulted in a delayed reaction of me fainting at dinner and taking a quick trip to the local village clinic. I was still fine. I just shook everybody up a little bit.

We thought the experience was pretty isolated, so we went boogie boarding the next day at a different beach. Wouldn't you know, it - BAM! My friend got stung even worse than I had been. After two experiences like that, we pretty much decided to stay out of the ocean. We had planned to go surfing one day, but all of us were too afraid to go back in the water. Who knew what else was lurking in the surf zone that would attack us?

But, I just couldn't let go of the idea of surfing. I had traveled so far, and there isn't much in the way of surfing in Minnesota. If this was something I really wanted, I had to say no to being scared. I crossed my fingers that lightning wouldn't strike a third time, and I went back in the water.  I shuffled my feet in the sand and tried to be cautious about where I was stepping. I sent out friendly vibrations to the little sea creatures in the hopes that they would stay out of my way. I was shameless in jumping back on my board after each wave and letting the surf instructor push me out so that I didn't have to walk much in the sand. But I had a wonderful time, and I would have missed out on so much if I hadn't pushed that fear aside.

A lot of people are feeling fear right now. Our country, our world, seems completely messed up. We don't know what the future holds. We don't know where this road will take us. But the truth is that none of us have ever known that. Eleven months ago I thought life was over, but two weeks ago I was surfing in Nicaragua. We can let fear drive and have a pretty unpleasant journey, or we can let hope drive and enjoy the trip.

Make room for hope.

Saturday, October 1, 2016

The Power of Music

In the last week, I have had the opportunity to see two different live music shows. They could not have been more different. One was a very intimate setting, with maybe 40 people in the room, with acoustic guitars, beautiful voices, and a tiny drum kit that fits into a suitcase.  The other was a super loud rock show in a venue with over 2,000 people with lights, huge speakers, and three full bands.

One had musicians whom I am fortunate to know personally and whose music I listen to regularly at home. The other had bands whose music I didn't really know at all. I went because a very dear friend invited me, and I mostly just wanted to spend time with her.

Despite the totally different experiences, there was still something about them that was the same. There is something special about the power of music that brings a bunch of strangers together to share a common experience. There is a connection that happens with you and the performer, with you and the other audience members, that is hard to articulate, but you can feel that connection.

You don't need to know the lyrics to the songs to experience the emotion of it.  In fact, even when you know the lyrics, you often find that what they mean to you is different from what they mean to someone else.  Each person takes what they need from the song.  But if you pay attention, you can sense the energy and emotion of everyone in the room around you.  I had a few moments like that at these music shows.  I closed my eyes, and I could sense the life energy of all those people around me. I could sense their hopes, their dreams, their sorrows, and their beautiful life force humming in the background. I could sense that we are all the same. Behind the ego masks of who we think we are, if we peel them away we find that we are, really, all the same.

It's important to remember that during these divisive times. Maybe that's why music is so important. Music is universal. Before we are born, we hear the beating of our mother's heart, a rhythm of life that is always in the background.  Our own hearts continue the rhythm, and they all beat together into one continuous vibration.

I was inspired to pick my guitar back up and try to work on some new songs. I have only written two songs in the last year. One was a song for two sweet little babies who joined our world recently. (Just as a side note, if you are ever looking for a way to lift your spirits and stop focusing on the woes of the world, you should just write a song for babies. It's a surefire day brightener.)  The other I wrote while on vacation, inspired by the beauty of the natural world and the majestic trees of the Pacific coast. It takes inspiration to write a song. Sometimes I just don't have it. Sometimes I channel the spark of those creative impulses into writing this blog. In some ways it is a lot easier. In some ways, it is actually the lazy route for me. I don't have to think about meter or rhyme, or what key I should use. I don't have to worry about if I can actually play on guitar what I hear in my head  But I have to admit it really doesn't satisfy the same need.

I realized this after listening to the songs from both of these music shows.  I think we need to tell our stories in music because I think it might be the language we communicate in best.  I just started working on a song that I'm calling "Alright Today". Because, for today anyway, I am alright. My scans this week showed no progression of my cancer. I'm happy to report that things are stable, and we will continue with the current course of treatment. So I am alright. And I'm going to tell that story.

Saturday, September 24, 2016

Listening to the Body

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I have not done any running this week. In my last post, I suggested that my body should not be listening to what my mind says.  It is, however, true that the mind should usually listen to what the body says.  The start of the school year typically brings new viruses into the house, and Jasper brought home a potent one that he so generously shared with me. My body has been fighting this virus for a few days, and it does not really want to run right now, so I've been keeping the exercise to walking, a few planks, and some light yoga.

Our bodies tell us things all the time.  How often do we listen?  I know I am guilty of ignoring what it is saying to me.  When I have aches, pains, coughs, discomforts, I usually shrug them off, convinced that they will go away soon. If I am really, really tired, do I go to bed earlier? Usually not. If I am feeling a little under the weather, do I go to work? Yep! I usually do. If my cough isn't going away, do I go in to the doctor right away? Um. No, not so much. Perhaps if I had been listening a little better to my body I would have realized that I was not just out of shape last year. Perhaps if I had not been truly paying attention, I would have felt the slow decline of my stamina and realized something was up much sooner.

As a practicing yogi, I always thought I was pretty in tune with my body. I can tell when I"m getting stressed, and I can find a breathing pattern that helps me to remain calm. I can see when I should back off of a challenging pose that my muscles are not ready for.  It's been a long time since I've injured myself in my practice because I do pay attention when I'm on my yoga mat.  But as I reflect on the past year, I can see that I wasn't following the same practice off the mat.  My body was hollering at me that things were not right, and I just refused to listen. As I find myself coughing from this cold virus, I am reminded of how many weeks I was coughing last fall, and how I kept telling myself that the cough was nothing serious.  And we all know how that turned out.

I'm feeling pretty good these days. I feel strong. I feel pretty healthy. On Monday I go in for my quarterly CT scan and bone scan and we will see, visually, if things match up with how I feel.  I like to think I've gotten better at paying attention to my body. I'm trying to eat the right things, and make all the right moves. I am trying to take a few minutes each day to sit and simply notice where I am holding stress, to notice where I am feeling not quite 100%. I'm trying to listen to the subtle hints and whispers that say move, rest, eat, drink, sleep.

The body will eventually get your attention, one way or another. I'm learning not to make it yell.

Sunday, September 18, 2016

Peeling off the Labels

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I am not a runner.  At least that's what I've always thought about myself. I am not athletic. The only "sport" I ever really was decent at was water-skiing, but if you don't live on a lake and own a ski boat, it's not exactly an activity that you can do every day.  I walk and do the yoga thing. I bike a little bit, but I wanted to up my cardiovascular activity, and running seemed like the quickest way to improve my fitness level and also to quickly get those steps in each day that my FitBit tracks for me.  So I decided to try running a little every day. I figured it would probably take me a few weeks of trying before I could even run a mile. After all, I'm a little bit broken, right? For heavens sake, I'm in cancer treatment. How could I possibly run a mile yet?

I started by running a block and then walking a block and just alternating back and forth a few times.  I did that for a couple of days. And then, on the third day, I wasn't really paying that much attention, and I realized I was still running into the second block. And when I finished those two blocks, I realized I was working hard, but not so hard that I needed to stop. And then I just kept going until I found I had reached that one mile mark. Once I stopped listening to the voice in my head that was telling me how hard it would be to run a mile, I found I could actually do that mile without too much difficulty. By disregarding that label of "broken" that I had given myself, I found that the label was false. All those other labels, that I am not a runner, that I am not athletic, they are false too.  When my mind stopped telling my body what it couldn't do, it did just fine.

We assign labels to ourselves and to others all the time.  We define ourselves by our jobs, by our friends, by our beliefs, and by so many other ways.  I am a mother. I am a bad cook. I'm an extrovert. I am smart. I am not that smart. I'm great at math. I'm terrible with numbers. I am fat. I am not lucky. I am a liberal. I am a conservative. I am a cat person. I am a dog person. I am this. I am not that.  But when we start to label ourselves, we start to believe that is who we are.  We start to give the label more power than it deserves. In fact, if someone tries to take that label away from us or assigns us one that we don't like, we can even feel like we are worthless or that we have failed in some way.

I think we all know we should never read online comments, but sometimes curiosity takes over. It can be so discouraging, can't it? There is so much anger and judgement of each other. So many labels are being assigned. People do it in person, of course, but it seems to be even more prevalent with the relative anonymity of the internet.  Total strangers call one another fools, morons, evil, idiots, bitches, and much worse. It doesn't seem to matter if it's politics or if it's a book review or even a recipe suggestion. We don't understand why this stupid person who believes something different can't see how stupid they are being. And it gets us nowhere. We just end up feeling upset. We feel fear and anger over the things being said. And we don't just feel it in the mind. We can feel it in our bodies as we tense up and feel the emotion rippling through. Our bodies are always listening. Even if we don't believe we are stupid, having somebody label us as stupid gets under our skin.

Of course, none of those labels are really who we are. Labels are transient things. We can change our names. We could change jobs. I can change my hair color or my weight. I can change my religion or my political persuasion. I can change my opinion. I can change my mind. I will still be the same person. I am not really any of those labels.

What it we all stopped labeling ourselves?  What if we all stopped labeling each other?  How much more peace would we all have? We have so much unhappiness because of labels, because of our thoughts. But thoughts aren't true. They are just thoughts. Labels aren't true. They are just labels. Just words. We endow the thought with the power of reality, but a thought is not real. It's just a bunch of electric chemical impulses that happen in our brain. We lie awake at night because of thoughts. We yell at each other because of thoughts. We suffer because of thoughts.

Our bodies hear all of these thoughts and respond.  I am old. I am ugly. I am weak. I am lazy. I am fat. I am angry. I am tired. I am sick. We use these words, these labels, against ourselves, and our bodies listen and respond accordingly.

I have labeled myself as a cancer patient. I have given this label a lot of power, and I know I have let it take over my thoughts frequently. What if I stopped thinking of myself as a cancer patient? What if I stop thinking about what might happen and just live in the moment? What if I peel off the cancer label. How will my body respond?

Have you ever seen a flower that you didn't know the name of? You didn't need to know it's name to appreciate it's beauty. You could just appreciate that it was there. When we see beyond those labels, beyond the symbols we assign to things, we can discover the beautiful presence that is simply there. We are not labels. We are not thoughts. We are simply here, and we are beautiful.

What if we all peel away all the labels that we use to define ourselves? Who is underneath those labels? That's who we really are.

Let's peel off those labels.