Monday, December 4, 2017

The Power of Writing

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Sometimes I write things that I don't post.  I intend to at the time that I'm writing, but something just doesn't feel right, or I just get stuck and don't quite know how to continue, or I can't figure out what the heck the point is that I'm trying to make. It is interesting to look back at some of these unfinished writings and see how much I have changed over the years.

We don't always notice how much we have changed.  We tend to believe our thinking is pretty static, but that just isn't true. I recently read a piece I started about seven years ago talking about food and what we should or shouldn't eat.  I never posted it, and now as I look back, I am pretty bemused by it. Who am I to say what you should eat?  I honestly don't know what each of us should eat. It's totally different for each of us.

It reminded me to look back on my Caring Bridge page from ten years ago when I went through cancer treatment the first time around, and I was a bit taken aback with how relentlessly chipper I was. I joked a lot and used a lot! of exclamation marks! As I look back at those posts now, I can see that I was desperately trying to make sure that nobody worried too much about me.  My posts were meant to convince everyone, including myself, that I was strong and that everything was going to be just fine! 

My writing now is a bit different - a bit more introspective. And so I found myself asking, why do I write anyway? Is it to get something off my chest? Is it to share information? Is it to impart some hard-won wisdom?  I think it's a little of all of those things. I think we tend to teach best what we most need to learn ourselves. By writing, I am reinforcing for myself what I want to learn. I am reinforcing for myself what I believe. I am still convincing myself of things just as I did ten years ago. When you put words to paper, it changes things. It makes things more real. It makes you really stop and consider. It makes you sift through the swirling thoughts in your head to create order out of the chaos.

When you write something, you are putting it out into the world to possibly be made manifest.  I think about how those words on the page create a reality.  They create a feeling when I am writing them, and they create a feeling when you are reading them.  This is pretty powerful stuff. Words create worlds. Do you know what the word "Abracadabra" means?  It's actually an ancient Aramaic word that means" as I speak, so I create". That's real magic. The words we say create reality.  The words we write are even more powerful because they are so much more permanent.  They live on long after we write them, and they continue to impact people again and again. 

And so I had to make a change on my blog page in the "About Me" section.  I realized that written there, to be read over and over again, by me and everyone else, was a statement about my health where I identified myself as someone with stage IV cancer.  This was how I presented my identity.  It was one of the few things I said about myself.  I ask you, how can I possibly change this about myself if I have it written down as part of how I define myself?  How can I convince myself of any other possibilities if I have that staring at me anytime I see my blog page?  And so it is gone. I have wiped it clear and now there are endless possibilities for how I choose to define myself. Now it reads that I am writing about the journey, not the destination.  I am writing about seeking and finding beauty. I am writing to change my world into the place I want it to be.

How powerful is the written word? Life changing.

Sunday, October 22, 2017

Putting in the Work

I went to the garden center today at my local home improvement store and it was a pretty forlorn place.  All of the plants are gone now that fall is in full swing and the days are getting shorter and colder. Christmas decorations abounded inside the store as a reminder that winter is not so far off. Outside, in the area that usually holds so much life, there was almost nothing. There were a few random pots, a few dusty birdbaths, and hidden in a corner, was what I came for - the rack with the tulip bulbs.

I haven't planted tulips or other spring bulbs in a very long time.  The few that were in our yard had disappeared over the years to hungry squirrels and some difficult winters. But I love tulips. I love the crocuses that start coming up through the snow bringing the promise of winter's end. I swoon over the gorgeous scent of hyacinths as their fragrance foretells the explosion of warmth and color soon to come.  And so I made the effort today to find them.

It was a lovely sunny day here, and I eagerly went out to my flower beds in the front yard to start the business of planting.  It was so much harder than I remembered. Digging up compacted dirt is backbreaking work. Figuring out where to plant, and how deep to plant, and how they should be arranged, were all challenging. But the promise of a beautiful spring several months from now was worth the tired arms and sore back.

I don't know if I planted deeply enough or early enough. I don't know if the squirrels will dig them up.  I don't know if they will come up in the spring. But it was a powerful reminder that good things don't always come easily, and they don't come overnight. It's a slow process, and we have to get through some dark and challenging days with no certainty of the outcome. But we put in the work anyway, and then we trust that the work will pay off. And then one day, when we least expect it, we see a little green poking up through the snow.

It may be a long ways off, but here's to a beautiful spring.

Saturday, September 30, 2017

Be Impeccable With Your Word

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Many years ago, I read a book that changed me in many ways and continues to affect me every day.  The book was The Four Agreements, by Don Miguel Ruiz. He writes that we all make agreements every single day.  We make agreements that certain words mean certain things. We agree that certain ways of behaving are acceptable and others are not.  We make agreements about everything from what kind of toothpaste we think is right to buy to who gets to turn next at the four-way-stop. We make agreements about our beliefs. Some of our agreements are helpful and some are harmful. Some of our agreements make us miserable. But there are four agreements we can make that will transform our lives and help us to create peace and harmony within and without.

1. Be Impeccable With your Word.
2. Don't Take Anything Personally.
3. Don't Make Assumptions.
4. Always Do Your Best.

They seem simple, right? But they are much harder to master than one might think. The first agreement, "Be Impeccable With your Word", is the foundation. If we focus on mastering this one alone, it will change our lives completely.  Being impeccable means that we recognize the power of our words and use them with great care.  That's really where everything starts, isn't it?  Even the Bible says, "In the beginning was the Word." We can cause so much damage with our words. We can say the most awful things to one another and spread so much emotional poison through our words. We can incite crowds to violence or other destructive behaviors. We can spread lies, gossip and falsehoods. We can destroy lives, both our own lives and other lives, with simple words. A few simple words can create mistrust. A few simple words can destroy friendships. Words can raise blood pressure, cause fear and anger, and bring people to their knees in sobbing tears.

But words can also do just the opposite. Being impeccable with our word means we don't use our words to cause any harm. We don't use our words to gossip, to complain, to belittle or chastise. We don't use our words to spread hate and violence. We don't use our words against ourselves or against anyone else. Instead, we try to use our words to uplift, to encourage, to bring light and joy to others, and to ourselves. We use our words to inspire and make people smile. We use our words to spread love and kindness.

I am always conscious of the fact that our words have so much power.  Perhaps that is why I don't write posts very often. I try to be impeccable with my word, but it is so much harder than it seems.I read the news stories of the day, and I often am frustrated.  I find myself wanting to write and vent about the things that offend me. But then I remember this agreement, and I ask myself if it is really necessary for me do that.  Am I being impeccable? Am I using my words in a way that is helpful and not harmful?  How will it help if I just add my fuel to the verbal fire? The people that agree with my viewpoint will continue to see their blood pressure rise as I make the case for why something is so terrible.  The people that don't agree with me may also see their blood pressure rise in argument over what I might have to say.  There is nobody who wins in this scenario. We all end up frustrated and upset.

I am learning to be more conscious in the way I communicate. I don't always succeed, but I each day I try.  And I am learning to give words less power over me.  They are just words, mere squiggles on a page. They are simple thoughts, but thoughts are not real. Yet we have imbued those words with so much energy. Fear, anger, and hate are all words that have great power. Do you notice how you feel when you say any of those words?  Love, peace, and kindness are also powerful words.  How do they make you feel when you say them aloud? Which ones make you feel better?

I was reminded of this when I heard this story the other day:


A son and his father were walking in the mountains. Suddenly, his son falls, hurts himself and screams: "AAAhhhhhhhhhhh!!!"

To his surprise, he hears the voice repeating, somewhere in the mountain: "AAAhhhhhhhhhhh!!!"

Curious, he yells: "Who are you?"

He receives the answer: "Who are you?"

Angered at the response, he screams: "Coward!"

He receives the answer: "Coward!"

He looks to his father and asks: "What's going on?"

The father smiles and says: "My son, pay attention." And then he screams to the mountain: "I admire you!"

The voice answers: "I admire you!"

Again the man screams: "You are a champion!"

The voice answers: "You are a champion!"

The boy is surprised, but does not understand. Then the father explains: "People call this an echo, but really this is life. It gives you back everything you say or do. Our life is simply a reflection of our actions. If you want more love in the world, create more love in your heart. If you want more competence in your team, improve your competence.

This relationship applies to everything, in all aspects of life; life will give you back everything you have given to it.

We, each of us, create our own realities by the words we choose to use.  When we use fearful, angry, blaming or defensive words, guess what we tend to get back?  When we use kind, encouraging, and hopeful words, we tend to get those returned. 

I know which ones I'd rather get back.

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.