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

Image result for listening to the body quote

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


Image result for your body hears everything you say

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.

Sunday, September 4, 2016

Taking the Long View

Victory Memorial Parkway. Photo from Minneapolis Parks.
Last night, my son, Jasper, and I went for a walk.  We live near a very special park called Victory Memorial Parkway.  It's a 3 mile stretch of road bordered by green space that pays tribute to the 568 men from Hennepin County who lost their lives in World War I. Five-hundred and sixty-eight trees, evenly spaced, line the parkway, each with a plaque on the ground beneath bearing the name of a lost soldier. It's easy to take for granted this open space, but when you take a moment to ponder what this space represents, it's really an impressive thing.

It is especially impressive to think about the people who dreamed up this monument. It probably took several years to plan and bring to fruition. Charles M. Loring was known as the "Father of Parks" in Minneapolis, and he was the driving force behind the parkway (as well as most of the other parks in the city - you can read more about him here). The memorial was dedicated in 1921, and he died in 1922. He never got to see the parkway as he had envisioned it, with a canopy of full-grown stately elm trees lining its length. Trees grow far too slowly. But he gave more than $50,000 of his own money to make sure the trees of the parkway would continue to be cared for, even though he was never going to see them in their glory. This was someone who did not do things for instant gratification. He took the long view.  He did them because it was the right thing to do.

I am not so good at taking the long view.  I'm guessing most of us aren't. We like things to happen, and we like them to happen right now, thank you very much. We don't like to delay gratification. We want the bowl of ice cream tonight, even if we know the calories might add to our waistlines.  We know we should go to bed early to make getting up easier, but we stay up late to watch one more episode of "Stranger Things" on Netflix.  We know we should exercise, but it's hard, and sweaty, and this chair is pretty comfy and there's something new on Facebook that I haven't seen yet.

It often takes a lot of time to see results too, so the motivation has to be pretty strong to make yourself do things you don't really want to do. Exercise is one of those things we don't necessarily want to do. Yet research shows that vigorous exercise of 30 minutes or more at least five times a week is crucial for helping to keep cancer at bay. It changes the way that hormones are produced in the body and, it doesn't matter what kind of cancer you have. It's protective against almost all of them. We aren't talking about taking a 30 minute stroll. It has to be vigorous enough to make you feel almost like you are jogging - about 3.8 miles per hour, and you have to do this more than once or twice week. You can't just do a long, hard day on the weekend and expect it to count. It has to be more days than not. Anything less is just not effective. Isn't that annoying?

Of course, I've known for years that exercise is important. I've flirted with biking, walking, stair climbing, jogging, and such on and off over the years, but I've never developed a steady, long-term habit. You'd think the potential to die from cancer would be a strong motivating force for me to keep at it, but that just doesn't seem to be enough.

Today is my birthday. I've never been a big "celebrate my birthday" kind of person, but the reminder that birthdays are not foregone conclusions makes a person rethink things. So, I'm going to celebrate this birthday by setting some goals. I want to be able to run a mile without needing to stop.  I want to be more generous. I want to find ways to make people smile.  I want to be able to do at least 15 push ups (full Russian style). I want to give more than I get.  I want to write more songs.  I want to have another birthday. And then another. And then how about a few more?

I bought a Fit Bit as an early birthday present. Goals are good motivators, but it turns out that instant gratification is pretty powerful. It's a little silly that it takes a plastic band around my wrist telling me how many steps I have gone and how many "active" minutes I have completed today to get me out the door and moving, but it seems to work where fear of potential death does not. Crazy, huh?  I have been out walking, briskly, almost every day since I got it. Apparently, a little Huzzah! vibration on my wrist when I meet my step and activity goal is just what the doctor ordered. I guess we all just need someone to remind us of our goals and to tell us, occasionally, that we are doing a good job.

I'm trying to take the long view. I'm trying to set into motion the things that will make me healthier and life even better. I'm trying to take a page from Charles Loring's playbook and think about how to make this world a more beautiful place. Set enough aside to share with others. Pick up that piece of trash in the street, plant flowers, walk in the community every day and get to know my neighbors. Each little thing contributes to making life a little better.  Little things, done every day, add up to big things down the road.

Whatever we are doing that is hard, be it wanting to run a marathon or walk a block, or maybe even just wanting to get through to the next week, look at today. Look at what you can do today. Know that your effort today will pay off in some way. We may never even see the results for a long time, but we know that some good will have been done along the way.

And by the way, you are doing a good job.

Monday, August 15, 2016

Mental vs. Physical

Hiking in the Olympic Mountains

Seven months ago, things were not looking so good. I could not go up stairs without getting a little out of breath due to tumors all over my lungs. I also had cancer in my hip and one of my lower vertebrae. Oh, and my stomach still hurt from my liver biopsy, but that was the least of my concerns.  I was in chemotherapy treatment with no clear idea of when I would be done, and I had no real idea if the treatment was going to be effective.  So what did I do amidst all of these physical challenges and question marks?  I charged full steam ahead and planned an active family vacation of hiking in Olympic National Park and sea kayaking for four days off the coast of Vancouver Island.

I certainly had a few cautious thoughts, and I wasn't at all sure I would even be able to go on the trip like this several months down an uncertain road, but I reasoned that I could always take it easy and scale back if it was getting to be too much, and I had to trust that my health would be improved by the time vacation rolled around. Still, I was a little uncertain if maybe I had bitten off more than I could chew.  

In our first week of vacation, Lanny and Jasper went out on a fishing adventure with our friend, Tony and his son while his wife, Nadine, and I planned some mountain and coastal hiking.  She and I have gone on many backpacking adventures together, but we were preparing this time to mostly car camp with day hikes since I just wasn't sure how much my compromised body could handle.  But I wasn't ready to give in that easily.  I decided to believe that I could do more. So our last minute plans included a 3+ mile hike, with fully loaded backpacks, out to the coast to do some camping at Cape Alava.

And yes, it kind of sucked, just as I kind of knew it would. I know 3 miles doesn't sound very far, but just carry 20 to 25% of your body weight for 3 miles and then tell me how far that is. Trust me. It's plenty far for someone whose sole form of exercise is walking, yoga and biking 5 blocks to yoga.  But even though it was physically hard, it wasn't as hard as I imagined it would be. I took it step by step, and I was surprised at how much energy I had. Over the course of four days, we ended up hiking over 21 miles, with a little more than six of them carrying a full backpack. And the rewards for those efforts were immense with mountains for miles, majestic towering cedar trees in ancient rainforests, and amazing sunsets over the vast Pacific Ocean.

Lanny, Jasper and I continued our adventures by heading to Vancouver Island and taking part in a 4 day sea kayaking trip in Johnstone Strait. I will admit that, as far as camping goes, it was pretty cushy with all meals provided by our fabulous guides, covered tents on platforms, a covered dining area, hot outdoor showers, and a wood-fired hot tub. But it was still plenty active with about 15 miles of kayaking, a few cool rainy days, and leaping off of the rock cliff at camp into the icy cold water so that we could climb back up the cliff and enjoy the splendor of the wilderness hot tub. We were lucky to have a fabulous group of people on our trip to share the experience with, and we saw orca whales, humpback whales, dolphins, porpoises, bears, bald eagles, sea lions, harbor seals, and countless sea stars, jellyfish, anemones and urchins. It was totally worth the tired arms and shoulders, and I kept pace with everyone without too much effort.

I discovered something important on these adventures. We are mostly limited by our beliefs. The mental hurdles are often far more difficult to overcome than the physical hurdles. Yes, sometimes the physical part is really, really hard, but if you believe you can do it, you probably can. If you don't believe you can do it, you will probably never even try.  And you will miss out on so very much if you don't try.

You are so much stronger than you think you are. Believe it.





 

Thursday, June 23, 2016

Connections


This past weekend, I went to my 30 year high school reunion.  It's a little hard to believe that 30 years have already passed since I graduated from high school, but time has a funny way of whizzing by in the blink of an eye.  The passage of time was evident, however, as I sifted through memories to put names and faces together. I was thankful for the name tags that included our senior pictures as many of us had changed a lot.  I know that I, personally, looked a lot different from my high school photo.  Remember, this was 1986 and big, curly hair ruled the day.  It's quite a contrast from the sleek 1/4" long white downy hair that currently adorns my head. Although many of my classmates already knew about my cancer journey through Facebook, those that didn't quickly put two and two together based on my hair.

I was a bit surprised at just how excited I was to see all of my old classmates.  After all, many of them I haven't even thought of in thirty years. In fact, there were probably a good number of people that I never really talked to even when we were in high school together. I'm from a pretty small town of about 12,500 people with only one middle school and one high school. Our class was small enough that we all sort of knew who everybody was, but it was big enough that we weren't all good friends. We all had our own little tribes that we tended to stick with, and some of us may only have encountered each other in the hallways of our school.

Despite the fact that I had almost nothing to talk about with some people, aside from the obvious, "where do you live now" and "do you have any kids" questions, I discovered that it didn't matter at all. I was still really, really happy to see everyone, even if I didn't say a single word to them all night. Every person in my class is a part of my history. We all shared a common experience that binds us together in ways that are hard to articulate. I spent the most formative years of my life with these people. It dawned on me at one point, that there were many people that I had known since I was 6 or 7 years old. Life has taken us all down different pathways, but as we danced to all the old songs and laughed with each other, I still felt connected to everyone there. They all played a part in making me who I am.

Cancer has opened my eyes just a little bit wider than they were before.  I appreciate the connections even more. I see my own energy and the energy of those around me in a different light, and I am beginning to understand just how much everyone I interact with contributes to my sense of self and well-being.

Today, I had another infusion day and we had an appointment with my oncologist (who also happens to know one of my classmates - their kids go to school together - more connections). We received good news that I am still having a positive response to treatment with stable to shrinking tumors. Some have disappeared completely and everything continues to move in the right direction.  We expected, based on my tumor marker numbers, that this might be the case, but it is always a relief when the scans match our expectations. My Dr. is extremely pleased and intends to keep me on what is appearing to be a very successful treatment regimen.

I, of course, wanted to share this great news with everyone, and I thought again about all of the people I am connected to, many of whom I have never met personally, and how much they all contribute to my state of being. I hear people tell me that I am strong, but I am not strong enough to make this journey alone. I have the strength of so many people walking with me.

The connections we make in our daily lives may not seem very important at the time, but those community connections matter. We never quite know what impact we may have on somebody, even if it isn't obvious. We are all so much more connected than we realize. I was grateful to be reminded of that by my classmates, and I am grateful every day for those that walk with me and keep me strong. If you are reading this now, that means you.  I am grateful for you.




Tuesday, June 7, 2016

Forgetting

The human body and mind are pretty amazing.  We, thankfully, have the ability to forget physical pain and discomfort. We remember it on one level, but as long as we feel good now, we tend to forget how awful we may have felt previously.  It's why women are willing to go through childbirth more than once. It's why people who swore up and down on a Sunday morning that they would never drink that much ever again, end up drinking the same amount the next Saturday. It's why people who have been sick and then get better tend to fall back into the same old habits that may have gotten them there in the first place.

I'm trying not to forget.

As the cancer recedes and my body begins to recover from the cancer and from the treatment, I'm trying not to forget how much my chest hurt from coughing so much. I'm trying not to forget how much my heart sank and I tasted the fear in my mouth when the emergency room doctor asked me if I wanted my son to wait outside the room while she told us my x-ray results.  I need to remember the crushing fatigue that would hit me three days after every chemotherapy treatment. I need to remember that I would be out of breath from climbing the stairs.

I need to remember these things because I don't want to grow complacent. I don't ever want to take for granted how amazing it feels to breathe deeply. I don't ever want to take for granted the gift of seeing my son grow taller.  I do not want to take for granted the ability to sit in the sunshine and have enough hair on my head to keep from getting a sunburned scalp. I especially must never forget the tremendous kindness and love that has been directed to me and my family. I have been humbled to the ground by so much generosity, that I may never find a way to repay it all.

I need to remember every act of kindness so that I can remember to give that same help to others.

Everybody encounters suffering of some kind.  I have had people tell me they feel guilty complaining of small difficulties in their lives because "it's nothing compared to what you have been through."  But my answer is that a challenge is a challenge no matter how big or small. We need to share our challenges with each other because we need each other to overcome them.  None of us gets through this crazy world without facing some serious pain, both mental and physical.

I am grateful that I don't really have any physical pain now aside from a few minor chemotherapy related side-effects that are diminishing daily. But I don't want to forget that pain because I can learn from it. I can learn what to do to try to avoid more of that pain in the future. And I hope that I can use the memory of that pain to lighten somebody else's load, just as mine was lightened.

We often forget that we are more alike than we are different. We often forget that we are all just a part of one great big whole. We often forget that we are here to help each other.

I'm trying not to forget.



Thursday, May 12, 2016

The Greatest Gift

Sometimes we are oblivious to how lucky we are.  We often don't realize how good we have it until something goes wrong. But every once in awhile, we have our eyes opened without having to go through fire and flame, and we can truly appreciate the good things in our lives and fully understand just how fortunate we are.

When I was a student at the University of Minnesota, there were a lot of requirements for graduation that I was totally annoyed over.  I just wanted to take classes that were part of my major and graduate, but the College of Liberal Arts expects you to be a well-rounded person, so there were lots of additional requirements.  I was always trying to find classes that would satisfy more than one requirement, so I was excited when I found a class called "Biology of Women."  Not only would it fulfill one of my science requirements but it also fulfilled a "minority studies" requirement or some such thing. I also figured it would be relatively easy because I liked biology and, hey, I was a woman, so it seemed like I wouldn't have too much new to learn, right?

Wrong. I was surprised at how much of the class discussion turned into how women in our society are treated, and I was unprepared for some of the difficult stories that some of them shared. I learned pretty quickly that my life had been easy compared to many of my classmates, and that my experience growing up was very different from most.  It really hit home when we had to write a paper for class about how our gender influenced our choices as we grew up.  I wrote about how I had never felt that my gender would keep me from doing anything.  My parents were wonderfully supportive of me and my sister all my life. We were never told we couldn't do something because we were girls.  We were always told from a very early age, by both of our parents, that we could be anything we wanted to be.

I wrote about my wonderful mother, and how she and my father were true partners who both spent time with us, who nurtured us, and who laughed with us.  My mom was usually the person who fixed things, who read the instructions and put things together. She was the one who planned out the vacations and always knew what to do when things went awry. She always found a way to see the positive, and still does to this day. She was always, always there for us. She showed me that great strength comes through great kindness. She was living proof that women were strong, capable, and able to make things happen.

When I got my paper back from my professor, I read through her comments.  She wrote "You are very lucky. You had the rare gift of a happy childhood."  I was a little dumbstruck by her comment. Was it really so rare? And then I started to recall some of the stories that had been shared by others; stories of abuse and rape, stories of abandonment, stories of such hardship that I had never encountered. I was overwhelmed with gratitude to my family for sheltering me from so much of the pain that this world can bring. I remember calling my parents that night just to say "thank you".

Our beliefs shape us. When you grow up believing that life is good, and that you were meant to be happy, you just don't accept other outcomes. If you wonder how I stay positive despite everything, if you wonder where I get my strength and my resilience, my answer is that I was given the gift of love with no strings attached. I was given the gift of confidence in my abilities. I was given the gift of believing that everything would always work out. I was given the rare gift of a happy childhood.

I wrote this song for my parents a few years ago. I'm sharing it now for those who would like to hear it.  The recording is very low quality as I did it on my Ipad in Garageband, and my voice isn't as strong as it used to be, but I hope you enjoy it anyway.








Thursday, April 28, 2016

Getting Back to "Normal"

This week was the first week since the beginning of January that I did not have to go in for any kind of chemotherapy infusions.  I went to work every day. I didn't have any needles jabbed into me.  I didn't have to pack a bag full of snacks and reading material to while away the hours in the infusion chair.  I just had my usual routines.  It was refreshingly normal.  

My new version of normal includes a new treatment plan that should be a lot easier.  I will now only have to go in for infusions once every three weeks, and I will only get Herceptin and Perjeta each time. These drugs are much less hard on the body in almost every way. I should start to see my hair coming back and, hopefully, an end to the sensitive fingers and toes.  I can already tell a difference in my energy levels now that I'm no longer getting Taxol.

I will still get an Xgeva shot for the cancer in my bones as well, but I will only get that on every other visit.  I am also on a new hormone therapy pill called letrazole since my cancer is fueled by estrogen. Letrazole is known as an aromatase inhibitor and it works by reducing the amount of estrogen the body produces.  So far, I haven't had any side effects from the pills after taking them for a week, and I'm hoping it stays that way.

How long will I continue on this treatment plan?  Well, that's anybody's guess. We'll keep at it for as long as it seems to be keeping the cancer at bay and as long as my heart stays strong. At this point, things are looking good. My CA27.29 tumor markers are now down to 68 (from a high of 850, with normal being 0 to 37), and my CEA tumor markers are down to 3.5 (from a high of 48 with normal being 0-2.5).  Maybe next time those numbers will be even closer to normal range.

And there's that word "normal" popping up yet again. Normal is a bit of a loaded word, isn't it?  What, exactly, does normal mean?  We like normal because it is familiar. We like normal because it feels safe. It's a day where everything sort of turns out the way you expect it will. It's a day with no real surprises. But it's all relative, isn't it.  Our expectations for what is normal are going to vary from person to person and from day to day. To quote Morticia Adams, "Normal is an illusion. What is normal for the spider is chaos for the fly."

Of course, it's also normal for the fly to get caught in the web. That's what life is. Spiders eat flies. The fly just didn't expect it to happen to him. Maybe there's a lesson there for us all. We are all going to hit that spider web, but the more we struggle against it, the faster we get entangled, and the more stuck we feel.  Maybe if we are a little more calm and peaceful, the spider won't notice we are there.


 


Friday, April 15, 2016

Turning the Page


Today marked a major change in my treatment plan. My oncologist confirmed that I can now quit the beastly Taxol chemotherapy. Although I've tolerated the drug really well, the last few rounds have made me really feel the cumulative effects of all these weeks of treatment. It's harder to bounce back from the fatigue, some of my toes are now completely numb, and my fingernails are so sensitive that I have trouble opening a food container. I know lots of people have much worse scenarios with chemotherapy, so I feel pretty lucky all things considered. I can still work. I can still do push-ups (only three in a row, but hey, it's a push-up and they are hard), and I can still live a pretty normal life. I know it takes a big chemo beast to tackle the toughest monsters, but I wasn't relishing the idea of allowing the beast to continue it's weekly rampage of indiscriminate destruction.

I didn't get a chance to meet with my Dr myself, but my husband ran into her in the hallway and chatted for a few minutes. She told him she was very pleased with my scan results and said that, at this point, the last three Taxols, including the one today, probably had a very exponential effect, and if I were to get a scan today, I would see an even greater difference. I will continue to receive Herceptin and Perjeta once every three weeks for the foreseeable future, but maybe even someday I can stop that for awhile too. Although these drugs are a lot easier than Taxol, they are not totally without side effects, so this was also very encouraging to hear. She said that Perjeta, the newest drug, is really doing some amazing things for her patients, and she thinks it will do some amazing things for me too.

This was all wonderful news to hear, and it really feels today like I have now turned a page and have finished one chapter and am starting on a new one.  The whole previous chapter started out kind of scary, and I was feeling a little stuck there once in awhile. You see, metastatic breast cancer isn't known for happy endings. In fact, when I scanned the other books on the breast cancer shelf for clues as to what my story might turn out like, I wasn't too thrilled with what I was finding. So many plot changes, ups and downs, false starts and so much potential drama and horror. I don't really like drama. I could barely even stand to watch the Lucille Ball show when I was younger. Even though it was a comedy, I just knew she was going to make some terrible mistake and get into all kinds of trouble, and I couldn't take the tension! I don't like horror stories either. I still get shudders over movies like Silence of the Lambs. In fact I got chills just typing the name of the film.

But I now realize that every story is different, and here is the best part. I am in charge of writing my story, and I can make it be anything I want it to be. Isn't that fantastic? We get to make it up as we go along. Since I don't like scary stories or super dramatic stories,  I don't want to write one like that.  Of course I know that sometimes you can't control every aspect of the story, and a little drama is going to sneak in even if we don't want it too. But that's the way that stories go. I guess every story needs a little bit of drama to keep the story interesting. Sunshine and daisies are great, but the daisies can't come up without a bit of rain and those spring thunderstorms beforehand.

Still, I think a little drama goes a long way, so I'm going to try to keep writing a story that makes me happy. I'm going to try to keep writing stories and songs that make others happy too.  I'm excited to turn the pages to see what the next chapter brings.  




Tuesday, April 5, 2016

Suck Up and Take Your Medicine

 

My long-awaited scan results came back last Friday.  I tried not to be too attached to any outcomes.  I, of course, wanted the scans to be crystal clear, but based on the tumor markers from a few weeks ago, I knew it was highly unlikely. My husband and I waited for the nurse practitioner to join us in the exam room to give us the news, but neither one of us was quite certain what we were going to hear. I was pretty confident that everything had shrunk a lot, I just didn't know how much.

My nurse clearly has done this a lot because she didn't keep us guessing. She came in right away saying "I have really good news to share with you!"  My echocardiogram, as expected, came back totally normal, which is great. That means I can keep getting the Herceptin and Perjeta drugs without worrying about my heart function.  Although they can cause some cardiac toxicity, these are the key drugs for keeping the kind of cancer I have at bay, and it would have been a serious blow if I were not able to continue with them.

The real question, however, was what the PET scan showed. The PET scans show how much of the radioactive glucose (FDG) was absorbed by the tumors. They call this FDG Avidity and they measure it by a scale called Standard Uptake Value (SUV).  You didn't know you would get a PET scan lesson today, did you? Basically, the larger and more active the tumor is, the brighter it glows.

The scans no longer show uptake in the lymph node by my thyroid. They show that the lesions on the bones are almost gone. They show the liver lesions are almost gone, with only one liver lesion that is still somewhat active with an SUV of 10.6, but it was previously 16 and the lesion is half the size it was before. They show the lung tumors are almost gone, with only one that had any real FDG Avidity, but again, it is half the size it was and has reduced in activity by about 75% from an SUV of 15.4 down to 2.7.

This is all really good.  Really, really good.  The nurse called it a "wonderful" report. She thought I might even be able to quit the Taxol going forward. The nurse gave me a big hug and told me I was doing a great job. It was a very good day, and a very good weekend.  

I learned yesterday morning, as I was driving to work, that I don't get to quit the Taxol just yet. My doctor wants me to do at least two more infusions. I wasn't thrilled about that. This news happened to coincide with my low point post treatment and I was extremely tired, my fingers and toes were numb, and I was feeling pretty down. And then I heard the song in the video above.  I have a big playlist of songs on my phone that inspire me, that make me happy, or that just make me want to sing.  I hook it up to my car stereo and let it play at random. Just at that moment when I was starting to feel sorry for myself, Take Your Medicine began to play.    

You can take it in stride, or you can take it right between the eyes.
Suck up, suck up and take your medicine.
It's a good day, it's a good day to face the hard things.

Pulled my fist from my mouth.
I beat myself for a quarter century.
Remind, remind that it's bigger than me.
Dissolve, dissolve into evergreens.


It was just what I needed to hear at that moment. It's easy to be positive when I feel great. It's not as easy when I've been hit by the Taxol truck. It's awfully tempting to fall prey to the siren song of self-pity, but I know it doesn't do anybody any good, least of all me.  The song reminded me that it's all temporary. Everything dissolves away eventually, even the hard things. The Taxol truck may have hit me hard, but it is also making it possible for me to travel farther down the road to remission.  I just need to suck it up for just a little bit longer. Nobody likes the hard things. But I think the hard things make us stronger in the long run.

Wednesday, March 30, 2016

May the Odds Be Ever In Your Favor



The odds are not always in our favor.  Back in 2007 when I was first diagnosed with breast cancer, my oncologist went over my pathology report with me and told me that, if I did surgery, chemotherapy, radiation, and hormone therapy, I had a 40% chance of surviving, disease-free, for 10 years.  While those are not the absolute worst odds, they certainly are not the best.  Still, I fully intended to be one of those 4 in 10 who beat the odds, so I followed every recommendation and was totally optimistic that I would be throwing a party on my ten-year anniversary of being cancer free. I only made it eight years.

Sometimes optimism is not rewarded, but is that really a problem?  Would my life have been any better had I been anxious and nervous about a recurrence over the last eight years? What good would the worry have done?  What possible benefit would it have given to my life? I can't really think of any, so optimism tends to be my default position.  I always assume things are going to work out, until they don't work out.  And even when they don't work out, I still somehow assume that they will, eventually, work out.

I have to be honest and tell you that the odds are, once again, not in my favor. If you had seen the first PET scan I had at the beginning of the year, you could be forgiven for thinking some dark thoughts about my prognosis. A PET scan works by having the patient drink a bunch of glucose solution. Cancer cells love glucose, and they draw it in quickly.  Then the patient is injected with a special dye that has radioactive tracers in it.  Those areas that absorbed a lot of glucose, mainly the cancer cells, will glow brightly in the imaging result from the tracers. I had an awful lot of very bright spots. Too many to count. My scans looked a bit like a Christmas tree.

I had another PET scan on Tuesday to assess the effectiveness of my treatment so far.  I don't know what the scans will say. Although my tumor marker numbers have been going down rapidly, the odds are still stacked against me. I don't know too many other people who have had a total response after just 12 chemo treatments.  My oncologist has already hedged her bets by scheduling me for a Taxol infusion this week when I go in for my Herceptin and Perjeta infusions. She can always cancel it but she knows that the odds are that I will probably have to go a few more rounds of the weekly Taxol. I know of some women who have had weekly Taxol infusions for 5 to 6 months or more. I know that some women never reach remission.

I can't say that I haven't had some "scanxiety", but I also believe that our bodies listen to what we tell them. I think our minds are more powerful than our bodies. So I've been telling my body that I am strong, I am healthy, and that I feel great!  And you know what? It mostly works! Just try yelling it out to yourself right now with gusto and sincerity! Don't you feel just a little better? Personally, I find a good fist pump to be an especially convincing addition.

I'm ignoring the odds. I'm going to keep telling myself that everything is going to be OK. Because no matter what happens, it usually is.





Wednesday, March 16, 2016

Numbers are just Numbers

I got my CA27.29 tumor marker numbers last Friday, and I was pleased to learn that they went down further to 141.  That's down from a high of 850 when I started. I also had another tumor marker called CEA that was tested. The normal range for this marker is 2.5 or less, but I started at 48.1, and now the number has dropped to 7.6.  It's all very good news with both numbers dropping by about 85% from the beginning.  But I guess I'm getting greedy as I really wanted to see my numbers even closer to normal. Isn't it funny that just a few weeks ago, I was thrilled to have seen my CA27.29 numbers drop to 408.  But now I'm sort of disappointed with 141. We always want just a little more, don't we?

There are lots of possibilities for why the numbers aren't yet in normal range, and that's why the markers alone are not used for diagnosis or treatment decisions. What I need to focus on are all the obvious signs that cancer is retreating. I need to remember where I was just 11 weeks ago.

In those early days just after my diagnosis, I was feeling pretty weak as the tumors in my lungs must have been growing pretty quickly. They caused me to be seriously short of breath and susceptible to terrible coughing jags. We were up at a friend's cabin near Lake Superior over New Year's Day, and I took a walk up to a scenic ridge that has always been a favorite spot for me. I had to stop several times on the way up to catch my breath and let my energy rebuild. It took me twice as long to reach the ridge as it normally would, but I needed to get there just to prove to myself that I could still do it. Standing on top of that ridge, looking out over the deep dark blue of Lake Superior, I tried to be positive, but I felt a bit apprehensive over what the year would have in store for me. I knew I would be starting chemotherapy soon, and I knew from past experience that it probably wouldn't be easy. I already felt pretty lousy, and I wondered if I would ever feel really good and really strong again.  

I was reminded of that moment this past weekend. We were at our friend's cabin once again, and I found myself climbing that very same ridge. Even though it was a Saturday afternoon, which is usually my point of lowest energy during my chemo cycle, I didn't have to stop once. I reached the top with a smile on my face as the sun shone down on me through the pine trees, and I felt an enormous up-swelling of joy and gratitude as I gazed out at the sparkling blue lake. I realized that it didn't really matter what the numbers were, because what really matters is how I feel. I'm still not in perfect shape. I still have some weird tightness in a couple of spots in my lungs, and I still have a bit of pain where my liver was biopsied. I still have a bunch of scraggly fuzz for hair, and I still have a weird metallic taste in my mouth from chemo. But here's the truth. Even though I'm still in chemotherapy, even though my numbers aren't "normal" yet, I feel good again. I feel strong again. I feel like me again. I'm glad to be back.




Sunday, February 28, 2016

The Weight of Attachments



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When I was in yoga teacher training, I learned a meditation and visualization technique for overcoming obstacles.  I found it tremendously helpful in helping me to find my teaching voice and to be more confident in my ability to communicate.  I have been using this same practice at each of my chemotherapy sessions to aid me in climbing over the obstacle of my cancer. The technique is nothing complicated, yet I am always amazed at the insights I glean from this simple practice, and I am often surprised at the direction the meditation takes me.

I always have one full uninterrupted hour during chemotherapy when I am getting my Taxol infusion, so I put on some headphones, lean back in my chair, close my eyes, and start with a simple survey of the body, systematically relaxing everything from head down to toes. I then follow my breath, letting it become even and relaxed.

The meditation begins as I visualize a garden gate.  This gate will open only for me. Nobody else is allowed in my garden, and the gate is sealed behind me. I follow the pathways of the garden that lead me to a set of stairs that brings me to the door of a room. Sometimes the stairs go up, sometimes they go down. Again, the door to this room can only be opened with a key that I possess or with the touch of my hand. Most of the time when I do this meditation the room is not very fleshed out. It's usually a little bit like the scene in Harry Potter and the Deathly Hallows, when Harry momentarily dies and is in a very white soft looking version of Kings Cross Station.  There is always a set of french doors in my room that open to the world. At this point, I visualize whatever my obstacle is and hold it in my hands. I then throw the obstacle out the window and watch it fall away.

When I first started doing this meditation at my initial chemotherapy sessions, my cancer manifested itself as a black, gooey, tar-like substance that covered my hands and was so sticky, that there was no way I could simply throw it out the window. I had to enlist the help of a brilliant and cleansing stream of liquid light that helped to take it away and wash my hands clean.

Each week, the visualization of the cancer in my hands has changed. It has become less sticky over time, and just a little easier to release out into the world. This week, however, was different. This week, the cancer was not black or sticky. It was relatively easy to handle, more like a smooth, malleable clay that I formed into small balls. This time I didn't throw them all out the window but I instead put them in a woven basket.  As I placed them in the basket, I had a startling realization.  I knew at that moment, that the real obstacle at this point was not my cancer. There was something else that needed to be released.

I have been, without fully realizing it, mourning the loss of the me that was "before metastatic cancer". I am no longer that person who can just eat or drink something without thinking too much about how it will impact cancer growth.  I am no longer that person who can confidently put age 92 in her retirement planning calculator. I am no longer that person who beat cancer. All the plans I had for that person are now shrouded in uncertainty. I was pretty attached to that person and the plans I had made for her.

I recognized in that moment that I was suffering because of the attachments and the expectations that I had for myself. I had to allow myself to let go of my attachment to those plans, and I had to embrace the idea of simply walking the path each day as it unfolds. I was reminded that none of us is guaranteed a thing. We suffer because we try to hold onto that which has no permanence, that which has no guarantees.

So, I held in my hands the hurt, the pain, and the sorrow of lost expectations, and I rolled them into little heavy balls and put them into my basket. There was the cancer, the sorrow, and the expectations, all nestled in the basket, waiting for me to figure out how to release them out the window. I didn't quite know how to let them go, so I walked to the window and held the basket in my arms, contemplating what to do.

At that moment, an elderly grandmother of sorts came to my window. She was a beautiful old woman with long gray hair framing her face and kind eyes full of wisdom.  She took my basket from me. She gave me a hug, smiled at me and touched my cheek, and then disappeared with my basket in hand. I don't know who she was, or what she represents, but I felt the weight of those attachments disappear. I walked out of my garden feeling the sun shine on me, and a deep peace within me. I even found myself with a little spring in my step all afternoon.

It is entirely possible that I may beat cancer again.  It is entirely possible that I will live to age 92 or beyond. I am still making plans for the future even though I don't have, and have never had, any guarantees. None of us do. But what we do have is today. We do have this moment right here, right now. We do have the sweet ability to breathe in and breathe out. Whatever happens, we can live our lives as well as we possibly can today.  We don't have to be so intent on a destination. We can just travel lightly and enjoy the view on the journey. Maybe we'll arrive at a place that is better than what we had expected.

Friday, February 19, 2016

Climbing Back up the Mountain with Good News

Last week was a difficult week for me. I woke up the day after my chemotherapy treatment feeling much more tired than usual.  I began to experience some severe lower GI issues that lasted multiple days and resulted in me becoming dangerously dehydrated and lacking any real desire to eat. I gradually improved through the week, but I still felt tired every day.  Just getting up the stairs at my office to get to my desk was enough to have me out of breath, and I wondered how on earth I could keep climbing this mountain with so little strength.

I was worried that chemotherapy this week would be all the more challenging if I was starting from several paces back.  My doctor was worried that one of the drugs I'm getting may have been the culprit for my intestinal distress, but the more we discussed it, the more we realized that, perhaps this didn't have anything to do with my treatment. As we talked about when the onset of symptoms started, it dawned on us that we may have made a rookie mistake. Perhaps, the Chinese Buffet where we had lunch at after chemotherapy last week was a very poor choice for an immune compromised person to have lunch. Perhaps that shrimp had been sitting out just a wee bit longer than it should have been.  The lesson has been learned. We will forevermore avoid the Chinese Buffet.

It's truly amazing what IV fluid replacement will do for a person. We added fluids to my treatment regimen this week, and I left chemotherapy yesterday feeling worlds better than when I walked in. In fact, I feel like I'm back to my normal self again. Well, the new normal, anyway.

Truthfully, nothing ever stays normal for long.  If there's one thing we can always count on it's that things are bound to change.  What's normal one day is totally abnormal another day.  For example, I never thought it would be a normal occurrence for me and my husband to own matching superhero socks. But now we have several pairs.

Change can be a very good thing. It's a very good thing when your doctor calls you early on a Friday morning to tell you that your tumor markers have changed again.  It's an extremely good thing when she tells you that they have gone from 408 down to 218.  That's a drop of 640 points from before I started treatment, and I'm only halfway through. We like this kind of change.

Last week at this time, I was feeling like I had fallen down the mountain. This week, I'm feeling strong enough to climb back up towards the top.  Thank you to everyone who keeps throwing me ropes and helping to pull me up. I'll get there as soon as I can.


Thursday, February 11, 2016

Halfway There

Today marked something of a milestone for me. I am now halfway done with my weekly Taxol infusions.  I've got six under my belt, and only six more to go.  So far, I've tolerated it very well. I get a little tired on Saturday nights and Sunday mornings, but, usually by Sunday evening I've perked back up and am ready for another week.  My white blood cell and red blood cell counts have remained in, or very close, to normal range each week.  If it stays that way, I have high hopes that I can maintain my energy and get through the last half without too much drama.  Treatment will not end at that point, but at least the most toxic drug will be over.

Of course, chemo is not a picnic for me or my family. It's killing healthy cells in my body right and left even as I write this. I anticipate that, by the end of these 12 weeks, I will be experiencing some of the more difficult side effects. I've already lost the hair on my head, for the most part, and I'm OK with just wearing hats, scarves, and wigs. Although I confess that I had forgotten how truly miserable it is to wear a wig, so you won't see me in one much. I am not terribly vexed about being bald other than it's pretty darned cold in Minnesota in February. Much harder is losing eyebrows, and eyelashes.  It's amazing how much they help to keep your eyes clear.  And you really don't realize just how much your nose hair is of benefit to you until you don't have any.

The hair loss is really one of the more minimal side effects. I will also, likely, have tingling in my fingers by the end (neuropathy), and very sensitive fingernail beds.  Taxol, and the Perjeta I get every three weeks are pretty rough on the GI tract as well.  I have lost four pounds since diagnosis, which is pretty noticeable for a person of my small stature.

Still, there are some good things about chemotherapy days.  First, I have some solid evidence with my tumor markers that the treatment is doing what it is supposed to do.  I also feel quite a difference in my lungs and have found that my cough is tremendously diminished.

Another good thing is that one of my premeds is a steroid called Decadron.  There is most definitely a reason why athletes try to cheat and use steroids to enhance performance. They really do provide a tremendous boost of energy. I generally feel great on chemo days because of my nice little packet of Decadron.

But probably the best good thing is that it gives me a little extra time each week with my husband. Just the simple pleasure of being able to have lunch together once a week is a welcome event, and I'm grateful for this as a side benefit of chemo days.

It is hard to be the person going through cancer treatment, but it is just as hard, if not harder, for the person who has to watch someone they love going through it. You wonder what you can do to help, but feel powerless. But perhaps you don't know that your presence is enough. Your expressed concern is enough. Your love is enough.

I am so fortunate to have so many supporters in my life.  While I would never wish cancer on anyone, I would wish for everyone to experience even a small fraction of the love and kindness that I receive daily. Every simple kindness creates a ripple effect that extends out so much farther than we may ever realize. I may never be able to give back as much as I've been given, but I will do my very best to let all the ripples of kindness I have experienced continue to expand their reach.  Clearly, I need to stick around for a long time.  I've got a lot of ripples to make.

Friday, January 29, 2016

Headed in the Right Direction

The last time I went through treatment for cancer, I vowed that I would never do chemotherapy again. I had one of the most aggressive chemo regimens that existed at the time, and it was very challenging.  I tried to stay as positive as I could, but I have to admit that there were days that I felt like the bottom of the garbage pail. I wondered the whole while if I was doing the right thing. I had no active cancer as far as we could tell, so there was no way to measure what the benefit of the treatment might be.  I still have no idea what the actual benefit may have been. Perhaps it kept me cancer free for longer than expected. Perhaps not.

Of course, when faced with metastatic cancer, I had to accept that chemotherapy was going to be part of my life once more, but this time it is a bit different. Not only are there some different drugs and an approach that seeks to be a bit more gentle, but this time I do have active cancer. This time we can see just what the benefits of treatment might be.

Cat scans are expensive and they expose you to additional radiation, so you can't have scans every few weeks. Instead, they measure tumor markers. A tumor marker is an antigen that is produced by the body in response to cancer, or is produced by the cancer itself. These markers can be used to evaluate a person's response to treatment. Normal levels of this specific antigen for breast cancer are usually between 0 to 39. We tested my blood for these markers at the beginning of treatment, and the numbers came back at a jaw-dropping 857. My doctor told me not to be scared by that number, but it's hard not to be a little concerned over a number that is more than 800 points bigger than it should be.

My oncologist did another blood draw just before treatment on Thursday. She wanted to see if my numbers had dropped at all.  Ideally, if treatment is effective, the numbers will begin to drop. She warned that it can take two full cycles before it happens, and, at that point, I had only finished one cycle (each full cycle is 3 weeks long).  She also warned me that they can even go up before they start to go down, but I was really hoping to see a nice drop in the numbers just to give me a sign that the therapy was beginning to work.

First, can I just say that my oncologist is a wonderful woman. She promised me that she would call me personally with the numbers when the test results came back.  I got a call from her at 6:58 PM on a Friday night.  How many doctors do you know that are willing to do that?  Of course, she was probably excited to share some good news with me, just as I am excited to share some good news with you! My tumor markers did go down. In fact, they dropped all the way to 408!  That's a drop of more than half, and that was after just one cycle of treatment. While that number is still high, it is most definitely headed in the right direction!

It is a tremendous relief to know that the treatment is working. I may be shedding my hair faster than a golden retriever in the springtime, but that's OK. I don't really mind right now. 

Saturday, January 23, 2016

When Did I Stop Singing?

“In many shamanic societies, if you came to a medicine person complaining of being disheartened, dispirited, or depressed, they would ask one of four questions. When did you stop dancing? When did you stop singing? When did you stop being enchanted by stories? When did you stop finding comfort in the sweet territory of silence?

—Gabrielle Rotho 

I've seen the above quote before, but it really resonated with me this week. When did I stop singing? Somehow, at some point in the last few months, I had fallen out of listening to music on my drive to work and had been focused on news and talk radio. Instead of starting my day by raising my voice in song, I let my voice grow quiet, and I let the dark misery of the world news and political arena fill my car with their sad vibrations as I heard people fight each other and tear each other down.  

I used to write songs during my drive as well, but I haven't written a song for a long time. The last song I wrote was about my father-in-law which I shared at his funeral in September. It was the only song I wrote all year.  I haven't really felt like writing, or playing my guitar for a long while. I guess it should have been a big, bold, brightly-colored clue that something was amiss. I wasn't singing, I was allowing sad stories to dominate the airwaves, and I wasn't feeling terrific.  In fact, I couldn't really sing even when I wanted to, because my cough would interfere. 

Before last Thursday, I had almost forgotten what it felt like to feel fantastic.  But I got a good reminder on, ironically, a day that I was being pumped full of chemo poison. My treatment day this week started like usual, but something different happened this time.  Maybe it was the Wonder Woman socks I was wearing, maybe it was the steroids, or maybe it was the good energy of the nursing team and volunteer staff at the infusion center, but something inside of me changed. 

I realized that everything is connected, and I didn't want to see my own cells as the enemy.  As much as I might hate to admit it, my cancer cells are my own cells that have just lost their way.  They've tried, but they are just damaged.  Isn't that why people lash out and do awful things to one another? It's because they've been damaged in some way through hurt, pain, and loss. People can't be healed by being treated as an enemy.  A body can't be healed by being treated as an enemy either.  

So, I did the only thing I could think to do at that point. I channeled all the amazing love I've received from every one of you and I poured it into my body. I sent it down into every cell. I told the damaged ones that they did their best, but it was OK for them to let go now. And I felt fantastic. All day. 

I won't pretend that I feel fabulous all the time, because I don't.  I won't deny that I still feel scared sometimes, because I do.  I don't know what the future may hold, but here's what I do know.  I am singing again. 

Monday, January 18, 2016

Positive Emotions

Today, I was reading about what science is learning regarding the benefits of yoga, mediation and prayer on the human body, and I was struck by the following paragraph:

Scientists over at the HeartMath Institute have demonstrated that when a person is feeling really good, and is full of positive emotions like love, gratitude, and appreciation, their heart beats out a different message that’s encoded in its electromagnetic field, which in turn has positive health effects on their body overall. You can read more about that here.

As a practicing yogi, I've long been aware of the deep connection between our mental state and our physical state.  Yoga philosophy is all about integrating mind, body, and spirit, but it's easy to forget. When I don't feel especially good, or I am feeling a bit tired, it's tempting to just say "No, I don't think I'll get on my mat today. I'll just sit here and browse the web or read a book."  But, it seems that's exactly the wrong impulse. It never makes me more energetic. It never makes me feel better. 

Do you want to hear something interesting?  I've had a cough for about three months now due to the nodes in my lungs.  It becomes worse when I've been talking a lot or I walk out into the cold air.  Do you want to know when I never, ever cough? It just so happens, that the only time I never cough at all is when I'm teaching a yoga class.  

Isn't that curious that, even though I am exerting myself, even though I am talking nonstop all the while, I never cough, and I always feel good.  I sometimes will cough a little right afterwards, but during the class, I just don't have the impulse. It's almost as though I forget that I have a chronic cough.  Perhaps I am so very much in the moment when guiding a class, that there is no room for anything else.  Perhaps the guided breathing I offer calms my nervous system.  Or maybe, the love and gratitude and appreciation I have for the energy of my students makes my heart beat out a different message to my lungs. 

I am so overwhelmed each day with love and gratitude for all the wonderful human beings in my life. Your generosity and kindness fills up my heart. If love and gratitude can make a difference in curing illness, if those emotions make my heart send out healing messages to my body, then those cancer cells simply do not stand a chance. They are going to collapse from the vibrations.  Thank you, for making my heart beat so strongly. 

Wednesday, January 13, 2016

We Can Be Heroes

This week, my Facebook feed has been filled with tributes to David Bowie as the world mourns the passing of this talented man.  He was an icon of music and style, and his work transcended generations. He leaves an amazing body of art, music and film that he shared with the world. His lyrics encouraged us all to turn and face the strange, and it was reassuring to be told that we could all be heroes, even if just for one day.

It was not lost on me that cancer was the culprit.  Of course, we don't know just what kind he was battling as he chose to keep the news of his illness very private.  I imagine, if I were in the public eye as he was, it might be more appealing to keep this news to one's closest inner circle. As an artist, he may have wanted his most recent work to stand on it's own merits, without the soft whisper of melancholy coloring people's view of his music. I do not really know why he may have chosen the path that he did.  I just know that I could not follow that path.

I have been thanked by many people for sharing my journey so openly, but here's the thing.  I could not do this by myself.  I simply couldn't.  Do you know how much you all help me? Every kind word, every text, email or card, every comment of encouragement, and every hug is so profoundly helpful.  Every phone call or gift reminds me that I have so many people in my corner. Every invitation to spend time with you reminds me that life can and must continue as usual. Every meal offered provides sustenance to both body and spirit, not just for me, but for my family as well.

As we head in for my next treatment tomorrow, I am buoyed up by the knowledge that we are not alone. We do not heal in isolation, but in community.  Thanks to all the everyday heroes out there for having our backs.  Much love to you all.

https://www.youtube.com/watch?v=bsYp9q3QNaQ

Saturday, January 9, 2016

The Healing Journey Begins

And so it begins. I had my first chemo infusions yesterday. This was a day for all four drugs I'm getting, so Lanny and I showed up at the U of M Masonic Center at 8 AM and ready for action accompanied by every manner of electronic device possible to while away the hours.  This first visit was a temporary location for us, and we were there only because they did not have room for me at the oncology clinic I will normally go to.  They didn't want to waste a single day before getting me started.

The first day always takes longer than normal because they have to allow slower infusions and watch periods in between drugs to make sure that you do not have an adverse reaction.  They also do premeds before each infusion to help you tolerate the drugs better such as Benadryl and steroids.  I am happy to report I did not have any adverse reactions, except for about 10 minutes where my mouth felt like I had been walking through the Sahara desert for hours with no water.

Lanny kept me company all the while and brought in Chinese food so that I did not have to eat the hospital grade "turkey" sandwich that was offered.  I kept up on work emails, texted with a few friends, and napped a fair bit (I defy you to stay awake when you've had IV Benadryl).  We finally finished about 3:00 still feeling good.  I felt well enough to go our for a walk with Jasper when he got home, and I even did a bunch of laundry. Steroids are amazing things.

I, of course, am not leaving things up to just the chemo. Cancer cells can't proliferate in healthy terrain, and they can't thrive in the midst of Killer T-Cells. So, I'm eating all manner of vegetables and exercising as much as I can. I felt fine this morning so I went to a yoga class, and I'm now drinking an awesome juice concoction made with the ingredients below (romaine, kale, carrots, beets, ginger, half apple, tangerine, lemon):


I do feel a palpable presence in my lungs, and the nodes and spots seem to be pressing on certain areas.  I'm hopeful that, as the chemo begins to work it's terrible magic, it will be something I can feel changing.  At the very least, I seem to be coughing less than I was previously, so maybe it is already starting.

The results from round one:  DeAnn: 1   Monster: 0







Wednesday, January 6, 2016

The Next Steps

We are so deeply grateful for the outpouring of love and support that we have experienced in the past few days.  I wish I had the time and energy to respond to each one of you individually, but I hope you know that we read and appreciate every message.  I am beyond fortunate to have so many wonderful souls in my life.  Thank you.

I forget that most people have never been in cancer treatment world, and I have been asked a lot of questions as to what this treatment might include and how in the world can I have breast cancer in my lungs? I admit it is highly ironic that I do not have any sign of cancer in my remaining left breast, but I do have breast cancer in a whole bunch of other places. Here's how it works for those of you who like details.

In my first go-round, I was Stage III because there was not evidence that it had spread beyond the lymph nodes. However, cancer cells that break off from the primary tumor may be microscopic and can travel through the lymph system of the body. For breast cancers, it is very common for them to move (metastasize) to the lungs, liver, and bones.  Any time a primary cancer has moved to a different part of the body, this is considered Stage IV cancer. It is considered incurable, but that doesn't mean it is not possible to go into remission and achieve NED status (No Evidence of Disease).  This is the goal, and we have a new drug weapon now that we did not have the last time I went through treatment.

The arsenal of monster-fighting weapons will include the following treatment regimen.

Starting on Friday, and then moving to Thursdays, I will get 12 weekly infusions of Taxol (a chemo drug I had last time and tolerated very well). Doing it once a week means I can get a smaller dose and it's a lot easier to handle.  All the usual chemo side effects apply.  Hats and scarves will likely be in my future.

On week 1, 4, 7 and 10 I will also get two additional drugs, Herceptin and Perjeta. My cancer is HER2 positive which means that it tests positive for a protein called human epidermal growth factor receptor 2. HER2 promotes the growth of cancer cells and about 20% of breast cancers have this gene mutation that makes an excess of the HER2 protein.  While having lots of these HER2 proteins means cancer spreads fast, it also creates an Achilles heel that Herceptin and Perjeta can target.  These two drugs are monoclonal antibodies that target that specific protein and block its growth.  I had Herceptin last time and now we have this new drug called Perjeta to add in to the mix.  I wish I could share with you just how confident my doctors are about this treatment. I've talked to a lot of cancer doctors in my life, and I've certainly never heard them be so excited about something.

Once those first 12 weeks are up, I will continue to get the Herceptin and Perjeta every three weeks for another three months.  The side effects from these two drugs are much less than from the Taxol, and I had no issues when I was on Herceptin last time. I will also be getting a once a month injection of a drug called Xgiva which will help my bones to stay strong and will deal with the cancer in the bones more effectively.

Once those three months are done, we will assess the results through more scans with the goal being NED! Hopefully, I will be able to just go on a hormone therapy at that point and take a pill every day to keep it in check. I may never fully be rid of my monster, but we can turn it into a little tiny mouse that I just have to get after once in awhile.




Tuesday, January 5, 2016

Caught by the Monster

Well.

I'm pretty sure that starting a post with the word "well" is not considered to be stellar prose, but sometimes, words fail us.  Sometimes we discover that we are not nearly as strong as we think we are. Sometimes we are reminded that life isn't as fair as we want it to be. Sometimes, we can feel the monster that has been chasing us getting ever so close.  Sometimes, the monster catches us.

The monster caught me.

The Tuesday before Christmas the nagging cough that had been plaguing me for weeks escalated into difficulty breathing.  A trip to the ER confirmed that the asthma diagnosis I had been given just 10 days earlier was definitely not asthma.  A chest x-ray quickly revealed the truth.  I had enlarged nodes in my lungs and spots in both lungs of various sizes - spots that were consistent with metastatic breast cancer.  The monster was back, and it had colonized new territory.

A whirlwind of tests and scans followed including two CT scans which also showed lesions on my liver. Additional PET Scans and a liver biopsy confirmed what we had all fully come to expect. It's the very same cancer I started out with eight years ago. It just found some new terrain it liked, including a spot on my hip bone and a spot on one of my lumbar vertebrae, and my immune system just couldn't keep up. I'm pretty proud of my white blood cells for doing so well for so many years. But even the best defenses can get overwhelmed by the monster.  So, it's time to call in the big guns again. Chemotherapy.

Those of you who know me well are aware that this is the part where I attempt to find the positive side of things.  But, the thing is, I do have an awful lot of positives.  I have an amazing network of support - Lanny and Jasper, my Mom, and so many of you who have stepped up and said, "Just let us know what you need."  I have a totally supportive work environment. I am, in all other respects, very healthy. My breathing is strong again. I have good insurance. I have a yoga and meditation practice that keeps me clear headed and grateful for each day. And I have the advances of medical science in my corner with, what my fabulous oncologist calls, "some amazing new drugs."

I had a port installed today, and I have my first infusion on Friday.  I used to have a Caring Bridge site, but since I can't quite remember how to access it to make more posts, I've decided to resurrect my blog.  It feels like the right place to share the journey anyway, because, as awesome as Caring Bridge is, it's meant to be a place to share health information. And I am so much more than my cancer.  My cancer is simply a part of me. I have a lot more to talk about than cancer. Granted, it may dominate the conversion for awhile, and I won't pretend that I'm not concerned, and I still wish I didn't have to do this, but I don't plan to go anywhere anytime soon.

So, I guess sometimes we do find the words.  Sometimes we discover that we are a lot stronger than we thought.  Sometimes, we discover that life is unfair and messy, but also beautiful and generous.  Sometimes, we turn around and face the monster, and when we step out of the shadows into the full light of day, we discover that the monster loses its fangs and claws.  Sometimes we grab hold of the monster and decide to tame it. I think we can do it.