Words to Live By (Part 2)

In this second installment of the life lessons learned/what’s important to me at 50 I give you joy.  And many other things.

“There are random moments – tossing a salad, coming up the driveway to the house, ironing the seams flat on a quilt square, standing at the kitchen window and looking out at the delphiniums, hearing a burst of laughter from one of my children’s rooms – when I feel a wavelike rush of joy. This is my true religion: arbitrary moments of nearly painful happiness for a life I feel privileged to lead.” 
― Elizabeth BergThe Art of Mending

1935760_142466440801_985538_nJoy is such a hard thing to define.  Elation, delight, pleasure.  All those things, and something more, something intangible.  I live for moments of joy, mine and those of the people I love.  It’s where pure experience meets an overwhelming feeling of YES!  It’s the ultimate ah ha moment.  I’m always wishing the people I know, and actually even people I don’t know, could experience more joy.  There’s never enough.  Simple moments of overwhelming joy bring light and life.  Joy is the nexus of a meaningful human experience, of meaningful relationships with our fellow humans.  Joy radiates hope.  It’s electric.

“The world is full of magic things, patiently waiting for our senses to grow sharper.” 
― W.B. Yeats

Magic is everywhere.  In smiles and light and the taste of a fresh strawberry.  It lives in music and the wings of a butterfly.  It flies on the wind and crashes with the waves.  Everything around us is a miracle, full of magic.  Most especially our family and friends, but also in the breath of our pups, and the swaying of a daisy, and the glint of the sun in a rain drop.  There are amazing things all around.  We just have to see them.

“Maybe each human being lives in a unique world, a private world different from those inhabited and experienced by all other humans. . . If reality differs from person to person, can we speak of reality singular, or shouldn’t we really be talking about plural realities? And if there are plural realities, are some more true (more real) than others? What about the world of a schizophrenic? Maybe it’s as real as our world. Maybe we cannot say that we are in touch with reality and he is not, but should instead say, His reality is so different from ours that he can’t explain his to us, and we can’t explain ours to him. The problem, then, is that if subjective worlds are experienced too differently, there occurs a breakdown in communication … and there is the real illness.” 
― Philip K. Dick

Perception is key.  We have opinions and ideas and see things with eyes that were formed from our own experiences.  When circumstances happen to us or around us we look at those circumstances with those same eyes.  We tend not to look outside of our own box of opinions and ideas.  This means we only look at things from one angle.  Our own.  But looking and seeing are two different things.  Perhaps it’s just a matter of perception.  If we can somehow change how we view a situation that situation changes entirely.  I’ve done this myself and been surprised by it.  There’s always another way to look at something.  We move around a beautiful sculpture to get a view from all sides if we truly want to see it.  We need to learn to do that in our own minds.  It would open us up to others, it would create connections where they might not have existed before.  We have to look with our best eyes.

“Above all, don’t lie to yourself. The man who lies to himself and listens to his own lie comes to a point that he cannot distinguish the truth within him, or around him, and so loses all respect for himself and for others. And having no respect he ceases to love.” 
― Fyodor DostoyevskyThe Brothers Karamazov

Truth can sometimes be so hard, but it’s as necessary as breathing. The more honest and open we try to be with ourselves, with others, about who we are, about what we think and feel, the freer we are. Lies constrict our lives. When we tell the truth, we can leave that moment behind without another thought. When we lie, we live with it, carry it with us, forever. Telling the truth is much less burdensome. Telling the truth opens us up, makes us vulnerable, it puts us out into the world fully, as we are. It says, here I am, take me, or don’t. Risky, but with so much reward. We honor ourselves when we tell our truth. We bring integrity into our lives. We also bring trust, from ourselves, and from those we love. Telling the truth, truly, sets us free.

“Have you ever heard the wonderful silence just before the dawn? Or the quiet and calm just as a storm ends? Or perhaps you know the silence when you haven’t the answer to a question you’ve been asked, or the hush of a country road at night, or the expectant pause of a room full of people when someone is just about to speak, or, most beautiful of all, the moment after the door closes and you’re alone in the whole house? Each one is different, you know, and all very beautiful if you listen carefully.” 

― Norton JusterThe Phantom Tollbooth

Silence is golden.  I used to hear that a lot from my Mom.  One of those Mom sayings that stuck with me, and so true.  Quieting oneself, learning to enjoy and live in silence once in a while is wonderful.  It allows you to hear the world in a more profound way.  A few moments of silence can breathe life into a day filled with too much noise.  Listening to the quiet of the world around us helps us to find the quiet within ourselves.  Finding the quiet within ourselves helps us to center our minds, our souls, and our hearts.  Silence opens worlds to us we might otherwise miss.

“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.” 
― Shel Silverstein

Hope, remaining hopeful, is as necessary as breathing.  It’s easy to become overwhelmed with what is or has been or the worry about what could be.  We’re human, we struggle with this all the time.  But it’s so important to remember that anything can happen, and that anything can be good as much as it might be instead be frightening.  We focus too much on what’s not right, not enough on what is.  Hope is a big part of what’s right.    There’s always room for it, and it can be cultivated.  Trying to think positively, starting with one small thing that is right in your life, is good, can begin to grow a larger garden of positive ifs inside of you.   That’s where hope lives.  Hope leads to joy and laughter and an energy to get up and live life to the it’s fullest.

“Yes. We both have a bad feeling. Tonight we shall take our bad feelings and share them, and face them. We shall mourn. We shall drain the bitter dregs of mortality. Pain shared, my brother, is pain not doubled, but halved. No man is an island.” 
― Neil GaimanAnansi Boys

Sharing ourselves with others speaks to the essence of what life is about.  Expressing our feelings, our ideas, our hopes, our fears to another person, to other people, makes those hopes grander and those fears smaller.  Opening up our true self to someone else makes our world larger, grander, and fuller than we could imagine.  Letting someone know you, the real you, the whole you, is frightening and vulnerable, but also brave.  It’s an act of reaching out and of letting go.  It’s beautiful and fulfilling and it brings us closer, creates connections that last.

“It’s okay to be absurd, ridiculous, and downright irrational at times; silliness is sweet syrup that helps us swallow the bitter pills of life.” 
― Richelle E. Goodrich

Being silly, risking the ridiculous, is fun.  It’s enlivening, life affirming, corny, dorky, wonderful, and beautiful.  Not being afraid of being ridiculous and possibly absurd, while being out in the world, is a gift.  I say this because I’m a total dork, and can be totally ridiculous.  Singing in public places, dancing in the grocery store, putting on funny hats, doing a funny little walk because you’re trying to make yourself or someone else smile.  Those moments of totally letting go bring so much joy, so much fun to life.  And acting in a way that says we don’t care what other people think of us, only of what we feel like doing in the present, brings a strength and certainty in us down to our bones.  Silly can generate confidence, and confidence generates silliness.  It’s a beautiful relationship.

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” 
― Lao Tzu

Love is everything, having and giving it.  Not just the love for your partner in life, but love for friends and family.  I can’t stress enough how very important it is to let the people in your life know you love them.  The most important thing in life is who we love and who loves us.  It brings meaning to everything.  Nothing else really matters.  Love is everything.  Breathing joy and hope and compassion into everything it touches.

“Most people do not listen with the intent to understand; they listen with the intent to reply.” 
― Stephen R. CoveyThe 7 Habits of Highly Effective People: Powerful Lessons in Personal Change

Listening, and not talking, is central to having great relationships with people.  When you listen, actually listen without just trying to get your word in edgewise, you let people know what they have to say is important to you.  That they are important to you.  When you don’t really listen, when all you do is wait for the moment you can speak, you let them know that what you have to say is more important to you than actually hearing them.  Listening engenders trust, true companionship, and warmth.

Words to Live By (Part 1)

“The greatest wisdom is in simplicity. Love, respect, tolerance, sharing, gratitude, forgiveness. It’s not complex or elaborate. The real knowledge is free. It’s encoded in your DNA. All you need is within you. Great teachers have said that from the beginning. Find your heart, and you will find your way.” 
― Carlos Barrios, Mayan elder and Ajq’ij of the Eagle Clan


I’m 50 now.  The big 5-0.  It doesn’t freak me out, worry me, or make me feel like I’m old and getting older (though I am).  It has however made me reflect a bit on the life I’ve lived.  There are things I thought were important when I was younger, when I was more self-conscious and filled with angst.  Very dramatic.  I wrote a lot then.  Prose, poetry (some OK, mostly not), letters I never sent, some I did.  Now, at 50, I’m much more certain of myself, much more comfortable in my skin, not as self-conscious.  I’ve grown.  Most of us do.

Through the course of this time I’ve spent reflecting lately I’ve made a mental list of the things I think are important in life.  Obviously the people in our lives are the most important, but this list of things/ideals are what I believe make a life more fulfilled, the things that can actually make a life extraordinary.  I strive to put them into practice every day.  Sometimes I succeed, sometimes not.  But life is in the trying, and I try.

In honor of my turning the big 5-0 I’m going to throw the list out to the universe, as a gesture of good will and safe keeping.

I got a little carried away when I actually sat down to make the list (which is in no particular order by the way, just written as it came to me) so I’ve decided I will post it in parts.

Welcome to part 1….

“If we have no peace, it is because we have forgotten that we belong to each other.”
― Mother Teresa

Compassion is paramount to living a fulling life, without it we are acting alone in the world, separate from our fellow humans.  We cannot pretend to know another persons story, or how they came to feel and think as they do, but we can honor them as human beings and wish the best for them.  We can be open to the fact that they have had different experiences than our own, not expecting them to then act and think as we do.  Compassion fills our hearts with love instead of animosity, it elevates us.

“Be kind whenever possible. It is always possible.” ~ Dalai Lama

Kindness is the most important tenet, to me.  Above all things.  It’s so important to me that I have the above quote about kindness on every email I send out – you might have gotten one.  Kindness is always possible.  We have to be kind to others, and to ourselves.  I’ve learned a little kindness takes us everywhere we want to go.  It soothes souls, can make a persons day, and costs us nothing.  A smile, a kind word, a thank you, a simple acknowledgement of someone all work toward the common good, and good in ourselves.  It is beyond valuable, beyond priceless.  Kindness is key.

“Tears are words that need to be written.” ― Paulo Coelho

Sadness happens to everyone in life, let yourself be sad when you are, but don’t live there, wallowing in it.  It’s a tough balance, but necessary.  You honor the feelings by letting yourself feel them.  You don’t let it take control of your life by remembering that there is more to life than just the thing that’s created your feeling of sadness.

“You may not control all the events that happen to you, but you can decide not to be reduced by them.” 
― Maya AngelouLetter to My Daughter

Inhabiting yourself – feel your body, know your mind, feel your presence.  Things will happen to us in life.  Things we cannot control.  Things terrible and strange and lovely and warm and awful and on and on.  We get through it.  We get through it best when we know ourselves, when we feel our own presence and our own power.  That knowing helps us to understand that life will happen, but we can bear it, we can step through it. We can move beyond whatever it is that’s happened and into something new, something that could be wonderful in its own way.

“Beauty doesn’t have to be about anything. What’s a vase about? What’s a sunset or a flower about? What, for that matter, is Mozart’s Twenty-third Piano Concerto about?” 
― Douglas AdamsThe Salmon of Doubt

Beauty is everywhere, if you look for it.  Noticing the wind moving the trees, the sun glinting through a fence, the way the dogs have that little walk they have, a phrase, a painting, a blade of grass, my honey breaking into song, in light and love and kindness.  Beauty is everywhere.  We choose to see it, or not.  Life is so much better if you look for it.

“We cannot live only for ourselves. A thousand fibers connect us with our fellow men; and among those fibers, as sympathetic threads, our actions run as causes, and they come back to us as effects.” 
― Herman Melville

Connectedness  Connection is everything.  We are not islands unto ourselves.  Our actions effect those around us, just as the actions of others affects us.  It’s so important to remember that our ideas and ideals are ours and to dwell in the knowledge that other people, other creatures, have their own ideas, wants, needs.  What we do, every day; the words we use when speaking to others, the actions we take in kindness, to our fellows and to our planet, all ripple out.  One kindness generates another, one word of anger generates more anger, one positive thought spills out to create more positivity in the world, a negative thought spreads negativity.  Everything we do has a consequence for others in small, and sometimes not so small, ways.  Everything is connected.

“But I can hardly sit still. I keep fidgeting, crossing one leg and then the other. I feel like I could throw off sparks, or break a window–maybe rearrange all the furniture.” 
― Raymond CarverWhere I’m Calling From: New and Selected Stories

Anxiety.  I have it.  Everyone experiences it.  It’s not always rational, but it’s a natural part of living, of caring about people, caring about the world, caring about yourself.  There is no getting rid of it entirely.  The question is, does the anxiety control you, or do you remember to breathe, look it in the face, and try to keep stepping forward.  Sometimes I succeed in that.  Sometimes I don’t.  That’s OK too.  We can all wish for a little less anxiety in life, but we have to be careful the wishing doesn’t just lead to more anxiety.  Acceptance, stepping into and through it, instead of constantly denying and fighting against it, helps.  We have to remember to breathe.

“No one needed to say it, but the room overflowed with that sort of blessing. The combination of loss and abundance. The abundance that has no guilt. The loss that has no fix. The simple tiredness that is not weary. The hope not built on blindness.” 
― Aimee BenderWillful Creatures

Temperament and trying to keep oneself on an even keel is important.  The energy we give out to the world matters.  Not that we should live for others, we shouldn’t, but it’s important to be aware of our impact on others.  That we do have an impact.  It’s not easy when you’re in a bad mood, but it’s so important to try to be your better self, to try to remember not to inflict that mood on everyone around you.  Conversely it’s important to remember that if someone you meet in your day is in a bad space, they may have had a terrible day, or be battling demons you don’t know or understand.

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.” 
― Frank HerbertDune

Fear, or the lack of it, is one of those constants in life.  We are afraid of what is happening, or what could happen, or what did happen.  Fear eats at us and taunts us and reminds us that we have a lot in life we don’t want to lose.  Fear is.  I love the line in the quote above about letting it pass through.  That rings true to me.  We have to face the things we’re afraid of, as best we can, and then let that fear pass through us.  We have to let ourselves look at what we fear, look it in the eye.  Only then do we begin to take the reins back from it.  We can never live entirely without fear.  We love, we dream, we hope, and so, we fear.  It is a part of living.  A part of caring.  But we can try to keep it from taking control of us, we can try to be its master, instead of letting it be the master of us.

“The only time you look in your neighbor’s bowl is to make sure that they have enough. You don’t look in your neighbor’s bowl to see if you have as much as them.” 
― Louis C.K.

Empathy is central to living a full life.  Kindness, compassion, and love all come from a place of empathy.  We don’t have to know or have lived someone else’s circumstances to ache for them or to hope for them.  We tend to live in our own little worlds, sure of our ideas and opinions, secure in the thought that what we think, the way we think, is the right way.  Sometimes we even believe what we think is the only way.  We’re wrong.  We have no idea what another person’s experience is, where they came from, what they’ve seen, what they’ve lived through.  To have true empathy is to say that you might not understand someone, but you want to nourish their souls anyway.  It is to admit that you don’t know everything, and that you shouldn’t judge what you don’t understand.  To empathize is to step outside of your own set of rules and to say that you feel for another human, regardless of the presumptions you have about them.


cropped-10606338_10152718999440802_7621001213431286246_n.jpgStomps foot down and says in a huff, I was meant for more than this, I was meant for great things.

I didn’t really throw a tantrum, though it sort of felt like one in my head, mental foot stomping and all.  Sometimes our better selves appear to the world, but not always so much inside our own minds.

I’ve always had this idea, as many of us have I imagine, that I was meant for great things.  That I was meant to do something extraordinary, something beyond the usual, past the normal, over and above the every day.  I can’t really remember a time I didn’t feel this way.  And the feeling of it, the haunting thoughts that come with that feeling, are sometimes sort of depressing.  After all, I haven’t really achieved anything big.  Big in the I’ve written the great american novel and it became hugely successful kind of way.  So to have this feeling with me that I haven’t yet done “the thing”, whatever that might look like, can be a downer. You know, not having fulfilled my greater potential and all.

I’ve lived, to this point, an ordinary life.

And yet…

I say that, and then the next thought is… yeah, but… wait.  Think of this life I have, this life I’ve lived and am living.  Think of the wonder of it.


It occurred to me the other day, driving down the freeway toward Chicago with the radio blasting my current favorite playlist, that I’ve always had this feeling.  This feeling of not achieving.  I’ve had it, and never named it, never spoken it aloud, or even mentioned it quietly to myself.  Never the less, it’s always been there, taunting me, haunting me, and pressuring me since forever.  The next thought that day was that I’ll be turning 50 on my next birthday.  The big 5-0.  Surprisingly I realized I wasn’t dreading it.  In fact, I’m sort of excited to be entering the next decade of my life.  I think good things are ahead.

But, back to the deep thoughts I was having that day in the car.  All of this was passing through my mind, my strange expectation for extraordinary, my approaching milestone of a birthday, what my life has been and is, and then it hit me, the most simple of ideas.  The purest of truths.  My life is amazing.  My life is phenomenal.

When I looked on my life, the ins and outs of it, the ups and downs, I realized something wonderful.  I already have an extraordinary life.  My every day is impeccable.  My place in the world is secure, my mark on the world happening every day.  If I honestly look at myself I realize I’m a good person.  I treat people well, I’m there for people when they need me, I look at things with a bend toward the positive instead of the negative, I love nature and my fellow humans despite all of their flaws and sometimes because of them, and I truly believe we can all rise up to be our better selves if given the opportunity and sometimes a little help.  I’m a good sister, a good daughter, a good friend, and a pretty good partner.  I tend to think the best of people, want the most for people, care deeply about what happens to my fellow creatures great and small, I recycle, I dance in the kitchen, and I feel a deep sense of wonder and awe about the world around me.  I also realized in that moment that my life has been a wonder so far.  The people I’ve known and know, the places I’ve been lucky enough to see, the experiences I’ve had in small ways and big.  It was incredible.  An enlightening realization.  I have and am everything I need.  My life is already extraordinary.


Sometimes small moments, little thoughts, turn into huge discoveries.  One minute you’re just driving down the freeway listening to music on a sunny day and the next you are shifting how you feel about yourself and your world.

I’ve spent most of my life to this point thinking there was more, should be more, was supposed to be more.  That I was somehow not all I could be or should be or might be.  And that feeling, as I said before, haunted me.  It informed decisions, lent itself to indecision, and pushed me in all sorts of directions at once, while keeping me stuck where I was more often than not.  All of it inside, occasionally making me feel incomplete.

My realization, my revelation, is that I am all I was ever intended to be.  The rest, it’s unimportant. I know now that by being who I am, just me, I have changed people’s lives.  I had jobs where that was a literal thing, and yet somehow I always devalued it, until now.  I also know that I have had a decent impact on the people in my life, hopefully a good one.  Not just those I have known and still know, but on those I once knew, and don’t know anymore, and on those I will know.  I feel this certainty now as much as I felt the lack of it before.  I know this because I know how much the people in my life have had an effect on me.  I know this because it is.  And that is extraordinary.

My life has to this point been a series of wonder-filled moments.  Incredible moments.  I recognized some of them as they happened, more so when I looked back on them, but to now feel this sense of accomplishment for just being who I am, for just living the life I am, for just touching the lives of the people I have, it’s ground breaking to me.

This life, my life, is far from ordinary.  My life, every moment of it, has been and is extra-ordinary.  Light and love filled, even in it’s darkest moments.  To know this, to feel it now, to see it for what it actually has been and is…. it’s joyous.

Thankful Everyday – The Seventeenth

17.  I’m thankful for laughter.  The way my honey laughs with her whole body, how my brother slaps his knee when it’s a real good one, the grandsons giddy sounds, my friends smiling eyes when they laugh, strangers passing by who are cracking up, my family’s sounds of laughter at a family function, and my laugh when I’m crying because something is just so wonderful.  Laughter is the music of the soul.  It’s joy out loud.  I’m greedy for it, in myself and in others.  Nothing beats a good laugh.


Crying Tears of Joy, In the Garage

Ever find yourself sitting in the garage after you’ve pulled in, unwilling to get out of the car because the song that’s playing is making you feel something?

That was me just now, and damn, it is great to be alive.

Every once in awhile I find myself, because of a song, or a video, or a thought, or something my honey or the grandsons or the dogs do, just loving being alive. And not just loving it, but being so overwhelmingly grateful that I’m here, enjoying whatever it is that’s making me feel so much at the moment, I cry.

There’s a story behind this. Yeah, yeah, isn’t there always?

The story is a tad long, but it’s mine, and today I’ve decided to tell it. Here goes…

At the end of 2009, November it was, life was moving along just fine. Work, home, friends, family, dogs… a good life. Then, unexpectedly and out out of the blue, my honey got sick. Not just sick, but really sick. Sick as in we went to urgent care, they said oh, you have pneumonia, and here … have a shot in your bum, and go home. Only to be called by an emergency room doctor a couple of hours later who, after reviewing the blood work, told me to get her in immediately. He even told me all the other hospitals along my route in case she lost consciousness. Seems she was sicker than we were originally told. She went into the cardiac critical care unit. One of her lungs was completely full and the other was half full of stuff. This was effecting her heart as well, hence the cardiac critical care unit. She was delirious, literally. I didn’t know what she was saying half the time and she didn’t know much of what was going on. The nurses repeatedly told me she was the sickest person on that unit. She was there in critical condition for a week, before they were able to downgrade her and then finally send her home. I stayed with her at the hospital, never leaving. How could I? She’s my everything. It was the worst week of my life. Which, after you hear the rest of the story will mean even more than it does right now.

Fast forward to May 2010, six months after her illness, and I started not feeling that great. Looking back now I wasn’t feeling great for a little while, but by the end of May 2010 I really wasn’t feeling good. On June 1st we had yet another fateful trip to urgent care. Some blood work results, and they sent me directly from urgent care to the hospital, by ambulance. Seems I was so sick by then that if I’d gotten in a car accident on the way to the hospital from urgent care I would’ve bled to death. The EMTs took me directly to the oncology unit. A couple of transfusions, a bone marrow biopsy (my first of three) with the results a couple of days later, and what we feared had come true. I had leukemia. I was told that it was the deadliest form, but if I lived through the first month, it was also the kind that was curable. Scary, but… good? Yes. Good. If I lived, I thought, I might live.

I spent a month in the hospital… multiple transfusions, multiple tests, and my first round of major chemotherapy. I say first because though I got out of the hospital a month to the day that I went in, I had to go back in later in July for a second round. I was in for a week that time. Then again in August, for another round and another week. And then, in September, I got to do my last round, which was only two pushes (the last of which was on my birthday), outpatient. Unfortunately I ended up getting a neutropenic fever after that round and ended up in the hospital again, for another week, anyway.

By October I was done with the major chemo and starting on maintenance treatment. Which would last for two years and entailed me taking rounds of ATRA (the thing I started right in the beginning that really saved my life), low dose chemo in the form of pills, and a shot, every week. I had to go into the infusion center every week for that shot. It was my life, our lives, for two years.  My first, and diagnosing, oncologist, who was an amazing guy, told me that the maintenance treatment was akin to sweeping the floor. Done to make sure we got anything that could be lurking. I was all for it. My attitude, during the whole thing, was let’s go. Whatever we have to do, let’s do it.

In November, of that first year, I had the third of my bone marrow biopsies. They did a molecular scan and I was cancer free. No aberrant cells found at all. Yay!  I cried, my honey cried, my Mom cried.  I think I might have breathed deeply for the first time since the ordeal started.

Here I am, three and half years later, no longer on maintenance treatment, still getting blood work and seeing an oncologist every three months. Leukemia free. I will do this for another year or so before, once again, my protocol will change and I will only have to go once every six months, and then, at some point, maybe once a year. Who knows. I’m OK with whatever the schedule is.

I chronicled part of this journey here, on this blog. Not posting during that initial time in the hospital, except maybe right in the first few days, but posting here and there during the months that followed. I posted about things that happened, but I never really posted about how I felt.

Damn, I’m so glad to be alive.

I was, as maybe you can or can’t imagine, scared as hell. Scared doesn’t even cut it really. I was terrified. When you hear the words, “your body is chalk full of Acute Promyelocytic Leukemia” everything sort of freezes. Slow motion starts and you look at your honey and your Mom and your brother who are all there with you and they all start crying at once. You look back at the doctor and he’s looking at you, and you say something that seems like it comes from you, and from someone else all at the same time. You say, “OK, what do we do, let’s go”. I didn’t cry. I didn’t cry at all. Everyone else was crying, but I just felt this thing come alive in me. Will. An amazingly strong will. It was there, nuzzled right up against the terror. I would be so determined and yet I kept thinking about things like, oh god, if I die my honey will be alone, my Mom will lose a child (which is unthinkable), my brother will lose his sister, that my grandson won’t know me, that my honey won’t have any more adventures with me, that my dogs won’t understand if I don’t come home. I was so worried about everyone else. Interesting. I kept rehearsing the speech I would have with my Mom if it looked like I was going to take a bad turn. The speech where I tell her to be with my honey, to help her through losing me, to comfort each other. I wanted to live, I was fighting to live, but I also had to prepare myself mentally for the other thing that could happen.

I went through some awful things while I was sick. After the first round of chemo, while I was still in the hospital, I got so sick I don’t remember much, thank goodness. I had to be helped to the bathroom (by my honey or my mom), someone (my honey or my mom) had to shower me, I would throw up and have diarrhea at the same time which the nurses would have to clean up. During this time I also had to have a test (one of many), I don’t remember which one, and part of it was that I had to drink some stuff. I remember my honey, who spent only one night away from me during that entire time (working from the hospital, sleeping there, taking care of me) having to try and talk me into drinking it because I was getting so sick from it. I was sick anyway, and having to drink that stuff didn’t help. She convinced me and encouraged me to get enough of it down so I could take the test. She also had to talk me into taking my pills every day, and trying to eat, and taking a shower. She was my champion.

Everyone talks about the chemo, but no one talks about the other things… weird little side effects from basically having no immune system, like yeast that develops on parts of your body that you can’t get rid of, and other just as lovely things. I had a reaction to one of the transfusions and had to have a major dose of benadryl shot directly into me. I had neutropenic fevers followed by loads and loads of IV antibiotics (two at the same time), which didn’t help with the nausea. I had a pic line put in that was very difficult for them to get in and three weeks later an infection from that pic line which resulted in them having to take it out. I had ultrasounds because I had so much scar tissue in my veins in my arms after pushes and lines and blood draws and IVs that a couple of times they wanted to make sure I wasn’t clotting too much in there. I ended up at urgent once, during those first few months, because I got a hemorrhoid from all the laying and sitting, that started to bleed. Gross.  But, so it went.

I think the worst of it though, ultimately was, and is, the anxiety. I’m a person who never had anxiety before all of this. I’m pretty laid back. Pretty care free and pretty full of joy. Anxiety was something unknown and foreign to me. But during this I developed anxiety. So much so that leaving the house, after I had been allowed to go home, was scary for me. My body would just react… feeling like I couldn’t breathe, heart pounding, panic. When I was neutropenic, which was a lot during those first months as every time I’d have a round of chemo my numbers would crash, I had to be so careful. When I was in the hospital the precautions for neutropenia were major. Gloves, masks on everyone who came in, no flowers in the room, no fresh veggies or fruits on my food tray (and if there was, even a sprig of parsley placed there accidentally, they had to remove it quickly from my room and get me a whole new tray), restricted visitation, basically creating a germ free zone. It wasn’t just that I might get sicker, it was that I could die. My body couldn’t fight anything off when I was neutropenic. An infection became life threatening, as did a cold. So I got anxious about a lot of things. When I was permitted to go home my honey had to remove all house plants from the house (there’s a fungus that can be in the soil that could kill me if I inhaled it), we couldn’t have fresh fruits or veggies, no one could see me if they had even been around someone who might have been sick. I was weak and tired and nauseous most of the time. And just when I’d start feeling better, just when the numbers would start to rise, I’d have to have another round of chemo. My life became very boxed in and small. Hospital for treatment, then home where leaving the house (I’d have to wear a mask when I was outside the house) was not worth it or even possible sometimes. I couldn’t drive, couldn’t do anything really. My honey didn’t even sleep in our bed during this time. She slept on that same air mattress she’d used in the hospital, next to our bed, with the dogs, who couldn’t sleep with me either. It’s not just that things were dangerous to me, I was dangerous to them. I was leaking poison out of my pours most of the time. No kisses, from my honey or the dogs, no using the same toilet even, because I was toxic. All of this created anxiety in me. I still get it actually. Less and less all the time, but I do. I have pills for it. I got them a lot in the hospital, and used them a lot during those months of chemotherapy. They help. And thank goodness for them. Sometimes my mind would go and go, worrying, and worrying. A loop of worry and fear and anxiety and sometimes, panic. As I said, I’m better now, but I don’t know how many times my honey has had to look me in the eye and say to me, “it’s OK my love, you aren’t sick anymore, there’s no leukemia in you… none”. And the rational me then sort of wakes up, comes to again, and knows it’s true.

And damn, it’s amazing to be alive.

I guess I’m recounting all of this because I never have before, and it’s time. Time for me to say it aloud, as aloud as this is. But I guess it’s also because all of this is the counter point to what I was feeling just a bit ago sitting in our garage after having come home from running some errands. Nothing big happened while I was out. I just went to the library and then to the coffee roasting house and then drove home, sipping some coffee and listening to music really loud in the car. It’s sort of gray outside today and the leaves are falling. But as I drove into the garage, and shut off the car, staying in there to listen to the rest of the song (Change by Rascal Flatts, for anyone who’s wondering) I was overwhelmed. Overwhelmed because the leaves are falling, and the dogs were barking in the house knowing I was home, and I knew my honey was in her office working, and earlier today we’d gone swimming with our grandson, and the music was so beautiful. I started to cry.  Crying from a place of overwhelming happiness and a feeling that life is so big and wonderful, and so fully felt.

Damn, it’s so so good to be alive.

I am grateful and I’m humbled by the quality of my life.

The thing I learned from my honey’s illness, and then mine, was something I already kind of knew anyway, but it got reinforced big time. It’s something, a feeling, I wish everyone could feel and something I wish everyone could know, without having to go through something so major, so awful. It’s the surety of knowing that there’s nothing important in life save for the people we have in ours. That is, period the end, the only thing that matters. Stuff, problems, annoyances, possessions… none of it matters. Not really. The time we spend having adventures and experiences with the people we love and who love us, that’s what matters. That’s what you think of, what you fear you’ll miss, if you think you could die.

It’s so damn good to be alive because I have so many fantastic people in my life. People, and dogs that is. People I love to be with, who love to be with me. People who I miss when I don’t see them, who miss me right back. Dogs who love me unconditionally and bring me so much joy I can hardly stand it sometimes. People who I laugh with, and get angry at, and cry with, and am silly with. People I have adventures with. People. There is nothing more important than our relationships and the experiences we create together.  It’s the journey we’re making, with each other, that matters.   It’s what matters most to me.

I am so happy, so thankful, so grateful, and so overwhelmed to be alive. Life is so beautiful.


Giving Thanks

Wow…  Thanksgiving is tomorrow.  Can’t believe it.  Sometimes these things sneak up on us.  Not that we aren’t prepared, we are.  It’s just that I can’t believe it’s already that time of year.  We have entered the holiday season.  And again I’ll say… wow.

Now that I’m getting over my shock at the time of year it is, I want to give some thanks, as has become my tradition here at the think tank every year.  I am thankful for so many things….

First, as always, I’m thankful for my honey.  I just spent a couple of weeks away from her and let me tell you, I’m no good without her.  I mean this in a metaphorical sense people so don’t go making assumptions about my lack of self esteem… my self esteem is in tact.  It’s just that I don’t like being without her.  As I explained to my Mom and my brother, Karen is my home.  A house is a structure that, if done correctly, reflects who we are, feels cozy to that end, and shelters us from the elements.  A home, on the other hand, is where our heart lives.  Mine lives with Karen.  Hers with me.  We are simpatico in this.  Which makes it all the more real and heartfelt.  My home is with her, no matter where we live, and I am beyond thankful for that.  I’m blessed to have met her, lucky to have snagged her, and honored and humbled by the fact that she continues to love me, and love me more every day.  I can’t begin to express what this means to me, and really I don’t think there are words to describe it.  She is my breath, my light, my warmth, my love.  She is my split apart, and I am hers.  I whisper, thank you thank you thank you, out to the universe every day for her.

Mom and Kev… We are, and have been for a long long time, the three amigos.  Having spent time with you these least three weeks (one here and two there), I appreciate you even more, if that’s even possible.  There is a magic that happens when we are all in the same room.  I’m so lucky to be a part of that.  So lucky to have you… I feel love and gratitude for you every day.

Mary, Martin, and our little man… Thank you.  Thank you for allowing me into your lives, into your family.  As I’ve said before, I never had my own children, but nevertheless I consider you mine.  I feel a part of a family, with children, and grandchildren, that I would never have without you and your acceptance and love of me.  I love you guys and am so very grateful for you every day.

My family and friends… I tear up thinking about all of you, near and far.  For one person to be blessed with such an outstanding group of people in my life… I am so humbled.  You bring the zest, the encouragement, the support, the fun, and more love than I thought possible.  I’m amazed every day by the depth and quality of the people in my life.  Not only the sheer numbers of you, but by the people you are.  Each and every one of you is a stellar human.  I mean this.  Family to friends, each of you brings something so uniquely you to my life.  I treasure that.  I treasure how individual you are, how loving you are, how fun you are, how many smiles and laughs you’ve given me over the years, and I feel so fortunate to have all of that with you.  I am blessed beyond measure for knowing you, for having you in my life, and for continuing to get to spend time with you when I can.    No matter the distance it seems we always manage to pick up where we left off, be that a year ago or yesterday, and I am honored by that, by your presence in my life.  I feel you with me every day and I’m so very thankful for you.

The pups… I don’t know if I’ve said this before, but they are so important to me and every day I’m so loved by them, and grateful to them for their little selves in my life.  They are my home as well, and I am so lucky to have them.  They love without condition, without pretense, without judgement or agenda.  They’re always excited to see me, even if I’ve only been outside for a moment, and they are always completely genuine.  I love them more than I can measure, and am so very thankful for them.  They bring a joy to my life, our lives, that can’t be measured.

I always say the only thing in life that truly matters are the people we love and who love us.  I mean this.  Everything else is set dressing, though nature, in all it’s glory, is a wonder and something I’m also grateful for every day.   To that end I’d like to include the following poem by e.e. cummings.  He’s my favorite poet, and I’m humbled by and grateful for his words, words that have helped, at times, me to get through periods of struggle.  Words that have at times helped me to better explain the world to myself.  This is one of my favorites of his… and it pretty much sums up the rest of it, the rest of what I’m grateful for…

i thank You God for most this amazing

by e. e. cummings

i thank You God for most this amazing

day:for the leaping greenly spirits of trees
and a blue true dream of sky; and for everything
which is natural which is infinite which is yes

(i who have died am alive again today,
and this is the sun’s birthday; this is the birth
day of life and of love and wings: and of the gay
great happening illimitably earth)

how should tasting touching hearing seeing
breathing any–lifted from the no
of all nothing–human merely being
doubt unimaginable You?

(now the ears of my ears awake and
now the eyes of my eyes are opened)

Go Live a Normal Life

I’m crying.  I can’t seem to stop.  I dry up for awhile, and then there they are again, tears falling down my face uncontrollably.  I’m not sad… no, not at all.  These are tears of joy.  Tears from days, and weeks, sometimes hours, and two years and four months.

Wow.  What should I do now.  It hasn’t sunk in yet.  I think the sinking in will take some time.

I had blood work yesterday, it was great, then an appointment with my oncologist this morning.  The appointment was fast.  He looked at my blood work, said it was fantastic, listened to me breathe a bit, answered our questions, and then said to me go live a normal life. A normal life. Normal.  Life.

I’m overwhelmed.  Two years and four months, to the day, since diagnosis.  15 pushes of hard core chemo, three bone marrow biopsies, more blood work than I can count, pic line, pic line removal, tests on my heart, x-rays on my lungs, more pills of ATRA than I can count, trips to the urgent care, somewhere around 45 days in the hospital all together, 1065 pills of 6MP, 102 shots, and all the other thousand and one things that’ve gone on over the last two years and four months. Every week, for two years, every week… every Wednesday at 10:00 am.


Well now I guess I go live a normal life…  and here come the tears again.  They are welcome, and so is the joy the accompanies them. Live a normal life.  Normal.  Life.  That sounds really good to me.