ImageOh, how I have always loved food. Comforting, beautiful, whimsical, and delicious. Even being vegan opened up doors to flavors I hadn’t tasted before.  Needless to say I became increasingly upset when, beginning around November, my appetite began to wane. It started small; eating a couple things here and there but no big meals, and devolved into half of a smoothie and a handful of cherrios. A day. That was it. The other fun thing that happens when you take hardcore opiates, your whole systems shuts down. No bathroom. It was incredibly difficult to determine what might be a hunger pang and what might be gas, indigestion, or my stomach eating itself. I couldn’t move from my bed and every breath had a cough attached to it.  This cough would trigger a gag reflex that would then make me vomit.  Bile. It’s pretty scary to see bright yellow gunk coming from your mouth when you know you haven’t eaten anything that color, pretty much, ever.

As I continued to go to my doctor, I saw the numbers start to go down.  Once the weight hit about 140, I started to ask about my previous weigh-ins, just to get an idea.  When I originally started treatment, I was around the 150 mark. I gained up into the 170’s as my activity dwindled and I was put on different drugs. A few days would pass and I would go in for another doctor visit or blood draw. 135, 132, etc etc. Yesterday I hit 121. I hate scales and I’ve only ever had my weight taken at the doctor, and it’s because they make you. I don’t quite know why this one number has me freaked out so much this time though.  It’s not particularly “skinny” (ugh, trigger words) but I haven’t been near this size since, at least, 7th grade. That, along with the death/dying connotation, puts my head in so not so great places.

During my unfortunate “starvation period”, I began to feel outside of my body.  Yes, I definitely still felt the pain of a headache or a touch of a hand, but I had entered some other state.  One I’m sure I will feel again as time slips away. I would lie in bed and just stare at the green ceiling thinking it looked like a beautifully frosted cake. I would slightly turn my head to see some light through a curtain. But I wasn’t actually there. It’s not that I didn’t care, I just didn’t feel connected. I cried a lot, mostly to help myself feel better, and I became incredibly selfish. Well, selfish in a way that I felt it was time and everyone could just be done with me now. This is the closest I’ve come.

What “saved” me, besides the all-important med change (this balancing act will never quite be figured out)? My vegan/vegetarian friends will hate me, but it was chicken.  I struggle every single day with the ethics and morality behind what I’m eating, but chicken was the first and only food that I could eat that didn’t make me throw up or cause great tummy discomfort. I thank the chicken goddess for that! I’ve still managed to lose some weight (wtf?), but I am trying to make sure I’m getting some calories everyday. Maybe the next time I have to, inevitably, step back on to the scale, the number will go up.  I’ll be happy.

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The beauty in clarity

April 21, 2014

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Did I say the word hospice? Oops, forgot the explanation. I know it’s such a loaded word with so many negative connotations. This is where I happen to be, and it’s sad and scary.  See, I’m dying. We all are, of course. I seem, as some wonderful people have told me, to have a finer clarity on the matter which may be true only because I’m closer to it. How did I get to hospice? What does this mean for treatment? Etc.

In January I saw my oncologist, after a scan, and it appeared that nothing had changed (no new, no shrinkage of old). He referred me to the UA Cancer Center to determine if there were any clinical trials or other options. At this time, he gave me a prognosis of about a year. Went for other options, and thought about maybe doing a trial, but wasn’t sold on the idea. I had just come off of months of every week treatment, and felt just not good. The UA doc also gave me a year.

Needless to say, lots of thinking and deciding going on. In the meantime work was getting harder, and Social Security disability was giving me a hard time, so I opted to resign. Hard choice, as I loved the people I got to see everyday, but my work was seriously suffering. At this point I’ve decided to forgo any new treatments. It was difficult because I live to please and I wanted to do what would make family and friends happy, I didn’t want to seem like less of a “fighter” (which is such crap anyway!), didn’t want to “give up”. I had to be honest with myself and listen to my body; I couldn’t do it anymore. I was tired, sick of being hooked to bags, feeling like energy was being sucked out of my veins. I told my doc, and he suggested that it was time to look into hospice as a pre-emptive measure. I would have a team in place and they could get me meds whenever I needed them, and oxygen tanks, and support.

Yes, it is end-of-life care. I thought I had done work on becoming comfortable and at peace with my death, but nothing shakes you up more than seeing a sheet of paper, signed by a doctor, outlining time of death procedures. Or having to decide which friend to ask to sign my DNR. Or, even having those first tanks of oxygen wheeled into your house along with a giant machine (o2 concentrator) that sounds like a huffing and puffing robot.

It’s not even that, so much, that brings tears to my eyes at the most random moments. I woke up one morning and looked at my sweet pup, Mala, and the lump in my throat formed and thoughts poured into my mind like water in a pitcher. I won’t get to see her as an old pup, these eyes I’m looking into will be old and wise. Then I start thinking about all the eyes I have seen and how both pairs won’t get to share in that delight. Then I think of my husband’s eyes.

In a strange way though, as morbid as it sounds and as many tears as I cry, I feel so lucky. Again, it’s the clarity of it. The insight of it. The sometimes random stupidity of it. I mean, really, I have to clean my o2 tubes when my nose starts to run? Believe me, it makes me think about every tear I cry.

Even though hospice is scary and sad, it is so helpful for my quality of life, which is much more important than quantity. It gives me the opportunity to visit with dear friends I love, it helps me sleep, it takes some burden off of my husband, it helps me face questions head on. Looking and looking at more loving eyes than I could ever imagine, with their wisdom and their grace.

Why & How Does She Do It?

October 3, 2013

ImageThe honest answer? Hell if I know.  This ongoing healthcare debate, which I really don’t want to get into but what the hell, really has me questioning the access to care for those sick in our society.  Why do I get up and go to work almost every day?  Because I have to.  If I didn’t I wouldn’t have health insurance that covers the hundred of thousands of dollars already spent for my care.  I have to because, if I didn’t, there wouldn’t be the extra income.  Yes, I love my co-workers and everyone has been super flexible.  What about those that aren’t as lucky? I do it to exercise my brain even if it’s monotonous data entry.  Unfortunately, now, that is even becoming stressful.  Most days I just want to be home, in bed because I’m so completely drained from every chemical being put in my body.  The coughing is relentless, I get moodier and moodier.  I have to because it forces me to be in a good mood.

interruption….my husband puts me in the best moods all the time so no dissing on him.

The other thing I’ve been noticing a lot lately, is this playing down of one’s own trials and tribulations because they don’t seem important enough compared to mine.  I truly, truly appreciate every person who says I’m strong, brave, handling things with grace, etc. but please don’t feel that you have to diminish your own strength, bravery or grace.  I see it in you and others do too.  I know that all of the people in my life are wonderful, caring, beautiful people who each have their own obstacles to overcome and pain to deal with.  We can be in this together because, a lot of the time, I move forward so that I can see all of your lovely faces.  What better reason?

Threads

July 31, 2013

“Hold my hand and scream, ‘You’re all right’.”

“Tiny bubbles hang above me.
It’s a sign that someone loves me”

These threads that run throughout our lives are the most important pieces in the puzzle that is us.  How we connect to people who connect to other people who connect us to even more people.  This band of beautiful ribbons just spreading some kind of peace through the world. I recently received a mix CD from a very dear, wonderful friend that I’ve known for many, many years.  I can’t begin to describe the impact listening to these songs has had.  They were put together for me.  What happened to the mixtape?  We should all do this more often.  When we think of a song that pulls a piece of that thread and makes us feel connected to someone, shouldn’t we let them know?

It wasn’t just the act of getting the CD, it was the putting of the ear buds in, getting the lyrics, remembering high school, not wanting to remember high school, thinking about how we’ve all grown so far beyond what any of us imagined.  Even if that’s not even what we wanted.  How our lives would be different, but not better or worse.  How, from now on, whenever I hear a specific song, I will think of this person.  How special is that? 

As a brief update to all of my threads out there, I’m in treatment again.  It’s every week this time, and it’s been rough.  It’s just another fingers-crossed moment.  Lying down in child’s pose, in my wonderful little yoga shala, gives me such calm even with the flailing limbs and too fast heartbeat.  The whir of the little pump giving me my medicine even dissipates for a moment.

If I haven’t said it enough, to each and every one of my treasured threads, I love you.  Make a mixtape for someone, and revel in the music.  Dance, dance, dance!

p.s. for jim

Death, dying, wtf

June 24, 2013

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I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth,
tending, as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
~Mary Oliver

There has been a lot of examining going on in my life lately.  Not anything grand; mostly the feeling of my dog’s fur on my hand, the way my body gets warm and comfortable when Adam give me a hug, the gasp for air, the bedroom curtains with their hidden faces that are just really creatively placed creases.

This has really all come to the forefront since right in the middle of my lung radiation treatment when I began to cough.  I haven’t stopped since.  Is it the treatment, is it pneumonia, is it, is it, is it?  All I can say is it continues to be very humbling to not be able to bend over without losing my breath, or even walk farther than from the car into a store without having to pause to catch that breath you hope will still come.  See, it’s always been a real nightmare for me to think about dying by losing my breath/not being able to breathe.  Maybe that’s what I love so much about yoga; the focus on the big, beautiful, deep, full breath?  So, when I was on a little mini-retreat and was, literally, gasping for air, I got a bit scared.  This is what it’s like then, right?

I know that death and dying are not topics people generally like to talk about, and it’s not my favorite dinner party conversation either, but why is it that way?  Well, it’s pretty fucking scary.  You start noticing things that might not have even gotten so much as a passing glance before.  Yes, it’s true, all of those totally obnoxious cliches about “life being more important” etc come roaring to the forefront.  I don’t want to brag, but I feel like I had almost grasped that concept even before all of this occurred.  The importance of friends and family, doing things that might scare you and take you out of your comfort zone, watching the sunset.  Believe me, it took a long time and some pretty awesome brain meds to reach this, but I was there.  Not to say there aren’t still lessons to be learned but…

Oh, back to death and dying.  It’s possible, actually very probable, that this cancer will be the end of me. Now, this isn’t me giving up or not “fighting” (even though I truly hate that term…what does that make the people who didn’t live or “beat it”?), it’s just the reality of the situation.  The reality that everything is born and everything dies.  It’s a cycle and it’s breathtakingly sad.  It takes breath away that I can’t afford to lose.  It makes me want to gather everyone I’ve ever known and just look them with a smile.  Even the ones that have hated me (or that I’ve hated for whatever reason).  There are not enough days or planes or money or anything to get me to everyone and so I cry.  Then I remember that all of life is a crap-shoot and who knows what each second holds.  Don’t worry, I’m not going to jump into the whole “stop and smell the roses” spiel!

Am I glad that this happened to me as a way to “wake me up” to the reality and beauty of life that the great philosophers always pontificate upon?  Hell no.  Please, let me be ignorant and wander aimlessly in love with people and things thinking nothing bad will ever happen!

I had a bucket list that I posted here, and this “lung experience” has made me reevaluate it.  The only thing that needs to be on it now is 1) surround myself with love, even if that means staying in bed with Adam all day.  Holding on to the sound of our laughter or his snoring.  Who cares if I never learn to knit or teach a yoga class?  So, don’t worry about me, I’m going to be fine and awesome!  You can even talk to me about any of this too…it’s definitely a different perspective to have.  Those are seconds, minutes, hours that I would love to spend with you.

Frozen

March 6, 2013

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“We’re just spirits drifting through this perfect earth together
We can be free of our sad stories
They float away, until they’re like dreams from the night before
Shadows under the water
What’s left is pure life, life is the gift”

3 am, eyes pop open and there I am.  I immediately clench every muscle in my body, including my jaw.  My teeth grinding against each other.  I’ve somehow ended up in a fetal position in bed and can’t get myself to move or relax anything.  My mind is aware that this is happening and is constantly echoing “relax, relax, relax” from one part of my skull to the other.  For brief seconds I let the hold go and feel my limbs smooth out.  Sleep is probably not going to happen again, but I will try to squeeze my eyes shut hopeful that some little piece of magic nap dust will settle over me taking me into another dream.

I, honestly, don’t even really know what awakens me or how everything becomes tight.  It’s like a game of freeze tag with an imaginary friend.  Sometimes I think this is when I have my quote/unquote brilliant thoughts of my life.  Those thoughts and the “what will I have for lunch today?” thoughts.  All the important stuff.  They meander around trying to come to conclusions, decisions trying to be made.  I’m so frozen though that I can’t even entertain the idea of getting out of bed.  It’s not really anxiety, just a reflex.

I think it mostly comes down to the peace and the quiet of 3 am.  Pups scattered around the bedroom, claws making little scratching noises as they dream of chasing bunnies.  Husband breathing steadily next to me, a warm back against my cold forehead.  Most people probably feel their safest in their own bed.  It’s the place where we give up all inhibitions, close our eyes, and let go.  We talk to our pillows and tell it our secrets.  We allow insane, adventurous and sometimes brilliant dreams to trample all over our psyches.  Perhaps a nightmare.  I’m sure I clench everything in the middle of the night with my eyes closed, but there is just no awareness there.

Watching a show recently had me thinking about how we “never wake up as someone else” but how we have to really own our story and stick with it.  This tenseness, this wakefulness, this sometimes burdened mind, this grinding of the teeth, this cancer, it’s my story.  The next time it’s 3 am and my eyes pop open, I’ll think of you and maybe you’ll think of me and we will all be awake.

 

The shame of it all

January 16, 2013

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I have absolutely no willpower and, right now, it’s really my greatest shame.  I’m jealous of those around me that can stand against the pizza gods and say “No, thank you”.  I’m jealous of the women losing weight when I’m just eating my way through every package of cookies I can get my hands on.  I’m jealous of those people that are still going to yoga, people that don’t eat their feelings, people that look put together no matter what.  The gorgeous even after throwing up people.

Yep, that’s a lot of crappy jealousy that I’m holding onto.  And I’m embarrassed about it because I feel as if I’m doing a disservice to those who give me compliments or go out of their way to tell me I’m a nice person.  Well, okay, I guess I am.  But I’m also filled with jealousy.  It is probably the main thing that gets me angry when I think about the cancer and being sick.  I have always been a person seeking validation from others, but it’s become that much more acute; like I have to live up to a certain standard.  If I could just give up bread and sugar, buy a new dress, get my hair to grow right, everything would fall into its right place.  It’s bullshit.

I was recently visiting my very best friends in Boston, and I, not once, felt anything but unbelievable love for them.  The comfort I felt when I was with them just vibrated out of my heart.  Why is that so hard to transfer back into my soul when I’m home and with myself?  It’s becoming more apparent that I’m just incredibly disappointed in myself and how I’ve reacted to the post-cancer situation.  Yes, you only live once so have that slice of pizza! Yes, you only live once, so don’t go to yoga and take a nap instead.  Who have I become and how do I change that person back to the one that was up for anything before being sick?  Or at least the person who kinda, sorta, took care of herself?  Do I want to be that person again?  What aspects to keep and which to throw away?  I know it’s all about choices.  I also know that each of those choices are crystal clear to me, but I keep choosing incorrectly.  Why not continue taking the path with the potholes and depression?  It can be so much easier than putting any effort forward.

An extremely bright light in all of this is that I’m getting my very own little yoga room put together by my hubby and my dad.  I’m hoping this will be the catalyst to begin again.  I’ve become a bit soured on the studio experience, but again, these are my own perceptions and awkward feelings that are coursing through me.  It’s a continuum of bad feeling, good feeling, bad feeling, good feeling.  Just letting it come and go.  Maybe I can stay in the good feeling a bit longer and release that jealousy.

“I don’t remember were we wild and young, all that’s faded into memory. I feel like somebody I don’t know, are we really who we used to be.  Am I really who I was?” ~Ryan Adams

Light and Dark

October 19, 2012

“i was dead
i came alive
i was tears
i became laughter”

~Rumi

Sitting in front of the illuminated screen, tears streaming down my face, I tried to accept the passing.  It goes without saying that when someone with a passion for life and a true, loving smile for everyone passes away, the world suddenly feels empty.  The tasks then becomes embracing that positive and beautiful philosophy for your own life.  It is not an easy mantle to take up, but we do it anyway as a remembrance and as a gift.

Many of the feelings that have risen are certainly ones that I experienced when staring possible death in the face.  Having a doctor tell you that things don’t look good, hearing Stage IV, seeing scars on your belly and side will do that to a person.  The anger, the sadness, the hilarity of the situation, the confusion, all of it.  I have to say, though, I feel like I was ready for whatever would befall me.  I wasn’t, however, ready for it to happen to someone else. To say that this has shaken me would be an understatement.  You just want to lay on the floor and pound your fists and feet like a two year old screaming “it’s not fair”.  There is no fair, really.  It is the ebb and flow.

There is a sort of simplicity to death; one moment there, the other moment gone.  The breath that was so connected to movement, to thought, has stilled.  Along with that is the beauty of memory and the outpouring of love.  The light to go with the dark.  People coming together in shared grief and shared laughter.  The laughter, I believe, is more important.  Particularly when such joy was evident in everything that was touched.

As I move in and out of asana this week, there has been struggle, but also a lightness, a rightness, to each lift of the arms and rounding of the spine.  Even as I’ve felt a bit of a disconnect with certain aspects of the practice and the studio, remembering all of the good and important things that have taken place there only brings a smile to my face.  To be able to feel things so deeply with so many others is a blessing.  To breathe in the light and out the dark with an open-mouthed HA.

heart, heart, heart lovely Catharine.

Again

October 4, 2012

“Don’t stop now what you’re doin
What you’re goin my ugly one
Bring them all here
Hard to hid a hundred girls in your hair” ~Tori Amos

Somehow the first part of this post was erased, and I can’t quite remember what I wrote.  Just take it from here!  🙂

I do go in circles on this though because I have friends who benefit from juicing and/or calorie restriction.  It has made them feel better and given them energy.  I’m not saying that it hasn’t for me, but I don’t necessarily think my life has had a big dramatic change.  Also, alot of people in the juicing community (no one that I’ve actually come in contact with) believe that doing this plan can keep you from getting cancer.  Again, that’s just bullshit.  Sorry, it just is.

So, why.  Bluntly and honestly, I really thought I would lose some weight on the plan.  This along with my colon hydrotherapy sessions would finally relieve me of this burdensome belly and I would fit back into my size 6 pants.  It’s so ridiculous that I’m shaking my head while typing.  I know I’ve blogged, many times, about my body image issues, but now I’m feeling incredibly desperate.  This didn’t “work”.  What do I do now?  Of course, I’m the most impatient person in the world, so I’m expecting changes to be made immediately.  This is not a good combination.  What was it about leaving the ego behind again?

One thing I have been doing that is actually enriching and enlivening me is walking every morning.  Something so simple that I wasn’t sure I was going to be able to do much of again, has made me calmer and a little more aware.  I treat it like a walking meditation practice, although it is sometimes with a soundtrack of The Pixies or First Aid Kit.  I can breathe in the fresh air, appreciate the moon in the sky, see the sunrise.  Becoming happy with having that is a goal I’m desperately trying to reach.

I’m still skittish about the yoga room only because it makes me confront everything I dislike about myself and how far I am away from where I’ve been.  I’ve never been happier having my feet beneath me to steady myself in a pose, but I’ve also never been more frustrated when it all falls apart.  I think, ultimately, the frustration needs to be replaced with compassion.  It is hard though when I hear how good my practice is when I have so many other classes, from my past, to compare it to.  This isn’t to say that I’m not extremely grateful for the practice or the studio, just that I need to temper myself and not grasp so much.  My toes do enough of that in balancing poses.

I think it’s true of a lot of people, men and women, this feeling of achieving something and then realizing you’ve come right back to the beginning.  It always reminds me of the zen enso except we’re not reaching enlightenment but always returning to do it all over again.  And I’m not just speaking of reincarnation, but within the one body we have now.  How do we never quite learn the lesson we so need to learn?  How do we keep ourselves from being happy when we have, really, all we will ever need in community, love, respect?  It, once again, becomes the metta/loving-kindness practice of compassion.

 

“I want people to read what I write because it means something to them – either it makes them laugh, or it makes them remember things they’ve forgotten and that once meant something to them, or it simply touches them in some way.” ~Damien Echols, Life After Death

I was hesitant to write this post as it’s such a divergence for me based on my previous writing. It’s usually been about yoga, meditation and, most recently the cancer struggle and the possibility of death. I think, though, that must be what continues to make me, and so many others, feel some sort of connection to the writer Damien Echols. Well, the meditation/spirituality piece, facing death albeit in a much wider, scarier and present sense, and a bit of yoga thrown in for good measure. The words that someone chooses to write and send out in the ether can be so fragile yet so full of strength and power that they can’t help but remind the reader of their own fragility juxtaposed with their own strength. Even in the depths of despair. This is something I still practice with.

It brings me pause to describe the reason why I’ve been so interested in reading “Life After Death” as I don’t want to rehash the story that brought me to the book seeing as it has the potential to be the only thing the writer will be remembered for. Needless to say, I have been following the case of the West Memphis Three for practically a decade. Hearing the news of their release, right as I was in the throes of cancer treatment, brought such a sense of happiness and “fuck you, stupid justice system, you got yours!” sentiment that I can’t imagine, as someone completely removed from the actuality of what was transpiring, the feelings coursing through the 3 released men. Damien, on death row, most of all.

What strikes me in those deep recesses of my brain and heart, is the commitment to meditation Damien had while in a dark and oppressive cell. To be able to concentrate on the breath, on a mantra, on the back of one’s eyelids, in the midst of what could be considered impossibly tragic, for up to 7 hours a day, brings me to the verge of tears. It’s the epitome of my teacher’s saying that one should be able to meditate in the middle of a noisy street in India as well as on a comfy zafu in a peaceful ashram. Finding peace in all circumstances. Sitting with what is. It seems like such bullshit when you’re in suffering’s grasp, but reading Damien’s story and his words, suffering only brings about anger, judgment and unhappiness while concentrating on the breath, the mantra, the eyelids can bring calm within the storm.

The descriptions of sense memories; crunching of snow, the coming of autumn, a Conway Twitty song, are so eloquently stated throughout “Life After Death”, and is one thing that I always find brings about a deep feeling of camaraderie as I read. Someone else remembers boots on dirt, the moon behind clouds, a lyric or a poem that shoots you right back to your previous self? I thought I was the only one. Reading can really be so solitary that finding that hint of a feeling of the familiar can remind you just how universal the whole life experience can be. Let’s just say, Damien’s writing does this in spades.

I can, in no way, compare my cancer fight with being unjustly sentenced to death and spending 18 years on death row, and I won’t even try. All I can say is that the writing that poured out onto his pages made me re-evaluate my own connection to my practice and realize that my abandonment of it during the hardest time of my life was a grave mistake. Yes, I was doing the best I could through disjointed and disorienting treatment cycles and surgeries, but tapping into what I know has brought me calm in other times, became unimportant. In juggling with the unknown I regretfully decided not to continue my practice. Although, to let myself a bit off the hook, I did silently sing mantras to myself before going into surgery, in the hospital and when I couldn’t fall asleep at home. Om Namah Shivaya is good for that. As I continue to heal on the outside, there is still much healing to be done down to the marrow in my bones.

I digress. What does this all mean, why am I just barfing all over the page? I think this is what happens when a piece of writing takes you by the hand and leads you into every nook and cranny, and the writer’s energy can be felt with every page turn. Magick.

“I believe there are only two unstoppable forces in the universe. One is love, the other is intelligence.”

I was deeply honored to see Damien Echols in person at a book signing in Phoenix, and I became inwardly emotional just hearing that drawl and realizing that a voice could have very well been silenced. His hope of touching people with his words has come to fruition and I only hope the next journey is a happier and more peaceful one.