The Face of Leukemia 2014

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2014 Day 1……..

364 days to live.

364 days to wake up every morning, count our blessing and live. 364 days to write a new and exciting story! You see my dearies pontificating New Years resolutions involving the standard fare of weight loss, higher education, finding love, spending more time with our children, adding onto the house, finding a better job, saving more money, vacationing more, visiting family and friends and so on and so on is just not my style this year. But watching my wife live is.

364 days, until I can count 365 more days of life lived, 365 days written into the history books of our family. Cancer has this funny way of cheating you from a reality lived by so many others, changing the way your life story is told.  Cancer also has a way of sticking in your craw like an annoying persons laugh or an itch you just cant scratch.  It’s there, no one else can see it, no one else can feel it, only those who have it, or love someone burdened by it understand, yet the rest of the world just goes on with its business of worrying about resolutions for which a majority will sadly never achieve.

A new year a new fear.

We are winning this battle! Jacys superwoman body has done incredibly well! The last bone marrow draw showed no signs of Leukemia swimming in her blood, lurking in the darkness like an evil monster. Consolidation therapy starts on Monday and she will begrudgingly return to the hospital for 5 days of chemotherapy.  Her strength is back, she is feisty as ever, feeding horses in the morning and an occasional walk in the afternoon! (rumor has it she was spotted jogging on a levee, but its only a rumor) The next round of therapy will knock her down again and from what we understand recovery gets harder each time she finishes a session. She will come home weaker and a little sicker. Chemotherapy is not for the light-hearted, these patients (my wife included) are my heroes as I have witnessed the strain it places on the human body.  Yet Super Jacy has never deterred from her mission. Kicking cancers ass one cell at a time!

A fear still remains though. What if it (Leukemia) comes back? What if her white blood cell count doesnt recover? What if she catches a common cold during these periods, (something that could kill her) what if?????? These are fears we will live with for the rest of our lives.  Every cough that arises, every sniffly nose, every fever, everytime she feels run down, for the rest of her life she will need to go have blood drawn and see the doctor. 3 more times to go, 3 more week-long sessions, three more weeks of hell.  In the end, a small price to pay to live. Jacy promised me she loved me enough to beat this, she is keeping her word.

Day 1…. Today began our 2014 journey and Jacy spent it the only way she knew how.

It was a day filled with visiting friends, making her children laugh, planning a birthday party for her son and wondering whether or not to shave the small patches of hair fighting against the laws of chemistry. Little strands hanging on for dear life, trying their very best to make my wife look like a chia pet. Biggest decision of the day? Shave the head or let those little hairs grow only to meet an untimely death in 4 days.

With the beginning of a new year I wonder about the thousands of other spouses, significant others, and children all living and loving someone close to them with Leukemia. I worry about the ones who struggle to support their loved ones without the means of expression such as writing brings to me.  Do they lay in bed at night afraid of the darkness, wondering how long, why them, all while scooting a little closer to the one they love just to feel their body heat. Are they ok, do they know its ok to feel the way they feel, can they find peace? I am sure they do and I am just rambling, but its in my nature to worry about everyone and everything.

So welcome 2014! I welcome you with open arms (and Betty’s arms are plenty big enough) for the hug of a lifetime! 2014 we hope you are filled with many misadventures, happiness and love! But most of all 2014, we pray you don’t leave us reeling like your bastard predecessor 2013 did! But if you do, not to worry, the story you tell will be interesting none the less…

364 days… The story begins right now…

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The Face of Leukemia (December 18, 2013)

 

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SSSHHHHHHHH

Do you hear that? It’s the sound of silence. Normally right now I’d be cozied up in my captain’s chair, shorts on, comfy t-shirt, freshly showered with a hot cup of tea off to my right. Then carefully place my iPhone ear buds into place and with the stroke of a finger, “classical to study by” gently lulling my senses, firing a few neurons, stimulating a thought process into action.

But not tonight.

Tonight there is not a sound echoing through the corridors of our home. Four children off to sleep, two dogs snuggled up to a few human blankets while one stands guard at the front door and the other ones at my feet. I’m still in my shorts, we are out of tea and the silence is just to grand to ruin with any music of any kind. Yep pretty nice..

All Neurons firing properly.

A moment of pure heaven like this seems the perfect time for a bit of reflection covering the last 29 days.

  • Iran agreed to limit their nuclear development program
  • Chinese Spacecraft Change 3 safely landed on the moon
  • Paul Walker, Ray Price, Peter O’Toole, Eleanor Parker and Jim Hall all passed away.
  • Nelson Mandela as well walked towards the light.
  • Hanukkah has begun and Winter solstice is upon us.
  • School shooting in Colorado
  • Hospital shooting in Nevada
  • Oh yeah and that whole my wife was diagnosed with Leukemia starting a scary fight for her life.

Oh hey that last thing! Yeah funny thing about that last one there, because of that little bullet point I knew none of those things above it happened. Can you believe that? It appears as though my full focus was on one thing and one thing only. Apparently there was neither time nor wanten for me to flip on a television and search out these wonderous revelations.  Seems as though reading, learning and living a life of leukemia can really skew a fellas sense of priority.

Case in point; just prior to cuing up the old blogger keyboard this evening my finger (on its own of course as I would never) clicked upon the Yahoo banner and up popped all these top headlines Yahoo believes I should know about. Amazingly enough not one of them held an accurate title as most were standard stretched truth “catchlines” instead. It also seems as though most stories revolve around “celebrities” as if our lives would wilt into the unknown without our latest gossip over Kim K or what the Jackson’s are suing over in regards to their dead iconic son.  What wonderful philanthropy has lofted Brad Pitt to sainthood and why the hell is Angelina Jolie 98 pounds? So it seems as if by worrying about the effects of Leukemia upon my wife and our family, worrying about the hundreds of thousand United States citizens suffering from Leukemia and other forms of cancer every second of every minute of every day. My thought process is severely flawed. According to polls and data it appears the American people don’t care, but what they do care about is the Real Housewives of some dumbass city? Or perhaps how millionaires actually need assistance finding a date! Really? You are worth millions and you need to waste your money using Ms. Smartypants to find someone for you? COME ON! Not buying it! Then of course there is Kanye laying it all on the line, like a police officer or soldier, risking his very life to entertain us poor lowly citizens.  Yep over the last 29 days I got it wrong…

I always knew being so wrong would feel so right!

So here I sit very content with these current choices as my wife sleeps soundly. Gone are the night sweats for now. No more needing to have me fetch a pain reliever at all hours of the night. Gone is that horrible aching pain associated with a feeling of her bones exploding while creating new life within her blood stream.  Gone is the never ending headache. Gone is also her hair, all of it, everywhere, seriously, ok except her eyebrows which so far is pretty cool. But man can you imagine waking up one day to find all your hair is just gone? Can you?  But anyways you know what isn’t gone? Her beautiful smile.

Jacy’s smile as I have written in the past is one in a million. Leukemia has not taken her smile from her face. She wears it proudly each and everyday. Leukemia is keeping some of her energy, which is to be expected, but even that is a battle she is slowly starting to win!

We met with Dr. Truong today and we still have a long road to go with 3 more consolidation therapies planned. (One week a month, for three months in the hospital for chemotherapy) We are also being referred to Stanford for a possible bone marrow transplant. Once at Stanford more data will be in and all our options will be revealed.  But in the end, we are way ahead of schedule, her white cell counts are through the roof and the last marrow draw showed no immediate signs of Leukemia! We are beating this monster handily! Wait for it, wait for it, YES everyone that means we ARE Kicking Cancers Ass One Cell At A Time! Ok not really we but she…

So in the end I think I will keep the television off.  In the end it appears that maybe just maybe whats going on around me, in my personal life might be a bit more important than whether or not Mylie Cyrus’s life IS a wrecking ball.

And at the end of the day, I think I’ll just sit here, relaxed, enjoying these tiny moments knowing the woman I love is sleeping peacefully and because of her will and tenacity I get to enjoy her for yet another day..

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The Faces of Leukemia (December 14, 2013)

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My face….

Its midnight and I can’t sleep. Facebook says: write something…. But I can’t, not for lack of inspiration but because my writings are more than Facebook can handle, the emotion, my feelings, inner torment. These feelings take more than a few lines to describe, more than a paragraph to sum up into a neat tidy little package. These yearnings, longings, fears, unknowns, hover over my head. They are kept at bay most of the time, squashed into remission by a steel will and optimism. Yeah optimism. The problem with optimism for myself is I am a natural pessimist. The person who says no first than after careful consideration reconsiders my response. Some would call it a natural negativity, I call it lessons learned through life experiences.

Why cant I sleep, what is tugging at my brain causing fear to paralyze me in bed with the light on? Waiting, no, praying the monster under the bed doesn’t come out to play?

It is the darkness.

With darkness comes silence, with silence comes thought, with thought comes sadness and with sadness comes fear. Fear for control I do not have, fear for an outcome which I know not an answer. Fear one morning I will awaken from this dream or nightmare and find myself alone. Now being alone is not so bad, that is when you have someone to come Unknownhome too. Being alone brings peace, it allows you an ability to discover and rejuvenate your self-awareness. That is unless you are already comfortable in that department. Being alone should be by choice not by design. Being alone should never be forced upon you unwillingly, in a cowardly act or unforseen circumstance. In the end it doesn’t matter what it is,or how it happens, I am scared of being alone.. I am scared of losing my friend, my wife, to that bastard known as cancer.

I roll over in the night and she is there, even sleeping she lazily smiles at me with the brightness of a thousand suns. She holds me in a way that even I can’t explain. I sleep well because her rhythmic breaths sooth me so. A touch of the hand, a brush of the leg, a heavy sigh, they all lend to the comfort that can be sleep.  And yet now no matter how positive things are looking in regards to her health, no matter what is happening in our lives there will always be an unknown. The unknown is Leukemia and it will remain hovering over us for the rest of our lives.

How many days do we have? Is it a year, three, five, ten or twenty? What is the outcome Unknown-3and why can’t we know. Doesnt the cosmic powers that be, the holy heavens above know we have children? Doesnt anyone understand the importance of this woman seeing her children grow up, get married, have children of their own? Doesnt my selfish rant have some bearing on our future? Although ultimately, knowing might not make things any easier, bitching about it now in a rudimentary way is cleansing.

Darkness creeps slowly, with it sounds of others sleeping makes me inevitably jealous. Closing my eyes, squeezing them tight,  praying sleep will come quickly for exhaustion consumes my very being. Reaching out slowly, nervously grasping a small bead like switch, turning off the light, which instantly turns on a fear. With this fear comes loneliness, with loneliness comes a absurdity in regards to wasted time worrying about an emotion that shouldnt be there since she lays right beside me, healthy (as healthy as one can be) and alive.

I hate you darkness! My heart beats faster, my respiratory rate rises and it becomes easier each time to hate you more! You envelop me, smothering me like a blanket, restraining me as a straitjacket would.. Your coldness leaves me sweating, wallowing in ice water and before I know it I just can’t swim anymore. Darkness you take pleasure in ruining my life, keeping me from the sanity so many others enjoy by midnight. You are to busy feeding my thoughts and dreams waiting for the cloak and dagger game you play to emerge from the shadows. I hate you darkness, I god damn hate you..

So many are wondering what its like, how your life changes upon learning someone you love has Leukemia or cancer. The questions are normal and I love being able to answer them. I am very thankful it is me who gets to support this woman. I am thankful God found a job for me that falls within my realm of understanding. I am thankful that I can hold this woman up, and help her walk through the next 6 months of chemotherapy surrounded by nothing more than our will and love. Most people wonder if there is something more, if there is something better they should be doing with their lives. Not me, God gave me my job, its right in front of me and she loves me to the moon and back. I don’t want to disappoint her, I don’t want to lose her, I don’t want to be alone.. Selfish as it seems…

Fuck you darkness, I hate you, I hate you all to hell….

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(Please understand this is just a rant. I am fine, we will prevail, we will kick cancers ass! I am not looking for sympathy or pity, but helping those understand some of the irrational thoughts happening when you are alone, in the middle of the night, trapped with  nothing more than the unknown and a crazy brain that refuses to quit thinking. It is after all why I write…) 

 

The Faces of Leukemia (December 12, 2013)

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Sun shines upon my face, the warmth of its gentle touch brings peace to a troubled soul. I can stand outside, I can walk freely, I can run in the sun like a 6-year-old child filled with glee.  I, I, I, I, I……..I can.

Today came the slap in the face we have been waiting for, a realization that she cannot. Yes I knew this, yes I tried my best to shield her from this simple fact. But today not through talk but action, she realized finally and fully that she cannot.

Tears flowed like rain….

A healthy vibrant (although exhausted) mid thirties woman no more than 22 days ago has been reduced to a small stepping, feet shuffling, woman trapped within the confines of her own home.  She puts up a wonderful theatrical front for all to see. But once the curtains have closed the orchestra’s plucked its final chord, the seats silenced through desertion. She no longer needs be onstage, whats left of her energy and spirit emerges. For now, a bit broken, for now a bit low, for now a heavy weight upon her heart. For now sadness as a simple act of vacuuming the floor leaves her spirit crushed, her emotions raw.

When she feels as though she “can’t”, she looks into the mirror for strength, what she sees is not what you would expect. It is not the woman who 22 days ago had a full head of hair, its is not the 14 pounds lost from her full perfectly formed body, it is not sadness in her desperate eyes. Desperate only for answers as to why?

It is who she perceives to be the real “faces” of Leukemia.

(These are but a very small portion of family and friends we love and cherish all of you)

These faces that she loves so, who have taken up or absorbed her every waking morning since the moment they first met. The faces of her friends and extended family, the faces of those who uplift her in spirit and love.  The faces of Leukemia are far and wide, reaching as a pebbles ripple in a calm lake. Starting out with a small splash, tight and circular expanding, eventually touching every open space upon the water, becoming still upon reaching an open shore.

The faces of leukemia are all those touched by this disease. It starts with the victim, and I say victim because by definition that’s what you are, a victim. Every person within the victims sphere is touched, then every person who is friends or family with those people are touched and the ripple spreads.

One person affected by this disease turns into hundreds if not thousands of people effected. All reaching, all wondering why? Just as Jacy wonders why?

Just as I quietly wonder why?

So how many people can become the true faces of Leukemia? How large would a collage of faces become? What can we do help those people as they themselves process what is happening to those they know and care about?

We gain knowledge and we fight! Not for a week, not for a month, but for a year, and a year after that and we continue to fight! Because Jacy is not the only face, because there are hundreds of thousands of victims out there, hurting as she is hurting, wondering as all of you are wondering and sharing the very same pain and experiences. We fight!

Writing is how I fight. Helping with a Bone Marrow drive that not only will help my wife at some point but maybe find a match for someone else is how I fight. The faces of Leukemia range from a year old to the elderly, they are victims and as I have explained so are their families, friends and loved ones.  For them as well as my wife we must fight.

It is not enough to just walk through this world oblivious, thinking this will never happen to me. Because I guarantee if you know someone with cancer, if you have heard of cancer if you have felt the sting cancer leaves upon you then Yes it can happen to you.

So today and everyday we must keep the faces of leukemia in our minds, the faces of all cancer patients in our hearts and we must fight…. Suffering a loss is not an option, celebrating a victory no matter how small is….

We must keep kicking cancer ass, one cell at a time..

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The Face of Leukemia (December 7, 2013)

 

IMG_2037Hair:

We trim it, grow it, wax it, shave it, style it, comb it, do crazy things with these human DNA carrying follicles for attention. Hair, its funny we don’t really think all too much about hair as it’s an assumed portion of our anatomy. From the day we are born all of us walk through life with hair of some kind layering our bodies; some more than others and some less than others by choice, but hair none the less. imagesCAQUXXXU

But there is an elite crowd of human beings walking this earth. They belong to a very special club. A club that no one wants to join, no one person is standing at the clubhouse door banging fervently to get inside. No one..  Yet rumor has it close to one million people are card-carrying members of this fraternity.  One million people have come as close to death as you can get then climbed their way back inheriting a lifetime membership along the way. One million people. Think about that for a second….

So what do these one million plus club members have to do with hair?

They don’t have any! That is right, not one single follicle, not a stray, a sprig, a whisker or unkept eyebrow. It hasn’t been shaven down to the epidermis or plucked by a crazy tweezers wielding lunatic. Every single hair, all 140,000 strands of color enhanced, vanity driven strands are gone.

This of course is the norm when you are enrolled in the chemotherapy club, everyone’s worst nightmare right?  Its funny really when you think about it, we as a society put so much emphasis on our hair.

Turning grey or tired of your look- Color it, trim it, shape it.

Falling out- Rogaine

Thinning- Hairclub for men/transplants/comb over

Trends- Shave it, mohawk it, pixie cut, curls, bun, dreadlocks, cornrows, bob, etc..

And yet when it has all fallen out, what emphasis is there? To wear a hat or a scarf? As a chemotherapy club member you never have to worry about haircuts, dyes, styles etc.. All you need to worry about is whether or not your noggin stays warm.  There are thousands of hats, scarfs, and bandanas to choose from, or hey just step out like Mr. Clean and rock that shit!

Imagine waking up one morning and finding all of your hair-and I mean ALL OF YOUR HAIR gone. You are lying in a bed of your own hair. Pubic hair, pit hair, leg hair and arm hair and of course the hair from your head. What would you do? How would you feel? Would you smile taking the high road and consider it just another chapter in your already interesting life? Or would you curl up into a ball, terrified to walk amongst the hair gifted for fear of being spotted, ridiculed by the insensitive or pitied by the ill-informed. I am not making a judgement for one way or the other, but if I had my choice I am pretty sure a bitchen tattoo would make its way onto my dome, helping me to celebrate the obvious. I am still alive and kicking cancers ass! Now in no way am I advocating for my wife to get a tattoo on her head. It was purely a rhetorical question.

Why am I traveling down this little pathway? Because that is exactly what happened today. Jacy started officially losing her hair. Its coming out a thin handful at a time, and when she sits up in bed her hair looks like a dog when it sheds. Strands poking out of everywhere with strands littering her pillow. Staring at this and fighting an overwhelming urge to pull them out myself (it’s the ape in me) I found myself pondering those very questions. Thinking about all the times I cracked ignorant jokes about looking as a chemo patient to friends. How would I feel? How would you feel if this was happening to you?

Now luckily enough a sense of humor is what all of our friends and family have and my wife is no different. We have joked heartily about her losing hair and tomorrow I am going to shave it all off to save her from choking to death in the middle of the night on an unruly chia pet looking clump! But just the same it has changed my sensitivity level or judging from that last crack maybe it hasn’t? I digress…

Do you really want to know how much you love someone? Do you really want to understand if you or your partner are shallow and vain? Shave each others heads and see if one of three things happen.

  1. You both laugh until snot blows from your nostrils then fall into each others arms with smiles upon your faces.
  2. You realize in that moment you partner is hands down the most beautiful person you have ever known.
  3. You stare at each other uncomfortably acknowledging you are so shallow that you cannot see the beauty within. Only the trappings of what is on the outside.

Lucky for me as I stated previously this has changed my sensitivity towards others, and as far as my wife is concerned, well I have always seen the inner beauty of this woman. When I look into her eyes and kiss her lips there is nothing else. Bald or full of hair, when she smiles at me the world is a better place.  I don’t think she really knows the power her smile and personality carry in this world but I am pretty sure she is about to find out.

Anyways, Jacy already knows how to rock the bandana! That my friends is just freaking awesome!

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Kicking Cancers Ass once cell at a time!

 

 

The Face of Leukemia (December 6, 2013)

THE HILLS ARE ALIVE WITH THE SOUND OF MUSIC!!!

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The joy, laughter and excitement of a young woman twirling, running and singing!

Yes that is the way I feel right at this very moment, for you see the woman I love has been given a bit of a reprieve! There are many unknowns in life but today we worked only on the “knowns” and the news was good, no great! News that our family needed to hear, and it was glorious!

So like a young woman in love, running across the Austrian hillsides, Betty is giddy with excitement! For you see this woman, this friend, partner and wife was told today by her doctor that she will live! She will live! SHE WILL LIVE!!!!!Unknown-4

Ok all funny drama aside, truth be told we went from a 5 year window two days ago to a 10 year window of survivability today! That ladies and gentlemen is huge! This specific strain of AML Jacy is carrying is the MOST treatable of all its ugly little counterparts.  No other abnormalities within those strains were detected either wich makes her chances for a longer happier life much more realistic. Tears of joy as my wife can now rest easy with the knowledge that barring any unforseen infections, relapses or just plain old crappy circumstances this woman, this mother of four will see all of her children grow up! For me personally that is exciting news to say the least. No one has spoken of remission yet but as strong as my wife is that is not out of the realm as far as I am concerned.

But through all the happiness, the baby steps towards recovery, the hard-fought singular battles.  There lies an undercurrent, a feeling for myself of  helplessness as I watch her slowly wither away (yes she is losing weight) unable to walk around the floor we are currently on without exhaustion. Suffering through boughts of diarrhea and nausea. She currently can’t eat because of sores in her mouth, a side effect of the chemotherapy. She doesn’t deserve to suffer like this, no one does, but especially my wife.  I want to carry this burden for her more than anything. Ease the struggle, take away the pain, remove worry and doubt. I want to do that for her, I need to do that for her and yet, there is no way for that to happen.

Her hair is finally starting to fall out and no matter how much I joke about it, or promise her she will remain the most amazingly beautiful woman I know, she is worried. Not for herself but for me, for her children. You see what she fears is it will scare the kids and I wont find her as attractive anymore. What she doesn’t understand, what I seem to have failed in all my attempts at communication throughout our marriage is; I see her from the inside out, I have always seen this amazing woman from the inside first. Now don’t get me wrong, my wife is incredibly beautiful on the outside as well!  But what makes her attractive, what makes those eyes shine so bright or her smile gleam under a mid day sun? It’s the radiance of her soul shining through.

So how do I convey to her that hair or no hair, skinny or fat, in shape or not, there is nothing that will ever change when I look deep into her eyes. The feeling I get while holding her hand, or the nervesnous still encasing me when she leans for a kiss? She needs to know, and I mean know that we will walk this path together, side by side and I will carry as much of the burden as humanly possible.  Fighting cancer is a WE thing, not a ME thing. No one fights alone, no one! And when that someone is the one you love, that trust, that honesty shared between you both from the moment you said “I do” throughout the years evolving and growing until this very moment, is exactly what the two of you use to lean on each other and make it through!

Thanks for letting me get that off my chest, that was little bi-polar moment huh? Happy then somber, well then lets get back to happy shall we? 

Now where was I? Oh yes, THE HILLS ARE ALIVE WITH THE SO- Oh to hell with it! We are KICKING CANCERS ASS!! YEAH!!!

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The Face of Leukemia (Saturday Nov 30 2013)

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Chemotherapy (often abbreviated to chemo) is the treatment of cancer with one or more cytotoxic anti-neoplastic drugs (“chemotherapeutic agents”) as part of a standardized regimen. Chemotherapy may be given with a curative intent or it may aim to prolong life or to palliate symptoms. It is often used in conjunction with other cancer treatments, such as radiation therapy or surgery. Certain chemotherapeutic agents also have a role in the treatment of other conditions, including ankylosing spondylitis, multiple sclerosis, Crohn’s disease, psoriasis, psoriatic arthritis, systemic lupus erythematosus, rheumatoid arthritis, and scleroderma.

A lot of really fancy words that add up to a great weekend at your local hospital huh? Over the last few days I’ve had numerous people ask me several question about chemotherapy and its effect. More specifically its effects on Jacy.

Heres what I have learned in the past 240 hours.

Chemotherapy is extremely hard on your system as it not only kills the “bad” cell or cells targeted for annihilation, but it also kills all the “good” cells in your system.  Hence the reason for a prolonged hospital stay.

While in the hospital you will experience several really interesting phenomenons.

  1. Night sweats-not just your average sweat either. Picture running the Boston marathon. On a 100 degree day. With 100% humidity. While wearing a garbage bag. Over your wool suit. You getting the picture yet? It is not uncommon to fall asleep and wake up in a virtual pool of sweat.
  2. Hot flashes- these aint no menopause, room is spinning type hot flashes either! These suckers come on like a mid summer Texas heat wave! 1450743_10202598276704690_1911443489_nThere isn’t enough water in Lake Tahoe to cool these bad boys down.
  3. Shivering- Whilst you are sweltering amidst your hot flashes, praying for something, anything to cool yourself down. Dont fret because not long after your hot flashes arrive the arctic bound shivers and shakes take over. Yep cold as ice, goosebumps so big there should be a hunting season and never ever enough blankets to bring you back to room temperature.
  4. Diarrhea- That’s right boys and girls no treatment for any life altering cancer would be complete without this little gem. Not your average diarrhea either. It glows! Hee hee, that’s right, it’s a bright yellow/greenish almost snap-light looking glow. It’s that special poo that makes a spectacle of itself.
  5. Mass urination need to go pee? Do it! Then in 10 minutes get up and do it again! Remember you have 1000’s of cc’s running through your system and thanks to chemotherapy killing you appetite, that stuff just filters right on through you.
  6. Loss of appetite- yep, best weight loss program on the planet. P90X, the biggest loser and Jenny Craig got nothing on this little regiment of fun! Simple really, just inject your body with near death chemicals then lay around for a week fighting the urge to vomit. Now throw some hospital food your way (uh yuck!) and there is no way you are gaining a single pound sister! Oh snap!
  7. Multiple needle sticks and blood draws- ever wonder what a pin cushion feels like? Well no more, because my dear you are now the human version. Got the runs? You get something to harden that up through an injection. Got constipation, you get something for that in an I.V., need blood, antibiotics, pain reliever, or anything else to counter react what ever you were given an hour ago! In it goes, through a needle stick or straight through an I.V.
  8. Uncontrollable sleep patterns- One minute you are having a nice conversation and BAM! You are ass out for the next four hours! Wake up bright-eyed and bushy-tailed, ten minutes later and BAM!  Back asleep for 6 more. Heck you may even fall asleep in the middle of talking with your doctor! Dont worry that information wasnt important! It’s going to be this way for a while so get a really good pillow Rumplestiltskin.
  9. Radioactive urine: Now this depends on the type of treatment you are getting, but once you start chemotherapy no one is allowed to use that 1456562_10202602458089222_1239893847_nbathroom but you! Wouldnt want your coin purse to glow in the dark you know.
  10. Chemo sores in unexpected places. Yep that’s right boys and girls if you pump the system with chemicals and they exit through you urinary tract/bowels guess what? Your skin doesn’t like it very much and reacts with fervor? I’ll just let that picture soak in for a while as you process and visualize your own personal nightmarish looking sores.
  11. Last but definitely not least Hair loss. Complete hair loss. You killed all those “good” cells with chemotherapy which means you killed the cells that deliver nutrients to your hair follicles. So suck it up Telly Savalis. Sinead O Connor has nothing on you. But when you get your triple XXX tattoo please make sure it’s centered correctly upon your neck. I would hate for you to look strange.

Over the last week Jacy has experienced all of these with the exception of sores and  hair loss.  So far we are attributing this to very careful hygiene and a solid barrier of protection delivered through a specified creme.  Diligence has been the utmost of priorities.  As far as the hair loss I am still hedging on stubborn Cuban genes, but the doctor has assured us both the hair will go and when it does, she will just wake up one morning to clumps of hair all over her pillow.

Tonight we sat across from each other and played words with friends. I know it sounds silly or even boring but for me it was awesome! She is in great spirits after her first day off chemotherapy.  The bathroom is still never far from her reach and the nausea is still there, but her beautiful smile is larger than ever and that kick ass attitude carries the same resilience.

Our doctor continues to remind us we have a long road to travel. The shivers come on uncontrollably and usually arrive about the time she is really starting to feel better.  No matter what happens she will need a bone marrow transplant and it will be a long week waiting for the ability to draw her own bone marrow for testing to see where we stand in regards to killing all of the ‘bad” cells.

As many of you know I took the end of the month off because this was the week we were supposed to go away and be together just her and I.  A break from children, the ranch and life in general; the type of break every marriage needs from time to time to reconnect. She had been asking for me to make this happen for quite sometime.  Apparently she unknowingly decided how it was  going to go, and short of not being able to sleep together in the same bed. No bar or drink service allowed, no swimming pool or spa for us to lounge about during the day. It hasn’t been all that bad. We have gotten a ton of alone time, meals (well just hers) delivered to our room, turn down service, cable t.v. and some serious privacy.  We have also spent quite a bit of time gazing into each others eyes, holding hands and softly saying “I love you” while the sun sets over the eastern wall of Kaiser.

I couldn’t have asked for a better partner to go on vacation with, even if it’s in a hospital, with a life altering event hovering over our heads. I love you Jacy, you are my best friend, one hell of a partner, hands down the most beautiful person I know both inside and out! As I said the day we married, I cant wait to spend the rest of my life with you.

So lets keep kicking cancers ass!!

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The face of Leukemia

What does the face of Leukemia look like?

Have you ever wondered? Is it a conjured up image? Maybe one captured from a television show or 48 hours special? A poor soul, haggard, emaciated, pale, gaunt, one step near death. There are a dozen interpretations of what Leukemia looks like.

But I ask you?

Does this look like the face of Leukemia?

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Because it is……

This larger than life human being, my wife with the radiant smile and glowing eyes is the newest face of Leukemia.

Here is her story..

Will you come with me to my doctor appointment?

A question my wife has asked many times in our relationship and depending on the workload that day or severity of anxiety associated with the upcoming appointment, my answer is most always the same.  Yes

This time was different.

My wife has been sick on and off since coming home from Haiti in June. Being the incredibly strong-willed woman she is, it was always dismissed as exhaustion, a common cold or some viral snot delivered accumulation from booger flicking within the confines of her classroom.

Headaches, night sweats, red spots in her throat, swollen gums and an exhaustion level that just could no longer be ignored.  She had it all at some point. The final straw for superwoman came when she texted a dear friend and Haitian co-conspirator who happens to be her dentist. Having tired from the continued onslaught of over the counter drugs, sleepless nights and white spots in her throat, she caved in to ask for help. After a short dissertation in regards to symptoms the immediate response was; You need to go to the doctor!

She listened.

Blood drawn, panels sent to the lab and a phone call later we were summoned to drop what we were doing and return to hematology for a thorough screening in conjunction with a bone marrow draw.

A bone marrow draw? That means cancer right? Fear instantly ran through my wife like lightning! Together we made the trip to hematology and were introduced to a well spoken, polite young doctor that instantly understood our dry sense of humor.  (this always helps) She was fantastic, easing our minds, letting us know exactly what she was doing along the way.  After an hour I was dismissed from the room so they could retrieve bone marrow and complete the testing process.

During recovery, the doctor came in and told us she put a rush on the order and we should have lab results by Thursday a mere 48 hours later.

Walking silently towards our car we held positive thoughts.  A virus, that’s  all this could be, right? Just a mean old nasty virus! In Haiti, Jacy became extremely sick for two days and this just has to be some form of tropical bug! Yep a tropical bug that’s just hanging on wreaking havoc!

Sooner than later we would discover how wrong we both were.

The next day at noon while in the round pen working one of our many horses, my cell phone came alive. Answering a call where the first words are: “I’m coming home we need to talk” is never good, so when she said those exact words I begged her to please tell me what was wrong. To my surprise, she did.

Its cancer, I have leukemia so we need to head towards the hospital right away.

Its cancer? You have leukemia? What? Did I hear this correctly? No. That’s not what she said is it? I mean we talk almost everyday around lunch and I never remember her even slightly referring to these topics. How was your ride today? or How’s work going? or Man my classroom is filled with the most awesome kids! But never and I mean ever has the topic of cancer or leukemia been the center of conversation, let alone a fear filled opening statement.

Are you there? She asked me through shakey tear filled words.

Yep, was all I could muster. Chin quivering, tears streaming, face flush with heat and feeling like someone just kicked me in the balls. I continued to stand there afraid to move, afraid to blink, afraid to breathe.

Are you ok? I asked

No, was her reply. Of course no is the only reply to such an asinine question yet at the time it was all I could say without blubbering over the phone.

We talked for a minute about why the results came back so early and the importance of leaving for the hospital right away. A few moments later we solemnly said our goodbyes.  Putting my phone back into my pocket, I continued standing in the arena motionless as my horse worked herself. She continued running circles around me finally slowing to a trot, then a walk, looking at me as if she knew something was wrong. After a few minutes with no interaction from me she moved towards me and put her head in my hand. Animals know, animals that give love in return know how and when to move in at just the right moment. I hugged her back.

My wife cried some at work, gathered herself up and cried some more. Other teachers rallied around her as the news broke, spreading like wildfire across the small campus. She received a ride home from some great co-workers so she could pack for our newly, unplanned vacation getaway to Kaiser hospital. When she pulled in the driveway my heart stopped.

Once home we held each other and cried. We wondered how we were going to explain this to our kids, pondering who should know and who shouldn’t know, wondering when do we call our parents? What are we supposed to be doing? You hear about this stuff all the time but your arrogance never lets you believe it is going to happen to you!

Feeling so confused I didn’t know what to do, how to do it or even how I was supposed to act after finding out the woman I love has cancer. I mean it all seems pretty straight forward until it happens to you! Well none of it  mattered, because the news took on a life of its own and before it got out of hand (rumors and all) my wife made a preemptive strike by posting on Facebook exactly what was going on. It worked! We were able to let everyone we cared about know without any chance for misconceptions or the possibility of someone we care about not knowing or hearing third-party from someone else.

My wife has leukemia, my wife has leukemia, holy shit my wife has leukemia, no matter how you say it, it sounds ridiculous, preposterous, and impossible. My wife has leukemia.

Leukemia

Leukemia (American English) or leukaemia (British English) is a type of cancer of the blood or bone marrow characterized by an abnormal increase of immature white blood cells called “blasts”. Leukemia is a broad term covering a spectrum of diseases. In turn, it is part of the even broader group of diseases affecting the blood, bone marrow, and lymphoid system, which are all known as hematological neoplasms.
Leukemia is a treatable disease. Most treatments involve chemotherapy, medical radiation therapy, hormone treatments, or bone marrow transplant. The rate of cure depends on the type of leukemia as well as the age of the patient. Children are more likely to be permanently cured than adults. Even when a complete cure is unlikely, most people with a chronic leukemia and many people with an acute leukemia can be successfully treated for years. Sometimes, leukemia is the effect of another cancer, known as blastic leukemia, which usually involves the same treatment, although usually unsuccessful.
Leukemia can affect people at any age. In 2000 approximately 256,000 children and adults around the world had developed some form of leukemia, and 209,000 have died from it.[1] About 90% of all leukemias are diagnosed in adults.[2]
The name comes from Ancient Greek λευκός leukos “white”, and αἷμα haima “blood”

Wikipedia

Arriving at the hospital we were sent directly to a room on the fifth floor. She was told to put on the standard issue gown and relax.  We looked into each others eyes, held hands and sat together on the bed, waiting for someone, anyone to tell us something, anything. A couple who the day before yesterday was riding horses together without a care in the world was now sitting, scared, wondering about the future for ourselves, our children, and our family.

We wouldn’t have to wait long…

A letter to my High School Senior

A letter to my son the high school senior

As your father, I have spent an innumerable amount of time thinking about the inevitability of you becoming a high school graduate this year, heading off to college along with you walking out the door into the world as a man.  There for I feel as though it is time to “check in” with regards to the realities of life surrounding you these days.

Where are you mentally?

Do you feel as though your mother and I have prepared you for a life away from your family?

Have I presented a good image of not only a male figure, but a man for you to reflect upon and draw strength from when emotionally or physically drained?

Do you have an inkling of strife, injustice, immorality, ethical shortcomings, death, financial ruin, and some of the day to day struggle this world will lay upon you?

Can you keep an open mind and remember that everyone in this world deserves to be treated as a human being? No more, no less than you would treat yourself?

Have we taken the time to enforce a belief system which lets you see people for who they really are? Not the facade they may hide behind or trappings they live within, but who or what lies beneath? Separating the good from the bad, the kind hearted from the evil spirited? Can you spot an intelligent, well rounded person from a poop spreader at a hundred yards?

Here are a few things I think you should know.

This country is yours for the taking, by that I mean whatever suits you be it play, work or just day to day life, do it with fervor, passion, love and intensity as God has given you one life, no more, no less and we never know when our number is up. So do what you can for not only yourself but those who surround you and those who need your help.

When was the last time I reminded you it is better to give than receive? Not gifts of tangible make up, gifts of hard work, sharing, compassion and the best gift of all, love.

Remember that “love” is not just a word to be tossed into the wind like withered leaves of fall.  Today people use this word as a bargaining chip, it is held hostage for emotion, traded like commodities to be sold to the highest bidder. There is no way you can honestly love another unless you can love yourself. Like who you are, be proud of the things you enjoy and participate in with pride and never let someone else change that about you because then you are just living for that person and soon you will cease to become yourself. That is not love, I don’t know what to call it but love it is not, for love is a two way street where you are appreciated and enjoyed for who and what you are and that feeling is mutual. Love cannot be forced, sometimes love just isn’t there and that is ok.

Love is a feeling so strong it grips your chest, tears your heart, makes you cry at the thought of losing its powerful hold.  Love is a lump in your throat, sweat upon your brow, a smile behind your face, a caress that lasts forever yet only a second passes. Love will make you dance though you don’t know a step, giggle when all alone, long to be in the presence of that you love the moment you have left love behind.

Notice son, not one statement I have made compares love to sex, for sex is an act, you don’t need love for sex; you only need an urge and a willing partner. Oh many will try their best to persuade you that love and sex is in fact the same beast, but lo they are not, they are as separate as water and oil. Only the weak of mind combine the two, strongly claiming the one (sex) to be nothing more than love itself.  But love, true love will leave you weak at a touch, warm in the cold, happy even during the hardest of times. Love true love is what you have left when time grows short and the light grows dim, when you can hold someone’s hand asking for nothing more than that moment in time, love will guide your way.  You will learn all these emotions and figure out how to use and learn from them and one day, long after I am gone I hope you will smile at the love I have shown you.

Relationships are like walking a tight rope; sometimes the rope is large and easy. You know beyond a shadow of a doubt there will be no trouble and that rope holds strong and true safely carrying you across the pitfalls of any relationship. Other times that tight rope is small and shaky; your fears continue to evolve, leaving you wondering if you should continue risking it all, possibly even plummeting to your emotional death or do you turn around to find another rope more to your liking.  You will walk them both and all I can say is learn from each journey, so when the right tight rope comes to cross you step out with confidence that it will hold, leading safely across the relationship crevasse towards joy and happiness.

This country was built on a political belief system.  Do not under any circumstance let your friends decide what that belief may be.  There are many parties to choose from and you need to look deep inside yourself and determine which one best suits you.  I am fairly sure you know your father is conservative, but that does not nor ever will mean you should be.  As your father I welcome any choice you make and look forward to the intelligent conversations we will have over such a selection.  Truth be told, I call myself a Demublican.  Both Republican and Democrat as there are many wonderful ideas and strategies surrounding both parties.  Whatever you choose do not hide in the shadows, this country says you have a voice so use it while you can.

Stay healthy.  You will go through a phase in your young adult life where you will abuse your body by staying up to late, eating horrible food (delicious mind you but not healthy eating) and drinking way too much.  It happens to us all and the only thing I can say is never forget about staying fit, eating right, not indulging too much. Moderation is and always will be the key to social survival.

You will be tempted to do stupid things all in the name of fun and humor. Some you will get away with creating memories that last a lifetime, but remember before choosing to risk it all, ask yourself; is the juice worth the squeeze?

Always be a leader not a follower, stand up for what is right and admonish those in the wrong.

In conclusion

Remember your roots and those who helped you throughout this crazy journey called life and no matter where you are or what you are doing, I promise your mother and I are thinking of you as we will always be your parents.  You have been a joy to raise son, I can’t believe you are almost a grown man, the time has flown. I miss the little boy waiting for me to return to the fire house with a teddy bear in his hand.  I have enjoyed watching you succeed at dang near everything you have tried. You continue to leave your mother and I spellbound at the ease with which you make life appear.  We are incredibly proud of you and know beyond a shadow of a doubt what a fine adult you will become.  The door is always open; this will always be your home and remember our love for you is eternal.

I am and always will be proud to call you my son.

Dad.

I have finally discovered it’s a lie!

 

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It’s a lie, it’s all been one great big fat lie! I don’t know what to believe anymore! My inner self-worth has been annihilated, any resemblance of an ego obliterated and then there is the whole trust issue! Yeah that’s right I said it, T R U S T….. How on earth am I to trust anymore? Huh? Huh? What? Yeah I know, its like impossible now!

Maybe I better go back to the beginning.

(flashback mode) diddledoooo, diddleeeedooo, diddleeeedoooooo

Fourth grade and Mrs Schultz asks: Betty what do you want to be when you grow up? Now first of all its a really nice Norman Rockwell image but COME ON!!! What kid in fourth grade truly knows what they want to be when they grow up!

I throw out the only answer that comes to mind. Now before I tell you let me just preface by saying these where the days of TV shows like B.J. and the bear, White line fever and of course my personal favorite Smokey and the Bandit! “10-4 good buddy, come on back you got the Schoolboy 9 on this end!”

So if you havent guessed it, my choice of all the wonderful far-fetched career paths to be pie eyed and moon struck over was that of the truck driver! 18 wheels, coast to coast, my adventures would be never-ending.  Hauling materials to those in need and maybe even solving crime along the way.  My truck was going to be a cab over Kenworth (red) with more chrome than a 57 Chevy! Yep I had it all figured out.

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Unfortunately Mrs Schultz didn’t see it that way. For as soon as I spun my web of fantasy over the 18 wheeler I then heard from her terse red lips the common denominator that would haunt me for the rest of my educational experience. A truck driver? Are you kidding me? Son this is America, where you can be what ever you wish to become.  A images-18smart kid like you could be a doctor, or scientist, a policeman, fireman or heck if you work hard enough at it one day maybe even the President of the United States! Apparently according to everyone elses standards becoming a truck driver did not fall into the parameters of becoming what ever you want in America!

So whats a lad to do? I did what any other young man in my position would do, I tried to become everything but a truck driver. Farm hand, dishwasher, construction worker, salesman, cowman, delivery driver, dairyman and so on. You know what? I hadn’t become educated at all.  I struggled all through school, I was never tested to see if I had a learning disability or if the courses were above my comprehension level.  Always scolded for poor grades and reminded by my parents alongside administrators that with a little more effort maybe I would amount to something. Reminded constantly that in America you can be what ever you wish, as long as it isn’t a dishwasher or farm hand, construction worker, salesman, cowman, dairyman etc…. All the things I actually enjoyed doing.

When high school was over it felt as though a giant burden had been lifted from my soul. No more daily disappointment, no more struggling through classes, trying as hard as I could only to receive a C or D grade. I didn’t graduate with my class, I finished at a community college over the summer, testing and passing my GED with outstanding scores in every subject! Confusing huh? Either way I had that paper in hand, and it was time for me to enter the world, where I worked as a construction worker, dairyman, car salesman, cowman and overall farm hand.  I was happy. It suited me, I didn’t make any money but I also didn’t care.  My family was confused with my choices, these jobs to them had no future, no means of long-term sustenance.  It wasnt what parents wanted for their children in America! Nope, here in the states anyone can be anything and do what ever they choose.  Want to be a doctor? Just find the funding, go to school and whala! You are a doctor, revered by all who see you and the talk of every mothers book club! She must be so proud! He works on a dairy? Oh honey I am so sorry he let you all down. (must be a sign of poor parenting)

I finally got the nerve one day to ask my boss if I could drive his 10 wheel tank truck. He said yes and after two years of hard work, long hours and very few days off I earned the opportunity (key word being “opportunity”)to get behind the wheel of his 18 wheel hay truck. A few more long days of practicing backing it up, moving it around the dairy both loaded and unloaded and before long-wait for it-wait for it- have you guessed yet? THATS RIGHT MRS. SCHULTZ I WAS DRIVING A SEMI-TRUCK ALL OVER NORTHERN CALIFORNIA!!!! WHOOP WHOOP! She was blue and chrome and covered in shiny aluminum and she was all mine!!!

I spent ten years driving hay trucks, logging over a million miles. When I decided the dream wasnt all it had been cracked up to be (no crime fighting you know) I went back to school and after 5 years of working 90 hour work weeks, volunteering at one fire department while working part-time on Sundays (the only day off I had) I landed a full-time gig as a firefighter for the department I continue to work for to this day 18 years later.

So I am sure you are scratching your head wondering where the lie is? Betty acquired a respectable job after all? What the heck?

Today I am surrounded by children of all ages. Helping at schools, my wife being a teacher, having taught High School Fire Science for 5 years, 4-H, FFA etc… And what I see scares me. Scares me to the very core of my being, and because of this lie perpetrated upon myself and generations of children it is only going to get worse.  I see children walking around with their heads full of shit! I see a school system developed to check the boxes, not explore the possibilities, I see bright inquisitive minds  molded, compressed, held back, all to meet a systems ideal of how children should be taught.  As if all minds worked exactly the same, all brains absorbed information at the same rate, all eyes see exactly the same information you the teacher have so carefully placed upon the school board.

When I look into a classroom or gaze upon a group at practice it’s so obvious there little gears are all turning at different levels.  Ask them to perform, if you are truly paying attention then you will see one maybe two get it the first time, three-nine get it the second time and 3-5 are still processing with one or two so utterly lost they use humor or anger to hide their mistrust of the educational system, coaching and the adults who have lied to them all along.

Why are we as a society standing by, allowing this to happen? We preach children are our future then walk away, dropping the most precious soul we have at the school door hoping a state-run system will prepare them for the world! The United States ranks 17 in the world for education. That is 17th out of 40 countries, I am sorry not everyone gets a trophy on this one people! Wake up! Our children are learning how to check the boxes, they no longer have the ability to think for themselves, they need multiple choice answers to make an attempt at anything and I am sorry if this pisses anyone off but why aren’t we testing them early to determine what they ARE good at instead of filling their heads with shit! Lying to them constantly by telling them its ok, you can be what ever you want to be! Just try harder next time! No matter how hard you try or don’t try, everyone will get a trophy, everyone will get our prescribed education, everyone needs to understand you can have what ever you want or need because you are an educated American which leaves you automatically entitled to it all!

Liars!

How much better would our society be if all children were tested, thusly developing a plan to educate them accordingly. Children from 1-12 grade would develop a stronger sense of pride through accomplished work.  Work that not only do they have the ability to understand but actually excel at! WOW what a concept! Educators knowing who has the mental acuity to thrive in college bringing our countries A game to the highest level.  Educators also knowing who will thrive in trade schools and wow what a difference they will make with workers proud of their jobs, bringing careers to the highest of levels because they have found success through hard work and understanding of the processes associated with these career choices.

Listen I know it’s not that simple, but I also know whats happening now is not working. It didn’t work when I was a child and it surely isn’t working with 30 years of revisions. I spent the better part of my childhood ashamed that I was stupid, terrified of tests (something I still struggle with as an adult) and mentally not prepared for the world by my parents or my teachers. To this day I feel lost when I can’t figure something out, ashamed to ask for help, in fear of being reminded of just how dumb I really am. Why? Because that’s the education system I was raised in, told to sink or swim, toe the line or be towed, then patted on the head and reminded I can be what ever I want to be! It was all a lie.

images-16You cannot be anything you wish to be, and a society that frowns upon those who wish to become part of the blue-collar group is a society destined for failure through the creation of uninspired and lazy human beings. Chastising them will only push them away from what they love, not teaching them the basics of blue-collar work and cheering their successes will only develop more animosity and hatred towards society.  At some point a person tires of hearing how their choices are a failure and they just quit. It’s an ugly circle and you can see its effects daily in the news.

On the flip side how many children who are naturally quiet, reserved and fearful of the monster that is our 40 child classroom one way of learning educational system are freaking geniuses? How many undiscovered talents quietly sulk in the rear of classrooms across this country because fear keeps them from learning? Future Mensa card holders never to discovered due to a system that would never find them.

Lets stop the lie. Lets go back to fostering young minds, drawing out creativity, celebrating the individual, and developing unashamed, caring human beings filled with knowledge, empathy and love.

So yes today I finally figured out it was all a lie and no matter how hard I try I am not going to become the President of the United States, but if we could just become fifth in the world of education, then maybe everyone can have a trophy….

“A young head filled with shit, will eventually become an older self entitled shit which in turn will blossom into an adult piece of shit! Useless to themselves and society as a whole because they just dont give a shit.”

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