Children – Page 8 – They call me Betty

The Face of Leukemia- A day for surprises…

December 20, 2013 theycallmebetty1 Comment

What does it mean to “touch” a life?

Everyday we walk this earth, worrying about our “in the moment” crises, complaining about our “bad” days, struggling to get ahead, feeling father and farther behind. But do you know what it feels like to actually touch someones life? To be that moment, that bright and shining star leaving someone wanting to see you again, yearning to feel the warmth your presence brings. Do you?

I believe everyone does. I believe every single person walking the face of this earth is just what I described to someone. Maybe to more than just one, but at least one person in your life feels that way when YOU walk through the door.

It becomes very easy to forget what our presence can mean to people in our lives. As I previously stated life itself does have a strange tendency to get in the way. But what if we could look outside ourselves for just a minute? Have the ability to look back upon our lives feeling the emotions within people surrounding us. Know in that moment of weakness leading us to complain about life, while feeling down upon ourselves that those moments are ok, but in reality are really nothing more than a waste of our energy. A waste of our precious time. What if we could do that before we leave this earth? Before it is all recounted upon the lips of a friend or family member without us ever knowing?

Today-

Today I stood by while my wife was mobbed by students at her school. They looked like puppies held at bay as we rounded the corner onto a black top designed for play. These children lined up into perfect rows, facing their teachers. Until one noticed a look of surprise cast across another’s face, and as most inquisitive minds do, turned to see what caused such a shocked reaction. It started slowly, a gasp, then murmurs of Ms.Jacy here, and another there, until they all were screaming it loudly! Ms. Jacy!!!!! MS. JACY!!!! Not knowing whether to run or stay in perfect formation the looked; “like puppies on a leash”. Until they could no longer contain themselves and all it took was one puppy to break free from the constraints of rules. They came fast and I saw a smile arise from my wife (Ms. Jacy) and emotions shared from these children that said to me; this is her moment. She now knows…

This was the moment as a human being you hopefully realize you mean more to the world than your little daily problems will allow you to believe. A moment when you stand back and let a wave of love overcome you. A moment that most people won’t realize until its to late. Watching my wife smothered in love from both students and co-workers today left my heart aching with joy. At one point while speaking to some colleagues she began to cry at how much she missed them all, how much she loved her job, her classroom and what it meant to be a teacher at Dixon Montessori School, surrounded by colleagues who felt as she does towards these children.

She cried and I stood aside; normally I would have swooped her up, protected her, whisking her away, shielding her from emotional pain. But in this one moment, I just stood there, gulped down hard as to not look weak and let her friends, her co-workers surround her with love. This was her moment of clarity and I prayed she was, for a second standing outside her body to see, just what she means to these kids, these parents, these friends.

We left after roughly 30 minutes or so, Ms. Jacy becoming increasingly exhausted. As we walked through the campus, several children grabbed at her sweater, looking for hugs, looking for a smile, looking to tell her they loved her, missed her and couldn’t wait until she returned to them, healthy and whole.

It was in fact the longest walk ever, back to the car.

Cancer sucks, cancer changes your life forever. Our lives together will forever travel a new and different path aligned with Leukemia but together will win this fight.

As you head into this holiday, who are you a shining light for, who waits to see you smile, what family member(s) want nothing more than to spend time with you? Who makes a difference in your life? Who can you not wait to see? What person(s) take up every moment of your thoughts because of the joy they bring into your life?

I beg of you, find out if you don’t know the answer to these questions. Dont waste time wondering, don’t wait until its to late to know.

Today witnessing the empathy and caring my wife has shared with so many others, her passion for being a teacher and friend, that same love and emotion shared in return; just being a part of that experience with her, leaves me feeling very blessed.

Of course I already treasure the gifts she has brought into my life. I know who the one person is that I yearn to see, that I long for, whom I cant wait to see walk through the door. The person who brings light into my life.

Just look at her smile, it says it all…..

The Face of Leukemia (December 18, 2013)

December 19, 2013 theycallmebetty4 Comments

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..

The Faces of Leukemia. Today

December 16, 2013 theycallmebetty2 Comments

Today the faces of leukemia came from far and wide. Gathered in a small gymnasium to help support a teacher, a mother, a wife, a friend. They came from church, a walk on a warm Sunday afternoon, they came from the store, Christmas shopping, from watching the football game, but they came. They came to be tested, a simple DNA swab of the cheek looking to be the next bone marrow transplant match!

Today the faces of Leukemia looked me in the eyes. Some cried, many smiled, almost every one of those faces hugged me. People I have never met, people who know people, who know my wife, people who know people, who know other people who know my wife. People.

Today the faces of Leukemia were happy, excited, the way one is excited at an opportunity to win the lottery and in an offhanded way they did have that chance. Becoming a bone marrow match is truly (in my opinion) an honor. One bestowed upon a “hero”. Because that’s what you are once chosen. A Hero! You now have the ability to change someones fate. Helping save a life simply by donating something you have matching something they need to survive. If that isn’t heroic then I don’t know what is!

Today 193 people made it into Blood Sources registry! ONE HUNDRED NINETY THREE new members of an elite club, praying they are chosen to receive that call! They may never get the call but like winning the lottery even though the chances are slim, you can’t win if you don’t play! And play they did!

Today the faces of Leukemia continued to come and go, many I knew personally, more I did not. This day, this Sunday in a small school gymnasium, I hugged more people than ever in my meager life. Each and every one of them who asked or just greeted me with a hug received the very best hug I could give. It was least I could do to say thank you on this day, today.

Tonight my heart tonight is overflowing with love. Emotionally spent, tired, typing this is extremely hard as for once finding the right words to describe these feelings is challenging. My family is like everyone else’s family, we work hard, go to school and church, we donate when we can and always try to help our fellow neighbor. We are nothing special by any means. But today it felt as if my wife was a rock star! She has always been one as far as I am concerned. But I guess our little town thinks so too! So humbling, so amazing, so inspiring, so much love and admiration held for everyone who helped run our bone marrow drive along with every single person who took time from their day to come down.

Today when we opened the doors at 0900 and started setting up I prayed we would get at least 50 people. 50 people would have been awesome, as 10am rolled around some friends came by and a few more trickled in. My sister was there working a table along with lots of personal friends and coworkers. Standing out front all I could think was dear lord just let us get 50 registered today please! I never ask you for much, I always ask on behalf of someone else, but please help me out today with at least 50 people joining this registry.Then at around 11 am it happened. Cars came in slowly at first then a little more and suddenly we were inundated with people from everywhere! Shaking hands and hugging people I knew, didn’t know, friends, family and acquaintances! They just kept coming and coming and it was, well it was, AWESOME!!!!

Today a community pulled together for one of its own and that person just so happened to be the woman I love, my best friend, my wife. Talking with a dear friend it came to discussion how amazing it is, we all live together, go about our daily routines, passing each other paths without so much as recognition at times and yet when one is in trouble we all head the call. We all band together to protect one of our own and even if you don’t know that person, you may be friends or family with someone who does and that’s good enough for you. Now they are one of your own as well.

Today talking with all the wonderful people of this town it amazed me how true that last statement really was, as through these conversations I knew people in passing. As friends of friends, as family members of other family members, and in realizing this just how connected we all really have become. A community. Six hours came and went in a flash. It was astounding. Reporting home to my wife who was surrounded by close family and friends, she sat in awe of all the fuss. But to me it makes perfect sense. We all touch someone in our lives, some of us are fortunate to touch many people either in spirit or through deed. Jacy is one of those people, she shines brightly on all in her life. She brings a joy and happiness to those around her that is hard to deny. She cares about everyone, is passionate about her students, and loves her family. She is Jacy.

Today I saw the true meaning of community. Today we may have saved someones life. Today I felt love and compassion on a whole new scale. Today I came home humbled by it all. Today I thanked God for answering my prayers.

Today, is the start of tomorrow. Thank you all for giving me that…

Tonight I will sleep quietly next to my sweet wife, wrapped in the warmth of every single hug I received,

Today.

Still kicking cancers ass one cell at a time!

The Faces of Leukemia (December 14, 2013)

December 14, 2013 theycallmebetty2 Comments

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 home 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 and 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….

(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)

December 12, 2013December 12, 2013 theycallmebettyLeave a comment

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..

The Face of Leukemia (December 7, 2013)

December 8, 2013 theycallmebetty1 Comment

Hair:

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.

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.

You both laugh until snot blows from your nostrils then fall into each others arms with smiles upon your faces.
You realize in that moment you partner is hands down the most beautiful person you have ever known.
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!

Kicking Cancers Ass once cell at a time!

The Face of Leukemia (December 6, 2013)

December 6, 2013 theycallmebetty1 Comment

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

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!!!!!

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!!!

The Face of Leukemia (Saturday Nov 30 2013)

November 30, 2013November 30, 2013 theycallmebetty2 Comments

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.

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.
Hot flashes- these aint no menopause, room is spinning type hot flashes either! These suckers come on like a mid summer Texas heat wave! There isn’t enough water in Lake Tahoe to cool these bad boys down.
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.
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.
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.
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!
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.
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.
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 bathroom but you! Wouldnt want your coin purse to glow in the dark you know.
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.
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!!

The Face of Leukemia cont….

November 27, 2013 theycallmebettyLeave a comment

Fast forward a few days…

From Friday through Tuesday we have experienced highs and several lows. I could bore you with the day-to-day activities but really there is only so many ways you can describe helping your wife get up, put on her socks then carefully assist her with going to the bathroom. She has named her I.V. stand “Neberkenezer” and I have done my best to screw that name up each time she asks, because I know if I frustrate her to the point of laughing she is still fighting. It’s a little known combat tactic I like to call “Taming the Cuban”.

There has only been one major incident and that was Monday morning while I was returning from a short trip home. Jacy decided that since the nurses were changing her sheets she would get approval to take a shower. Having felt pretty strong up this point our Superwoman gets the ok, has the I.V.’s disconnected and wraps her arm in cellophane as to not contaminate her ports. From what I understand it was the shower of a lifetime, warm cleansing, fantastic for a person who hadn’t been allowed to shower since Wednesday. Standing in front of the mirror afterwards she felt a little dizzy, turning around to head out of the bathroom all she remembers is calling for Emma (another AWESOME nurse) as she collapsed and hit the floor. She awoke to an entire team of hospital personnel working one her. What woke her from this unintended slumber you might ask? It was a doctor screaming to his team member to intubate! She mumbled I am fine several times and everyone began to calm down. Jacy had encountered a bout of Syncope.

“Syncope (/ˈsɪŋkəpi/ sing-kə-pee), the medical term for fainting or passing out, is precisely defined as a transient loss of consciousness and postural tone, characterized by rapid onset, short duration, and spontaneous recovery, due to global cerebral hypoperfusion (low blood flow to the brain) that most often results from hypotension (low blood pressure).”

Poor Emma tried to catch Jacy and when she couldnt she tried her hardest to get her onto the couch adjacent to the bathroom. When that didnt work and she couldnt reach her phone she had to hit the panic alarm, this signals “Code Blue” which is cardiac arrest in a room. Needless to say the hospital sprang into action and as my wife put it with an embarrassed smile upon her face; “More people saw me naked in that one moment than have my entire life”!

Needless to say I walked in and was shocked! I looked deep into her eyes, with the obvious strain of a worried husband. held her hand tightly and with a slightly turned up smile said: Really! You couldnt have waited to get naked for five more minutes! Maybe I wanted to see some of that! Ohhhhhhh I get it, its all about the attention! What ever!!! Show off!! We chuckled, I hugged her, then she drifted off to sleep one more time..

The chemotherapy treatment is extremly hard on the body and even through the strongest of human beings it can desmate a persons desire to try. Jacy has kept a postive spirit even when she started feeling as though never getting up again was a viable option. These chemicals have a nasty way of tricking your brain into believing you are feeling better one moment then slapping you in the back, carefully holding thier mind altering thumb down upon you. Its affectionatly known as “Chemo-Brain”

Jacy has slept more in the last week than in her lifetime. Although this is a good thing as it allows her body to work really hard without her feeling anything it also leaves me at her bedside concerned. Not for anything in particular but because I cant speak with her. Just being by her side isnt good enough for me, I have just enough medical knowledge to know too much and not enough medical knowledge to be satisfied.

The what is, the how too’s, ifs, ands, whys all running through my head like a runaway train. By ten at night my brain is so exhausted I cant form a ledgible sentence. So everytime she wakes, I smile, kiss her forehead, help her out of bed and walk her slowly towards the bathroom with Neberkenezer in tow.

We have tried daily to keep her walking as this is vitial to keeping her strong. Her distances are getting shorter as is her ability to breathe under exertion. That is also hard for me to watch as we all know this wonderfully vibrant woman as the spin instructor, runner, horse rider, saver of all dogs, haitian children and all around go getter that she has become over the years.

Our family has been blessed with an outpourning of support from close friends, both of our work associates and the community as a whole. These wonderful souls have lifted what normally would weigh heavily upon my mind as I feel the love and support all around me. I could never have asked for a more wonderful community to have chosen to make my home.

I also have a different understanding of wants and needs. Its one thing to want things, another to need things, but to see somones ability to thrive unwillingly taken away from them makes all those personal wants and needs seem a little ridiculous.

As of Wednesday morning my wife wants to beat cancer. As of Wednesday morning I need my wife to beat cancer. My children need thier mom to beat cancer. My children want thier mom to come home. Our entire family and community need this wife, mother, daughter, granddaughter, aunt, sister, and friend to beat cancer and come home. I will settle for no less, she will settle for no less, I will stop at nothing to ensure this happens, I know she has the fight in her, I know in my heart she will triumph but in the end it really does make wanting or needing anything else seem pointless.

The Face of Leukemia cont….

November 26, 2013 theycallmebettyLeave a comment

(Sorry everyone I am a little exhausted today and my writing shows)

The next day brought a tsunami of nurses and doctors. They filled into Jacy’s room, each with a different explanation, each with an intended purpose, each wanting to ensure we knew what was happening and why. They were fast, they were thorough, they came and went just as quickly. They were also some of the nicest people I have ever met. I mean seriously generous, kind-hearted, nice people.

You know what I am talking about, the kind of people you see in a small town where everyone knows everyone and when someone is down they all rally behind that person with empathy, generosity and love. Wait that sounds familiar? Nawww that doesn’t happen anymore these days. (sarcasm)

Anyways the first nurses we became acquainted with were JoAnne and Wayne. Wayne is a 40 year veteran in the nursing profession and it shows right away. His knowledge and approach with patients is mesmerizing. This man could teach a very successful class on customer service. JoAnn is hilarious and does her absolute best to keep us in good spirits from the moment she strolls through the door. She is absolutely adorable, her and Jacy hit it off right away, a new friendship is born.

The morning is filled with more needle pokes, more blood drawn, and an echocardiogram of Jacy’s heart. This was needed to ensure her heart was healthy enough for the Chemo meds as they are extremely toxic to heart muscle. So a baseline for cardiac output is measured, tolerances devised and the green light given for treatment.

Dr. Truong comes in to discuss possibilities and probabilities in regards to Jacy’s treatment of chemotherapy. We sit together in awe as numbers, types, statistics, age, medicines and death are all thoroughly covered. In the end Dr. Truong tells us it doesn’t matter what current statistics are, what matters is you the individual. You, your brain and your body will determine the outcome of this procedure. She emphasizes a positive attitude will get Jacy along way during treatment. She looks up to see Jacy smiling her patented big radiant smile and instantly knows attitude isn’t going to be a problem.

Within minutes the I.V. stand becomes loaded with several cocktail mixtures for inter venous consumption. Lines go in, Jacy lays back and before long my lovely wife, who three days ago thought all was right with world is now a Cancer patient in treatment with chemotherapy.

We spent the better part of the afternoon talking about the last ten years together, where we came from and where we hoped to be when we retired. Promises made to slow life down when we walk out of this hospital, but I know deep inside that isn’t going to happen. It takes a lot to hold down two jobs, run a ranch and save little puppies from death (Coopers Good Dog Rescue) then raise four children while participating in kids sports, 4-H, FFA, high school rodeo and well good old life in general. Truth be told it has created memories we will cherish together always. We talked about everything under the sun but do you know what we didn’t talk about? Letting cancer win! Thats right, positive attitude all the way! Every one of our conversations about the future had the two of us in it, no death, no separation, only triumph and togetherness. Our conversation started winding down, we made fun of cancer a few more times, even held each other and cried one or two more times. Then we sat back and began to wait. For what I did not know, but we waited…

While all this was happening, behind the scenes at home an army was taking shape. A collage of human spirit weaving its way slowly together getting stronger and stronger by the minute. It was amazing, I had received a few phone calls from loved ones and very close friends within minutes of Jacy announcing her condition of Facebook. But those few phone calls started a ball rolling that like a snowball tossed gently down a fresh snow covered hill, grew larger while gathering size and speed until it would become an avalanche of love and support so great that people wanted to be consumed by its force and power. Humbling to the say the least.

Night rolled into day and I awoke, rolling off the couch from hell to watch the nurses change out a fluid bag on my wife’s I.V. stand. She awoke feeling fine, just a little tired and still ready to kick cancers ass!

By 11 the Dr. Truong had re-emerged bringing her infectious smile to our room. We had a very nice conversation where she explained the importance of a spinal tap on Jacy to retrieve spinal fluid. The Spinal fluid would be tested to ensure no cancer had spread to jacy’s brain (this of course would be devastating) or was trapped within the spinal column. If so this would lead to a chemo treatment directly into the spinal column itself. No one wanted that…

Jacy is still bouncing off the walls with positive attitude and posting pics of herself on Facebook. This is good for her, as the higher her spirits for a longer period of time the better mental state she will be in when the chemotherapy really does make her sick. I sit patiently by her side, knowing that moment of nausea will come soon. She has three “pushes” of high does chemo drugs to go through and the first is tonight.

At 5 pm the nurses assemble for the first “push”, they are covered in gowns and face masks, it looks as though this process should be a scary thing not a positive one. It lasts for 30 minutes, is monitored by nurses for any abnormalities within jacy’s vital signs and the nurses kick me out of the room when it happens.

Walking the halls I am sick to my stomach! I still can’t believe this happening to us! But I promised to be positive, so here goes. I am positive we are going to beat this! I am positive my wife is going to be fine. I am positive I will love this woman to the very end! I am positive I can handle all of this for myself, my wife, my family, and my friends. I am positive we are going to kick cancers ass…

And it all starts right now!

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