illness – Page 3 – They call me Betty

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..

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