Three sons

 

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There once lived a man who had three sons.

A smart one

A big one

and a, well a, very talented, exceptionally gifted, with a wonderful crazy sense of humor one.

These three boys were as different as different could be.

The smart one wanted to spread his wings and fly, see the world, make his mark all while bringing his form of justice to the unjust.  The smart one holds a higher sense of moral responsibility combined with a sly dry whit that usually becomes apparent for those who don’t understand by a wicked smile, etched upon his face.  He’s a charmer when need be, mean when cornered and generous when the moment suits him.  His eyes are piercing, mannerisms awkward at times, he is almost ready to walk forward into adulthood. Handsome and fit, he is everything he believes himself to be. Ready to mount up and ride off into the sunset. This son will go very, very far in this world and I know deep inside no matter what he does it will be a success and he will make it look to have been easy..

The big one- Well lets talk about the big one. When I speak of his size it is in reference not only to his outer appearance but his inner one too.  Big hands, big feet, big arms and legs. Big heart.  He loves a good laugh and is gullible as hell! His smile is infectious, his eyes bright and unassuming.  He will lift a tree off you if you promise to be his friend. He is neither dimwitted nor overly intelligent. Yet his mind works in ways that most with high IQ’s would never understand. If you need help he is usually the first to arrive and the last to leave, that is unless his feelings are hurt, then he mopes for a while, kicks some dirt, forgives you and gets back to the task at hand. He is every-bit the young man I hoped for and someday he will hopefully be every bit the man some mother had hoped her daughter would find.

The crazy sense of humor one- Sweet and cute, silly and timid, sly and outspoken, wild and at times overly emotional, this lad encompasses them all. There isn’t a young woman or mother who hasn’t doted over this charming, good looking young man.  He loves a good practical joke and will do or say just about anything to make you smile. Witticisms roll of his tongue like a barrel through Niagara falls.  He is a mammas boy and you better not hurt him or the smart one and the big one will make your life miserable.  Besides the last time those two checked this lad was brought into the world for their amusement.  He loves all things big and small, and has a deep sense of responsibility when it comes to the lives of animals.  Don’t let that cute smile fool you either, cross him and like the Tasmanian devil you will end up on the wrong side of a knuckle sandwich! Don’t say you haven’t been warned. This boy will always be a charmer and those around him will find him hard to resist.

The man spent all his time trying his hardest to raise these boys. Give them a definite sense of right and wrong, good and bad, all while recognizing the pure evil some people hold inside.  Manners and behavior, work ethic and rest time, just and unjust, teachings done while taking care of a family struggling through tragedy.  The man loved those boys more than anything in the world and wanted nothing more than to see them succeed in life.  Live to the fullest! Never, ever be afraid to follow your dreams, and never let anyone tell you; you can’t! The man spent endless hours working on them, honing them, shaping them for an unknown future, in hopes the work he put in would pay off in the end.  Oh they didn’t always see eye to eye and many times the man would growl like that of a cornered mountain lion only to get a sharp stab from one of the young juveniles wielding a stick. But in the end out of respect the three boys always came around to the mans way of thinking.

He loves them all and they love him.

There once was a man who had three sons…

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WHO DID YOU THINK I WAS REFERRING TOO???

Just Kidding

my kids

Oh yeah there is one feisty sister too, but thats for another story!

 

 

A day in the Face of Leukemia.

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10 pm. Finally there is peace and quiet. I am alone with my thoughts. (not great company at times) I am…..exhausted. The children are all nestled in for the night, leaving me alone to rest, think, plan, and prepare.  Ok also to drink a nice cold beer…

These children, these genetic markers, fruit of my loins, incredible individuals who are searching, striving to understand what exactly is happening to their mom, taking my every moment with inquisitive thinking, questioning, testing my very patience. It is easy to forget they are not at a level to fully comprehend exactly what is going on with their mother. As each day unfolds and my fervor reaches pitch, they are unwitting victims to my own personal demise. A tossed bit of clothing here, an untended animal there, a room in disarray, teeth forgotten and hair occasionally not washed during the cleansing process. All lead me to instant eruption at times.

As my mind continually works at an ever rapidly processing pace, my inner ability to control or grasp a solid foundation of patience seems to crumble. It is not as though these little cherubs have truly faltered in any way, but more as though their little mistakes are magnified by worrisome frustration on my part.

A day in the life of the husband supporting a cancer patient.

Every morning I awake exhausted! My back aches beyond belief although I am beginning to feel this is some form of sympathy pain helping me relate to suffering my wife may be feeling. Breakfast is some delicious Javita coffee and a small bowl of oatmeal. Thankfully most mornings, the horses are already fed. Two of our “borders” in particular have become my barn angels. (Lisa and Olivia) Saving me from this chore as lately I just can’t seem to function with any repetitive, normalcy as the sun arises. After staggering around like a lost puppy looking for its master, I can usually get dressed before our children awaken wanting, no needing my utmost attention. During this time my mind is already checking off a multitude of things that may or may not need accomplishing before I abandon ship, heading off to be with my wife in the hospital.

After a short morning briefing the kids have their chore lists lined out, some laundry is done, dishes, washed, bathrooms cleaned, dogs taken care of and out the door I go to work a few horses that need to be on a daily routine. After completing this chore, its back into the house, showered, clean clothes, check in on the kids progress with their chores, hugs all around, a list of objectives to the oldest who is now watching siblings until my return and then off to Vallejo to be with my wife.

Easy enough, yes?

Walking through the door of room 5020 after saying hello to many nurses who know me by name, I lay eyes upon her, and begin feeling guilty. I still cannot understand why this is happening to her. This beautiful, vibrant, glowing woman, who by all accounts has never done a horrible thing to any ONE person in her entire life. It just doesn’t make sense to me. Why isn’t it me? Why hasn’t this awful disease happened to me? It would make more sense, I havent always been the nicest of people, I didn’t always care about others, their needs, their troubles, or problems. In my youth I was a very self-centered individual, who didn’t always treat people with the respect they deserved. But then I suppose life isn’t about who deserves what, as we see on a daily basis in the news, but for myself it just doesn’t make sense why this woman, this person who saved me from myself, this angel who puts everyone and everything ahead of herself, why it has to be her.

She is happy to see me! Like a prisoner is happy to see a loved one during their monthly visit. Trapped in a 15×20 room, with crappy food and lines pumping chemicals into you from all directions, one could understand the importance of familiar human contact. She proclaims her affection and declares how much she misses me, it makes my heart sink, yet fills me with joy at the same time. Sinking because I feel her lonely pain; surrounded by many but alone none the less. Yet to have someone who needs you, who loves you so much that after all this time together can honestly say they have missed you. Well it is powerful.  I watch couples these days fight over the stupidest things. Complaining in front of everyone, tearing down their marriage on a stage for all to see and it makes me sad. These people don’t realize the gift given by proclaiming their love for one another or what blessings are right in front of them,  focussing instead on the possibility that some grass may greener on the other side. Marriage is work, it takes hard work at times, but there is an old saying; you reap what you sow. I try daily to plant and fertilize my marriage and I believe it shows. It shows when I walk in the room and my wife beams at me with that million dollar smile. It shows when she grabs my hand, squeezing tightly and says; don’t leave me. It shows when she tells me she cant wait to be home so she can feel the security that comes with sleeping alongside her husband. It shows when I leave and all the way to the car I feel like part of me has been left inside that fifth floor room.

Jacy has cancer. I know she is winning this battle, but every time I say it, every time I write about it, it chokes me up. Jacy has cancer. My throat tightens. Jacy has cancer. My stomach feels sick. Jacy has cancer. My eyes become moist. Jacy has cancer. A dark cloud overhead looms like a storm waiting to throw lightening my direction. Jacy has cancer. I thank God the children don’t fully understand and only feel as though mommy is just on vacation in the hospital. Jacy has cancer, Jacy will always have cancer, Jacy has cancer.

Coming home, I am met by the many blessings of being surrounded by those who care. Nice notes, cards, letters of hope and understanding, dinners dropped at our door, the barn taken care of again and a multitude of additional support. But just as Jacy wishes nothing more than to escape her sterile cell, pulling needles from her veins to resume a normal life, I wish for her to be home, covered by the safety of these four walls, never having to travel this journey ever again.

Tomorrow she does comes home. The first few days are going to be rough as sickness, fatigue and living immunocompromised will be scary. But she will be home. In three more weeks she gets to do it all over again, returning to hospital, becoming reattached to chemicals that will save her life. Its a small price to pay to beat this evil demon, but then that’s easy for me to say as I am not the one fighting to survive. Or maybe its easy for me to say because it’s the only way I know how to deal. Placing things in categories and checking off  lists, one box at a time. The main thing is she is coming home.

So as I reach the end of another long day, I just want to say; Thank you to everyone, all of you, the kind words, the hugs that mean so much ( I love hugs, it’s the dad in me) , the smiles and great conversation. This is a fight, a fight we are going to win, no one fights alone and all of you have proven that to be true. Jacy is definitely not fighting alone because of all of you and standing by her side as her husband has been my absolute privilege.

Thank you for allowing me to make that happen..

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Random thoughts on life and Leukemia

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Last night while gazing upon the stars at 1 am after our 5th medical response in a row my brain began reflecting upon life, its crazy highs and sock you in the gut lows. In a matter of 40 minutes myself and our crew had lent assistance to a wide generational swath of our local society.

From devastating self-destruction both mentally and through chemical intervention to an actual emergency need in conjunction with a health care system abused by those neither willing nor able to understand its legal ramifications, the resources lost, nor the world that actually doesn’t revolve around them personally. A true sampling of consensus within a short period of time.

Becoming judgmental is an easy undertaking, fighting the urge to prejudge individuals upon first encounter is hard. Being a fireman the communities trust is put in our hands to always do the right thing. See people for who they are not what they have become. We are allowed glimpses of people’s lives that would otherwise go unnoticed. That is a large responsibility. Some days it weighs heavier than others on my heart, as my eyes witness these revolving cross sections of our society I go home upset or unhappy with what I have seen. Thus the judgmental aspect forms and memories that cannot be erased etch themselves into my psyche permanently  like a scar for all to see, left for me to pick at from time to time for no other reason than because it exists.

Staring into the nights sky, pondering what it all means, fogging up my brain. Reliving experiences from my life, candid moments, snap shots and like a Grisham novel this story is all sewn together with a fabric of revelation. Every moment finding a place as to why. Why it happened, when it happened and that it happened to me. There is a meaning and the meaning determines not just who I am but WHAT I am or have become. The people in my life I hurt, loved, helped, shared experiences with and what I learned from each and every individual who has crossed my path, set eyes upon my craggy face.

Shaking my head as if my brain was an etch a sketch hoping to erase an unfinished drawing, I can’t lose this feeling that all is not enough.  There is more life to be lived,  we are trapped in a stereotype of how life should be lived and for the most part succeed out of learned habit. But what if there was more? We have one life to live, we are not guaranteed any days here on this earth, trust me I have held the hands of many who were cheated, watching those last moments fade away in their eyes, lives unfulfilled, potential disappeared, erased forever.

Yet the world still turns, it feels no repercussion from human losses. Sun rise, sun set, society still moves, people still awaken, babies are born, buildings erected, mountains moved and society trudges on. Eventually who you are or were, is destined to become a faint memory or forgotten. It is life and life goes on.

I live a life of fear. Fear that I will never be good enough, fear that my children may perish before me, to be forgotten before they had a chance to become something, anything that leaves a mark no matter how small upon this world.  Fear that my wife may lose this battle with Leukemia at some point, leaving sadness and despair to rage within our family. Fear that I will perish before I find what this longing is deep within my heart that whispers; no screams at me there is something more. A mark, a substantial mark that I am supposed to leave upon this earth. Complete narcissistic view I know, yet it lingers deep within my soul. Maybe I am already leaving that mark and just don’t see my hand to spite my face? Fear that she (my wife) will know the pain of losing me, carrying an ache, sorrow and agony with her for the rest of her days.  Fear.

So I stare up at the stars and I wonder why? Why do I feel this way? Why cant I be happy with the here and now. Why I worry about how much time I have left or lack there of? I wonder how I can be better, a better father, husband and friend, a better co-worker, I wonder why?

Remember those days when you felt as though you had the world by the balls? There was nothing to stand in your way, no mountain you couldn’t climb, no one was going to say no to you! Do you remember? I do.

If you don’t understand the feeling I am referring too, just look at your child. Not your self-absorbed teen ager; your child. 1-9 years of age. Before society, television and friends ruin their ability to think on their own, be creative beyond our walled off perceptions. Give a child an adult sized problem, one requiring and answer and you will see imagination, inspiration, out of the box thinking and a confidence just waiting to be tapped. But as they grow older that ability goes away through structure, through habits neither right or wrong learned from observing ones elders. That feeling you had as a kid of being able to daydream all your problems away. To look deep into a problem and come up with the craziest most unorthodox suggestion known to man. To be confident.

That is the way I feel about Leukemia in my life. I don’t have Leukemia, but when my wife suffers, I suffer, when she hears news both good or bad, my emotions grow raw with glee or anger. I refuse to hear the word no. There has to be a yes to this struggle. I refuse to believe that my wife wont beat this disease. I refuse to listen to statistics and the medical dribble that often accompanies those numbers. And to date she is winning, we can see the finish line and victory looks great!

I feel as though my wife has the world by the balls! That she has another opportunity, showing the world she is unbreakable. That feeling has inspired me, left me in awe of her positive attitude, her out of the box thinking. She unknowingly has allowed me to reconnect with my inner child. There are no problems that cannot be tackled without imagination. She has left me finding the positive, loving all who surround me, laughing just a little bit harder, saying thank you a whole lot more and remembering that life is a gift to be cherished. I kiss her on the head every night while she sleeps, the smell of her skin soothing my soul. She has and is all I will ever need.

And so I am left staring at the stars, at one in the morning, wondering if there is or could there ever be, more………

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The Face of Leukemia- Just look at me, really its ok.

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Bald is beautiful

We’re all born bald, baby. – Telly Savalas

I collect hats. It’s what you do when you’re bald– James Taylor

It’s a great event to get outside and enjoy nature. I find it very exciting no matter how many times I see bald eagles –Karen Armstrong

What’s so brave about being bald? I’ve not fought for my country or found the cure for cancer I’ve just gone out without my hat on! -Gail Porter

You know it is interesting to me this stereotype associated with being bald. If you’re a man, it’s obviously genetic. Poor you, trudging through life with the same cranial cul-de-sac formed upon you as your father and his father before him. Unless of course you are a skinny, emaciated man then you must obviously be dying from some rare form of cancer. Or you just happen to be Billy Corgan jr. or Michael Stipe then ROCK ON DUDE!!! BALD ROCKS YEAH!

But what if you are a woman? Sinead O’Connors’ shiny domeness was by choice, a political statement against a traditional view of women. (well-played I might add)  But what if you don’t have her “balls”, what if you are brought screaming and kicking into baldness? Seriously think about this, in our society a woman unfortunately is judged the moment she walks into a room. Not for her sunny personality or Mensa card-carrying IQ. Nope, she is judged for her looks. Make-up, clothing, body weight, eyes, breasts and of course her hair. That is right, men will either ogle a woman within the first 30 seconds, ponder ogling her over the next 30 minutes or write her off. In the mean time women within the room will smile to your face and talk shit the rest of the evening. Sorry ladies its true, I have witnessed more than my fair share of character assassinations based on any one of the above criteria not being met to perfection on more than one occasion.

People get real comfortable with their features. Nobody gets comfortable with their hair. Hair trauma. It’s the universal thing-Jamie lee Curtis

So imagine, carrying this social pressure your entire life only to wake up one day without one of these aforementioned 6 major sight line musts for survival. What would you do? How would you behave? Would you curl up into a ball and cry or say fuck it and march boldly into the world claiming my hair will not define me!

Jacy lost all her hair on or around the first week of December. It has gone from sadness to a fun playful experience then one of empowerment! She has come to terms with this loss, worn a few wigs to help with a social awkwardness associated with a woman not 1474617_10153673039070221_12575420_nhaving hair, and in the end decided that 9 times out of 10 bald is beautiful.

Now while none of us can say with certainty what we would or would not do as it has not happened to us personally, I am proud of my wife for taking this strong-willed, brave stance. She does indeed have a perfectly shaped head and I think she is hot, hOT, HOT bald! Really, like she could never have hair on her head again and it would be ok with me! The woman is drop dead gorgeous! Throw in her stunning smile, caring heart and amazing personality, well ladies and gentlemen we have the trifecta of baldness!

But let me say this before I drone on too much about the woman I love and her shiny new dome. When we are out in public.

I see you.

I see when you stare at her as though it is wrong for her to be bald.

I see you when you look behind her and sigh as though you just cant relate. It’s ok, we understand if you cannot, but please don’t be fake.

While eating in a restaurant I see you staring, with your smart ass smirks, elbows flying into each others ribs while walking by outside. Moron it’s a window, if you can see us I can see you!

My ears may be 47 years old but your mumbles are not quiet enough. She hasn’t lost her breasts and even if she had you shouldnt be staring trying to figure it out so don’t look, she isn’t skin and bones so quit guessing her weight, and yes she lost ALL her hair, so stop wondering about places you cannot see and how much wax is being saved.

If you are going to stare don’t look ashamed when I make eye contact with you, walk up and ask questions, we are always open to discuss Leukemia and its effects upon our lives.

When you do have something to say, dont automatically behave as thought this is her last day on earth. The news media has ruined the public in regards to behavior when confronted with a bald woman. Smile say hello and ask away with glee! We are happy to be here and so you should be as well. Who knows the bald woman you talk with may have alopecia, thusly not really needing you to pray for them, unless you feel that will raise hair follicles from the dead?

If you have had a couple of drinks, your inhibition is lowered and you feel as though it is the perfect time to act like an ass with rude or inappropriate comments about this beautiful human being or any like her that may be in my presence, understand this, I WILL  make it the very worst night of your life. I promise..

When my wife takes her wig off in the middle of a store and it shocks you, just chuckle. It is funny, we laugh about it all the time and will laugh with you I promise! But if you can’t chuckle politely than at least close your mouth, that looks funnier than her bald head and we would hate for you to feel bad about yourself.

Remember, people going through chemotherapy are no different from you and me. Most of them have an incredible sense of humor, some have survived the very worst of treatment, others are still dealing with an inner loss while a few are looking at just making it a few extra days.  These people, these priceless examples of survival and strength, still need to laugh, love, talk, and feel. They still need to be accepted as the very same human beings they were before cancer. They know they are not the same inside and nothing will ever change that, but what they don’t need is to be reminded through ignorance, insensitivity and callousness.

Look into the face of cancer, tell me what you see.

I see LOVE…

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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. Today

 

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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!photo 3

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.photo 1

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!

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The Face of Leukemia (December 11, 2013)

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And so another aspect of this journey begins, a long and winding road filled with new highs and lows. The first hurdle has been crossed. The hospital is temporarily behind us as we will head back towards it in a month. Now begins a fight of great proportions.  Battling her compromised immune system.

4,500-10,000 white blood cells per micro-liter (mcL).

That is what we are hoping to achieve over the next week.  It doesn’t sound like much but in the grand scheme of things it’s the difference between life and death, staying home and heading back to the hospital. Walking then running, being surrounded by family and friends ar remaining in isolation.

Jacy’s white blood cell count was obliterated, dropped to zero by chemotherapy. This was of course designed as such to decimate the mutated cancerous “blasts” of immature cells invading her system, slowly eliminating her ability to fight infection, damaging other cells and choking her system with further useless cells.

Before she was able to come home her white cell count needed to rise above 800 and for days we would get excited as it rose to 600 then dropped to nothing with an onset of fever and night sweats.  Jacy’s platelet count would drop meaning her red cells were disappearing and her body was having trouble converting or carrying oxygen within her system.  Chemotherapy as I have said before destroys all cells.  You must kill them all so new ones can grow and flourish.  Or as the doctor put it, be brought as close to death as one can get before being allowed to live. So everyday would start out with a new blood transfusion, platelets and a lot of rest.

Along with all this cellular bombardment comes the neupogen shots. These shots are started after white blood cells slowly start production. What is neupogen?

Filgrastim- (Neupogen) is a granulocyte colony-stimulating factor (G-CSF) analog used to stimulate the proliferation and differentiation of granulocytes.[1] It is produced by recombinant DNA technology. The gene for human granulocyte colony-stimulating factor is inserted into the genetic material of Escherichia coli. The G-CSF then produced by E. coli is different from G-CSF naturally made in humans.
Filgrastim is marketed under several brand names, including Neupogen (Amgen), Imumax (Abbott Laboratories), Grafeel (Dr. Reddy’s Laboratories), Neukine (Intas Biopharmaceuticals), Emgrast (Emcure Pharmaceuticals), Religrast (Reliance Life Sciences), Zarzio (Sandoz), Nufil (Biocon) and others.
Apricus Biosciences is currently developing and testing a product under the brand name Nupen which can deliver filgrastim through the skin to improve post-chemotherapy recovery of neutrophil counts.

Ok so that was the technical doctor jargon, a pharmacists evening read. The down and dirty is Neupogen jump starts your system, telling it to make white blood cells and make them now!!

Neupogen is given through subcutaneous shots, started in the hospital and once we achieved a white cell bench mark the responsibility has been passed to me for in home treatment.  For all the greatness that is Neupogen there are also a few side effects for Jacy to deal with and they are;

The most commonly observed adverse effect is mild-to-moderate bone pain after repeated administration and local skin reactions at the site of injection.[3] Other observed adverse effects include serious allergic reactions (including a rash over the whole body, shortness of breath, wheezing, dizziness, swelling around the mouth or eyes, fast pulse, and sweating), ruptured spleen (sometimes resulting in death), alveolar hemorrhage, acute respiratory distress syndrome, and hemoptysis.[3] Severe sickle cell crises, in some cases resulting in death, have been associated with the use of filgrastim in patients with sickle cell disorders.[4]

The bone pain is killing her! It hurts to lay down, it hurts to stand up, she explained it to me as such, “my bones feel like they are exploding”. Can you imagine feeling as though your bones were exploding? I can’t.

So we are finally home and the last 48 hours have been an adjustment. Jacy is still exhausted, but very, very happy to be in her home. She is sleeping a lot (which is good), her bones are exploding inside, fatigue comes from walking downstairs (although we did journey outside yesterday which was awesome). The bed is soaked from night sweats and she awakes at 3 am unable to return in slumber. Jacy is also coming to terms that her life in the forseeable future will not be the same. This is going to be the hardest for her. Not being able to ride her horses or walk outside to play with the dogs is bringing much strain to the newest face of Leukemia. The thought of not being able to teach in her classroom this year is devastating. But she will prevail.  She is an incredibly strong woman who will triumph over this bastard known as Leukemia.

Today I held her as she cried over a current life lost, the realization of a unkown future, and the feeling of utter helplessness. I have always considered myself a strong person, but until you have faced a battle of this magnitude, become a true foundation for the person you love. You realize everything you have done in the past pales in comparison. Then you cry, not in front of her, but alone, so that foundation remains steadfast. My tears of sadness shedding her pain not mine. Throwing those feelings away, never to be seen or felt again, because we can only live for the positive.

Remission is a word the both of us are longing to hear. A word associated with freedom from the grip cancer/Leukemia has upon a soul.  We will walk every step together towards Remission, holding hands, moving slowly until we arrive.

Still kicking cancers ass, one cell at a time.

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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 (December 2, 2013)

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Another couple of days spent sitting patiently watching her sleep. For some this could become tiresome or even boring, but not for me. Time trudges on, as the thought of her waking to speak with me, even for just a little while weighs heavy with anticipation!  A second of lucidity, a moment, a glance, the chance to press her cheek against mine long enough to feel close again.

Through all of this, I am reminded that as her husband it’s my job to care for this woman.  It is an honor to ensure she has all she needs and it’s my privilege to do so. But none of that would be as easy as it sounds if it weren’t for all the wonderful people who continue to support our family back home. To continually be humbled by the kindness, care, love and empathy shown to us by our friends, co-workers, acquaintances and strangers is overwhelming to say the least. But I am and I thank you all..

Saturday while staring at the east Kaiser wall an epiphany overcame me! So after a little one on one discussion, today with Jacy’s help the two of us acted upon that revelation.

This morning my wife woke up, shuffled her way into a shower, did her hair along with a little make-up. Now this of course took all the energy saved up from a solid nights rest that one participating in chemotherapy could muster, but that did not deter her from participating in this master scheme. A phone call, some texting, our kids taken to school without the slightest knowledge (because loose lips sink ships), and I stealthily rolled into the parking lot of Dixon Montessori Charter School at 0800.

At 0815 I cleared the threshold of Ms. Jacy’s classroom with nothing more than a smile, a cell phone and one iPad mini in hand.  The students were gathered together and a simple question and answer period began. You see Ms. Jacy (as most already know from reading my blog) was hauled off to the hospital right after returning home for her lunch break on the Wednesday before the Thanksgiving holiday. Although her students knew what was happening through reports on Thursday and Friday, they had not seen or spoken with the teacher they have all grown to love since.

That was about to change

Jacy’s students know me either as Mr. Jacy or Firefighter James, Ms. Jacy’s husband. So not a lot of time was wasted with useless questioning about my presence. The kids were excited to see me and to hear the latest news, especially in person. But when I held up the iPad and explained my plan the place went nuts!

Now it took me a few tries as I am not the most advanced person immersed in the world of technology. But for the rest of my life I will never forget the sounds of joy that came from each and every student when I turned the iPad around and there was Jacy’s smiling face looking back upon these students. They cheered and clapped and screamed HELLO! A few “bomb-diggities” were tossed about freely! It was fantastic.  She could see all of them and they could see her. I stood as still as I could holding the iPad up so she could take in the room and they could feel as though she was right there with all of them.  This woman truly loves these kids, all of them and they love her! She has spoken of them everyday since being incarcerated in the Kaiser hospital system.  She told them all about her stay, what was happening with her and how much she missed them! It was grand.

When we were finished,  looking down and saying goodbye into the iPad, she beamed at me with a look of happiness. The look on her face warmed my heart, but being the ever gruff man I am supposed to be I choked back a bit of mist in my eye, told her I would see her in a couple of hours and hit the end button.  Walking out of the classroom I knew Jacy had just received a good old-fashioned jolt of uplifting spirit! Something we all need from time to time, but more so for her right now.  Looking back, pretty sure some skipping was done on the way back to the car. Maybe even a selfie high-five?

This week is going to be a long one. There are more complications like the persistent headache that never goes away, continued fatigue and weakness, there are also some sporadic nosebleeds which have us worried just a bit.  She can’t bleed as there is no way for her blood to effectively clot, so she has been receiving blood and platelet transfusions.  Friday is D-Day and it cant come soon enough. It’s when we find out whether the first round of chemo did the trick! There is a long road ahead for us and every time we meet the doctor I feel as though it is preparation for the road to get longer. But never the less we will travel this road and hopefully meet some really wonderful people along the way. Hopefully we can spread the word about Leukemia and the effects it has on its victims, their families and friends.

The face of leukemia spares no one.  It belongs to your mother, your father, brother, sister, uncle, aunt, friend, acquaintance, and stranger.  The face of Leukemia can attach itself to any and every person in the human race and it does not discriminate. The face of leukemia cares not about your age because, old face, young face, the face of an infant it still survives. The face of leukemia doesn’t care about your  financial status, whether you vacation in the Hampton’s or live in a cardboard box under a bridge.  The face of leukemia is driven by this disease and the victims it inhabits therefore the face of leukemia is and always will be you.

Look in the mirror and ask yourself, what would I do if I had cancer? Who would I turn too. What questions would I ask? How would I react? Would I be ready to take cancer on and kick its ass without wavering?

I never asked myself those questions before now. But I have, and I am going to do everything in my power to make this a success for the woman I love. I am also going to tell everyone I can about leukemia, it effects, its signs and symptoms.  Then with a little luck, the power of positive thinking, prayer and the amazing skills associated with the many medical professionals we have encountered up to this point.

“The face of leukemia” will have a happy ending!

Because I love her face, and leukemia can’t have it anymore……

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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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