Leukemia’s house of horrors!

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Phase two of AML treatment. The beginning of ongoing chemotherapy or Consolidation Therapy (CT) as it is known.

So what does that mean? Quite simply it means that Jacy’s immune system has bounced back to epic proportions. But because the original treatment was a bombardment of all aspects of AML she was exposed to many different drugs that all had different jobs.  Thier goal was to kill everything, both good and bad! The nuclear bomb of cancer treatment! The primary drugs classes for this procedure fell upon Alkylating Agents and Antimetabolites.

Alkylating Agents: 

Alkylating agents directly damage DNA to prevent the cancer cell from reproducing. As a class of drugs, these agents are not phase-specific; in other words, they work in all phases of the cell cycle. Alkylating agents are used to treat many different cancers, including leukemia, lymphoma, Hodgkin disease, multiple myeloma, and sarcoma, as well as cancers of the lung, breast, and ovary.

Because these drugs damage DNA, they can cause long-term damage to the bone marrow. In rare cases, this can eventually lead to acute leukemia. The risk of leukemia from alkylating agents is “dose-dependent,” meaning that the risk is small with lower doses, but goes up as the total amount of the drug used gets higher. The risk of leukemia after getting alkylating agents is highest about 5 to 10 years after treatment.

Antimetabolites:

Antimetabolites are a class of drugs that interfere with DNA and RNA growth by substituting for the normal building blocks of RNA and DNA. These agents damage cells during the S phase. They are commonly used to treat leukemias, cancers of the breast, ovary, and the intestinal tract, as well as other types of cancer.

So as you can see these are some pretty harsh buggers and can make a person very sick while performing their duties. The problem is even though they kill everything and Jacy’s counts have rebounded with astounding veracity there still could be stragglers. Evil doers hiding, lining her sacred DNA, waiting to join up forming an alliance, then pouncing on her fresh new unsuspecting immune system!.

Because of these sneaky little bastards we are in Consolidation Therapy. So what is Consolidation therapy(CT) ? Well I am glad you asked, Consolidation therapy is:

Treatment that is given after cancer has disappeared following the initial therapy. Consolidation therapy (CT) is used to kill any cancer cells that may be left in the body. It may include radiation therapy, a stem cell transplant, or treatment with drugs that kill cancer cells. Also called intensification therapy and postremission therapy.

So as you can see Consolidation therapy (CT) is very important. It is the clean up crew of cancer treatment. The crew that cleans up the stadium after a ball game. The squad that ensures a scene is all clear after a major crime. The Firemen that perform salvage and overhaul after a fire. The-oh well you get the point.

Jacy’s CT consists of Cytarabine. Now one may think WHOOO HOOO, only one drug instead of 4 or 5! But let me tell you this one is just as evil as the rest. You see when taking Cytarabine you must first be medicated with pain and anti-nausea medications! Because if you aren’t, hello toilet! Watch me steer the porcelain bus! Pray to the Sloan valve gods! Kiss the tile floor!  To make matters even worse some patients will develop a fever, body rashes, red eyes, and of course exhaustion.

During treatment your doctor will test your blood on a regular basis. Not just to see if Cytarabine is wiping out any stragglers but checking your kidney and liver functions ensuring it’s not killing more than it should.

But hey whats a little vomit, itchy skin, red eyes, exhaustion  and possible kidney damage when it means you will live! Right! Am I right?images-19

Luckily enough Jacy only had a few of the symptoms and is doing remarkably well! She is going to beat cancer, we are witnessing it first hand. She is going to become stronger and live a long and happy life.

So how do they administer the CT treatment? I am so glad you have inquired!

It is done through a port placed just under your skin. Since she has to under go three-week long treatments over the next three months in the hospital, instead of placing a Picc-line (acronym for Peripherally Inserted Central Catheter) into her arm every time she comes into the hospital an out-patient surgical procedure is performed to place a small port (PowerPort) just under the skin for easy access to a vein for administering drugs. (see picture)port.illustration220px-Portkatheter_Röntgen

On Monday we arrived at the hospital at 7am for admission. Jacy’s surgery was scheduled for 11:30 and by 1:00 she was wandering back out into the lobby. Procedure finished, right side of her chest numb, black and blue and swollen. She was supposed to start chemotherapy at 3pm but by 5pm we still had no room available as the hospital was full.

Around 7:30pm a room finally opened up, we got settled and lucky for us two of Jacy’s favorite nurses where on and had been assigned to her for the evening. Watching her start the pain medications and anti-nausea drugs, we knew it was going to be a long night.  Jacy felt I should go home to be with our children, and like a good husband I did as I was told; but only because I knew she was in great hands. Kissing her good night, looking into her gleaming eyes, little did I know the hell she would go through not more than three hours later.

0800- Jacy calls me gravely voiced and sounding weak; asking if she was ok; she says no. You see the PowerPort site was so swollen and inflamed no one could make contact with the palpation points to locate the insertion site. They grabbed it manipulated it, poked at it trying to insert the PowerLoc infusion device and nothing. Now imagine 12 hours earlier someone cut open your chest in two different places, inserted a device through one opening just under the skin then fed a line down into a vein at the other insertion point, then sewed it all up and sent you on your way. Now pain meds have now worn off, it hurts like hell and people are grabbing it, pulling on it, doing everything they can to stick a needle inside of this bruised swollen section of skin! Not maliciously mind you but trying their very hardest to perform this manuever quickly because underneath this swollen, inflamed area and little plastic device lays a 146 pound woman screaming and crying in pain! Proclaiming to all that will listen this pain is worse than childbirth! (that is saying something)

Both of Jacy’s nurses were crying too as they both love my wife and the thought of her hurting was crushing them inside. One nurse refused a doctors suggestion of going straight into another vein to start the procedure because she knew Cytarabine had a high probability of collapsing the vein at insertion point. They were wonderful advocates for my wife. After four failed attempts over a few hour period, additional pain medications and a lot of prayers, one of the nurses asked Jacy if she thought she could bear one more attempt. Through gritted teeth, screams of pain and sobbing tears from all involved they got it first stick. Chemotherapy started.

The nurses all met with management to implement some changes in regards to the insertion of the PowerPort device. The Powerport device is usually inserted a few days prior to the patient receiving treatment. This allows the insertion site to recover, swelling to diminish and a healing process to develop a good strong foothold before someone pokes it with a needle. Through the dissipation of swelling the palpation points are also easier to locate. It came about that all patients with same day insertion will have the adjoining PowerLoc insertion device put into place. No more torture sessions for patients to start Chemotherapy.

Today Jacy is doing much better. First round is going very well and she feels like a prisoner trapped in a room. At least this time she wont be trapped there for 21 days.  She comes home on Saturday night or Sunday morning. She will be confined to her room until her white cell counts rise to normal levels. She will be extremely immunocompromised. She will be extremely nauseous, she will inevitably become a tad bit cranky, but she will also be one step closer to beating this disease. One step closer to returning to a normal life, one step closer to seeing her students and one step closer to placing this chapter of her life in the books.

She will have kicked cancers ass.

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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 2014

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2014 Day 1……..

364 days to live.

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

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

A new year a new fear.

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

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

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

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

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

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

364 days… The story begins right now…

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The Face of Leukemia (December 18, 2013)

 

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SSSHHHHHHHH

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

But not tonight.

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

All Neurons firing properly.

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

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

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

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

I always knew being so wrong would feel so right!

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

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

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

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

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

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The Faces of Leukemia (December 14, 2013)

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My face….

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

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

It is the darkness.

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

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

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

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

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

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

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

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

 

The Faces of Leukemia (December 12, 2013)

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

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

Tears flowed like rain….

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

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

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

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

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

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

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

Just as I quietly wonder why?

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

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

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

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

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

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

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The Face of Leukemia (December 7, 2013)

 

IMG_2037Hair:

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

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

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

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

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

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

Falling out- Rogaine

Thinning- Hairclub for men/transplants/comb over

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

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

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

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

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

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

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

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

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

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Kicking Cancers Ass once cell at a time!

 

 

The Face of Leukemia (December 6, 2013)

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

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

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

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

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

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

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

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

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

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

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Listen up pumpkin!

My dearest daughter:

You are well spoken, smart and can talk the ear off a deaf priest. You are slowly entering the pre-teen years and this of course means my shot-gun is polished, oiled and ready for action! It also means boys, mean girls, real friends, fake friends and of course more boys! As your father (and a member of the opposite sex who was also young at one time) I am struggling to find helpful advice, nuggets of wisdom to answer the many questions about life as an adult bringing you forward into this world of contradictions safely.  Wisdom that will mold you, shape you, ultimately defining who you become as a woman.  One would think by using my personal experiences you might glean valuable information into the future but our world has changed drastically and yet oddly enough in some respects remains painfully the same.

Hypocrisy

In the world of today you my daughter will be expected to stand strong, ooze intelligence images-18and roar loudly until  heard! Of course this is only after a man has spoken because you are after all a woman with a small brain, with a brain a third the size of us men, its science. (sarcasm)

You will be expected to work twice as hard, put in long hours and strive to be the very best at what you do. Then watch as male counterparts do half the work with a quarter of the effort while enjoying the same benefits associated with higher pay and owning a penis.

images-21 images-19You must learn to dress appropriately for a job. Unfortunately in our world that means treading a fine line between appearing as a stiff uptight bitch or an easy boob busting slut. It doesn’t matter what you choose someone will find you to be one or the other and depending on your choice of careers that could be advantageous, purely disastrous or end with your own reality television show. Fingers crossed for that last one!!

Understand my daughter that sexual harassment training has been developed for your protection. Thousands of hours (and lawsuits) have helped define the workplace for the modern woman! Yes thats right men did that through idiotic blunder and sexual abuse! You are welcome! Now you must sit through countless hours of training, helping you to understand the protection afforded you from yourself, from others, from a boss,  a secretary, heck in some states even your dog.  You will have the security of knowing sexual harassment does not go both ways, even though the two-way street of male harassment by a female co-worker is discussed during class. You have nothing to worry about because no self-respecting man will ever stand up and say he was sexually harassed by another woman. In the mans world that’s known as moving up the ladder.

In this modern liberated society, where are all human beings are supposed be on equal plains, you must remember your place my dear! It doesn’t matter that you hold a full-time job, or are a CEO, my daughter when you get home after a long day you must ensure household bathrooms are scrubbed, dishes done, laundry finished and dinner placed on the table by the time your “man” gets home.  Why? Because that’s what society has learned from every advertising agency across this country. Every television sitcom since beerbefore Leave it Beaver!  Just turn on the TV and notice who the advertising is geared towards.  Hint: It isn’t men, domestic partners, children oh no! It’s all geared towards women still running the household and slaving over every aspect of their families life! But of course its easy to see why, because while watching these advertisements women are either married to the stupidest man in the world, are struggling single mothers or are surrounded by little genius children who dare not lift a finger out of fear Harvard will call cancelling their tuition. Wait no that is real life, so forget that, you are screwed.

Your love life can no longer revolve around finding a partner, falling in love and living happily ever after! Todays woman should date as many men as they want, date them all at the same time (they do on the bachelorette) play mind games with them as though you are on survivor then cast them aside for fun! Hell it’s what men have done for years so good for you! Marriage is an oxymoron anyways! But be prepared, as with your male counterparts you will be labeled a variety of names and most of them posted to your Facebook page, or at least linked to it! No longer just fodder for someone’s amusement inside your inner circle, by the water cooler at the office or gossip within the grocery store or PTA meeting. Now there is a Facebook page dedicated to your demise. Don’t worry only 500 likes so far. If you are lucky it will hit a thousand before the day is out moving you up in social status! Good job Snooky!!!

Eat to stay healthy, or skinny, or skinny and healthy! You know what I mean, our society has plenty of chocolate covered everything to help you keep that unwanted weight off while pandering to your obvious weakness as a woman for sweets! So plunge into those chocolate fiber bars or 0 calorie yogurt cups that help with digestion.  Hey they are allimages-22 there to ensure you become much skinnier then you really need too, helping you fit into that size 0 dress. You know why? Society says so fat ass.  The modern-day, Abercrombie and Fitch social scale of lard goes something like this; Size 4 you are a pig! Size 5-blimp! Size 10-rehab for food addiction.  HEELLLLOOOOOO!!!! Size 0,1,2 or 3 and well its obvious you aren’t eating enough and in need of serious help you crazy bulimic! But shit its ok because you look FABULOUS!!!!! Remember Binge and Purge!!

AAhhhhh my little strudel, don’t get discouraged at least your man can eat what he wants when he wants and that should satisfy you emotionally.  Remember if a man looks a little overweight he is considered “slightly out of shape”.  If a man has a belly of any proportion images-23its obvious he is spoken for and well taken care of by some generously loving woman. If a man is sculpted with chiseled abs its quite obvious he is either gay,  bi-sexual or a slutty player in which case you should have no contact with this handsome prick what so ever. (Just ask your father)

Drink beer and belch with the boys, you will be forever known as a rude, classless hick. (Tomboy)  Drink wine and hang with the girls you are of taste and elegance ( Snobby Bitch). Drink hard liquor at the bar and you are a “Ball buster”! (Dyke) Don’t drink at all? (Square) In which case you might as well spray yourself with man repellant, cause you soda water sipper are probably a granny panty virgin. (not that there is anything wrong with that)

Speaking of underwear. Thongs are the greatest underwear ever invented! Just ask any guy they will tell you! What they wont say to your face is once a thong is spotted you are labeled, easy, a tramp and everyman is looking for that little Y at the top of you dress line or peeking out from the edge of your “skinny” jeans the moment you walk in the room and bend over.  Like a heard of wolves searching for a wounded rabbit your scent tracked and observed from the quiet corners, crowded tables and single seats lining a images-24room! In the mans world it is a rite of passing to be the first reporting a thong sighting! Yet hhmmm, you never seem to catch a woman drooling, slinking around behind men looking to see if they catch a glimpse of those Hanes briefs or boxers? That’s right the thought of a vagina cradled just so, far outweighs a mans premonition in regards to the banana hammock as Gods gift for all women to behold.   But don’t worry sexual harassment be damned at some point the truth about you both will come out! Can you say office Christmas party or coffee corner drivel?

Drive a Subaru, Miata or 4×4 truck and you are self-righteous, country hick or gay. Drive a mini van and you are a soccer mom, drive a high dollar foreign car and you are a mafia wife (well taken care of).  A man can drive what he wants (except the Subaru) and he is either thrifty, fun-loving, intelligent or a hunter. Sucks huh?

When you do decide to become a mom life gets better in the social world of today. The mini van is a must or else you wont fit in with the cool moms. (competitions to see who can haul the most kids to meets, games etc..)  If you and your husband work and raise kids your husband is a selfish bastard and you will always be seen as frustrated and incapable of handling all the challenges associated with basically being a married single mom.  If you put the children in day care you are heartless, uncaring and shouldn’t have brought children into this cold, hard world. But don’t worry, because your full-time working husband is still selfish and insensitive in regards to your emotional suffering.  If your husband stays home to raise the children and you return to a full-time position, well then society thinks your husband is a complete failure and shame on you for forcing him to stay home and take care of your kids! That’s right my dear it’s a lose, lose for everyone, especially the children.

I could go on an on but this is just a small sarcastic glimpse at what awaits you as an adult woman in today’s world.  So my advice to you is this.  Remember your dad is always here for you and will support you anyway I can, then tell the world to kiss your ass and do what you want to do! Live life the way you want to live it, heck that’s what I did and so far its working out just fine….

Seriously though stay away from the chiseled abs guy, he is only into himself and he is nothing but trouble plus I am not ready to turn a nickel in a state facility for hurting him badly.

Love,

Your DADUnknown-14

Brain Freeze

Well my darlings let me take a moment to apologize for my current lack of substance! You see there seems to be a wee bit of a problem with my writing style lately.  There is none! No style, no words, no wisdom, no funny stories, no nothing! Just me, sitting behind my desk, staring into my computer screen wondering, hoping, praying that something, anything will end up written on this blank page before me. This usually ends up with me daydreaming about chocolate instead.

It actually isn’t even centered around what I may or may not have to say. There are tons of ideas swirling around in my head like fresh spun cotton candy! My problem stems from being able to capture these little gems as they whiz by from one side of my brain to the other.  Just when I think I have one of those squirrely little buggers captured for exploitation, my brain just FREEZES! That’s right all active brain matter freezes leaving me with the look of a pale-faced fresh corpse at the county morgue.

It also appears that my ability to type has lost its “mojo”! For some reason I went from a self-taught keyboard wizard to johnny hunt and peck! My thumb is whacking the space bar at random and my left hand seems to be encroaching upon the right hands territory without permission! There is a full-scale war going on between the two of them within the boundaries of 78 little tiles of statehood.  The flashing position line on my screen has advanced and retreated more times than I care to count! And for whattosugrste thatg theredsi nope   hope form e anyymogre? SEE WHAT I HAVE TO DEAL WITH!

I can’t tell whether Alzheimer’s is taking hold or I am just losing it mentally from stress? What was I rambling about again? Oh yes, Jello in the cafeteria is really quite good if you get it just after it comes out of the cooler.

Dogs and cats will never get along, women will always wonder why men feel the need to fix everything and children no matter how hard we try can and will never allow you to get out of the house on time.  Wait… sorry, sorry, my bad, wrong storyline.

So as I was saying, my brain is fried, my ability to cope shattered and I promise, any day now between a cup of coffee and a fifth of whiskey more stories about life, love and the pursuit of happiness, I mean children will be forth coming.

Heavy sigh…

Betty….