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 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 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

What does the face of Leukemia look like?

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

But I ask you?

Does this look like the face of Leukemia?

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Because it is……

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

Here is her story..

Will you come with me to my doctor appointment?

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

This time was different.

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

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

She listened.

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

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

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

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

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

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

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

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

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

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

Are you ok? I asked

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

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

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

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

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

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

Leukemia

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

Wikipedia

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

We wouldn’t have to wait long…