The Face of Leukemia…. The call…

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The call came through, I stared as it rang, the glaring eyes of my wife looking back through a pixel image formed from technology. Only 90 minutes into my shift I was fairly certain this call would center around a current general lack of respect shown by our children as of late. Between Jake’s consistent arguing, instagramming, snapchattering, compulsive behavior, or Jessica’s continual chip on her shoulder aimed at the entire world, Parkers inability to rise above 4 years of age at times and Cody’s, well Cody being Cody, it was fairly obvious a parental conference to line up our offensive, gathering ammunition and supplies for after school encounters was on the horizon.

Yet when answering the phone there was not the snap of an edgy, irritated Cuban woman whom I have grown so fond of but instead all that could be heard was a whimper. A demure, silent, almost mouse like squeak from the other end of the line. I sat up from my chair quickly, startling my co-workers as I pronounced; Jacy whats wrong! Still just a whisper, almost unrecognizable in stillness. Again even more stern, my tone changing with the rapid fire of my heart rate: JACY HONEY WHAT IS WRONG? ARE YOU OK?

With the whisper of an angel, a serene, quiet message arrived within the confines of my almost deaf, aging ears.

Its gone….

Whats gone? What is gone? Who? Is your dad ok? Is my dad ok? Are there any animals missing? What is gone? I don’t understand!

It is gone, fumbles from her lips one more time. The sound of a cracked voice, a strained quivering lip, a sniffle as mucus forms to join a plunging tear.

Honey, she called, it is gone, the cancer, its gone!

Is this a joke? Wait how does she know, man I wish I had another cup of coffee this just isn’t making sense!

Then it hits me. Three days before we went in for what we prayed would be the final bone marrow draw to determine if Jacy was indeed cancer free or if we were headed to Stanford for more Chemotherapy and an eventual bone marrow transplant. In those three days, with all that had been transpiring around us, I callously had forgotten.

ITS GONE! ITS FREAKING GONE! THE CANCER IS GONE!!!

Slowly but surely, my voice raises, not able to contain my happiness a shout of joy can be heard throughout the firehouse as I turn to my crew, my brothers, the family I spend one-third of my life with, the same family that supported our family 100% over the last six months. It is gone I say, the cancer is GONE!!!! Everyone is excited, I am excited, my heart is pounding, I can’t catch my breath, It is gone…

I tell my wife I love her, we both cry. A feeling of weight lifts from my shoulders, I want nothing more than to run away from work, go hug my wife and spend the day with her, talking about something we havent talked about in six long months.

The future.

My wife, my friend, Jacy Mirelle Franceschi was given a challenge six long months ago. The challenge was to beat Cancer. In that time she accepted, rejected and accepted that very challenge several times over. I knew my wife had it in her, she is the strongest, most stubborn woman I have ever met! I prayed a lot in the beginning, not for me, but strength for her. I coined a phrase and we adopted that phrase. Kicking cancers ass one cell at a time! A dear family friend formed an Army, and with it Jacys Army came to life, bringing support and love, along with a town that surrounded us. We (Jacy and I) never have done anything special, we both did not feel we deserved this attention but it didn’t matter, one by one they all came to our aid, joining Jacys army, supporting this cause and it worked! We did it, we ALL did it! My wife kicked cancers ass one cell at a time!

The cancer is gone. How we both longed to hear those words.

Yes, AML can return, Yes we will be ever vigilant for the rest of our lives, one wrong sniffle, a feeling of being run down, a blood draw or marrow test will never be missed. But today, moving forward, the woman I love is cancer free!

Feeling like Rocky Balboa after a fight, fist raised in the air, screaming for Adrian, but he just cant get to her. That is the way I felt at work when I got the call. The battle was over, the victor stood tall, but I just couldn’t get to my love to tell her how I felt, to have her look into my eyes and reconfirmed it to be true. Oh well it appears I just may have the rest of my life to do just that.

The cancers gone, the cancer is gone.

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To my family, friends and co-workers, to the citizens of Dixon, to the followers of my blog and to everyone who held a kind word, said a prayer, shook my hand, hugged me, told me all would be ok. To Jacys Army, the meal train participants, the fundraisers, to all the wonderful cancer survivors I have spoken with, thank you. Thank you all from the bottom of my heart. It is because of all of you that we survived this incredible ordeal. I love you all… 

Does the sun set on Leukemia?

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“To run and fly, jump towards the sky, to trip and fall where no one see’s at all, to sit and wait a heart truly aches, to smile and cheer dread no longer feared, mired not in contempt an energy much better spent, to enjoy every moment with my wife, now wouldn’t that be a splendid life…”

The sun has risen and set upon 180 days, 4,320 hours, 259,200 minutes, 15,552,000 seconds. Time that for most was nothing more than a passing blip in an otherwise hectic day. Coming events, moments sectored into fragments, blocks, bullet points upon a schedule where children are dropped at school, animals are fed, meetings are kept, practices attended, showers to be had and pillows to be slept upon.

The sun rose and the sun set. Under a bright fall moon one woman gazed upon the stars to ask why? To cry tears of fear, sadness and remorse. A woman pleaded with her God for an answer but was left momentarily in silence. A woman stared into a nights sky, thinking about childhood, college, adulthood and the love for a life lived. Hoping beyond hope all this would be was another bump in the road and she would live to see her adult children stand on a balcony under a full moon and not ask God why, but say thanks for all he has provided.

180 days. A man knelt in an arena and cried. Not for himself for you see he has walked the road of sadness many, many times in his life. But for his wife. This man who lives to ease his families burdens and carry their pain could do nothing to make this next challenge in life any easier. He could not reach inside his wife and yank out the evil that surged within, instead he would need to remain patient. To willingly wait, and know when to speak and when to say silent. To understand he could not fix everything and that was ok. As those 180 days passed by slowly without rest or sleep, he would come to value the meaning of just being there by her side and knowing that was enough. He learned to cradle and quietly without judgment let the water flow upon his chest through sobbing breaths. He would become stronger with each bought, each treatment and the ensuing moral disintegration of spirit. This man, he also prayed to stand hand in hand with his wife while watching their adult children thank the lord for all he has provided.

The sun rises and the sun sets. How many more days remain? An answer none of us know, will know or should know. Life is a gift of love. It started with our parents, two people who at one time loved each other so much we came to fruition. Some parents still love each other that much, others sadly do not, but either way we are here, living breathing examples of a look, a word, a time, a kiss an embrace.  Carrying on a legacy that is ours to write, shape, mold into a future for ourselves and quite possibly through the absolute love of another, our children.

Jacy is alive, Leukemia has not taken her from this earth. 180 days of literal HELL she has survived thus far. We are told she holds the perfect genetic markers for success. In two more weeks another bone marrow draw will provide proof in the proverbial pudding. Two years cancer free and our celebrations will become larger with each passing moment in time.

She worries about damage done, all she has lost both mentally and physically, she worries she may never feel whole again. To those worries I say:

“Gentlemen, we can rebuild her. We have the technology. We have the capability to build the world’s first bionic Leukemia survivor. Jacy Franceschi will be that woman. Better than she was before. Better, stronger, faster.” images

Sorry, late 70’s humor..

Two years, a little by little everyday until this all becomes a story of survival, a distant memory, an experience to draw upon during life’s trials and tribulations. Sure it will be difficult, yes it will become frustrating and even embarrassing at times, but in the end, my wife will be whole.  My life will be whole again, and how I long for that day.

Thank you again to all who have supported us, never left our sides as the going continued to get rough.  This is the end, I feel it in my bones. In two weeks celebrations of joy will ring true and none of it could have been done without all of you! You are all my Rock, helping hold me up so I may continue to be hers.  I love you all, you know who you are!

The power of thought and prayer is amazing! God bless you all…

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Betty (James) has entered a new venture to help make ends meet during this trying time. I am proud to say I am now a distributor for Javita Weight Loss Coffee products. Javita Green Tea has kept me running strong through every hospital trip, late night Emergency Room run and long days handling the ranch, kids and sporting activities alone! I can’t say enough about this great product.

So if you are looking to lose a few pounds by simply drinking coffee, or need the mental stimulation and health benefits of pure unrefined green tea. Then please take a moment and explore http://www.buyjavitacoffee.com/javabetty and order some today. You wont be sorry. I promise, plus every purchase made helps keep my wife home a little longer for recovery.

Bless you all,

Betty

The Face of Leukemia

 

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The face of Leukemia is slowly starting to smile again. Her radiance glowing from under the shroud of another long stay. Its been another 8 long grueling days of high fevers, infections, blood work with crazy numbers, CT scans, swollen lymph nodes and skin so irritated that touching it or an accidental rub or scratch would leave strange marks.

This week Jacy endured another week long headache from hell, nausea, and a colossal loss of appetite. She lost more weight, became so fatigued that walking from the bed to the bathroom left her exhausted. She hallucinated under the spell of multiple pain medications and tried her best not to throw up when anyone was around.  The face of Leukemia has been drug through the trenches, fought the war, wiped the sweat from her brow then laid still wondering if there was more.  and there was…

Under the covers on top of the bed, warm or cold, drenched in sweat or so hot and dry the desert looks cool.  All this woman can think of is coming home to see her babies, her children, to be normal, a mom like any other.  The face of Leukemia is yearning to tell her kids to clean up their rooms, help them with homework, watch them ride their horses or simply walk by an open door at night, only to peek in and watch them sleeping peacefully.

No longer do the simple things in life feel mundane.  Nothing is taken for granted; for you see when the better part of 5 months has left you strapped to a hospital bed going through the metabolic changes her body has endured, something so simple as making school lunches for the ones you love feels like striking gold.  When you have nothing but time, and are trapped in a room with no hopes of escape the world begins to look different and so by her own admission, it has changed.

As for me. I can’t wait until she comes home. My children are the most awesome individuals I have ever had the pleasure of knowing.  They screw up and make mistakes like any other children but they are mine.  But no matter how hard I try a child needs it mom.  There are only so many things I can do or say to make-believe everything is all right. But children are not stupid, they see the distress upon my face, the furrow in my brow, they feel when my temper has shortened and patience worn thin.  They adjust, they try, but stability still needs to reign for normalcy to occur.

It has been a good long stretch since I have seen her million dollar smile; understandably so, yet it is what I long for. To see her strong, to see her laugh, to see her ride a horse again, to see her walk a set of stairs without becoming winded and then saddened for the memory of what she used to be. To see her triumph.

As for me? As for me, I have decided my problems shouldnt matter. My complaints are small, may pains irrelevant, my loss of sleep inconsequential, my stress load manageable. For as for me, I don’t have cancer, I have a healthy body, therefore I have no complaints.

Today she smiled, I surprised her while dropping a patient off at the ER. Popping in for a just a minute! Walking down the corridor I came to her room, slowly turned the handle and walked in, she was propped up, texting. I said in an altered deep voice: Excuse me mam we are going to need to palpate your abdominal area, can you please undress for me. With a startle she jumped, seeing it was me, she smiled. A big giant smile! The most beautiful smile I had seen in a very long time. It made my day, it made her day as she was happy and surprised to see me.  It was only for a few minutes as my Engine company needed to go, but she smiled. It was radiant, it was warm, she was beautiful.

The face of Leukemia is smiling…

Which must mean Cancer is losing….

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http://www.myjavita.com/javabetty

 

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!

 

 

Keep Calm, its only been five months..

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(I apologize for not having written in a while, and though this isn’t the best, it hopefully will at least allow you all to know where I am at mentally)

Over the last 5 months plenty of time has passed for me to ponder the ramifications associated with cancer.

Endless days and even longer nights leaving me sleepless, cold, worried, angry, happy, sad, confused, and exhausted.  Staring outwards into a twinkling nights sky, or straight down at my feet, lost, strained, asking God why.  Ramifications indeed..

I have held a little boy who doesn’t understand why his mom needs to be gone all the time.  One day at home then vanished into thin air, only to reappear 7-14 days later looking gaunt, pale and exhausted.  This recurring abnormality in domestic motherhood  just doesn’t compute in a 9 year olds brain.  He needs his dad alright but there is nothing like the hug his mom can bestow upon him and the smile that shines on his face afterwards.

I have driven to games, practices, and rodeos alone. Elicited the help of many wonderful caring friends who dropped what they were doing without so much as a whimper to ensure my family was cared for in my absence. Helped (not well, but hey who said I was smart) with homework, read books and had books read to me, washed laundry, cleaned dishes, scrubbed floors, toilets, windows and walls. Watered flowers, cared for dogs, horses, goats and chickens.  Folded laundry until 2 in the morning to ensure everyone had the right clothes for school, baseball, softball, hunting, etc…. And yes in a very strange bedraggled way I have cherished every minute.

Don’t get me wrong I performed all of those tasks prior to Jacy becoming sick as well, but they were shared tasks, and as with all relationships, some portions were performed by a certain partner because that partner excelled in one area over the other. Laundry has always been kind of my thing,(especially the folding portion) where as homework has always been Jacy’s (college grad/teacher and all).

Cancer has brought my children closer to me, helped me understand a little more of who they are as people.  From seeing them handle this situation with their mother, to the inspiring abilities shown by the ones who have stepped up their games around the house during this time.  Their interaction with the hoards of caring people stopping by our house or cornering them in a park, they have all made me proud. It has been a very hard, long frustrating road, but that road has also been filled with love, understanding, caring and commitment.

Cancer also filled my heart with fear.  For every great moment I shared with our children, there was fear that Jacy would never see those moments.  Fear our children would become used to their mom not being around, fear that she would not win this fight and the children would be left devastated, emotionless voids.  Never remembering their childhood has one filled with great adventures, laughter, family and fun, but of the time their mother contracted Leukemia and perished. No child should watch their mother die. My fear is entrenched in losing faith. Something I have always had, a security which has kept me strong my entire life.  Fear I will lose that feeling of always “knowing” what to do, how to behave, which direction to travel. Its faith which has kept me solid in those beliefs, it is my faith in God which has laid a foundation for me to build upon. Yet what if my faith eludes me? What then? More fear.

Up days and down days, days filled with forgetfulness, days filled with unexplainable irritability, days filled with an abundance of love, and days filled with dizziness, nausea and sleep.  These are the emotional stages Jacy travels through.  Highest of highs and lowest of lows.  It’s a hard ride for me at times and it’s always an even harder ride for her. Yet each day is one day closer to the treatments being over, her body trying to heal itself and our lives returning to some form of normalcy.

She came home from her last treatment on Sunday.  It was a day of joy. Only two more weeks of blood transfusions and testing, cumulating into a bone marrow draw somewhere during the third or fourth week.  Many days ahead filled with more fears, watching her body decline time after time until her blood cells, both white and red begin producing normally on their own.  Then waiting..

Fingers crossed, all goes well and Jacy will be able to finally claim to be cancer free! Over the next couple of years she will do her best to lead a relaxed, non stressed lifestyle and we will continue to pray Leukemia never returns.

5 months, five long and lonely months.  I miss my friend, my spouse, the woman I love.  To have her home and whole will indeed be a blessing.  For five months I have slept alone many nights and like the true idiot I am, I never once slept in the middle of the bed! Always on my little 6 inch wide portion, leaving her side (which is 3/4’s the mattress) undisturbed. Out of habit or respect, I do not know, but wow, what an idiot! I really blew an opportunity to really stretch out and sleep like a king! It’s no wonder I never got any sleep! Oh well I digress….

A light is truly at the end of the tunnel, we can see it. Keep a prayer for us please, prayer is a powerful thing and I believe it helps keep my faith alive and her healing powers strong.

More to come, God bless you all…

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Nurse Betty….

20 things Nurse Betty will probably never hear from a Chemotherapy patient.

  1. Does this hospital gown make me look fat?
  2. Man I could eat a horse!
  3. Honey could you stop by the store to purchase me some conditioner?
  4. Now that was an awesome workout!!
  5. Zofran is for pussies!
  6. MMMMMMM-M hospital food again! Hell yeah!!!
  7. This hospital bed is great! I slept all night, like a rock!
  8. Go outside? Hell no I got all I need right here!
  9. Man I look great naked!
  10. I don’t like fresh fruit and vegetables anyways!
  11. Another line to put in nurse, the more the merrier!
  12. Whew! Cytarabine is such a rush!!!! Yah!
  13. I cannot wait for another bone marrow draw!
  14. Vomit-its what’s for dinner, and dessert and breakfast, and oh well you get the point..
  15. Will you please, take the needle out of my Power port and put it BACK in again? Please!
  16. I think you forgot to take my vitals.
  17. Can I please pee in the top hat at home! Please?
  18. I have no idea what my latest blood counts are?
  19. When I get outta here I’m going to Disneyland!!!!
  20. Man oh man I love that I haven’t pooped in three days!

If you have gone through, are going through or are in the midst of Chemotherapy then you know exactly what each and every one of those statements mean to you, personally.

My whole life I have always tried to find the humor in everything. I have too, it is my coping mechanism. I am the guy who can go a really, really long time being yelled at, put down, struggling under an emotional burden and laughter always gets me through, allowing me the opportunity to push my feelings down! Farther and farther, deeper and deeper, because hey, they are my feelings after all and expressing them is just a waste of time right?

So with laughter, nervous, caddy, giggling, straining laughter these feelings of helplessness and grief, struggle and heartache, get pushed farther and farther into a never-ending emotional caldron! hee, nervous hee, ha twitchy ha…..

Don’t worry, once its full down there, and it heats up a bit I’ll let it all out! I promise, scouts honor! I mean all it takes is a certain word or situation and them Whammy! My emotional toil will spill forth like Vesuvius blowing its lid, burning, maiming, damning all around me into an eternity of fear.

Scared you didn’t I?

Seriously, we are very blessed for this sense of humor we have retained throughout this whole event. I am calling it an event because in the grand scheme of things that is all this is-an event. We will look back upon it someday and laugh, probably cry a whole bunch too, but I am sticking with laughter!

My wandering point with all this drivel. (besides hopefully making you smile a bit) Wake up everyday and be thankful. Your troubles are not so big. Money comes and money goes, jobs are a source of income, not a source of heartache and pain. Your children should bring joy to your life, no matter how troublesome they may become. Love them, hold them and try to understand what they may be going through, then show them the right way to deal with life’s little inconsistencies.  Tell people you love, how you feel, tell people who inspire you, bring meaning to your life just what an important role they play in your personal growth and sanity.  Everyday is a gift for you to open, unwrap, be thankful for this gift and enjoy.  Remember it is never to late.

Even when Jacy and I don’t see eye to eye, even when my selfishness helps me to relocate a foot into my mouth. I love her. She is mine and I am hers.  No amount of stress related to this family centered catastrophe will change that! Is it fair? No. Do I accept it? Yes. I hate this disease for what it has done to her, not me, but her.  No person deserves to go through what she is enduring.

When she lies beside me (hospital or home) I don’t see Jacy the chemotherapy patient, I see Jacy, my wife, my partner, my love. When she places her head onto my shoulder and closes her eyes, there is no cancer, there is no gloom and doom, there is only us, our relationship, the warmth radiating from within our friendship, there is peace. All the reasons we married are pushed to the surface for us to embrace, hold in front of our faces, relishing, reminding us there is no mountain we cannot climb, no obstacle we cannot conquer, together. Staring at the ceiling, gently stroking the soft baldness that is her scalp, I am at ease, she is at ease and she sleeps. It’s not much, but its mine, all mine, our little moments together.

It is love….

 

 

 

 

The gift…

Life as of late is holding me down. A weight upon my chest, a hand-held defiantly to my face, paranoia, fear, sadness, exhaustion all playing upon my emotions. Some days are harder than others, most days tolerable, my fortitude is strong, a resolve steadfast, I awake each morning and start all over again.

My wife is worried that my plate is to full, she see’s it written across my face. The new lines forming upon my brow, a redness to my cheeks, a constant itch that travels across my head, face, chest, neck and shoulder when stress becomes intolerable.

Conversations change, today is a “good” day while 12 hours later, no conversation at all, left staring, wondering what I would do if she didn’t come out of the ER alive? Laughter becomes fun, dark humor is everywhere, trying, straining, yearning to pretend this is not happening. A ceiling is my new meditation portal, alone in bed, lying dead straight in the middle, wondering, worrying. Past times would find me reveling in a moment like this, now ashamed to be taking up a portion that is her place.

Why? Why does life go like this for some, yet flows so effortlessly for others? Never was I blessed with any one talent that allowed me the luxury of standing apart from a crowd. My entire life has been marginalized, left in the “average” column.  Average size, average intelligence, average GPA, average looking, average job performance, average minor successes.

Yet for some reason I feel as though God has blessed me with a gift. A gift others would most likely refuse, kick to the curb, drop and run away screaming. I am willing to admit, when bestowed upon me it was not an easy one to accept. But being a man of faith, I knew no matter how hard I fought, in the end it was mine. And so, it has come to pass that with this gift, I have earned a few extra lines upon my face, some unwanted grey hairs, an inability to sleep some nights along with an overall fear of what may lie around the very next corner.

This gift it seems also brought traits I never knew existed within me. Care, compassion, love, patience and understanding. Not just for myself, but for all forms of life. Imagine a gift so powerful it opens your eyes wider than ever before, it ignites your senses to an almost raw irritating state yet you are thankful for the feeling. Imagine being able to stand, while all crumbles around you, seeing an alternative, an answer, a future destination. Imagine knowing when the day is through, no matter what has been thrown emotionally towards you, deep inside you will awaken the next morning to do it all over again! That is what this gift has become and I wish I knew how to share, but I just can’t.

I carry the souls, the faces, the lives of all who have perished before me. Those souls have built me into a stronger man over the years, stronger than I ever was or could have been in my youth. From every response, medical aid, vehicle accident or fire that have gone badly awry; to the losses of those closest around me, ones that I love more than most could imagine. I carry those days, those moments, those instances of life disappearing before us in my head, in my heart, a scar upon my soul. Some moments come with pictures that can never be erased, tales that can never be told, slivers in time trapped for eternity within my dome. Family members never knowing, never seeing, never having to see the imminent demise of those so truly loved. No horrid pictures permanently scarring their psyche, no electrifying screams, no tantric goodbyes. Over 19 years I have done my very best to absorb, deflect, and care about those who have lost someone. Carrying that burden has been my privilege. God allowed me this wonderful gift.

And so now the gift hits home. What better human being to handle this very situation than myself.  I have been trained well, prepared for all contingencies through mentorship and experience.

Yes I am tired, yes my worrisome self is working overtime, standing on high alert, yes my heart stops, skips a beat every time she proclaims not feeling well or becomes clammy and pale.  But my gift churns onward, allowing me an ability to focus on the good things and recognize in the end all will be ok. Teaching me sometimes one needn’t seek all the answers, but instead too know deep down in their heart things will be fine.  My gift tells me there are those in much worse shape than we, and to be thankful for all we have before us. Constantly reminding me how precious life truly is and to awaken every morning with a smile, because you can.

So as my wife worries about me, as my friends ponder over my ability to handle this very situation, as our own parents fret over the unknown, do not worry, like a ball player riding the pine all season long, all I ask is this, put me in coach, give me a chance, this gift could possibly be the one thing I am actually good at! Becoming the Abbott to her Costello, Jerry Lewis to her Dean Martin, the Sigfried to her Roy, and then when my time comes, my moment here on earth is finished,  I will finally be a success and wont have lived an uncaring, callous, self-centered, marginalized, average life…

Now I think its time for some sleep.

Goodnight Jacy I love you and thank God for you everyday… Relax, all will be just fine..

 

 

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Leukemia-Blood

blood

Blood is a bodily fluid in animals that delivers necessary substances such as nutrients and oxygen to the cells and transports metabolic waste products away from those same cells.

In vertebrates, it is composed of blood cells suspended in blood plasma. Plasma, which constitutes 55% of blood fluid, is mostly water (92% by volume),[1] and contains dissipated proteins, glucose, mineral ions, hormones, carbon dioxide (plasma being the main medium for excretory product transportation), and blood cells themselves. Albumin is the main protein in plasma, and it functions to regulate the colloidal osmotic pressure of blood. The blood cells are mainly red blood cells (also called RBCs or erythrocytes) and white blood cells, including leukocytes and platelets. The most abundant cells in vertebrate blood are red blood cells. These contain hemoglobin, an iron-containing protein, which facilitates transportation of oxygen by reversibly binding to this respiratory gas and greatly increasing its solubility in blood. In contrast, carbon dioxide is almost entirely transported extracellularly dissolved in plasma as bicarbonate ion.

Vertebrate blood is bright red when its hemoglobin is oxygenated. Some animals, such as crustaceans and mollusks, use hemocyanin to carry oxygen, instead of hemoglobin. Insects and some mollusks use a fluid called hemolymph instead of blood, the difference being that hemolymph is not contained in a closed circulatory system. In most insects, this “blood” does not contain oxygen-carrying molecules such as hemoglobin because their bodies are small enough for their tracheal system to suffice for supplying oxygen.

Jawed vertebrates have an adaptive immune system, based largely on white blood cells. White blood cells help to resist infections and parasites. Platelets are important in the clotting of blood. Arthropods, using hemolymph, have hemocytes as part of their immune system.

Blood is circulated around the body through blood vessels by the pumping action of the heart. In animals with lungs, arterial blood carries oxygen from inhaled air to the tissues of the body, and venous blood carries carbon dioxide, a waste product of metabolism produced by cells, from the tissues to the lungs to be exhaled.

Medical terms related to blood often begin with hemo- or hemato- (also spelled haemo- and haemato-) from the Greek word αἷμα (haima) for “blood”. In terms of anatomy and histology, blood is considered a specialized form of connective tissue, given its origin in the bones and the presence of potential molecular fibers in the form of fibrinogen.

Wikipedia

I know that was a hell of an introduction to today’s blog, but it was really important for me to reaffirm or institute a knowledge base for you to draw upon as I ramble on about our recent tribulations in regards to chemotherapy and its nasty after effects.

Leaving the hospital after 7 days of chemotherapy, Jacy feels good, not great but good.  Our hopes remain high and we press onward as no other options but to do so exist.  Two days out of the hospital and allergic reaction occurs after receiving a shot of Neupogen.

To the ER we head and a long night of tracing down this problem while treating associated symptoms ensues.

14 hours later we are home.

Jacy continues into the week still feeling well, but weaker by the day. Chemotherapy is working as designed, coursing through her body, and wreaking havoc as cell counts drop lower and lower.  Now here is where things get tricky. You see Jacy understands what it feels like to have an abnormally low cell count having experienced this phenomenon within the safe confines of a hospital. Because of this her doctor has her entrusted to recognize this feeling, make the appropriate phone calls and return to the local infusion center for a much needed blood transfusion, boosting cells back into her dying system.

Jacy instead decides to wait..

Why? Because she has an appointment for a blood draw later that day and she doesn’t want to inconvenience anyone. (Always the worrier) So we arrive at the designated time. One problem, she has become so cell depleted, I can barely get her out of the car into a hospital wheel chair. Wanting to take her straight to the ER (color is no good, breathing is shallow and she is exhausted from simple movements) I instead (per her request) head to the infusion center, as planned for her appointed blood draw.

Upon turning in our paperwork, a nurse appears from behind closed doors to grab multiple appointment slips from a basket and I quickly take this opportunity stop her, informing her of my wife’s worsening condition. Walking her over we find Jacy in her wheelchair, speaking repetitiously; I don’t feel well, help me I don’t feel well, something’s not right, something’s not right, I don’t feel well. The nurse takes one look at her and it’s off to the races.

Rapidly she is brought inside, her port tapped, blood drawn, and we are treated like gold as it quickly becomes obvious she is in need of more blood. To the ER we go!

In the ER, we are welcomed once again by friendly faces, my fears are calmed, my heart rate drops and we begin another arduous journey of emergency care.  Thinking this will be no big deal, it is after all just a blood transfusion one more in a list covering nine such applications over the last 30 days, I get her settled, talk with the doctor about the plan, watch as they put the standard medications on board for the delivery of blood and make a quick exit to run home ( a mere 7 miles away) and put our children to bed.

No big deal right?-WRONG

The text comes one hour later; Oh God, I am covered from head to toe in hives, my eyes, ears, scalp, everything! I itch so badly! I’ve had an allergic reaction to the transfusion and they are determining what to do!

Are you freaking kidding me! A reaction to the Neupogen (could have killed her) and now a reaction to blood, the one substance she needs most to survive! What the holy hell? Heart racing I head back over to the ER and meet up with my swollen, covered in hives wife!

After a long consult, the addition of a steroid that made her feel as though electricity was being pumped into her private parts (yes the vagina) and a substantial reduction in flow rate, with a large dose of Benadryl, Jacy nods off to sleep receiving the blood she so desperately deserves.

16 hours later, feeling like a million bucks Jacy comes home….

5 days later..

Jacy begins to feel “funny”. Yep it seems as though her body has still not hit rock bottom! Neupogen everyday and her bones are just starting to ache, which is a good sign; it means cells are trying to grow! But she doesn’t feel good, so this time she calls ahead, makes the proper arrangements, we head to the ER with plenty of time before her body hits rock bottom. The hospital can’t order the blood until she is physically on the property. So the sooner we arrive the better.  Walking through the door I am beginning to feel as though we have never left.  This place, this wondrous place of miracles is starting to feel like Groundhog Day to me.

Once checked in we walk to our room, none of the regulars are around so far, but as always the RN’s are amazing.  Jacy is settled into her room, her port is tapped, a very nice conversation between the male RN and me ensues.  It feels like old hat, unfortunately as though we belong here, and sadly a feeling like this will be her way of life forever comes over me. A thought enters my head; how many nurses will we meet in our life from this point forward? Will they all be as wonderful as those blessing us now?

Blood is ordered. The syrupy, red mixture she needs to survive. We are grateful for all those who donate, we feel good about this round, as though we have a handle on this procedure. I am also counting infusions now. After 20 infusions she risks developing an abundance of iron in her blood stream, which would mean she would need to have blood taken out every few weeks for the rest of her life. Yep feeling as though things may get a tad rougher..

Kissing her on the head, it’s all standard fare now, she asks that I leave and spend time with the children, telling me she will call in a few hours after the transfusion.  Once again against my better judgment, I realize the kids do need me and recede to the parking lot to retrieve my truck.

One hour later, I receive this text; having another allergic reaction, Epinephrine and tons of Benadryl, they have stopped the transfusion, my heart is pounding! It’s not good, I am afraid they won’t be able to give me transfusions anymore!

Rushing back to the ER I find my wife, sad, down, beaten. She is terrified because the doctors don’t know what to do. The blood she was receiving is sent off for testing, the Epinephrine is coursing through her system elevating her resting heart rate to 120-140 and she still feels sick.  As time passes she becomes weaker and weaker.  Without blood she dies, with blood and another allergic reaction she risks her lungs shutting down and she dies, it’s a no win situation.

The RN gives her another dose of Benadryl; slowly she drifts off to sleep.  A consult with Oncology in the morning is all we know. Before Jacy fell asleep she proclaimed to be very hungry and as I kiss her forehead to say goodnight, she tells me I am not allowed back into the room unless I bring her food! Food with protein!

Arriving home alone once again, I lay in bed worried for my wife. She is pale, doesn’t feel good, cannot receive the fluids she so desperately needs and it scares me. I sleep on her side of the bed…

The next day I arrive with an egg & cheese muffin sandwich in my hand! She wolfs it down and sips the English tea I also procured.  Sitting on the bed she lays in my arms and cries. She is tired of fighting, feels like giving up and states: I don’t want to do this anymore. This of course does not sit well with me. Holding her I reassure her; this is just a bump in the road all will be ok in a matter of time.  My heart is breaking, I stay strong, showing no emotion, but I am dying inside! Before our pity party can grow the RN enters the room; a plan is in place, slow down the drip (from one hour to four), a new steroid is to be used and all should go swimmingly.

The steroid is introduced, along with a giant bolus of Benadryl.  Jacy once again slips off to sleep. I watch patiently as the blood ever so slowly makes its way into my wife’s chest. Once there, my observation skills increase! Breathing-ok, Color-ok, heart rate-ok, blood pressure-ok, hives-none! All is good.  After a half an hour, the nurse talks me into going home, promising me to call me should anything go wrong. Reluctantly I do so…

18 hours later, 2 pints of blood, some platelets and feeling like a million bucks, she comes home…

Don’t ever take for granted that red fluid coursing through your veins. Leukemia is a cancer of the blood and blood is life, without blood you cannot exist. Be thankful if you have never needed blood, even more thankful if you have received blood. If you are healthy, have the time, or the desire to help someone in need. Please go and donate blood. It’s saving my wife’s life, one transfusion at a time, and for that I am eternally grateful….

blood 2

 

Leukemia’s torn heart….

 

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This journey we are on has taken us many places, both in the physical sense and metaphorical. Today it seems as though a new issue is exploding inside this ever churning brain of mine, leaving me scrambling, and ducking for cover. No man ever wants this problem, nothing good can come from it.

It is the feeling of being torn between two loves.

My wife, this woman for whom my world revolves, a center to all my affection. She has unwittingly become 50% of who I am, what I have become and, ultimately what I will be remembered for after perishing, leaving this earth behind. When she is around I can’t get anything done for the overwhelming feeling of needing to be by her side. Now with Leukemia, that feeling has magnified and being by her side, caring for her is all-consuming, my hearts contentment.

Learning the Leukemia dance (two steps towards a hospital, one step towards our home) The leukemia dance is a funny little number. Slow and steady like an 80’s love song, crooning across a roller rink, grab your best girl and don’t fall down, couples only on the floor, couples ONLY on the floor please. Then broken and angry with failure forcing you to mosh into the pit of despair while Godsmack beats down upon you! When you least expect it you find yourself doing a happy dance, joyous news brings the B-52’s tapping at your door. But in the end all I hear anymore isn’t music to my ears, but the constant beat of a heart monitor telling me she is alive. The quiet sounds of her breathing while I stare, awake, not wanting to miss a moment, standing guard, like century, evil shall not pass.

Our children. They need me as well and even though they seem to be handling the last 50 days just fine, I know deep inside they must be worrying. None of them really know how to talk about what is happening with Leukemia, our family and the new dynamics, but this is what I have observed. The oldest is treating Leukemia with a bit of denial; as in “oh yeah mom came home from the hospital today it’s all good”.  Next in line the 13-year-old asks a myriad of questions in regards to moms health, how long it will take to get better, reassurances she will get better and what can he do to help! Our 9-year-old daughter has taken to reminding me to tell mom she loves her over and over and over and over.  The 8-year-old on the other hand is pretty much in a world of his own and thankfully doesn’t comprehend or wish to comprehend any of what is currently happening. Lego’s are king!

Either way they are four beings, four souls, four of the most important people in my world and instead of being able to give to them emotionally, unconditionally as a father, right now I am taking from them at every turn and corner throughout the day. They have all stepped up their game. Chores, school, packing lunches, cleaning the kitchen, doing laundry, helping with the ranch, it’s really quite nice seeing these little versions of ones self working hard together towards a common goal. Now don’t get me wrong it isn’t the Walton’s (you younger ones look that up! You might find an episode on TV land) going on over here by any means, they still fight like cats and dogs, which in brother and sister land is how it should be, but it is nice to see the effort non the less.

So how am I torn?

These are the two loves of my life. My wife and my children. I must give to my wife first and foremost, but the need to nurture my children is every bit as strong. It is a dilemma which has no answer. A challenge or conundrum if you will. This feeling of utter helplessness as a father of needing to be in two places at once. Forming the solid foundation for four while building upon a marital foundation of two.

In the end it will all be fine. We will arise from the proverbial ashes, stronger and better than ever. Our children will hopefully learn in a positive way how to handle family struggles while relying upon one another for support and strength. Our marriage (Jacy and I) will grow and develop an even stronger bond through our faith and love for one another.  These are all positive things! Maybe I should just quit worrying? I guess sometimes you need to be torn to learn how to mend? hmmm sounds like a future Words of Wisdom from Betty’s alter ego.  

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Leukemia an uneasy rider…

Unknown-2Grasping, clawing thin air, holding her chest she weaves back and forth, side to side. A look of terror covering her face, showing blaring signs of confusion, her eyes wildly searching the very corners of our room. My chest hurts, I can’t catch my breath, somethings wrong honey, something is really really wrong! Am I hot? Do I feel hot to you? James? James? James I can’t hold myself, where are you? Somethings wrong, somethings really wrong! My stomach hurts, my stomach hurts real bad, James? Somethings wrong (speech beginning to slur)

In fact something was wrong, very wrong. I was alongside of my wife as she jumped straight up from what seconds earlier had appeared to be a sound sleep. Starting a downward progression, a health scare that would for a few moments challenge my ability to cope, compensate and help this sweet woman through the opening moments of what would become a 12 hour medical journey.

Me: Babe I am right here, right next to you, what is wrong?

Jacy: I am hot, I don’t feel good, something is wrong (speech slurring), where are you?

Me: I told you I am right here, do you need me to call 911?

Jacy: No, somethings wrong, somethings really wrong, I don’t feel good, my heart is beating out of my chest and I can’t breath! Somethings wrong (repetitive answering)!

At this point Jacy began slurring her words even more! Her eyes rolled around within their orbits and she forced herself into a tripod position that was wobbly at best.  I began to panic! My head was spinning, what do I do, do I call 911, what is wrong with her, she isn’t speaking to me, holy shit is she dying! It felt like an eternity, sitting there staring as my wife’s body began shutting down, doing things I had never seen it do before. I wanted to open a window and scream for help! For some reason my phone wouldn’t bring up 911 and every time I tried my fingers fumbling from shaking, inadvertently locked the device, rendering it useless until I could hold one digit still long enough to manipulate the finger scanner. I by all accounts upon reflection was that guy! A swearing, stuttering completely useless basket case.

Then something happened. A recollection, a memory, a proverbial light bulb flashing over my head like a Las Vegas strip sign! And like the flip of a switch the realization struck me: I don’t need help! I am the help! Yep that’s right folks, through the heart pounding, fear laden panic of watching my woman disintegrate physically and mentally I recalled a somewhat important fact. I know what to do! I am trained to deal with this very situation! Holy shit! HELLOOOOOOOO MCFLY!!!

That is right, apparently when the patient is someone you love, that one person you have pledged your life too, the human being you swore in front of God to love till death do you part, you tend to forget important information like, well uh like you are a firefighter with 18 years experience as an EMT! You have evaluated, and helped prepare for transport more sick people than you care to remember! Triaged, treated and transported every type, diseased, ill, injured, trauma, heart attack, respiratory distressed, overdosed, ingested, kidney failure, cancer ridden, etc… human being on the planet! So why on earth are you dropping the ball on one of the most valuable patients ever to be in your presence?

And like that the light switch flipped! Questions changed, responses changed, and within a few quick seconds, just by shutting off my emotional side, I had determined my wife was either in the midst of a possible life altering allergic reaction to the Neupogen injection I had given her not more than 50 minutes earlier or she was mid TIA (Transient Ischemic Attack) Layman’s terms; a minor stroke! She met all the criteria for both! Confused speech, altered level of consciousness, rapid heart rate, pale, cool diaphoretic, loss of muscle function to a side of her face, blotchy redness on the chest and involuntary muscle movements. Yep mirroring symptoms to the point, one could have invariably irritated or influenced the other.

UnknownSo I did what any man in my position would do, could do, or hopefully would think to do. I threw her in our car and headed to the emergency room! Now hold on, before you put a hand over your mouth and yell at me through the computer screen: Why didn’t you call 911? Its simple math really. I live exactly 7 minutes from a level 2 Kaiser hospital. It took me under a minute to get her in the car. That is 8 minutes. It takes 1 minute to reach dispatch from my phone, another 30 seconds to dispatch our engine in combination with a responding ambulance for a ride out to my house that is at best 12-14 minutes.  After toning out the call it takes an average of 2-3 minutes for crews to look up the address and get out the door. That is a total of (rounding) 18 minutes to receive help. By the time they would have gotten to my house we were already in a room being treated. It was scary, it was risky, it may have been stupid on my part, and I would never under any circumstances pose that any one person take that risk upon themselves, but it was done, and we were in the ER, safe and sound!

Arriving at the hospital, she was wheeled into the waiting area where she promptly declared BATHROOM!!!!  Mario Andretti would have sure been proud at that way IUnknown-1 was moving when I passed that crowd (gratuitous Charlie Daniels plug). Sliding sideways into the first bathroom, Jacy began vomiting, and vomiting and crying. A very nice security guard came in and helped me take care of her, while the registering nurse took my word we were who we said we were and put us right into the system.  Within seconds we were relocated to the triage nurse who stared confused at my patient transfer rundown in regards to my wifes medical condition. Moving like a rabbit the triage nurse wheeled us into the ER and as we turned the corner it was obvious which room we  were destined as two nurses feverishly wiped everything down with disinfectant! (special germ precautions for Chemotherapy patients) Then as we drew closer my heart leapt with joy as I recognized the smiling friendly face of our RN (registered nurse). It was one of the moms from Jacys school. Jacy had taught her daughter and my wife was one of her favorite teachers. Truth be told her daughter is one of our favorite students! I say ours, because my wifes students are my students too. Over the years I have come to know most of them by name and when ever I see Jacy at work they all talk with me, give me high fives and generally bring out the dad in me! I am Mr. Jacy! They all make me smile, but some make me smile more than others and this little girl is one of them.

Things moved very rapidly, I helped where I could and stayed out-of-the-way when I needed too. Just as things began to slow down a bit another surprise walked through the door. One of our firefighters who works as an ER Tech was also on that night. It was fantastic to see his face, my fears were quickly calmed as now there were two people who knew us, knew my family and genuinely cared for my wife.

Thus began a long night at a Kaiser ER. Needles here, blood drawn there, chest x-rays, CAT-scans, blood pressure, oxygen, 3 I.V. bags of fluid, antibiotics, and the best damn treatment I have ever had at a hospital. I cannot emphasize enough how well we were treated! The on duty ER doc that night was funny, charming, with honest concern for our well-being. She was the kind of person you hope to meet someday outside of work to share a drink and a few laughs! I am forever in Kaisers debt.

12 hours later we walked out the back door. Ok I walked, Jacy shuffled. We slowly climbed back into our car, and drove carefully home. The final diagnosis? Undetermined, but it was narrowed down to either a minor TIA or an allergic reaction to the Neupogen.  A phone call later that evening from Jacy’s oncologist would confirm most likely the latter. Yep I still got it!

Returning to our house we walked upstairs, my goal was to tuck her into bed and watch her sleep for a while ensuring all was good. Apparently being up for 28 hours doesn’t agree with my aging body anymore because the next thing I know its 4 hours later and I am in bed looking at her sleeping peacefully. Getting up, I kiss her forehead, thank God for getting us through this day and say a little prayer for all who helped us the night before. Walking downstairs my mind cant help but ponder how many more times we will travel this road, how many more scares will we survive? How many more long sleepless nights will we endure? Then I realize, it doesn’t matter, because no matter how many more “times” there are, we will win in the end. Jacy continues to kick cancers ass and I will continue to do what I can to support that ass whooping!

Sleep or no sleep, fear of confidence, vomiting or solid good health, it really is as simple as that… There is no other option…

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