Tag: Leukemia

Coming to Terms…This ones for you Jim Wilson.

theycallmebetty11 Comments

“If I ever needed to know how he was doing, I would simply read his blog….”

So are the words of a man I hold in high regard.

To Jim, this one’s for you.

Coming to terms with a traumatic event in your life can at times become very difficult. You and you alone will ultimately decide how, where and when you face whatever collateral damage that event may have inflicted upon your mind, body and soul.

I do not believe there is any one answer. For those that believe there is a dedicated path to recovery, I have no words. That every human being is so cookie cutter perfect, a simple pathway of textbook answers by those in the know is exactly how each person will perfectly handle grief, suffering, stress, emptiness, loneness, mental isolation, adversity and a host of other emotions is absurd.

Now don’t get me wrong, the help afforded through networks of well-meaning individuals with countless hour of education is definitely needed, wanted and effectively utilized.

My problem is this; those preaching the loudest are not the ones in the know. They are not the ones who have suffered and been helped. They are not the ones with hundreds of hours of education within the process. To me, when I look around the ones preaching the loudest are those who are arrogant and the closest to you. With little regard to how you feel, or the knowledge you have obtained along the way, believing they know more about you under the guise of caring for you because they are close to you and you appear to be struggling. Yet their motive most times is very clear. They wish to be the ones to say at the end of the day, they were there, and it was because of them and them alone that you are making it. In the end it is about them and not you. Most don’t even know they are behaving in this irrational manor, a smaller handful do and enjoy it.

There is no substitute for experience and even though I am speaking for myself, I wish those experiences on no one but wear mine like a badge of honor. I have earned this shit! Good bad or otherwise, I have earned my way through surviving each and every single devastating thing I have witnessed or been party too these 53 years of life. The ones speaking the loudest have witnessed little in my opinion and although everyone’s tolerance or idea of what a tragedy may or may not be is differing, I am sure I will be chastised at some point for my view being wrong or delusional.

I don’t know why I felt the need to get that off my chest but I did. All part of the process I guess.

I digress; I said this one’s for you my friend so here we go.

I have not comes to terms..

I still haven’t comes to terms with the passing of my first wife Kim. She was an amazingly beautiful human being, the mother of my first two sons and quite simply the kindest person I ever met.

If she did something to upset you, the minute she knew there was nothing that would stop her from correcting that wrong. In ten years we fought once. Once and it lasted a whole 20 minutes or so. She gave me two of the greatest gifts I had ever received. One is currently a CHP officer and the other works construction hoping to one day be a fireman like his old man. She never saw them grow up, she never saw them off to school, helped with their classes, went to camp with them, or guided them into adulthood. She missed it all. All of it.

I know she is gone, I know she will never walk through the door again, I know this is part of life and I know I carried on the way she would have wanted me too. I wish I could say goodbye, but I never have been able too. My heart hurts when I think about her, she was taken way too soon. I would have given it all up, walked away, allowed her life to be with someone else, somewhere else if it meant she wouldn’t have been taken.

I had not dealt with a lot of death at that point in my life. It was strange to see her after she had passed. Serene, peacefully in eternal slumber. It always stuck with me, if I close my eyes I can see her now. My job had not jaded me yet, life hadn’t begun to punish me. Little did I know.

I am also incredibly thankful for our time together. She made me a better person, she built up my confidence, supported my decisions and always stood by my side through the consequences. And believe me there were many. To deal with the younger me, love me and stand by my side on a daily basis took a saint.

There is a picture of her on our wall. She will forever be 34. To be so lucky.

I have still not come to terms with the death of my father.

A man I revered early on in childhood, who through failure and disgust with what I can only assume was himself, became an angry, grumpy and at times violent man. As a young boy I looked up to him, idolized him, loved standing in his shadow and believe me when I say my dad cast a large shadow! I learned much from him. It is because of him I have always believed in doing what’s right, even when no one is looking. Speaking for those who cannot or do not have the power to speak regardless of the consequences and never faltering on a true friend. EVER!

It is also because of him that I have spent a lifetime struggling with an explosive temper. Fighting the urge to fight at the drop of a hat or hit my kids as a form of punishment! I wrestle with it daily, but I do it because it is what’s right. I hated him for the times he beat me, I despised him as a teenager for those years and knew I would eventually become bigger and stronger than he would ever become. I did eventually become bigger and stronger, it didn’t help.

As he grew older he became harder to be around. I became softer in my stance but the damage was done. Our years of butting heads made it where I had a hard time loving him, seeing him as anything but a bully. My parents moved onto my property so we could keep an eye on them as they aged. In my naïve thought process I thought it would bring us closer but it pushed us farther apart. Both of us stubborn, both set in our ways I found myself purposely avoiding him.

When he passed away in our driveway, all I wanted to do was turn back time and say I was sorry.

Sorry for being a troublesome child.

Sorry for fighting/rebelling against him all the time.

Sorry for never living up to his standard.

Sorry for not being the son I am sure he wanted as I was adopted.

Sorry for so many damn things I could write an entire book.

I carried, and still do; all the guilt.

I just needed to be eight again, when he was my dad. Really my dad! The man who held me, kissed me, hugged me, let me sit next to him during a Niner’s game. I will never truly know what happened or why. But that was all I needed and as I parent my kids feeling as though I am failing at every moment, I pray when I am gone, I did a good enough job and they won’t feel this way. It sucks…

I have not come to terms with my second wife’s death.

How do you say goodbye twice? How do you even fathom believing you can not only lose one wife but two! Seriously!! What the hell is wrong with life that this can happen again! How can two amazing women walk into my life, stay for a while and then be gone like the wind. Ten years the first time felt like a dream, this (16 years) felt like the blink of an eye. An alternate universe, a black whole.

Kim went fairly quickly; her heart failing, it was painful, scary but she only suffered for a short period of time. But Jacy, poor Jacy struggled and fought, and struggled some more. She lived with incredible pain every single day, while trying her very best to show a consistent positivity that one could only hope our society strives for, yet really; who deserves that much pain and struggle? Who?

Jacy was a people person and not one person I knew thought otherwise. She had the incredibly rare ability to make a friend from anyone. She could morph herself into any situation and always be loved by all. It was her gift. Anywhere anytime, it didn’t matter. The back of the school yard as a teacher or the far reaches of Haiti. People flocked to her, people loved her.

She willingly and gleefully raised, loved and cared for my first two sons, we added another son together and adopted our daughter. She always placed the kids first and did her best to keep them on their toes, created fun lasting moments in their lives. I still don’t understand how life can take away two moms from one set of boys and the only mother three of them ever knew. Leukemia is a bastard.

I am unable to clear my head from the vision of her taking her last breath. It is with me most days. I look at those I love and pray to never see them die the way I saw her pass away. When my children are sleeping, I stare at them to see that little movement. The rise and fall of the chest. I am permanently scarred. Always looking to see if you are alive. I have witnessed the passing of so many human beings, it wears on you over time. Death staring you in the face. It makes it hard to appreciate life sometimes. While others may hear a clock ticking in the background, I hear a life clock clacking loudly, harshly, reminding me it (death) can be at any moment.

I have not come to terms with my own mortality.             

Three important people in my life gone. People I never knew beyond the few seconds I attended to them in the course of my job, gone. Faces, feelings, the most awful things one could ever have seen done to the human body, emotional disconnect, doubt, all run through my thoughts every single day.

Spending my entire adult life hiding behind a wall of false security. Being a firefighter, we train, learn and work our best at protecting you while needing to feel invincible. It is the only way we could do our jobs. Nothing can touch you, nothing can hurt you, and your good deed bank is overflowing so how can anything bad ever happen to you?

Three gone and I feel wounded. Then I learn that I have an aortic aneurysm and a failing heart valve a mere 8 months after losing my wife. Where is the justice? Why do bad things keep happening? Is there any sunlight left in this world? Why does the darkness always fall upon me or the ones who surround me?

My oldest is a newly christened CHP officer. He has wanted this since he was 8 years old. I am beyond proud of this man for chasing his dreams. Success always follows hard work. Yet, I don’t sleep at night sometimes worrying about him, on his own, with back up 45 minutes away. Especially in today’s climate! He is a public servant, raised in a public service family. All people are to be treated with kindness and respect until proven otherwise. No one person is any better than the other. Yet all some see is the badge which incites hate. Never mind the person or the fact that even though you hate him for what he represents he will gladly protect you, while upholding the law. Praying daily I am the one carrying all the bad luck for the entire family. It all stops with me.

I have a girlfriend. She is amazing. But what is she in for by being with me? Is she destined to perish to soon as well? Will some other medical bullshit mow her down in the prime of life? Would she lead or live a better life by never being with me? Am I cursed? Will her family be cursing me if something does happen? How many people do you know who lost everything twice and are still sane? Still looking for the sunshine on daily basis? How many?

You know, funny tidbit, things come in threes! Are we truly fucked in the end?

Friends have come and many have gone over the last almost two years. Faces and attitudes changed. Some telling me what I should be doing and not supporting me when I didn’t agree. Others openly accepting changes in my life because they understood. Missing a few who kept quiet but just disappeared. Relearning people all over again.

Coming to terms means: To begin to or make an effort to understand, accept, and deal with a difficult or problematic person, thing or situation.

I don’t know if I will ever truly come to terms with some or any of what I have just described. But I do know this, because unlike many humans I have encountered. I know, like and love myself, regardless of any doubt, struggle or pain. I can look in the mirror and say yes; I would hang out with myself if we ever met.

In the end, there is this;

I will always, wake up each morning, put my feet on the floor and take one step forward. Life is so incredibly beautiful if you take a moment each day to look around. It is also too short to think otherwise. Move forward, every single day, breathe and know what will be, will be.

And this.

If you ever want to know how I am doing? Just read my blog.

Thank you for being you Jim Wilson..

A million no mores………

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Where are you?

I see you in the trees, I hear you in the wind. Your smiles a reflection of the sun, your tears an afterthought of rain. I smell you while passing a garden and feel you in the dirt upon my hands. I know you’re in my heart, my chest feels nothing but pain.

You belonged to no one, yet you were mine. I will always have been the lucky one.

Things have settled down, people have filtered away. My house is no longer filled with the sounds of an active family, but instead a quiet, sterile silence echoes from the walls.

I have a lot of time to think. No more oxygen machine, no more pills to be taken, no more round the clock care, sheets to be changed, special meals to be made, I.V.’s to exchange or breathing treatments to administer. No more last minute pain pushes or middle of the night Kaiser Pharmacy runs. No more doctors’ appointments or shuttling to and from her second home at her dads under the wonderful care of her S-MUM. No more……. Anything.

There is also no more middle of the night laughter as she owned being high as a kite! No more rambling conversations with me acting frustrated to get her goat then tell her I was listening all along. No more stories of childhood or the time she decided she wanted to be a firefighter, all having been recited a thousand times. No more theological discussions involving what some would consider the gospel truth, then mixed in with stories of what we both called historical biblical sleight of hand. No more listening painfully to The Real Housewives of any fucking stupid city as she played it purely for background noise to quell her ever increasing anxiety. No more walks together outside or watching as she bravely and oh so blindly used her will of steel to walk on her own. No more morning breakfasts where I tried so very hard to create something flavorful and delicious to make her smile, knowing that being stuck in bed while I ran a million chores made her sad. No more arguments about who wasn’t listening to who or her telling me to slow down because her brain didn’t process as fast as it used too. No more inadvertently hurting her feelings as I needed to treat certain situations in a clinical aspect to get her to comply then working towards forgiveness and a long awaited hug and kiss which she always made me earn and rightfully so. No more watching her snuggle her children or her dogs with glee! No more watching her find joy in the simplest of things, hear her recollect every amazing moment with each and every one of her children or fill those precious moments with every worry she had about their future. No more sage advice from a woman who pulled no punches while never saying she was sorry, but then fill your face with a million kisses instead knowing you’d probably already forgiven her. No more family holidays with her smile radiating across the room. She couldn’t see, but she could sense every single minute surrounded by those she loved and the joy upon her face was the stuff stories are made from. No more hearing her at 1 am downstairs, alone, singing or laughing or talking to her iPad as she recorded things for her children in the future. No more hearing her sob, alone downstairs at 1 in the morning as her brain helped her realize what was to be a certain fate. No more morning goodbyes or walking through the door hellos, followed by a joyous “I love you”. No more hidden cards telling me how much she loved me, no more painted art or crafty paintings! No more kissing her while she slept and adjusting the covers so she was warm. No more, no more, there are a million no mores.

Saturday was the start of something.

Seeing each and every life she ever touched, listening to all the stories and remembrances, being surrounded by that much love was an amazing experience. I know she was there, I hope she was happy, I am sure she spent time in her own way touching each and every one who walked through our gate. Jacy just had a way. I fell in love with her for many reasons, but one of them was because she just had a way. She drew you in like a moth to a flame, she held you close with her warmth, compassion and heart of gold. She only ever cared about you, never herself and that my friends is an amazing quality that is not seen all that often today. She was quite simply an angel.

I can remember dropping her off for choir practice and thinking as I drove away that church seemed a little brighter once she walked into the building. I loved listening to her sing in the choir too. She always glowed. She always said that we all find our way, it is what Go has planned for us. There is no roadmap, no directions, we simply need to trust in him and we all find our way.

After Saturday, seeing everyone and watching a day of remembrance unfold exactly the way she hoped it would, I knew in my heart we will also find our way.

It will be long and painful for all of us. There will be a million new experiences for us. We will make new memories and find our way while hopefully honoring the leader of our family with each and every step.

I will miss being able to report our successes and failures to her, hearing her laugh or wanting to give us a hug. But we will find our way.

The truth of it all is I don’t know how to be anyone but Mr. Jacy and I miss more than anything hearing her voice out loud. It’s in my head, it’s in soundbites and video, but I am selfish, it is not the same.

But I can hear it, and I hear her telling me to have faith, stay strong and find a way.

She told me once that she will be waiting for me with open arms on the other side, and though it will seem like an eternity for me, for her it will be but a joyous moment in time, for she had been with me all along, in my heart and in my soul.

I loved you Jacy Franceschi, I will always love you, I will always be grateful for every single moment we spent together and apart. When it was easy it was good, when it was hard it created what marriage is supposed to be and those memories will never fade. I loved you with everything I had and I can never repay you for what you brought to my life.

I miss you so bad, but I can truly say not only was I loved, but I was loved by an angel.

You were my everything…

8 Heads in a duffle bag..

theycallmebetty3 Comments

Although my fingers have been fairly quiet as of late my brain has not. There is this strange struggle that goes on inside my head on a daily basis. It is as though two entities are fighting for the right to think and during that struggle neither seem to be able to act accordingly.

For the most part I have spent this entire process of dealing with the arduous task of caring for a Leukemia survivor, GvHD patient with positivity and faith. Struggling with the highs and lows, while finding strength and solace in my abilities as a caregiver with an upbeat attitude has helped immensely. Jacy and I have been so blessed to meet many of the people we have spoken with through the long reaching tentacles of the internet. Knowing that simply by sharing the human condition you have helped another is humbling to say the least.

But what do you do when you’ve reached what feels like the end?

Now I know deep inside, and I mean right now really deep inside, I fully understand it is not the end, that I not only want, but need to continue being open and honest. But I am struggling. Badly. It is why the argument inside my head continues on, it is why no matter how hard I try my fingers just can’t seem to find the keyboard, creating words that are meaningful to others while allowing me an avenue to vent, love and share with solicitude.

Constantly I stare into the screen and wonder what it is that is hindering my thought process, why do I feel as though I am constantly drowning and the only relief on the horizon is a shadowed man throwing paper life preservers?

To say it’s all too much that life is more than a person can handle has and always will be a cop out to me. I have been to other parts of the world, stepping from within the spoiled confines this country and my own personal bubble for which I reside affords us all. Witnessing true abuse of the human condition, desperate pleas from those who reside in squalor, with no more than two pennies a pair of shorts and no food to their name. Governed by those who care not about their people’s physical health and financial wealth but furthering personal gain. So I know, there is more inside me, more to give to my family, my community, my friends and my life. I know because I have seen true struggle and what I am facing inside is a mere droplet inside a rain storm.

Yet, struggling I am.

I used to go to work and hide my pain. It is a great place to hide ones inner demons as any day surrounded by good, like-minded people can bring about a recharge of the inner soul. One purpose, one goal, be there for the community and its citizens, save a life, save property from the destruction of fire, or help someone simply change their smoke detector batteries. The privilege of caring for one’s community on a daily basis is amazing. Spending 48 hours winding through the autonomous machine of daily chores while finding comfort in the twisted humor of your co-workers is electric! Starting a new guy down the right path while helping to refresh the volumes of knowledge 23 years has stored inside your head brings renewed life.

Instead as of late I’m feeling like a cornered parole, unable to do anything correctly while nervously twitching at the thought of going back inside. Working for a city (management) that no longer appreciates the enormous amount of effort we place with so very little in return. Refusing to acknowledge our continued attempts to assist not only them but the public to the best of our abilities while suppressing our very innate need to always help. It is demoralizing to say the least when you feel a department many have worked so hard to bring to the forefront is slowly slipping backwards and there is nothing you can do but shake your head and watch.

Coming home has always been the respite from the atrocities seen at work. A safe haven if you will where one can leave their heavy gruesome baggage at the door. But it seems I can no longer walk up, drop the bag and not worry about it for a few days.

It’s like 8 heads in a duffle bag (movie reference), you know at one point you held the bag but now it’s gone missing and no one needs to see what’s inside. So what do you do?

You panic.

Therefor in a constant state of panic I am! Oh I may look cool on the outside (or really angry and moody as has been brought to my attention) but inside a constant state of disarray exists! No longer am I able to complete a single task as my life spins out of control. Raising these kids mostly on my own, caring for my wife using the same skills acquired over many years at work, the line begins to blur between work and home. With that blur the demon heads are no longer at rest inside that bag on the porch. They come out at all times of the day or night. Some days they bark at my inner walls, clawing and screaming so loud I cannot turn them away and so, I bark back. For those who know me, who know me well, when I turn on something I do it in grand style. It is never pretty, it is mean spirited and hurtful. It is shameful to say the least. Then the bag disappears and more panic sets in as I must find it and keep it from anyone else. It can never be seen! EVER!

So here I am, still left wondering.

What is in store for our family? What is in store for their lives? How am I supposed to protect them from the boogeyman, that hidden danger or beast waiting just outside the door? What lays ahead for my life and how am I ever supposed to keep moving forward? I mean, I am moving forward aren’t I? I wake up every day and put my feet on the floor, pull up my big boy pants and move through the day just like everyone else. But where is the break? Where is the respite we have been told is coming? When does my wife get a break from her constant inner struggles which are also mine? When does she no longer feel pain? When does her body become strong again and she no longer needs to live on a regiment of medications that leave her weak and sick? When do we see the pot at the end of the rainbow? Hell I would even be happy to just see the fucking rainbow!! Why has my life been hit so hard, and why does it continue to get hit time and again? What the fuck did I do to deserve this and if it’s a Karma thing and it’s me, why is my family paying the price, over and over and fucking over again!! Can we please get a break? Can we please just have our lives back????

I am angry, angry as hell and I feel as though I can no longer hide it! People tell me I need to take time for me, hell I tell others to never lose who they are and work hard at taking time for themselves to keep that spirit alive! But lately taking time for me feels like being trapped in a buildings revolving door and I can’t get out! Spinning so fast I can only feel a moment of either freedom or pain, never able to fully step from within the confines of the door to one side or the other.

I worry so much about my children and all they have been through, I am in constant worry for my family and all they feel as we still make our way slowly down this forsaken path of a leukemia nightmare. I worry for our ranch and this life we built as I find struggles in maintaining its future for our family. I worry for my job as my passion has waned through this continued personal battle. I worry for myself as I push it all down deeper inside.

Please don’t tell me God doesn’t give me anything I cannot handle. That is a twisting of the actual verse Corinthians 10:13 referencing sin, and sinful choices. That although sin is irresistible, the lord will always give us an escape from such temptation.

So what is the end game? There has to be an end game right?

Is the end game hidden within 2 Corinthians 5:10

For we must all appear before the judgement seat of Christ, so that each of us may receive what is due us for the things done while in the body, whether good or bad.

If that’s the case then my wife is saint!!

But the question remains, why must our family continue to struggle? Haven’t we all had enough?

Why do I lay my head down at night and have mild panic attacks because my insides feel tormented. My mind never shuts down and I feel as though the other shoe has yet to fall. Why must I live in this constant fear? I don’t want the other shoe to fall, it cannot fall!

“Deep breath”

Thanks for taking a moment to read this and witness me losing my mind.

I have stored that up for a long time now. I just needed to get it all out. I know the answers will come when they come and there is nothing I can do about it. I know there are others who feel the very same way I do, and I hope if you are reading this you know its ok.

It’s ok to ask why, its ok to feel inadequate, its ok to feel as though you may be failing, It’s ok to struggle and its even ok to carry the extra load.

You know what’s not ok?

Keeping 8 heads in a duffle bag on your porch.

Yeah that’s never ok…..

2017 a story not yet written.

theycallmebetty12 Comments

The easy way out is to sit and complain, feel sorry for yourself or constantly wonder why? I have never liked the phrase “It is what it is” and yet for some strange reason it seems to be flowing from my mouth more than ever lately. As though my repertoire of emotion driven responses has taken a thoughtless vacation. In reality I have allowed myself to quit, therefore to find conversation worth having has lost its drive, its zest, leaving no creative or emotional yield.

Our family has started the year out with continuing troubles. It is beginning to feel as though each year meets us with a newer version of this show we call our life. A downcast tragedy written and directed by who?

Our lives are a journey, we are never guaranteed safe passage through it all and though it would be easy to complain or blame God (trust me I have done my fair share of why me? And what the fuck!!) In the end it is up to me not God to make a difference. To cry towards the sky with a shaken fist screaming at a creator or heavenly being leaves only the foolish exhausted and hoarse. God (depending on what you believe) may have created you, but you and you alone need to be able to hear the voice when it calls to you. To open your eyes and your heart, to remove the blinders and stigmas that come with the drudgery of day to day living before you can make an appropriate decision or change with your life.

The reality of it all is we (my family) are nothing special in the grand scheme of things. We (my family) and our troubles are but a spec amongst the hundreds of thousands living with troubles/struggles of their own. What makes our struggles any different from those struggling around us? What I do believe is how we handle our situation in particular may lead to another feeling hope while they wallow in the despair of their own personal pool of troubles. Sharing, compassion, and the ability to constantly learn, change and grow is what makes us unique as human beings.

I often find myself thankful for the social media platforms we all enjoy. I believe it helps us all to find, create, share and understand much more than we ever could prior to living within our own social boxes or narrow geographical boundaries.

On one hand I believe much of our perceived troubles come from looking at others who consistently post online what appears to be a perfect life. If we don’t feel our lives are up to snuff we tend to live through others and that can lead to feelings of resentment or envy that we may not have the ability to recognize. And yet we also see others who are struggling with every aspect of life so we tend to either selfishly feel a little better about ourselves, or we become distraught with those troubles igniting our inner compassionate drive thus feeling an overwhelming need to help. Another amazing human trait that could easily be lost within the alternate reality world surrounding us. Although social media often times comes across to me as the biggest reality show on the planet (and I hate reality shows for there is nothing “real” about them) it is a mind boggling creation to say the least.

Where Social media becomes a place of hope from the heavens is during days like today. One blurb, a sentence or quip and Social media becomes what it was initially intended, a place of connection for everyone you care about to come together. Words of encouragement flow like rivers to the sea. When someone is in trouble, within seconds there is another there to help. When a message needs to be heard by the masses this electronic medium becomes the town crier! It has become a community without terra firma.

 

So thanks to this wonderful world of connectivity, 2017 has not started out as bad as one would think. We are here, we are all alive! Encouragement and love flow freely through texts, blurbs, snaps, postings, phone calls and the shared written word. I say take whatever life has thrown at you and find a way! There is always a way. No person should ever feel the world or deck is stacked against them solely. It is your life, you and you alone make the decisions on how you are going to handle the curveballs life can and will throw your way. I may not like what is happening right now, I may feel frustration over how our life is going and what is happening within the confines of my little niche in the world, it may pain me to see the woman I love and our children suffering through what is essentially a not fair situation. But there is always something to be learned, a message to be shared, a heart to be touched, a moment of never ending love to be cast upon those involved.

We will get through it all, journey be damned.

Jacy is still at Stanford and will be there for an as yet undetermined period of time. She has a pretty bad case of pneumonia along with Rhinovirus (a cold). Now a cold is not so bad except Jacy has an extremely compromised immune system which can lead to very serious complications if she becomes infected.

For a few months now, Jacy’s heartrate and ability to breathe have become a huge concern for us. She can’t make it from the bed to the bathroom without a heart rate of 160, and her oxygen saturation levels dropping into the high 70’s, low 80’s even with oxygen on at 4 liters per minute. She ends up winded and exhausted by simply moving 20 feet. It has left her demoralized and feeling defeated.

The other morning as Jacy was having trouble controlling her heartrate and breathing, and the world became rapidly smaller she felt as though she was going to die. It was painful and it was scary. There was no feeling of bliss or relaxation coming over her and in that moment as the lights were growing dim she realized this was not the way she wanted to go. She was choosing for herself, fighting for her right to pick where and when!

Yesterday in the hospital still sad that she missed out on Parkers birthday she vowed to fight even harder. This thing, this GvHD will not win! There is way too much at stake and no one is going to tell her how it is going to be!

So today she sleeps, today I quit whining about how tired I feel, today we relish in the endless love shown us by friends and family through phone calls, texts and the almighty social media! Today we look forward to what tomorrow has to bring.

Tomorrow isn’t written yet and what we do with it determines how this story goes….

 

 

 

 

Jacy Update; One year later.

theycallmebetty8 Comments

She walked down the hallway to a thunderous applause. Smiles, cheers, and hugs were the benchmark set for the morning. As always she made it (strolling down the hallway) look effortless and few would know she was doing her very best to simply stay upright. She had made it, she had survived when many felt she wouldn’t. She outwitted, outlasted and outplayed what was initially supposed to be at the very most a 4 month stay. It was almost 8 months instead. She had become a survivor.

That lone walk one year ago down a Stanford hallway, headed towards an exit was five minutes of pure bliss.

Fast forward one year.

Today marks the one year anniversary of my wife walking unassisted through the hallways of Stanford Medical Center to an awaiting car. She came home on that day and sobbed uncontrollably upon crossing through our gate onto the ranch. Her eyes cast upon land she felt she would never see again. It was a miracle and my faith had grown stronger.

Over the last year;

We have been to the Emergency room more times than I can count and it hasn’t gotten any easier. Even though no matter what hospital or emergency room someone remembers Jacy and we are always treated like family. But each time her body dictates we head that direction it feels like a giant step backwards and of course the inevitable panic attack associated with walking through those doors ensues! Fear solidly grips her mind as the thought of never coming back out is always present.

She goes to Stanford every two weeks for three to four days of treatment for her GvHD. It is a struggle, it rips at the fabric that is our family and we are very blessed to have continued help through immediate family and friends. We knew this wasn’t going to be an easy journey but wow, what a journey it has become!

I have become well versed on all medications associated with GvHD (Graft versus Host Disease) their indications and contraindications and with this knowledge my professional skills have been sharpened; specifically in the arena of assisting, acknowledging, and caring for any patient who has or has had Leukemia or cancer.

Our faith has been tested. We are constantly wondering what the bigger picture is here, what the “big” plan is supposed to hold and if we will ever receive a clue as to what is the answer. We wait patiently, trying our very best to understand, crying together, praying together, wondering about what the future holds-together. We feel robbed, she feels robbed of a life that once was so active and brisk. We both feel admiration and jealously as we watch other families, couples and dear friends moving on with their lives, posting pictures of holiday weekends, trips to Disneyland, camping and nighttime outings. It brings about feelings of remorse over time wasted, projects never tackled, feelings never shared, opportunities missed. All while a clock tic-tocs away in our heads.

It is a lot of weight to carry, not knowing if you are going to live or die. Knowing inside you can still feel the strong powerful woman you once were trying her best to roar like a lioness while recognizing those memories are waning, fading away, replaced by memories of milestones like the time you walked unassisted from your bed to the bathroom without collapsing or were able to get dressed with no oxygen on in just under 15 minutes. You are struggling to make the most of every day while only having enough energy to be cognoscente for 5 hours or less. Sleep is the only thing you know. You quit staring out the window because you can no longer have what’s outside. Fear gripping you constantly as anxiety rips through your soul. The only cure is more medication and a television filled with trash TV to keep your brain occupied 24/7. It becomes the new normal.

It is a lot of weight to carry not knowing if my wife is going to live or die. I have worked hard at caring for her over this last year. I have always thought of myself as kind of a half ass husband, but I can say without a doubt, I have done my very best to care for this woman I love. Making sure she has what she needs when she needs it, being there to hold her when she cries, assist her when she walks, make sure her medications are on time and she has food to eat before she takes her pills. I have grown to let her do things even though I don’t think she is ready for it. It gives her drive and purpose and if she can’t complete whatever she is trying to do, I am right there, a step away to encourage her when it is all over. I miss date nights with her, laughing our asses off at a little hole in the wall we would frequent in Winters, drinking wine and beer. Her staring into my eyes our faces inches apart and that smile! Oh that lovely beautiful smile!

But what I have instead is a better understanding of what marriage truly is. We all say the words; in sickness and in health, till death do us part. But how many truly understand the meaning? Marriage is a journey. And much like any journey it begins in the comfort of a room, with hopes, dreams and well intentioned plans. You both start out on the journey together, with fanfare, family and friends all wishing you well and it all seems smooth in the beginning; but when the journey strays off course, life becomes hard, bitter, with at times both of you not following the same plan you begin to define your relationship, and as storms come and go you rebuild, alter course and travel onward. A solid bond between two people and a solid relationship will flourish and grow with continued love and understanding thereby creating a foundation of stone.

I feel our relationship has done nothing but grow, leaving that foundation of stone for our children to stand upon and hopefully flourish. So although it has been a difficult year, good has come from this giant hill we are climbing together.

I haven’t been writing a lot about Jacy lately because we are living in our new normal. But as we move into the New Year approximately two hours from now I thought we would start the year off with an update.

Jacy has been feeling very sick, she is exhausted all the time, and can barely get out of bed. She has oxygen on 24/7 as without it her saturations levels fall dangerously low. Our family just returned from three days at the coast with family. Jacy was able to get out one day for four hours. She sat on the beach and enjoyed the ocean air surrounded by her sisters. It was an amazing moment for her and our family! Once back at the house she slept (not by choice) pretty much the rest of the time.

We are waiting to hear from her doctors as to what our next step should be.

She is scared as she doesn’t feel right, which of course is a different “right” from whatever “right” really has become for someone as sick as she is on a daily basis. She just seems to stay weak instead of getting stronger and that isn’t good. She has asked that as we head into the New Year, if people could please take a moment and send some prayers her way she would appreciate it. As we have seen over this three year journey a little prayer power goes a long way.

As the year comes to a close, I want to personally say Thank You to each and every one of you who have assisted my family in any way. Without the love and support we have received this journey would have been unimaginable.

Thank you all, Happy New Year and may all of you be blessed with an outstanding 2017!

 

 

 

 

 

Let’s go, let’s show, let’s rodeo.

theycallmebetty3 Comments

Red was loaded down. The old truck held every conceivable piece of equipment one needed for a successful weekend. Saddles, bits, hay, shavings, chairs, clothes, food and one 33 foot long trailer. Three horses tucked neatly together separated by aluminum dividers munched on hay pressed into a bag that hung directly before their faces.

As we pulled out of the driveway the truck sputtered a few times, we even had to shut it off once or twice to reset the computer so she would keep dragging this heavy load. But no one cared. Any other weekend old reds antics would bring a look of nervousness upon our faces, an eye roll or two that this 208,000 mile beast was acting up again. But on this day we carried a bit more weight, and with that weight came a feeling of ease. Like we couldn’t do any wrong. I have to admit, even my feelings about whether we would make it or not waned.

For in the back seat, smiling from ear to ear, nestled between her two smallest children with a bag of needed supplies at her feet was Ms. Jacy!

Ms. Jacy had decided after two years of missing out on rodeo, not being a part of her children’s lives, unable to laugh and have fun in camp at night with all our friends, she was going to this rodeo hell or high water! No cancer, no leukemia, no AML, no bone marrow transplant, no GvHD, no nothing!! And so after carefully packing her bags, loading supplies into the trailer, GO, is exactly what she did!

There were plenty of worries/fears to go around. What if it is too dusty for her lungs to handle? What if she has an issue with her breathing? What if she becomes so fatigued she can’t move? What if she develops an infection from being around the animals??? What if, what if, what if?????

What if she was never able to personally witness the joys of her children participating in the one activity they really love ever again? Yeah, we believe that one thought outweighed all the other “what ifs”.

In reality, Ms. Jacy has been getting stronger. Her lungs still don’t want to fully co-operate, and neither does her body, but she has taken the stance of what doesn’t kill me should make me stronger! With that stance also comes a belief that she can look at life two ways.

  1. Sit in the house all day waiting for things to change, hoping they change, praying they change then regretting having done nothing but wait.
  2. Muscle through the pain, the discomfort and focus on what’s important. Living life, any life no matter what that life holds because in the end you can sit and watch it go by or jump on board and ride the wave!

Now as her husband I cannot lie, she worries me constantly. But if you know my wife then you know there is nothing, and I mean NOTHING anyone can say or do to change her stubborn Cuban mind once it is set!

So with that being said, she came along, which is exactly what we all wanted and it was a fabulous weekend! She was so happy to see her close friends, to watch her children perform, their children perform and to just be a part of life again! It was tough at times, by mid to late afternoon her feet would swell, she would be exhausted, but the kids were great, her friends were fantastic, and she never, not even once felt like a burden to anyone!

At one point during the rodeo we came back to find a poster on the side of our trailer! It was created by all the kids and it told of just how much she was missed and loved. It melted her heart.

Each morning she awoke with a smile, ready to watch rodeo, participate in any way possible, drink coffee, take pictures and catch up with people she hadn’t seen in years. It was the very best therapy anyone could have asked for!

The kids all did great! It was the best first rodeo I can remember in a long time! Oh Jessica struggled with her new horse and at one point actually fell off (of course she laughed at herself), Jake had a great Saturday but a stubborn Sunday and Parker didn’t quite get his steer wrestled, but it was a weekend filled with laughter and plenty of smiles.

Sunday night the traveling circus rolled back onto the ranch. Old red made it without a single hiccup which I found unusual. But as we cleared the front gate and rolled towards the barn, there lay three people, all half asleep, all exhausted from the weekend, all with looks of contentment upon their faces. (Jess rode home with friends) It was a thing of beauty.

Now of course this was short lived for as soon as I parked they all abandoned me to unload everything as if I was somehow their personal servant or barn boy which of course sent me into another stratosphere!!! But I digress…. Deep breath…. Phew…. Ok….

The point being, for a weekend, our family was back together, doing what we love, with momma in the stands cheering them on, sending them momma powers, and good mom mojo while I worked the arena, helped get horses ready and coached them along. It was the way it was supposed to be at that very moment in time. A step closer, as if life was almost back to normal.

It was a perfect weekend.

 

 

 

I met a woman today….

theycallmebetty3 Comments

I stood nervously rocking back and forth. I don’t know why I still get nervous after all these years but I do. Just another presentation, a dog and pony show as it were but for some strange reason my brain reverts to when probationary was the status written below my helmets crest. Fear of failure, saying the wrong thing, not adequately relaying information to a public mass who in reality is really happy to have us around. Sure there is the occasional grump or bitter individual who for some reason carries a chip on their shoulder whenever we are around (and this night was no different) but the majority simply want to say hello, or thank you, or in some cases words can’t form and they sheepishly smile while politely waving as they pass.

It was a local schools annual harvest festival within our town. Our fire engine had been assigned to appear as part of an ongoing public education effort. We pulled up, met with organizers and took our place upon the basketball courts right next to our local Police department’s display. Doors opened, cabinets exposed, wrinkles shifted from our shirts, plenty of stickers loaded into the upper right pocket and in mere seconds they came and came and kept coming to our delight..

Over the course of two and half hours we helped children into our engine, showed them all our fire gear while explaining what we do along with a little bit of how we do it. Kids make me smile, they are honest, truthful, hilarious and have no filter. They are perfect human beings, their thought processes still untouched by the cruelty of adult life along with hurtful biases or opinions. There are days I wish I could still witness the world through their wide absorbing eyes. Days I wish I could go back and do a lot of things over again, channeling my inner child to greater achievements as an adult. But I can’t, none of us can and so the fun in my job is being surrounded by these fantastic awestruck little people.

Tonight though something else happened. This “something” has been happening more and more and I am not sure what to make of it. It always catches me off guard and I never know quite how to behave or present myself. Much like an acting student who for some unknown reason develops a serious case of behavior altering stage fright, I freeze under the pressure and become extremely uncomfortable.

In the middle of giving demonstrations a line had developed filled with children (and a few adults) waiting to climb into our Fire Engine. As we happily interacted with the masses by placing one child at a time inside the engine for picture opportunities a woman walked up and gently grasped my arm. She looked me in the eye and asked; Are you Betty? To which I replied; I am?

She then explained she had been battling breast cancer and with it how much she thoroughly enjoyed Betty’s writings.

As has been the usual mode of reaction, my cheeks felt flush, my heart rate doubled and I mumbled something. I don’t remember what I said because after I learn someone actually reads and enjoys my writings in person I suddenly feel like a 12 year old boy who has just professed his admiration to the prettiest girl in class and she’s responded by saying she likes me. Awkward and elated all at the same time!

This sweet lady with the kindest smile told me her husband was amazing, and how much she appreciated him along with all he has done for her during this very trying time in their lives. She asked if she could hug me, I said yes and as she did I felt thankful, warm, full of love and humbled.

As I have stated on numerous occasions, this blog took a life of its own when my wife became ill. It morphed into what I hoped would be nothing more than a journal to reflect upon after we hopefully conquered Leukemia. Then as time progressed it changed into an open forum for all to read hoping other spouses in my shoes would know they are not alone. A gnawing deep inside told me to share through my experiences with other spouses or caregivers. A reminder to others they have the power within them to carry on, pick up pieces and provide a solid foundation for not only their family and loved ones but for the countless other lives they touch along the way. Cancer, Leukemia, and Bone Marrow Transplants are no longer something someone else has, a blank face or nameless person looking sad upon a Facebook post or commercial asking for donations either monetary or life altering. But real people you know or someone you know knows! We can no longer turn our backs believing it is someone else’s problem to deal with because trust me the statistics showing those affected are all too real! This power lies within you to open others eyes, to reach out and comfort those who need your help because you my friend have walked this path and survived! These diseases do not curse just those who are carrying them and trust me their fight is hard enough for them to live with and handle on their own. But the entire process both physically and emotionally beats down hard upon all of us who live, love and care for those stricken. It is at times overwhelming at how much our lives change and the inner pain it can bring.

So to hear another human being while holding your arm explain with the warmest of smiles and softest of hearts exactly how your writings have meant something to them. Well that brings up emotions that are hard to contain.

I am not sure why I fumble my words, or feel uncomfortable. Maybe because I am shocked that anyone takes the time to read my blog at all. Helping people is all I have ever wanted to do, I always wonder just how many people actually take the time to read this spattering of words and I always wonder who? Who has it helped, who really needs to hear from someone right now because they feel as though they no longer can? Who? Who is at the end of their rope or feels like God doesn’t have a plan for them and this is all just a miserable dark place in their lives that will never end! Who? Am I reaching enough people? How do I reach more? If I do reach more am I writing the right material or am I even the right person they should be reading about? I really don’t think you can write the wrong material as long as it’s truthful and from the heart. But, what if I am wrong and someone out there is missing the point or thinking if that guy’s in pain, you know the one writing about always having faith and carrying on is in pain then why should anyone have faith things will be any better? I don’t have an answer to that!

Yet it remains so important to me; sharing that is. It has become so paramount there have been nights I lose sleep out of guilt for not having written in a week. Our loved ones and/or caregivers are so important, they bear so much emotional burden and over time people who were helping, slowly fade away. Its ok, they have lives, we as caregivers were and still are extremely blessed for the time any and all assistance was provided! It is how it’s supposed to be and no one expects anyone to still be constantly rescheduling their lives, away from their families and friends for 2, 3 or even 4 years later. Suddenly though one can understand how it is to become isolated and alone. 24/7 your whole world revolves around a single human being. Try as hard as you might at some point even your kids begin to suffer! Your intentions are great, you do the best you can and strive to keep their lives busy and full but trust me they feel it! They feel the isolation and to some extent a bit of emotional disconnect. Nothing changes though, we are still there, handling every aspect of our stricken loved ones lives? It is a job we take a lot of pride in, for if you love someone there is no greater gift than to care for them when they are down. It is what love is, it is what God would want.

So to the woman I met today.

Thank you, for filling my heart with joy, giving my writings meaning, and allowing me the honor of meeting you. I apologize if my response was awkward, it was not my intention.

You reminded me that one of the greatest gifts we as human beings have is the power to share ourselves openly with others. You gleefully shared your story with me by my having shared my story with you over time on these pages. Our lives crossed paths and I will never forget that.

My heart is full.

 

I can’t…

theycallmebetty7 Comments

This morning I sat down, stared at the screen and thought; it has been awhile, I need to write. Hmm? What will I write about today? Maybe something funny, or pertaining to recently turning 50? I certainly do not wish to write anything sad. After reading a few of my last postings, I found my writings to be a tad whiney, or heavy. People certainly must be tired of the same old story.

Then as paragraph after paragraph littered the screen only to be erased by the mighty stroke of a delete button it came to pass I was trying too hard. So I asked myself; Self, why haven’t you written in a while?

And that’s where this posting truly began.

Betty, why haven’t you been writing?

The answer comes from a conversation openly held in the day room of a busy firehouse. Sitting in my recliner listening to others and their crazy busy lives. Camping trips, play dates with friends for themselves and their children. Fantastic vacations or simple evenings at home surrounded by family. Listening to life moving on as it should.

What was my answer?

Because I can’t…

Every time I think about writing lately, I stare at the screen and from the darkest bowels of my inner thinking machine a voice rises above all conscious thought and whispers; you can’t.

Getting up in the morning is a struggle. Oh I received 6-8 hours of sleep, yet the moment I must rise a fight with my inner voice arises. I can’t is all I hear. I may wander over to ensure the kids are up but then against my old daily routine I just climb back into bed, pull the covers over my head and pretend I’m not there because inside I just can’t see myself doing another day. I get over it and most days turn out pretty good after running into some of my favorite parents, co-workers and friends. But it is becoming an increasingly difficult struggle to get past step one of the day.

There is a mile long list of repairs and maintenance around our house. I wrote the list, and continually add to the list, yet I cannot seem to accomplish the list. I may get one or two of the easy things done, but then I panic, feel sick, and want to sit down near Jacy and veg-out. Excuses like needing to pick up the kids in an hour or man I am really tired all come to the forefront. But in the end, I just can’t seem to see myself getting anything done. I am sure it is no different with any other busy father, but for some reason that feeling is more burdensome than ever before.

Ever cry at sappy movies? Apparently the water works now turn on for just about anything! Ok watching the SPCA commercial where Sara McLaughlin is singing while sad eyed, unadoptable, abused animals are trapped at the shelter doesn’t count. You have to be pretty heartless to not squeeze a little water out of those orbital areas of yours after watching puppies cry. I found myself tearing up explaining a reality show the other day where the daughter of the contestant showed up to tell him he won! Kids doing well on Americas got talent, winning a round of American Ninja Warrior, or watching the friend’s episode where Ross and Rachel finally kiss!! Yep they all bring on the rain! WTF???? Hell Tommy Boy was on the other day and I was crying at the passing of Big Tom Callahan!!! I just can’t keep crying at everything it is wearing me out!

My fuse is much shorter and I can’t seem to control it or keep that Irish/Italian temper from rearing its ugly head. Poor Jake has been bearing the brunt lately. Now some of it rightly deserved but in hind sight more than a few times have gone over the line with things said that cannot be taken back. He always smiles at my apologies and says it ok he forgives me but all I can think about is deep inside I am probably hurting him, hurting his ability to grow and handle stressful situations. I am afraid one day I’ll snap over something stupid and he will have had enough. Irreversible damage complete. Then what? Oh well I can’t seem to wrap my mind around the parental complexities of this issue right now because I will start crying again and no one needs to see that here at work.

Everything seems impossible. From completing my monthly budget, paying bills, changing a light bulb or even just being something, anything. It all seems too much right now.

As I am writing this I just realized my heart rate has doubled. I figure it’s my fight or flight response to even mentioning any of this in combination with feelings trapped inside that I can neither recognize nor willingly let out.

I keep using the analogy that I am a bottle filling with sand. Burdensome, gritty, heavy sand. This sand has reached the top and either I am able to upset the bottle, pouring out this heavy, gritty, burdensome property carefully into a container of contentment or it will overflow, and we all know what happens when sand pours upon us against our will. We end up carrying it home, it’s stuck in the crack of our ass and it takes a month of vacuuming to get it out of the car!

Our life has been incredibly hard. It remains that way. Watching my wife suffer daily is taking a toll on me. Of course I have no right to complain in comparison to the toll it is taking on her. It has been a long, long road.

Jacy has had several hospital stays of late. The other day they put a port back in to help with her current treatment which feels like a giant set back. The steroids have doubled the size of her face and left her weaker than normal. The other day while at a friend’s house doing her very best to live life as normal as possible she fell. Yep, a simple walk down a 10 yard path from patio to arena and her legs just quit! She ended up with a bloody, black and blue eye as her sunglasses tore open the fragile flesh under her eye. She feels consistent insult to injury on a daily basis.

My wife has decided to live life, to go to rodeos, make trips to the store, and do her best to become the mom that she was pre-BMT. She doesn’t have the energy or the strength, but she does have the resiliency or ballsy moxie to do exactly what she wants, family or doctors be damned! I admire her on many levels. I do my best to let her accomplish what she wishes within reason, while at the same time worrying if she is doing more harm than good? Once again though, who am I to say? I don’t currently have the body of an elderly woman, no strength, no vision, with pain surging throughout my entire body 24/7. I don’t need to consume 23 meds, three times a day while also partaking in breathing treatments (4 different kinds) wearing oxygen and doing my best to keep myself fed when I either don’t wish to eat at all or only crave crap food of no real substance? I may be her husband, the only person she can truly confide in, the one who promised in sickness and health, till death do us part. Yes that may buy me some vote, but if it was me? If it was me this was all happening too, would I have the strength to make it another day for my kids the way she does every single day? Would I wake up every morning, take my meds, and then do my best to smile while making school lunches even though I really can’t see? Could I sit in a chair for most of the day either passed out from the very same medications or wide awake scanning the internet feeling like shit because I couldn’t go outside with my horses? Could I kiss my kids goodnight with confidence that tomorrow will be a better day like she does? She is angry, she is sad, she is happy, she is resentful, she is hopeful, she still wishes every day for one more day, one more week, one more month, and one more year. Another camping trip or the ability to take a family cruise. She is amazing.

Could I be like her?

I can’t………………………..

 

At the end of the day, whiny or not, dark and gloomy be damned. I decided to write these blog postings journaling my wife so others who may be feeling the same way would know it is ok. It is part of this weird, sometimes unforgiving magical mystery tour we are on and you are not alone. To those currently in treatment. This may be the way your caretaker or spouse is feeling and to know they love you, care about you and will do anything to make your life, your situation easier for you. We will never leave your side, so don’t be afraid to be who you want to be, use what strength you have to enjoy whatever moment you wish to enjoy and know the whole time we will be standing right by your side. Even though right now I feel as though “I can’t” when it comes to many things, I will always believe in the “can” most of us hold deep inside. I also believe that for the most part all people are good caring human beings and no matter the situation we all rise to the occasion.

Ok, I’m done. I can’t write anymore….

 

 

 

 

Fear

theycallmebetty2 Comments

Let’s talk about fear.

Fear is a state induced by perceived danger or threat that occurs in certain types of organisms, which causes a change in metabolic and organ functions and ultimately a change in behavior, such as fleeing, hiding or freezing from perceived traumatic events.

Traumatic events?

Like watching your wife wither away to nothing, struggling to find happiness because she never feels as though there is any progress being made. To her it feels as though her body is just not getting any better! Gloom at only having only enough strength to make it from the bed upstairs to the chair downstairs then remain frozen in time as the world passes her by? Nightmares that she is still at Stanford, never to come home again.

A change in behavior?

Oh yes you mean as in a person once vibrant and bubbly now hiding from herself, the mirror and even people, for she no longer sees herself in reflection but the remnants of a weary, pharmaceutically scarred body? She no longer hears the echoes of love resonating but wallows in pictures from what once was feeling nothing but self-doubt. Trying her hardest every day to find a positive reflection only to collapse under the burden of repetitive negativity pounding in her brain.

Induced by perceived danger or threat?

As in cold sweat, elevated heart rate and blood pressure whenever the word “hospital” is uttered. A doctor insisting she walk through sterile front doors to an awaiting isolation room with no timeline for departure. The minute a fever arises or a cough lingers to long.

The thought of our children being alone, again. Waking up to an empty house, no wife to found, sad faces walking like zombies as they know they won’t see dad again for another few days. Family will help, faces will be there for comfort and assistance but it is not their parents. The threat of mom and dad not being home, wondering when they will come home and if mom will come home at all is always lingering.

And so fear grips us again as Jacy has made another journey to Stanford.

Work has been crazy hectic! Coming home on Wednesday after being at work for three days I walked into an empty house. The first day of school was in the books! Jacy’s one wish through all her recent complications was to make the first day of school. To be with her children and tell them she loved them as they exited the car. She accomplished her mission. After two years with me sending first day photos to her in the hospital I came home knowing my wife was going to be ecstatic! Yet one thing I did notice while at work, was she hadn’t posted anything on FB. Seriously! It is a first day tradition across this great nation to post your first day pic’s on Facebook!!!! Something must be wrong…

Making my way through the house what struck me was the utter silence, then as I made my way through the house I realized it was way too quiet. Calling for Jacy I received no answer. I really did expect her to be downstairs in her chair half crying/laughing waiting to tell me just how amazing it had been to drive her children to school and drop them off! She reached a milestone; living long enough to see her kids off to school one more time. But there was nothing, she was nowhere to be seen.

Checking the window to ensure I had in fact passed her car on the way up to the house. I turned and sprinted up the stairs, opened the door to our bedroom and there she lay, in a ball, crying/moaning. She wasn’t shedding tears of joy, but instead tears of pain. After a little conversation and a full patient assessment I asked if she wanted me to call Gayla her nurse coordinator. She asked me to wait until her pain meds kicked in, and so with hesitation I planted myself at the desk and waited. I didn’t need to wait long.

The pain was enormous, her head hurt, her body hurt and she felt nauseous. All bad signs. An immunocompromised subject’s body is constantly doing a fine juggling act between medications that both allow her immunosuppression system to work and drugs that suppress that very system. It is all in an effort to keep harmony while both allowing her white cells to protect the body but since they are not her white cells, keeping them from destroying the body which it sees as foreign all in the same stroke. Confusing, amazing and horrific at times to watch.

She finally stood up, looked me dead in the eye and said; I need to go to the hospital now! I again mentioned Stanford but was rebuffed as she could no longer tolerate the pain. We rapidly loaded a few things and headed to the Kaiser. Kaiser is no more than 5 miles from our home. We feel blessed to be so very close to such a wonderful facility. Arriving at the ER we were put in a room fairly quickly and were warmly greeted by staff. The on duty doctor was one of our favorites and within minutes (a lifetime to Jacy) she had IV pain meds which allowed to her to finally relax and feel some relief.

I stepped outside while a lumbar puncture was performed to call Gayla her nurse coordinator. After a brief explanation of her symptoms along with justification for the stop at Kaiser, Gayla assured me she would grab Dr. Muffly ASAP and call me right back. The phone rang within minutes and a transfer to Stanford was being arranged. Dr. Muffly wanted her there and she wanted her right now!

Of course Jacy wanted nothing to do with this plan! Fear had set in.

It was the first day of school and she wouldn’t be there when her babies returned, she promised she would be there! She didn’t want to be stuck at Stanford again, how long would they keep her, why are they keeping her, can’t she just go home after the headache subsides? She doesn’t feel like an inpatient, whatever they need to do can be on an outpatient status!

Fear makes you overlook the obvious. We all knew she needed to go. She was still in pain, we had no answers as to why her face was swollen, her head hurt so badly, and she was feeling nauseous. But fear can help you justify anything.

The ambulance came.

I had gone home, packed her some clothes and returned to the hospital just in time for the ambulance to arrive. We loaded her up and in usual Jacy fashion, people needed to come say goodbye and good luck. She is always making friends wherever she goes. Kissing her on the cheek, saying goodbye I closed the back doors of the ambulance like I have done a thousand times in my career. It didn’t feel right. I thanked the guys taking her and walked back to the car. Sitting in the driver’s seat with a very heavy heart I watched the ambulance slowly drive away.

My head hurt, my bones began to hurt and I felt nauseous. Here we go again.

I needed to work the next four days and Jacy made me promise I wouldn’t follow her down. I called her family and they agreed to meet her when she arrived so she wouldn’t be alone. I went home, greeted the kids, asked how their first day of school was and after a few jokes and giggles the elephant in the room reared its ugly head to bellow.

Where’s mom?

Now imagine being 10. Knowing your mom has been sick for a very long time, she goes to the hospital one day with the promise of being home in a couple of months. Instead you are living through her being absent from your life for 7 months while you travel back and forth to see her once a week. You now remember at one point it was very bad as nervous and scared adults circled around you, acting weird, treating you differently all because the end looked near. They kept it from you, but you knew because even though you are a kid, you are perceptive. Then you wake up one morning and mom is home! She is home in time for your birthday and all is right within your ten year old mind again. Now every time she goes to the doctor your 11 year old mind starts to worry. She comes back from the doctor each time, which makes you happy, but you still worry, and you are a little distrustful of information provided by adults in regards to your mom’s health.

That was look I had to deal with when asked; where’s mom? That look quickly turned into a squinty face and before I could even say; moms headed back to Stanford, the tears began to flow. They flowed hard and fast. Jessica looked in shock, Jake hung his head and Parker cried and cried some more. This little boy’s fear had come true and my heart was breaking. Some days I feel as though there is a constant grip around my chest and I just can’t take anymore.

The long and the short of it is this, we all face fear, each and every day in one way or another. Fear is gripping, mind bending and often time paralyzing.

I hate fear.

August 13, 2016

Today is day four at Stanford. I didn’t write anything or spread the word right away because I am having a hard time coming to grips with her being there again. It is weighing heavily on me and even though she most likely will go home on Tuesday evening each time it happens fear grips not only her but our entire family. We still have no word on the cause of her body pain or associated headache. Jacy had some severe swelling in her face that was most likely caused by a plugged salivary gland. She is partaking in *photopheresis?dialysis to hopefully clear her blood of any viruses still lingering around. Her steroids have been raised and they are tweaking her medications to be more proactive in this ongoing viral war. Getting her home can’t come soon enough!

More to come….

*Photopheresis

In medicine, photopheresis (aka extracorporeal photopheresis or ECP) is a form of apheresis and photodynamic therapy in which blood is treated with a photosensitizing agent and subsequently irradiated with specified wavelengths of light to achieve an effect.

 

 

It’s TIME!!!!!!

theycallmebetty19 Comments

Saturday morning has come and gone. Quietly I made breakfast for everyone, fed Ms. Jacy, ensured each child had done their required morning chores before anyone noticed we had all slept in a little too long. I met with one of our horse borders/friends I hadn’t seen in a while and put another load of laundry on rotation while the washer/dryer spun out their last few moments.

But something is nagging me.

Lately I have taken to working on the ranch from six to noon, dropping into a two hour nap after lunch then taking care of odds and ends in the house until bedtime. This routine has developed for a few reasons.

  1. It has become too hot for working past noon around here. The days of old where I could go and go and go for hours on end through 100-106 degree’s are long gone. To many years of riding around in air conditioned cars and sitting behind a computer doing reports in an air conditioned office have done away with any tolerance once held for the almighty heat.
  2. Taking care of myself has always been on the back burner. Taking care of Jacy then the kids is always first and foremost! Between softball, rodeo, Jacy, doctors’ appointments and the ranch (thankfully I have awesome help in that regards) anything to do with me is nonexistent.

Once rodeo and softball finished I finally found some fresh air, a breather if you will; time to do what needs to be done around here and that led to my newly installed schedule which as of late has been working great!

Almost too great!

You see after a week of my newly created schedule, things around here are getting done! I am able to plan for the next month or so projects to be completed. I am not exhausted from going all day trying to get something finished in record time. Taking instead the stance of “a little bit each day leads to a lot in the future”. It is as though,,,,,,,,, wait for it,,,,,,,,,, my life is normalizing….

I know right?? A normal day, with a normal schedule, with a normal outcome! Who would have thought? Today is my last day off and tomorrow I will be back for a 48 hour shift. I chose to sleep in today after,,,,, wait for it,,,,,, a date with my wife last night!!!! WHAT??????

So today I took it easy and I feel fairly rested. Tomorrow for the first time in a long, long, really long time I will not be dragging my ass into work completely exhausted!!! It has been so long since I have felt this way that I actually feel guilty. As though something must be wrong with me!

But with sleep, rest and a normal working schedule there comes another small dilemma.

My brain is working again. Yep running as though it’s an engine with high octane fuel coursing through its pistons! Lots of horse power to spare and nowhere to use it! I cannot turn it off! Ideas for writing just flowing through my head! So far this morning my fingers are cramping from typing! I finished a few other stories written for myself or some publication in the future and then you see I have this idea for an e-book!

Yep, it’s been racking my brain this whole book thing, and I need some help. I have flirted with writing a book in the past, had several very kind people insist I should give writing a book a try and even started a few outlines. Many ideas and formats have crossed my mind and I have enough material for several books on Haiti, Mission trips, Leukemia and of course raising children. But none of it flows and like a never slowing carousel; where exactly do I jump on without getting hurt? Or do I just dare fate and take a leap of faith? (hmm think I just answered my own question) Now whether this emotional wall comes from my two year hiatus of exhaustion or just my inability to turn off my ADD long enough to form a correct thought or not has yet to be (oohhh butterfly)….

ribbon

I’m back, where were we..

Oh yes, so I need some help from all of you. You see I can’t do this alone as much as I would like too. So I am going to start bouncing ideas off the mighty brains of all three of my readers (sarcasm)! I am not saying I will use your ideas, or even like them, but I will appreciate them and use some of them and that folks is what brain storming is all about. Collective minds working for a greater good.

You are probably asking yourself why? Why am I doing this and what will my topic be? What is the overall purpose? What do I have to offer Betty? And why isn’t Betty running for President?

The last one we will talk about in 2018 when I start campaigning.

So let me give you some information to help get us started.

  1. The book will be about surviving as the spouse of a Leukemia patient
  2. Do I write it as a “how too” or a rough guide? Dry and simple, listing resources and web-sites for those who need a place to reach out?
  3. Instead of writing it as a “how too” should I expand upon my blog, telling the whole story as more of a living biography? Hoping the reader grabs a message of faith?
  4. Should it just remain what it is, a representation of my blog, leading more people to read our story, find hope while reaching out for help and answers. Or should I elaborate on each entry a little more while basically keeping it the same?
  5. Am I just crazy and none of this really matters?

If you are a follower of my writings then you know all I have ever wanted to do was help people. It is why I changed careers in my early/mid twenties when I could have easily made a nice living driving/owning my own semi-truck to becoming a firefighter. I felt the overwhelming need to help people then and I feel it now. I have made no secret that I feel there is more, not only for me but for each human being on this planet. We need to work harder on helping each other as opposed to today’s current climate. Of course that is for a longer deeper discussion at another time.

I feel sharing our (Jacy and I) experiences would be beneficial to others. But especially from my point of view, that of a caregiver, husband, spouse. I know there are thousands of spouses/significant others/parents/siblings out there feeling lost, waking up each morning wondering if today is the day they emotionally quit swimming thus allowing the proverbial water to cover their noses.

I am here to say “drowning” is not an option. They have the strength in them, more than what they know or understand, and that one person who needs them most see’s them as a pillar of strength. That strength is there, they just don’t know it. I think, I can help.

So give me some answers. Let me know what you think?

Oh yes there is a number 6 to my request.

  1. Please, I hate to pander but if you like my blog, “like” it on Facebook then go to the blog, sign up for the emails and hit “like” there as well. Also share it with as many people as possible. The more likes it receives on WordPress the more followers I have which leads to more exposure in the WordPress reader. I love talking with the spouses who have reached out to me during this time and I hope to meet many more.

Thank you to everyone who answers my rally cry, comes up with ideas or simply decides to reach out! More to come, I promise!