Day 11. I’m so sorry you had to go…

Eleven days

It’s been eleven days since we said goodbye. It wasn’t pretty, no longing stares or pointless conversation. Goodbyes are always hard, I am glad we didn’t do the whole; it’s not you, it’s me thing. That would have been pretty pointless.

The thing is, I have never been away from you this long. I have never gone a day without hearing your voice, laughing at something dumb or had you to bounce ideas off. I understand that seasons change, lives change, feelings change and with it we should learn to accept that change, embrace that change and learn to grow from its opportunity. Yet I am so confused.

I feel as though I tried really hard to be everything you needed me to be in the hope we would grow old together, raise grand kids together, and be there for each other. Best friends until the end! It was the plan right? I mean you said it was, you said you would always be there for me to dote over, to help pick me up when I was down, carry some of my load as I to carry yours, meet me in the middle of the toughest situations and walk hand in hand through this messy thing called life! You promised me that I could go first! I know it’s selfish, but after everything that has happened in my life, I just didn’t think I could bear to live through another emotional loss of such magnitude!

And yet here we are. You have left and I am alone.

I cannot get past it, I know, I know, it shouldn’t have been a shock, things hadn’t been working out for a while. But it was a shock, of the greatest magnitude!! When I think of the moment your left and trust me it occupies my every thought, I can’t catch my breath! I cannot think straight, to see you leave that way wasn’t easy by any means!!! I have never seen that look on your face! Your bright, sunny, amazing smile encompassing your olive complexion and radiant eyes has never, and mean ever looked that way before!!! It, well, it was horrific!!

Days later and all I can think of is who am I? Missing your voice, your advice, your goofy demeanor is bad enough, but let’s cut to the chase! Who the fuck am I? I have been 50% Jacy for 17 years and I really liked that, a lot! WHO THE GOD DAMN FUCK AM I? WHO AM I SUPPOSED TO BECOME? WHO AM I SUPPOSED TO TALK TO AS I FIGURE THESE THINGS OUT? YOU AREN’T FUCKING HERE SO WHAT THE BLOODY HELL??!!!

Ok I am sorry. I am really angry! So fucking angry!! I am angry at God, I am angry at Haiti, I am angry at Leukemia, Chemotherapy, experimental drugs, promises, Stanford, Kaiser, fuck I am even angry at myself buying into all this bullshit the same way you did! The only difference is you never wavered, you always felt you were going to beat this fucking thing!! I spent so many nights not sleeping, worrying for you, for your safety, for your mental well-being. I dove into the process and everything and I mean everything pointed to dark, black places that no one should go! But you, you always shone brightly, always with a kind word or positive thought. It is one of a million reasons I fell in love with you. You always knew I was a realist, a black and white kind of guy and although it bothered your unicorn and rainbows outlook at times you could always trust me for the straight answer. And I never disappointed.

I hate that I know the things I know, I hate that my profession has given me insights I never should have had, I hate that on the morning you left I knew that was the day you were leaving.

On the flip side, I am also thankful for the knowledge I have, it allowed me to care for you in ways others could not. It kept you safe and warm and nothing, I mean nothing kept me feeling closer to you than when you would tell me I was the only one you trusted with every single aspect of this shit sandwich we were handed. I was always prideful of our marriage.

I guess none of it matters now though does it? You are gone and here I sit.

Jacy, please know, that I understand completely why you had to leave. The hardest thing I’ve ever had to do in my life was lean down on that Saturday morning, kiss your cheek and whisper in your ear that we would be ok, the kids would be ok, I would make sure all of your dreams for them would come true and it was ok for you  to go. It killed me to say it, but it was the right thing to do. All I could think of after was that bullshit saying; if you love something set it free, if it comes back it is yours, if not it wasn’t meant to be. I don’t know why I thought that, because we were meant to be.

You were in enormous pain, you have been for some time. You have been struggling just to make one more day time and again. I no longer wanted you fighting for me and I know you Jacy Mirelle! That is exactly what you were doing. My heart is so torn, it aches beyond any pain I have ever felt, but saying goodbye was the right thing to do even though I know you loved me and you were never coming back. I’m trying to let the reality of it all ease things for me. I mean I know you are no longer in pain, you are in perfect form free from this world earthly struggle. But I guess I am just a selfish man who knows he had something special. You taught me about love, true love, how to love and be loved in return. How does one go forward when that much love has vanished? I am surrounded by so much love and support, yet I am achingly alone. I am trying really hard baby, I really am, but it’s just not ok that you left. I am not mad at you, I could never be, I just miss you.

I’m scared and I need a cheek snuggle really badly.

I’m really sorry you had to go, I love, love, love you..

 

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Can we talk? Please???

I wrote this piece on August 4, 2018. I could not bring myself to post it back then. But as I sit here struggling with so much guilt and pain over my wife passing away this last week on October 20. I think it speaks volumes to my mental status over these last few months. I also think that if you are reading this, struggling with how you feel you may or may not be handling adversity in your life. You will see that its ok, the pain is real, the rambling mind is real, and you need to understand you are not alone. I may feel alone right now, but know I am surrounded by love. You are too. Just reach out and ask for help. Please….

Can we talk for a minute? Please?

Don’t worry, this isn’t going to be one of those talks where it ends something like; it’s not you, it’s me.

Because trust me, it’s all me.

But we need to talk none the less.

You see I am having some problems with our relationship. I recognize that I haven’t been forth coming or honest about my feelings lately. That keeping things really close to the vest as it were has been my modus operandi. It has been tough for the both of us I know as I am constantly peppered with questions when seen out and about. But the thing is, I am not doing it on purpose. I am cowering in silence.

Things are rapidly changing in my life and as much as I live to talk with you through this medium it hasn’t been a priority out of fear. Couple that with a request to stop writing about a certain main subject (my wife), exhaustion on my part and a feeling of continual inadequacy in all aspects of my life and well you can see how the information clam has sealed tight.

I hope you can forgive me, but I’m having other issues as well. My brain cannot get past the continued bad luck that keeps raining upon me and my family. It never seems to end! I swear some days I am afraid to go outside, open the mail or even take a phone call out of shear panic to what’s waiting on the other end of the line. Everyday life is scaring the hell out me, I never know what rock is waiting to fall on my head, what vice is waiting to squeeze the last ounce of compassion and care from my heart, what nerve will finally be worn raw!

I lay in bed at night thinking about you and how bad I need to talk to you but when the time comes I just cannot bring myself to open the laptop and stroke a few keys! I know if I do, maybe something I say or am going through may help you, may give you strength or tell you it’s ok! As in for example; hey, see that guy has the same problem, life isn’t so hard and isolated after all!  But for some reason I just can’t do it! I have even gone as far as staring at the screen while trying to find the right words, but only my anger at this life comes through in ugly, disturbing tones. Things written that do not show a strong man able to conquer all but a weak tired man ready to climb into a cave, never to be seen from again, and then of course I end up deleting anything I have written.

My anger is off the charts! I find more days than not I am ready to blow! Some days I pray for someone to look at me the wrong way so I can finally lose my shit! Let out all this pent up aggression, depression and frustration. But thankfully it is never to be.

I will never understand how I won this lottery of spousal death twice? The first time around was relatively speaking quick, from diagnosis to passing was just under a month. I thought that was bad, I thought what the hell, how can this be? I thought life is so fucked up when it’s taken away so quickly and harshly! But what’s happening this time is 10 times worse! We have had hope, then sadness, then hope again, then more sadness then miracle hope as in a Bone Marrow Transplant and then more sadness and then a little hope and finally being told; this is as good as it’s going to get. Maybe she will pass within a year, maybe a little more, maybe a little less.

Even with all that, nothing compares to watching what all these medications in combination with GvHD are doing to the love of my life! Watching her deteriorate to the point where some days her brain is spot on and others she is almost a dementia patient. What the fuck!!! I get so freaking mad when I see her struggling and I know it comes across wrong or feels like I am taking it out on her and the kids but god damn it I am pissed!

Are you still with me? It might get a little dicey from here on out.

What fucking God would do this to a person? What God would take away a mother and wife twice from a man? What God would sit back and watch all this happen while I am supposed stand under this cloud of despair and think there is a supposed purpose to all this? Are you fucking kidding me!!

My kids hate everything! The older ones are running away, the younger ones are trapped here but for the most part staying either in their rooms or hiding behind a video game screen.

Every day is the same as we try our best to all take care of mom, while terrified to leave the house as she cannot see and struggles due to breathing issues to get from one room to the other at times! She puts on a super brave face for everyone out of fear that she is letting someone down. But in reality she is in more full body pain than any of you could ever imagine! Her ribs are broken (yea that’s right broken) from coughing all the time, her feet and legs swell up as she can no longer adequately move fluids throughout her body as I said before she is blind and don’t let her bump anything as even a pencil size eraser bump will turn into a dinner plate size bruise and sometimes those bumps will break the skin which leaves blood everywhere!! So tell me, please, what God would do that to a person??

I hate being at work, and I hate being at home! I want our life back! I want her life back! Hell I would trade places with her in a minute. But we all know how stupid that sounds because it is an impossibility!

I wake up each morning worried something is going to happen to me! Seriously, what if something happens to me? Tell me I am wrong at how scary that sounds! You can be honest, I won’t hold it against you! But think about it. You wake up every day and you are it! The sole provider, the sole parent, the sole caregiver (that she trusts) at home, and you feel as though you cannot take any more, but for some reason it just keeps fucking coming!!!!!!!!!! Just because she is sick and dying doesn’t mean the bills stop, or the debt goes away, it doesn’t mean the kids can just automatically accept that dad is now the end all be all for parenting, it doesn’t mean the ranch will just run itself! No it’s all on me! Fucking Me!!!

You know what is even funnier? Come on, guess what’s even funnier???

Through all this, I am supposed care about your emergency when I show up in my fire engine!!! Don’t get me wrong, I do, I still give it 100% when we pull in front of your house, but please forgive me if I am not as excited about your papercut, vomit, alcohol laced sickness or cancer that you thought you had but really didn’t because you were misdiagnosed during a DMV physical by a third party doctor who swore you had a pacemaker which you had no idea you needed due to a history of diabetes that runs through your entire family but missed your third cousin Billy.

Yeah……

Still here?

Sorry I know this was supposed to be a talk between you and I and it has instead turned more into a rant. I never meant to bring you any worry or discomfort, I hope you can forgive me. I am just tired, really, really tired of it all.

Deep inside, I am struggling hard. I wake up every morning and stare at her to see if she is still breathing. Somedays I am lucky and she is up, fumbling around in the kitchen making coffee, other days she looks dead to the world and I freak a little. Every day is spent in the house trying to keep up. I no longer know which way to turn.

I feel as though there is nothing positive going on in my/our lives. I have a career that has been placed on hold for 5 years now and I feel it slipping away. The horses and the ranch are barley getting by and I have other people riding our horses as I cannot even throw a leg over one. I am struggling to find joy in the little moments with our kids as those moments are few and far between plus when the times are good there is always a backhanded slap from something that goes wrong when we get home. I feel myself aging at a rapid rate and I fear death may find me soon too and that scares me the most. Eventually losing their mom then losing me not to long after. The thought of my kids having no one when this bell is finally rung is petrifying.

I have always tried to make light, be funny, show anyone that will listen that no matter what, you can get through anything. And now I feel like a hypocrite. For I have nothing positive to say, no words of wisdom, no stellar advice.

All I hear in my head is the sounds of sadness and quote from long ago.

People die every day, what are you going to do about it?

Answer: Nothing.

Thanks for taking the time to listen.

 

 

 

The Face of Leukemia belongs to another………

Oh god! It’s happening right now!!! It’s happening right now! Oh my god, oh my god, holy shit, I’m not ready, or lord I’m not ready!!! Please don’t go, PLEASE DON’T FUCKING GO, YOU CANT LEAVE ME, YOU CANT LEAVE, PLEASE BABY PLEASE D O N ’T  G O…………..

I… love … you….

Time of Death (TOD) 12:10

Date: 10/20/2018

No it’s not a reality show, or some made up Holly wood bullshit and I am not writing a paragraph for some future best seller!

It’s the playlist running through my head every day since my wife succumbed to GvHD or Graft vs Host Disease one week ago. GvHD, a nasty derivative of a Bone Marrow Transplant post Leukemia diagnosis.

I have been a firefighter for 23 years. Nothing, and mean NOTHING prepared me for those 30 seconds as I watched the woman I loved, cared for through sickness and health, good times or bad, take her final, gasping, breath at 12:10 on a bed she made me swear she would never be in (hospice provided hospital bed) in the transformed living room of the place she loved more than anything-her home.

I cannot even begin to tell you the number of people I have personally witnessed perish. I cannot tell you the number of people I have personally watched suffer in agony as the one they loved slipped away. I cannot tell you the number of times I drove back to the station after an incident, filled with sadness for those people and sluffed it away with humor or companionship from my fellow co-workers.

I cannot tell you how badly all of it hurt and came to a head at 12:10 on Saturday the 20th 2018.

The storyline if there was one should read: quietly I wept by her side knowing she was in a better place, free from pain, one with God. I took comfort in knowing these things and because of this knowledge was able to open up and allow others to grieve by her side.

But this isn’t a storyline! This is my life..

If I hadn’t been in a chair, I would have fallen to the floor, If my sons hadn’t been by my side I would have crawled under the bed, but make no mistake, I wailed, I sobbed, I kissed her face, over and over, and over again, just praying for one last look, one last mumble, one last anything.

There was nothing. She was gone, I was crushed, my heart is consumed with pain, I feel immeasurable guilt for the multiple hours she spent alone, trapped in this house as I ran from one place to another, and the thought of living life without my center, my navigational north by my side is unbearable.

Today is the one week anniversary of her death.

I have made it a week. The house is empty, oh so empty. I still am not used to the silence associated with no medical equipment running, no sounds of her coughing or calling my name for assistance. I need more than anything to hear her making dumb jokes, asking if I think GvHD has made her sexy or wanting nothing more than a cheek snuggle. I pace around in the morning early, trying my best to fight the urge to go downstairs and check on that fucking empty room.

This is NOT how she would have wanted me to be. I sit in her room and tell her I am sorry, I tell her I promise as time goes on I will get stronger, but right now I am mourning. I have come to realize I am not mourning just the loss of my wife, my best friend, a person who gave so much of herself to those around her which in turn made me a better man. I am mourning the past, the five years lost, filled with sickness, Stanford, Kaiser and such. Date nights, alone time, reconnection, weekends, and walks around the property, loading up and taking horses anywhere or nowhere at all. I am mourning what we didn’t have for 4 of those five years. I am mourning what we will never have again. I am mourning for my children, for my grandchildren and that is what hurts the most. That woman lived for babies, for being a presence in their lives and the thought of my grandchildren never meeting their goofy, fun loving grandmother. The thought makes me sad, so sad, as if I am drowning in a perpetual sea of sadness.

I am sad my son’s wives will never know the true unfiltered love of a mother in law with no agenda. I am sad my daughter won’t have her mother at her side on her wedding day.

And I am angry.

The hardest part for me is why? I am not supposed to know the answer, I am supposed to believe and follow faithfully. My faith has always been strong. How many times must a man suffer? How many times must a family suffer? What is it I am supposed to learn from all of this?

My whole life I have wanted nothing more than a family, to marry, grow, and together step through the seasons of life. To celebrate 50 years of marriage, to celebrate weddings, anniversaries, births and birthdays. To have a ranch where they all come together with their children built upon the seeds their mother and I threw into the mix. To die an old couple knowing we did our best, grew our crop and watched it flourish to harvest together.

To pass on our love, compassion and set an example for our future Franceschi generations.

I have been robbed, she has been robbed, and our children have been robbed. For that I am angry.

She would tell me to knock it off! To not be angry, we all knew this was a possibility, that she did this for no other reason than to be by her children for one more day, to hear their voices and feel their presence for one more day. She would tell me she succeeded and that it quite simply was time to go. She had a funny way of always knowing. She just had a way. I loved her for it.

Right now, I wish she was here, for 7 days later, I really need her to help show me the way…

The Face of Leukemia now belongs to another.

Picture taken at 11:30 am. 40 minutes before she slipped away.

I am not fine…

I am not fine.

There it is, I said it. It has taken me a long time to come to this conclusion. But, I have acknowledged it, pulled it out from under the emotional rock it was hiding and verbally stated its presence.

I am not fine.

There are many reasons I am not fine, and it’s not a simple answer to the question of why? But it is a truth, a truth I have been hiding for quite some time now.

I spent this week in San Diego as a participant in a Health and Wellness for public servants seminar. The first day started with an amazing opening speaker who really inspired and justified my resilience in accepting this time away from Jacy. After that it was a lot of the same old build up, and for us fire guys a reiteration that ICS should always be used while managing any type of incident. Including a mental health crisis. After 8 hours of what was new and interesting information for most and a segment of boring refresher for us fire people. I prayed the class would only get better. It did not disappoint.

Day two found us thrown into the emotional arms of a speaker covering the essentials of support, where that support comes from and what it looks like when built properly. He carefully broke down through his own experiences where we go wrong as public service personnel when it comes to identifying the who, what where and why of our foundations for strength while working these spiritually, emotionally and mentally taxing professions.

As he stood there expounding on his failures, the recognition of a skewed priority system, the ability to deny professional help after a triggered emotional event and the wall he built around him by simply stating he was fine when asked. It hit me, hard, like a ton of bricks that everything he was saying fit me to a tee. That I to have been pronouncing my resilience nonstop and answering every question in regards to how I was doing with the five year demise of my wife as I was “fine”.

But I wasn’t fine. In fact I had been living this lie for so long I actually began to believe my own bullshit.

You see in those few moments as I wandered in and out of his lecture, with every key point fitting me perfectly I knew it had gone on long enough. But where did all this come from? How did I get this way? Why have I been able to carry this load so well for so long and still be standing?

Day three gave me the answer.

During a transition in classes on day three, having freshly been removed from an hour long course on family crisis and the emotional well-being of children in regards to perceptions related to our jobs.

I received the phone call no one wants.

My wife, the love of my life, the strongest human being I know in this world was in demise. As many of you already know Jacy has been fighting a very long hard battle with GvHD post Leukemia transplant. The GvHD has won. We quietly placed her on long term hospice four weeks ago. Affording us instant access to RN’s who would come straight to the house when needed. Also giving me a strong base to stand on as I have been the head nurse to my wife for over a year.

 

 

 

The phone call went something like this: James, Hospice is taking Jacy off the Stanford medications, she can no longer swallow, or eat and really it’s about pain management now. She has but a few days.

Of course there is much more to it than that but this is neither the time nor place to run through her complete medical chart, emotional state or my irrational state of mind.

As of late I have been referring to myself as the air traffic controller of our family, that call was the equivalent of having a plane drop from my screen. Call sign, call sign, pandemonium and panic ensue.

Yet it was also in that moment, standing on a deck just outside the convention overlooking beautiful Mission Bay trying to keep it together as 600 hundred of my fellow public servants could see me from many vantage points I not only realized 100% I met every single criteria for a public servant-no a human being, father of four, dad, a fucking husband in distress and the honest recognition I needed help. Just like that, the clarity as to how I have been able to keep going for so long hit me like a brick.

My father.

My dad could drive me crazy! His self-righteous bullshit was always something I rebelled against! But since his passing here at the house almost three years ago I have come to realize that even though I fought against him so hard for so long there are traits he taught me that I carry proudly to this day.

Son; always put one foot in front of the other, life will knock you down but you need to keep going. What else are you going to do?

Of course in his later years he did nothing but sit on his butt and blame everyone and everything for his perceived failures in life instead of cherishing what was around him. This was also a bone of contention between us because I believed the latter and it made me mad he wouldn’t follow his own advice.

But here I was, overlooking the ocean, swelled up with a myriad of uncontrollable emotions. Not more than a few hours earlier I had been talking to one of my co-workers about how tired I was after five years and several Leukemia associated battles. Trips to Stanford, scares, triumphs, disappointment, doctors’ visits to Kaiser, Jacy crying in the elevator proclaiming she wasn’t ready to die, because she felt there was so much work left to do. It all has taken a tremendous toll on us all, of course no more than what it’s done to my wife.

The only life I have known for five years is that of a single parent (I fully admire all of you single parents) doing his best to get three of my four kids where they need to be when they need to be there, run our ranch, work my job as a firefighter, and care for my wife 24 hours a day many times with little sleep. I am blessed the most amazing support structure in Jacys family and with the assistance of our Gina I don’t know how I would ever have gotten it all done, but either way, yeah I was tired.

But what struck me, what really opened my eyes at that very moment was the realization through wonderful training that week, was that I hadn’t been placing one foot in front of the other for five years, no, no my friends. I have been doing it for 18 years.

 

 

 

I never dealt with or recovered fully from the loss of my first wife. I have been doing the emotional two step in one form or another for a very, very long time, affecting my personal relationships, my children’s ability to grow as human beings and my own self-care.

So yeah I am tired, I am so fucking tired.

But in that same instant, I’m not ready!

I am not ready for any of this, I have the skills to handle it, I have a complete support network in place to handle it, and I have the contacts to some of the best professionals in the business to handle it! All of that is something I didn’t have in 2001 when Kim died. I have been praying for peace for my wife, but her mind says she isn’t ready. I have been wanting to have a moment where I don’t need to worry about anyone or anything, but I am a man who cares deeply for his family, all of his family so that is not a viable wish. But I am not ready to say goodbye.

On the flight home I stared at the ceiling, I could hear my wife’s angelic voice in my head as I replayed moments from the past. It hurt because we haven’t had a conversation that was completely lucid in quite some time. I relived many of my favorite times with her and realized how much I will miss even the tough times. She is the only woman in my life who understood I never ever meant any harm when at times my mouth wrote checks I couldn’t cash. Which means she is also the only person who could ever call me on my shit without receiving the full verbal wrath of James Franceschi! Something I am always embarrassed by when it inadvertently happens.

I don’t do alone.

What am I going to do without her? Why is or did this happen? I have been so focused on keeping her alive that now as the time dwindles away I haven’t remotely considered how I am going to function without her, her strong willed personality, her gigantic kind, giving heart, her ability to coerce me into doing things or trying things I never, ever would have done or experienced completely against my will only to have me thank her for it afterwards. That larger than life smile, how will I go on without that larger than life smile in my life? How are my children going to function? Cody and Jake have been through this, they still have no idea what’s ahead, and they are quietly struggling as well but what do I say, what do I do? What is Jess going to do in a house filled with all boys, no mom to be there for prom, homecoming, graduation, and all the girly things that need to be addressed in the way only a mom, no, only my wife can do! What about Parker, why is this happening to Parker her only child? She fought so hard to bring him into this life and now she won’t be there for him either!! She is his everything!!!

Listen, I understand I am not the only person in the world this has or is happening too. But what the hell???? Why is this happening to me twice and how in the fuck do you justify taking away quite possibly the kindest most giving person I have ever known. Why not me? I have spent my life as an asshole, isn’t that the way it’s supposed to work???

 

 

 

Jacy Mirelle Glenn Franceschi answered a call 16 years ago. She fought hard against all odds to answer that call, fulfil that vision and she has without question made me the man I am today! Something I am so, so grateful for! She fought long and hard, working night and day to create the James Franceschi that sits here typing, wondering why? Is God saying her job is done and if so couldn’t he have found a different, less painful and disturbing way to tell her?

I love, love, love my wife. What am I going to do the first morning I get up and I don’t hear; Good morning my love as I grumble across the kitchen floor and make her coffee and breakfast? That first morning the kids don’t yell goodbye mom see you after school, hope you feel better today, while she does her best to respond with: have a great day! The first time her hospital bed isn’t there, the oxygen machine isn’t running, the doorbell isn’t ringing with medication deliveries and the house is cold and empty as if she never existed? The house she created, the home she filled with warmth and love, the ranch we tried to build together???

WHAT KIND OF FUCKED UP SHIT IS THAT??? MY BEST FRIEND IS DYING SLOWLY AND THERE IS NOTHING I CAN DO ABOUT IT!!!!

I’M NOT FINE, THERE IT IS, I’M NOT FUCKING FINE!!!

8 Heads in a duffle bag..

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…..

God, could I get a little help? Please……

I have a confession to make.

I think I am mourning the loss of my wife.

Over the last couple of weeks, the two of us have held some very emotional and poignant conversations in regards to her health, my mental health and our families future.

She is by far the strongest woman I know. Her courage and tenacity is second to none. This shit sandwich she’s been handed and forced to eat time and again would leave most average humans gagging while pleading for the feeding to stop. Yet she bites down, grits her teeth and trudges through every mouthful!

I try to remind myself that God will never give us anything we can’t handle.

The other day during a conversation with her doctor she told him she’d had enough! It was time to either get busy living or get busy dying!

Think about that statement! A mashing of words spoken with the seriousness of an appellate court judge! No bullshit, no grins or giggles, no carefully chosen not wanting to hurt anyone else’s feelings words! This is a line in the sand and no one had better fucking cross it! For the first time in a long time I didn’t laugh, find a joke or even smile a nervous smile. She was making a stand and if you truly know my wife then you know never to cross her when she makes a stand!

And I think once again: God will never give us anything we can’t handle.

The last couple of days have been harder then normal. My irregular heartbeat is back, (which always leaves me panicking) my stomach is on fire and the head is pounding pretty hard. These are all secondary reactions to an emotional outpouring trapped deep within this sack of skin. I don’t know how to adequately express what I’m feeling or even describe it’s magnitude which tears my innards apart! Three long years I have been holding it together! Three long years I worry about tommorow and what it may bring! Three long years have been the worst juggling act I could ever have performed, always feeling like I am one hand movement from dropping all the balls.

Three long years and I continue to think: God will not give us anything we cant handle.

In that time I have gained 25 pounds, developed sleep apnea which leaves my chest and head hurting every morning and I have cried more times than I care to remember! Seriously cried like a baby! I’ve cried in the truck, the barn, while working a horse, after waking up from a nightmare to find she isn’t there only to quickly realize she’s at her dads for treatment! I have cried while blogging, in my dorm at work, after a call with a cancer patient, while reading a book and even while taking a shower.

To be honest I cry at everything nowadays! Like some stupid, weak, lovelorn teenager!! Show me a stupid animal video! Hell here comes the waterworks! A love story movie. Tears! Wedding videos! You guessed it more water!! And you know what makes it even worse?

I am angry as hell, looking for someone to blame and yet I continually tell myself; God will not give us anything we cannot handle!

That anger leads me to yell at our kids way more than I should, I yell at drivers on the road and sometimes I daydream someone will cut me off so we can fight! Senselessly hoping not to win, but instead to feel the stinging pain of loss. I know it’s wrong and because I know it’s wrong I work really hard at tempering my emotions!! But this long term tempering is wearing me the fuck out!! All political rants get deleted from my FB feed so I don’t get angry. If an argument starts I do my best to walk out of the room or tune it out by acting dead or stupid, much like a fainting goat! I have figured out how to curb all this anger when cornered by using a tried and true method of striking first with wicked biting sarcasm! But sometimes that bites me in ass when I take it to far and then hurt someone else’s feelings! I can’t win! Developing these weird coping mechanisms are only piling more worry and angst on top of an already over loaded emotional mountain! Yet I keep doing it because going through this joint struggle over the last three years I have found there are more important thing for me to focus on in life! Like waking up, or breathing!

And there I am wondering if God is really giving me what I can handle or if it’s all a big fucking lie!

Today really brought it home for me and it hit me harder than before. A friend posted a picture of my beautiful wife from five years ago and through all my inspirational quotes, kind words and such I realized why I am in this strange place mourning for the loss of my wife. Not that she is gone in the traditional sense of the term, because she obviously isn’t, but for who she used to be! That woman, that confident, beautiful woman who could teach 30 kids in classroom, come home and ride horses with me and the kids, whip up a dinner from absolutely nothing, then toss her hair into a pony tail, throw on some clean clothes and let me strut her sexy ass out on the town!

I hate what the drugs have done to her, I hate what this disease has done to her, I hate that everyday she wakes up and no longer recognizes the person looking back in the mirror and sobs. She’s had me cover all the mirrors in the house so she doesn’t have to look at herself and that makes me mad at God. I hate that she shakes so bad she can’t hold simple items and there is nothing I can do help! I hate that she struggles to get up, walk or climb stairs! She was once a toned, hard fitness instructor and now is a frail version of her former self! I hate that I feel like I am failing her, and I can’t do a thing to make any of this any easier in any way! I hate that she doesn’t know how beautiful I still think she is or how she continually stresses over some imaginary thing that should drive us apart!

I hate, I’m angry so I hate some more and I think again; God will not give us anything we can’t handle.

The realization that I am also mourning the loss of OUR life together weighs like an anvil around ones neck. I go to parent meetings alone, doctor appointments alone, after school activities alone and rodeo with the kids alone. She is miserable because she can’t be there for her children and it is a horrible heavy guilt for her and I am torn up because I can’t imagine how that must feel as a mother. Now, I don’t mind being alone, it’s good to be alone every now and again, just not all the time. Thankfully I am surrounded by some of the most wonderful, caring families anyone could ever ask for and they treat my family as if we were part of their families! Rodeo families are hands down the best in the whole world!!! I seriously look forward to seeing these people every month! But at the end of the day, when everyone goes there separate ways, I sit alone, in the trailer, pondering what life would be like, if Jacy had never gotten sick. All of the fun she is missing out on and how guilty I feel when I forget for a moment and start to have fun myself.
Then I’m mad it’s not me. Jacy is something special. I am not. She has done almost everything right her entire life. I have not, in fact I spent most of my early life doing just the opposite. She is kind to everyone, I can be a bit of an asshole. So why? Why has God burdened her with this punishment and left me alone? Why is God putting this upon our family, our children, our friends and relatives? Is it truly because God thinks we can handle it? What kind of bullshit is that? Does that mean people who hold no struggles are weak in Gods eyes so they get a free pass?? That makes no damn sense!

I always say we need to have faith. Believe in our faith. I believe in God. I believe there is a reason all this is happening. I believe we are being tested. I believe there is a plan and I hope God reveals it soon for as of now I can no longer see the Forrest for the trees.

The fact is pride is what leads us to believe we can conquer all without help or faith. It is how this simple statement I have repeated and lamented over continues to come forth.

“God will not give us anything we cannot handle.”

In reality it reads: No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.” (1 Corinthians 10:13)

The way I read this is as such: God WILL give us all more than we can handle. He will challenge us, challenge our ability to retain faith and he will forgive us our temptations.

I believe my faith is strained right now. I believe we (my wife especially) have been given way more than we can handle. I believe the temptation to just quit is great.

So…..

God, could you give us just a little help? Please….

I’m not sure how much more of what you are giving us we can all take.

(Fuck I’m crying again)

Jacy Update; One year later.

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!

 

 

 

 

 

I can’t…

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….

 

 

 

 

365 days

One year-365 days

The day before yesterday I awoke to my phone buzzing incessantly on my leg. I had traveled back to the firehouse for an emergency recall as emergency units were fighting a stubborn structure fire and additional manpower was needed for daily operations. After changing into my uniform, checking the operations board, determining who went where and why. A moment came where I dropped into a chair to catch a minute while enjoying the air-conditioning. It is the last thing I remember. That is until my phone started buzzing upon my leg.

Answering it, my wife started talking and I quickly realized I had no idea what she was saying. Not only did I have no idea what she was saying but I didn’t know where I was, who I was, or why I was sitting in a chair inside the firehouse. I panicked and thought shit something is wrong, why is she calling? She is at the hospital what has happened? Is it bad news? Is she ok and once again, HOW THE HELL DID I END UP AT WORK!!! Had I been there for a couple a days? Was this my shift? CRAP!!! I was lost..

The entire time my inner self is freaking the hell out, my wife is simply asking me when I am coming home for dinner? When I didn’t answer she would simply ask me again.

This morning when I awoke to head off to work, I awoke alone. Seeing no one there, I panicked for a second, took a breath, cleared my eyes then remembered as I have reminded myself on multiple occasions she wasn’t in the hospital. Odds are she is probably downstairs in her recliner after another long, horrible, sleepless night filled with coughing and pain. Instead watching Netflix with her headset on, and most likely snuggled up in a blanket trying her best to let me sleep.

A year ago Jacy received a bone marrow transplant. Today, according to BMT lore is her new birthday. A new birthday is given to every transplant patient upon receiving their transplant. This transplant saved her life. We are, and will be forever grateful for such a generous, selfless gift given without hesitation by a person we have never met. Modern medicine is amazing and I find myself in awe at what these treatments have afforded our family.

But it has not come without a cost.

I wake up disoriented and confused all the time! Exhaustion is a standard of living for me. I can’t fall asleep until after midnight. I fill my time doing laundry, cleaning house or simply watching television while she lays beside me. But even then I am watching carefully, listening to her breathe, judging her every movement. I do my best by allowing her the freedom to make decisions on her own in regards to her day, energy exertion and tasks she wishes to complete on her own. Never overstepping my bounds but asserting myself when I think she may have done too much or is planning to take on more than she can handle. Of course who am I to say what she can, or can’t handle? This is Jacy after all and she is going to tell me what she can or cannot do. Then when things don’t go as planned I just smile a sly smile and without saying; “I told you so”, help her get to where she needs to be. Most of my days are spent working outside for a while, then coming inside to make sure she is surviving and comfortable; certainly being inside also has to do with the current heat spell we are experiencing; trying my best to get the hard stuff done before it becomes too hot. In the morning I generally awaken at first light, toss and turn, trying to sleep just a little longer which may or may not get me to 0630. Then its coffee with the wife and my day begins.

It is as though w have Bone Marrow Transplant PTSD. I panic at anything in regards to her health, position, status, whereabouts, etc.. It is hard to love someone with all your heart, be their caregiver, take care of children, work, run a household and ranch all while trying to remember it is all going to be ok and you should probably take a moment or two for yourself.

The phone calls, updates, a year of hearing it’s all going to be fine then 5 days later you are signing DNR paperwork. The next weeks prognosis is good, but a few days later she is back in ICU. She is going to live, she is going to die. She is a miracle from GOD, she praying to GOD. She is kissing her children, she is praying for one more day with them. Doctors patting you on the back and smiling. Doctors patting you on the back while they sit you down to explain some very serious complications. The amazing amount of time you have, alone in your car, traveling 2-3 hours one way, hoping to spend more than a couple hours with her awake, knowing it is not her fault as heavy medication kept her from any form of alertness.

For a year I have watched the very same medications saving her life wither her body away to nothing. Taking away muscle and tone she worked so hard for so long to achieve. Leaving skin and bone in its aftermath, tearing away at her self-esteem. I have watched as hair has fallen off, skin has flaked away leaving lesions, blotching and discoloration covering her body. I have held her as impaired vision causes her pain, balance issues and nausea.

She cries a little each time we go back to Stanford, afraid some nurse or doctor will admit her. She lives in constant fear that if she does get sick she is doomed. She has mini panic attacks when calling her doctor or making an appointment for the same reasons. The slightest sniffle or cough leads to worry as a fever or discolored sputum brings doubt as to her overall health.

A year has gone by and our children are no longer the same. Learning about life and hardship, struggle, pain, sickness and survival. They will never look at a hospital or doctor’s office the same way again. Our youngest feels that if you go to a hospital the odds of coming home right away are very slim. They no longer know the mother who rode horses, or played sports, gardened and ran the perimeter of our property. No a year has gone and with it all expectations of normalcy.

But I am not writing this to be a downer, because although it has been an extremely difficult year and continues to bring struggles to our family, it has also been of year of immense growth.

365 days of love, caring and a town that never quit supporting our family. Never did I have to worry about whether my children would have a meal, or a place to go hang out, friends to play with, or a parent to help them. My oldest learned what it meant to be a BIG brother. Not just their brother, but one who cares for them, keeps them safe and ensures they stick to their schedule. We are pretty sure they also ruined him for ever having children.

Those children who can’t play soccer, go camping or ride horses and bicycles with their mom anymore have instead learned the importance in taking care of another human being. They have also through helpful guidance from myself and their older brother (as mentioned above) learned how to take care of themselves. Has it been perfect? NO! Have they all made mistakes, some larger than others? YES! Have I screwed up numerous times trying my best to parent from afar while at Stanford? HELL YES! But after this bout of family struggle in their lives I have no doubt our children will grow into fine adults who will undoubtedly help others along the way. Something (compassion) a parent wishes for from the time their children are born. Do our children want things to be the way they were before? YEP, but they also know we cannot go backwards and though it has been challenging they are ready for whatever lays ahead happy with the knowledge mom survived and mom is home.

 

Those medications her and I despise are keeping her alive and with each day comes another opportunity to interact with not only her family, her children, but her friends as well. She still feels as though there is work here on this planet for her to do and although each day taking 23 medications three times a day is a struggle. It is a struggle worth the price. I remember her saying one time that if GOD would grant her the ability to survive she would be content just watching her children grow from the comfort of her easy chair. We all know that isn’t enough for our Jacy and it really doesn’t matter what those medications have done to her outer appearance. The inside is still the magnanimous, charismatic, hilarious, moody, determined, intelligent, caring, loving, the woman we all know. That my friends is all that matters. A teacher once asked me; what will you do when your looks are gone? I can say without a doubt that if we have the love of family, friends and most of all ourselves. Then looks never really mattered anyways did they?

As far as constantly being exhausted, worrying about everything from my wife, to our ranch, long term finances, our children’s welfare, work and beyond? It has been a reality check, and a very long exhausting two years. From first being diagnosed with Leukemia to her having the Bone Marrow Transplant. I am tired, so very tired, I am overweight and I don’t feel all that great, my inner confidence is waning and some days I feel as though I am drowning. But I also know this is exactly where I am supposed to be. I married an incredible woman, God gave me a second chance at life by introducing us. It is within our nature as human beings to complain and as much as I despise complaining I have done it a time or two, or three, ok maybe half a dozen, yet I wouldn’t trade anything. From the moment we met we both knew we were meant to be together. We both heard and felt a higher power formulating a plan while drawing us together. When we married, she began working to make me a better person, not because she had to, but because you just naturally become one once you are around her. Trust me, I didn’t always like it, we sometimes fought over it as I raged against change. But without her, I am not sure I would be who I am today and for that I am thankful and she deserves all the love and devotion I have to give. So a little exhaustion is fine, some residual hospital PTSD is ok and at some point I am sure I will stop feeling exhausted or falling asleep the moment my body quits moving.

But in the end, as tired as I am, through all the hell our family has been through, thanks to God, great friends and family along with Jacy’s incredible will power, she is still here on her new birthday, and for that I will be forever grateful.

kids

 

 

 

Oh how the wheels turn…

I knew this time was different when we pulled into the entryway. A dozen or so cars all waiting to either move or be moved, patiently we sat in silence. As we made our way to the front of the line you could feel the tension. Slowly crawling to a halt, she simply looked at me, opened the door and quietly muttered; I’ll see you in a bit, I love you.

Jacy hadn’t been feeling good. She always has a cough, has had one since January 2 when she was released from Stanford and sent home. It is associated with GvHD but as of late it has gotten stronger and raspier. Several nights she spent coughing, tossing and turning, not only to the cough but a stomach ache, headache and over all exhaustion. The type of exhaustion that actually leaves you wide awake, praying for sleep, any sleep to come and come quickly. Each rising of the sun signaled defeat for her and mentally it was taking its toll.

Then came Monday night.

Monday she awoke with a fever. A fever is fine, it means her new immune system is trying its very hardest to work. A fever over 100.4 is bad! It signals her system is about to become inundated, unable to handle whatever is causing her grief. She hovered all night at 99.8/99.9 worrying it would tip the scales against her in which case we head straight to Stanford, do not pass go, do not collect $200.00 dollars! (Sorry for the monopoly reference)

It was a very long night.

It took quite a bit of hounding only because my wife is super stubborn but I finally convinced her to call her doctor. Jacy’s stubbornness is not born out of neglect for her own care but instead out of fear! Fear she will walk through those large glass doors at Stanford and be held prisoner for another 8 months. She has bad dreams where she is back and they won’t let her leave. Crying, sobbing, and pleading to just let her go home. This of course is no reflection on the care given at Stanford! Quite the contrary, there is no other place she would rather be when in need. The staff is amazing and we still cannot say enough about the nursing care. It is derived from an imprisonment away from life and her family for which she nor anyone I suppose could ever have imagined! 8 months is an eternity.

Once she put down the phone I knew instantly we were headed back. They promised it was just to check her out but as that little voice in the back of your head tells you; there is more to it than that!

The next day somberly we loaded into the car. Jacy tried her hardest not to cry as we crept out of the driveway. Looking back as our place grew smaller she withdrew, finding something on the radio so as to not talk or focus on the unknown. It was the longest 2 ½ hour ride ever.

I’ll see you in a bit, I love you.

The door closed, I pulled away heading towards the parking structure two blocks away. Walking back I kept telling myself it was going to be an easy fix, they would give her some medication and send us home. (Of course life experience told me different, it was just easier to play dumb and lie to myself.) No stay, no hospital and no more fear raging deep inside. Apparently I have Stanford PTSD for as I walked closer to the building my chest tightened up, my heart rate accelerated and it became hard to breath. Why? Because deep down inside I knew she was going to stay.

Once inside I found her room, testing had already begun. Doing my best to make her laugh, we once again found the Stanford staff to be exceptional. Killing time while we waited I turned on the SF Giants game, they were facing the Atlanta Braves, it was a nice distraction as it was the first time in forever we both were able to sit in the same room and watch the game together.

After a couple of hours, with a chest X-ray under our belt it became apparent they were going to admit her to the hospital. Jacy’s oxygen saturation levels were extremely low which explained her need to sleep for what seemed like 20 hours a day. This news was of course devastating. Jacy kept insisting we could go home and come back the next day, but there was no way they were going to let us travel with her sat numbers so low. We also had another issue. Where to put her. Stanford was at maximum capacity, as in no beds available! The suggestion came down to place her in the Emergency room until a bed could open up. This was not going to happen! The consensus was she needed an isolation room as to limit her exposure to any germs or viruses, yet placing her in this (ER) contaminated place was the answer? Uh NO!

Repeatedly her doctor reaffirmed she would be moved as soon as possible. Jacy would look at me and just as quickly I would reaffirm my stance which was indeed our stance of NO. We would drive home, take the two hour risk of low O2 numbers until she could be hooked up to her own oxygen machine over being left in the ER for who knows how long. The doctor very politely took a stronger position trying to explain all the associated risks for which we already knew, but we held our ground. Isolation room or we go home. What she didn’t know because I am not one of those people is; because of my job I already knew the risks, knew the low percentage of something dire actually happening and had one ace in the whole. There (an exaggeration) are like 92 fire houses between here and home that at any moment I could pull into and receive instant care for any breathing emergency that might arise. But I was extremely confident considering her presentation that would not be an issue.

Jacy’s nurse came in 30 minutes later to have her verbally state her stance or refusal to be sent to the ER for which we chuckled as you could plainly see he was working on a plan. There just seemed to be a gleam in his eye that showed he was up to something good! And he was! Long story short, our nurse pulled some strings, made numerous phone calls and worked it so after the ITC (Infusion Treatment Center) was closed Jacy could stay in her little room until an isolation room opened up in the main hospital. He stayed behind on his own, after everyone had left to ensure she didn’t get moved to the ER. He was incredibly caring and amazing. Once again the staff of Stanford inspires me.

We arrived at noon and now 10 hours later, Jacy was in her own room, terrified but understanding of the situation. She had already received her first doses of medication and was getting ready to start another round. The treatments were to be every 8 hours for a couple days. When I walked out the door to head home at 10:30pm I was both relieved and sad. Relieved she would finally get the care she needed to breath properly again. Relieved she was being examined for any other complications or hidden problems that may arrive, relieved that she was in the very best of care, relieved that so many people care about my amazing wife. Sad that we were here. Even though I knew when we walked out in January we would not do so unscathed. Sad that I was walking these halls once again, alone. Sad that I was driving home once again, alone. Terrified once again of the unknown and sad that our children were seeing mom disappear once again to be left alone.

Thankfully, we are a tight family and we have faith to keep us strong.

 

UPDATE: Just received the phone call!!!! I am headed to pick her up right now. She is coming home! Her voice sounds great! Her lungs sound clear! Prayers, good vibes, powerful thoughts of positive energy all worked yet again!!! Another obstacle hurdled!!!

6/4/2016 @ 11:00 am