The sounds of silence and where do I go from here?

Sitting at her desk this morning trying my hardest to focus on the 6 millionth start to a book I have already written, something comes to mind. It is lonely. So very lonely and it’s not a lonely that can be filled by friends or family, a phone call or a letter, facetime or actual conversation with well simply anyone.

It is the lonely that comes from silence.

You never realize how noisy your marriage is until it’s over. All the little things like you hustling trying to get kids out the door, her making lunches or singing in the kitchen to a song on Pandora using made up words because well it is the morning and she knows it bugs the crap out everyone so they move a little faster while she smiles with glee. It is hearing her use the damn coffee pot you hate because you own a Keurig and she simply likes the cheapness associated with a standard coffee pot. Her humming I love you as you walk out the door reminding her you’ll be home in an hour. She says she knows but you never know what can happen and she just wants you to know how much you mean to her.

It really is all the little things. The little things that make up the white noise of a relationship.

I woke up this morning and my dog had climbed onto the bed. He was asleep with his back up against mine and in the haziness of first awaking for a second, one split second I thought it was all a bad dream. 5 years a bad dream! It wasn’t, I was still alone, Jacy is still dead. In reality we hadn’t slept together for almost a year. She needed to be downstairs and with her being up all hours of the night depending on where she was with her meds and her constant need for sound (something she had before she got sick only more intense as time went on) the only way I could achieve even a few hours of sleep a night was to retire upstairs. I regret that decision now. I guess in a way it was preparing me for the future. None the less I have fully determined I hate sleeping alone. Oh well, guess I will have to get over it.

The white noise is everywhere.

I will never come home to the joyous sounds of her playing the piano again. She was never taught how, she played the flute, but her understanding of music made it easy for her to adapt to just about any instrument she picked up. I hate looking at that fucking piano.

Walking through the door in the afternoon to smell and hear all about some god awful concoctions she was creating. Foods or flavors that should never and mean ever be associated with each other, but there wasn’t anything left in the fridge so out to the garden she went and viola we have dinner! The funny thing is with only a few minor exceptions, even her craziest of Top Chef mismatched masterpieces all tasted great! I really am missing that right now on a cool fall morning.

The sounds of her painting or creating leather work. She was blind, but would sit at this very desk and create pieces of art out of whatever she touched. I made her a board from scratch to adjust and hold her leather while she stamped it or painted it slowly with one eye squinted shut and the other double focused on her work. The board is sitting here, never to be used again. I hate that fucking board.

Listening to her ask about the kids days when they got home, remind them of chores, reprimand them when they were jerks to her or smother them in love when they apologized. This whole thing has been so hard on the kids and I know they feel sad about each and every time they brushed her off as she was bedridden still trying her best to run the household. She loved them all so much and that love came out every day. The sounds of love bouncing from these walls, it has certain ring, a specific note when it comes from a mother’s perspective. It is quiet now; that sucks hard.

The permanency of it all is so overwhelming.

I know, everyone keeps telling me she can hear me, her love is all around us, it is in our children and the home we made. I know I simply need to talk with her, or I guess to her because she really can’t talk back. I stare endlessly into this room I created, I hear the oxygen machine still running or the lack of it, I am not sure. I wish I was still bleach mopping the floor while she incessantly apologized for all I needed to do to take care of her. That always bugged me, I would snap at her and say to knock it off! I would tell her I loved more than anything on this earth and there is no place I would rather be! I would kiss her on the forehead, then make her lunch, sit in the chair at the end of her bed and stare at her. Worried this day was coming.

In reality there was some other place I would rather have been.

Back in Alaska on the cruise with her! In Mexico, on the beach with her! In the mountains, hiking with her! In our own backyard riding horses with her!

I would have gone anywhere or done anything with her! Even if I didn’t want to. She just had a way of always convincing me to go and really, if you knew my wife or spent any time with her you just knew what ever her exploits were it was going to be one hell of a good time!

Besides that woman could convince a police officer to rob a bank, a hooker into becoming a nun, or the wealthiest person in the world into giving away every last dime. It just is who she was. I seriously am going to miss that I think the most.

So yeah, the silence is killing me, crushing me, it is hard to breathe most days. I am trying so very hard and it really is so nice how strong everyone believes that I am, but I don’t feel strong, I feel, I feel, I think I feel cursed. I feel as though there is some kind of vendetta against me. I feel like a permanent black cloud. I feel like loneliness is my calling. I hate being alone.

Jacy would tell me that God has a plan for us all and this was his plan. I remember her telling me through tears not more than 6 weeks ago that she wasn’t ready! She wasn’t ready to leave this earth, that she felt there was still so much work to do, so many kids to help!!! I held her while she cried and promised her if her time did come I would carry that work on for her.

I have always been a man of my word.

I am starting a scholarship fund in Jacy’s name for high school kids here in Dixon. It will benefit Ag kids because that is what she believed. We were able to secure a little over $700 on Saturday at her memorial by selling left over tri-tip. So we are up and running.

I am also looking into starting a foundation using Jacys Army as the name. It will hopefully grow and secure enough funding to become perpetual. The objective will be to assist families that do not have the assistance or support we were lucky enough to have while going through Leukemia treatment. This one was my idea and something my wife backed 100% as we talked discussed in detail the lack of assistance for families less fortunate as ourselves as we went through the process.

I also promised her I would continue on, that I would be ok, alone. I lied to her a lot on that one. Starting with day trips, new places and taking lots of pictures of my alone adventures. But I never wanted her to worry about me more than she already did, so I kept doing it even though I wanted nothing more than to be by her side. Ultimately it created a man who was quiet and walked a lot with his head down. She called them rest breaks or time away from caring for her. It was time needed there is no argument there, I put on a super brave face and sold it like a used car salesman, but it is coming back to haunt me now as I long for all those moments I missed with my wife. I hate myself for not being there, for distancing myself from family. But it is what it is I guess, no changing it now.

So instead of rambling on like an A-hole; I guess what all of this is leading to is this;

If you love someone, I mean really love someone!

Make every moment count. Even the little ones. Life is short, it can be taken away at a moment’s notice. I am blessed because we knew it would eventually come. But there are so many that walk out the door in the morning never to return again. Is that how you want to leave it?

Never stay mad at your spouse, no matter what. You have the ability to talk just about anything out and come to a resolution. I promise! I could make that woman spit hot lead, and she could make me flip a truck at times, yet we always forgave each other in our own ways. And yes, sometimes you need to recognize that not all forgiveness comes with an apology. Anyone who has been married long enough who reads this knows exactly what I am talking about.

Remember daily why you love them. Why you married them or are with them. Never forget that, they are special to you for a reason. Honor that reason and cherish it.

Never go to bed mad. Seriously it sounds dumb but it’s true. Every day truly is a new day! We are only given so many of those days so don’t waste them! Besides the snoring is enough on its own, so don’t find something else.

Enjoy every single little thing, from burnt meals, dirty clothes, dishes not done, to bad singing and even watching shows you cannot stand. The thing is you’re spending time together and that’s what’s important. You can never get that lost time back.

When the going gets tough, don’t even think for a moment about running away. If that’s what you’re thinking then in my humble opinion you never truly loved each other. Sorry but as my wife would say; the truth can be painful but in the end, it is still the truth.

Love is amazing, it makes us do crazy things. But the reality is love isn’t all the glorious movie tag lines or clichés we’ve grown up with or are led to believe. No my friends, love is all the messy and yes sometimes painful stuff in the middle. The rest is just the icing on loves cake.

Thanks for letting me vent all this out. I actually feel a little better. I am sorry if I hurt your feelings or made you cry. It was never my intention.

Advertisements

A million no mores………

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…

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..

 

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!!!

Let’s go, let’s show, let’s rodeo.

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….

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…

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

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.