Tag: Stanford Cancer Center

2019 I’m ready; so lets aspire to inspire shall we?

theycallmebetty1 Comment

Sitting quietly in a dark room, a flickering of light emanating from the television playing off in the distance dances across the somber mood in our living room. The Ball is about to drop ringing in a new year while saying goodbye to 2018.

I am pondering.

Life is a funny thing. Earlier in the evening I went to a friend’s house for a few hours to reconnect, feel a part of life’s tapestry and try my best to remember what life is like when lived. It worked, which is not what I expected. I laughed, hugged, lived and thought to myself on the way home about how much I missed this portion of my extended family. How many things we (Jacy and I) missed while she was sick and fighting for her life over the last five long dreadful years. And how terribly sad it was that she was not there with her million dollar smile, laughing, making new friends while smothering the old friends with love.

I came home early to be with my son.

Parker and I watched the ball drop together. We kind of chuckled at the horrendous attempt at entertainment the entire New Year’s Eve televised show had become. It was bad, really, really bad and to me showed what little value us as a society place upon ourselves or what we expect from others; but that is my opinion and for another conversation.

As expected at midnight the ball dropped, Parker stood up and said: well that was fun (sarcasm), hope 2019 is much better than 2018 for us dad!

I wanted to say; well it couldn’t get any worse!

But then I would be summoning the black cloud that seems to live over the top of us to rumble, crack and prove me wrong once again! Parker then announced he was taking shower; that he loved me and off to bed he strode.

I eventually went to bed, alone, sad, and wondering why? I knew why I was sad and alone, but why I should bother giving a shit was all I had left.

This morning while making coffee and wanting to write, I decided to look back at previous New Year’s offerings to see just what my advice or observations were for the coming years. Maybe that would help me to understand the why.

2012/13- it was all about resolutions. That’s right, I dug deep (sarcasm again) for that one and really hit it out of the park! Of course I had no idea what was instore for our family a mere 10 months later.

2013/14- I didn’t write a thing! You know why? Because I was knee deep in learning about Leukemia, treatments and how we as a family were going to tackle things head on! No mercy! It is the way this family has always handled adversity!

2014/15- New Year/New Fear. Living with the after effects of treatment, chemotherapy, and learning to live again for my wife. Understanding what it means to be in remission. It was a year filled with scares, and adventure. Jacy ran at it full bore because as I found out later, she knew deep inside but didn’t want to say it out loud that she felt Leukemia would come back.

2015/16- We focused on new beginnings, not letting this journey weigh us down, making the most of every moment because the truth is, nothing is guaranteed.  

2016/17- Handling ourselves appropriately. This journey was no longer about us, but how we could help as many people as possible by continuing forward. Both through my writings and her never saying no to any treatments. Finding joy in all the little things. Whether it be a week with some energy and no sickness to simply sitting in the sun with your children. My wife was an amazing human being and she continued to show her super powers during this dreadful year.

2017/18- This one was a little harder. I copied a portion of this former posting because I couldn’t accurately summarize my feelings.

Am I excited by the prospect of 2018 and what it has to offer?

No!!!!!

No I am fucking terrified of another year with more unexpected disappointment! Or maybe after all this time disappointment, disaster, despair should simply be expected and that’s why I am so tense! Wondering day and night as to whether or not there is more tragedy waiting for us just around the corner! I am constantly worrying about our future, her future, our children’s future and all the emotional toil our lives hold on a daily basis! I wonder if I can take on more. Is it humanly possible for me to handle another loss, another failure, another misfortune! Is there room for me to place more emotional unrest inside my soul?

I found myself mumbling; Fuck you 2018 every time I read someone’s cheery uplifting post today! I would start grinding my teeth the moment someone, anyone spoke of this dreaded New Year and it hasn’t even started yet!! That is just not me!!!

I want so badly to embrace this upcoming year, to feel hopeful, promise and opportunity! To know our future looks bright for all involved. But even as I am writing this my chest hurts, it’s hard to breath and the anxiety associated with wishing such selfish thoughts when I know there are thousands suffering in this world tonight. Struggling much harder than I. It is more than I can take right now. What the HOLY HELL!!!

Somewhere I learned the valuable lesson of keep your friends close and your enemies closer.

2018 you are not my friend, you are my enemy.

And there it is. It is like I knew or my negativity proved to be my downfall. I have had to read through the last five years while working on my book and it has been extremely hard. From 2012-2018 Heaven gained my horse Tank, Jakes Horse Twooey, Jacy’s Grandmother, and Uncle, my dad, a few friends and eventually Jacy herself.   

So what does all this mean for our family after looking through the past?

It means I am taking my own advice. Put up or shut up!!!

2019 you are not my friend, you are my enemy and the difference in regards to your arrival shall be that my tactics are changing.

I look forward to the upcoming challenges you present, my life will not be lived in sorrow or misery, it is not what my wife would have wanted for me and I know this because she made sure I understood the importance before she passed. She also knew it would take a while for me to come to terms with her passing, but she had faith I would or could carry on. She always had faith in me and that is something I cherish so very much.

After spending the evening a few weeks back with new friends, the holidays with our beloved family, and last night with old ride or die friends, it has come to my attention that now is the time. Her father sent me a video yesterday from his YouTube channel that really hit me hard. It was wise and insightful and I believe he needs to see I, his son in law, the man who loved his daughter more than I can ever show him, is taking it to heart. No more whining about her being gone. Oh that doesn’t mean I won’t miss her, or occasionally complain about it, or have terrible days for I know all too well they will come, when I least expect it, and it is 100% ok to let those emotions envelop me. Besides I don’t care who you are or think you are, a good cry now and again is good for the soul. But this family needs to look past all that and begin to live life again. We cannot besmirch her memory, her name, and her beliefs about family, life and love by wallowing in a wasted sea of tears.

Jacy Mirelle Franceschi showed me the meaning of love. She also showed me the meaning of life, living life, experiencing everything around you without slipping into the background. She showed how to make a new friend, to laugh or help someone to laugh when it’s needed, even if that means sacrificing your own dignity. She showed me the meaning of family. If you knew my wife, you knew exactly how important it was for her to have a family to call her own. She did, we loved her, and are forever grateful.

So, no, there will be no New Year’s resolutions, no pointless lists of things that couldn’t possibly be accomplished. Instead our family, my family, the family she loved and created are going to face this year head on! Not afraid of challenges, not afraid to explore, no expectations other than to walk out the door every day and live this thing called life to the fullest!

As I have said before, a mantra I have always lived by will surely be followed.

Every day you can get up, put both feet on the floor and take a step forward is a good day, a day to aspire to inspire.

So here goes.

Travel whenever you can, we will be.

Make a new friend at every opportunity, life is way too short not too!

Laugh, hard at everything, including yourself. Often!

Love with meaning, passion, and faith. To love is to be loved and I have been loved by the very best. For that I am both extremely lucky and eternally grateful. I still have so much love to share and so do you. Never forget that, ever!

Never take yourself or life to seriously. It just isn’t worth it.

Take time for yourself. Live, breathe and appreciate all this world has to offer.

And always take time for your friends and family. They are the most people in your life. Trust me after all of this, I know.

So come on 2019! Let’s do this! I am ready for whatever you have to offer. And if I am ever in question I will simply ask myself; what would Jacy do?

I’m seeing ghosts..

theycallmebetty4 Comments

Making my way through town I have always seen ghosts. Ghosts of incidents past rattling through my brain like an unwanted house guest! You know, wearing your wife’s robe and your slippers while they drink what’s left of the milk you needed for your morning cereal.  I have written about “them” these ghosts before, remnants of some of the worst things I have seen or participated in during my career. Who they were or are, how they have affected my current reality, and my inability to let them stay, well quite simply “dead”.

Last night I went to Vacaville to pick up tickets for a popular movie two hours early so the kids and I could go see it. Now if you know me well enough, then no need to ponder the movie. The answer is elementary.

Arriving at the theater, it is very obvious the movies are the place to be after Christmas, as the lot was full and I needed to park a block away. Walking up to order tickets a very polite young man behind the glass informed me they were in fact sold out for the night. Hands in my pockets while retreating to my car I heard a couple talking about heading to Winco after the movies.

Then it began.

I looked across the freeway, Winco hides on the other side and it dawned on me that Thursday was our Winco night. I could see her walking through the aisles, grabbing things and placing them close to her face so she could make them out, never ever wanting help unless she absolutely needed it because that tore away at her independence. We would slowly make our way from aisle to aisle and I remember that as much as I hated shopping ( I am a speed shopper, I know what I need and I haul ass outta there) watching the wonderment she held to each and every item she placed near her face always made me smile. It was like watching a child, or someone who had been in a coma for 30 years and just couldn’t believe all the amazing things that now existed! Winco was always a 2 hour affair and at that very moment I couldn’t believe how much I longed to go shopping with my frail, blind wife, spending those two hours together making our way up and down each and every aisle while she beamed with delight, thanking me over and over again for taking her.

UGH!

Vowing to never take another step inside Winco, I slid into the seat of my car and texted the kids; the movie is a no go, sold out, headed home. Then as I got on the freeway and began passing the Nut Tree area it was as if every single place we ever visited from the beginning of our marriage had a giant neon sign over the top of it flashing, brightly screaming that we had fun over there, we had date night right here, do you remember the time that this happened in this street and how you both rolled around laughing for hours!!! I tried to take it as good memories, something I should be so happy about, but instead it just created a bigger void, a tunnel of darkness that began enveloping me from the inside out! I couldn’t drive fast enough to get away, the signs wouldn’t stop flashing, I started breathing really hard and my chest hurt, I began sweating and I couldn’t focus.

Then out of nowhere!

That’s right out of nowhere I found myself in the Kaiser Hospital parking lot. I was parked in my normal spot. Yeah after you have been there a while you kind of pick a row and park there out of habit. Walking towards the building I had my hoodie pulled tightly down over my brow. I must have looked like the grim reaper as I made my way into the building. Stopping at the pharmacy I stared inside for a few minutes, reciting her medical record number then turning to make my way to the fourth floor. Exiting the stairwell I walked slowly down the hall, talking to her as I always had about how long she would be, did she want me to stay, cause I would stay and watch tv with her, should I go and get chores done, is there anything she needed me to pick up for her in Vacaville? All the right questions, praying I would hear an answer. Knowing there was none to be had.

Oncology, I stood in the threshold for a minute or two, still not quite understanding why I was there; then seeing the television was still on I sat down in the same chair I would always inhabit.

And there it was, right there for me to feel, my wife.

It was as if Jacy was sitting in her wheelchair right alongside me, I could feel her, she was talking to me, we had a long conversation about meds, her health and what lay in store. I eventually snapped from the same old topics we discussed and told her how much I missed her, how very lonely I am, how she was the very best thing that ever happened in my life and I don’t like not knowing what is in store for us without her. I told her I loved her so much and how I missed the touch of her hand. I asked her if she was ok. She just smiled, looking at me with her big beautiful eyes and said it was time to go. I asked her to please not go, don’t leave me again, she said; James, its time for my treatment and turned towards the door. She was gone.

And just like that I was back, alone in the very waiting room I had spent countless hours watching other people struggle with cancer while we were waiting for treatment.  

Walking down the hallway towards the stairwell, again slowly, hands in my pockets, hoodie still pulled down tight I felt heavy. No wheel chair to push, no bags to carry, no oxygen bottle to adjust, no wife whose shoulders needed rubbing, no best friend to reassure this was temporary, she wasn’t going to die, she was Jacy Franceschi, the toughest, most badass woman I have ever known and no amount of drugs or disease could possibly kill her.

I lied.

You can’t possibly know how that feels. To have lied.

She knew the risks, she knew what the outcome could be, she knew it all and she did her best each and every day for her family.

I still lied because I loved her.

I see ghosts everywhere I go, they don’t prepare you for that when you become a firefighter, but over time you develop the coping skills to understand it, to deal with it, to accept it when they arise.

No one can prepare you for the ghost being the one you loved more than anything on this earth.

No one….

Wake up, put both feet on the floor and take a step forward.

theycallmebetty5 Comments

The sun has risen, the sun has set, over and over and over again. For 4.543 billion years the sun has risen, the sun has set. Under its warmth or hidden in the shadows of the earths darkness lies the stories of roughly 105 billion people.

My story is no different from millions of others, I loved then lost, then loved and lost again. My heart aches as did the hearts of somany others. We all shared or carry the darkness that comes with such grief. I am not special, I am not different; I simply am.

So why can’t my brain accept this fate of mine? Why do I feel so much pain and anger inside? Why can I not understand this outcome, accept this outcome, and realize that no amount of anything is going to change this outcome; bringing her back?

Why do the people I love die? Why have they died for so many before me and continue to perish all around us or so it seems. We all know death is our fate, we as a society choose to look the other way, to ignore its significance when it comes to ourselves claiming it will never happen to me or standing by the adage of when it’s your time, it’s your time.

She (Jacy) always knew she would die young. She always knew.I hate that, because I don’t know what the hell to eat in the morning and cannot fathom knowing, I mean hand on the bible knowing that I was going to die young. It is unconscionable to me, so how does that affect your life, your meaning of life, your belief system?

Every day I do what I have always done for my whole life, I am not happy about it, some days go better than others, but during my childhood I was never good enough, at anything and was reminded of that fact regularly; yet I still do the same thing I taught myself early on, over and over again.

I get up, I put my feet on the floor, and I always take one step forward.

The pain will always be there, the loss is very real, I absolutely hate walking into my house, her house, the house we built together, for there is no warm echo of her voice, only cold walls and pictures to remind me of what was, and what never will be again.

But I move forward.

I believe you need to keep moving to lessen the impact. To understand what that person meant to you, not by staying home curled up in a ball but by trying your hardest to laugh, have a good time and remind yourself that you don’t know you’re going to die. That you don’t have even the slightest inkling what your last day on this planet may be. So keep moving, keep your head up and keep striving for that next big finish line, covering ground, climbing not sinking further into a hole of despair.

Again the pain is still there, oh it’s still there, and it hurts badly, so very bad, yet in the morning I put both feet on the floor, and took another step forward.

I said goodbye to Jacy’s car the other day. It took me two hours to clean it out. We purchased it new in 2007 to support the adoption of our daughter. We traveled all over in that car, as a family, singing 80’s rock, watching movies, laughing, so much laughing. It was a part of our family as silly as that may sound. But at 220,000 miles, a computer that was bleeding off power, one power door that no longer worked and another that only opened manually, a front transaxle that needed replacement and an owner who was no longer alive, unable to ever drive it again, I felt that maybe it had to go.

Cleaning it out, I discovered Jacy had surrounded herself with the most precious of commodities; pictures. She had pictures from all years ofevery one of her children hidden in easily accessible places.  They were everywhere and it made me cry. She loved them all, so very much to the very end. To the very bitter end….

But I cleaned it out, with tears in my eyes, a wet sleeve from drying my eyes and patience for what she left behind. When I left the car at the dealership I took one last picture. I don’t know why, it was just a car, it was Jacy’s car.

I put both feet on the floor, and took another step forward.

I felt guilty driving my new/used car. It is nice, it has 60,000 miles on it, I will be paying for it for five years, and it will start anew chapter in our lives for child transportation. But I can’t help but think how much she would have enjoyed the ride. How her ribs wouldn’t have hurt so badly going from the house to Stanford, or her dads. How I should have thrown caution into the wind and just hoped we could have paid for it so she wouldn’t have suffered so badly. I cried most of the way home carrying so much guilt asI didn’t feel I deserved such a nice ride. I gazed at the empty seat wishing she was there, singing badly at 80’s songs, butchering the words and laughing between tears of pain.

The next morning I put both feet on the floor and took another step forward.

We celebrated Christmas. We did this by going to mass on Christmas Eve. It was the first time I had been to our church since she died. It was one of her favorite places. We gathered and prayed, we sang and prayed and I prayed she was there with me. I kept my eyes closed so tightly and tried sovery hard to feel her presence, to hear her voice when we sang, I wanted so badly to know she was with us, to feel her hand slide gently into mine. But it didn’thappen. I couldn’t feel her. I tried so very hard, so very hard it hurt. I kept it together, we took a family picture by the tree. We as a family went todinner after then home. I didn’t go to bed until 2am. I couldn’t sleep becauseI was so upset that I couldn’t feel her there with me! I was sad, angry and devastated.

The next morning I put both feet on the floor and took another step forward.

We gathered in the morning. Cody made a splendid breakfast and gifts were exchanged. Very quickly we noticed mom’s absence. All the goofy gifts she would order online for each of us. Well thought out with some form of funny undertone. There was a giant hole in the morning festivities, and after allwas said and done I found myself alone for the afternoon cooking dinner for just us. It was lonely and sad and well, strange. I closed my eyes and prayed for her to talk to me, I waited, I tired and nothing happened. The house was cold inside and to me there was no warmth of Christmas. But I tried, the kids didn’t seem to notice and all of them had smiles on their faces. They all enjoyed agood Christmas dinner, there was hugs and laughter, but it just wasn’t the same.

The next morning I put both feet on the floor and took another step forward.

Jacy’s dad’s house was the place to be. It was warm, it was festivious and it was filled with love. Everyone was happy and had a good time.I see her everywhere there, and her step mom does too. It is not easy. I walked out to the cabin where Jacy stayed when she needed to be close to Stanford.Just a short 24 months ago she would have been laying there, happy to see me, smile on her face and love in her heart. 24 months, 730 days, 17,520 hours ago,she was here in this spot. 4 months, 122 days, 2,928 hours ago she was asleepon the very couch I sat on today. 2 months, 67 days, 1,608 hours ago she told me she loved me for the last time.

It’s hard to be happy, when you carry so much guilt for things you could have done better. It’s hard to be happy when the center ofyour universe is gone. It’s hard to be happy when you sit on the end of the bedat night hitting yourself in the head because you don’t know who YOU are or howto find out. It’s hard to be happy when the only person on this earth who loved you unconditionally, who you could tell everything to is no longer there to hear you, to hug you, to give you the love you so desperately need. It is sovery hard to find inspiration.

But you know what?

Tomorrow, I will get up in the morning, put my feet on the floor and take another step forward.

Not for Jacy or because it is what she would want me to do.But because this is who I am. It is who I have always been. I don’t have tolike it, I only need to learn from it, to show the way for my children, and tohopefully help just one person who doesn’t think anyone knows, or understands this pain.

My only goal in life is to aspire to inspire. It is all Ihave left, it can’t be changed by time, it cannot die and leave me, and longafter I am gone if I have affected the lives of just one person then it was all worth it.

I love you Jacy Franceschi. I miss you terribly….

I have become afraid.

theycallmebetty2 Comments

I over think things, I really do. I try my hardest not too, but I am the guy who lays in bed all night long thinking, and thinking, and thinking, until I pass out! Of course then I wake up in the morning and start thinking about whatever the hell it is I was thinking about before I went to bed and thus the process starts all over again! Phew, I had to think about that for a minute..

So here is my problem.

When I think about Jacy, most of the time I no longer see her in my mind sick, in pain and getting weaker by the day. My brain for some reason has me grieving our life prior to Leukemia. You know, she is a mom, I am a doting husband, we date twice a week, have rodeo, Criners arena, Sugarland and lots of bbq’s with friends. Also on the flip side my brain is inundating me with Stanford visits and Kaiser Hospital runs/rituals acquired over the last 5 years. So that seems pretty confusing doesn’t it?

Let me rephrase or clarify the upper statement.

It has come to my attention that if I am in a crowd, or shopping, or any place there are people, I begin remembering moments from another time and Jacy being with me, or have memories of us doing things together in conjunction with “whatever” activity I am participating. She is healthy, and so damn beautiful and it crushes whatever spirit I had towards the activity I am trying my hardest to participate in! I begin looking for her desperately in the eyes of every woman that passes by me, every woman with her back to me, I search and search and I can’t find her in the crowd so my heart rate goes up, then I can’t breathe, I am afraid and just when things seem like they couldn’t get any worse they do! I find myself running for cover trying to hide so no one can see I am falling apart on the inside! Then it just happens, and I can’t stop it! I cry.

Crying is absolutely ok. I am rational enough to know that, but I don’t want the attention. I simply want to do so without anyone checking on me and when you are in a large crowd with nowhere to hide that simply is not possible. So I try swallowing it down, hard, which just makes it worse. Because as the tide comes and goes, if the waves are held back to long eventually one massive wave will break onto the shore.

Yeah picture that! So fun.

My face hurts, my chest hurts, I swear my heart is going to explode, I start sweating, I can’t breathe and then it happens, over and over again, her face flashes, events flash, her smile, her kiss, her hand in mine, I can’t fucking take it!!! I can’t see her and my head starts spinning!! Then just like that, it’s gone. She is gone and it’s like someone lifted it all off my shoulders, until something else sets it off and it starts all over again.

I went to Nevada City today to celebrate Christmas with my son since I really haven’t been feeling it at all. I was excited, he was excited; we walked past the entry sign and into the crowd. The deeper we went I felt the tightening in my chest. I began searching. For her…

Parker shopped away as one woman after another passed me and although no one even remotely looked like my wife there was something, some kind of resemblance; a dress, the shoes, the way she walked, a smile. Stupid really, but it only furthered my need to find Jacy! I become irrational, saying things to myself like; She would have loved this place, the smells, the people, oh my, she would have been talking to every stranger she could in every shop or booth! I knew she just simply had to be there! She couldn’t be dead there is no way my wife, the strongest fucking person I have ever known could be FUCKING DEAD!!! WHAT THE FUCK!!!!

Turning the corner looking for a place to run and there in the window of a shop is a pair of shoes. Not just any pair of shoes, but clogs, her favorite and they were decorated and colored and she would have loved them and I would have bought them for her for Christmas because we loved Christmas, and church and Christmas eve pajamas and snow balling our friends and FUCK, FUCK, FUCKITY, FUCK!!!!

But see it doesn’t get better either.

The second part is when I am driving. That’s when I run through five years of hospital rituals, three years of Stanford Hospital rituals. Sneaking her hamburgers when she wasn’t supposed to eat them. Playing words with friends for hours, watching Survivor, quite literally ever single season-twice. Spending all those moments together with machines beeping and nurses coming and going and holding her hand through it all. Listening intently and calming her down as she tells me to please murder the next nurse that puts her on bed alarm! Telling her I loved her a hundred million times, not because I had too, or was afraid she wouldn’t know but because I wanted too. The way when you are first in love and you say those words it feels magical. Yeah like that, every time. Even when things weren’t going well. That’s the way it felt for me. I haven’t heard those words back for 50 days now. It is killing me inside.

I had to go to Kaiser the other day for me. It took me 15 minutes to get out of the truck and go inside. I even parked in the wrong place because I was on auto pilot. Once inside I wanted to run away. I never want to be inside that building again. Either of them. It’s irrational and I know I am going to need to get over it but I can’t right now. Every corner I see her, in a wheel chair, waiting for me to push her into an elevator. Or sitting around the corner waiting for a blood draw. I see the same faces of the same ladies working at reception who helped her and I pray no one makes eye contact with me. I know they won’t know who I am, but if they look at me I will feel like I am supposed to walk up and say; hi good morning, yes Jacy Franceschi at 10:30-04039018. Thanks yes I know where the paperwork goes.

If I drive towards the city it’s all I can do not to head towards Stanford. Again partly on auto pilot and partly because I still feel like she is there and this is all one big misunderstanding! There is no way she is gone, there is no way she is dead; there is no way she is in this wood box sitting behind me! The summation of her physical being bound into a bag with a copper tag and number that have the earrings she was wearing taped to it! There is just no way!!! They said it was a 10/10 match!!! She had the very best odds. They said that, I heard it!! They said she was going to live and there was only the slightest of chances things could go wrong! I heard that too!!!! They fucking said it!!!

I want someone to wake me from this horrible dream. PLEASE!!!!

Listen, I know they said a ton of other things as well, but it is just where I am right now. I don’t blame them, everyone was amazing to us and our family.

I just want my wife back! Can I go to heaven just for the day? (yeah like the song) Just so I can make sure she is ok? It was my job for so long it just feels so unfinished, and yet that is exactly what it has become. Just a day so I can come back and take care of the kids knowing she is all right. That’s all I ask..

Oh well, I guess I will just have to assume.

Listen, I know it will get easier over time. I don’t know how long that is going to be and really I don’t care. I loved her for 17 years, she was my very best friend and I will love her still, no matter where life takes me. I will never quit loving her, or the memory of her, I just wish for a while, I could turn my brain off and quit being afraid.

A Little Christmas message..

theycallmebetty8 Comments

Christmas has always been my favorite holiday of the year.Lights, trees, church, love, family and all the wonders that come with celebration.

Over the last five years we have struggled to make it the very best Christmas we can. Some years we did a stellar and I mean a flat out,old college try, jaw dropping successful experiment in making things work bringing love and joy into an otherwise really shitty situation! Then other times we just muddled through taking selfies and tons of family pics simply to prove we did our very best.

In the long run or the end game as it were, this did turn into a blessing as we have some sense of just how much we all loved Jacy and our family through this hell we were living. Don’t get me wrong, we knew just how much we loved everyone, and know it to this day. I genuinely love every one of our families to no end! But trying, even when you don’t want to and it feels just wrong is 100% the right thing to do.

 So here we are, December 5, 2018, 47 days since my sweet Jacy left us to be with God.

Guess what?

I don’t want too.

Yup, that’s right, my favorite holiday and I simply don’t want too. I am trying my hardest to find the joy in this moment. I made it through Thanksgiving which is by far not one of my favorite holidays, but I just don’t feel it.

Parker got out the fake tree last night. We always put up a fake tree right away in the room where the wood stove is in so you can see it when you come downstairs in the morning. He drug out all the ornaments and put up the lights. I was proud of him for taking the lead and I told him so. I chose to put my feelings aside and help him, because as his father, regardless of my personal feelings I need to set an example and I know that for the same reason I don’t want it, he really does.

While we dug around in the closet for the “cheap” ornaments that go on the fake tree. I knocked a shelf and a hat box fell onto my head. It burst open and inside was every single love letter I had ever written my wife.I had no idea she had kept them all. I knew of several hat boxes and their contents, but this one I hadn’t seen. I stood jaw open as I picked them up carefully and started to read them to myself.

By the end of it, an hour had gone by, I was balling again as my heart poured out to my wife within the confines of those pages. One of them had her lipstick on the bottom as though she had kissed it after reading it.

What she never knew was I kept every letter she ever wrote tome. My favorite being a single page left under her pillow for me to find (she knew I would because I make the bed every morning) after she left for Haiti on her first trip. I read them all, the cards too. I saved the one from Haiti for the end.

I cried some more.

Now this is where you think I probably went into a very deep and dark rabbit hole. Oh I am sad, so very sad but not for what you think.

You see I believe she was there and knocked that box on top of me. I believe she needed me to see it, to feel it and to put her letters and mine together to better help me understand that although I am alone now, this love was never as one sided as it feels without her here. I believe she was telling me in her own way to not be sad for what’s lost but cry tears of joy for what we had together. I know this because that is exactly what she wanted.

I cannot believe a guy like me was able to have a woman like her. She was my best friend in the whole world. How lucky was I to not only be married to an amazing human being, a kind giving soul, but someone who was not only the absolute love of my life brought together by God, but my very best friend as well! What we shared, I only wish everyone could feel that, to hold that, to grasp it tight and realize that you are indeed the lucky one!

I put them all away. I cried for a very long time because I do miss her so, so much! I do feel as though I still can’t do this without her but I know I will, it is just who I am and I know it’s one of the many reasons she loved and believed in me. I just need to believe in myself and that will come with time.

I am going to do my best to make Christmas happy, or as happy as it can be for our family. I will carry forward our love, it will suck Christmas morning as there was no mom happier than her watching her children tear apart gifts and laugh together.

I will try. I promise.

Jacy if you have anything else hidden that you need me to find, could you please wait until after the first of the year? I am pretty dehydrated from crying so damn much..

Thanks, I love you…

A letter from Betty

theycallmebetty15 Comments

Hello everyone,

It has been no secret that I am struggling. I know it’s only been a month (in 3 days), or holy cow it’s been a month already since Jacy passed away? I guess it depends on your point of view. There has been more support for our family than one person deserves and I am very thankful for all the love.

The truth is, I was ready to quit writing after the last posting.

I stared at my pen name- Betty

I no longer wanted it.

Jacy called me Betty all the time. When I got to laughing and right before I hit full blown snorting, to my wife, my laugh sounded like Betty Rubble. It is a name I have worn with great pride.

I still don’t hear it, but that’s not what’s important. What is important is she thought that, and that is love, small and insignificant, but love none the less. I felt like as she died, it should die with her.

Quite a few people in our tight reign never have understood my need to write publicly. To express my feelings for the world to see. The reality is the only people seeing it are those who know us or have heard about us through friends.  I started this blog I think in 2011. I started it as a way to communicate my perspective on being a father. A single father most of the time, as my wife was a single parent most of the time as well. You see between her teaching and me being a firefighter not only with lots of time off but gone during the summer a lot because of overtime or strike team assignments, I felt the fathers perspective was important on raising children semi-alone. Of course we were never really alone, there were more times we were all together as a family than not, and what an amazing family my wife and I have been blessed to create.

As I am writing this it dawns on me that she is going to miss so much, and that is tearing me apart.

Little did I know it (the blog) would morph into something completely different a short 2 years later, thus The Face of Leukemia was born. This is where I am struggling. My need to write publicly came about because I felt after looking around on the web post diagnosis there was nothing, and I mean nothing for the spouse of a Leukemia patient!! There was the obligatory stories on how to support your ill spouse, but nothing in regards to what you really will face emotionally and long term if things go that direction. It drove me nuts!

Also let me preface with something if you will. The man I am today is nothing like the man I was before my wife got her hands on me. She worked very hard on this human being, I have never refuted that for an instant! They say:  behind every good man stands an amazing woman.

I say; standing alongside every good person stands a very patient, devoted spouse.

That is because both of you should complement the other. She complimented me every single day by striving to make me the very best human being I could possibly be and she never once quit me. Make no mistake, I never made it easy for her, but she persevered. I love her so much, and miss her horribly. Not having her here when I need help is terrifying.

I digress

So finding nothing for Leukemia spouses, I hoped, no I prayed that if I wrote about how I was feeling, the struggles we both were facing, the highs and the lows, the triumphs and unfortunately the failures, someone, anyone would see it and not feel alone. Jacy supported me in this because after reading a few, then following every single one I wrote she knew in her heart it would help others and really all my wife ever wanted out of life was to help others, each and every day. We had a few that were too much for her to read and near the end she asked if I would stop writing about her all together. It was because as she read my postings she knew her time was becoming short. It was scary and hard to imagine. She had always been such a fighter and coming to terms with what would be the ultimate loss was more than she could bear. I honored that promise.

I feel as though my job is done. I feel dismayed over what lays ahead, and I swear to you, if you are reading this, I have never meant to make anyone cry. I hear that a lot and it weighs heavy on my soul. One of the things my wife loved and hated about me is that I have absolutely no filter. I say what I feel. She loved it because during our entire marriage she always knew where I stood on just about everything. She hated it at times because in the beginning I didn’t know how to temper it, or turn it off for it may create an inappropriate moment. But as with everything she did, she worked hard and rounded my sharp edges. Yet I still feel awful when I know my words or feelings have hurt another through my writings and I think that is the public portion others don’t or will never understand. Because to get to that point you need to put it all on the table and to do so takes away any privacy in just about any matter. I made our struggles very public. So with that, the question which has been hanging on me is; do I keep on? Is there a reason too? Would she want me too?

Do I stop being Betty because the only person who knew me, I mean truly knew me as Betty, called me Betty and professed her endless love to Betty is gone?

Do I carry on with Betty as a remembrance or tribute to my amazing wife?

Do I just keep crying every time I hear her voice in my head telling Betty to come over and give her a kiss because she is proud of me?

Do I keep writing hoping I still have something to say that will help another?

What the fuck do I do?

Seriously where is she to tell me what the fuck to do!!!!

This morning I awoke from a dream. It was such a great dream! She and I were together, walking hand in hand, the kids were small and running around through a forest. She was telling me all about her day at the Montessori school and how the kids emotionally filled her gas tank and how she loved each and every one of them as her own. In the middle of the conversation she looked at me, held my face and told me just how much she loved me and how she appreciated that writing about her was helping so many others. I was confused because I didn’t know (in the dream) what she was talking about.

When I awoke at 5:30 this morning, as though someone had hit me in the face. I laid there and cried a little because the dream was so real and she wasn’t there next to me. Then I began remembering the dream, and feeling sorry for myself until I came to that portion in the woods. The recollection was powerful and strong. She was talking to me, not at me, or with me, but to me, Betty her husband.

I listened.

So Betty is going to stay around for a while if you’ll have me? I’ll probably be writing about how much I miss her, figuring out who I am and trying to unlock the mystery of how we move forward from here without quite possibly the best person I have ever known in my life by my side. I really do hope that if this blog still reaches just one, then I suppose my job is done.

Also for those wondering I have set a deadline for a finished product on “the book” for the end of December. Figure maybe that’s a sign for a good new year. Lord knows this cursed family needs a least one. And again in the New Year we will begin the process of starting a Jacy’s Army foundation. Starting with scholarships and we’ll see where it goes from there, but I absolutely refuse to let the random acts of kindness my wife performed every single day, disappear form this earth.

Know my fellow AML. Leukemia, BMT friends you are not alone, these are real emotions, real feelings, and although in the end it didn’t turn out the way any of us had hoped, it can still turn out well for you and others just like yourself.

If you enjoy reading this blog, then take what you can, make it your own, and pass forward the love. Because really isn’t that why we are here on this earth? To help others?

God bless you all,

Jacy’s Betty……..

The Face of Leukemia belongs to another………

theycallmebetty5 Comments

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.

An Incredible Journey

theycallmebetty9 Comments

I am on an incredible journey and I don’t know why.

Why was I chosen to walk this path filled with so many unexpected surprises? Why do I struggle with the same challenges day after day, feeling as if there is no reprieve? Why I am even allowed a new morning when others for who I look up to, revere or admire are facing their last days or have simply vanished, passing from their earthly constraints.

Every day I awaken, place my feet firmly upon the floor and stand up. I then make a conscious decision. Do I carry on, or give up? Do I meet the day’s challenges or pull the sheets over my head and cry foul? Do I continue to regress emotionally or do I say fuck this, square up my shoulders then throw a middle finger towards an overwhelming temptation to just quit?

Lately it has definitely been the latter. I’ve been putting on a good face while struggling to get out of bed then smiling the smile, telling the same old jokes, letting the actions or words of some bring me down and basically feeling as though I should be giving up. I am not happy, not happy in one little bit.

The darkness has crept in and I haven’t seen any light for quite some time. Between the duties of caregiver to my wife, caregiver to the public and struggling to remain a vigilant father while my children struggle with their own feelings for which they have no knowledge or control over in regards to our current situation. I have slowly faded away. Not all at once, but little bits at a time.

It feels like constant darkness in my head, every moment of every day and there has been nothing I can do about it.

So you begin to ask; if there is so much darkness why do you proclaim this an incredible journey?

Because like it or not, hate it or love it, detest its existence or clamor for more, it is an incredible journey!

As human beings it is our job to grow and share. It is not a right, you are not rightfully given another day on this earth. You have no right to prosperity and wealth, you have no right to a job, a house, a marriage, a life of any kind. You have to earn it!! Then grow and share through the process!

That’s right, I know this may come as a shocker to some, but your life is earned. What you have accomplished by the time your final day comes (and it comes for us all) is 100% purely up to you!

My grandmother came to me in a dream last night. (Don’t get all; holy shit he’s gone off the deep end) Although I know dreams are a conglomeration of memories, subconscious thoughts, neural transmissions and blah, blah, blah. It was exactly what I needed at just the right time.

My grandmother on my mother’s side was a very interesting woman. She graduated from Stanford during a time when women were considered less than men. She dated a few notable individuals of the time. She made her own way through life when in her forties her husband, my grandfather died of a heart attack. She had a very successful career in finance when women were considered nothing more than secretaries and used her skills to set an example. She traveled the world going where she wanted when she wanted with nothing holding her back!

As a child I vaguely remember her stories about life, travel and the many lessons she put before me. Whenever we visited she used buttons to teach us about money, plants in her greenhouse to teach us about life, books to teach us about literature and conversation to teach us about the human equation. I woke up this morning wishing I was 8 again so I could hug her and listen more intently.

She wrote a book about her life. I have it on a shelf. I have read twice and when I awoke this morning it dawned on me that I may need to read it again. I need that emotional connection, to relearn what it means to be me, throwing caution to the wind, standing up for and protecting my ethics, beliefs and way of life no matter what anyone else says because my life is mine. To help stay on track, for in my heart I still believe that we all learn from one another’s triumphs and mistakes. During this crazy time where our socializations seems to only focus on a small device that spews nothing more than negativity an hate tearing the very fabric of this country. Maybe one small voice, writing about his struggles in an obscure seldom read blog could remind us there is a positive, no matter the circumstances and that choice would mine to make. No one could take it away.

My current situation has a myriad of balls all up in the air, a juggler’s nightmare as gravity brings them towards me at a dizzying pace! It constantly comes up in conversation when people say; I don’t know how you do it, in regards to the struggle associated with raising four children, working as a firefighter while caring for my wife with stage four Graf vs Host disease. Watching as she withers away, gets strong then withers away again. Is frustrated with the fact she is going blind yet bravely and with great fortitude works her way through daily activities for which she refuses to give up on. She is strong, brave and amazing.

It (the how do you do it comment) is a simple enough statement, it is never meant with any disingenuous undertone, and my response is usually almost always; it is what it is. I say that as to not offend anyone or hurt their feelings. But my real thought is; how could I not! This is my life, my family, my wife, what the hell else am I supposed to do?

I realize we live in a decaying society where it is easier to point a finger, post it on Facebook, complain publicly, give up and run away than it is to stay behind and fight for the ones you love! Fight for the life and family you have created! To me that is a sad moniker of what our lives in this country have boiled down too. If the going gets tough-make a spectacle then QUIT!

There are those that wonder why I write so openly about my personal life and if it affects anyone close to me.

Yes it does affect those close to me, but I have always felt deep inside it was my obligation to share everything. Why? Because I have yet to see one writing that adequately covers or assists the multitude of struggles and emotions I am feeling. Everything ever written in regards to being the spouse of a Leukemia/Bone Marrow Transplant survivor is generic! Nothing even remotely touches the many facets of life this horrible disease along with recovery post-transplant throws in your face. It is all glossed over as to not scare you. Well guess fucking what? Life is a scary thing, now throw in all the new challenges associated with a wife whose body is trying to kill her and well you better sack up and learn from someone who has walked the path! Stay firmly away from those who wallow in a dream world where after treatment life just carries on as if nothing ever happened!!! Which is where I think I come in, for those who want the truth and seek it through my writings.

So then I wonder do people think my attitude comes naturally. My ability to cope? To understand and carry on?

Because it takes work, patience and the ability to listen, not pass judgement when you can and keep an open mind. It takes and incredible amount of faith and that faith is tested, over and over and over again! This journey I am on reinforces all those things on a daily basis!

So then my mind digs deeper into that simple question of “how do I do it” and I wonder some more. Do people believe that being a firefighter comes naturally? That we are all born with some obscure kryptonite type gene that predisposes us to the atrocities of the human condition? You see, firefighting, that is the easy part! It always has been and always will be. You still need to understand basic chemistry and have a few years’ experience using those skills to know exactly when and where placing the right amount of water at the right time will put out the fire while saving lives and property. This professions education is real, the long hours studying and keeping those skills are mind numbing. As a firefighter you need to become proficient at a little bit of everything. Building construction, demolition expert, code compliance, hazardous materials, chemist, investigator, auto mechanic, auto technician, computer genius, locksmith, heating and air technician, heavy equipment operator, financial advisor, ER doctor, supervisor, pastor, councilor and truck driver. If you added up the salaries of all those things each member would be worth over a million a year and we can go into the private section with our degrees and make three times what we struggle to earn in our jobs, but that’s not why we do it. It is an overwhelming need to help people. But as if that load of constant learning wasn’t enough, and as I said, fighting fires using all that education is in fact the easy part, you know what the real struggle is? The thing that keeps us up at night, the thing that not one mother fucker prepares you for that haunts your very soul when you lay your head down on that pillow?

It is the endless onslaught of death that we must deal with on a regular basis. Dancing in our heads like ghosts from Christmas past. Dealing with them any way we can, through counseling, good friends and time away from the big green fire engines. It is also coming back the station and reading in the local paper that our city council doesn’t support us in the least. Or we are attacked by the public because we go as an engine company to the store to purchase our supplies which we pay for from our own pockets or that our retirement is some magical golden egg that is draining the state’s coffers when we pay an ungodly amount of money per month out of our own pockets to fund it. Its understanding and coming to terms with the fact we are not funded in social security therefore we only receive from social security what we put in prior to joining the fire department. But hey none of that matters as we lay our heads down at night, trying to erase all those horrible images while also knowing we are unsupported you know why? Because most of us won’t live past 60! It is a statistical fact we will all contract some form of cancer from all the chemicals and carcinogens we have absorbed or inhaled throughout the years! But no worries we’ll just keep pushing it all down deep inside so it doesn’t show when we get home! That way our families and spouses won’t see or feel our pain, so they can have that great husband or father home for few days all happy and cheery like normal families!! Right? Right?

Why do we do it? Why do we keep coming back for more? Because we wish nothing more than to make that one save, that one moment in life where a positive impact on another human beings life has been made. So despite being treated like shit by our public officials, living with our deepest emotions, we can rest easy knowing another is alive, enjoying their family because of the sacrifices we willingly made. Fulfilling our own prophecy through hard work and dedication. Bringing life full circle.

This journey has allowed me to witness my wife fight for her life while I hold her hand, struggle as she struggles and rejoice as she rejoices. We don’t always agree on the topic of rejoicing but through this journey I have learned the importance of shutting my mouth while allowing my spouse to find the joy she needs over little accomplishments. I have learned to keep my mouth shut as she sheds tears, relinquishing my need to fix things. For there is nothing I can fix and only a shoulder to cry upon or an ear to yell into is needed at that moment in time. I have found understanding I never knew I had as unwarranted venom flows from her mouth one minute and angel’s wings sprout lifting her high over her pain another. I hug her when she needs to be hugged and leave her be when she wants nothing more than her headphones and a television show she has seen 100 times so she can listen to it as her eyes will no longer allow her to watch.

This journey has taken a toll on my life and although as of late I have been angry over its direction, angry at the life we now lead, angry at myself for being so very fucking angry inside!! ALL THE DAMN TIME!! It is still my journey, I am writing (quite literally) my own story. It is up to me how it ends.

At the end of the day, when my time has come, I want my children to look back and not remember the struggle. But remember their father handled it all, with strength, grace, positivity, faith and a plan. Ok let’s face it a few good old fashioned Irish/Italian hot headed fuck you fest temper tantrums as well. Then I want them to be able to go to a bookshelf, pull out a well written book, open the pages and read the story of my life, their lives, and the lives of those who loved them unconditionally. I want them to ride along in this journey page by page and remember the way I remember my grandmother.

Does labeling this shit storm we live in a fantastic journey mean I will become more positive? No, it means I know who I am and what I need to do.

Will my mood cease to be down and at times dark? No, I am human and with that naturally comes forms of negativity. It is life.

The blog has been dark as of late because I have been struggling with so many emotions tearing me up inside. I am sorry I haven’t been able to share for those who reach out to me on a regular basis. Time to light it up again, hit that keyboards and continue along with this fantastic journey.

God help me…

 

 

 

 

2017 a story not yet written.

theycallmebetty12 Comments

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

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

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

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

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

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

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

 

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

We will get through it all, journey be damned.

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

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

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

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

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

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

 

 

 

 

Jacy Update; One year later.

theycallmebetty8 Comments

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

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

Fast forward one year.

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

Over the last year;

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

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

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

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

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

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

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

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

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

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

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

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

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

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