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.

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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!!!

2017 a story not yet written.

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.

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

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

Fast forward one year.

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

Over the last year;

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

I 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.

 

 

365 days

One year-365 days

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

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

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

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

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

But it has not come without a cost.

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

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

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

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

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

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

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

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

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

 

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

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

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

kids

 

 

 

Oh how the wheels turn…

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

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

Then came Monday night.

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

It was a very long night.

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

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

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

I’ll see you in a bit, I love you.

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

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

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

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

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

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

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

 

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

6/4/2016 @ 11:00 am

 

 

 

 

 

The Journey

Thursday we made our bi-weekly or so, journey to Stanford. These required visits are needed so doctors may track Jacy’s constant state of GvHD.  Whether it be dealing with a pulmonary function test, her intestinal tract, eyeballs, skin or simply drawing blood to determine antibody needs we always arrive nervous, expecting the worst but hoping for the best as in serious signs of improvement. These appointments can range from down and dirty, leaving us with more time on the road than actually inside any facilities, to eternally trapped on campus with no place to retreat between sessions! Moving from one appointment to another with sometimes more than an hour or two in between visits. We laugh at each other for it has become the only alone time we ever receive and of course nothing is more romantic than swooning surrounded by similarly sick people or holding hands beneath the deep shadow cast from a set of IV pumps inside a sterile chamber. On this particular day Jacy was meeting with her primary Doctor which is always a treat. She loves seeing Dr. Muffly and always comes away feeling as though she just spent time with a friend. But first a 4 hour IV infusion of antibodies to boost her multi layered, still very confused immune system. After that a little round of pulmonary function testing and then it’s back on the road to hash it out with every Bay Area commuter trying their best to get home in under 3 hours. Of course the first hour is fun for me as I play a time honored game started with my son Parker that centers on the Toyota Prius. Much like the road game slug bug only the Prius takes its place. We also play the car spotting game, Tesla, Ferrari, Audi, and Porsche. It is fun driving through a community where the majority of vehicles on the road are green or simply cost more than my house. Ahhhh to have that kind of disposable cash….. We pulled into Stanford’s Cancer center turn around at 10:30 am after a leisurely 3 hour traffic jammed ride when my wife suggested I find something to do other than sit by her side for 4 hours during her infusion. Now normally I would have balked at this absurd suggestion as I have always believed a husbands place is by his wife’s side, no matter what! But today she was right, I needed some Betty time. Time to reflect and be alone. Time for just me with no one needing me for anything. Trapped in the center of Silicon Valley with no excuses to hide behind, that is just what I chose to do and with a kiss, a hearty good luck and I’ll see you in a while, this guy headed out alone.

Where to go, where to go????

I thought about going to the Tesla store but I knew then I would want one and since that type of purchase is nowhere in our future I turned the old faithful 200,000 mile wagon left instead of right. Of course this also eliminated the Ferrari store, the Audi store and who couldn’t pretend car shop without sitting inside a Porsche 911 4S! To dream ah to dream.. First retreat I chose to patron was a little restaurant I have passed a hundred times. A quaint little place nestled in the hills above Palo Alto. A place I have yearned for my world to stop just long enough so I may cross its gastric threshold, yet there never seems to be enough time. Today would be different. When I pulled into the parking lot the first thing to hit me was a smell of ancient redwoods filling my nostrils. Walking up to this small, shake covered hut, heavenly aromas wafted across the open plane. Stepping onto a huge well seated porch I quickly took my place silently amongst some of my favorite people in the whole world. Bikers

That’s right Bikers, masters of the motorized two wheel sleds. Throttle squeezing, leather wearing, Carbon fiber covered, alloy loving, helmet adorning, race pipe thundering, high rev, revving BIKERS! Eating my breakfast a Cheshire cat smile glistened as I listened to each story about the mornings ride, or a previous ride or a tale about someone else’s unbelievably adventurous ride. Tech talk at table two involving power commanders and horsepower. New heads for table fives Harley and a freshly painted fairing to boot! I could almost feel a bike running underneath me! It was good to be back amongst these folks. Gazing across the landscape I recalled many of my bikes from days past. A simple street cruiser, bench seat KZ500, my very first Harley! I could still sense the raw power and throaty noise coming from one of my customs while aching for the sheer arm stretching torque produced by my ZX12R which had quite a few modifications. Each motorcycle reserving a special place in my heart, leaving me smiling, content and hoping I’ll know that feeling again. Yeah, someday day, I’ll be back. After settling up with the waitress I drove down the road a ways to a state park where walking off breakfast sounded like a good idea. Parking the car, walking to the trail head I chose a direction and headed out across this large open field. Working my way along the hillside there arose a bench in the distance. Reaching that bench I couldn’t help but laugh as I read the plaque inlaid upon its top plank. It was quite simply labeled “Bobs Bench”. Taking a seat the view was amazing. I thought to myself somehow dad knows I’m here, sitting on a bench with his name and wondering how he is doing. In return I knew he was looking down upon me, letting me know he’s watching over Jacy. He loved her so, they bantered back and forth and in reality the old man lived for her calling him out for his shortcomings.

Strolling farther down the path it felt as though the weight of my world had left for a bit, a beautiful fern laden path, some ancient trees, and even a few Mountain Lion tracks made this the perfect hike. I lost track of time and before you know it I had traveled 4 miles. It was glorious! Now I will say this, when deciding upon an impromptu adventure, ensure you retain alternate apparel somewhere in your vehicle for just such an occasion, for as I discovered the hard way; Vans are not for hiking! Just saying!

Back at the car I made it three miles down the road when Jacy called to say she was almost finished. Perfect timing. Picking her up some lunch then circling back into the Stanford Cancer Centers turnaround she climbed inside already a bit exhausted. We headed over to the main hospital where we arrived very early for her last appointment, a pulmonary function test. Luckily we didn’t have to wait very long and before we knew it back on the road we were, heading for home.

I thanked my wife for the wonderful morning, and I told her all about the day’s events. She told me about her appointments but before long she was drifting off to sleep. We weren’t 30 minutes into traffic when Jacy’s head nodded its final nod, resting gently towards the door, looking completely tuckered out.

These trips are hard on her and so is the process of recovery. She tires of being exhausted all the time and doesn’t understand why she just isn’t healing or regaining any of her former strength and vitality. Jacy is very thankful to have survived, to have fought as incredibly hard as she did, but the longing to just be normal, to ride horses, to help her kids, to be a teacher again surrounded by children who aren’t hers, but in reality are very much her children has become overwhelming for her at times. It is hard as her husband to see her in pain, to see her struggle, to see her longing for the past. As a man I am a fixer by nature and I can’t fix this, I can’t make it better, I can’t take it from her and make it my own.

The best I can do is support her, listen when she needs an ear, stay quiet when she screams at the ceiling, give advice when she asks for it and when my wife says to go do something on my own. In this case a journey within the monthly journey.  Do it, enjoy it, and thank her for it afterwards for without her coaxing me to do so, I wouldn’t. I would stay right by her side, making sure she is ok and telling her just how special she is to me.

I cant wait until the both of us can sit on Bobs Bench.

bobs bench