Category: Leukemia

It’s time for all of us to start talking about P.T.S.D. (Post Traumatic Stress Disorder)

theycallmebetty17 Comments

What is written below was born from a single sentence spoken to me one day after what was essentially a rough call. A group of us gathered with a well-known, well liked chaplain within our department to ensure no one either needed or didn’t need to discuss the day’s traumatic events. All was fine, we all spoke a little, shared our feelings the way we always do with a little sadness submerged inside of humor and yet; this one sentence has lingered in my head for months now, and like an aching back that needs to be stretched or an itch that you just can’t reach, I finally felt the overwhelming need to move or scratch, leading to this chaotic rant.

Driving to work at times is more difficult than you may think. I get up in the morning like everyone else does, make coffee and breakfast for my wife so she can take her medications. (My wife is suffering from GvHD or Graft vs Host Disease after a Bone Marrow Transplant) Without missing a beat my tired achy body rousts the rest of our clan from a good nights slumber. One heads out to feed animals, the other two work on breakfast, lunches and packing up homework. After a cup of coffee for myself, getting dressed and brushing teeth, I find myself making sure the entire snack drawer hasn’t been loaded into only one backpack while ensuring the teenage boy has gathered up his crap as well. I meet with the wife one last time, making sure she has taken her medications, she has enough food and supplies to last her until our oldest gets home from work and that she has a charged phone to call me in case of an emergency. Then we all hit the road, them to school and I am off to work.

We live out in the country and it is a ten mile drive to town. Some would say it’s far, I think it is just far enough. Some mornings I may point out the beauty in a sunrise, or a unique cloud formation during a storm coming over the mountain. Other mornings depending on the time of year it may be the Almond trees in blossom, Geese overhead (we live just west of the flyway) or the simple, still, eerie way fog lays upon the ground. But the reality is every turn, every stretch of roadway we travel, it is there; like a kick in the teeth or a punch to the stomach. It is always there reminding me of my life, the hidden lie we all live in regards to life and the fact that everything comes to an end in death.

I became a full-fledged probationary firefighter on June 7th, 1995. When we started we were young, brash and full of ourselves. We heard all the stories from the old timers and we couldn’t wait to step onto an engine. Through diligent hard work we successfully graduated our academy. We didn’t drop out when it got hard, we didn’t cringe or flounder through basic medical training, we thought we knew full well what we were getting into and we were damn proud to be doing it! Much like the majority of our academy class, all I ever wanted to do was help people. I have always known there was something more for me, and I still feel that way today.

When we started in station I followed the senior guys around. Dumb, ignorant with no experience what so ever, I made every effort to learn as much as I could! To listen and emulate those who paved this glorious road before me. I also went straight back to school, obtaining an E.M.T. or Emergency Medical Technician’s certification and started working on learning about the fire engineers job so I better understood what was happening at the other end of my hose line during a fire. I spent hundreds of hours soaking up firefighter skills and responsibilities, hoping to be good enough so one day the senior guys would trust me to carry out important tasks on any emergency scene. It was (the job) and still is, everything I hoped becoming a firefighter would be.

They (the old guys) really do try preparing you for every conceivable situation be it fire, vehicle accident, medical aid, haz-mat, flood, rescue etc… but there is one thing you can never be prepared for, one thing no one really wants to talk about, and that is the constant never ending death. It is not the fires, or the car accidents or even the medicals that wear down your body over time, it is the constant death that wears down your mind and even at times your resolve.

In their defense these seasoned veterans only knew from what had been passed down to them. They try, oh yes they try in their own weird humor filled way. A way we adopted as we got older, supposedly wiser with more runs under our belts. Our chief at the time warned us during our graduation ceremony with one sentence that went something like this; You can never prepare yourself for the things you will see.

How true he was, but as young kids we just laughed! You know that nervous, I am a tough bad ass laugh you usually hear right before the laughing idiot gets their teeth kicked in? Yeah that laugh. We were naïve, dumb and blinded to the realities of our world. Hell! We’d proclaim; we’ve seen death! We have watched enough horror films we knew exactly what death is, (insert chest thumping here) and yet we knew so very little. So shamefully little about death and our both personal and professional responsibility in regards to handling death.

Fast forward 21 years, back to that morning taking kids to school. Every turn on the roadway while talking to my kids a memory reminds me of an accident here, or a death over there. The father of three, ejected and if that wasn’t insult to injury enough the car rolled back over on top of him. The grandfather whose tractor flipped over on him out in that field over there and no one knew until later in the morning because well, grandpa is supposed to be out tractoring. The car that ran the stop sign at this intersection, running off the roadway and striking the culvert thus bursting into flames. Once we cross over the freeway into town, we pass a house where I held a child screaming and crying because no matter what we did, or how hard we tried his mommy died, right there in front of him.  I wonder where that now grown young man is today. That white house over there, we did compressions on a 24 year old drug overdose or two blocks over when the roommate came home to find his best friend had hung himself in the hallway. Drop the kids off at school and I drive by a house where we had the pleasure of searching and dragging the families’ dogs from a house fire. Those dogs were this couple’s world and although some would say they are just dogs, to some people those dogs may as well have been their children. We couldn’t save them, they sobbed on the front lawn as we carried out fire operations. Hey right here at the intersection where I sit at every morning is the site where we did CPR on an elderly man as his wife gently whimpered up against the wall. I can still see him lying there, I can still feel her grief. Those are just a few of the road signs as I call them that I look at every morning on the way into town. There are hundreds more, they are just not on this particular route. Oh well back to meeting with our well respected chaplain.

After every borderline call, or semi disturbing sounding response this one lone sentence, made in jest with no malice inferred what so ever kept nagging away at my inner self. This sentence came from a warm heart, a place of love and respect. And it’s because of this one lone sentence for which I have done nothing about that I feel I must honor its intent and finally respond.

The sentence you ask?

Our chaplain; “Don’t worry about Betty, if something is bothering him he will just write about it and we will read it the next day”

Simple, precise and so true. It is my way, my coping mechanism and beyond those who know me personally and those who follow my blog, a statement of fact. I have so many stories written, never to see the light of day. Locked away on my personal drive for only my eyes to re-read, re-live and suffer through quietly.

So with that being said; this one is for you Jim Wilson. Thank you for always being there for not only our department but our neighboring fire department as well. It is people such as you and your partners that make letting go of the evil demons we hold inside, the ones pulling back our tears, screaming in our heads to keep swallowing the pain just a little easier to handle.

I never realized how badly our job had begun to affect me. I become fairly used to the road signs around town and yes they were beginning to wear me down but it wasn’t until I realized I was terrified of my children going out to play, or my sons learning to drive that I knew I may have a problem. It wasn’t until I began having nightmares, losing sleep, or superimposing my children’s faces on those faces of death swirling around my head that I knew I may have a problem.It wasn’t until I noticed I had a migraine every day for two years and my body hurt all the time that I may have a problem. It wasn’t until I realized I was drinking every single night and even though my wife pointed this fact out to me, I brushed it off as; it’s just beer, it’s hot, we all drink beer, lots of beer, that I began to see I may have a real problem. It wasn’t until I found myself crying at stupid movies, commercials or spacing out, reliving some tragedy in my life be it personal or from the job that I knew I might have a problem. The rain, a wind, a smell, a moment in time surfacing from the unknown can bring about not happiness but disturbing morbid thoughts; yeah thats when I knew I may have a problem. It also wasn’t until my wife was diagnosed with Leukemia and the normally stoic, stiff upper lipped man I had become cried like a baby, uncontrollably, without any knowledge of the severity or options available that I knew I may have a problem.

So I started writing.

And I started talking, to anyone who would listen. I began by reaching out to friends in the business, and a few of my close personal friends. We (the fire service) have spent so many years suppressing these emotions, telling our young firefighters through actions or lack  thereof and not words that it’s NOT ok to feel. We seemingly must be strong all the time for if we fall apart we may become less then what we are and what we are is not heroic, or super hero like, which is what many would have you believe. No what we are is human. Death hurts, losing people hurts, seeing the worst in humanity hurts. Yes we are lucky enough to have those moments that are filled with elation. For four years in a row myself and three others were lucky enough to win the save a life award. The moments are there! But the gruesomeness of what one human can do to another or the after effects of sheer tragedy will always outweigh the good, because you can’t just erase those memories.

I like to tell stories (duh?)

When you see me I am more than happy to tell stories about our job. There is good, and there is just the plain old funny ass, you would never believe it if you hadn’t have lived it stories that go with our job! What good is having a long career if there wasn’t some wonderful memories mixed with humor? But no matter where I go, and as much as I love to share our experiences with anyone who is genuinely interested, there is one question you should never ask any of us. Ever. It is not fair, we know you don’t know why it isn’t fair. But it is not fair to us or the demons we hide deep down inside. So please be understanding and hear me out.

Please don’t ever ask this one question.

WHAT WAS MY WORST CALL EVER?

It happens all the time. We get off work and go home, we take time to assimilate back to a normal existence. Maybe that evening we get dressed up and take our spouses, significant others, boyfriends, girlfriends, friends of friends out for an evening of fun. We have a few drinks, the laughs are rolling, jokes are being told around the table through the sounds of others laughing and having a good time. And then it happens. Usually asked by a newcomer to the group or outsider as one of your inner circle would never cross such dreaded lines.

HEY MAN WHATS THE WORST CALL YOU HAVE EVER BEEN ON?

Or

HEY BRO SERIOUSLY WHAT’S THE MOST GRUESOME THING YOU HAVE EVER SEEN?

Followed by; C’mon tell me I can handle it!!

But here is the thing.

You can’t handle it, nor do I want you to handle it! I cannot even begin to tell you the worst things I have seen, or put into adequate words the most gruesome of images. They are forever trapped inside my head, seared into my brain and in what realm of reality do you even for a minute think you can handle what my hands have touched, the scenes my eyes have witnessed, the sounds that no matter the day or time inexplicably reverberate through my head like a sole hiker yelling across the Grand Canyon just to hear themselves over and over again. No these stories are not for you and pray, I mean get down on your knees and pray that you never, ever witness even a fraction of what I have witnessed in 21 years.

Oh I know, I have heard it all and it usually goes something like this; Hey man its cool I have seen the most gruesome movies of all, I watched SAW like ten times! Or my personal favorite; I have seen Faces of Death so it’s all right you can tell me. But see that’s where the problem really mucks it up, for it isn’t even whether or not you could handle hearing stories about the most gruesome thing I witnessed in my career, it’s about the fact that you want to know because in reality the way I see it, that one question you threw out with that little condescending smirk has in my eyes instantaneously become a dick measuring competition!

That’s right I said it’s a damn dick measuring competition! You don’t give a shit about what I have seen or the emotions that went along with that particular call! You don’t give two shits about the fact those calls haunt me and have changed my life forever, changed my family’s lives forever and changed the lives of those involved forever! You don’t give three shits’ about the nightmares, or night sweats, the fact I have held more dead and disfigured human beings in my career to date than any one person should ever need too!! And you know what? There are hundreds of thousands of firefighters out there in larger metropolitan areas and military personnel who have witnessed so many more than I! No what you give a shit about finding is your bravado, filling your ego by sitting there listening to some watered down version because I damn sure am not going to tell you the truth! You know why? BECAUSE YOU CAN’T HANDLE THE TRUTH!!!

No sir this is all about you secretly fulfilling some need to walk away afterwards with shrugging eyebrows and rolling eyes like it was no big deal, followed with under the breath monotone grumblings like; shit that ain’t nothing, man what the hell, that didn’t sound bad at all or Heck I could do that stupid job, I don’t why they make a big deal about firefighters anyways!

Don’t think for one minute I don’t know! Don’t think for one minute I haven’t heard you as you walk away, or seen that smug ass look on your face which makes me want to grab you by the throat hoping you can visualize some of what you just heard simply by looking into my eyes, but in the end you can have that look, you can walk away thinking you can do our job better and someday hopefully you come to your senses finding the need to thank someone like me, or a police officer, highway patrol officer, game warden or every single person who has ever served in the military for ensuring every morning you get to wake up with a clear conscience. That right Mr. Dick never have you struggled through a sleepless night while subconsciously transferring all the absolutely disturbing things that can be done to a human onto the faces of your children! You may care for those around you and if you have kids may even be a great dad. But your kids don’t suffer from all of father’s freakish paranoia. Worrying endlessly every moment of the day, seeing nothing but disaster around every corner and not that Chicago Fire television bullshit either! Real disturbing, disgusting and disheartening disaster. Faces of those who haunt you.

You will never walk down a street and smell burning flesh not food as you pass by a BBQ joint, remembering the guy who intentionally wrecked his car into an overpass beam where it caught on fire and he burned to death. You’ve never had to pull a guy like that out with your crew, grimacing as he came apart one piece at a time like overdone chicken. Or cringe when you see the reflection of a burning fireplace in a window wondering if anyone is home because it looks like a room and contents fire just starting. You can drive through your town oblivious to a memory of a kid run over at one intersection or the family of four that died on the edge of a freeway off ramp! Cruising the very same freeway you don’t see the fuel truck that burned or the semi-truck that crossed four lanes killing two and permanently injuring several others. You most likely also don’t see the road sign that cut a car in half taking the life of the driver and you damn sure don’t pass over the spot in lane number two on a daily basis where I picked up a boy’s face, not his head, nor his skull because those were crushed and lying in the number three lane but his fucking face! Discarded like an old Halloween mask on the first of November!

But hey this is a cool game right? Questions are fun!!!

Never, please ever, ask any of us that one simple, self serving question.

Now in defense of these most dreaded of questions for which I am venting I will say this; I love my job, I have been privileged to participate in caring for the people of this special town. It has been my honor to hold a scared mothers hand, to speak gently to a dying grandfather, to hold and care for a woman beaten by the man who supposedly loves her most, to look into the eyes of a sick veteran and tell him not to worry it’s our turn to take care of him . My life has been blessed with assisting new life brought into this world, extricating people from cars that looked as though a bomb went off inside and then staying by a patient’s side until the ambulance takes them away. Working my way through a structure on fire while it gets hotter and hotter, not knowing for sure if we are going to be pulling someone out or finding the fire first then extinguishing it, because sometimes our job requires we do many things at once. My job has so many plusses that expose a person’s true love for another human being, any human being and even when that person is combative or dislikes us for whatever reason the very same love and compassion comes forth.

It all unfortunately comes at a cost. I have learned over time this career has taken away my ability to see life with a rainbows and unicorns attitude and that really sucks because I really like both RAINBOWS AND UNICORNS!!! The innocence of life long gone from our or my ability to cope.

To those who say; well you knew what you were getting into when you joined.

I say this; you are right, to an extent. Words are one thing, a preconceived notion is another but nothing can prepare you for the reality because no matter how prepared you think you are nothing and I mean nothing can prepare you for what you will actually see, touch, taste and hear. And we (the fire service) are just a small segment of those in public service suffering, struggling to make sense of it all. 

When I see an officer, I thank him, when I see a person in uniform no matter the military branch, I thank them. They are hurting, we are all hurting and we do so in silence. It is killing us. Quite literally and that is something to be so, so very ashamed of. We need to be better, not just for ourselves but for those who love us.

For years there was no one to talk too. If you sought help you are labeled weak, if you brood about it, the answer has always been; let’s have some drinks, you’ll feel better. Joking about it is standard fare and humor is a great thing, it really does help. But humor is a mask for the ugliness hidden beneath. At some point in time you must take the mask off. Are you ready for that? To be revealed?

Thanks to the recognition of PTSD (Post Traumatic Stress Disorder) in not only our beloved military but our public servants as well, we have very skilled and wonderful people at our disposal, just waiting to help. These people are trained well but most of all they have been there, right where we are now. Unable to process, lacking the skill necessary to cope with both severe stressors and simple everyday life. We need to open the dialogue, to speak up and begin to heal our insides. For if our insides are dying our outsides are already gone.

From a simple sentence, came all of this, Thank you Jim.

If you know someone who needs help, please, say something, do something, they need you and just don’t know how to tell you, to share, to release their inner pain. We hold it all inside so you don’t have to see it. It is time to stop that trend. We can all share some of the burden through talking, love and understanding.

If you feel as though you have PTSD (Post Traumatic Stress Disorder) please reach out.

  1. Or Call: 911
  2. The National Suicide prevention line 1-800-273-8255
  3. Go to the nearest Emergency room
  4. Contact your local church
  5. Check with your employer for assistance

It is time we moved out of the shadows and into the light.

 

 

 

 

 

 

Let’s go, let’s show, let’s rodeo.

theycallmebetty3 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It was a perfect weekend.

 

 

 

I met a woman today….

theycallmebetty3 Comments

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

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

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

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

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

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

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

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

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

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

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

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

So to the woman I met today.

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

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

My heart is full.

 

I can’t…

theycallmebetty7 Comments

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

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

And that’s where this posting truly began.

Betty, why haven’t you been writing?

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

What was my answer?

Because I can’t…

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

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

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

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

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

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

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

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

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

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

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

Could I be like her?

I can’t………………………..

 

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

Ok, I’m done. I can’t write anymore….

 

 

 

 

Fear

theycallmebetty2 Comments

Let’s talk about fear.

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

Traumatic events?

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

A change in behavior?

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

Induced by perceived danger or threat?

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

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

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

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

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

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

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

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

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

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

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

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

The ambulance came.

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

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

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

Where’s mom?

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

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

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

I hate fear.

August 13, 2016

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

More to come….

*Photopheresis

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

 

 

365 days

theycallmebetty7 Comments

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

 

 

 

It’s TIME!!!!!!

theycallmebetty19 Comments

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

But something is nagging me.

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

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

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

Almost too great!

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

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

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

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

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

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

ribbon

I’m back, where were we..

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

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

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

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

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

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

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

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

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

Oh yes there is a number 6 to my request.

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

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

 

 

 

 

 

Rambling, for the love of God, I am rambling!!

theycallmebetty20 Comments

Yesterday, from the passenger side of my truck while Cody drove, I slowly raised my feet and stuck them out the window to rest against the mirror support. Seat back, shorts on, flips on the floorboard my feet hanging out the window feeling a warm breeze running between my toes while I watched the world travel by at 65 mph.

I felt 16

(From here I start rambling, please forgive me)

My mind wandered to a time when I had no cares. My biggest worry was whether or not I could earn enough money during the week to keep gas in my truck or purchase lunch or help pay for beer. I worried constantly about how much trouble I would be in for poor grades or not coming home on time. I worried about a kid who felt like he wouldn’t live to see 25. Life was good, life was free.

I never understood just how free my life was.. Everything when you are young is important, blown out of proportion, lost in the minute. You behavior is strewn with emotions, feelings that you really have no control over! You are loud and obnoxious, hyper and animated, life is just beginning to open up for you to explore with not only yourself but your closest friends as well. You just want to make a difference, be taken seriously and to be heard! You really don’t know what you want to become or who you are but you cannot wait to find out. You look forward to the future.

I am turning 50 in roughly 10 weeks the future is here and I still don’t know. I still feel deep inside as though there is more!

My life has become heavy, tiring and I can’t think straight. There is so much to do around here and I just don’t want too. That is not me. I don’t know who I am, or what I want to be when I grow up and I wonder how to convey that urgency to my children. Luckily they all say they know what they want to become, hopefully they are right. I am depressed. It is hard to admit but I think I am. Writing this right now, my heart hurts and I want to cry. I want to hide. I want to go camping and not come back. I want to run into the woods like a spoiled child avoiding their parents when reprimanded! I want to disappear. Disappear onto the Pacific Crest Trail hoping to find myself once again. To feel the confidence I once held at 25.

But I cannot, life gets in the way doesn’t it?

For a long time now I have been pushing my feelings down, shoving them deeper into some void, doing my best to keep one foot in front of the other, smiling, hoping, and trying for everyone. My wife is my world, she has been my friend, confidant, lover, and advocate; of course no marriage would be complete without her also having been a staunch, frustrating at times adversary. But in the end she has always been there for me in one way or another and these last 14 years.  I too have been there for her (even more so these last 24 months) and continue to do so taking care of her anywhere, anytime.

I am a convoluted mesh of emotions. A walking mess. I cannot sleep yet when I do I cannot wake up. My stomach hurts all the time and it only stops when I eat, so I eat, a lot. My inner self hurts which makes my outer self-hurt as well. Exercise was once an escape, now it pains me to walk to the corner and back. I haven’t worked a horse in almost a month, it has been easier to have others do it for me.  There is so much to do, so I choose to do nothing at all. I am a whiney complaining, ball of self-doubt. I cant seem to escape.

But as I write this, I know what I am going through it not ok, but ok at the same time.

To everyone who will undoubtedly dissect my inner emotions, claiming I need therapy or some form of self-help assistance. I know these feelings are ok. Not healthy, but ok none the less. It is ok to feel the way I do, yet knowing doesn’t help me right now. I was raised to not complain, to cry only when it really hurts, to rub dirt on it and walk it off. So even sharing this with all of you is painful and embarrassing to me. It admits defeat and leaves me fearing being judged. I know I have lost nothing, I know there was no competition for me to lose at, but the man I have grown to become, laid upon the fondation of my upbringing feels confused and utterly defeated.

If there was some way to clear my head, to take away the confused, angry, afraid, emotional, distressed feeling I wake up with every day? I would do it in a heartbeat. But unlike a computer I cannot hit delete or save as and place it neatly in a folder labeled “crybaby” for future reference.

I wonder how many people struggle on a daily basis with trying to overcome these types of feeling inside their heads. A feeling of hopelessness, like you can never get ahead, achieve solitude or even make it through the day successfully without just quitting? I wonder how many turn away from friends and family finding alternative methods hoping to quiet the voices of despair. I wonder how many pray at the beginning of each day to feel as though they can take on the world again.

I selfishly wish to fall asleep and wake up to my wife pre-leukemia. Not for me, but for her. It is tearing me apart inside watching her hurt. She hates looking at herself in the mirror, she wants so desperately to be her old self again. She cries at the thought of only having enough strength to get up and down the stairs once or twice during the day. She is terrified at each and every visit to Stanford that they will tell her it’s time to be readmitted into E1 for long term treatment. She is sick of feeling like a prisoner in her own home. She is exhausted from everyone telling her what to do or how she should live. She is horrified at what this has all done emotionally to our family, friends and most of all her children. She just wants so desperately to get better, to be better, to excel the only way Jacy knows how! She is and always has been a winner! She isn’t feeling that way right now. It is tearing her down.

She misses her students.

I cannot begin to explain to what depths this woman misses her students! It is as though a piece of her has been amputated. She can feel the appendage as if it was still there, but she can no longer see or touch what was once hers. It has handicapped her spirits, her self-worth, and her ability to thrive inside. Every moment she is alive, she believes is one more step towards having a classroom to herself once again. Every moment her body takes a step backwards she feels it slipping from her grasp. I will never forget the moment she was offered a job at this school. We were in Vegas, the phone rang, and she answered, five minutes later she was bouncing off the walls! I can honestly say it was one of the happiest moments I can recall. These children, your children, the children of people she doesn’t even know, they all breathe life into her! You see them as your children, she sees them as our future. Each and every little personality there to grow, expand and blossom simply by being themselves.

This has and continues to be a long arduous journey. I guess all this rambling comes down to a few points. Thank God for everyday. Even though it doesn’t sound like it, I am thankful for each and every day. I get to spend them surrounded by my wife and children. I can never take a day with her or them for granted. You never know what you can handle until it is time to step up! Every day is a challenge for me right now, but I am making it. Some days are incredibly harder than others, but I am still here.  Jacy is handling it, some days are incredibly harder than others, but SHE is still here! At the end of the day sometimes that is all that matters. Know you are not alone! I have my writing, but I also have prayer, and a huge support network. I still feel alone at times, but I know I am not! When your day is shit! Just remember things could be worse. Look around on the inter-web, there are plenty of people who have it much worse off than you or I. Last but not least, thank God for faith, otherwise think of how hard this thing called life would really would be.

To the (three) people who actually read my blog. Thank you. Thank you for allowing me to ramble incoherently as I did today, to share my thoughts and feelings without judgement, to simply be. Today’s posting held no real significance other than to purge my endless inner long winded musings along with some of what is painfully shoved down deep inside hoping to offload enough that I may gather my inner Betty once again.

Betty loves you all….

Oh how the wheels turn…

theycallmebetty1 Comment

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

 

 

 

 

 

Can you hear me now?

theycallmebetty3 Comments

In my twenties I never thought much about life and what it held for me. Every day the sun rose I tried my hardest to earn the respect of those around me. At that age you just want to be heard. Your ideas, thoughts, designs, you just want to be equal with those around you. To show the world that you are not just another dumb kid. Of course not helping matters much my looks were far younger than my age, therefor anything that came from my mouth was treated with kid gloves, quite literally.

Some life changes came and into my thirties a family was started, a career blossoming and again I yearned to be heard. The problem? I was the older guy as most in my profession started young and had already promoted to mid-level or even officer ranks. During that time I learned about fatherhood, gained some maturity and just when things started looking my way I also learned a lot about death. It was a challenging time and still no one was listening.

Welcoming my forties, our family grew, my inner child faded away as motorcycles, boats and fishing tournaments slid to the wayside for coaching baseball, and raising/riding horses. Trips to Haiti for humanitarian reason filled our summers, helping us grow as human beings and rodeo soon dominated our lives. For once in a really long time things felt as though they would look up, our family, especially myself could or would find contentment in life. Then came Leukemia, cancer, and a Bone Marrow Transplant. A very sick wife was struggling hard, fighting for survival and once again I found myself yearning to be heard.

This time it was different.

You see before, I longed to be taken seriously for whatever I may have learned along the way. Wishing those who I surrounded myself with would just listen, understand that maybe just once I actually did know something and could be thought of as equal or even a peer to someone new.

Over time I stopped yearning to be heard but instead chose to listen. Listening is one of the most important traits we can learn as a human being. Listening allows you the opportunity to feel empathy, compassion and love. Three of the best human characteristics we could possibly have or share with others. So I listened, and listened some more and I learned to love by not saying a thing. To empathize with those around me and show great compassion to those less fortunate than I. Listening gave me an opportunity to engage my brain instead of my mouth. Insecurity feeds a rapid fire mouth while silence often times shows great strength.

Now as I am but a few months away from my fifties I am yearning to be heard again.

My wife is struggling with all that has happened to her. She has been a pillar of strength for so many including myself. There is not a day or moment within the day I do not think about her. Alone, in her chair, or upstairs in bed, wondering, asking God why this happened to her. She has survived so much and yet she feels as though she has lost just as much as she gained. A woman who thrived in our barn, was an angel to so many children within a classroom setting and my best friend is still patiently waiting for things to get better. We are one year since chemo and one month away from her transplant. We are three weeks away from when she left the house for what was supposed to be at its worst no more than four months. It was eight months instead of struggling to survive. She is trying her hardest, but most days leave her incredibly exhausted and unable to move. She may have two good days and four really rough days. Her body is fighting her at every turn. She looks up and smiles at me but we’ve been together for 15 years and I can always tell when there is something hiding behind that smile. Some things she just can’t say, but my heart knows what they are because I have listened. 

So to my wife I hope you can hear me because this is what I have to say.

I love you.

I have loved you since they very moment we kissed. It was a confusing time, a scary moment but an inner sense told me it was supposed to be.

There is something about your personality that is mesmerizing. Like staring into an oasis after a long hot journey across the sand. You are that safe comfortable place so needed after such long travels.

You haven’t changed; your caring shines from the inside of your soul. I have yet to meet anyone who doesn’t instantly feel comfortable around you.

You are the devil when you are angry. But if you weren’t my strong personality would roll right over you and that wouldn’t be good for anyone.

I could never imagine a day without you. Just like chocolate

We have four super fantastic pain in the ass children who love you! They are frustrating and amazing all at the same time. They also have no idea just how serious ALL of this has been and because of that they can be a bit selfish at times. But remember, they love you. They show it every day by not doing their chores, arguing with you about homework and treating you like its days of old where you would pick up after them.

I am scared to death but refuse to show it to you. You have enough to deal with emotionally other than dealing with my fears. This whole thing is so unnerving and yet watching you fight so hard, how could I ever tell you I am scared as well.

Quit worrying about what GvHD has done to your outside appearance. I know its difficult, and I understand you miss your old body but; I love you, the person who is you, it doesn’t matter to me what you think you look like because when I look into your eyes and the smile lines under those eyes relax for just a moment, you are there, whole, kind, caring, soft, understanding and as beautiful as always. I only see you..

I don’t know what the future holds for us, for you. I will not pretend I have the answers anymore. This whole thing sucks, it is painful, emotional and at times beyond comprehension. But I do know this; There is no one on this earth that I would rather be with. I am thankful every day that you chose me for a spouse. Yes it is hard taking care of everything without my partner in crime but I got it. I am doing the best that I can and the only reason I am doing so well is because of my love for you and my faith that God is watching and has a plan.

So please my dear wife ease your worried mind, have faith, look into my eyes and know I will always be by your side, helping you any way I can; Loving you and cherishing every moment we are together. Lean on me all you need, and rest when ever you want.

For every day is a glorious gift from God.

. .