Let’s go, let’s show, let’s rodeo.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It was a perfect weekend.

 

 

 

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I met a woman today….

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

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

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

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

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

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

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

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

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

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

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

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

So to the woman I met today.

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

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

My heart is full.

 

I can’t…

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

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

And that’s where this posting truly began.

Betty, why haven’t you been writing?

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

What was my answer?

Because I can’t…

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

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

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

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

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

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

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

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

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

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

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

Could I be like her?

I can’t………………………..

 

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

Ok, I’m done. I can’t write anymore….

 

 

 

 

Fear

Let’s talk about fear.

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

Traumatic events?

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

A change in behavior?

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

Induced by perceived danger or threat?

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

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

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

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

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

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

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

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

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

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

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

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

The ambulance came.

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

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

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

Where’s mom?

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

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

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

I hate fear.

August 13, 2016

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

More to come….

*Photopheresis

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

 

 

365 days

One year-365 days

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

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

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

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

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

But it has not come without a cost.

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

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

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

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

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

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

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

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

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

 

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

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

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

kids

 

 

 

It’s TIME!!!!!!

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!

 

 

 

 

 

Can you hear me now?

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.

. .

 

The Journey

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

Where to go, where to go????

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

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

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

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

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

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

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

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

bobs bench

 

She fights

Every morning she wakes up between 4 am and 0930. Her sleep is not natural as pills determine the night or days slumber routine. Weight is something she cannot gain and although there would be some envious of this side effect it is anything but glamourous. Her eyes work somedays while others they are filled with a blurry focus similar to gazing through a plastic milk jug. Her breathing is labored at times and she needs oxygen throughout the day and night to help keep her lungs strong. Pain is everywhere and nowhere, moving from an arm or a nervous leg to her back, sides, head, teeth and eyes. Medication is everywhere, we have pill bottles around every corner (figure of speech) waiting to either empty or crack open in dire need. 23 little pills, swallowed three times a day. Each pill with a specific purpose, each pill supporting another as they cross paths within her tired system.

Each day is a new adventure, wandering from upstairs to down. There are moments of greatness! A trip to the basement, or a stroll to the tree outside, down the road. Muscles yearning for mass from not that long ago, arguing with her central nervous system over usage, proper form and desire. Prioritizing each need hoping it can guide her successfully towards a much needed strong finish.

The garden yearns for her touch, her flowers and fruit trees scream for attention! There is one big draft horse and its little Donkey friend who stare at the house wishing she could come out and play. Little do they know she stares right back?

Her teaching job calls to her as she misses each and every child who ever graced her classroom door. Their quirky attitudes, laughter and stories, making each day special in its own way. Instruction, knowledge sharing, testing, creating, and showing each child no matter their background that her classroom was always a safe place to be, a wonderful place to learn.

Friends come and go, happy to see their friend has made it to this place of reclusion. She moves about between the kitchen, living room and bedroom. Little stints in each area much like a 7th grader changing classes. Sitting just long enough to learn and appreciate either her surroundings or emotional moments shared between herself and her children. She laughs and loves to have endless conversation with her friends. She knows she will pay for it as with any two hour visit there is a three hour nap post get together with her pillow. But when she awakens she smiles, for a visit is something special when not more than three months ago there was talk of her not surviving.

She longs to be free. Free from this damn GVHD! Free from this home that has somewhat imprisoned her for hours on end. She longs to hop in the car and drive herself to the fabric store, feeling that independence so taken for granted not that long ago. Oh occasionally she spreads her wings and drives to a softball game, or over to the produce market. They are after all straight shots and if her eyes get to bad I am but a minute away. But it still isn’t the same.

The feeling of exhaustion from walking to the car, shortness of breath after lifting a couple bags or fruit, closing the cars hatch and finally sitting back behind the wheel. This is a mental war with her physical being that’s being fought and has escalated rapidly. There are times she wishes she could just tell herself to knock it off and get with the program! This runner, swimmer, biker mom who could out move most people on their best days now needs help just to get up the stairs. She is cooking dinner again and slowly starting to do laundry (because she wants too!). Anything to make her feel normal, like nothing has happened and life is just as it was or should be. She is sewing and drawing which are two things she very much enjoys. She is constantly trying her hardest to gain just a little more ground. No matter what that ground may be.

People constantly ask me how she is doing. My response is always the same.

No better, no worse, just one tough lady who is happy to be home.

Jacy survived chemotherapy, she survived remission, then recurrence; she survived chemotherapy once again and then watched with the strength of a thousand draft horses as a new immune system entered her body during a BMT transplant. She has survived every GvHD (Graft vs Host Disease) complication known to man and lived after putting her big girl panties on willfully accepting a new trial drug to combat her symptoms. Her doctors tell us each time we visit that we are in uncharted territory. She was not expected to survive but when asked what her thoughts were she said; I am not leaving my family! End of story! You can do what you want, but I am not leaving my kids or my husband.

And she hasn’t.

My wife has always been a fighter. She fought for our relationship in the beginning, she continually fights for our children; she fought for our daughter and fought for hundreds of children in Haiti. She fought this thing call Leukemia and now fights GvHD. She is currently fighting a bit of trapped in the house depression, along with an ability to hold onto hope for herself and her future. She fights against the elements, hoping one little organism isn’t out there with her name on it, waiting to attack! A nasty little bugger giving her something else to fight for with her back up against the ropes. She fights for herself and her need to succeed. She fights because that’s who she is and what she does well. She fights while keeping a patented Jacy smile affixed firmly upon her face.

She fights to come back to church, and pray.

She fights to have some semblance of her old life back.

She is my hero and that’s why I will always fight for her.

jacys hand

 

 

 

 

 

More….

Grass glistening under the morning sun I can almost feel a damp chill through the outer liner of my boots. There is so much to do here on the ranch, something I’d taken for granted prior to Leukemia entering our lives. Every day waking to a cup of coffee, a list of projects, horses that need riding and good close friends who share my love for our equestrian lifestyle.

Life was slower, moved more efficiently, our time allotted carefully with separated responsibilities tackled by two active adults. Yes it wasn’t always perfect, there were collisions of schedules and an occasional finger of blame pointed in the others direction for absence of responsibility. We thought; how could life possibly be any busier? Oh how wrong we were.

Today, I have nowhere to be, (a rarity) the list of stacked up chores is overwhelming. None of these written down labor intense segments of self-importance are of any severity in the grand scheme of things. But the sun is out and even sitting here typing now feels like a guilty pleasure for which I should not partake. My wife is asleep. She doesn’t really sleep all that well anymore. Her medications are leaving her on a revolving pattern of slumber that is tiresome to watch. I spend as much time as I can inside the house making sure she is ok. She has so many medications taken daily it blows my mind at her ability to keep track! But she does, and often time after double checking I’ll find she is to the pill in her counts. We have Oxygen tubing running across our bedroom floor as she needs a consistent O2 boost so her saturation levels remain above normal. Feeding her has become difficult as these little pharmaceutical wonders leave her stomach tied into a burning knot most of the time. When she does eat it’s an egg sandwich, just toast or on really brave day’s carrot cake. She is doing well getting up and down the stairs, but prefers and wisely so to have someone with her when she does.

Somedays she stares blankly out the rear window of our little ranch house; to say I wonder what’s on her mind would be a false statement. I know. One doctor telling her to stay inside, another telling her she shouldn’t even be here at the ranch, it is to dangerous, while a third claims the occasional trip across the grounds couldn’t hurt. It’s a conflict of emotion, an experiment in mental strength, a dichotomy filled lifestyle. Does she risk it or watch from the bleachers? Should she enjoy what’s in front of her peering through a “boy in the bubble” perspective or run with abandon into the countryside? There is more, there is always more and when you have stared at four hospital walls for 8 months you pray to the heavens above for more. Once granted you now stare at four household walls and you pray for even more! More time with your children, more time with your husband, more time to be outside with your animals, more, more, more! To many opinions, to many rules, to many drugs, to many trips to the hospital to many restrictions, yet only one life.

Outside the birds are pleased, blue skies above them, food is plentiful below and they sing with glee. Our brood of horses’ knicker and snort at the prospect of roaming green fields. Four dogs have all found places in the sun, soaking up its brilliant heat and not one barn cat remains inside the barn. The air cool and crisp, combined with those warm rays of light makes for a glorious day to be in a right here, right now frame of mind. A solitary moment, to myself, outside with my eyes closed tight selfishly dreaming of the way it used to be, the way it was. A small pebble under a giant blue sky standing here calmly taking it all in, occasionally looking out across our property while absorbing its natural beauty my smile comes on the weight of heavy shoulders as our once normal life has been replaced by these solitary random moments.

I wish there was more…

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