Tag: AML

The Journey

theycallmebetty2 Comments

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

theycallmebetty6 Comments

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….

theycallmebetty4 Comments

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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The scary stuff…

theycallmebetty4 Comments

The scary stuff hides in plain sight, we try our best to ignore it but in reality the scary stuff is what lets us know we are living.

I am terrified of death. It surrounds me with in your face realism, implication and pure dishonesty. Lying in bed, staring at the ceiling wondering when it will come, how it will come and have I done all I could to let those I care for know just how much they mean to me? Have I spoken a word in haste leaving someone disappointed or was I able for just a moment to make someone’s day?

Do you close your eyes and feel all the world has to offer or do you clench your teeth frustrated by the very movements within your realm? Do you drift away from the sight, sound or smell of another place thankful for having been there or do you grasp tightly to the past angry at what the future holds in store?

I cannot control the panic within, a feeling there is something more and I am running out of time. That I haven’t lived to my full potential, achieved all my dreams, helped all that could use assistance, or been the best human being I could possibly be. My brain runs out of control and there are moments the thought of trying to stop it long enough to grab any form of tangible information to act on is overwhelming.

So the scary stuff creeps in, like a game, toying with my ability to reconcile myself.

I stare at my wife while she sleeps, scared she won’t be there in the morning. Two years of this nightmare have worn away my ability to be realistic about things at times. Watching all she has gone through and yet she still tries to smile, to have a positive attitude, even when she really doesn’t want to anymore. Being at work is an eternity as my subconscious leads me into a room of dirty tricks. How is she? Why won’t she answer the phone? Has she taken her medications? Are the kids helping her? Is she eating enough? Has she walked today? I know she is ok, she has her phone to call me, and my mother is right next door, able to check in at a moments notice. I know the kids are helping and our close friends/family are doing their best, but the scary stuff keeps pushing my insane fears into the light so I may remain bewildered and lost.

Stressed beyond what I ever felt I could handle, my stomach, head and neck hurt all the time. I have ridiculous nightmares always revolving around the loss of someone near me. Last night it was one of the boys in a vehicle accident. The scary stuff lurking in my brain won’t let me gloss over anything in a dream either, its graphic and designed to always leave me terrified upon waking. The scary stuff knows how to leave me down and out through shock value. I am tired… All the time….

What do I do? How do I control it? It feels at times like a giant weight upon my chest. Somedays I can’t breathe and find myself sobbing for no reason at the very stupidest of things. Like an imaginary scary creature hiding under my bed, only I know it’s there, only I can feel its presence, and only I can battle it when it comes out at night to play. It is my burden to bare.

The scary stuff is what tears at your soul, leaving you scarred, hurt, but alive. We all have scary stuff lurking in our brains, without it we would never understand the value in cherishing every moment on this earth. For the good stuff is even sweeter if you’ve had to deal with the scary stuff life is made of.

I wrote this tonight because many have asked me repeatedly how I have been able to handle everything through this Leukemia/Bone marrow transplant infused portion of our life. Truth be told, many days I don’t! I do my very best to juggle everything while keeping a smile on my face, sharing a joke here and there, trying to keep my children smiling all while letting my wife know she is the very center of my universe. I vent a lot on friends and I believe in having faith! God looks over us all and challenges us daily, it is up to us as too whether or not we accept those challenges. There is always hope, and even though the scary stuff is a reality in my life, my way of never letting it win is by writing about the fear so others who read this know its ok to feel everything I just described. If you take time in recognizing your flaws, sharing your pain and understanding there is always a better day ahead, the scary stuff doesn’t stand a chance. It may not be today or even tomorrow, but faith is there waiting to put the scary stuff we all feel and worry about right back under the bed where it belongs.

 

 

 

Have you ever heard???

theycallmebetty2 Comments

Have you ever heard the cry? It’s a voice inside your head that won’t leave you alone. A mash of emotions trapped inside with nowhere to go. The voice is always there, begging, nagging, wondering, encouraging or discouraging depending upon the day, but do you hear it? Do you hear it cry? It cries for freedom, it cries for solitude, it cries for exhilaration and it cries for despair.

Have you ever told it to just shut up? To leave you alone? Do you find yourself arguing with it while driving in the car? Does it make you crazy just when you feel life isn’t crazy enough? The voice cries out, yearning to be heard but you swallow it down, forcing it into a state of mute while smiling on the outside hoping no one around you hears its needs. Have you ever heard it cry?

Over the last two years my life has been blessed. It has been hard, it has been emotional, it has been; well it has been hell. But through it all I have been blessed to talk with so many people and touch so many lives. To share correspondence with just one person walking in the very the same shoes makes every moment staring at a computer screen while typing my life to the world worth it! All I have ever wanted is to share, to explore and to help. To hear my inner voice cry.

During any time of hardship or struggle there are always those looking to find something wrong with you? Its ok, it’s not that they or anyone else is doing something wrong, for the most part they care and are trying to help the best way they know how. To intervene. We are all taught to intervene from the time we are children, but what we are not taught is what to do after we have intervened. You see I believe every person is different. People handle things differently, they handle stressors differently and it’s ok. Just because someone is not living up to your expectations of how, where, when and why they should behave doesn’t mean they’re doing it wrong. It just means those of us choosing to intervene, whether it be loved one, family or friend, need to broaden our horizons learning to accept and understand. For you see that wounded person is listening to their inner voice cry.

Maybe they have never heard it before, this inner voice and this new found annoyance keeps them up at night, or maybe it’s always been there but now that person is listening, hearing the voice and understanding its hunger to be heard. Hardship, or tragedy has turned up their hearing aids. Either way, it is that person’s voice to listen too, and they will listen to the point of acceptance or denial. During these times of trial this person may need nothing from us or they many need complete and total support, but believe me when I say, the inner voice is crying out and it’s running the show.

On a particular day when things weren’t going so well I found myself in a full blown argument with my inner voice. Long list of things to do and I felt as though I was losing the battle. In the middle of it all I glanced into my rear view mirror to see Parker gazing off into the distance with that faraway look reserved for those who have checked out from their current realm, entering the wondrous Walter Mitty world created in our heads.

I asked; Hey Park do you ever answer the voices in your head?

He smiled without breaking his gaze out the window: Why yes I do.

How many voices are in there little buddy?

Only one dad, but there is room for more!

With that, a sly smile and a gleam in his eye, my dry humored, wicked smart eleven year old boy let me know he understands.

So when you hear the cry from deep inside, don’t ignore it. Listen, that voice may be your savoir or it just may be the only one who is listening at the time. Either way over the last two years I have stopped pushing it down deep inside, acting as though it doesn’t exist, and because of that, my inner voice has been able to put pen to paper as it were for everyone to know the true, what, where, when, why and how.

Ms. Jacy is hearing her inner voice cry as well! It is screaming to heal faster! As though the Bionic Woman were trapped inside just waiting to roll out that super human strength! Yesterday we walked, climbed some stairs and tried to make it up her dad’s driveway a bit. She did great, but as with any exertion for her at this stage it came at a cost. She went in laid down and drifted off to sleep. Her medications leave her pretty well zapped. The bladder issue has not resolved itself so Platelets and blood are still the order of the day. She has an IV pump tagging along with her where ever she goes and there are 23 medications consumed three times a day. UGGHH!!

But here is the best part. She is no longer in the hospital. She is able to nibble on regular food and this makes her smile. Although she definitely does not like being told to what to do when it comes to her nutrition. We spend a lot of our days talking about the future, being thankful for our amazing families and sleeping. Yep when I am on Jacy duty I actually get to sleep a bit, something my body has been lacking for a very, very long time! It is nice to be back next to my girl.

The kids had a great winter vacation. Thank you to everyone who helped make my children’s Christmas extra special! All my love to you all! The kids of course received the best present ever when their mom came home to her dad’s house. They stayed at Grandpas from the first of the year until late last night! Spending their days with family and their mom! Everyone was so happy!

So we move onto the next phase. Weekly trips to see Jacy on the weekends and closely monitoring her progress. She has her Step-mom by her side daily. Gina left her job to care for my wife and we are forever grateful for this dedication. It leaves our entire family at ease as we know how well she is being cared for! Everyone keep those prayers coming as we have a long road to go and I firmly believe it is because of all your prayers we have made it this far! God bless you all.

Time to go, I hear my inner voice crying…..

buckle up

What????

theycallmebetty6 Comments

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Never in my life have I seen anything like this and trust me I have seen some crazy ass shit! Last night I came home from the hospital, distraught, worn out, fearing for my family, my wife and myself, for you see the thought of losing the very center of our lives, my wife, their mom was overwhelming to say the least.

So I put out the call!

I have said it before and I’ll say it again, I believe in faith! Now faith is a funny thing, there are those who believe it ties directly to the bible, some believe it is a feeling or an attitude, while others believe it is a positive energy randomly floating throughout the universe! Either way my beliefs are not what matters here, what does matter is as long as I can remember having faith in something is what’s kept me alive and running. Without faith in myself, in God (yes I am one of those) and in the ability to keep an inner positive attitude no matter the situation without disturbing anyone else’s emotional process, I could not have survived these 49 years. Faith has proved me right more times than not and when faith let me down there was always something to be learned from that experience.

Prayer warriors

Wow! There is definitely something about prayer warriors that is mind blowing! Everyone I could ever imagine along with their friends and friends I don’t even know, joined the prayer warrior cause! Last night and this morning I was completely blown away by the amount of people saying prayers for my wife! Even the Atheists in my group were hoping for positive energy to encompass my wife’s being! To say I was humbled by it all is an understatement! I personally believe in the power of prayer, there is something to be said about a mass of people converging their beliefs and energy into one combined focus to accomplish a positive result.

It worked!

That’s right ladies and gentlemen, it freaking worked!!!!! We went from end of days through the doctors own words to; hey there is a possibility you might make it out of this mess! That is huge!!! Thank you, thank you, and thank you!!! A huge thank you to every one of you who prayed, focused, thought or said a kind word while moving through their day. I have said it before and I’ll say it again, she is my world and to see how many people are in her corner is astounding!!!

So here is the gist of things!

Today her doctor came in to report the test results from yesterday’s exploratory investigation and it looks as if the bleeding has slowed down in her gastrointestinal tract. (YAY!) Her lungs continue to be an issue but they are not as concerned as it appears treatable. So after hearing the day before that her body needed to wake up and start working or else! We’ll that’s just what it did! The doctor then went on to talk about another patient who had similar issues to Jacy’s and after a year in the hospital walked out a free man! This man now runs marathons and lives a fairly normal life. Yes he is still plagued with GvHd issues but he is healthy, home and living life to the fullest!! Doc also explained that even though Jacy’s road is going to be rocky (paraphrasing) she has a shot at making it out of the damn hospital! Woo hoo! THAT IS ALL WE HAVE EVER ASKED FOR!!!!!

So to all you prayer warriors again I humbly say thank you!

I don’t care what you believe, there is definitely power in prayer, and positive thought! We owe it all to you guys! Everyone came together, praying as hard as they could and it worked! This morning I opened FB (Facebook) and was blown away by how many people took time to remember why they either liked or loved my wife! People were sharing positive memories of her and I must say, seeing some of you change your profile pictures to a memory or personal experience with my wife was so incredibly touching! Looking up from the screen it was raining, but only behind my glasses! I swear when this is all over I am throwing a huge BBQ, inviting everyone and I plan on kissing or hugging every person who has ever thought a kind thought or prayed for my wife! I spent last night dreading the worst and today I feel positive energy abounds!!! Jacy also feels as though a weight has been lifted from her shoulders, she is still scared of the unknown but there is hope and hope feels pretty darn good!

Keep them prayers coming people! Let’s harness all that positive energy and prove once and for all it just isn’t this woman’s time! She has plenty to do here still on earth and a husband who will stand right beside her!

Once again! Thank you all! I love you, Ill pray for you, and hopefully one day soon I will pay it forward!

Love is something special

theycallmebetty3 Comments

Yesterday I sat with my wife on her hospital bed. Leaning into me we listened to others talking in the room and I staring longingly at her once again realized I am a very lucky man.

It is very easy to fall in love. The world is filled with interesting, beautiful people who intrigue and excite our lust for closeness. Each person’s definition of love is different, thereby allowing varying levels of intimacy amongst those parties involved. There is love acquired over time, love by design, and love at first sight. There are people who know a particular person is the one for them right away and while pining away for their affection develop love through mutual interests. It takes a special person to not only peak those interests but keep them thriving. A person who is willing to walk side by side supporting and surviving every possible situation one could develop or live through over time. For you see, love is not for the faint of heart or quitters.

There she sits. Yesterday while staring at her it came to me that I missed her more than I let on at times. Everyone at the hospital gets to hear her laughter, see her smile and relish in her constant silliness. All the things I took for granted or at times bothered me because of my own selfish moodiness I now longed to have back in my life on a daily basis. I was actually jealous of their ability to bathe in her good Karma.

Today someone sent me a picture of an actress on a current show (I won’t give the pleasure of repeating its name because this show is sheer poppycock) and stated she looked just like my wife! I dismissed it and then after coming back to this picture three, four or five times it dawned on me they were right! Just like that my selfishness missed her hair, her eyebrows, her eye lashes, and her round face with make-up, wearing a slinky dress on date night or goofy overalls on the way to school! I miss the way she smells, her choice of lotions always leaving her skin smooth and soft. I miss her holding me tight while dancing, whispering in my ear “I love you”. I looked at the picture of this actress over and over and I yearned for the wife who at one time didn’t have Leukemia.

I am a very lucky man

Most people felt that way at one time in their relationships but having grown used to their partners they no longer feel a longing deep inside for their significant other. Time, life, work, children and school have robbed them of time they should have spent with each other, instead creating a divide and conquer relationship which ultimately leads to a divided relationship.

I long for her to come home. I hate leaving the hospital, I want to stay there all the time. To hear her laugh between coughing and vomiting. To watch her smile even though the news she has been told sucks. To hold her hand even when she feels as though she is a thousand degrees. To walk with her down the hallways even though she must have help from a nursing assistant. To sit and eat lunch like two old people with no teeth! She with soup and me complaining there isn’t enough candy in the drawer.

In the past we too were a divide and conquer relationship! I divided to conquer and she wanted us to handle things together. She never gave up on me even though there were many times she could have, many times I may have needed to talk her into one more chance, she calmly continued loving me. Stubborn and tough she never ever gave up, she always knew that even though I was going to fight, kick and scream, I would come out the other side, wiser, gentler and more giving.

That is why it’s my time to be there for her! I know she is kicking and screaming on the inside! So I keep her going, telling her it’s going to be all right while showing her how to remain calm, think things through and understand there is a better tomorrow for her waiting. When this is over and she comes home she will have known I never gave up on her, I calmly helped her to understand it is ok to feel sad, ok to feel frustrated and ok to want this all to end as long as you vent it all out and then restart towards the finish line. She is fighting hard, but she is not fighting alone. She is not superwoman, she did not become the fighter she is today without losing a few rounds in life. She will come home knowing I love her with all my heart and soul, and I am thankful for all she has given me.

Our lives will never be the same. Leukemia has made sure of that. But what our life will be has yet to be written. An open page awaits us and as much as I long for the wife of days gone by, I cannot wait to see what life has in store for us as a team, a couple, as friends who are lucky enough to be married to one another.

Like I said; it is easy to fall in love, staying in love is something very special indeed.

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It was a very good day..

theycallmebetty5 Comments

mom and parkerStrolling into the quad my daughter, son and I all turn the corner to see Jacy taking a breather from walking during physical therapy. Standing quietly we wait a second as to not startle anyone. Jacys mom see’s us and starts squealing with joy. Mom is happy. Out of breath, mask covering her face you can see smile lines around her eyes as they struggle to fixate on two small silhouettes. Our children each take turns hugging her then wander over to the rolling chest of body isolation gear to begin the arduous struggle associated with a 10 and 11 year old trying to don these items. After a few minutes and what appears to be a 3 ½ foot high stellar version of Tommy Boy’s Fat guy in a little coat, my son puts both hands in the air with medical gloves on and says; doctor? Yep it’s going to be one of those visits.

Once inside Ms. Jacy’s room she claps her hands with joy as her children lay a little more love on their long lost momma. Questions about school, life, sports, rodeo, the ranch all flow freely as a mother needs to know exactly how her children are faring without her. Yes I have kept her abreast of every activity, function and behavioral (both good and bad) condition associated with these two monkeys. But it means so much more hearing it directly from their mouths. She is beaming.

Jacy lets the children know how happy she is they are there, gives them a simple version of her current condition and apologizes for the fact she cannot see them very well. Her eyes are back on the blurry side which makes for a lot of squinting while searching for each person’s location through vocals. Both children ask a few more questions followed by laughter and silly kid actions, afterwards things begin to settle down. Good thing as there isn’t much room for horseplay.

Now I remember being a kid and a hospital room was the last place I would ever want to be! Parents telling you not to touch anything, to quit making so much noise, to stop touching each other and above all else quit fidgeting in those chairs! Today would be no different as most of those words came out of our collective mouths at one point or another. Yet they smiled, acted as though a behavioral modification had just occurred while finding a new way to fidget or make sounds.

A suggestion was made for a trek outside and with her nurses blessing we loaded up then traveled to the fountain. The fountain is a wonderful meeting place. Water flowing, plenty of shade and ducks traveling around unmolested as if they owned the joint. We almost didn’t make it there as while pushing Jacy through the lobby doors in her wheelchair the I.V. stand became ensnared in carpet almost crashing to the ground! Fast hands by both Jacy’s mom and a nice lady who happened to come through the door at that exact moment saved the day! Jacy was a little frazzled after that interaction but a few deep breaths and her anxiety quickly waned. After all when you are this close to the outside as a prisoner you don’t let one little bump in the road keep you from freedom.

The kids ran around, the adults chatted away, at one point her mom went to get her a paper mask so we could hear her better as she spoke. Parker would come by just to get a hug and say hello, then run off to play with his sister. We had 30 minutes and we were going to make the very best of it.

Back in the room Jacys mom said goodbye, spreading more love on the munchkins’ and a big old hug for me. Once her mom left we all settled in, found a movie and silence fell across the hospital room. An hour and half went by, not a word was uttered, and we just sat there, like old times, at home, watching a movie together as a family. It wasn’t the most perfect of settings, it wasn’t the best TV or the highest quality sound system. But we were all together, it was perfect.

It is always hard to leave. When I am here alone it pains me to walk out the door, but when the kids are here it is doubly as hard to say goodbye. They are all good sports about it, their mom no matter how hard she tries to look positive always has a little sadness showing around the eyes. I cannot imagine how she feels, what is going through her mind, how her heart must break every time they close the door behind them. One week to three weeks, that’s how long it is between visits from her children. She gets me two or three times a week then her step-mom, mom, sisters and father fill in the remaining gaps. A virtual revolving door of family making sure Jacy is never alone. But your children, they hold a special place in your heart and they definitely hold a special strength when it comes to the healing process.

By the time we got home they had been asleep in the car for quite a while. When we walked out the door of Jacy’s room she too was fast asleep within moments of our departure. Looks like everyone got all the love they needed. Squeezed, kissed and hands held to exhaustion.

It was a very good day indeed.

Hi ho, Hi ho, its off to work I go…..

theycallmebetty1 Comment

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It felt strange pulling into the parking lot and I have no idea why. I have stopped by a hundred times over the last few months, yet walking into the building it was as if a giant weight had been lifted from my shoulders. Moving effortlessly down the hallway with the lightness in my step of Danny Kaye (only us old timers will understand that reference). I opened the door to our day room and was instantly greeted with the boisterous banter of a warm firehouse. The back and forth one liners that are often associated with this type of setting are what in-house legends are made of. My smile broadened.

Individually guys would walk up to say welcome back, I greeted them with: hey I am the new guy James, nice to meet you, division sent me down so anyone know where I can put my stuff? A couple good chuckles were had, I grabbed a hot cup of jo and sat in a very familiar chair. I was home again, with people who have supported me as only family could. Sighing a very heavy sigh, at that very moment all felt right with the world.

Friday was my first day back in the firehouse and I was shocked at how much I missed it, all of it! The chores, the calls and of course the guys! Two months are a long time to be away from work, let alone people you consider your second family. But here I was, knocking the dust from my helmet, going through my turnouts and checking all my gear. I was smiling, actually smiling and feeling the warmth that came with that smile. Gone for a few moments was all the worries associated with my life, it felt great.

That feeling was short-lived as before we started our day I gathered everyone around to give them an update on Jacys condition and where we were in regards to treatment. It was an awkward silent time. I understood. What do you say when a co-worker/friend gives you that much information? They all feel my pain and understand it is very difficult for me to adequately express those feelings while meeting everyone else’s emotional needs. But one thing is always a constant when it comes to this family, each one has my back, as I would have theirs in a similar situation.

We ran calls, did chores and by mid-day ended up downtown for the annual Downtown Business Association Halloween hand-out! How fun! Handing out candy to hordes of kids all dressed up in their Halloween costumes! Meeting people, talking with kids, joking around and generally having a good, old-fashioned normal day, as if nothing else was happening in my life.

That night was hard. I didn’t sleep well, tossing and turning in my now unfamiliar bed. When I did sleep I awoke confused, disoriented and afraid. Worried that something bad was about to happen, scared that my kids needed me, panicking over an inability to just drop things and leave in case the phone did ring.

The second day was fine and the second night not much better. My worrying seemed to be getting stronger, I consoled myself that there were only 6 or so hours left and that my children can make it without me. I have raised them to take of themselves and I know Cody will do a great job! Hell in the 1800’s dad would leave the 8-year-old in charge of the 6-year-old for a week! It all turned out ok most of the time, right?

When I got home the next morning my overall feeling was of relief. I had made it through a 48 hour shift without losing my mind. I had proved to myself it could be done, that letting go of some of my worries must happen. My heart was filled with joy over the reunion of my crew and the interesting calls we had run during our rotation. It felt good to have my mind and body back in a normal groove.

I spoke with Jacy this evening. Her prognosis is still the same as things haven’t changed much. She still smiles and see’s the positive outcome although we have started talking more about the “what if’s” with her doctor. I don’t like “what if’s”. They weigh heavy on my soul, leaving me nervous and gun-shy. Once the lights go down late at night after I say a prayer or two the “what if’s” start gnawing away at my insides. Eating at me, taunting me into believing they are real, testing my faith. It’s like they are a broken/scratched record playing over and over again in my head. Certain nights they bring me to tears as I drift off to sleep. I awake several hours later in a cold sweat, face and pillow soaked as they play out their dirty little mind games while I dream. I don’t particularly care for being the unwilling participant in these dreams so I struggle to stay awake staring at the ceiling and wondering why?

Faith is a tricky bitch. You must hear any and all negatives to fully understand and reinforce any positives. To have faith is to attest unconditionally that through faith only one outcome can become a reality. In turn you must suffer through many negative thoughts processes to achieve faith. You must sort them into categories, holding onto only those entrenched in reality. Once they are in a neat little folder wedged inside your mind you can proceed to judgement though careful, faith driven evaluation of any situation. The tricky part is understanding the importance of negatives while never allowing them to overtake your positivity based upon faith. Some nights that is harder than others.

Tonight as I write, the empty sound of my house is deafening. The dull drone of silence beats loudly in my ears. It is time to go to bed and I tire of my best friend not being there when I turn off the lights. Like a small child clutching their blanket or bear to keep away evil spirits at night; how I wish my wife was here so that just one night I could clutch her while sleeping peacefully, be protected instead of the protector, guarded from evil dreams continually questioning my faith. Only then could I awaken the next morning to find this was nothing more than a really long, extremely bad nightmare.

But that is not to be so I toss and turn some more, constantly fighting faithless thoughts in the dark while counting down the minutes until I can hold her again.

I love you honey, please come home soon….

She shines…

theycallmebetty4 Comments

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You pass by her or someone just like her on any given day. A smile, a wave, a kind hello. Sunlight radiates from within, bringing warmth and security to all who surround her. A light, a ray of hope, a beacon in the fog, an uplifting hand when you are down. She sees everyone and everything, never letting even the smallest of details, events, emotions, or troubles pass by her watchful eye. Why? Because she genuinely cares. Her storms can rage like the mightiest of hurricanes soon settling, defusing until rest comes upon a peaceful shore. Sunbeams litter the landscape in its aftermath revealing a renewal of all surrounding her. Of course this is what she wanted all along, for she knows exactly how to get her way.

Until now.

Jacy has been tempted time and again with promises of freedom only to have her body veto. She remains in room 41, locked away from the world she knows, the family she loves, the friends she adores. Doctors come and doctors go, all with the same agenda, to heal this woman and send her home where she belongs. It is not for a lack of trying, or because they wish to keep her secluded for scientific purposes, on the contrary, like any professional athlete these doctors hate to lose. They take their jobs very seriously and it shows. To make matters worse for this crew of cranial geniuses, they just so happen to like her. There isn’t a one of them that doesn’t like my wife and do you know why? Well first of all if you do know her personally then that was a moronic question. But if you don’t, if you don’t know my wife then reference the above material. For it is all true.

The other day when I arrived her room was filled with attending doctors and students. They yammered on about good news here and not so good news there, how if one thing happens we may have other options and if another happens how options would be limited. Covering bacteria, viruses, internal bleeding, and further medications. Standing in the corner gazing upon the herd like a pie eyed cowboy it amazed me that with all this information she still smiled and said; thank you. She made jokes about the bad and quipped about the good. She never ceases to amaze me.

Her light, her inner light is always trying to shine! The internal batteries may be faltering a bit but she somehow generates enough power to smile and say thank you, to everyone or anyone that will listen! She strains to speak at times but it doesn’t stop her. She is fighting so very hard to live, to move past this episode in her life, to come home and see her children grow up! Having now been incarcerated inside E block for 127 days, she inspires me daily. I hurt all over, I can’t sleep, I am eating but not well, yet no matter how sorry for myself I begin to feel all I need to think about is the woman who gave herself to me, withered away to nothing but skin and bones still smiling, still saying thank you, still striving to make someone’s, anyone’s day with kindness and love.

Meningitis

Meningitis is a relatively rare infection that affects the delicate membranes — called meninges (men-in’-jeez) — that cover the brain and spinal cord. Bacterial meningitis can be deadly and contagious among people in close contact.

Viral meningitis tends to be less severe and most people recover completely without specific therapy.

Fungal meningitis is a rare form of meningitis and generally occurs only in people with weakened immune systems.

Yep that’s where we are right now. Meningitis, some bacteria formed upon one of her heart valves, a still bleeding bladder and now to make things more interesting she has begun having bloody stool. Today I believe she needed 5 blood transfusions. Every time this woman gets a leg up, something kicks the good leg out from under her. Two weeks ago we were laughing and counting down the days until outpatient was achieved. We are currently sliding backwards. I am not sure if we are back to square one, but it sure feels close. It has to feel like an impossible mountain to climb for my wife, yet she rarely shows it.

Monday when I arrived after listening to the where too’s and what fore’s spewed forth from the doctors with delicacy as to not upset or misinform I took a seat. Eyes heavy from a lack of sleep, brow furrowed after looking at my wife’s soft, doped up face. My shoulders slumped with the weight of it all and I did what any other rational husband would do at a time like this. I passed out. Yep that’s right! No sooner did I exchange pleasantries with everyone was I crumpled up like a used napkin left wedged into the furniture. Saliva dripping from my mouth, my body off kilter hard to starboard, barley able to stay in the chair. An hour later I awoke to see family members leave as my wife moved in and out of narcotic consciousness. Making my way over to Jacys big green auto reclining chair I rendered a hello and a kiss on her forehead. She asked how I was, I replied tired. She mumbled me too and both of us passed out again. This time for three and half hours. Somedays it’s all too much.

She contracted a fever that day and it started a ball rolling that just pushed her even further away from outpatient care. I was informed this morning she had in fact contracted meningitis as described above. What the hell? Why can’t she get a break? Why can’t her body just let this all happen so we can take her home? How long do you think her sun will continue to shine kept captive in the confines of E wing?

I worry about so much, every day about so many damn things. But of all the things I am worried about, I worry most about her ability to stay positive and keep those rays of hope alive. To shine brightly, not letting all of these repeated setbacks snuff out that light. I am so terribly worried..

I pray God knows what he is doing..