Month: August 2015

Oh? One of those calls….

theycallmebetty14 Comments
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Why must you ring? Why?

One of “those” calls, the phone call we all dread.

We all know the story, have heard it recounted a million times whether through a friend or family, on television or in the movies. This haunting recollection is always recounted like an old wives tale and for some strange reason it chills even more so simply through its timing. Midnight to 5am.

The phone rings, its 4am. Nothing good comes from a phone call at 4am. No one I know lives on the other side of this big round world just waiting to chat my night away, no one I know has been counting down the minutes to converse with me during what would be considered to any other normal human being, bedtime? No one. Not one, single, solitary person.

So that means when the phone rings at 4am it is without a doubt bad news, it always means at 4am that it is bad news. Right? Publishers Clearing house is not calling to inform me I just won 10 million dollars at 4am! Although they could, seriously PCH call anytime, PLEASE!!!!!

It rings, I don’t hear it. Sound asleep, weary from a long emotionally charged week my body is in deep REM sleep. Somewhere in my dream there is an apparition yelling at me to arise, screaming to wake up, something is not right! I wearily crack an eye to a very dark bedroom only to recognize the sound of a voicemail populating my electronic gadget of life.

Heart rate doubles instantly like an electric shock, as though the bell has just gone off at the fire station and I hear the words “Structure Fire”. Bam! I am awake! Searching fumbling for the phone, fear instantly grips me, thoughts, horrible thoughts of what may be; enter my brain! They keep coming as my fingers can’t quite grasp this stupid phone! Nothing is working! Squinting hard, no recognition is working and I can’t find my damn glasses to see since my fear induced jolt knocked them off the nightstand. Like Ralphy from a Christmas story I carefully search the floor praying I don’t take a misstep thus hearing the cracking of a shattering lens.

I have them! I can see, hitting voicemail a somber, I am guessing through dialect Asian gentlemen calmly explains Jacy has been moved to ICU. Her O2 saturation is poor, her breathing is labored, her red cells are down and she is in need of one on one care. If I have any questions to call.

Thank God! She is still ok!

I lay down for a moment to stare at the ceiling.

Once the emotions are out of my system, my heart rate has returned to normal and I’m done being scared, a thought crosses my mind. Why? Why does a late night call always bring the worst instantaneously from our subconscious? I know history, tales of woe and an assumed perception of the worst has everything to do with it. But I just wish there was a way I could shake that thought process from my mind. Anywhoo, this is how my week was to begin, with a single, heightened, middle of the early morning phone call.

After arriving to the hospital, doctors announce she had contracted a form of pneumonia giving her grief which explained why her breathing had been so labored. Her doctors said the GVHD was still responding well to the experimental drug Jakafi and their hopes remained positive as far as continuing to slowly wean her from all steroids which would help with her continued muscle deterioration. She has recently developed diabetes which is being treated accordingly and is also one piece of the picture in regards to her continued loss of vision. On Wednesday she participated in a bronchoscopy which did not make our girl happy at all, having a camera shoved down your throat when you have no strength to fight left her feeling a bit more helpless. By Thursday for some reason she had reverted completely and was back to feeling a failure in her recovery. She needed all our love and care to snap her back into her super woman fighting spirit!

I contracted some form of a cold and have not been able to see her which has been difficult to say the least. It is hard when the woman you love wants you with her more than anything and there is nothing you can do but stay on top of your medications and pray this stupid cold goes away quickly.

She wants to come home, it is all she thinks about! She wants to see her children, to hold them to watch them, to simply sit down and do homework, participate in their lives. On days she feels like quitting all it takes is reminding her what’s waiting for her at home and we can usually snap her out of a funk.

As of today Jacy is doing much better. This incident happened on Tuesday morning and although there have been a few bumps in the road for the most part she has held her own. The tests came back from the bronchoscopy and she has HVV6 a herpes virus we all carry to some extent, it masks itself in a few ways including pneumonia. Good news is she was already being treated with the appropriate medications so a minor adjustment and we shall see in a week. Jacy can no longer walk as her muscles have finally weakened. She still has limited use of her eyes which has been the hardest on her. She works very hard at staying mentally strong which after 67 days can be a bit daunting for a person who is used to doing everything for herself. Thanks to the help of her family she can sit in a chair for about 45 minutes without assistance, she is participating in physical therapy daily which includes the use of bands giving her muscles some resistance. She recently was placed on a special air mattress to help with her bed sores. She is seriously one tough cookie and my hero.

Our family thanks everyone who continues to pray, help, and care. She is the light of our lives, the toughest woman I know and she will come home. It just may be a while..

Hopefully I don’t get another one of “those” calls…

12:11 Sunday: Just in as I place the final touches on this latest edition!! HVV6 responding well, her lungs are clearing up! She is off oxygen and finally saturating in the high 90’s on her own. She has also been moved from liquids restrictions and will be able to consume fluids which means solid foods are not far behind!

Keep those prayers coming, she needs prayers of strength to help her mentally feel like she is improving, keeping her spirits high!

What do I say?

theycallmebetty7 Comments

What do I say?

The woman I love lies in a room far away, alone. She says everything will be ok, she says she will win this fight, she says she has faith, she says…… She says she misses me.

I have often wondered; what is love? The movies would have you believe it’s a look, a moment, an encounter filled with music and rainbows, strangers meeting on a balcony with electricity shooting through their veins as they saunter off into storybook bliss. In reality love comes in all forms, at any moment. I believe love isn’t always apparent, it sneaks up on you when you least expect it or comes from a direction never envisioned. Sometimes love is seen through Gods eyes not yours. You learn this when asked to follow him, trust him like no other, no matter what anyone says, no matter who passes judgement because you know what you feel is love.

Love means seeing things through another’s eyes, not your own. Putting aside personal aspirations or needs to put someone else on a pedestal, even if just for a moment. Sometimes I don’t want to put anything aside or see through another’s eyes and I fight with my own selfishness, but love means knowing without a doubt that anger will never betray your feelings and forgiveness comes easy because you know love.

Love is having a sense of humor no matter the situation. Life is filled with funny moments experienced through both happiness and tragedy. Although there will be some who don’t envision any humor you portray, a moment remains funny none the less and it is love allowing temperance for another’s inability to embrace your vision of humor.

Love comes from holding someone’s hand. Happy, sad, or simply a comforting moment shared between two people for any number of reasons. Old, young, sick or healthy, to hold someone’s hand is a gift given that I think we take for granted. Human contact in it’s most basic form yields love.

Love means blindness. In a society that consumes hate like a Thanksgiving dinner and breeds intolerance for self centered glorification, to love regardless is a powerful statement. We are all born the same, with love in our hearts it is how we are raised that enables societies need. Love, true indomitable love conquers all roadblocks placed in our paths, thus destroying any hate others need to survive.

Jacy was brought to me through God, she taught me to believe in others again. I am sure I have said this before, but she took an broken angry man by the hand, against what all others wanted and showed me how to trust in myself and believe in love. She loves everyone and shows that love every day. She can be angry as a corned mountain lion while in the same breath forgiving as a priest. She challenges me and shows me how to be a better man every day.

I know what love is; it is my wife.

Our house is not the same. The sounds of children give it life, there is a warmth that comes from watching four of your offspring actually working together, laughing, and acting as though they enjoy each other’s company. Even with their mother absent, they are trying hard to keep some semblance of normalcy. They miss her greatly, but know I need their help so they have put aside many of their trivial arguments, moments of discontent and are working hard to keep this machine that is our life running smoothly. But even with all their efforts our house is not the same.

My bed is empty. I am the type of guy who would drive 36 hours straight, just to sleep next to my wife as opposed to alone in a hotel room somewhere. Pillows are stacked high, placed appropriately to simulate her missing silhouette. Where some may take this opportunity to stretch out, explore the generally off-limits other side of the bed I look at it as a sacred place. A place where only she sleeps, her heavy breathing absent, a constant rustle from restless leg syndrome under the covers, the glow from her ipad no longer lighting up the room at 1am, even her scent has begun to fade.

I cannot sleep.. The day keeps me busy enough. I have always believed to be a good husband you should do as much as you can as often as you can to assist your wife. I know it drives her crazy when she vents about something and I immediately try fixing the problem! It is just the way I am hardwired, I am a fixer by nature, it cannot be helped! There is nothing to fix here, I have only my problems, my harried schedule, my heartburn and stress and there is nothing I can do about it. So I just lay here looking at the ceiling; wondering if she is sad and feeling alone. I can’t sleep.

My heart aches for this time lost. I don’t understand why we are doing this? What on earth led us to this point? I just want her to be here at home! To be with us all the time! Her laughter, her smile, her goofy ass ways! I long for the moments when her goofiness drove me crazy!!! She is missing out on her children, her animals, her marriage and I want desperately to find someone to blame!! But who or what do I blame? There is no one, nothing, it is what it fucking is and that is bullshit! There is no getting back this time lost from her life, like a patient awakening from a coma to wonder what is, what was; my heart aches.

What do I say to people who ask how she is? The truth is too painful and to lie, well a lie is just a dishonorable thing to promote. I don’t mind keeping everyone abreast of Jacy’s condition, it does help others to better understand the severity of her situation along with the suffering of others traveling down this very same path. But what do I say to those whose hopes read far too much into my accounts. We all have hopes, but it’s hard to keep pacifying those with no intentions on hearing the truth. Do I keep telling it like it is or do I falsify my facts for a softer, gentler outcome during conversation? Some days it can become so intense a small bead of sweat rolls down my back and while looking for a legitimate out my eyes scan the room for the woman who would always save me in situations like this, but wait that woman is who we are talking about. She is not coming, she lays undisturbed in a hospital room 100 miles away. So what do I say..

Her kiss. When I married my wife it was her kiss which solidified our union. Your wife may have a nice kiss, but my wife, well… Today there is no kiss, tonight none as well, I long for her kiss, as it settles me when I am angry or tense. The only kiss I get now is through a mask, it is not the same and is always followed with how much she needs me. I need her too, yet it’s my heart that needs one of her kisses.

Some days I feel like I am failing.. Trying to be everything to everybody takes a toll. I have plenty of help and a routine that is working well. A community graciously at my beck and call, I am blessed. The kids are fine, the animals are doing well and the ranch is running fairly smooth, but I can’t help but feel like I am failing. My heart wants to be next to her every minute of every day. She is small and frail, no longer the strong woman who could run 24 miles then teach two spin classes in a day. She can no longer see and can barely walk to the bathroom which has left her with a fall protection device upon her bed. She longs for the ability to just stand up without running out of air, then needing to sit down just as fast as she stood. I am not there to help her, to make her walk, my schedule leaves me going every three days and it is not enough! I am her husband, her best friend, I promised to care for her in sickness and in health and yet I am not there! She should not have to cry alone, or act surprised when she sees me because it’s been to long between visits! My world is running so fast while her life is locked down, frozen, like the hour hand of a clock running in slow motion! I know this is what she wants, she tells me every few days is fine, she needs a happy routine for her children. There is no reason both of us should be absent and she is right! Sometimes I hate when she is right for I only want to be selfish and only think of her! Yet to see her sad and missing me, well, some days I feel like a failure.

So what do I say?……

Can someone please tell me what I am supposed to say? Can you? Place yourself in these shoes, stand tall because it is how you were raised to handle adversity, look into your children’s eyes daily, and hope you don’t give away too much while praying for an answer to come soon. I have become weary of sadness, tired of worry, tired of being scared, tired of being without my wife, my best friend and partner in crime. I have grown tired of being me. Wondering constantly while holding her as she worries about her life, her children, her home, her friends, the ones she loves, as she worries about my wellbeing  if she can remain strong enough. I know she can’t see me but I hold her and look into her eyes anyways because I know she can envision the look of love coming from my face ..

What do I say?………

The answer? There is nothing to say. I will keep moving forward, making life appear seamless for my family even though it is far from so. She needs to know all is well, that I am well, and her sole purpose in life is to heal then come home. She needs to know the fight is not me, the fight remains against her disease. My job as her husband, as the man who loves her more than she will ever know is to continue on, support her anyway I can while quietly, carefully caring for the life we have built together, forever.

What do I say?

I say, I love you….

I wrote this a few days ago. I have held onto to it, not wanting to post it, fueling a panic button that I may just be losing it a bit. In reality after reading it over and over again, it is the way I feel. It is the way I believe many would feel about their significant other in the same situation. Why? Because I do believe in love.

This morning  (August 19) Jacy can finally see a little better. The latest from the doctor in regards to the experimental drug is her body has accepted it and she is currently (his words) on a slight “uptick” from the median line of survival we are all hanging onto. This is great news! Although things can change for any reason at any time, the fighter that is my wife is coming through! This weekend they wean her off more of the steroids and up her drug a tad bit more.

So I kept it another couple of days. As of August 22, she had a little slide. The pain pump is back in place, she has severe edema so she is receiving Lasix again hoping to shed the fluid. A catheter has also been re-installed as her bladder refuses to quit bleeding. The plan remained the same as steroids continue to be weaned and the experimental program continues.

So please keep her in your prayers. I am fine, that is why I write. Writing allows me a freedom and ability to say what I feel, share it with others who may feel the same way, helping to cleanse my soul and recharge my emotions to handle the next moment, day or week.

Thank you for that….   Betty.

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The 80’s and fighting Leukemia? Huh?

theycallmebetty3 Comments

Lately I have been on a bit of an 80’s music kick. You remember the eighties don’t you?

Mount St. Helens, Billy Idol, Princess Diana, Ronald Reagan, YUP’ies, the Challenger explosion, the Falkland war and we cannot forget Bill Gates becoming the richest man in the world in 1983.

Now I mentioned Billy Idol only for music, I loved his fighting angry style and sneering grin which always makes me think of him first! But let’s be real shall we? In reality it was a decade filled with some of the most adventurous artists ever in my humble opinion. Angry, screaming, fighting against the machine music! (anyone remember the sex pistols?) In that vein there was punk rock, hard rock, and heavy metal! There was also new wave, pop, and let’s face it country music was still COUNTRY! Not this rap, pop, cross over crap they are passing off today. Just a reminder of a phrase recently coined by yours truly. Country + Rap= CRAP!

“Country + Rap= CRAP is a trademarked statement and not to be used without the express permission of They Call Me Betty inc. along with any and all subsidiaries associated with They Call Me Betty inc..”

While traveling down memory lane with some of my favorite 80’s artists a revelation; the 80’s may in fact be the new 50’s! I mean even today the 50’s are alive and strong musically, there are oldies parties and people still love hotrods from that era! This of course set me to wondering why no one really celebrates the 60’s or 70’ the way the 50’s and 80’s are celebrated on a regular basis.

The 60’s were cool, free love, hippies, rock and roll expanding from suits and ties in the beginning to long hair and freaky clothes as the decade came to an end! Then the 70’s arrived and we had Vietnam, rock music was trippy with long hair, lots of dope and a strange sound, other music forms revolved around love, lots and lots of love. Near the end though the 70’s got weird which I blame on a desperate struggling economy. This may be why we got happy Disco music (along with copious amounts of cocaine) blaring in our ears forcing us to dance the night away in a sweaty barrage of bodies, polyester and open front shirts!

So why don’t those era’s receive the same loving reflection? Maybe they do and because I lived the eighties decade I only notice its relevance in society today? Either way.

As I was saying, I have been listening to eighties music a lot lately. Needing to find my happy place as all of this craziness swirls around me. Sometimes when I am watching Jacy sleep and it is so quiet inside her room the only noises to be heard are that of tiny IV pumps turning and a favorite Van Morrison tune cranked loudly inside my brain. It is like watching a sad music video behind my eyes where you flashback and pretend two of you are walking on a secluded beach, or laughing as rain pours over the both of you only to fast forward through the twisting of a scarf in the wind. There you are sitting alone on the very same beach staring off into the distance as the screen fades to black. (Totally sounds like and 80’s video huh?)

Spending time next to my wife is my favorite activity as of late; she cannot see me most of the time, but even when she sleeps she knows I am there. She is slowly showing signs of improvement as her sight returns, then fades away only to return in one eye the very next day. Her face has cleared up with baby fresh skin left behind from the drastic peeling and sloughing the week before. Her body remains covered in rashes and blisters which is hard to see as you know it hurts all over. Her once fit stealthy frame has been reduced to skin and bones. Her body is eating itself alive right now, our hopes remain for a complete turnaround soon. I hug her when she stands and nothing is there, I close my eyes and kiss her which feels the same, warm, familiar, wonderful. I can only kiss her through a mask but it doesn’t matter for love knows no barriers.

I ran into her doc in the hallway yesterday, she was having a particularly hard day as a multitude of drugs had run her down leaving her barely able to stay awake. Doc says status quo, which in this case is a very good thing. We won’t have true numbers on what this experimental drug is doing or not doing until late next week. Good news is she is holding her own and they began slowly weaning her off steroids which will allow this drug to work a little harder. Her breathing sounds a little better (not as much wheezing and phlegm) and her voice a bit clearer. Over all Jacy has been fighting the good fight and that is all any of us can ask for from this tough Cuban chick. righttttt????

Today’s writing was a bit of a ramble, but I suppose if I am going to write about this journey, it can’t all be a structured garden filled with sunshine and roses. My brain is fried, I am scared for my friend, but we stay strong through faith. As she reminds me on a regular basis; this sucks, I feel like shit, I couldn’t do this without you, but I have faith and I love you. I will beat this, we will be together again with our children at home.

Who could ask for more?

Think I’ll put on the earphones and crank up a little Idol?

idol

And away they go!

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I have spent the better part of the evening reading each and every emotionally charged snippet about children heading off to college. I went back and re-read what I wrote about Cody leaving last year on my blog and found myself choked up all over again.
To every one of you feeling the pain of having to say goodbye tomorrow or the next day or next week understand this; yes it hurts, it is going to hurt, there is no way around the pain of watching your child walk out the door alone. Yes it is a good thing, you have done your job it is time for them to shine! No you don’t have to be happy about it, no matter what anyone says to you, this is your child, your emotions, let those emotions flow freely, you have earned it!  Yes you are going to miss them terribly along with their dirty laundry, snarky comments, goof ball friends and most importantly you are going to miss just sitting with them sometimes not saying anything at all. It is hard not knowing what they are doing or how they are feeling along with  constantly wondering if they are safe,  after all that has been part of your existence for the last 18 years! But in the back of your mind you know you have done your job, so trust me it will be ok. These children or now young adults no matter how we may perceive them are the very best part of us heading out to make their marks upon this world and that is a good thing. They will come home and they will leave again, but know this, each time they come home they will be a little different, a little wiser, a little more educated, and a little more like the adult you always hoped and dreamed they would become. So while you are grabbing for tissue to sop up the misery, take your free hand and pat yourself on the back for the best my friends is yet to come! I promise!

Buckle up Buttercup!

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buttercup3

Timidly pullIng down the strap, buckling in tight, yes my nerves are raw, emotions high but with a feeling of optimism coursing through my veins. I knew this was going to be a hell of a ride, after all I had done my homework, read the memo’s and calculated all risks associated with this procedure. Life is filled with the unexplained, the where’s and whys, but life can also be explained through formulas, numbers, and equations the basis of fact.

In my world I live on a combination of hard facts and grey areas derived through trial and error, or accumulated experiences. Some days bring solid steadfast results, other days bring gloom and despair but mostly we consistently work within that grey area of operations, teetering between facts and gut reactions. There is something to be said about going with your gut! While floating in the cranial membrane of greyish indecision it has always worked well for me.

So today whilst arriving at Stanford to meet with Jacy’s primary doctor, I really had no questions as through many days and nights absorbing information, regurgitating said information for consumption and pondering the wealth of answers in regards to my wife’s previous, current and future care I felt fairly certain I was right where I wanted to be mentally. Oh but how doctors love hard facts….

Buckle up buttercup this is going to be one hell of a ride!

That’s all that kept running through my head..

Sitting in a room specially designed for such occasions I actually began to feel a bit nervous. I have been here before and I never really like these meetings. It is probably the basis for my need to overload on information, know everything that is happening so as to never be caught off guard. The room was filled with Jacy’s dad, step-mom and myself seated across a table from the doc, his assistant and a social worker. Jacy’s primary nurse joined us a few moment later quietly standing over my right shoulder. For the next 20-25 minutes this room reverberated with every question a father could think of in regards to his daughters care. In return every explanation the doctor felt needed to be tossed onto the table and a few that were beyond what I expected were pitched as well. Once the percentages began flying around my nerves just went numb! 20% here, 70% there, combined with scary words like mortality, fragile state, and the ever popular response of “we just don’t know”. There were also positive words such as, fighter, strong, stubborn and holding her own. Many detailed analysis I already understood; some analysis I was vaguely aware of and had appropriately deduced an outcome, while every now and again something would be said that just blindsided me. But I suppose that was to be expected for no matter how much you prepare you cannot possibly know everything. As we concluded it felt as though we all walked away understanding a little more about the who, what, where and the why of it all. I also walked away with the utmost respect for her doctor and every ounce of care she was receiving.

Now I have long said that statistics are to a mathematician what a lamp-post is to a drunk; just something to lean on.

But driving home after weeks of feeling super positive (well except for our girls little outburst last Friday that sent me into a tailspin) and feeling as though my understanding of everything was solid; driving home I felt, well, I felt heartbroken. A feeling I had no inclination of participating in, yet there it was, like my chest was going to break open! Just plain old heart-broken. Part of me wishes I had never gone to that meeting, part of me wishes I didn’t understand all that I do, part of me wishes I was just a stupid, sheep of a husband, one who nods his head yes and no whenever questions are asked. All of me wishes I could tap in for my wife, trade places with her, send her home. I have known this was going to be a long rough road, I have known that from the start. It just got longer and rougher. I have always known my wife was a fighter, she is the toughest woman I know, but she is going to have to get tougher. We are no longer talking in weeks, we are talking in months. She misses her home, her life, her ranch, her children, heck even her husband! I miss her terribly at home and all of this is breaking my heart.

The good news is these doctors know she is a fighter, everyone loves her, and the nurses all look forward to working with her. Jacy’s spirits are soaring and she knows deep inside her soul she is going to win! GVHD is no joke it is life threatening, but her toughness, her tenacity to continually do the opposite of what is expected through statistics, that will power is what keeps her going strong.

To date; Jacy cannot see due to deteriorating optical nerves in conjunction with sloughing of inner eyelid tissue, so today they tried several experimental procedures hoping to alleviate some of her visual discomfort including placing an amniotic sac over the open eyeball. Do you think that stopped her from getting out of bed and walking with me this evening? Hell no! Her eyes burn, her skin burns, she has broken blisters and peeling over her entire body! You think she whimpered once about how uncomfortable it was or used it as an excuse to get out of physical therapy? Hell no! Her stomach is upset, she cannot eat solid food because the GVHD has extended to her intestines leaving her only induced nutrition arriving through an IV. Do you think that has kept her from downing chicken soup whenever possible? Hell no! Jacy’s all over body pain is so intense she is attached to a pump delivering morphine every 15 minutes just to get through the day. Do you think that stopped her from greeting every nurse, janitor, doctor or visitor with a beaming smile, telling them what a good job they are doing, or talking about television shows, laughing together like old friends? Hell no! She can barely talk at times due to severe dry mouth and lesions inside her throat. Do think that has stopped her from happily conversing with each and every person who crosses her path? Ok I know you know the answer to this by now!

Her enduring strength, positive attitude and indelible spirit are what’s keeping this mother of four, teacher, daughter and friend going strong. I also believe some faith is in there as well. Please keep her in your heart, she believes in all of you and says she can feel the power of prayer working every day.

We have a hill to climb, it is going to be long, sometimes really hard, bumpy and frustrating, but when you feel those helping hands of spirit and faith pushing you from behind you can’t help but make that final push over the top. Then buckled up, straps down tight we can finally let go of the bar, place our hand up high and enjoy the ride together.

stay positiive

How was your day?

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frustrated

0750 my gear has been placed on the engine, I am Acting Captain today and we have a shift filled with misfits as many are out on the fire line. The day feels good, my spirits are high, and we have a great group of guys working this morning! 

This day is also an important one for many as we are selectively heading to city hall. Many have tested for an open Captains position and one by one we will head over to partake in the interview process. The interview process is the most important in this three stage testing procedure as its weight bears 50% of your overall score. I feel pretty good considering the weight upon my shoulders as of late. I enjoy the interview process more than the testing side because it gives each individual an opportunity to express themselves beyond a cut and dried, yes or no, pick A,B,or C type answer. It really does put everyone on an even playing field and with the wealth of incredible talent our small department holds it makes for an exciting 30 minutes in front of three of your peers.

0830 I am in the shower, Class A suit laid upon my bed, shoes shined, a quick shave and we will be on our way. My engine is staffed with two other awesome candidates so we are traveling together. Our second due is fully staffed and prepared to handle all calls as we work our way through the process. Of course this is a necessity for as I previously eluded 1/3 our department is currently out of county working the Rocky fire. 

The phone rings, I am mid shave, they will call back. It rings again and keeps ringing; SHIT! This must be important, there’s something wrong with the kids is what comes to mind first! I am sure someone is fighting about having to take orders from one sibling or another, or someone doesn’t want to do chores! Wet and unable to see very well without my glasses, the outline of my wife’s picture is visible through the steam as it continues to ring! My heart races….. She never repeat calls me unless it is REALLY important. I answer the phone and tentatively say: hello?

A sound of desperation rolls into my ears through gasping breaths, sobbing and fear. “I don’t want to die, they are putting me on experimental drugs, I don’t want to die here! I want to come home now, can I please, please come home now, I cannot die here James; I can’t!!! I feel too good, I am walking, we go outside, why am I getting sicker? I don’t feel sicker? You can’t let me die here! I just really want to come home now! Please, can I please come home!!!!!

(Heavy, heavy sobbing)

I don’t know what to say. That is right, the man who has something to say about anything and everything to a point you just want to tell me to shut my damn mouth! Has nothing to say.

Tears fill my eyes.

After a few still moments my brain kicks into gear. I tell her I don’t know why this is happening, that she will win this battle, and that she is the strongest woman I know. (Hell truth be told she is also stronger than most men I know.)

She retorts with; I just don’t understand James, this isn’t fair!

And she is right. It is not fair, and I will never understand why this could happen to anyone, let alone a woman who has given so much too so many. I know our lives are not tallied up in a score allowing us some form of greater peace upon leaving this earth. But as one who believes in Karma, as one who believes we are all put on this earth for a reason, it makes absolutely no sense. No sense at all..

A few moments go by and she tells me she just needed to hear my voice, she needed to hear me tell her everything would be ok. She asks how my interview went to which I somberly reply; it is in a half an hour.

In hindsight, I should have lied and just told her it went fine.

It took a few minutes of calming her down after spiraling into what a bad wife she thought she was for calling and laying all that on me before an interview. I calmly told her not to worry, it would be alright and I would be there soon. She made me promise to go through with the interview. I was ready to leave. It was the hardest thing to promise her I would stay, but she made it very clear this interview was not just about me, but about our whole family. Twenty years happily given to my career, if an advancement were to come it’s not just my advancement, it is the entire families advancement as they too have sacrificed for all that time. Once she was calm and re-energized knowing my love and commitment to her, we hung up our phones.

Walking back towards my dorm was the longest mile. Everyone seated in the day room, some talking about the upcoming interviews others mentioning fires while some were partaking in a little busting of chops. I made no eye contact, prayed no one could see my swollen, red face and quietly I slipped into my room closing the door without so much as a squeak.

Sitting on my bed, I slowly raised up my wet towel, covered my face and screamed as loud as I could. Then I cried, and cried some more until it became sobbing.

Now I am no psychology genius, although you need to have a little ability in that arena when it comes to this job and dealing with the various personalities we encounter. But I am going to guess that sob was more than just a phone call. Fighting migraines daily brought on by all this stress over the last year and a half finally came to a head and in that moment. Undignified, snot filled, blubbering moment. Trying my hardest to get it under control before I was discovered was to no avail.

One of many wonderful, caring co-workers that surround me on a daily basis walked in, not because he heard something, but because we share a dorm room and the minute he saw me, he quietly closed the door, came over and without a word sat by my side, put his arm around me and just hugged me. It brings tears to my eyes writing this because in a moment when some would try to do so much more, he knew more was not what I needed. What I needed was hug. A simple human response, showing you care enough about someone to let them go through what they are going through but with the silent strength of support in the form of a simple hug.

I pulled myself together, got dressed and went to my interview. Before walking inside I took a deep breath and tried my very hardest under the circumstances. It was all a blur as before I knew it, the boys had covered my spot on the engine and off to Stanford I went.

Jacy was never happier than the moment I walked through her hospital room door! She couldn’t see me, but once I said; Hi honey, she smiled that beautiful smile and there I stayed, by her side until late in the evening.

To understand without question the lord has a plan for you may be a hard pill to swallow at times. You are not supposed know why things are the way they are, but determine what the message is and how you can learn, grow and provide to others from what you have experienced. Good, bad or otherwise it is a journey designed for you and you alone.

I am not happy about this road we are currently on, I never will be, but I do know when this is over we will have one of hell of a story to share with others and maybe that is the point.

Jacys current status: Jacy currently has GVHD in her abdomen which is exactly where you don’t want it to take hold. What that means is as her new cells are battling to find a foot hold in her body they have a tendency to destroy things, such as tissue, muscle, linings etc.. This is why the first sign of GVHD is a rash. Jacy’s rash covers her entire body. It eventually blisters with dead skin cells, sloughs away leaving new baby like skin behind. (Stars pay thousands for a treatment to give them new baby skin) What you hope for is this is as far as it goes and that you develop chronic GVHD, where a rash or a form of shingles only re-appears every now and again. Jacy has developed acute GVHD, which is life threatening; although treatable it is fully dependent upon her body’s ability to interact with a variety of drugs to counteract the GVHD. None have worked and she has reached the limits for steriods. She weighs around 129 pounds, her legs are the size of my biceps, she can barely see as the underside of her eyelids are sloughing away leaving her eyes swollen and blurred. She still has a full body rash and of course her abdomen is now affecting leaving her with uncontrollable diarrhea. The fear with it in her abdomen is the cells are attacking her intestines which doesn’t allow for her to process food. What this mean is no matter how much she is craving a cheeseburger she must be on a liquid diet because her body cannot digest the solid food appropriately. Even on a liquid diet her body is using way more calories than it is able to obtain, leading to anorexia and possible kidney failure.

We are in a last ditch effort to turn things around by placing her on experimental drugs hoping to reverse these effects before it is too late. The experimental drug they are prescribing is Ruxolitinb or Jakafi. Look it up it is an interesting read.

This morning she feels great! The diarrhea has stalled as she didn’t need to go all night. That is a good sign! She is fighting with every fiber of her body as only she knows how and told me two weeks! Two weeks is her goal to get to her dads hell or high water! She believes the new drug will work, putting an end to all this nonsense! There is definitely something to be said about a continued positive attitude.

Many will say I am giving away too much information, that there should be more privacy when it comes to this matter. But the reason I share all of this is not just so our friends, family and extended family (which is what I consider every single person who is praying along with us to be) can be informed, but to put a realistic face on Leukemia. Not just the success stories and depressing losses but what is actually happening in between to everyone involved! It is a dreadful disease that hurts family after family and without knowledge along with sharing our experiences we will never grow to help others living through the very same hell.

To everyone who is assisting our family in some form or another. Thank you from the bottom of my heart.

To everyone who is praying for our family; may God bless you all!

Feel the warmth

theycallmebetty4 Comments

sun

Today the sun shone upon her face as I witnessed how its warmth made her feel. We take for granted our daily lives and how simple everyday processes are there, waiting for us, unobtrusive. Like knowing your right leg will follow your left, or when you itch, a dominant hand will scratch without so much as a second thought. So goes our lives, the sun will rise, the sun will set, followed by the moon. Yet we never think about what if we no longer knew the sun was there?

Every day for millions that fire in the sky is too damn hot! Every day for millions it shines over and through clouds leaving them to damn cold. We take it all for granted. One thing I have noticed since this journey began is how much I miss living near the coast. The valley is a wonderful place, but driving back and forth to Palo-Alto I can see the majesty that is fog rolling in over the foothills, that cool breeze proceed its arrival letting you know the fog is almost there, never having to hear the steady drone of an air conditioning unit running for 24 hours on occasion. I grew up in a charming little town, filled with dairy’s and cattle ranches several miles inland from a tip of the bay. Sonoma was an awesome place to grow up. Every night you could watch the fog roll in over the valley walls, rolling out in the morning to leave a cool, crisp moistness for all to enjoy. As humans we complained it was too cold, or too hot during the day and man just once I wish that fog would wait until later to roll in making everything wet!

I have been away too long, I am not sure if it’s my age, the fact I recognize we complain way to much or seeing life through my wife’s eyes as of late has changed my perspective? But I appreciate everything this earth has to offer us as human beings.

So I rambled, where was I? Oh yes, What if?

Watching my wife slowly step ever so carefully down a long and busy hallway, eyes fixated on a double set of doors roughly 50 yards away. The light shining through those doors indicating they are in fact a righteous pathway towards freedom. My focus is solely on making it there without her feeling so tired she can longer fathom making an extra step, thusly cutting our journey short. Ensuring her pathway is clear as we traverse this major artery of the complex. My worries are there, but I am trying my best to not let them show. She has only completed a few loops around the quad over the last week or so; her small world of circular entrapment. Today’s journey for her has become the equivalent of walking into the next town.

Double gowned, IV stand in tow running on battery power, a hat to protect her new skin from the dreaded UV rays and of course sporting the ever so stylish Darth Vader mask, keeping any air she breaths clean of all harmful organisms. We crawl, people staring, some smiling, others with a “good job” look upon their faces and of course the trip wouldn’t be complete without those who just don’t know what to do when they see her walking towards them. To look away, make eye contact and freeze, stare mortified or the just plain look of pity. Oh well it really isn’t their fault so what can you do?

We make it to the door and as I open it, the sweetest, most perfectly timed light, warm breeze hits our faces. For me it feels great! But for her, well this is where I was going with all this rambling from the beginning, it is heaven. This woman who hasn’t felt a breeze, natural warm air, cold air, fog, or glaring heat for 44 days is slightly blinded by the brightness and in one deep breath, relaxed and happy.

I witnessed how the warmth made her feel! We didn’t make it to Stanford’s glorious, well-manicured fountain area another 25 yards away, but we did find a nice bench, under a tree and there we sat, beneath a beautiful mixture of sun, clouds with a hint of fog just off the horizon. We listened to the fountain, and all the wonderful ambient background noise. Light and movement were a neural overload for my wife but she enjoyed every minute! We talked as if we were on a date; that is if the date was near a hospital and my date was heavily sedated. (No rufie jokes please) She sat with her eyes closed for a bit, feeling the suns warmth, the light breeze, free from the beeping machines in her room, while quietly wondering when she was going home.fountain

We had a wheel chair available for the trip back, but she refused, her stubborn Cuban side firing back up! So after twenty minutes or so, Jacy said it was time and we slowly, carefully made our way back down that long busy hallway, into the BMT unit and back to her little room with a window.

Once inside the BMT unit it was heartwarming as almost every nurse cheered her onward, congratulating her for making the journey, inspiring her to be stronger, to become healthier in her recovery. I cannot say enough about these special people who work inside this wing of the hospital. We all know and I have said it before; my wife could make friends with the hardest of people. Yet everywhere we went, even in the hallway outside the BMT wing, nurses or Stanford employees were coming by to wish her well. They all know my wife by name, they all have a smile on their face and they show just how much they care. It is inspirational.

Tomorrow is a new day, no matter what has happened today, good, bad, or in-between remember this, there is always someone out there doing a little worse than you. Be their inspiration.

The sun still shines on your face, you still have the freedom to be where you want to be and when you want to be there, you have the ability to make the very most out of your day, every day.

So please take a moment and be thankful you can still feel the warmth.

hobbes