Tag: attitude

What do you see?

theycallmebetty3 Comments

What do you see when you look at me?

It’s ok, go ahead, I’m sure I have heard it all either to my face or behind my back.

What do you see???

A 54 year old man that some would argue is well past his prime? Kind when he wants to be or grumpy, selfish and maybe a bit of an asshole?

What do you see when you look into my eyes?

Green coloring, dullness and exhaustion. Anger, exasperation, or disdain?

Blank, kind or idiocy?

How do you judge me as I walk your way?

Cocky, still strong, or broken and gimpy?

Or do I seem just stiff and slow?

Who are you?

Are you a perfect human being?

Who are you to judge me at all?

Who are you to say anything about my life, how it’s lived or how I may appear.

Are you that much better at life than I?

Have you taken a moment to see life through my eyes? To understand before touting your opinion for all to hear?

Have you walked a mile in my shoes?

I am a 54 year old man this is true.

54 long hard years that I will never let define me but years none the less that definitely explain a little about who I am.

You may say I am old, you may see me as past my prime yet I say nay. With age comes wisdom, life lessons and most importantly; perspective.

Looking into my tired crows feet encased eyes.

The green in my eyes used to shine quite brightly. Fed by the devil inside and a need for constant mischief they are now mellowed, tempered, colder, and see things, habits, and people much, much clearer. They still gleam now and again with the sparkle of a child or with the heat of desire, but do not take their stony gaze for granted as they are still sharp and alive.

When I walk toward you I will always greet you with open arms and a smile. I will take you in as one of my own and if you are willing to listen regale you with wisdom from years gone by. It’s just my way.

I may look stiff and slow, and in some ways I truly am. Injuries from years past haven taken its toll on my slowly aging body. A life or death surgery, replacing my aorta with a synthetic tube. The loss of a gallbladder along with a few broken bones, torn muscles, shattered shoulders, knees, burns and scars. Calculating movements brought about by years of being trampled and shit on both physically and emotionally.

I carry with me the weight of so many deaths, families broken, spouses, children, teenagers, mothers, fathers, brothers/sisters, grandparents and friends. Lives snuffed from this earth, witnessed during my long and eventful career in the fire service.

Two wives, women I loved who were my life. Their lives taken way to soon, leaving behind hurting children and families, nothing modern medicine could do to save them. A void left behind that sits like a black mark on my brain. Yet each day I put both feet on the floor and take that all important step forward, trying hard to never be weighed down by life, experiences and the injustices it may bring.

How could you know?

How could you know as you judge me that I believe life is always best lived. That I know better than most our days are numbered and we should live, love and laugh every second of every moment of every day.

How could you know from your platform of judgment, I believe we do this gift of life a serious injustice by neglecting to do just that.

How could you know that after all I have been through and seen, I still carry enough love in my heart for more. Much, much more.

More love for my children, more love for my true friends, more love for new friends, more love and adoration for someone very special in my life, who I choose to love wholeheartedly. A woman who deserves every single bit of the love I have to share.

These people I love are my kingdom and I would fight to the death to protect each and every one of them.

How could you know that I am always looking to share.

Share my knowledge, share my charity, share my emotions, share my passions, share my fears, share my laughter, share a hug.

What do you see when you look at me?

Look hard.

It’s ok.

For someday I will be gone.

I won’t be sad.

I will die like so many before me.

It is the nature of the game.

But I will do so on my terms, with a smile on my face, and those I have loved so, will know they were loved in return.

I will no longer be here to care what you see.

And no matter what you see or your opinion, I will have been filled with more life and love than any one man rightly deserves.

That my friends is a life well lived.

So what do you see?

Better yet, what do you see in yourself?

It’s important for you to know.

Pushing back from the table for I might be full.

theycallmebetty2 Comments

Our daily lives at times seem to flow like an oceans tide. Highs then lows, troubled waters an incoming squall or the serenity of a calm sea. I feel as though we are such a part of this earth, so intertwined and yet it’s not what many would have us believe. All things remain cyclical yet no observation as to the cause or need? Blinders have been affixed and our noses lay heavy towards the ground out of fear or repetitive motion. This mundane normalcy deemed appropriate as we refuse to raise our eyebrows casting glares into alternate directions for no other reason than to ask why? A society spoon fed by the very corporate dollar so many rage against. There is no trustworthy source any longer, no sense of community bringing bright ideas and alternative messages to an open forum where mockery and ridicule are not to be tolerated. We are a society of mongers. It is no wonder so many hearts are filled with anger and hate. It is why those who are not filled with anger and hate only feel fear, sadness, bewilderment and confusion. Our modern day is frustrating to say the least. Just an observation.

Trying my hardest to find positives around me, my head hurts. My head is feeling as though it is filled with sand and ready to burst at the seams. When I feel this way, knowing myself as I do while understanding my body, I know I am emotionally full. Neck pain, back pain, the inability to tackle large projects or even affect them in some small way. These are signs I may be a bit troubled.

My blog is suffering. There has been many stories as of late, yet I have been making excuses not to write. It’s as though I am procrastinating for some unforeseen life test that I have not studied for and time is desperately running out. You remember school don’t you? Mid-terms, tons of material to study for and you begin to feel as though you just can’t? So you put it off one day, then another and soon one day becomes two, two becomes four and four becomes a week, a week becomes two then bam, you staring down the barrel of having done nothing and you have 48 hours to get all that work/studying finished!

The book is kicking my ass! No kidding, it is seriously killing me!! Every writer feels as though there is this romanticism associated with the act of writing. (cue dreamy music) Holed up in some small cute cabin in the woods alone with nothing but a Hermes 3000 and a couple reams of paper to keep you company. There is a light rain and endless wildlife roams at will around your cabin. Scotch, scotch, scotchety, scotch! There is plenty of scotch, a few steaks for grilling; a warm fire leaves nothing but your imagination draining through clunky metal keys as you pour your souls into the world’s next greatest novel! A book written from the heart, full of love for all to read and draw conclusions while filling your desire to reach just one person! Then if you are really lucky you end up on the talk show circuit telling all who will listen just what an amazing experience it was to find yourself, in that little cabin while sharing your pain and exploring your mental boundaries! Oh yeah, also while consuming copious amounts of scotch!

In reality, you write when you can. At work, the desk at home, at three in the morning when you can’t sleep, or you just tell your laptop to GFI with a super number one symbol shown using solely the middle finger as you walk by.

Right now I have over two years of writings, some from the blog, others never published. There is back stories needing to be filled and fillers needed where some writings have failed to draw a conclusion. Then while writing new material or correcting older stuff you realize you haven’t even begun to touch the depth of pain pulsing deep inside. Oh you think you have done a fine job of explaining where you are on the pain scale but in reality it’s more like a large, gross scab. Each and every time you begin to write about a certain painful moment you are really just picking at it! The scab that is. The problem becomes the more you pick at this scab, the more you wish to keep picking at this scab no matter that it hurts! Then you find you long to pick at the damn scab, almost crave picking at this fucking scab and before you know it the scab has started to bleed and each drop of blood is another level of pain for you to experience! Once you have bled enough you find the need to analyze the blood, categorize the emotions and before you know it, you are writing about it and another scab is there for the picking!!! Oh bloody Hell!!!!

Reading through my journal, correcting grammar while restructuring sentences has forced me to relive every emotionally charged experience over and over again. Some evenings I can only make it through one or two before I find myself feeling blue. Feeling the pain as though it is happening right then, right now. My heart aches for my wife and all she has endured and continues to endure. It is not fair and many times I wish it was me and not her. But it is not, so the best I can do is honor her by writing this story the right way and pray that when it’s finished a story is told that adequately reflects the message I am trying to convey. During many of my postings a follower asked if I thought I would survive reliving the experience while writing this book. I can say with all honesty that I will. It will be painful, it will most likely change me as a person forever, and if I do it right I pray it will change the lives of others, but it will leave a mark, a toll and once the scab is healed, leave a scar.

Work.

My whole career I have been really good at doing my job and much like taking my uniform off to go home; putting it away when I am done. There has been some rough calls as of late. Vehicle accidents, a few fires and a few fatalities. The beauty of our job is the thousands of hours of hands on training and preparing all pays off, then we are able to quietly slip away into the background. Notoriety is not what a true public servant wishes for in my eyes. This job we do is so much more than a job, it is who we become and it fulfills a need we harbor to help other human beings without fanfare. So for the better part of 22 years that’s what I have quietly done. But the last loss of life call I participated in was much more. It was a young life, it was a good call (as far as work goes)! Everything went right! From on scene time, to assistance, to hand off, the patient was treated and cared for exceptionally! Hell upon arrival at the hospital there were signs we had in fact succeeded! It all sounds great right? Do your job well then go home? You quietly pat yourself and your co-workers on the back for as a team we either do well or fail and this one was in the win column. Right? Ah no wrong! Sadly the patient ultimately perished.

Where things have become harder is in today’s age you can no longer erase the calls, and move on keeping some form of sanity. Why? Because we have Facebook, Twitter, and YouTube. It’s not that we don’t want to know the outcome or for that matter want you to know what we did or how we did it, for we do, but instead of a verbal update from your medical director or battalion chief complete with an after action assessment we now get all of that plus the social media report! Our world is becoming so small and because it’s shrinking rapidly we see patients or victims plastered across any number of social media sites and with it comes the arm chair quarterbacking that so often follows a senseless tragedy. Those thoughtless comments, or ignorant compilations of medical strategies or tactics that should have been used, or weren’t used at all! These of course are usually coming from people with little to no knowledge of emergency services or the stressful split second decision making that often times accompanies a fast paced life or death situation. No, other than watching an episode of Blue Bloods, Greys Anatomy or Chicago Fire the majority of these people spout off from the relative safety of their computer screens with little or no thought other than self-absorption as to what their statements say to all of those involved! The consistent proverbial stirring of the pot, pointing of the finger, trying to find someone else to blame at all costs is taxing!! It shouldn’t bother me, it really shouldn’t, I mean I am grown man who loves his job and can empathize with overwhelming grief and sorrow. Usually a few of the main precursors to spouting ignorance before cooler heads prevail! But once the faces become a repetitive fixture, shown over and over again, complete with background stories, testaments from loved ones and of course the aforementioned written rage well it becomes hard to not take it all personally. To transpose that person as one of your own loved ones and then carry the guilt.

We do our best, we try very hard for the citizens we serve and we carry the faces of each and every one we have ever lost while trying to do this job. Sometimes it just sucks and there is nothing you can do about it. It is the job.

So you can see there is a lot on Bettys mind, I may be a bit full right now, but not to worry! Anyone who knows Betty, knows Betty loves to eat!

Hopefully my next ramble will be filled with a little more humor.

I think we all need some laughs!

Maybe I’ll go fishing?

 

 

What????

theycallmebetty6 Comments

OLYMPUS DIGITAL CAMERA

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.

images

How was your day?

theycallmebetty7 Comments

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

Gonna pump you up!

theycallmebetty4 Comments

hanz and franz

We are going to PUMP YOU UP!!!

Fighting Leukemia is a long hard battle not for the faint of heart. These men and women struggle with more pain, both mental and physical than anyone could imagine. Their continued inner conflict seem to come from the heart because no person wants to go through something like this! Once you read all the information you then have questions, doubts and wonder why exactly someone would put themselves through endless hours of physical and mental highs and lows. But they selflessly do.

Believe me, these patients don’t do it for themselves! I have listened to a few survivors now, both in conversation and as part of this wonderful network slowly being formed through contact both on this page and other media sources. Each of them all believe saying yes to life was the right thing to do, the responsible thing to do; having treatment was a choice and they all believe they’ve made the right choice. But??

Of the four I am currently chatting with online, each one slips into a sentence these words: I am not sure I will do it again. Or the ONLY reason I went through it all was for my family.

Think about that for a moment. I have been faced with serious choices over the last 20 years in regards to others, and I always tried my hardest to make a decision based on training and what I would want someone to do for my loved one. Never in my wildest dreams did I ever think; what if it was me? What if I needed treatment and without that treatment I may perish?

These loving, kind, vibrant individuals faced with an option, treatment with a 50/50 chance or no treatment and let nature take its course eventually leaving behind loving family and friends. It boggles my mind.

I am overwhelming thankful for the choice my wife made. She was rocky for a minute, but it was only a minute and then her normal, lets kick this things ass mentality shifted into overdrive. I am grateful the people I have met who have survived not just Leukemia but all forms of cancer made that choice letting modern medicine have a shot! I am thankful for where we are in the advancement of treatments for all kinds of cancers, because 20 years ago the outcome would have been very different.

These people are my heroes, I am honored to know them, to talk with them and hear the love, kindness and respect they hold for a new found life. Some are completely different than before, nothing bothers them, and they no longer get upset over the little stuff, waiting for each and every day to greet them with the sunrise. Others hold a new respect for their surroundings, knowing if they hadn’t made that choice how much different things would be today. All of them are grateful for their families, loved ones and friends.

Each one of them is open and honest about their struggles, willing to share feelings both positive and negative, hoping I see in the end it will all be ok. Writing about Leukemia as it decimates a loved one is filled with negatives, it just cannot be helped. But there are positives and these people prove that to be so!

To each and every person battling to live, for your family, your friends, your loved ones, I love you all, I will always share your stories of inspiration to hopefully help another father, husband, friend such as myself. You all make me proud to be who I am, what I am and where I am right now with this life.

With that, I believe it is time we update the wife’s condition.

Wednesday, things were very rough! Jacy still couldn’t walk, pain everywhere throughout her lower extremities. The fevers had returned with vengeance, and vomiting appeared to be an every 30 minute abdominal workout. The doctors pulled her Hickman line for fear of infection and placed a Picc line in its place. She was still heavy on fluids, and any effort to urinate (which was a must every 10-15 minutes) was met with burning pain and small abdominal spasms. When I left her on Wednesday night because I was headed home due to a large fire near our jurisdiction, she was knocked out from pain meds.

Friday I snuck over in the afternoon and Jacy had been moved into the cardiac unit. Fevers were running high without rescinding, she was still vomiting a lot, and her lungs weren’t exchanging oxygen well so O2 saturation levels were very low. She was also diagnosed with HHV6-B

HHV-6B primary infection is the cause of the common childhood illness exanthema subitum (also known as roseola infantum or sixth disease). Additionally, HHV-6B reactivation is common in transplant recipients, which can cause several clinical manifestations such as encephalitis, bone marrow suppression and pneumonitis.[5]

Sooooo cloth gowns, masks and gloves for everyone!!! SCARYYYYYYYY!!!!!

I know you are asking yourselves; hey! Didn’t the title say “we are going to pump you up”? This has all been kind of a downer!

Well MY PEEPS! Word on the street is Jacy was slipped a little steroid cocktail and BAM! Instantly feeling better! That’s right within a day her fevers had subsided and by the end of the next day she could walk the quad without pain!!!! Whoop whoop!

roids

Jacy was moved from the cardiac unit yesterday and once again is blessed to have her very own room. (A luxury I might add). The doctors ran a bunch of tests today which included a colonoscopy and she still has plenty of sores in her throat along with a full body rash. Doctors have stated they are trying their hardest to get everything under control so she may be released to outpatient care hopefully by the weekend!! Way to go Steroids!!!!

Getting her out of there and into the redwood lined, mountainous retreat that is her father’s place will be a spirit builder for certain.

So after a very long storm the first bit of sunlight comes cracking through the clouds and hopefully we will feel the warmth of her smile once again.

A Transplant update.

theycallmebetty10 Comments

Seven days ago the wonder of transplantation coursed through my brain resonating in my soul. Medicine working in ways we could never imagine 25 years ago! Modern medicine is ever evolving and with technology jumping by leaps and bounds in what feels like Nano seconds, medicine of today will become barbaric by tomorrows standards in no time at all.

Seven days has passed slowly for my wife, no wonderment for the miracles of medicine because she remains sick. Very sick..

Being an ever curious man I am constantly seeking new information about Leukemia and its effects, my brain absorbs every bit of information that surrounds me with an ability to understand what, where, when and how which comes from years in a profession demanding we evolve or be cast aside. There are others who don’t see or understand all that is happening to my wife right now and that’s ok, although I believe it to be partly my fault. Whether lost in translation, my inability to properly explain or an annoying habit I have; portraying things to always be a little better than they are for fear of worrying someone, anyone, I feel I have failed to expound the proper information.

Those following my blog understand much about this journey as time has been taken to carefully break down the finer aspects of each portion of this miraculous procedure along with all its uncomfortable after effects. But even with all of the writings many are left wondering and fearful as too all my wife is experiencing. I have tried my very best through each individual explanation anytime someone asks, it makes my heart happy to know so many care about my wife and I never mind the explanations. The curiosity of it all is not lost either. Many who don’t even know my wife have heard of her and want to know more! A little like a reality TV show only the reality is it’s my family not someone we don’t know, cast for whatever reason in a town filled with more drama than character. It is a privilege to share this information with everyone as I hope it opens hearts and minds to what every family battling any form of Leukemia are struggling with deep inside. I am working very hard at not letting any of you down.

What are we struggling with right now?

Like I said, she is sick, very sick. Everyday her body hurts, she is having tremors that last for hours on end, her throat is swollen and raw with sores developing, her bladder is filling with blood and spasming every 15 minutes or so, she has a catheter that comes out for fear of infection then goes right back in for fear of infection from her bladder spasming due to being filled with blood. She vomits daily from the immunosuppressant which is needed allowing new cells an ability to adapt to their new home and her body temperature has been bouncing from 99-104.5! Of course this leads to steroids, ice baths, more nausea medication, more pain medication, another bag of fluids and oh by the way she has gained 11 pounds since the transplant! Unfortunately those 11 pounds are fluid she can’t keep in her cells so a hefty dose of Lasix is onboard which by the way means she needs to urinate every 15 minutes against a spasming bladder. Phew that was a lot!

Jacy has no white cells and this fine tuning of medication will continue until her body either accepts or rejects the new cells. Having no white cells also means she risks becoming life threateningly sick over the simplest of germs entering her system. So every time she spikes a fever everyone (doctors,nurses) worries leaving her worried as well. I become worried too, but that my job, right? She told me something today after an especially hard episode last night where she was seizing and blowing up to 104.5; she said there is no place she would rather be, these were the best nurses anywhere and she has never doubted their ability to keep her going. That is a brave, solid statement from a woman who was frightened not more than a few hours prior with a 188 bpm heart rate.

It is incredibly hard to not be by her side. My worries are beyond control. Jacy had me promise I would be a father to our children first and a husband to her second. She wants nothing more than to have our children busy the entire summer so they don’t have a chance to worry about their mom and I am doing my very best but when I know she is suffering how do I just load up the car and go camping? How do I act like I am having fun when in reality I just want to sit by her side, hold her hand while she sleeps? I never need to do anything when I am with her but smile, kiss her hand and let her rest. I can do that for hours without flinching and it feels like I am making a difference!

For better or for worse, richer or for poorer, in sickness and in health till death do us part.

Those words mean something to me. So I will do what has been asked of me, by a woman who wants nothing more for her children than to be happy. I never in my life thought our marriage would end up here in this place. The strong well spoken, athletic woman who taught two spin classes a day, biked a centurion, ran a tough mudder and always looked for a way to make fitness a part of her day. The mother of four who never said no, running from one sports venue to the next while still maintaining a job, would be so unlucky as to contract Leukemia.

None of it makes sense and all of it seems so unfair.

Regardless, this weekend I am going to do what she has asked me to do. Running solely on faith the kids and I are loading up to go camping. Yes it means I won’t see her until Monday and its breaking my heart. Yes I will be worrying about every minute that I hear nothing about her progress, Yes I will make sure the kids have the very best time by putting on the happiest of faces so they never forget the time they went camping with just dad.

This is one of those times where you trust the one you love, have faith that God is looking over you all and pray that everything will turn out fine no matter what you do.

Thank you to all who continue to lift us up in thought and prayer. I hope I was able to adequately explain her current condition, please continue to pray for her spirits and wish us all luck.

IMG_0828

Promises

theycallmebetty12 Comments

I don’t care who you are or how strong your resilience, when closing a door behind you to a hospital room within a Cancer/Leukemia ward holding the most precious of beings in your life! You cannot help but feel as though things are now permanently out of your control.

And you would be correct, for they are…

Three days ago Jacy and I got into our car. We had a relatively uneventful trip into the bay area, over two bridges, through San Francisco into beautiful Woodside ending on the famous Stanford campus. 19 months, 6 of those in treatment then remission and relapse all leading up to this moment. I cannot describe adequately to what end my brain continues to function. This moment, this very moment, where all I cherish is left in the skilled hands of others. Like knowing your final day on this planet, or being 18 and not quite comprehending that yes you too will one day be 50 then blinking only to recognize that day is tomorrow. It is more than I can handle.

13 years ago I promised to always take care of her, in sickness and in health, for better or for worse; to never leave her side no matter what. I am many things in this life, a jokester, a story-teller, a father, a coach, a teacher, sometimes even an asshole, but when I make a promise I do my very best to keep it! The ability to do so comes from having made hundreds of mistakes, letting numerous people down, lessons learned and realizing who and what you have become after living through personal tragedy and the suffering of others.

I promised her and I have always done my best. When we were trying to have children and nothing was working, I stood strong and promised her it would be alright, we laughed, we cried but I knew God would always provide for those with faith. We now have Parker and Jessica

I promised her that even though we would have no money for a long time we would make it after purchasing our ranch, because we knew it was where we wanted our children to grow up. We moved in with $250.00 dollars in the bank, we understood the payoff would never be monetary but would come from rewards reaped over time by our children. We are making it, it is a struggle at times but our children are amazing human beings, growing and thriving thanks to this place we etched out of the land; and they will forever know where home and family are to be found.

I promised her when we went to Haiti together I would let nothing happen to her or our group as we traversed a country still struggling with political power, corruption and strife. I did my best while on the island serving these beautiful people as local politics toyed with our mission. My promise was put to the test when our sail boat home tipped over in heavy wind and wave. Trying my hardest to hold as many as I could while remaining calm so others would be calm as well all while praying quietly, gripping those I love tightly and doing the best I could not to show my own personal fear I kept that promise.

I have promised her time and again. I have done my very best, but as I write this I am scared. Not something that is easy to admit. For I have promised her this will all work out, she is strong and it will be ok. But I am scared as hell. I am not sure how strong I can be this time. I am afraid of my own promises, that maybe they will be unattainable. My prayers feel unanswered, no calm has overcome my soul as in times past. I am tired of being tested by life, love and loss. I am growing weary and yet this is just the beginning. I feel as though my inner Betty needs a 5 month energy drink as opposed to 5 hour.

Closing this door to her room and walking away, leaving the one I love to modern science and medicine in hopes it will save her life is more than I feel I can handle. I pray she doesn’t suffer as others are currently suffering in the very wing she is assigned. I pray that God sees this woman for all she has accomplished in her life, knowing she has more to do here with people who need her smile, warmth and charm. I pray she heals with little side effects, becoming stronger day by day until she is the woman she chooses to become post-transplant.

I am praying all the time….

Jacy is currently on her 9th dose of chemotherapy in three days. She only has 11 more doses to go. Her spirits are up even though she hasn’t slept. As she puts it, I run to the bathroom, nap then an hour later run to the bathroom again. Her spirit is high, she is still feeling very positive, and I have no doubt she will show me the way as she has always done in the past through her amazing spirit. She is my wife, she is my best friend, and she is my life.

I promise……….

IMG_1925

Thanks Leukemia for reminding me you are still here.

theycallmebetty6 Comments

Three weeks since my last posting, holy shit where did the time go? Apparently Leukemia needed to remind us it is still here?

Seriously what a busy three weeks it has been too! Children out of school, working to prepare the ranch and Jake for a week-long stint in Bishop California for the CHSRA High school rodeo finals, setting Cody up for success in caring for his mother and siblings while we were away, fixing then re-fixing, then repairing only to abandon my truck because she just couldn’t make the trip to bishop hauling our living quarters horse trailer. Borrowing a friends truck (thank goodness for good friends) to make the trip safely, then watching as Jake finished 11th in the state steer wrestling and 17th in the state cutting.  He was the only rookie to make it into the finals for steer wrestling! Something he is and should be very proud of as the finals were filled with some of the most talented kids I have ever seen!

This all leads us to today.

This morning I awoke pondering yesterday and tomorrow. Yesterday we (Jacy and I) spent the whole day at Stanford signing paperwork (you know the dont sue us if something catastrophic happens legal mumbo jumbo), meeting with doctors, understanding the upcoming schedule; more lab work, heart monitoring, and ultimately the dreaded sit down talk where we learn from -0 day-to-day +1 what will be happening to her body and what might possibly happen to her body in the form of acceptance or rejection.

The first week will be 16 doses of chemotherapy so strong it could quite possibly kill her, of course only in a low percentage of patients, but it does do damage to the heart muscle, kidneys and liver. She will be very sick during this time and I will not go into the specifics as it crosses over ones privacy.  Once she is down to zero or no immune system what so ever, she will receive the Bone Marrow transplant, which consists of nothing more than stem cells transmitted through a blood transfusion.  She will be given drugs to suppress the new immune system which have a whole slew of nasty side effects of their own. The new immune system will need to find its way through her body on its own without overreacting to its new home. This will be over the course of the next few weeks and where odds are strong some form of graph vs host disease will take place.

Graph vs host can lead to anything from minor sores in the mouth to minor or major skin irritation to life threatening rejection to which we are told things “could” get quite dicey if that takes place. Phew! Nothing to be scared of yet, right?

If all goes well, the body accepts the graph with the help a few drugs then within three weeks she can leave to outpatient treatment where her caregiver (me, parents and siblings) will monitor everything she eats, her temps, appetite and overall demeanor.  Once she hits the 12 week mark with steady improvement she has the ability to come home.  Yay!

Once at home (get ready for this) Jacy, who lives on a ranch and loves her horse more than most people like their friends; will not be allowed near the horses for up too two years! She also has to wait a minimum of a year just to go back to work and be surrounded by the young minds she loves so!! Listen I can hear you all now: hey at least she will be alive right? Yes this is true. But look at it this way, everything short of your children that you love has been taken away then held right out of reach for you to see everyday.  That would be pretty painful and hard to handle while keeping a positive attitude about survival. You are alive and it does leave something to fight or look forward too, but can be depressing at the same time.

Tomorrow

So tomorrow is that day. WE load up the toters she has packed her life into over the weekend; she kisses her children goodbye (the hardest things she has ever had to do) and we make what I assume will be a very somber, quiet, fear/tear filled trip to her new home for the next three to four months. I will then have a very hard ride home as now I will truly be a single dad with only being able to visit a couple of times a week per her wishes. (her wish is to keep the kids having a normal life and summer before school) Once school starts I will be there everyday if possible, running back and forth to be by her side. She knows what lays in store, she knows there will be days of doubt, pain, sickness and struggle, she knows that the outcome is unknown as to severity of reaction and she knows it is going to be hard, very hard.

She also knows she has a whole crew of people praying, she knows she has the unconditional love of an entire family, and she knows I love her more than anything in the world. In her heart she knows she will beat this and win.

This morning I stared at her sleeping knowing it will be one of the last mornings for a very long time I will see her angelic face next to mine. I fu%#ing hate this shit!

Deep breath, stand strong, we will survive this and she will kick cancers ass one more time!

keep calm