Blog – Page 6 – They call me Betty

The Faces of Leukemia (December 14, 2013)

December 14, 2013 theycallmebetty2 Comments

My face….

Its midnight and I can’t sleep. Facebook says: write something…. But I can’t, not for lack of inspiration but because my writings are more than Facebook can handle, the emotion, my feelings, inner torment. These feelings take more than a few lines to describe, more than a paragraph to sum up into a neat tidy little package. These yearnings, longings, fears, unknowns, hover over my head. They are kept at bay most of the time, squashed into remission by a steel will and optimism. Yeah optimism. The problem with optimism for myself is I am a natural pessimist. The person who says no first than after careful consideration reconsiders my response. Some would call it a natural negativity, I call it lessons learned through life experiences.

Why cant I sleep, what is tugging at my brain causing fear to paralyze me in bed with the light on? Waiting, no, praying the monster under the bed doesn’t come out to play?

It is the darkness.

With darkness comes silence, with silence comes thought, with thought comes sadness and with sadness comes fear. Fear for control I do not have, fear for an outcome which I know not an answer. Fear one morning I will awaken from this dream or nightmare and find myself alone. Now being alone is not so bad, that is when you have someone to come home too. Being alone brings peace, it allows you an ability to discover and rejuvenate your self-awareness. That is unless you are already comfortable in that department. Being alone should be by choice not by design. Being alone should never be forced upon you unwillingly, in a cowardly act or unforseen circumstance. In the end it doesn’t matter what it is,or how it happens, I am scared of being alone.. I am scared of losing my friend, my wife, to that bastard known as cancer.

I roll over in the night and she is there, even sleeping she lazily smiles at me with the brightness of a thousand suns. She holds me in a way that even I can’t explain. I sleep well because her rhythmic breaths sooth me so. A touch of the hand, a brush of the leg, a heavy sigh, they all lend to the comfort that can be sleep. And yet now no matter how positive things are looking in regards to her health, no matter what is happening in our lives there will always be an unknown. The unknown is Leukemia and it will remain hovering over us for the rest of our lives.

How many days do we have? Is it a year, three, five, ten or twenty? What is the outcome and why can’t we know. Doesnt the cosmic powers that be, the holy heavens above know we have children? Doesnt anyone understand the importance of this woman seeing her children grow up, get married, have children of their own? Doesnt my selfish rant have some bearing on our future? Although ultimately, knowing might not make things any easier, bitching about it now in a rudimentary way is cleansing.

Darkness creeps slowly, with it sounds of others sleeping makes me inevitably jealous. Closing my eyes, squeezing them tight, praying sleep will come quickly for exhaustion consumes my very being. Reaching out slowly, nervously grasping a small bead like switch, turning off the light, which instantly turns on a fear. With this fear comes loneliness, with loneliness comes a absurdity in regards to wasted time worrying about an emotion that shouldnt be there since she lays right beside me, healthy (as healthy as one can be) and alive.

I hate you darkness! My heart beats faster, my respiratory rate rises and it becomes easier each time to hate you more! You envelop me, smothering me like a blanket, restraining me as a straitjacket would.. Your coldness leaves me sweating, wallowing in ice water and before I know it I just can’t swim anymore. Darkness you take pleasure in ruining my life, keeping me from the sanity so many others enjoy by midnight. You are to busy feeding my thoughts and dreams waiting for the cloak and dagger game you play to emerge from the shadows. I hate you darkness, I god damn hate you..

So many are wondering what its like, how your life changes upon learning someone you love has Leukemia or cancer. The questions are normal and I love being able to answer them. I am very thankful it is me who gets to support this woman. I am thankful God found a job for me that falls within my realm of understanding. I am thankful that I can hold this woman up, and help her walk through the next 6 months of chemotherapy surrounded by nothing more than our will and love. Most people wonder if there is something more, if there is something better they should be doing with their lives. Not me, God gave me my job, its right in front of me and she loves me to the moon and back. I don’t want to disappoint her, I don’t want to lose her, I don’t want to be alone.. Selfish as it seems…

Fuck you darkness, I hate you, I hate you all to hell….

(Please understand this is just a rant. I am fine, we will prevail, we will kick cancers ass! I am not looking for sympathy or pity, but helping those understand some of the irrational thoughts happening when you are alone, in the middle of the night, trapped with nothing more than the unknown and a crazy brain that refuses to quit thinking. It is after all why I write…)

The Faces of Leukemia (December 12, 2013)

December 12, 2013December 12, 2013 theycallmebettyLeave a comment

Sun shines upon my face, the warmth of its gentle touch brings peace to a troubled soul. I can stand outside, I can walk freely, I can run in the sun like a 6-year-old child filled with glee. I, I, I, I, I……..I can.

Today came the slap in the face we have been waiting for, a realization that she cannot. Yes I knew this, yes I tried my best to shield her from this simple fact. But today not through talk but action, she realized finally and fully that she cannot.

Tears flowed like rain….

A healthy vibrant (although exhausted) mid thirties woman no more than 22 days ago has been reduced to a small stepping, feet shuffling, woman trapped within the confines of her own home. She puts up a wonderful theatrical front for all to see. But once the curtains have closed the orchestra’s plucked its final chord, the seats silenced through desertion. She no longer needs be onstage, whats left of her energy and spirit emerges. For now, a bit broken, for now a bit low, for now a heavy weight upon her heart. For now sadness as a simple act of vacuuming the floor leaves her spirit crushed, her emotions raw.

When she feels as though she “can’t”, she looks into the mirror for strength, what she sees is not what you would expect. It is not the woman who 22 days ago had a full head of hair, its is not the 14 pounds lost from her full perfectly formed body, it is not sadness in her desperate eyes. Desperate only for answers as to why?

It is who she perceives to be the real “faces” of Leukemia.

(These are but a very small portion of family and friends we love and cherish all of you)

These faces that she loves so, who have taken up or absorbed her every waking morning since the moment they first met. The faces of her friends and extended family, the faces of those who uplift her in spirit and love. The faces of Leukemia are far and wide, reaching as a pebbles ripple in a calm lake. Starting out with a small splash, tight and circular expanding, eventually touching every open space upon the water, becoming still upon reaching an open shore.

The faces of leukemia are all those touched by this disease. It starts with the victim, and I say victim because by definition that’s what you are, a victim. Every person within the victims sphere is touched, then every person who is friends or family with those people are touched and the ripple spreads.

One person affected by this disease turns into hundreds if not thousands of people effected. All reaching, all wondering why? Just as Jacy wonders why?

Just as I quietly wonder why?

So how many people can become the true faces of Leukemia? How large would a collage of faces become? What can we do help those people as they themselves process what is happening to those they know and care about?

We gain knowledge and we fight! Not for a week, not for a month, but for a year, and a year after that and we continue to fight! Because Jacy is not the only face, because there are hundreds of thousands of victims out there, hurting as she is hurting, wondering as all of you are wondering and sharing the very same pain and experiences. We fight!

Writing is how I fight. Helping with a Bone Marrow drive that not only will help my wife at some point but maybe find a match for someone else is how I fight. The faces of Leukemia range from a year old to the elderly, they are victims and as I have explained so are their families, friends and loved ones. For them as well as my wife we must fight.

It is not enough to just walk through this world oblivious, thinking this will never happen to me. Because I guarantee if you know someone with cancer, if you have heard of cancer if you have felt the sting cancer leaves upon you then Yes it can happen to you.

So today and everyday we must keep the faces of leukemia in our minds, the faces of all cancer patients in our hearts and we must fight…. Suffering a loss is not an option, celebrating a victory no matter how small is….

We must keep kicking cancer ass, one cell at a time..

The Face of Leukemia (December 7, 2013)

December 8, 2013 theycallmebetty1 Comment

Hair:

We trim it, grow it, wax it, shave it, style it, comb it, do crazy things with these human DNA carrying follicles for attention. Hair, its funny we don’t really think all too much about hair as it’s an assumed portion of our anatomy. From the day we are born all of us walk through life with hair of some kind layering our bodies; some more than others and some less than others by choice, but hair none the less.

But there is an elite crowd of human beings walking this earth. They belong to a very special club. A club that no one wants to join, no one person is standing at the clubhouse door banging fervently to get inside. No one.. Yet rumor has it close to one million people are card-carrying members of this fraternity. One million people have come as close to death as you can get then climbed their way back inheriting a lifetime membership along the way. One million people. Think about that for a second….

So what do these one million plus club members have to do with hair?

They don’t have any! That is right, not one single follicle, not a stray, a sprig, a whisker or unkept eyebrow. It hasn’t been shaven down to the epidermis or plucked by a crazy tweezers wielding lunatic. Every single hair, all 140,000 strands of color enhanced, vanity driven strands are gone.

This of course is the norm when you are enrolled in the chemotherapy club, everyone’s worst nightmare right? Its funny really when you think about it, we as a society put so much emphasis on our hair.

Turning grey or tired of your look- Color it, trim it, shape it.

Falling out- Rogaine

Thinning- Hairclub for men/transplants/comb over

Trends- Shave it, mohawk it, pixie cut, curls, bun, dreadlocks, cornrows, bob, etc..

And yet when it has all fallen out, what emphasis is there? To wear a hat or a scarf? As a chemotherapy club member you never have to worry about haircuts, dyes, styles etc.. All you need to worry about is whether or not your noggin stays warm. There are thousands of hats, scarfs, and bandanas to choose from, or hey just step out like Mr. Clean and rock that shit!

Imagine waking up one morning and finding all of your hair-and I mean ALL OF YOUR HAIR gone. You are lying in a bed of your own hair. Pubic hair, pit hair, leg hair and arm hair and of course the hair from your head. What would you do? How would you feel? Would you smile taking the high road and consider it just another chapter in your already interesting life? Or would you curl up into a ball, terrified to walk amongst the hair gifted for fear of being spotted, ridiculed by the insensitive or pitied by the ill-informed. I am not making a judgement for one way or the other, but if I had my choice I am pretty sure a bitchen tattoo would make its way onto my dome, helping me to celebrate the obvious. I am still alive and kicking cancers ass! Now in no way am I advocating for my wife to get a tattoo on her head. It was purely a rhetorical question.

Why am I traveling down this little pathway? Because that is exactly what happened today. Jacy started officially losing her hair. Its coming out a thin handful at a time, and when she sits up in bed her hair looks like a dog when it sheds. Strands poking out of everywhere with strands littering her pillow. Staring at this and fighting an overwhelming urge to pull them out myself (it’s the ape in me) I found myself pondering those very questions. Thinking about all the times I cracked ignorant jokes about looking as a chemo patient to friends. How would I feel? How would you feel if this was happening to you?

Now luckily enough a sense of humor is what all of our friends and family have and my wife is no different. We have joked heartily about her losing hair and tomorrow I am going to shave it all off to save her from choking to death in the middle of the night on an unruly chia pet looking clump! But just the same it has changed my sensitivity level or judging from that last crack maybe it hasn’t? I digress…

Do you really want to know how much you love someone? Do you really want to understand if you or your partner are shallow and vain? Shave each others heads and see if one of three things happen.

You both laugh until snot blows from your nostrils then fall into each others arms with smiles upon your faces.
You realize in that moment you partner is hands down the most beautiful person you have ever known.
You stare at each other uncomfortably acknowledging you are so shallow that you cannot see the beauty within. Only the trappings of what is on the outside.

Lucky for me as I stated previously this has changed my sensitivity towards others, and as far as my wife is concerned, well I have always seen the inner beauty of this woman. When I look into her eyes and kiss her lips there is nothing else. Bald or full of hair, when she smiles at me the world is a better place. I don’t think she really knows the power her smile and personality carry in this world but I am pretty sure she is about to find out.

Anyways, Jacy already knows how to rock the bandana! That my friends is just freaking awesome!

Kicking Cancers Ass once cell at a time!

The Face of Leukemia (December 6, 2013)

December 6, 2013 theycallmebetty1 Comment

THE HILLS ARE ALIVE WITH THE SOUND OF MUSIC!!!

The joy, laughter and excitement of a young woman twirling, running and singing!

Yes that is the way I feel right at this very moment, for you see the woman I love has been given a bit of a reprieve! There are many unknowns in life but today we worked only on the “knowns” and the news was good, no great! News that our family needed to hear, and it was glorious!

So like a young woman in love, running across the Austrian hillsides, Betty is giddy with excitement! For you see this woman, this friend, partner and wife was told today by her doctor that she will live! She will live! SHE WILL LIVE!!!!!

Ok all funny drama aside, truth be told we went from a 5 year window two days ago to a 10 year window of survivability today! That ladies and gentlemen is huge! This specific strain of AML Jacy is carrying is the MOST treatable of all its ugly little counterparts. No other abnormalities within those strains were detected either wich makes her chances for a longer happier life much more realistic. Tears of joy as my wife can now rest easy with the knowledge that barring any unforseen infections, relapses or just plain old crappy circumstances this woman, this mother of four will see all of her children grow up! For me personally that is exciting news to say the least. No one has spoken of remission yet but as strong as my wife is that is not out of the realm as far as I am concerned.

But through all the happiness, the baby steps towards recovery, the hard-fought singular battles. There lies an undercurrent, a feeling for myself of helplessness as I watch her slowly wither away (yes she is losing weight) unable to walk around the floor we are currently on without exhaustion. Suffering through boughts of diarrhea and nausea. She currently can’t eat because of sores in her mouth, a side effect of the chemotherapy. She doesn’t deserve to suffer like this, no one does, but especially my wife. I want to carry this burden for her more than anything. Ease the struggle, take away the pain, remove worry and doubt. I want to do that for her, I need to do that for her and yet, there is no way for that to happen.

Her hair is finally starting to fall out and no matter how much I joke about it, or promise her she will remain the most amazingly beautiful woman I know, she is worried. Not for herself but for me, for her children. You see what she fears is it will scare the kids and I wont find her as attractive anymore. What she doesn’t understand, what I seem to have failed in all my attempts at communication throughout our marriage is; I see her from the inside out, I have always seen this amazing woman from the inside first. Now don’t get me wrong, my wife is incredibly beautiful on the outside as well! But what makes her attractive, what makes those eyes shine so bright or her smile gleam under a mid day sun? It’s the radiance of her soul shining through.

So how do I convey to her that hair or no hair, skinny or fat, in shape or not, there is nothing that will ever change when I look deep into her eyes. The feeling I get while holding her hand, or the nervesnous still encasing me when she leans for a kiss? She needs to know, and I mean know that we will walk this path together, side by side and I will carry as much of the burden as humanly possible. Fighting cancer is a WE thing, not a ME thing. No one fights alone, no one! And when that someone is the one you love, that trust, that honesty shared between you both from the moment you said “I do” throughout the years evolving and growing until this very moment, is exactly what the two of you use to lean on each other and make it through!

Thanks for letting me get that off my chest, that was little bi-polar moment huh? Happy then somber, well then lets get back to happy shall we?

Now where was I? Oh yes, THE HILLS ARE ALIVE WITH THE SO- Oh to hell with it! We are KICKING CANCERS ASS!! YEAH!!!

The Face of Leukemia (Saturday Nov 30 2013)

November 30, 2013November 30, 2013 theycallmebetty2 Comments

Chemotherapy (often abbreviated to chemo) is the treatment of cancer with one or more cytotoxic anti-neoplastic drugs (“chemotherapeutic agents”) as part of a standardized regimen. Chemotherapy may be given with a curative intent or it may aim to prolong life or to palliate symptoms. It is often used in conjunction with other cancer treatments, such as radiation therapy or surgery. Certain chemotherapeutic agents also have a role in the treatment of other conditions, including ankylosing spondylitis, multiple sclerosis, Crohn’s disease, psoriasis, psoriatic arthritis, systemic lupus erythematosus, rheumatoid arthritis, and scleroderma.

A lot of really fancy words that add up to a great weekend at your local hospital huh? Over the last few days I’ve had numerous people ask me several question about chemotherapy and its effect. More specifically its effects on Jacy.

Heres what I have learned in the past 240 hours.

Chemotherapy is extremely hard on your system as it not only kills the “bad” cell or cells targeted for annihilation, but it also kills all the “good” cells in your system. Hence the reason for a prolonged hospital stay.

While in the hospital you will experience several really interesting phenomenons.

Night sweats-not just your average sweat either. Picture running the Boston marathon. On a 100 degree day. With 100% humidity. While wearing a garbage bag. Over your wool suit. You getting the picture yet? It is not uncommon to fall asleep and wake up in a virtual pool of sweat.
Hot flashes- these aint no menopause, room is spinning type hot flashes either! These suckers come on like a mid summer Texas heat wave! There isn’t enough water in Lake Tahoe to cool these bad boys down.
Shivering- Whilst you are sweltering amidst your hot flashes, praying for something, anything to cool yourself down. Dont fret because not long after your hot flashes arrive the arctic bound shivers and shakes take over. Yep cold as ice, goosebumps so big there should be a hunting season and never ever enough blankets to bring you back to room temperature.
Diarrhea- That’s right boys and girls no treatment for any life altering cancer would be complete without this little gem. Not your average diarrhea either. It glows! Hee hee, that’s right, it’s a bright yellow/greenish almost snap-light looking glow. It’s that special poo that makes a spectacle of itself.
Mass urination need to go pee? Do it! Then in 10 minutes get up and do it again! Remember you have 1000’s of cc’s running through your system and thanks to chemotherapy killing you appetite, that stuff just filters right on through you.
Loss of appetite- yep, best weight loss program on the planet. P90X, the biggest loser and Jenny Craig got nothing on this little regiment of fun! Simple really, just inject your body with near death chemicals then lay around for a week fighting the urge to vomit. Now throw some hospital food your way (uh yuck!) and there is no way you are gaining a single pound sister! Oh snap!
Multiple needle sticks and blood draws- ever wonder what a pin cushion feels like? Well no more, because my dear you are now the human version. Got the runs? You get something to harden that up through an injection. Got constipation, you get something for that in an I.V., need blood, antibiotics, pain reliever, or anything else to counter react what ever you were given an hour ago! In it goes, through a needle stick or straight through an I.V.
Uncontrollable sleep patterns- One minute you are having a nice conversation and BAM! You are ass out for the next four hours! Wake up bright-eyed and bushy-tailed, ten minutes later and BAM! Back asleep for 6 more. Heck you may even fall asleep in the middle of talking with your doctor! Dont worry that information wasnt important! It’s going to be this way for a while so get a really good pillow Rumplestiltskin.
Radioactive urine: Now this depends on the type of treatment you are getting, but once you start chemotherapy no one is allowed to use that bathroom but you! Wouldnt want your coin purse to glow in the dark you know.
Chemo sores in unexpected places. Yep that’s right boys and girls if you pump the system with chemicals and they exit through you urinary tract/bowels guess what? Your skin doesn’t like it very much and reacts with fervor? I’ll just let that picture soak in for a while as you process and visualize your own personal nightmarish looking sores.
Last but definitely not least Hair loss. Complete hair loss. You killed all those “good” cells with chemotherapy which means you killed the cells that deliver nutrients to your hair follicles. So suck it up Telly Savalis. Sinead O Connor has nothing on you. But when you get your triple XXX tattoo please make sure it’s centered correctly upon your neck. I would hate for you to look strange.

Over the last week Jacy has experienced all of these with the exception of sores and hair loss. So far we are attributing this to very careful hygiene and a solid barrier of protection delivered through a specified creme. Diligence has been the utmost of priorities. As far as the hair loss I am still hedging on stubborn Cuban genes, but the doctor has assured us both the hair will go and when it does, she will just wake up one morning to clumps of hair all over her pillow.

Tonight we sat across from each other and played words with friends. I know it sounds silly or even boring but for me it was awesome! She is in great spirits after her first day off chemotherapy. The bathroom is still never far from her reach and the nausea is still there, but her beautiful smile is larger than ever and that kick ass attitude carries the same resilience.

Our doctor continues to remind us we have a long road to travel. The shivers come on uncontrollably and usually arrive about the time she is really starting to feel better. No matter what happens she will need a bone marrow transplant and it will be a long week waiting for the ability to draw her own bone marrow for testing to see where we stand in regards to killing all of the ‘bad” cells.

As many of you know I took the end of the month off because this was the week we were supposed to go away and be together just her and I. A break from children, the ranch and life in general; the type of break every marriage needs from time to time to reconnect. She had been asking for me to make this happen for quite sometime. Apparently she unknowingly decided how it was going to go, and short of not being able to sleep together in the same bed. No bar or drink service allowed, no swimming pool or spa for us to lounge about during the day. It hasn’t been all that bad. We have gotten a ton of alone time, meals (well just hers) delivered to our room, turn down service, cable t.v. and some serious privacy. We have also spent quite a bit of time gazing into each others eyes, holding hands and softly saying “I love you” while the sun sets over the eastern wall of Kaiser.

I couldn’t have asked for a better partner to go on vacation with, even if it’s in a hospital, with a life altering event hovering over our heads. I love you Jacy, you are my best friend, one hell of a partner, hands down the most beautiful person I know both inside and out! As I said the day we married, I cant wait to spend the rest of my life with you.

So lets keep kicking cancers ass!!

The Face of Leukemia cont….

November 27, 2013 theycallmebettyLeave a comment

Fast forward a few days…

From Friday through Tuesday we have experienced highs and several lows. I could bore you with the day-to-day activities but really there is only so many ways you can describe helping your wife get up, put on her socks then carefully assist her with going to the bathroom. She has named her I.V. stand “Neberkenezer” and I have done my best to screw that name up each time she asks, because I know if I frustrate her to the point of laughing she is still fighting. It’s a little known combat tactic I like to call “Taming the Cuban”.

There has only been one major incident and that was Monday morning while I was returning from a short trip home. Jacy decided that since the nurses were changing her sheets she would get approval to take a shower. Having felt pretty strong up this point our Superwoman gets the ok, has the I.V.’s disconnected and wraps her arm in cellophane as to not contaminate her ports. From what I understand it was the shower of a lifetime, warm cleansing, fantastic for a person who hadn’t been allowed to shower since Wednesday. Standing in front of the mirror afterwards she felt a little dizzy, turning around to head out of the bathroom all she remembers is calling for Emma (another AWESOME nurse) as she collapsed and hit the floor. She awoke to an entire team of hospital personnel working one her. What woke her from this unintended slumber you might ask? It was a doctor screaming to his team member to intubate! She mumbled I am fine several times and everyone began to calm down. Jacy had encountered a bout of Syncope.

“Syncope (/ˈsɪŋkəpi/ sing-kə-pee), the medical term for fainting or passing out, is precisely defined as a transient loss of consciousness and postural tone, characterized by rapid onset, short duration, and spontaneous recovery, due to global cerebral hypoperfusion (low blood flow to the brain) that most often results from hypotension (low blood pressure).”

Poor Emma tried to catch Jacy and when she couldnt she tried her hardest to get her onto the couch adjacent to the bathroom. When that didnt work and she couldnt reach her phone she had to hit the panic alarm, this signals “Code Blue” which is cardiac arrest in a room. Needless to say the hospital sprang into action and as my wife put it with an embarrassed smile upon her face; “More people saw me naked in that one moment than have my entire life”!

Needless to say I walked in and was shocked! I looked deep into her eyes, with the obvious strain of a worried husband. held her hand tightly and with a slightly turned up smile said: Really! You couldnt have waited to get naked for five more minutes! Maybe I wanted to see some of that! Ohhhhhhh I get it, its all about the attention! What ever!!! Show off!! We chuckled, I hugged her, then she drifted off to sleep one more time..

The chemotherapy treatment is extremly hard on the body and even through the strongest of human beings it can desmate a persons desire to try. Jacy has kept a postive spirit even when she started feeling as though never getting up again was a viable option. These chemicals have a nasty way of tricking your brain into believing you are feeling better one moment then slapping you in the back, carefully holding thier mind altering thumb down upon you. Its affectionatly known as “Chemo-Brain”

Jacy has slept more in the last week than in her lifetime. Although this is a good thing as it allows her body to work really hard without her feeling anything it also leaves me at her bedside concerned. Not for anything in particular but because I cant speak with her. Just being by her side isnt good enough for me, I have just enough medical knowledge to know too much and not enough medical knowledge to be satisfied.

The what is, the how too’s, ifs, ands, whys all running through my head like a runaway train. By ten at night my brain is so exhausted I cant form a ledgible sentence. So everytime she wakes, I smile, kiss her forehead, help her out of bed and walk her slowly towards the bathroom with Neberkenezer in tow.

We have tried daily to keep her walking as this is vitial to keeping her strong. Her distances are getting shorter as is her ability to breathe under exertion. That is also hard for me to watch as we all know this wonderfully vibrant woman as the spin instructor, runner, horse rider, saver of all dogs, haitian children and all around go getter that she has become over the years.

Our family has been blessed with an outpourning of support from close friends, both of our work associates and the community as a whole. These wonderful souls have lifted what normally would weigh heavily upon my mind as I feel the love and support all around me. I could never have asked for a more wonderful community to have chosen to make my home.

I also have a different understanding of wants and needs. Its one thing to want things, another to need things, but to see somones ability to thrive unwillingly taken away from them makes all those personal wants and needs seem a little ridiculous.

As of Wednesday morning my wife wants to beat cancer. As of Wednesday morning I need my wife to beat cancer. My children need thier mom to beat cancer. My children want thier mom to come home. Our entire family and community need this wife, mother, daughter, granddaughter, aunt, sister, and friend to beat cancer and come home. I will settle for no less, she will settle for no less, I will stop at nothing to ensure this happens, I know she has the fight in her, I know in my heart she will triumph but in the end it really does make wanting or needing anything else seem pointless.

The face of Leukemia

November 24, 2013July 5, 2016 theycallmebetty17 Comments

What does the face of Leukemia look like?

Have you ever wondered? Is it a conjured up image? Maybe one captured from a television show or 48 hours special? A poor soul, haggard, emaciated, pale, gaunt, one step near death. There are a dozen interpretations of what Leukemia looks like.

But I ask you?

Does this look like the face of Leukemia?

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Because it is……

This larger than life human being, my wife with the radiant smile and glowing eyes is the newest face of Leukemia.

Here is her story..

Will you come with me to my doctor appointment?

A question my wife has asked many times in our relationship and depending on the workload that day or severity of anxiety associated with the upcoming appointment, my answer is most always the same. Yes

This time was different.

My wife has been sick on and off since coming home from Haiti in June. Being the incredibly strong-willed woman she is, it was always dismissed as exhaustion, a common cold or some viral snot delivered accumulation from booger flicking within the confines of her classroom.

Headaches, night sweats, red spots in her throat, swollen gums and an exhaustion level that just could no longer be ignored. She had it all at some point. The final straw for superwoman came when she texted a dear friend and Haitian co-conspirator who happens to be her dentist. Having tired from the continued onslaught of over the counter drugs, sleepless nights and white spots in her throat, she caved in to ask for help. After a short dissertation in regards to symptoms the immediate response was; You need to go to the doctor!

She listened.

Blood drawn, panels sent to the lab and a phone call later we were summoned to drop what we were doing and return to hematology for a thorough screening in conjunction with a bone marrow draw.

A bone marrow draw? That means cancer right? Fear instantly ran through my wife like lightning! Together we made the trip to hematology and were introduced to a well spoken, polite young doctor that instantly understood our dry sense of humor. (this always helps) She was fantastic, easing our minds, letting us know exactly what she was doing along the way. After an hour I was dismissed from the room so they could retrieve bone marrow and complete the testing process.

During recovery, the doctor came in and told us she put a rush on the order and we should have lab results by Thursday a mere 48 hours later.

Walking silently towards our car we held positive thoughts. A virus, that’s all this could be, right? Just a mean old nasty virus! In Haiti, Jacy became extremely sick for two days and this just has to be some form of tropical bug! Yep a tropical bug that’s just hanging on wreaking havoc!

Sooner than later we would discover how wrong we both were.

The next day at noon while in the round pen working one of our many horses, my cell phone came alive. Answering a call where the first words are: “I’m coming home we need to talk” is never good, so when she said those exact words I begged her to please tell me what was wrong. To my surprise, she did.

Its cancer, I have leukemia so we need to head towards the hospital right away.

Its cancer? You have leukemia? What? Did I hear this correctly? No. That’s not what she said is it? I mean we talk almost everyday around lunch and I never remember her even slightly referring to these topics. How was your ride today? or How’s work going? or Man my classroom is filled with the most awesome kids! But never and I mean ever has the topic of cancer or leukemia been the center of conversation, let alone a fear filled opening statement.

Are you there? She asked me through shakey tear filled words.

Yep, was all I could muster. Chin quivering, tears streaming, face flush with heat and feeling like someone just kicked me in the balls. I continued to stand there afraid to move, afraid to blink, afraid to breathe.

Are you ok? I asked

No, was her reply. Of course no is the only reply to such an asinine question yet at the time it was all I could say without blubbering over the phone.

We talked for a minute about why the results came back so early and the importance of leaving for the hospital right away. A few moments later we solemnly said our goodbyes. Putting my phone back into my pocket, I continued standing in the arena motionless as my horse worked herself. She continued running circles around me finally slowing to a trot, then a walk, looking at me as if she knew something was wrong. After a few minutes with no interaction from me she moved towards me and put her head in my hand. Animals know, animals that give love in return know how and when to move in at just the right moment. I hugged her back.

My wife cried some at work, gathered herself up and cried some more. Other teachers rallied around her as the news broke, spreading like wildfire across the small campus. She received a ride home from some great co-workers so she could pack for our newly, unplanned vacation getaway to Kaiser hospital. When she pulled in the driveway my heart stopped.

Once home we held each other and cried. We wondered how we were going to explain this to our kids, pondering who should know and who shouldn’t know, wondering when do we call our parents? What are we supposed to be doing? You hear about this stuff all the time but your arrogance never lets you believe it is going to happen to you!

Feeling so confused I didn’t know what to do, how to do it or even how I was supposed to act after finding out the woman I love has cancer. I mean it all seems pretty straight forward until it happens to you! Well none of it mattered, because the news took on a life of its own and before it got out of hand (rumors and all) my wife made a preemptive strike by posting on Facebook exactly what was going on. It worked! We were able to let everyone we cared about know without any chance for misconceptions or the possibility of someone we care about not knowing or hearing third-party from someone else.

My wife has leukemia, my wife has leukemia, holy shit my wife has leukemia, no matter how you say it, it sounds ridiculous, preposterous, and impossible. My wife has leukemia.

Leukemia

Leukemia (American English) or leukaemia (British English) is a type of cancer of the blood or bone marrow characterized by an abnormal increase of immature white blood cells called “blasts”. Leukemia is a broad term covering a spectrum of diseases. In turn, it is part of the even broader group of diseases affecting the blood, bone marrow, and lymphoid system, which are all known as hematological neoplasms.
Leukemia is a treatable disease. Most treatments involve chemotherapy, medical radiation therapy, hormone treatments, or bone marrow transplant. The rate of cure depends on the type of leukemia as well as the age of the patient. Children are more likely to be permanently cured than adults. Even when a complete cure is unlikely, most people with a chronic leukemia and many people with an acute leukemia can be successfully treated for years. Sometimes, leukemia is the effect of another cancer, known as blastic leukemia, which usually involves the same treatment, although usually unsuccessful.
Leukemia can affect people at any age. In 2000 approximately 256,000 children and adults around the world had developed some form of leukemia, and 209,000 have died from it.[1] About 90% of all leukemias are diagnosed in adults.[2]
The name comes from Ancient Greek λευκός leukos “white”, and αἷμα haima “blood”

Wikipedia

Arriving at the hospital we were sent directly to a room on the fifth floor. She was told to put on the standard issue gown and relax. We looked into each others eyes, held hands and sat together on the bed, waiting for someone, anyone to tell us something, anything. A couple who the day before yesterday was riding horses together without a care in the world was now sitting, scared, wondering about the future for ourselves, our children, and our family.

We wouldn’t have to wait long…

Listen up pumpkin!

November 20, 2013 theycallmebettyLeave a comment

My dearest daughter:

You are well spoken, smart and can talk the ear off a deaf priest. You are slowly entering the pre-teen years and this of course means my shot-gun is polished, oiled and ready for action! It also means boys, mean girls, real friends, fake friends and of course more boys! As your father (and a member of the opposite sex who was also young at one time) I am struggling to find helpful advice, nuggets of wisdom to answer the many questions about life as an adult bringing you forward into this world of contradictions safely. Wisdom that will mold you, shape you, ultimately defining who you become as a woman. One would think by using my personal experiences you might glean valuable information into the future but our world has changed drastically and yet oddly enough in some respects remains painfully the same.

Hypocrisy

In the world of today you my daughter will be expected to stand strong, ooze intelligence and roar loudly until heard! Of course this is only after a man has spoken because you are after all a woman with a small brain, with a brain a third the size of us men, its science. (sarcasm)

You will be expected to work twice as hard, put in long hours and strive to be the very best at what you do. Then watch as male counterparts do half the work with a quarter of the effort while enjoying the same benefits associated with higher pay and owning a penis.

You must learn to dress appropriately for a job. Unfortunately in our world that means treading a fine line between appearing as a stiff uptight bitch or an easy boob busting slut. It doesn’t matter what you choose someone will find you to be one or the other and depending on your choice of careers that could be advantageous, purely disastrous or end with your own reality television show. Fingers crossed for that last one!!

Understand my daughter that sexual harassment training has been developed for your protection. Thousands of hours (and lawsuits) have helped define the workplace for the modern woman! Yes thats right men did that through idiotic blunder and sexual abuse! You are welcome! Now you must sit through countless hours of training, helping you to understand the protection afforded you from yourself, from others, from a boss, a secretary, heck in some states even your dog. You will have the security of knowing sexual harassment does not go both ways, even though the two-way street of male harassment by a female co-worker is discussed during class. You have nothing to worry about because no self-respecting man will ever stand up and say he was sexually harassed by another woman. In the mans world that’s known as moving up the ladder.

In this modern liberated society, where are all human beings are supposed be on equal plains, you must remember your place my dear! It doesn’t matter that you hold a full-time job, or are a CEO, my daughter when you get home after a long day you must ensure household bathrooms are scrubbed, dishes done, laundry finished and dinner placed on the table by the time your “man” gets home. Why? Because that’s what society has learned from every advertising agency across this country. Every television sitcom since before Leave it Beaver! Just turn on the TV and notice who the advertising is geared towards. Hint: It isn’t men, domestic partners, children oh no! It’s all geared towards women still running the household and slaving over every aspect of their families life! But of course its easy to see why, because while watching these advertisements women are either married to the stupidest man in the world, are struggling single mothers or are surrounded by little genius children who dare not lift a finger out of fear Harvard will call cancelling their tuition. Wait no that is real life, so forget that, you are screwed.

Your love life can no longer revolve around finding a partner, falling in love and living happily ever after! Todays woman should date as many men as they want, date them all at the same time (they do on the bachelorette) play mind games with them as though you are on survivor then cast them aside for fun! Hell it’s what men have done for years so good for you! Marriage is an oxymoron anyways! But be prepared, as with your male counterparts you will be labeled a variety of names and most of them posted to your Facebook page, or at least linked to it! No longer just fodder for someone’s amusement inside your inner circle, by the water cooler at the office or gossip within the grocery store or PTA meeting. Now there is a Facebook page dedicated to your demise. Don’t worry only 500 likes so far. If you are lucky it will hit a thousand before the day is out moving you up in social status! Good job Snooky!!!

Eat to stay healthy, or skinny, or skinny and healthy! You know what I mean, our society has plenty of chocolate covered everything to help you keep that unwanted weight off while pandering to your obvious weakness as a woman for sweets! So plunge into those chocolate fiber bars or 0 calorie yogurt cups that help with digestion. Hey they are all there to ensure you become much skinnier then you really need too, helping you fit into that size 0 dress. You know why? Society says so fat ass. The modern-day, Abercrombie and Fitch social scale of lard goes something like this; Size 4 you are a pig! Size 5-blimp! Size 10-rehab for food addiction. HEELLLLOOOOOO!!!! Size 0,1,2 or 3 and well its obvious you aren’t eating enough and in need of serious help you crazy bulimic! But shit its ok because you look FABULOUS!!!!! Remember Binge and Purge!!

AAhhhhh my little strudel, don’t get discouraged at least your man can eat what he wants when he wants and that should satisfy you emotionally. Remember if a man looks a little overweight he is considered “slightly out of shape”. If a man has a belly of any proportion its obvious he is spoken for and well taken care of by some generously loving woman. If a man is sculpted with chiseled abs its quite obvious he is either gay, bi-sexual or a slutty player in which case you should have no contact with this handsome prick what so ever. (Just ask your father)

Drink beer and belch with the boys, you will be forever known as a rude, classless hick. (Tomboy) Drink wine and hang with the girls you are of taste and elegance ( Snobby Bitch). Drink hard liquor at the bar and you are a “Ball buster”! (Dyke) Don’t drink at all? (Square) In which case you might as well spray yourself with man repellant, cause you soda water sipper are probably a granny panty virgin. (not that there is anything wrong with that)

Speaking of underwear. Thongs are the greatest underwear ever invented! Just ask any guy they will tell you! What they wont say to your face is once a thong is spotted you are labeled, easy, a tramp and everyman is looking for that little Y at the top of you dress line or peeking out from the edge of your “skinny” jeans the moment you walk in the room and bend over. Like a heard of wolves searching for a wounded rabbit your scent tracked and observed from the quiet corners, crowded tables and single seats lining a room! In the mans world it is a rite of passing to be the first reporting a thong sighting! Yet hhmmm, you never seem to catch a woman drooling, slinking around behind men looking to see if they catch a glimpse of those Hanes briefs or boxers? That’s right the thought of a vagina cradled just so, far outweighs a mans premonition in regards to the banana hammock as Gods gift for all women to behold. But don’t worry sexual harassment be damned at some point the truth about you both will come out! Can you say office Christmas party or coffee corner drivel?

Drive a Subaru, Miata or 4×4 truck and you are self-righteous, country hick or gay. Drive a mini van and you are a soccer mom, drive a high dollar foreign car and you are a mafia wife (well taken care of). A man can drive what he wants (except the Subaru) and he is either thrifty, fun-loving, intelligent or a hunter. Sucks huh?

When you do decide to become a mom life gets better in the social world of today. The mini van is a must or else you wont fit in with the cool moms. (competitions to see who can haul the most kids to meets, games etc..) If you and your husband work and raise kids your husband is a selfish bastard and you will always be seen as frustrated and incapable of handling all the challenges associated with basically being a married single mom. If you put the children in day care you are heartless, uncaring and shouldn’t have brought children into this cold, hard world. But don’t worry, because your full-time working husband is still selfish and insensitive in regards to your emotional suffering. If your husband stays home to raise the children and you return to a full-time position, well then society thinks your husband is a complete failure and shame on you for forcing him to stay home and take care of your kids! That’s right my dear it’s a lose, lose for everyone, especially the children.

I could go on an on but this is just a small sarcastic glimpse at what awaits you as an adult woman in today’s world. So my advice to you is this. Remember your dad is always here for you and will support you anyway I can, then tell the world to kiss your ass and do what you want to do! Live life the way you want to live it, heck that’s what I did and so far its working out just fine….

Seriously though stay away from the chiseled abs guy, he is only into himself and he is nothing but trouble plus I am not ready to turn a nickel in a state facility for hurting him badly.

Love,

Your DAD

Brain Freeze

November 17, 2013 theycallmebettyLeave a comment

Well my darlings let me take a moment to apologize for my current lack of substance! You see there seems to be a wee bit of a problem with my writing style lately. There is none! No style, no words, no wisdom, no funny stories, no nothing! Just me, sitting behind my desk, staring into my computer screen wondering, hoping, praying that something, anything will end up written on this blank page before me. This usually ends up with me daydreaming about chocolate instead.

It actually isn’t even centered around what I may or may not have to say. There are tons of ideas swirling around in my head like fresh spun cotton candy! My problem stems from being able to capture these little gems as they whiz by from one side of my brain to the other. Just when I think I have one of those squirrely little buggers captured for exploitation, my brain just FREEZES! That’s right all active brain matter freezes leaving me with the look of a pale-faced fresh corpse at the county morgue.

It also appears that my ability to type has lost its “mojo”! For some reason I went from a self-taught keyboard wizard to johnny hunt and peck! My thumb is whacking the space bar at random and my left hand seems to be encroaching upon the right hands territory without permission! There is a full-scale war going on between the two of them within the boundaries of 78 little tiles of statehood. The flashing position line on my screen has advanced and retreated more times than I care to count! And for whattosugrste thatg theredsi nope hope form e anyymogre? SEE WHAT I HAVE TO DEAL WITH!

I can’t tell whether Alzheimer’s is taking hold or I am just losing it mentally from stress? What was I rambling about again? Oh yes, Jello in the cafeteria is really quite good if you get it just after it comes out of the cooler.

Dogs and cats will never get along, women will always wonder why men feel the need to fix everything and children no matter how hard we try can and will never allow you to get out of the house on time. Wait… sorry, sorry, my bad, wrong storyline.

So as I was saying, my brain is fried, my ability to cope shattered and I promise, any day now between a cup of coffee and a fifth of whiskey more stories about life, love and the pursuit of happiness, I mean children will be forth coming.

Heavy sigh…

Betty….

Reflection

November 6, 2013 theycallmebettyLeave a comment

Your eyes squeezed tight, small arms wrapped around my neck with the grip of a sailor, a body so small and warm, full of love, wonder and amazement. I can do no wrong, say what I please and its funny. You love me.

A lizard in a hand, dirt under your nails; you ask questions about anything and everything. Why is the sky blue dad, why are the stars bright dad, why do cats hate water dad, when is mommy coming home dad, why do you burp when you drink soda dad? They never stop these questions. Secretly, even though I sigh the heavy sigh while moving in and around the house with you in tow, I like these questions. You son are developing a sense of inquisitiveness that is inspirational. I answer each one the very best I can and the look on your face after each answer is priceless. You love me.

Crying, screaming, it can’t be done dad! There is no possible way! Horrible shrieks of nonsensical gibberish spew forth from your mouth as time after time I push, you fall. Peddle I scream, leave me alone you bellow in return, NO I retort; now point it straight and peddle the darn bike! Gritted teeth, glare of a thousand deaths and finally you are riding your bike! No more falling down, no more drama or tears, no more hearing “I can’t” leaking from your lips! You ride by me, big gaping smile, laughing, giggling, and then laughing some more. I have set you free, you love me…

Getting up to one knee, tears streaming down your face, I walk towards you fighting every urge to run. As a young person striving to become every bit the man you envision nothing would destroy your self-proclaimed reputation more than your father running towards you after you have fallen down. For the tears are not for any pain you may feel, a scrape, broken bone, or sprain. No the tears come from the second of fear you felt as this 1000 pound animal got the best of you, the tears also hold a smidge of anger. Anger within yourself as you didn’t sit that ride; you knew better than to give to this studs unyielding ways but as he charged and bucked at another horse you looked where you shouldn’t have looked, pulled when you shouldn’t have pulled squeezed when you shouldn’t have squeezed and he got the best of you. Oh don’t get me wrong, you rode him long and far (for that I am beaming with pride) but in the end the horse won out and that tear of embarrassment stings the most. So up you stand dusting yourself off, clearing your spurs, wiping the dirt from your face. Walking across the arena you gather him back up as he stands patiently waiting for you, wondering himself what just happened. You have forgiven him because it’s in your nature, but he will not get the best of you again. You ride by me; smile a dirt covered smile and then slide slowly back into the herd. You love me…

Got one! A message relayed time and again from both sides of the boat as fish after glorious fish are reeled in, then landed. My daughter on one side, my youngest son on the other with my oldest and middle son working the lines helping me keep tangles from happening and hooks filled with bait. Somewhere in the middle of our journey I gave up fishing for myself. The two older boys seeing their dad tire from keeping lines jump in to help take the pressure off. We all laugh as the middle son talks my daughter into kissing the fish! But kiss the fish she does and then tosses back into his face! We laugh and laugh some more as stripers are caught and tossed back into the water. One child hooks a flounder and another lands the largest crawfish I have ever laid eyes upon! As the sun slips out of sight our old blue boat slowly putts its way back to the dock. Not a noise can be heard as they all stare off into the distance, tired, well fed and filled with family. They love me..

You left in a hurry, a trip of great importance, wishing I hugged you one more time, I am left here wondering how things are going, what is happening, who you are meeting, if it’s all you dreamed it would be! Time ticks away and I act like it’s no big deal but inside my stomach is turning in knots! You have spent your entire life trying your best and with small adjustments here and there you always have succeeded. I know this is what you want, I know it means a new start and I must let you go, but my heart aches at the prospect. So I wait.. 12 hours, 14 hours, like a faithful hound dog, I wait and wonder.. You send me a picture of you and your childhood friend, smiling from ear to ear holding acceptance certificates! You have succeeded like I always knew you would, my eyes are filled with tears, my throat is tight and dry, and soon you will be leaving us. It hurts but feels so good at the same time. The first on my side of the family to get into a four-year college, your mother and I are beside ourselves! Pride, joy, and excitement fill my senses as we look forward to all that awaits you. As your father, you became everything I dreamed you would be and the world is just waiting for you to take it and do with it what you want. I love you…

I am a lucky man to have four children to love; they have filled my life with emotions I never dreamed possible. Each one of those paragraphs describes a moment spent individually with a child, starting then ending with my oldest. These are moments that will forever resonate inside me for one reason or another; a look, a smile, a tear, some pain; They are all important and weave the fabric that is our family.

I am lucky to be so loved…..

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