parenting – Page 5 – They call me Betty

Leukemia’s house of horrors!

January 9, 2014January 9, 2014 theycallmebetty5 Comments

Phase two of AML treatment. The beginning of ongoing chemotherapy or Consolidation Therapy (CT) as it is known.

So what does that mean? Quite simply it means that Jacy’s immune system has bounced back to epic proportions. But because the original treatment was a bombardment of all aspects of AML she was exposed to many different drugs that all had different jobs. Thier goal was to kill everything, both good and bad! The nuclear bomb of cancer treatment! The primary drugs classes for this procedure fell upon Alkylating Agents and Antimetabolites.

Alkylating Agents:

Alkylating agents directly damage DNA to prevent the cancer cell from reproducing. As a class of drugs, these agents are not phase-specific; in other words, they work in all phases of the cell cycle. Alkylating agents are used to treat many different cancers, including leukemia, lymphoma, Hodgkin disease, multiple myeloma, and sarcoma, as well as cancers of the lung, breast, and ovary.

Because these drugs damage DNA, they can cause long-term damage to the bone marrow. In rare cases, this can eventually lead to acute leukemia. The risk of leukemia from alkylating agents is “dose-dependent,” meaning that the risk is small with lower doses, but goes up as the total amount of the drug used gets higher. The risk of leukemia after getting alkylating agents is highest about 5 to 10 years after treatment.

Antimetabolites:

Antimetabolites are a class of drugs that interfere with DNA and RNA growth by substituting for the normal building blocks of RNA and DNA. These agents damage cells during the S phase. They are commonly used to treat leukemias, cancers of the breast, ovary, and the intestinal tract, as well as other types of cancer.

So as you can see these are some pretty harsh buggers and can make a person very sick while performing their duties. The problem is even though they kill everything and Jacy’s counts have rebounded with astounding veracity there still could be stragglers. Evil doers hiding, lining her sacred DNA, waiting to join up forming an alliance, then pouncing on her fresh new unsuspecting immune system!.

Because of these sneaky little bastards we are in Consolidation Therapy. So what is Consolidation therapy(CT) ? Well I am glad you asked, Consolidation therapy is:

Treatment that is given after cancer has disappeared following the initial therapy. Consolidation therapy (CT) is used to kill any cancer cells that may be left in the body. It may include radiation therapy, a stem cell transplant, or treatment with drugs that kill cancer cells. Also called intensification therapy and postremission therapy.

So as you can see Consolidation therapy (CT) is very important. It is the clean up crew of cancer treatment. The crew that cleans up the stadium after a ball game. The squad that ensures a scene is all clear after a major crime. The Firemen that perform salvage and overhaul after a fire. The-oh well you get the point.

Jacy’s CT consists of Cytarabine. Now one may think WHOOO HOOO, only one drug instead of 4 or 5! But let me tell you this one is just as evil as the rest. You see when taking Cytarabine you must first be medicated with pain and anti-nausea medications! Because if you aren’t, hello toilet! Watch me steer the porcelain bus! Pray to the Sloan valve gods! Kiss the tile floor! To make matters even worse some patients will develop a fever, body rashes, red eyes, and of course exhaustion.

During treatment your doctor will test your blood on a regular basis. Not just to see if Cytarabine is wiping out any stragglers but checking your kidney and liver functions ensuring it’s not killing more than it should.

But hey whats a little vomit, itchy skin, red eyes, exhaustion and possible kidney damage when it means you will live! Right! Am I right?

Luckily enough Jacy only had a few of the symptoms and is doing remarkably well! She is going to beat cancer, we are witnessing it first hand. She is going to become stronger and live a long and happy life.

So how do they administer the CT treatment? I am so glad you have inquired!

It is done through a port placed just under your skin. Since she has to under go three-week long treatments over the next three months in the hospital, instead of placing a Picc-line (acronym for Peripherally Inserted Central Catheter) into her arm every time she comes into the hospital an out-patient surgical procedure is performed to place a small port (PowerPort) just under the skin for easy access to a vein for administering drugs. (see picture)

On Monday we arrived at the hospital at 7am for admission. Jacy’s surgery was scheduled for 11:30 and by 1:00 she was wandering back out into the lobby. Procedure finished, right side of her chest numb, black and blue and swollen. She was supposed to start chemotherapy at 3pm but by 5pm we still had no room available as the hospital was full.

Around 7:30pm a room finally opened up, we got settled and lucky for us two of Jacy’s favorite nurses where on and had been assigned to her for the evening. Watching her start the pain medications and anti-nausea drugs, we knew it was going to be a long night. Jacy felt I should go home to be with our children, and like a good husband I did as I was told; but only because I knew she was in great hands. Kissing her good night, looking into her gleaming eyes, little did I know the hell she would go through not more than three hours later.

0800- Jacy calls me gravely voiced and sounding weak; asking if she was ok; she says no. You see the PowerPort site was so swollen and inflamed no one could make contact with the palpation points to locate the insertion site. They grabbed it manipulated it, poked at it trying to insert the PowerLoc infusion device and nothing. Now imagine 12 hours earlier someone cut open your chest in two different places, inserted a device through one opening just under the skin then fed a line down into a vein at the other insertion point, then sewed it all up and sent you on your way. Now pain meds have now worn off, it hurts like hell and people are grabbing it, pulling on it, doing everything they can to stick a needle inside of this bruised swollen section of skin! Not maliciously mind you but trying their very hardest to perform this manuever quickly because underneath this swollen, inflamed area and little plastic device lays a 146 pound woman screaming and crying in pain! Proclaiming to all that will listen this pain is worse than childbirth! (that is saying something)

Both of Jacy’s nurses were crying too as they both love my wife and the thought of her hurting was crushing them inside. One nurse refused a doctors suggestion of going straight into another vein to start the procedure because she knew Cytarabine had a high probability of collapsing the vein at insertion point. They were wonderful advocates for my wife. After four failed attempts over a few hour period, additional pain medications and a lot of prayers, one of the nurses asked Jacy if she thought she could bear one more attempt. Through gritted teeth, screams of pain and sobbing tears from all involved they got it first stick. Chemotherapy started.

The nurses all met with management to implement some changes in regards to the insertion of the PowerPort device. The Powerport device is usually inserted a few days prior to the patient receiving treatment. This allows the insertion site to recover, swelling to diminish and a healing process to develop a good strong foothold before someone pokes it with a needle. Through the dissipation of swelling the palpation points are also easier to locate. It came about that all patients with same day insertion will have the adjoining PowerLoc insertion device put into place. No more torture sessions for patients to start Chemotherapy.

Today Jacy is doing much better. First round is going very well and she feels like a prisoner trapped in a room. At least this time she wont be trapped there for 21 days. She comes home on Saturday night or Sunday morning. She will be confined to her room until her white cell counts rise to normal levels. She will be extremely immunocompromised. She will be extremely nauseous, she will inevitably become a tad bit cranky, but she will also be one step closer to beating this disease. One step closer to returning to a normal life, one step closer to seeing her students and one step closer to placing this chapter of her life in the books.

She will have kicked cancers ass.

The Face of Leukemia- Just look at me, really its ok.

December 27, 2013December 27, 2013 theycallmebetty6 Comments

Bald is beautiful

We’re all born bald, baby. – Telly Savalas

I collect hats. It’s what you do when you’re bald– James Taylor

It’s a great event to get outside and enjoy nature. I find it very exciting no matter how many times I see bald eagles –Karen Armstrong

What’s so brave about being bald? I’ve not fought for my country or found the cure for cancer I’ve just gone out without my hat on! -Gail Porter

You know it is interesting to me this stereotype associated with being bald. If you’re a man, it’s obviously genetic. Poor you, trudging through life with the same cranial cul-de-sac formed upon you as your father and his father before him. Unless of course you are a skinny, emaciated man then you must obviously be dying from some rare form of cancer. Or you just happen to be Billy Corgan jr. or Michael Stipe then ROCK ON DUDE!!! BALD ROCKS YEAH!

But what if you are a woman? Sinead O’Connors’ shiny domeness was by choice, a political statement against a traditional view of women. (well-played I might add) But what if you don’t have her “balls”, what if you are brought screaming and kicking into baldness? Seriously think about this, in our society a woman unfortunately is judged the moment she walks into a room. Not for her sunny personality or Mensa card-carrying IQ. Nope, she is judged for her looks. Make-up, clothing, body weight, eyes, breasts and of course her hair. That is right, men will either ogle a woman within the first 30 seconds, ponder ogling her over the next 30 minutes or write her off. In the mean time women within the room will smile to your face and talk shit the rest of the evening. Sorry ladies its true, I have witnessed more than my fair share of character assassinations based on any one of the above criteria not being met to perfection on more than one occasion.

People get real comfortable with their features. Nobody gets comfortable with their hair. Hair trauma. It’s the universal thing-Jamie lee Curtis

So imagine, carrying this social pressure your entire life only to wake up one day without one of these aforementioned 6 major sight line musts for survival. What would you do? How would you behave? Would you curl up into a ball and cry or say fuck it and march boldly into the world claiming my hair will not define me!

Jacy lost all her hair on or around the first week of December. It has gone from sadness to a fun playful experience then one of empowerment! She has come to terms with this loss, worn a few wigs to help with a social awkwardness associated with a woman not having hair, and in the end decided that 9 times out of 10 bald is beautiful.

Now while none of us can say with certainty what we would or would not do as it has not happened to us personally, I am proud of my wife for taking this strong-willed, brave stance. She does indeed have a perfectly shaped head and I think she is hot, hOT, HOT bald! Really, like she could never have hair on her head again and it would be ok with me! The woman is drop dead gorgeous! Throw in her stunning smile, caring heart and amazing personality, well ladies and gentlemen we have the trifecta of baldness!

But let me say this before I drone on too much about the woman I love and her shiny new dome. When we are out in public.

I see you.

I see when you stare at her as though it is wrong for her to be bald.

I see you when you look behind her and sigh as though you just cant relate. It’s ok, we understand if you cannot, but please don’t be fake.

While eating in a restaurant I see you staring, with your smart ass smirks, elbows flying into each others ribs while walking by outside. Moron it’s a window, if you can see us I can see you!

My ears may be 47 years old but your mumbles are not quiet enough. She hasn’t lost her breasts and even if she had you shouldnt be staring trying to figure it out so don’t look, she isn’t skin and bones so quit guessing her weight, and yes she lost ALL her hair, so stop wondering about places you cannot see and how much wax is being saved.

If you are going to stare don’t look ashamed when I make eye contact with you, walk up and ask questions, we are always open to discuss Leukemia and its effects upon our lives.

When you do have something to say, dont automatically behave as thought this is her last day on earth. The news media has ruined the public in regards to behavior when confronted with a bald woman. Smile say hello and ask away with glee! We are happy to be here and so you should be as well. Who knows the bald woman you talk with may have alopecia, thusly not really needing you to pray for them, unless you feel that will raise hair follicles from the dead?

If you have had a couple of drinks, your inhibition is lowered and you feel as though it is the perfect time to act like an ass with rude or inappropriate comments about this beautiful human being or any like her that may be in my presence, understand this, I WILL make it the very worst night of your life. I promise..

When my wife takes her wig off in the middle of a store and it shocks you, just chuckle. It is funny, we laugh about it all the time and will laugh with you I promise! But if you can’t chuckle politely than at least close your mouth, that looks funnier than her bald head and we would hate for you to feel bad about yourself.

Remember, people going through chemotherapy are no different from you and me. Most of them have an incredible sense of humor, some have survived the very worst of treatment, others are still dealing with an inner loss while a few are looking at just making it a few extra days. These people, these priceless examples of survival and strength, still need to laugh, love, talk, and feel. They still need to be accepted as the very same human beings they were before cancer. They know they are not the same inside and nothing will ever change that, but what they don’t need is to be reminded through ignorance, insensitivity and callousness.

Look into the face of cancer, tell me what you see.

I see LOVE…

The Face of Leukemia (December 18, 2013)

December 19, 2013 theycallmebetty4 Comments

SSSHHHHHHHH

Do you hear that? It’s the sound of silence. Normally right now I’d be cozied up in my captain’s chair, shorts on, comfy t-shirt, freshly showered with a hot cup of tea off to my right. Then carefully place my iPhone ear buds into place and with the stroke of a finger, “classical to study by” gently lulling my senses, firing a few neurons, stimulating a thought process into action.

But not tonight.

Tonight there is not a sound echoing through the corridors of our home. Four children off to sleep, two dogs snuggled up to a few human blankets while one stands guard at the front door and the other ones at my feet. I’m still in my shorts, we are out of tea and the silence is just to grand to ruin with any music of any kind. Yep pretty nice..

All Neurons firing properly.

A moment of pure heaven like this seems the perfect time for a bit of reflection covering the last 29 days.

Iran agreed to limit their nuclear development program
Chinese Spacecraft Change 3 safely landed on the moon
Paul Walker, Ray Price, Peter O’Toole, Eleanor Parker and Jim Hall all passed away.
Nelson Mandela as well walked towards the light.
Hanukkah has begun and Winter solstice is upon us.
School shooting in Colorado
Hospital shooting in Nevada
Oh yeah and that whole my wife was diagnosed with Leukemia starting a scary fight for her life.

Oh hey that last thing! Yeah funny thing about that last one there, because of that little bullet point I knew none of those things above it happened. Can you believe that? It appears as though my full focus was on one thing and one thing only. Apparently there was neither time nor wanten for me to flip on a television and search out these wonderous revelations. Seems as though reading, learning and living a life of leukemia can really skew a fellas sense of priority.

Case in point; just prior to cuing up the old blogger keyboard this evening my finger (on its own of course as I would never) clicked upon the Yahoo banner and up popped all these top headlines Yahoo believes I should know about. Amazingly enough not one of them held an accurate title as most were standard stretched truth “catchlines” instead. It also seems as though most stories revolve around “celebrities” as if our lives would wilt into the unknown without our latest gossip over Kim K or what the Jackson’s are suing over in regards to their dead iconic son. What wonderful philanthropy has lofted Brad Pitt to sainthood and why the hell is Angelina Jolie 98 pounds? So it seems as if by worrying about the effects of Leukemia upon my wife and our family, worrying about the hundreds of thousand United States citizens suffering from Leukemia and other forms of cancer every second of every minute of every day. My thought process is severely flawed. According to polls and data it appears the American people don’t care, but what they do care about is the Real Housewives of some dumbass city? Or perhaps how millionaires actually need assistance finding a date! Really? You are worth millions and you need to waste your money using Ms. Smartypants to find someone for you? COME ON! Not buying it! Then of course there is Kanye laying it all on the line, like a police officer or soldier, risking his very life to entertain us poor lowly citizens. Yep over the last 29 days I got it wrong…

I always knew being so wrong would feel so right!

So here I sit very content with these current choices as my wife sleeps soundly. Gone are the night sweats for now. No more needing to have me fetch a pain reliever at all hours of the night. Gone is that horrible aching pain associated with a feeling of her bones exploding while creating new life within her blood stream. Gone is the never ending headache. Gone is also her hair, all of it, everywhere, seriously, ok except her eyebrows which so far is pretty cool. But man can you imagine waking up one day to find all your hair is just gone? Can you? But anyways you know what isn’t gone? Her beautiful smile.

Jacy’s smile as I have written in the past is one in a million. Leukemia has not taken her smile from her face. She wears it proudly each and everyday. Leukemia is keeping some of her energy, which is to be expected, but even that is a battle she is slowly starting to win!

We met with Dr. Truong today and we still have a long road to go with 3 more consolidation therapies planned. (One week a month, for three months in the hospital for chemotherapy) We are also being referred to Stanford for a possible bone marrow transplant. Once at Stanford more data will be in and all our options will be revealed. But in the end, we are way ahead of schedule, her white cell counts are through the roof and the last marrow draw showed no immediate signs of Leukemia! We are beating this monster handily! Wait for it, wait for it, YES everyone that means we ARE Kicking Cancers Ass One Cell At A Time! Ok not really we but she…

So in the end I think I will keep the television off. In the end it appears that maybe just maybe whats going on around me, in my personal life might be a bit more important than whether or not Mylie Cyrus’s life IS a wrecking ball.

And at the end of the day, I think I’ll just sit here, relaxed, enjoying these tiny moments knowing the woman I love is sleeping peacefully and because of her will and tenacity I get to enjoy her for yet another day..

The Faces of Leukemia. Today

December 16, 2013 theycallmebetty2 Comments

Today the faces of leukemia came from far and wide. Gathered in a small gymnasium to help support a teacher, a mother, a wife, a friend. They came from church, a walk on a warm Sunday afternoon, they came from the store, Christmas shopping, from watching the football game, but they came. They came to be tested, a simple DNA swab of the cheek looking to be the next bone marrow transplant match!

Today the faces of Leukemia looked me in the eyes. Some cried, many smiled, almost every one of those faces hugged me. People I have never met, people who know people, who know my wife, people who know people, who know other people who know my wife. People.

Today the faces of Leukemia were happy, excited, the way one is excited at an opportunity to win the lottery and in an offhanded way they did have that chance. Becoming a bone marrow match is truly (in my opinion) an honor. One bestowed upon a “hero”. Because that’s what you are once chosen. A Hero! You now have the ability to change someones fate. Helping save a life simply by donating something you have matching something they need to survive. If that isn’t heroic then I don’t know what is!

Today 193 people made it into Blood Sources registry! ONE HUNDRED NINETY THREE new members of an elite club, praying they are chosen to receive that call! They may never get the call but like winning the lottery even though the chances are slim, you can’t win if you don’t play! And play they did!

Today the faces of Leukemia continued to come and go, many I knew personally, more I did not. This day, this Sunday in a small school gymnasium, I hugged more people than ever in my meager life. Each and every one of them who asked or just greeted me with a hug received the very best hug I could give. It was least I could do to say thank you on this day, today.

Tonight my heart tonight is overflowing with love. Emotionally spent, tired, typing this is extremely hard as for once finding the right words to describe these feelings is challenging. My family is like everyone else’s family, we work hard, go to school and church, we donate when we can and always try to help our fellow neighbor. We are nothing special by any means. But today it felt as if my wife was a rock star! She has always been one as far as I am concerned. But I guess our little town thinks so too! So humbling, so amazing, so inspiring, so much love and admiration held for everyone who helped run our bone marrow drive along with every single person who took time from their day to come down.

Today when we opened the doors at 0900 and started setting up I prayed we would get at least 50 people. 50 people would have been awesome, as 10am rolled around some friends came by and a few more trickled in. My sister was there working a table along with lots of personal friends and coworkers. Standing out front all I could think was dear lord just let us get 50 registered today please! I never ask you for much, I always ask on behalf of someone else, but please help me out today with at least 50 people joining this registry.Then at around 11 am it happened. Cars came in slowly at first then a little more and suddenly we were inundated with people from everywhere! Shaking hands and hugging people I knew, didn’t know, friends, family and acquaintances! They just kept coming and coming and it was, well it was, AWESOME!!!!

Today a community pulled together for one of its own and that person just so happened to be the woman I love, my best friend, my wife. Talking with a dear friend it came to discussion how amazing it is, we all live together, go about our daily routines, passing each other paths without so much as recognition at times and yet when one is in trouble we all head the call. We all band together to protect one of our own and even if you don’t know that person, you may be friends or family with someone who does and that’s good enough for you. Now they are one of your own as well.

Today talking with all the wonderful people of this town it amazed me how true that last statement really was, as through these conversations I knew people in passing. As friends of friends, as family members of other family members, and in realizing this just how connected we all really have become. A community. Six hours came and went in a flash. It was astounding. Reporting home to my wife who was surrounded by close family and friends, she sat in awe of all the fuss. But to me it makes perfect sense. We all touch someone in our lives, some of us are fortunate to touch many people either in spirit or through deed. Jacy is one of those people, she shines brightly on all in her life. She brings a joy and happiness to those around her that is hard to deny. She cares about everyone, is passionate about her students, and loves her family. She is Jacy.

Today I saw the true meaning of community. Today we may have saved someones life. Today I felt love and compassion on a whole new scale. Today I came home humbled by it all. Today I thanked God for answering my prayers.

Today, is the start of tomorrow. Thank you all for giving me that…

Tonight I will sleep quietly next to my sweet wife, wrapped in the warmth of every single hug I received,

Today.

Still kicking cancers ass one cell at a time!

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 cont….

November 26, 2013 theycallmebettyLeave a comment

(Sorry everyone I am a little exhausted today and my writing shows)

The next day brought a tsunami of nurses and doctors. They filled into Jacy’s room, each with a different explanation, each with an intended purpose, each wanting to ensure we knew what was happening and why. They were fast, they were thorough, they came and went just as quickly. They were also some of the nicest people I have ever met. I mean seriously generous, kind-hearted, nice people.

You know what I am talking about, the kind of people you see in a small town where everyone knows everyone and when someone is down they all rally behind that person with empathy, generosity and love. Wait that sounds familiar? Nawww that doesn’t happen anymore these days. (sarcasm)

Anyways the first nurses we became acquainted with were JoAnne and Wayne. Wayne is a 40 year veteran in the nursing profession and it shows right away. His knowledge and approach with patients is mesmerizing. This man could teach a very successful class on customer service. JoAnn is hilarious and does her absolute best to keep us in good spirits from the moment she strolls through the door. She is absolutely adorable, her and Jacy hit it off right away, a new friendship is born.

The morning is filled with more needle pokes, more blood drawn, and an echocardiogram of Jacy’s heart. This was needed to ensure her heart was healthy enough for the Chemo meds as they are extremely toxic to heart muscle. So a baseline for cardiac output is measured, tolerances devised and the green light given for treatment.

Dr. Truong comes in to discuss possibilities and probabilities in regards to Jacy’s treatment of chemotherapy. We sit together in awe as numbers, types, statistics, age, medicines and death are all thoroughly covered. In the end Dr. Truong tells us it doesn’t matter what current statistics are, what matters is you the individual. You, your brain and your body will determine the outcome of this procedure. She emphasizes a positive attitude will get Jacy along way during treatment. She looks up to see Jacy smiling her patented big radiant smile and instantly knows attitude isn’t going to be a problem.

Within minutes the I.V. stand becomes loaded with several cocktail mixtures for inter venous consumption. Lines go in, Jacy lays back and before long my lovely wife, who three days ago thought all was right with world is now a Cancer patient in treatment with chemotherapy.

We spent the better part of the afternoon talking about the last ten years together, where we came from and where we hoped to be when we retired. Promises made to slow life down when we walk out of this hospital, but I know deep inside that isn’t going to happen. It takes a lot to hold down two jobs, run a ranch and save little puppies from death (Coopers Good Dog Rescue) then raise four children while participating in kids sports, 4-H, FFA, high school rodeo and well good old life in general. Truth be told it has created memories we will cherish together always. We talked about everything under the sun but do you know what we didn’t talk about? Letting cancer win! Thats right, positive attitude all the way! Every one of our conversations about the future had the two of us in it, no death, no separation, only triumph and togetherness. Our conversation started winding down, we made fun of cancer a few more times, even held each other and cried one or two more times. Then we sat back and began to wait. For what I did not know, but we waited…

While all this was happening, behind the scenes at home an army was taking shape. A collage of human spirit weaving its way slowly together getting stronger and stronger by the minute. It was amazing, I had received a few phone calls from loved ones and very close friends within minutes of Jacy announcing her condition of Facebook. But those few phone calls started a ball rolling that like a snowball tossed gently down a fresh snow covered hill, grew larger while gathering size and speed until it would become an avalanche of love and support so great that people wanted to be consumed by its force and power. Humbling to the say the least.

Night rolled into day and I awoke, rolling off the couch from hell to watch the nurses change out a fluid bag on my wife’s I.V. stand. She awoke feeling fine, just a little tired and still ready to kick cancers ass!

By 11 the Dr. Truong had re-emerged bringing her infectious smile to our room. We had a very nice conversation where she explained the importance of a spinal tap on Jacy to retrieve spinal fluid. The Spinal fluid would be tested to ensure no cancer had spread to jacy’s brain (this of course would be devastating) or was trapped within the spinal column. If so this would lead to a chemo treatment directly into the spinal column itself. No one wanted that…

Jacy is still bouncing off the walls with positive attitude and posting pics of herself on Facebook. This is good for her, as the higher her spirits for a longer period of time the better mental state she will be in when the chemotherapy really does make her sick. I sit patiently by her side, knowing that moment of nausea will come soon. She has three “pushes” of high does chemo drugs to go through and the first is tonight.

At 5 pm the nurses assemble for the first “push”, they are covered in gowns and face masks, it looks as though this process should be a scary thing not a positive one. It lasts for 30 minutes, is monitored by nurses for any abnormalities within jacy’s vital signs and the nurses kick me out of the room when it happens.

Walking the halls I am sick to my stomach! I still can’t believe this happening to us! But I promised to be positive, so here goes. I am positive we are going to beat this! I am positive my wife is going to be fine. I am positive I will love this woman to the very end! I am positive I can handle all of this for myself, my wife, my family, and my friends. I am positive we are going to kick cancers ass…

And it all starts right now!

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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