Random thoughts on life and Leukemia

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Last night while gazing upon the stars at 1 am after our 5th medical response in a row my brain began reflecting upon life, its crazy highs and sock you in the gut lows. In a matter of 40 minutes myself and our crew had lent assistance to a wide generational swath of our local society.

From devastating self-destruction both mentally and through chemical intervention to an actual emergency need in conjunction with a health care system abused by those neither willing nor able to understand its legal ramifications, the resources lost, nor the world that actually doesn’t revolve around them personally. A true sampling of consensus within a short period of time.

Becoming judgmental is an easy undertaking, fighting the urge to prejudge individuals upon first encounter is hard. Being a fireman the communities trust is put in our hands to always do the right thing. See people for who they are not what they have become. We are allowed glimpses of people’s lives that would otherwise go unnoticed. That is a large responsibility. Some days it weighs heavier than others on my heart, as my eyes witness these revolving cross sections of our society I go home upset or unhappy with what I have seen. Thus the judgmental aspect forms and memories that cannot be erased etch themselves into my psyche permanently  like a scar for all to see, left for me to pick at from time to time for no other reason than because it exists.

Staring into the nights sky, pondering what it all means, fogging up my brain. Reliving experiences from my life, candid moments, snap shots and like a Grisham novel this story is all sewn together with a fabric of revelation. Every moment finding a place as to why. Why it happened, when it happened and that it happened to me. There is a meaning and the meaning determines not just who I am but WHAT I am or have become. The people in my life I hurt, loved, helped, shared experiences with and what I learned from each and every individual who has crossed my path, set eyes upon my craggy face.

Shaking my head as if my brain was an etch a sketch hoping to erase an unfinished drawing, I can’t lose this feeling that all is not enough.  There is more life to be lived,  we are trapped in a stereotype of how life should be lived and for the most part succeed out of learned habit. But what if there was more? We have one life to live, we are not guaranteed any days here on this earth, trust me I have held the hands of many who were cheated, watching those last moments fade away in their eyes, lives unfulfilled, potential disappeared, erased forever.

Yet the world still turns, it feels no repercussion from human losses. Sun rise, sun set, society still moves, people still awaken, babies are born, buildings erected, mountains moved and society trudges on. Eventually who you are or were, is destined to become a faint memory or forgotten. It is life and life goes on.

I live a life of fear. Fear that I will never be good enough, fear that my children may perish before me, to be forgotten before they had a chance to become something, anything that leaves a mark no matter how small upon this world.  Fear that my wife may lose this battle with Leukemia at some point, leaving sadness and despair to rage within our family. Fear that I will perish before I find what this longing is deep within my heart that whispers; no screams at me there is something more. A mark, a substantial mark that I am supposed to leave upon this earth. Complete narcissistic view I know, yet it lingers deep within my soul. Maybe I am already leaving that mark and just don’t see my hand to spite my face? Fear that she (my wife) will know the pain of losing me, carrying an ache, sorrow and agony with her for the rest of her days.  Fear.

So I stare up at the stars and I wonder why? Why do I feel this way? Why cant I be happy with the here and now. Why I worry about how much time I have left or lack there of? I wonder how I can be better, a better father, husband and friend, a better co-worker, I wonder why?

Remember those days when you felt as though you had the world by the balls? There was nothing to stand in your way, no mountain you couldn’t climb, no one was going to say no to you! Do you remember? I do.

If you don’t understand the feeling I am referring too, just look at your child. Not your self-absorbed teen ager; your child. 1-9 years of age. Before society, television and friends ruin their ability to think on their own, be creative beyond our walled off perceptions. Give a child an adult sized problem, one requiring and answer and you will see imagination, inspiration, out of the box thinking and a confidence just waiting to be tapped. But as they grow older that ability goes away through structure, through habits neither right or wrong learned from observing ones elders. That feeling you had as a kid of being able to daydream all your problems away. To look deep into a problem and come up with the craziest most unorthodox suggestion known to man. To be confident.

That is the way I feel about Leukemia in my life. I don’t have Leukemia, but when my wife suffers, I suffer, when she hears news both good or bad, my emotions grow raw with glee or anger. I refuse to hear the word no. There has to be a yes to this struggle. I refuse to believe that my wife wont beat this disease. I refuse to listen to statistics and the medical dribble that often accompanies those numbers. And to date she is winning, we can see the finish line and victory looks great!

I feel as though my wife has the world by the balls! That she has another opportunity, showing the world she is unbreakable. That feeling has inspired me, left me in awe of her positive attitude, her out of the box thinking. She unknowingly has allowed me to reconnect with my inner child. There are no problems that cannot be tackled without imagination. She has left me finding the positive, loving all who surround me, laughing just a little bit harder, saying thank you a whole lot more and remembering that life is a gift to be cherished. I kiss her on the head every night while she sleeps, the smell of her skin soothing my soul. She has and is all I will ever need.

And so I am left staring at the stars, at one in the morning, wondering if there is or could there ever be, more………

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The Face of Leukemia (December 18, 2013)

 

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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..

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The Faces of Leukemia. Today

 

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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!photo 3

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.photo 1

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!

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The Face of Leukemia (December 11, 2013)

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And so another aspect of this journey begins, a long and winding road filled with new highs and lows. The first hurdle has been crossed. The hospital is temporarily behind us as we will head back towards it in a month. Now begins a fight of great proportions.  Battling her compromised immune system.

4,500-10,000 white blood cells per micro-liter (mcL).

That is what we are hoping to achieve over the next week.  It doesn’t sound like much but in the grand scheme of things it’s the difference between life and death, staying home and heading back to the hospital. Walking then running, being surrounded by family and friends ar remaining in isolation.

Jacy’s white blood cell count was obliterated, dropped to zero by chemotherapy. This was of course designed as such to decimate the mutated cancerous “blasts” of immature cells invading her system, slowly eliminating her ability to fight infection, damaging other cells and choking her system with further useless cells.

Before she was able to come home her white cell count needed to rise above 800 and for days we would get excited as it rose to 600 then dropped to nothing with an onset of fever and night sweats.  Jacy’s platelet count would drop meaning her red cells were disappearing and her body was having trouble converting or carrying oxygen within her system.  Chemotherapy as I have said before destroys all cells.  You must kill them all so new ones can grow and flourish.  Or as the doctor put it, be brought as close to death as one can get before being allowed to live. So everyday would start out with a new blood transfusion, platelets and a lot of rest.

Along with all this cellular bombardment comes the neupogen shots. These shots are started after white blood cells slowly start production. What is neupogen?

Filgrastim- (Neupogen) is a granulocyte colony-stimulating factor (G-CSF) analog used to stimulate the proliferation and differentiation of granulocytes.[1] It is produced by recombinant DNA technology. The gene for human granulocyte colony-stimulating factor is inserted into the genetic material of Escherichia coli. The G-CSF then produced by E. coli is different from G-CSF naturally made in humans.
Filgrastim is marketed under several brand names, including Neupogen (Amgen), Imumax (Abbott Laboratories), Grafeel (Dr. Reddy’s Laboratories), Neukine (Intas Biopharmaceuticals), Emgrast (Emcure Pharmaceuticals), Religrast (Reliance Life Sciences), Zarzio (Sandoz), Nufil (Biocon) and others.
Apricus Biosciences is currently developing and testing a product under the brand name Nupen which can deliver filgrastim through the skin to improve post-chemotherapy recovery of neutrophil counts.

Ok so that was the technical doctor jargon, a pharmacists evening read. The down and dirty is Neupogen jump starts your system, telling it to make white blood cells and make them now!!

Neupogen is given through subcutaneous shots, started in the hospital and once we achieved a white cell bench mark the responsibility has been passed to me for in home treatment.  For all the greatness that is Neupogen there are also a few side effects for Jacy to deal with and they are;

The most commonly observed adverse effect is mild-to-moderate bone pain after repeated administration and local skin reactions at the site of injection.[3] Other observed adverse effects include serious allergic reactions (including a rash over the whole body, shortness of breath, wheezing, dizziness, swelling around the mouth or eyes, fast pulse, and sweating), ruptured spleen (sometimes resulting in death), alveolar hemorrhage, acute respiratory distress syndrome, and hemoptysis.[3] Severe sickle cell crises, in some cases resulting in death, have been associated with the use of filgrastim in patients with sickle cell disorders.[4]

The bone pain is killing her! It hurts to lay down, it hurts to stand up, she explained it to me as such, “my bones feel like they are exploding”. Can you imagine feeling as though your bones were exploding? I can’t.

So we are finally home and the last 48 hours have been an adjustment. Jacy is still exhausted, but very, very happy to be in her home. She is sleeping a lot (which is good), her bones are exploding inside, fatigue comes from walking downstairs (although we did journey outside yesterday which was awesome). The bed is soaked from night sweats and she awakes at 3 am unable to return in slumber. Jacy is also coming to terms that her life in the forseeable future will not be the same. This is going to be the hardest for her. Not being able to ride her horses or walk outside to play with the dogs is bringing much strain to the newest face of Leukemia. The thought of not being able to teach in her classroom this year is devastating. But she will prevail.  She is an incredibly strong woman who will triumph over this bastard known as Leukemia.

Today I held her as she cried over a current life lost, the realization of a unkown future, and the feeling of utter helplessness. I have always considered myself a strong person, but until you have faced a battle of this magnitude, become a true foundation for the person you love. You realize everything you have done in the past pales in comparison. Then you cry, not in front of her, but alone, so that foundation remains steadfast. My tears of sadness shedding her pain not mine. Throwing those feelings away, never to be seen or felt again, because we can only live for the positive.

Remission is a word the both of us are longing to hear. A word associated with freedom from the grip cancer/Leukemia has upon a soul.  We will walk every step together towards Remission, holding hands, moving slowly until we arrive.

Still kicking cancers ass, one cell at a time.

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The Face of Leukemia (December 2, 2013)

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Another couple of days spent sitting patiently watching her sleep. For some this could become tiresome or even boring, but not for me. Time trudges on, as the thought of her waking to speak with me, even for just a little while weighs heavy with anticipation!  A second of lucidity, a moment, a glance, the chance to press her cheek against mine long enough to feel close again.

Through all of this, I am reminded that as her husband it’s my job to care for this woman.  It is an honor to ensure she has all she needs and it’s my privilege to do so. But none of that would be as easy as it sounds if it weren’t for all the wonderful people who continue to support our family back home. To continually be humbled by the kindness, care, love and empathy shown to us by our friends, co-workers, acquaintances and strangers is overwhelming to say the least. But I am and I thank you all..

Saturday while staring at the east Kaiser wall an epiphany overcame me! So after a little one on one discussion, today with Jacy’s help the two of us acted upon that revelation.

This morning my wife woke up, shuffled her way into a shower, did her hair along with a little make-up. Now this of course took all the energy saved up from a solid nights rest that one participating in chemotherapy could muster, but that did not deter her from participating in this master scheme. A phone call, some texting, our kids taken to school without the slightest knowledge (because loose lips sink ships), and I stealthily rolled into the parking lot of Dixon Montessori Charter School at 0800.

At 0815 I cleared the threshold of Ms. Jacy’s classroom with nothing more than a smile, a cell phone and one iPad mini in hand.  The students were gathered together and a simple question and answer period began. You see Ms. Jacy (as most already know from reading my blog) was hauled off to the hospital right after returning home for her lunch break on the Wednesday before the Thanksgiving holiday. Although her students knew what was happening through reports on Thursday and Friday, they had not seen or spoken with the teacher they have all grown to love since.

That was about to change

Jacy’s students know me either as Mr. Jacy or Firefighter James, Ms. Jacy’s husband. So not a lot of time was wasted with useless questioning about my presence. The kids were excited to see me and to hear the latest news, especially in person. But when I held up the iPad and explained my plan the place went nuts!

Now it took me a few tries as I am not the most advanced person immersed in the world of technology. But for the rest of my life I will never forget the sounds of joy that came from each and every student when I turned the iPad around and there was Jacy’s smiling face looking back upon these students. They cheered and clapped and screamed HELLO! A few “bomb-diggities” were tossed about freely! It was fantastic.  She could see all of them and they could see her. I stood as still as I could holding the iPad up so she could take in the room and they could feel as though she was right there with all of them.  This woman truly loves these kids, all of them and they love her! She has spoken of them everyday since being incarcerated in the Kaiser hospital system.  She told them all about her stay, what was happening with her and how much she missed them! It was grand.

When we were finished,  looking down and saying goodbye into the iPad, she beamed at me with a look of happiness. The look on her face warmed my heart, but being the ever gruff man I am supposed to be I choked back a bit of mist in my eye, told her I would see her in a couple of hours and hit the end button.  Walking out of the classroom I knew Jacy had just received a good old-fashioned jolt of uplifting spirit! Something we all need from time to time, but more so for her right now.  Looking back, pretty sure some skipping was done on the way back to the car. Maybe even a selfie high-five?

This week is going to be a long one. There are more complications like the persistent headache that never goes away, continued fatigue and weakness, there are also some sporadic nosebleeds which have us worried just a bit.  She can’t bleed as there is no way for her blood to effectively clot, so she has been receiving blood and platelet transfusions.  Friday is D-Day and it cant come soon enough. It’s when we find out whether the first round of chemo did the trick! There is a long road ahead for us and every time we meet the doctor I feel as though it is preparation for the road to get longer. But never the less we will travel this road and hopefully meet some really wonderful people along the way. Hopefully we can spread the word about Leukemia and the effects it has on its victims, their families and friends.

The face of leukemia spares no one.  It belongs to your mother, your father, brother, sister, uncle, aunt, friend, acquaintance, and stranger.  The face of Leukemia can attach itself to any and every person in the human race and it does not discriminate. The face of leukemia cares not about your age because, old face, young face, the face of an infant it still survives. The face of leukemia doesn’t care about your  financial status, whether you vacation in the Hampton’s or live in a cardboard box under a bridge.  The face of leukemia is driven by this disease and the victims it inhabits therefore the face of leukemia is and always will be you.

Look in the mirror and ask yourself, what would I do if I had cancer? Who would I turn too. What questions would I ask? How would I react? Would I be ready to take cancer on and kick its ass without wavering?

I never asked myself those questions before now. But I have, and I am going to do everything in my power to make this a success for the woman I love. I am also going to tell everyone I can about leukemia, it effects, its signs and symptoms.  Then with a little luck, the power of positive thinking, prayer and the amazing skills associated with the many medical professionals we have encountered up to this point.

“The face of leukemia” will have a happy ending!

Because I love her face, and leukemia can’t have it anymore……

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The Face of Leukemia (Saturday Nov 30 2013)

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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.

  1. 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.
  2. Hot flashes- these aint no menopause, room is spinning type hot flashes either! These suckers come on like a mid summer Texas heat wave! 1450743_10202598276704690_1911443489_nThere isn’t enough water in Lake Tahoe to cool these bad boys down.
  3. 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.
  4. 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.
  5. 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.
  6. 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!
  7. 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.
  8. 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.
  9. 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 1456562_10202602458089222_1239893847_nbathroom but you! Wouldnt want your coin purse to glow in the dark you know.
  10. 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.
  11. 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!!

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The Face of Leukemia cont….

Unknown

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.

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The face of Leukemia

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!

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 images-18and 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.

images-21 images-19You 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 beerbefore 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 allimages-22 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 images-23its 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 images-24room! 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 DADUnknown-14

Brain Freeze

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….