What do I say?

What do I say?

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

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

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

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

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

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

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

I know what love is; it is my wife.

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

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

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

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

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

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

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

So what do I say?……

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

What do I say?………

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

What do I say?

I say, I love you….

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

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

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

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

Thank you for that….   Betty.

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And away they go!

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

Buckle up Buttercup!

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

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

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

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

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

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

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

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

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

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

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

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

stay positiive

How was your day?

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

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

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

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

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

(Heavy, heavy sobbing)

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

Tears fill my eyes.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Feel the warmth

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

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

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

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

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

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

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

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

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

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

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

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

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

hobbes

How “we” are doing.

Unknown-2This arduous journey we are on is filled with inevitable highs and lows. People are always asking how “we” are doing and although for the most part I am fine; I cannot hide my feelings of attrition while aimlessly wondering through each and every day. Work is merely a blessed escape, a place to hide from reality as we move hour by hour towards resolve. Home leaves me running around trying to appease everyone while getting absolutely nothing done in the process. The carnage left behind I fear to be my children. Although showing no signs of weakness along with praising my personal efforts whenever we check in at night, I often ponder what their reflection of this moment will become years from now. Will their recollections be filled with bravery, honesty, and fondness for a valiant effort put forth by many loving, caring friends and family? A summer filled with day trips, adventures and playtime accompanied by freedom from parental rule? Or will they only remember a summer where no mother or father were present a majority of the time? Night after night of no one to kiss them goodnight, tell them how very proud we were of any small accomplishment casually swept under the rug through absence? I wonder, my heart hurts, and panic grips my thoughts as I have no control over any situation they may find themselves. Or maybe I am just thinking too much?

My oldest is doing a great job, the kids are constantly singing the praises of super, duper big brother Cody; it does bring me some comfort in the man he has become. But day after day I smile, I hold strong, and act like nothing is happening for the only ability I hold to express any feelings resonates within the stroke of a key. It is probably nothing, my uncontrolled daydreams of disaster happening without me present, strung together from the woven fabric of a long storied career, centered on assisting others during disaster. For my spinning, crazy mind the boogie man hides around every corner waiting to spring into action. He prays on the weak and unattended, and although my oldest is an adult with more than adequate skills to handle any trouble that may arise, through my eyes he is ten years old with a squeaky voice asking for my help and I am not there.

I miss my wife, I miss my friend, and I even miss her being terse with me for something stupid that has sprung callously from my mouth. (which if you know me is frequent)  I miss her kiss. Leukemia sucks. It has been 4 weeks since I have been allowed to kiss my wife. (Definitely been taking that for granted!) 4 weeks! Now don’t get jealous but truth be told, one kiss from my wife can erase a month’s worth of fret, anger or sorrow. I know, you’re jealous anyways, you just couldn’t help yourself huh? Its ok, but she is mine, so get your own!

That is how I am doing. That is what’s spinning around in my brain on a minute by minute basis.

The good news is how Jacy is doing? Jacy is slowly getting better!! Her white cell count is stabilizing, the constant fevers of 101-104 are now holding steady 99-101 (yes that’s a good thing)! She is still very uncomfortable from added fluids in her cells. This comes from bag after bag of fluids added to help with a bleeding bladder! So there is roughly 20-30 pounds of extra water weight on her at any given time. This added fluid is extremely uncomfortable and at times painful. Jacy is still having problems with severe nerve pain to the point a physical therapy team has begun working with her on a daily basis. Being the stubborn Cuban woman she is, nothing is keeping her from trying to walk the entire circumference of the quad. Chairs strategically placed around its outer perimeter have assisted her with this feat! She called me yesterday to announce she made her first full lap! It hurt like hell, she struggled a bit, but she made it and felt like she finished a marathon! Her lips and throat have been saturated with sores and as of yesterday most of her bottom lips inner skin had sloughed away, leaving raw exposed nerves. This is all part of recovery as the white cells are learning what is foreign, foe or friend within its new host.

Word on the street is if she loses the temperature spikes, the bladder stops bleeding and she is able to walk a little more consistently without so much pain, they will turn her loose to outpatient care. Outpatient care requires living within 30 minutes of Stanford in case of a recovery reversal such as high fever, difficulty breathing, an infection of any kind or onset of GVHD (Graft Versus Host Disease). This of course means she moves into her dad’s apartment close to Stanford where her family will assist with her recovery. It also means once school is in session our family will make the journey every weekend to spend much needed time with her.

When I spoke with her today her spirits were high! She feels as though she is finally turning the corner and is looking forward to making it out of the hospital signifying the next step in recovery.

Thank you all for the continued prayers, support and love. The Franceschi clan is very grateful for each and every one of you!

May God bless you all, as together we watch my awesome wife Kick Cancers Ass one more time!

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Promises

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

And you would be correct, for they are…

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

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

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

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

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

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

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

I am praying all the time….

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

I promise……….

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The final countdown

Kaiser Hospital is the happening place! Anybody who is anybody goes there and only the most beautiful of people roam these hallowed halls of floor number five. Checking in today felt so normal, familiar like one feels when putting on their pants. Pulling up to the front, participation for all aspects of moving into Chez’ Kaiser no longer requires attention from both parties. Previous trips required my service in moving luggage, assisting with check in and holding her hand all the way into what ever guest suite we had been assigned. But no more! Unfortunately or fortunately depending on how your perception clarifies this murky glass, my role has been downgraded to nothing more than that of husband dropping wife off for work status. Not that I am any less important, it just seems as though our journey has over time become routine.

Once inside her luxury suite, smiles laughter and hugs are had by all who grace this threshold. It really is like coming home from an extended journey. That is if home has an adjustable bed, vinyl curtains, bleached floors, IV stand that looks like R2D2’s anorexic cousin, a really small TV with a channel solely devoted to showing some random nature picture luring your delirious mind into believing one day you will get outside again. One cannot discount the three square meals a day, nutritionally balanced to meet your every carbohydrate need. Yepper it is just like home!

I know I have said this before but I feel the importance to reiterate just how much I love the staff here at Kaiser Vallejo! They are some of the warmest, kindest human beings in medicine! It is obvious it takes a special person to handle cancer patients, let alone continue treating each and every patient as though they are family.  I have never feared leaving my wife here, not one time! My wife means everything to me and you cant put a price on that type of mental security.

Dr. Truong arrived a few minutes after Jacy settled in, it was great to see her! Dr. Truong has a genuine smile, a kind heart and has been the largest advocate for my wifes care. She also leaves us feeling like we are part of her family. Jacy and I are always super happy to see her; she gives us straight facts, tells us what path we are on, and listens to any concerns we might have with a kind ear.  Jacy has felt blessed from the moment we connected with Dr. Truong and that has been a blessing as well. Nothing beats having the utmost confidence in your doctor and the care you are receiving!

After a brief rundown from doc, it finally hit home for us both this is indeed the final countdown! 5-7 days of chemo with Kaiser, a couple weeks at home with a few blood transfusions thrown in for good measure, then on June 22 it is off to Stanford for another bone marrow draw, chemotherapy and finally the big day! July 2nd, is bone marrow transplant day! Many more trips to the hospital, days with allergic reactions, blood loss, crazy cell counts, weakness, weight loss, hair loss, hives, nausea, weakness and anxiety have all led to this final countdown of healing and redemption!!

Becoming cured from this dreadful disease is going to be an ongoing uphill climb! 4 months of separation from the ones she loves, four months of crazy stuff that is going to happen to her both mentally and physically!  Through all of this there is one thing I know for sure; if anybody can beat this horrible disease it is my stubborn, gritty, ornery beautiful wife!

So please say a prayer, hold a kind thought, it is definitely going to be a long screwy, jigsaw puzzle of a summer and we could all use the good mojo you can muster to get us through!!

more to come…..

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A trip to Stanfords Cancer Institute

Sitting in traffic wondering how anybody could possibly live in the Bay Area without owning an urban assault vehicle reminiscent of something from Mad Maxx for redemption cast upon rude idiotic drivers I will never know! While commuters are frustratingly obnoxious my focus channels instead towards taking that initial step into Stanford’s Cancer institute.

It will be emotional for sure, Jacy is nervously anticipating our meeting with the Bone marrow Transplant team. There are so many unknowns in regards to facilities, rooms, and living arrangements for both pre and post-transplant. What will her doctor be like? How many people will be involved in this process? Has anyone determined if her brother is a match? If he is not, what is the prognosis for a match and how long until we know? What is or is not covered under our insurance since we are leaving the Kaiser system? What is the real number in terms of time away from work?

I am nervous too. It has been a very long time since I set foot in this place, I hoped to never come back here again so I am praying for the best. Will I be strong enough to keep her spirits up if we hear things we don’t like? Do I have the ability to keep quiet and listen, truly listen to all the information while reading my wife’s responses and emotions ensuring she gets the most out of this meeting while feeling my support?

Once on campus it’s clear this will be no easy arrival, there are multiple construction projects in various stages of completion. No parking what so ever, and traffic complete with traffic monitors moving us slowly from one place to another. Finally after being directed from one street to the next we come upon the front of the Cancer Institute. Carefully pulling up I let Jacy get out to check in since we are border line late thanks to 35 minutes at the Bay bridge toll plaza. As I circle around I find the front entrance is for valet parking. Yep that’s right valet parking! This place looks more like an entrance to a 5 star hotel complete with black jacket, bow tie wearing servants. Turning the car over and receiving my return ticket, in my best dry humor tone I let the valet know to take it easy in the corners, not many can handle a car like ours and temptation is great! He nods, smiles, says thank you and slowly pulls away in our Honda Odyssey. Pretty sure he had no idea what I was talking about or mumbled asshole as he drove away. Either way good show old boy, for keeping that beaming professional appearance.

Walking inside the Cancer Institute my impression has not changed. Glass, marble, wood, brass, and staff members dressed professionally. It is a sight to behold. Making my way down to our appointment area I also can’t help but notice how busy it is! This place is vibrating with expectations, anticipation, and exasperation; seriously this place is buzzing with intensity! Cancer has become a business for sure, and business is booming! Meeting up with my wife, we are called into an exam room where we are introduced to one of Stanford’s social workers. She is a doll, who asks us questions covering our lives at home, where we live, how we live, how many children we have, is there a solid support system in place, do we have any animals, what kind of animals, what do we know about transplants? Jacy and I have both done our best to be informed on all aspects of Leukemia and it showed during our interview.

Dr. Muffly walked in and introduced herself. We both liked her immediately! She is very kind, warm and friendly. To be honest, not what I expected, I don’t know why, there is no real reason why and even as I am typing this it bothers me that my predisposed expectation was somewhat skewed. Needless to say we had a wonderful meeting. When we asked about jacys brother being a match, she picked up the phone without hesitation and called her assistant who after a few seconds of looking through data informed us he was not. My heart sank a bit, but Dr. Muffly insured us it was going to fine. Only 25% of full siblings are an actual match anyways, so the odds were already against us.

We talked about Jacy’s form of Leukemia, what it meant for the short and long term. We discussed the process, where I also learned that actual bone marrow is only used in specific cases. The latest advancements are centered on Stem-Cells through an Allogenic Transplantation.

“In an Allogenic Transplantation, a person’s stem cells are replaced with new, healthy stem cells obtained from a donor or from donated umbilical cord blood. Chemotherapy or a combination of chemotherapy and radiation therapy is first given to eradicate cancer cells, to suppress the patient’s immune system, or both. The new stem cells are then infused into the patient’s bloodstream through an intravenous catheter, in a procedure that is similar to a blood transfusion.”

Very, very cool stuff! The donor is given a shot to hyper activate their system, creating active stem cells released from the donors marrow. After a week to ten days that blood is collected from the donor and shipped straight to its recipient. No more pain or discomfort from the actual bone marrow procedure. Once the infusion is complete the patient is kept for another five days in the hospital then seen on an outpatient status. Here is the caveat. Once in outpatient status the patient cannot live more than an hour away. We live two hours away so home is a no go. The hospital provides housing both near its campus and in San Jose. Jacy needs to be close for monitoring. A fever, severe nausea, or what they refer too as graft vs host disease are all issues to be diligent through observation.

“Graft versus host disease (GVHD) is a common complication following an allogenic tissue transplant. It is commonly associated with stem cell or bone marrow transplants but the term also applies to other forms of tissue graft. Immune cells (white blood cells) in the tissue (the graft) recognize the recipient (the host) as “foreign”. The transplanted immune cells then attack the host’s body cells. GVHD can also occur after a blood transfusion if the blood products have not been irradiated or treated with an approved pathogen reduction system.”

Any signs of these and she needs to come right in, day or night. The total time frame for being away from home is 3 months.

Let that sink in for a moment. Your whole world is feeling out of control, statistics flying left and right, in the hospital then out of the hospital in combination with a gigantic fear all will fail leaving you to die. You are told you cannot be home with your children, family, for three months. It is easy to be reassuring, it is easy to scoff and ramble off witty lines like: it’s only a blip in time, you will get through this, be back home and never look back! But when it is you, trying to wrap your mind around missing more of your children’s activities, seeing and interacting with our farm and everything you know. It is a tough to understand, which leads to the invariable; why me?

When she comes home, she now knows, she will not be able to work for a year and even though she is home, no animals (dogs exempt) for up to six months. During this time (from graft to home) she will wear what appears as Darth Vaders entry level mask. This HEPA or High Efficiency Particulate Respirator should keep all viruses and organisms from entering her body. She must also have nothing but fresh food prepared by her caretaker for every meal to ensure no contamination. Wait! I said caretaker! That’s right! She will need a 24 hour a day caretaker, someone preferably a family member to monitor her, feed her, and drive her (yep banned from driving for 4 months) to all her appointments.

This was quite a bit of information and even though we knew most of this from doing our homework, it was more than we were really prepared to acknowledge.

The kicker through it all? The one thing that stuck with me? Was those damn statistics again! I have always said; Statistics are to a mathematician what a lamppost is to a drunk. Just something to lean on. But for some reason hearing straight from the doctor’s mouth, it is a 50/50 chance for recovery. Hit me really hard. I never let it show, but like a sock in the gut is just kind of took away my air and left me sitting there for a moment. I know there are millions of factors, (read my last blog) I know my wife is a fighter, I know all the positives one can spew, but until you have sat there, focused on the words coming from your doctors mouth it just isn’t the same.

It was a long painful car ride home. She cried, we held hands, I did my very best to comfort this woman I love. The prognosis still remains great! But nothing hurts more than hearing your wife tell you she feels as though she has been handed a death sentence. She has a right to feel that way, she has a right to be sad, and she has a right to be angry at everything. This is something I cannot fix, this is something we need to have faith over. This is something that will strengthen our marriage even more. She will come away from this in remission. I just know it.

This morning we received some great news! There are four donors that are a match! All four have been contacted for further blood work! Our first step to winning this battle, the hardest step that so many never get to take! We have a match! I urge you, any of you to please register with Be the Match! You may have the honor of saving a life. In this case someone did, and it will save my wife’s life!

She also called me this morning to tell me she is back in the zone! All positive thoughts from here forward! A little time in church did a woman of faith wonders!

God Bless everyone for the continued support.

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Pythagorean Theorem=Boobs????

Over the years my wife and I have spent countless hours helping our children to succeed through both word and deed.

It takes no shortage of creativity, knowledge, a sense of humor and occasionally some good old-fashioned ass kicking to solidly seat things into our children’s thick know it all skulls.

A week ago a new low had been reached in our household, the bottom if you will. All was going reasonably well, homework becoming finalized before an upcoming work week, and yes I can hear a collaborative parental moan now: why wasn’t the homework done Friday night? No excuses, no answer other than it is just the way we roll here at the BCR (Black Cloud Ranch) if it isn’t last minute well then it wasn’t worth doing!

One of our boys, oh hell why beat around the bush; it was the fourteen year old! Anyways he just doesn’t seem to grasp the importance of Algebra! Seriously Algebra! Algebra is the very basis for all math we will NEVER EVER USE AGAIN IN OUR ENTIRE LIVES!!! It might as well be stinking cursive! Who the bloody hell uses cursive or ever thought cursive was so freaking imperative? Isn’t Cursive like the Beta video of language expression? Oh sure I have seen many hybrid versions, you know a mix of block lettering, plain print and cursive. But really in the end it is as useful as a chocolate tea-pot!

Algebra was the very bane of my existence as a freshman in high school, and it appears to be a genetic learning disorder! Yet Jake has one glaring ace in his pocket for which he refuses to take advantage that I never had at my disposal! His mother teaches math! I know right? Mom teaches math! HELLLLOOOOOOO????? You say you don’t understand math, ask your mother politely for assistance and well, 1+1=uh an easy freaking A! But no, Jake stands before his mother, arms crossed as though he was in the center of a Law and Order episode awaiting his lawyer! This boy, this hard-headed, rodeo driven boy, has been given a free ride for way too long based upon his dimples and charm, yet at home his mother and I see the poop thrower from three years of age. His dimples purchase no currency at the parental store of effort and trust. Mom continues teaching, Jake continues fighting the process. My teeth are grinding and my inner voice hears our beloved dentist God Bless her soul telling me to let it go before irreparable damage is done!

Finally after many witty and not so witty exchanges take place mom has hit the wall, this lad has more excuses for why he cannot learn the Pythagorean Theorem than a desert has sand! Who doesn’t understand the relation of lengths in three sides of any right triangle! Right? RIGHT! Ah Duh!!!! (Ok truth be told I didn’t know what it was either until this fight, but hey enough about my adult ignorance!) Yet a no learning wall is up, affixed, complete with eye rolls, heavy sighs, and the occasional slack-jawed look of stupidity.

This entire process of enlightenment and denial was finally broken when my wife, teacher of equations and mentor with wit, creator of interesting theory and conclusions nonchalantly threw out a reference as to the design of her latest mathematical problem looking a tad bit like boobs! Yes you heard me right BOOBS! Brought forward in that casual oh look what I accidentally drew they resemble BOOBS, kinda way! Every teen boys dream! Men and women alike can agree that BOOBS are pretty freaking cool! Right? Hey I won’t lie, I looked! She said BOOBS for Christ’s sake!!! But instead of a chuckle, juvenile laugh or smirk our sense of humors, no matter how imperfect for the moment (seemingly appropriate I might add) were greeted with teenage loaded snide sarcasm and cynicism!

NICE! Now I am not referencing “NICE” in relation too, eyebrows wiggling, crooked grin, hey there look at that or creepy stalker nice; oh nooooo. This was a thoroughly disgusted, grossed out, want to vomit because my mom referenced a girls private parts “nice”.

What the hell! Its boob’s son, no matter how big or small all girls have them! Even some men! How in the hell can you treat it as though it is a dirty word? BOOOOOOOBBBBBSSSSSSS! See rolls off the tongue! Remember when we had the sex education talk and we made you say PENIS, PENIS, PENIS- VAGINA, VAGINA, VAGINA? You thought that was a freaking riot! Red cheeks and all! So what gives? Wait is this because you think we are automatically referring to you moms boobs? Well heaven forbid your mom, a WOMAN has boobs! Or is it because you cannot stand looking at boobs in front of your mom? Well then we have done something wrong if you are ashamed of the female body and all its glorious shapes, curves and dimensions in front of another woman! What is it? No son of mine is going to ramble on with some form of weird embarrassment over a hand drawn set of circles that look conspicuously enough like a set of boobs! (+)(+)

Then it dawned on us, he saw two circles, we saw two circles, he still remained steadfast in his attempt to thwart any assistance given by his mother, his mother remained steadfast in breaking down that wall. Hence forth two circles that once were nothing more than an equal equation in a math problem became the nucleus for an excuse. By acting as though we had stained his little eyes, burned an unwanted image into his brain, leaving him to die upon the sword of our humor amidst an assumed embarrassment. He believed homework time would be over, a byproduct of our apologies for such inappropriate behavior on our parts. Crying at the table, head in our hands, relished to failure as parents for our poor lack of judgment, he could leave the table thusly going about his evening bypassing another painful night of math while feeling as though he finally got the upper hand!

Hmmmm in retrospect, quick thinking young grasshopper! I am impressed at how fast you grabbed ahold of an opportunity to exploit a situation hoping for instant benefit and gratification… In many instances this quick thinking may have brought forward a prosperous outcome. This would not be one of them!

BOOBS, BOOBS, BOOBS (+)(+) Do you see them???? BOOBS, BOOBS, BOOBS!!!!!

Now do your damn homework!