Being Thankful-One year and seven days later

Another Thanksgiving has come and gone. I browsed briefly through many blogs this afternoon all touting the importance of being thankful and although I hate jumping on any blog bandwagon (Ferguson), I find that this evening in particular thankfulness shall abound and with good reason.

One year and seven days ago I stood in an arena, working a cute grey mare, getting her in shape to practice hard during the off-season. At 11:40 am my phone rang and through trembling voice my wife informed me she needed to head towards Vallejo Kaiser immediately or she might die.

Think about that for a moment.

A seemingly perfect day, slightly overcast and a little chilly brought to a screeching halt, turned upside down because of one single phone call and the words “I might die”. I have been dealt this card before so my recollection powers are incredibly strong and as I type the smell of cold wet sand and winter eucalyptus trees fill my senses. A moment captured forever deep within my brain.

One year and seven days ago our world changed forever. Although we try, it’s like the ghost in the closet, the elephant in the room, the fat lady who hasn’t sung yet. It is just there.

One year and seven days ago, I didn’t know if there was going to be a forever for her and me. I cried, hard, then did what I always do; Sat down, absorbed all the information, shut my mouth for a while, and developed a plan.

One year and seven days ago my friends, people I have known and cared about knocked on my door, called me, walked into my home and said nothing more than: how can we help? I have never been good at accepting help, I am a helper by nature not a recipient, but all that changed and they assured me with love that I had no say in the matter.

One year and seven days ago my children sat dumbfounded, confused, and unable to comprehend exactly what was going on. Words like chemotherapy, drugs, cancer, Leukemia, blood cells, and sick all became a staple of conversation in their worlds. They never quite knew how to take it all, the thought that their mother might die, but they did in their own ways. It changed them a little, I am not sure what the lasting effect will be, only time will tell.

One year and seven days ago a six month odyssey began with month-long stays in the hospital, missing most of our high schoolers senior year, juggling a family with the help of friends, multiple midnight runs to the emergency room, nights alone wondering if she was going to die, nights in bed with her wondering if she was going to die. Days knowing she would be alright only to be slapped in the face with another trip to the hospital. Days of triumph and love, nights of cursing our life and the strain it was bringing to our family and to her. Nights of praising God for the reprieves, and slowly understanding things were going to get better.

One year ago today we had Thanksgiving in our house. The meal was completely prepared by friends, family and strangers. It was amazing that so many people cared about us, our family and our children to the extent of ensuring we had a thanksgiving meal. We Facetimed with Jacy that night and before desert could be dished I was back on the road, heading to Kaiser to sit with my wife, thankful to be able to do so thanks to a rapid diagnosis by an extraordinary young doctor and a myriad of family and friends watching my children.

Tonight, my wife lies next to me asleep from a long day of travel and family. She is not perfect, she may never be the same as she was before, although it won’t be for a lack of trying. Her emotions are still raw from 6 months of chemo-hell, her brain struggles with the after effects of chemotherapy at times which leaves her frustrated and her body is always doing strange things. We don’t know how long chemo-brain will last, we don’t know how long her body will continue to hold her down when it comes to strenuous activities and we don’t know if the leukemia will come back in one year, five years or never. But put all that aside and what you’re left with is one mother of four who can hug and kiss her children and to date is cancer free.

For that, on this Thanksgiving Day, I am thankful….

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The finish line is near!!!

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So many things in life we take for granted. The simplest of acts become mundane, automatic, without drive or thought. Yet when we see someone struggling to perform a “simple” act; walking across the street or sitting down unassisted, putting on clothing without an obvious look of disarray.  Read, anything, without confusion or hold a conversation without trailing off into never never land.  Our thought process leads us to feel pity, we take stock upon ourselves and wonder how we would survive under these conditions.

I have witnessed my wife over an almost six month period transcend from a vibrant, healthy, athletic, intelligent woman to a human being half her size, barely able to walk under her own power, not able to finish a sentence or complete a thought without frustration or mental exhaustion. A woman who traveled the world to one not able to rise from her bed while trapped inside a white four walled hospital room cell.

She cried, I cried, she longed to come home, I longed to have her home, she felt as though life was passing her by, I felt as though our life was passing us by, she fought hard, I fought hard. Cancer/Leukemia is no joke. Chemotherapy is no joke. My understanding of all we take for granted in our lives now runs very deep.

Thank you Jacy.

Now you are probably wondering why I am thanking my wife? But what you don’t understand is without her none of this could or would have been possible. The “this” I am referring to is compassion, strength, love, anger, inspiration.

Jacy Franceschi proclaimed while holding my hand on November 20 2013 that she would beat Cancer. She thanked the lord for blessing her with this challenge, she apologized to him in prayer for she didn’t understand why it had to be her but she was willing to accept what lay before her. We looked into each others eyes, she proceeded to ask what I was thinking. I told her if anyone could beat cancer it was her. We talked about fear, our love and the future we were going to have together. We cried some more…

After sitting in the hospital our first night I vowed to make her life as seamless as possible while we traveled along this journey.  It took a lot of hard work but I am pretty sure I succeeded.

She says I was her rock. Yet she was just as much mine. She says I always made her smile and laugh when she felt horrible. In reality she made me laugh as only my wife knows how. She said without me she would never have made it. In reality because of her when I was tired or hurt I never complained, after 18 hour days of hospital time, childrens needs and the ranch, it was the thought of being able to see her the next day that kept me going.

Because of my wife our life needs to slow down, and because of Cancer it finally will.

We never know how long we have, we never know the exact moment of time it will all come to an end. But what we do know how to do is live for the here and now. What we do know how to do is accept what is given and forgive what is not. What we do know how to do is love one another for every minute of every second of every day. What we do know how to do is not waste our precious time here on earth.

Inspiration comes in many forms and as I found out over the last 6 months, mine comes from my wife and hers comes from me.

November 20, 2014 the world felt as though it would end.  November 22, 2014 we found out had she not gone to the doctor when she did, she most likely would have passed away a week later. Here today April 22, 2014 the darkness is gone, we are still a week away from a final bone marrow draw, we are still a week away from hearing those words we have been longing to hear.

The sky is bright, and so is our future. She is becoming incredibly stronger each day, I feel blessed to share every moment with her possible. I feel this chapter coming to a close, and I cannot wait to see what the next chapter holds, for her, for me, for our children.

Life is good… Thank you Jacy, I love you..

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Does the sun set on Leukemia?

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“To run and fly, jump towards the sky, to trip and fall where no one see’s at all, to sit and wait a heart truly aches, to smile and cheer dread no longer feared, mired not in contempt an energy much better spent, to enjoy every moment with my wife, now wouldn’t that be a splendid life…”

The sun has risen and set upon 180 days, 4,320 hours, 259,200 minutes, 15,552,000 seconds. Time that for most was nothing more than a passing blip in an otherwise hectic day. Coming events, moments sectored into fragments, blocks, bullet points upon a schedule where children are dropped at school, animals are fed, meetings are kept, practices attended, showers to be had and pillows to be slept upon.

The sun rose and the sun set. Under a bright fall moon one woman gazed upon the stars to ask why? To cry tears of fear, sadness and remorse. A woman pleaded with her God for an answer but was left momentarily in silence. A woman stared into a nights sky, thinking about childhood, college, adulthood and the love for a life lived. Hoping beyond hope all this would be was another bump in the road and she would live to see her adult children stand on a balcony under a full moon and not ask God why, but say thanks for all he has provided.

180 days. A man knelt in an arena and cried. Not for himself for you see he has walked the road of sadness many, many times in his life. But for his wife. This man who lives to ease his families burdens and carry their pain could do nothing to make this next challenge in life any easier. He could not reach inside his wife and yank out the evil that surged within, instead he would need to remain patient. To willingly wait, and know when to speak and when to say silent. To understand he could not fix everything and that was ok. As those 180 days passed by slowly without rest or sleep, he would come to value the meaning of just being there by her side and knowing that was enough. He learned to cradle and quietly without judgment let the water flow upon his chest through sobbing breaths. He would become stronger with each bought, each treatment and the ensuing moral disintegration of spirit. This man, he also prayed to stand hand in hand with his wife while watching their adult children thank the lord for all he has provided.

The sun rises and the sun sets. How many more days remain? An answer none of us know, will know or should know. Life is a gift of love. It started with our parents, two people who at one time loved each other so much we came to fruition. Some parents still love each other that much, others sadly do not, but either way we are here, living breathing examples of a look, a word, a time, a kiss an embrace.  Carrying on a legacy that is ours to write, shape, mold into a future for ourselves and quite possibly through the absolute love of another, our children.

Jacy is alive, Leukemia has not taken her from this earth. 180 days of literal HELL she has survived thus far. We are told she holds the perfect genetic markers for success. In two more weeks another bone marrow draw will provide proof in the proverbial pudding. Two years cancer free and our celebrations will become larger with each passing moment in time.

She worries about damage done, all she has lost both mentally and physically, she worries she may never feel whole again. To those worries I say:

“Gentlemen, we can rebuild her. We have the technology. We have the capability to build the world’s first bionic Leukemia survivor. Jacy Franceschi will be that woman. Better than she was before. Better, stronger, faster.” images

Sorry, late 70’s humor..

Two years, a little by little everyday until this all becomes a story of survival, a distant memory, an experience to draw upon during life’s trials and tribulations. Sure it will be difficult, yes it will become frustrating and even embarrassing at times, but in the end, my wife will be whole.  My life will be whole again, and how I long for that day.

Thank you again to all who have supported us, never left our sides as the going continued to get rough.  This is the end, I feel it in my bones. In two weeks celebrations of joy will ring true and none of it could have been done without all of you! You are all my Rock, helping hold me up so I may continue to be hers.  I love you all, you know who you are!

The power of thought and prayer is amazing! God bless you all…

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Betty (James) has entered a new venture to help make ends meet during this trying time. I am proud to say I am now a distributor for Javita Weight Loss Coffee products. Javita Green Tea has kept me running strong through every hospital trip, late night Emergency Room run and long days handling the ranch, kids and sporting activities alone! I can’t say enough about this great product.

So if you are looking to lose a few pounds by simply drinking coffee, or need the mental stimulation and health benefits of pure unrefined green tea. Then please take a moment and explore http://www.buyjavitacoffee.com/javabetty and order some today. You wont be sorry. I promise, plus every purchase made helps keep my wife home a little longer for recovery.

Bless you all,

Betty

The Face of Leukemia

 

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The face of Leukemia is slowly starting to smile again. Her radiance glowing from under the shroud of another long stay. Its been another 8 long grueling days of high fevers, infections, blood work with crazy numbers, CT scans, swollen lymph nodes and skin so irritated that touching it or an accidental rub or scratch would leave strange marks.

This week Jacy endured another week long headache from hell, nausea, and a colossal loss of appetite. She lost more weight, became so fatigued that walking from the bed to the bathroom left her exhausted. She hallucinated under the spell of multiple pain medications and tried her best not to throw up when anyone was around.  The face of Leukemia has been drug through the trenches, fought the war, wiped the sweat from her brow then laid still wondering if there was more.  and there was…

Under the covers on top of the bed, warm or cold, drenched in sweat or so hot and dry the desert looks cool.  All this woman can think of is coming home to see her babies, her children, to be normal, a mom like any other.  The face of Leukemia is yearning to tell her kids to clean up their rooms, help them with homework, watch them ride their horses or simply walk by an open door at night, only to peek in and watch them sleeping peacefully.

No longer do the simple things in life feel mundane.  Nothing is taken for granted; for you see when the better part of 5 months has left you strapped to a hospital bed going through the metabolic changes her body has endured, something so simple as making school lunches for the ones you love feels like striking gold.  When you have nothing but time, and are trapped in a room with no hopes of escape the world begins to look different and so by her own admission, it has changed.

As for me. I can’t wait until she comes home. My children are the most awesome individuals I have ever had the pleasure of knowing.  They screw up and make mistakes like any other children but they are mine.  But no matter how hard I try a child needs it mom.  There are only so many things I can do or say to make-believe everything is all right. But children are not stupid, they see the distress upon my face, the furrow in my brow, they feel when my temper has shortened and patience worn thin.  They adjust, they try, but stability still needs to reign for normalcy to occur.

It has been a good long stretch since I have seen her million dollar smile; understandably so, yet it is what I long for. To see her strong, to see her laugh, to see her ride a horse again, to see her walk a set of stairs without becoming winded and then saddened for the memory of what she used to be. To see her triumph.

As for me? As for me, I have decided my problems shouldnt matter. My complaints are small, may pains irrelevant, my loss of sleep inconsequential, my stress load manageable. For as for me, I don’t have cancer, I have a healthy body, therefore I have no complaints.

Today she smiled, I surprised her while dropping a patient off at the ER. Popping in for a just a minute! Walking down the corridor I came to her room, slowly turned the handle and walked in, she was propped up, texting. I said in an altered deep voice: Excuse me mam we are going to need to palpate your abdominal area, can you please undress for me. With a startle she jumped, seeing it was me, she smiled. A big giant smile! The most beautiful smile I had seen in a very long time. It made my day, it made her day as she was happy and surprised to see me.  It was only for a few minutes as my Engine company needed to go, but she smiled. It was radiant, it was warm, she was beautiful.

The face of Leukemia is smiling…

Which must mean Cancer is losing….

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Keep Calm, its only been five months..

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(I apologize for not having written in a while, and though this isn’t the best, it hopefully will at least allow you all to know where I am at mentally)

Over the last 5 months plenty of time has passed for me to ponder the ramifications associated with cancer.

Endless days and even longer nights leaving me sleepless, cold, worried, angry, happy, sad, confused, and exhausted.  Staring outwards into a twinkling nights sky, or straight down at my feet, lost, strained, asking God why.  Ramifications indeed..

I have held a little boy who doesn’t understand why his mom needs to be gone all the time.  One day at home then vanished into thin air, only to reappear 7-14 days later looking gaunt, pale and exhausted.  This recurring abnormality in domestic motherhood  just doesn’t compute in a 9 year olds brain.  He needs his dad alright but there is nothing like the hug his mom can bestow upon him and the smile that shines on his face afterwards.

I have driven to games, practices, and rodeos alone. Elicited the help of many wonderful caring friends who dropped what they were doing without so much as a whimper to ensure my family was cared for in my absence. Helped (not well, but hey who said I was smart) with homework, read books and had books read to me, washed laundry, cleaned dishes, scrubbed floors, toilets, windows and walls. Watered flowers, cared for dogs, horses, goats and chickens.  Folded laundry until 2 in the morning to ensure everyone had the right clothes for school, baseball, softball, hunting, etc…. And yes in a very strange bedraggled way I have cherished every minute.

Don’t get me wrong I performed all of those tasks prior to Jacy becoming sick as well, but they were shared tasks, and as with all relationships, some portions were performed by a certain partner because that partner excelled in one area over the other. Laundry has always been kind of my thing,(especially the folding portion) where as homework has always been Jacy’s (college grad/teacher and all).

Cancer has brought my children closer to me, helped me understand a little more of who they are as people.  From seeing them handle this situation with their mother, to the inspiring abilities shown by the ones who have stepped up their games around the house during this time.  Their interaction with the hoards of caring people stopping by our house or cornering them in a park, they have all made me proud. It has been a very hard, long frustrating road, but that road has also been filled with love, understanding, caring and commitment.

Cancer also filled my heart with fear.  For every great moment I shared with our children, there was fear that Jacy would never see those moments.  Fear our children would become used to their mom not being around, fear that she would not win this fight and the children would be left devastated, emotionless voids.  Never remembering their childhood has one filled with great adventures, laughter, family and fun, but of the time their mother contracted Leukemia and perished. No child should watch their mother die. My fear is entrenched in losing faith. Something I have always had, a security which has kept me strong my entire life.  Fear I will lose that feeling of always “knowing” what to do, how to behave, which direction to travel. Its faith which has kept me solid in those beliefs, it is my faith in God which has laid a foundation for me to build upon. Yet what if my faith eludes me? What then? More fear.

Up days and down days, days filled with forgetfulness, days filled with unexplainable irritability, days filled with an abundance of love, and days filled with dizziness, nausea and sleep.  These are the emotional stages Jacy travels through.  Highest of highs and lowest of lows.  It’s a hard ride for me at times and it’s always an even harder ride for her. Yet each day is one day closer to the treatments being over, her body trying to heal itself and our lives returning to some form of normalcy.

She came home from her last treatment on Sunday.  It was a day of joy. Only two more weeks of blood transfusions and testing, cumulating into a bone marrow draw somewhere during the third or fourth week.  Many days ahead filled with more fears, watching her body decline time after time until her blood cells, both white and red begin producing normally on their own.  Then waiting..

Fingers crossed, all goes well and Jacy will be able to finally claim to be cancer free! Over the next couple of years she will do her best to lead a relaxed, non stressed lifestyle and we will continue to pray Leukemia never returns.

5 months, five long and lonely months.  I miss my friend, my spouse, the woman I love.  To have her home and whole will indeed be a blessing.  For five months I have slept alone many nights and like the true idiot I am, I never once slept in the middle of the bed! Always on my little 6 inch wide portion, leaving her side (which is 3/4’s the mattress) undisturbed. Out of habit or respect, I do not know, but wow, what an idiot! I really blew an opportunity to really stretch out and sleep like a king! It’s no wonder I never got any sleep! Oh well I digress….

A light is truly at the end of the tunnel, we can see it. Keep a prayer for us please, prayer is a powerful thing and I believe it helps keep my faith alive and her healing powers strong.

More to come, God bless you all…

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A Man of Constant Sorrow

 

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I am sorry I havent written in a few weeks…

Life events have a way of giving or changing perspective, enlightening or suppressing emotions, giving one pause or setting one free.  This last week has been a complete disaster for me personally, leaving me overwhelmed, under the weather, lethargic, sad, and generally abandoned of feeling. Leukemia brings with it storied highs and tremendous lows, leaving its target families trying their best to muddle along somewhere in the middle.

The Saturday before last I toddled off to work as a very happy Ms. Jacy was home safe and sound, with children and a host of good friends checking in on her throughout the day. By noon a leukemia sized storm was brewing as she slowly began spiking a fever while feeling  a tad ill.  Refusing to admit something wasnt quite right (the hard-headed Cuban in her) she scoffed at my inquires and thwarted my meddling from afar. Finally after several rebuffed suggestions this woman of mine caved into peer pressure brought forth from one equally stubborn, very close family friend.  Against her own better judgement she climbed into said friends car and headed for the hospital.

Not a minute to soon

Upon arriving in the ER, blood was drawn, counts determined to be low and her fever began spiking at 102 degrees.  Jacy also began feeling a heightened pain around her Powerport insertion site in combination with redness and some swelling.  She called to give me an update, and as I worried about her well-being Jacy promptly cut me short, telling me to stay at work, all would be fine as our friend was staying with her.  What she didn’t know, what we couldn’t know was this was the beginning of a 6 day hospital stay that would bring more pain, tears, depression, anger, nausea, and hatred.  All emotions geared towards a level of care, a lack of information and a medication induced headache that would rival even the most severe pain ever experienced in her life.

Ms. Jacy had developed an infection within her port, most dangerous considering it is a direct line to her heart.  This brought an uneasy rest, fear and for a moment a feeling as though this just can’t go on any longer. Her days were filled with delirium, nausea and a much-needed (at times) drug induced sleep.

In a 6 day period I laid awake almost every night, worrying about her. Whether the infection was worse, whether or not the nurses (not chemo nurses mind you) had the right medications at the right time, are they administering blood transfusions at the right rates and have they given her the appropriate pre-meds prior to delivering the product. What are her plasma counts and if they are being taken into consideration why are her platelet counts so low? Yep every question I could think of running through my brain at all hours of the day and night.  Throw in taking care of the children, making sure they weren’t scared or worried about mommy being in the hospital again, ensuring the littlest one Parker understands whats happening since it seems every time he goes to school and mommy promises she will be home when he returns, she is not. Throw in household chores and our ranch (including one escaped horse at 3 in the morning), it was indeed a long sleepless week.

Now as I have said before, I wasnt alone. My barn people came through as always, allowing me the freedom to only do a limited amount of chores, and the flexibility to leave at the drop of a hat. Close family friends were always on other end of the line, asking, pleading for anything they could do to help.  And last but not least the constant array of giving people who have helped with dinner for our family.  I am incredibly thankful for you all..

But my brain, that dirty little Dura-matter, neurological, master piece floating inside this thick head.  If only I could shut it off for more than an hour, it would be grand.  If only I could turn off the constant questioning, turn down the vast medical knowledge that spins so freely inside.  Tricking me, scaring me, giving me panic attacks in the middle of the night! If only..

To sleep an entire night without nightmares, or wake up sweaty and cold reaching, feeling, to find no one there only to remember she is housed on floor two, room 213, alone, crying, sleeping, covering her head with ice and wondering why this is happening to her. Wanting to hold her, make it all go away, pretend it’s never happened. Is that too much to ask?

I am usually very positive, bringing the uplifting thoughts and prayers, trying my best to understand the meaning in any moment or given time. But  lately it is getting harder and harder.  Watching her cry, feeling her sorrow, asking herself; why me? Feeling utterly helpless.  I am a fixer, it is in my nature.  If there is a problem I fix it, I don’t wish to sit around and ponder a problem, cry over the problem, I just want to fix it! I can’t fix this! I can’t take it away! I can’t make her feel better about herself! I can’t help her to understand how beautiful she is, both inside and out! Cancer is chipping away at her confidence. Her kiss is still the same, her smile is still the same, her eyes still light up my heart! Cancer can’t possibly take those truths away! But it is trying very hard mentally.

So I can’t fix it, a hard pill to swallow, and with that, my sorrow continues.  

I was raised to believe a good husband protects his wife, shields her from ugly, sadness and pain.  That as her partner it is my job to carry this load. My responsibility to take her hand and lead her through this journey, minimizing the painful effects, bearing that burden.  But what you don’t know, what you don’t understand until you are lying in bed with a million medical “what if’s” running through your head is Cancer don’t give a fuck how you were raised. Cancer doesn’t care what your ethics are, or the belief system by which they are supported. Cancer only cares about cancer, tearing down its host from the inside out, one cell at a time. Cancer teases its victim and family with good days then pummels them with bad.  In the end, you lay there, ice on your head, missing your loved ones, crying because you are alone, listening to machines beep and click, while nurses poke you, prod at you, and take your vitals every 15 minutes, yet you remain trapped in a room you cannot leave.  Oh you want to leave, the door is right there, but that I.V. octopus has its tentacles forced deep down within your veins, keeping you from moving any farther than the restroom. Humiliated in an open back robe, red sock slippers and mesh net hospital underwear.  In the end cancer not only feels like its killing you, but as though its killing your spouse as well.

I know, its tearing me apart on the inside. Many days there is a smile upon my face, but deep down, I am not there, my sorrow holds strong as I think about my wife either in the hospital or at home, dizzy, forgetting things, some days struggling just to walk down the stairs. Cancer is a rat bastard and I hate it! I hate what it represents, I hate the chemotherapy (yes I blame Cancer but in reality it is really the chemotherapy) killing my wife slowly from the inside out, I hate that it is quietly wreaking havoc on our children, reaching out with its bony finger of gloom,  forever changing our lives.

I hate feeling like a man of constant sorrow.

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DaRk PlAcEs and InSpIrAtIoN

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Darkness creeps upon you from nowhere some days; driving your car, sun shining upon your face, smiling at a favorite song on the radio then darkness comes, slowly creeping, covering your inner warmth, wiping a dumbstruck smile from your face.

Everyday since November 20 2013, the darkness has tried; everyday since that Wednesday morning as I cried, phone by my side, head hung low, horse under my arm wondering what was wrong, darkness has crept slowly across my cranial void. You can shake your head, scream out loud hoping to make it go away, but that’s the game it plays. Feeding off uncertainty, doubt, pity, and weakness of spirit.

Darkness is like mold, damaging, covering, smothering every living breathing moment of happiness that could only flourish under the warmth of love and certainty.

Everyday darkness has tried to take hold, and everyday I have repelled its advances. Darkness knows the roads I have traveled and it lays in wait for my weaknesses to surface. But what darkness doesn’t know is those weaknesses, those damaged feelings from a life lived hard are what keeps me from giving in to its cold, ugly shadow.

Darkness cannot have me, I will not let it ruin who I am, what I stand for, the ethics I live by or emotions worn brightly upon my sleeve. For you see what darkness wants is compliance and I have never been one to comply without a fight.

So everyday darkness has tried and everyday I have searched for inspiration.

Inspiration: Stimulation of the mind or emotions to a high level of feeling or activity.

Inspiration can be found everywhere, you must only be willing to look. I see inspiration in a flock of birds struggling against the wind, a bee trying its hardest to fly even though its legs ar burdened by twice its body weight in pollen.  I see inspiration in an elderly couple holding hands while slowly, carefully weighing every step as they move across a concrete landscape. Inspiration is all around, from a toddler learning to walk, to a quadriplegic basking under a mid days sun, smiling, eyes closed, at peace with the world during that very moment in time.

When life weighs heavy upon me, and darkness resides, it only takes a moment to chase it away. Closing my eyes, remembering the day I married my wife, our relationship forged together from unimaginable circumstances and a belief system that has only grown, expounded upon over the years. Seeing her smile when all seems lost, her eyes twinkling at the sight of me riding up to her on my horse, or meeting her at the bottom of the stairs for a much-needed date. Watching her beam with pride as another rescue dog is placed into a loving home or witnessing one of her children accomplish a goal that previously seemed unattainable.

Inspiration comes in all forms and it has become a quest for me. For as Cancer continues taking its toll, as cancer tries its hardest to smother the light, cool a souls warmth and darken the twinkle in her eye, some days it becomes harder for me to locate, quantify.

Watching, waiting, fighting, struggling, feeling as though you are in a pool with no sides, weighed down by cancers baggage, a nostril just barely above the waterline. Choking, gasping for air, pondering what would happen if you gave into the fight and let the waters depths have you. I think about how many spouses just like me are trapped, endlessly fighting the darkness and all it represents. From destroying our souls to allowing our brains to ponder an end we are fighting against. Where does their inspiration come from? How many are grappling with an inner evil, unable to recognize even the smallest tidbit of inspiration reigniting their souls?

My wife has inspired me everyday for almost 12 years to be a better man, to become a kinder human being, and to ignite passion in others.

So the darkness will never win! For what once was bright and easy shall brighten our house again! I will always retain a positive outlook on this chapter in our lives and hopefully show our children how to handle family struggles with strength, kindness, and the ability to stay positive by finding inspiration in all that surrounds them.

In the end we will walk out of the hospital hand in hand having traveled this road together, inspired by the other without a hint of dreaded darkness in sight.

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Nurse Betty….

20 things Nurse Betty will probably never hear from a Chemotherapy patient.

  1. Does this hospital gown make me look fat?
  2. Man I could eat a horse!
  3. Honey could you stop by the store to purchase me some conditioner?
  4. Now that was an awesome workout!!
  5. Zofran is for pussies!
  6. MMMMMMM-M hospital food again! Hell yeah!!!
  7. This hospital bed is great! I slept all night, like a rock!
  8. Go outside? Hell no I got all I need right here!
  9. Man I look great naked!
  10. I don’t like fresh fruit and vegetables anyways!
  11. Another line to put in nurse, the more the merrier!
  12. Whew! Cytarabine is such a rush!!!! Yah!
  13. I cannot wait for another bone marrow draw!
  14. Vomit-its what’s for dinner, and dessert and breakfast, and oh well you get the point..
  15. Will you please, take the needle out of my Power port and put it BACK in again? Please!
  16. I think you forgot to take my vitals.
  17. Can I please pee in the top hat at home! Please?
  18. I have no idea what my latest blood counts are?
  19. When I get outta here I’m going to Disneyland!!!!
  20. Man oh man I love that I haven’t pooped in three days!

If you have gone through, are going through or are in the midst of Chemotherapy then you know exactly what each and every one of those statements mean to you, personally.

My whole life I have always tried to find the humor in everything. I have too, it is my coping mechanism. I am the guy who can go a really, really long time being yelled at, put down, struggling under an emotional burden and laughter always gets me through, allowing me the opportunity to push my feelings down! Farther and farther, deeper and deeper, because hey, they are my feelings after all and expressing them is just a waste of time right?

So with laughter, nervous, caddy, giggling, straining laughter these feelings of helplessness and grief, struggle and heartache, get pushed farther and farther into a never-ending emotional caldron! hee, nervous hee, ha twitchy ha…..

Don’t worry, once its full down there, and it heats up a bit I’ll let it all out! I promise, scouts honor! I mean all it takes is a certain word or situation and them Whammy! My emotional toil will spill forth like Vesuvius blowing its lid, burning, maiming, damning all around me into an eternity of fear.

Scared you didn’t I?

Seriously, we are very blessed for this sense of humor we have retained throughout this whole event. I am calling it an event because in the grand scheme of things that is all this is-an event. We will look back upon it someday and laugh, probably cry a whole bunch too, but I am sticking with laughter!

My wandering point with all this drivel. (besides hopefully making you smile a bit) Wake up everyday and be thankful. Your troubles are not so big. Money comes and money goes, jobs are a source of income, not a source of heartache and pain. Your children should bring joy to your life, no matter how troublesome they may become. Love them, hold them and try to understand what they may be going through, then show them the right way to deal with life’s little inconsistencies.  Tell people you love, how you feel, tell people who inspire you, bring meaning to your life just what an important role they play in your personal growth and sanity.  Everyday is a gift for you to open, unwrap, be thankful for this gift and enjoy.  Remember it is never to late.

Even when Jacy and I don’t see eye to eye, even when my selfishness helps me to relocate a foot into my mouth. I love her. She is mine and I am hers.  No amount of stress related to this family centered catastrophe will change that! Is it fair? No. Do I accept it? Yes. I hate this disease for what it has done to her, not me, but her.  No person deserves to go through what she is enduring.

When she lies beside me (hospital or home) I don’t see Jacy the chemotherapy patient, I see Jacy, my wife, my partner, my love. When she places her head onto my shoulder and closes her eyes, there is no cancer, there is no gloom and doom, there is only us, our relationship, the warmth radiating from within our friendship, there is peace. All the reasons we married are pushed to the surface for us to embrace, hold in front of our faces, relishing, reminding us there is no mountain we cannot climb, no obstacle we cannot conquer, together. Staring at the ceiling, gently stroking the soft baldness that is her scalp, I am at ease, she is at ease and she sleeps. It’s not much, but its mine, all mine, our little moments together.

It is love….

 

 

 

 

The gift…

Life as of late is holding me down. A weight upon my chest, a hand-held defiantly to my face, paranoia, fear, sadness, exhaustion all playing upon my emotions. Some days are harder than others, most days tolerable, my fortitude is strong, a resolve steadfast, I awake each morning and start all over again.

My wife is worried that my plate is to full, she see’s it written across my face. The new lines forming upon my brow, a redness to my cheeks, a constant itch that travels across my head, face, chest, neck and shoulder when stress becomes intolerable.

Conversations change, today is a “good” day while 12 hours later, no conversation at all, left staring, wondering what I would do if she didn’t come out of the ER alive? Laughter becomes fun, dark humor is everywhere, trying, straining, yearning to pretend this is not happening. A ceiling is my new meditation portal, alone in bed, lying dead straight in the middle, wondering, worrying. Past times would find me reveling in a moment like this, now ashamed to be taking up a portion that is her place.

Why? Why does life go like this for some, yet flows so effortlessly for others? Never was I blessed with any one talent that allowed me the luxury of standing apart from a crowd. My entire life has been marginalized, left in the “average” column.  Average size, average intelligence, average GPA, average looking, average job performance, average minor successes.

Yet for some reason I feel as though God has blessed me with a gift. A gift others would most likely refuse, kick to the curb, drop and run away screaming. I am willing to admit, when bestowed upon me it was not an easy one to accept. But being a man of faith, I knew no matter how hard I fought, in the end it was mine. And so, it has come to pass that with this gift, I have earned a few extra lines upon my face, some unwanted grey hairs, an inability to sleep some nights along with an overall fear of what may lie around the very next corner.

This gift it seems also brought traits I never knew existed within me. Care, compassion, love, patience and understanding. Not just for myself, but for all forms of life. Imagine a gift so powerful it opens your eyes wider than ever before, it ignites your senses to an almost raw irritating state yet you are thankful for the feeling. Imagine being able to stand, while all crumbles around you, seeing an alternative, an answer, a future destination. Imagine knowing when the day is through, no matter what has been thrown emotionally towards you, deep inside you will awaken the next morning to do it all over again! That is what this gift has become and I wish I knew how to share, but I just can’t.

I carry the souls, the faces, the lives of all who have perished before me. Those souls have built me into a stronger man over the years, stronger than I ever was or could have been in my youth. From every response, medical aid, vehicle accident or fire that have gone badly awry; to the losses of those closest around me, ones that I love more than most could imagine. I carry those days, those moments, those instances of life disappearing before us in my head, in my heart, a scar upon my soul. Some moments come with pictures that can never be erased, tales that can never be told, slivers in time trapped for eternity within my dome. Family members never knowing, never seeing, never having to see the imminent demise of those so truly loved. No horrid pictures permanently scarring their psyche, no electrifying screams, no tantric goodbyes. Over 19 years I have done my very best to absorb, deflect, and care about those who have lost someone. Carrying that burden has been my privilege. God allowed me this wonderful gift.

And so now the gift hits home. What better human being to handle this very situation than myself.  I have been trained well, prepared for all contingencies through mentorship and experience.

Yes I am tired, yes my worrisome self is working overtime, standing on high alert, yes my heart stops, skips a beat every time she proclaims not feeling well or becomes clammy and pale.  But my gift churns onward, allowing me an ability to focus on the good things and recognize in the end all will be ok. Teaching me sometimes one needn’t seek all the answers, but instead too know deep down in their heart things will be fine.  My gift tells me there are those in much worse shape than we, and to be thankful for all we have before us. Constantly reminding me how precious life truly is and to awaken every morning with a smile, because you can.

So as my wife worries about me, as my friends ponder over my ability to handle this very situation, as our own parents fret over the unknown, do not worry, like a ball player riding the pine all season long, all I ask is this, put me in coach, give me a chance, this gift could possibly be the one thing I am actually good at! Becoming the Abbott to her Costello, Jerry Lewis to her Dean Martin, the Sigfried to her Roy, and then when my time comes, my moment here on earth is finished,  I will finally be a success and wont have lived an uncaring, callous, self-centered, marginalized, average life…

Now I think its time for some sleep.

Goodnight Jacy I love you and thank God for you everyday… Relax, all will be just fine..

 

 

Unknown-3

Leukemia-Blood

blood

Blood is a bodily fluid in animals that delivers necessary substances such as nutrients and oxygen to the cells and transports metabolic waste products away from those same cells.

In vertebrates, it is composed of blood cells suspended in blood plasma. Plasma, which constitutes 55% of blood fluid, is mostly water (92% by volume),[1] and contains dissipated proteins, glucose, mineral ions, hormones, carbon dioxide (plasma being the main medium for excretory product transportation), and blood cells themselves. Albumin is the main protein in plasma, and it functions to regulate the colloidal osmotic pressure of blood. The blood cells are mainly red blood cells (also called RBCs or erythrocytes) and white blood cells, including leukocytes and platelets. The most abundant cells in vertebrate blood are red blood cells. These contain hemoglobin, an iron-containing protein, which facilitates transportation of oxygen by reversibly binding to this respiratory gas and greatly increasing its solubility in blood. In contrast, carbon dioxide is almost entirely transported extracellularly dissolved in plasma as bicarbonate ion.

Vertebrate blood is bright red when its hemoglobin is oxygenated. Some animals, such as crustaceans and mollusks, use hemocyanin to carry oxygen, instead of hemoglobin. Insects and some mollusks use a fluid called hemolymph instead of blood, the difference being that hemolymph is not contained in a closed circulatory system. In most insects, this “blood” does not contain oxygen-carrying molecules such as hemoglobin because their bodies are small enough for their tracheal system to suffice for supplying oxygen.

Jawed vertebrates have an adaptive immune system, based largely on white blood cells. White blood cells help to resist infections and parasites. Platelets are important in the clotting of blood. Arthropods, using hemolymph, have hemocytes as part of their immune system.

Blood is circulated around the body through blood vessels by the pumping action of the heart. In animals with lungs, arterial blood carries oxygen from inhaled air to the tissues of the body, and venous blood carries carbon dioxide, a waste product of metabolism produced by cells, from the tissues to the lungs to be exhaled.

Medical terms related to blood often begin with hemo- or hemato- (also spelled haemo- and haemato-) from the Greek word αἷμα (haima) for “blood”. In terms of anatomy and histology, blood is considered a specialized form of connective tissue, given its origin in the bones and the presence of potential molecular fibers in the form of fibrinogen.

Wikipedia

I know that was a hell of an introduction to today’s blog, but it was really important for me to reaffirm or institute a knowledge base for you to draw upon as I ramble on about our recent tribulations in regards to chemotherapy and its nasty after effects.

Leaving the hospital after 7 days of chemotherapy, Jacy feels good, not great but good.  Our hopes remain high and we press onward as no other options but to do so exist.  Two days out of the hospital and allergic reaction occurs after receiving a shot of Neupogen.

To the ER we head and a long night of tracing down this problem while treating associated symptoms ensues.

14 hours later we are home.

Jacy continues into the week still feeling well, but weaker by the day. Chemotherapy is working as designed, coursing through her body, and wreaking havoc as cell counts drop lower and lower.  Now here is where things get tricky. You see Jacy understands what it feels like to have an abnormally low cell count having experienced this phenomenon within the safe confines of a hospital. Because of this her doctor has her entrusted to recognize this feeling, make the appropriate phone calls and return to the local infusion center for a much needed blood transfusion, boosting cells back into her dying system.

Jacy instead decides to wait..

Why? Because she has an appointment for a blood draw later that day and she doesn’t want to inconvenience anyone. (Always the worrier) So we arrive at the designated time. One problem, she has become so cell depleted, I can barely get her out of the car into a hospital wheel chair. Wanting to take her straight to the ER (color is no good, breathing is shallow and she is exhausted from simple movements) I instead (per her request) head to the infusion center, as planned for her appointed blood draw.

Upon turning in our paperwork, a nurse appears from behind closed doors to grab multiple appointment slips from a basket and I quickly take this opportunity stop her, informing her of my wife’s worsening condition. Walking her over we find Jacy in her wheelchair, speaking repetitiously; I don’t feel well, help me I don’t feel well, something’s not right, something’s not right, I don’t feel well. The nurse takes one look at her and it’s off to the races.

Rapidly she is brought inside, her port tapped, blood drawn, and we are treated like gold as it quickly becomes obvious she is in need of more blood. To the ER we go!

In the ER, we are welcomed once again by friendly faces, my fears are calmed, my heart rate drops and we begin another arduous journey of emergency care.  Thinking this will be no big deal, it is after all just a blood transfusion one more in a list covering nine such applications over the last 30 days, I get her settled, talk with the doctor about the plan, watch as they put the standard medications on board for the delivery of blood and make a quick exit to run home ( a mere 7 miles away) and put our children to bed.

No big deal right?-WRONG

The text comes one hour later; Oh God, I am covered from head to toe in hives, my eyes, ears, scalp, everything! I itch so badly! I’ve had an allergic reaction to the transfusion and they are determining what to do!

Are you freaking kidding me! A reaction to the Neupogen (could have killed her) and now a reaction to blood, the one substance she needs most to survive! What the holy hell? Heart racing I head back over to the ER and meet up with my swollen, covered in hives wife!

After a long consult, the addition of a steroid that made her feel as though electricity was being pumped into her private parts (yes the vagina) and a substantial reduction in flow rate, with a large dose of Benadryl, Jacy nods off to sleep receiving the blood she so desperately deserves.

16 hours later, feeling like a million bucks Jacy comes home….

5 days later..

Jacy begins to feel “funny”. Yep it seems as though her body has still not hit rock bottom! Neupogen everyday and her bones are just starting to ache, which is a good sign; it means cells are trying to grow! But she doesn’t feel good, so this time she calls ahead, makes the proper arrangements, we head to the ER with plenty of time before her body hits rock bottom. The hospital can’t order the blood until she is physically on the property. So the sooner we arrive the better.  Walking through the door I am beginning to feel as though we have never left.  This place, this wondrous place of miracles is starting to feel like Groundhog Day to me.

Once checked in we walk to our room, none of the regulars are around so far, but as always the RN’s are amazing.  Jacy is settled into her room, her port is tapped, a very nice conversation between the male RN and me ensues.  It feels like old hat, unfortunately as though we belong here, and sadly a feeling like this will be her way of life forever comes over me. A thought enters my head; how many nurses will we meet in our life from this point forward? Will they all be as wonderful as those blessing us now?

Blood is ordered. The syrupy, red mixture she needs to survive. We are grateful for all those who donate, we feel good about this round, as though we have a handle on this procedure. I am also counting infusions now. After 20 infusions she risks developing an abundance of iron in her blood stream, which would mean she would need to have blood taken out every few weeks for the rest of her life. Yep feeling as though things may get a tad rougher..

Kissing her on the head, it’s all standard fare now, she asks that I leave and spend time with the children, telling me she will call in a few hours after the transfusion.  Once again against my better judgment, I realize the kids do need me and recede to the parking lot to retrieve my truck.

One hour later, I receive this text; having another allergic reaction, Epinephrine and tons of Benadryl, they have stopped the transfusion, my heart is pounding! It’s not good, I am afraid they won’t be able to give me transfusions anymore!

Rushing back to the ER I find my wife, sad, down, beaten. She is terrified because the doctors don’t know what to do. The blood she was receiving is sent off for testing, the Epinephrine is coursing through her system elevating her resting heart rate to 120-140 and she still feels sick.  As time passes she becomes weaker and weaker.  Without blood she dies, with blood and another allergic reaction she risks her lungs shutting down and she dies, it’s a no win situation.

The RN gives her another dose of Benadryl; slowly she drifts off to sleep.  A consult with Oncology in the morning is all we know. Before Jacy fell asleep she proclaimed to be very hungry and as I kiss her forehead to say goodnight, she tells me I am not allowed back into the room unless I bring her food! Food with protein!

Arriving home alone once again, I lay in bed worried for my wife. She is pale, doesn’t feel good, cannot receive the fluids she so desperately needs and it scares me. I sleep on her side of the bed…

The next day I arrive with an egg & cheese muffin sandwich in my hand! She wolfs it down and sips the English tea I also procured.  Sitting on the bed she lays in my arms and cries. She is tired of fighting, feels like giving up and states: I don’t want to do this anymore. This of course does not sit well with me. Holding her I reassure her; this is just a bump in the road all will be ok in a matter of time.  My heart is breaking, I stay strong, showing no emotion, but I am dying inside! Before our pity party can grow the RN enters the room; a plan is in place, slow down the drip (from one hour to four), a new steroid is to be used and all should go swimmingly.

The steroid is introduced, along with a giant bolus of Benadryl.  Jacy once again slips off to sleep. I watch patiently as the blood ever so slowly makes its way into my wife’s chest. Once there, my observation skills increase! Breathing-ok, Color-ok, heart rate-ok, blood pressure-ok, hives-none! All is good.  After a half an hour, the nurse talks me into going home, promising me to call me should anything go wrong. Reluctantly I do so…

18 hours later, 2 pints of blood, some platelets and feeling like a million bucks, she comes home…

Don’t ever take for granted that red fluid coursing through your veins. Leukemia is a cancer of the blood and blood is life, without blood you cannot exist. Be thankful if you have never needed blood, even more thankful if you have received blood. If you are healthy, have the time, or the desire to help someone in need. Please go and donate blood. It’s saving my wife’s life, one transfusion at a time, and for that I am eternally grateful….

blood 2