Category: Leukemia

Have you ever heard???

theycallmebetty2 Comments

Have you ever heard the cry? It’s a voice inside your head that won’t leave you alone. A mash of emotions trapped inside with nowhere to go. The voice is always there, begging, nagging, wondering, encouraging or discouraging depending upon the day, but do you hear it? Do you hear it cry? It cries for freedom, it cries for solitude, it cries for exhilaration and it cries for despair.

Have you ever told it to just shut up? To leave you alone? Do you find yourself arguing with it while driving in the car? Does it make you crazy just when you feel life isn’t crazy enough? The voice cries out, yearning to be heard but you swallow it down, forcing it into a state of mute while smiling on the outside hoping no one around you hears its needs. Have you ever heard it cry?

Over the last two years my life has been blessed. It has been hard, it has been emotional, it has been; well it has been hell. But through it all I have been blessed to talk with so many people and touch so many lives. To share correspondence with just one person walking in the very the same shoes makes every moment staring at a computer screen while typing my life to the world worth it! All I have ever wanted is to share, to explore and to help. To hear my inner voice cry.

During any time of hardship or struggle there are always those looking to find something wrong with you? Its ok, it’s not that they or anyone else is doing something wrong, for the most part they care and are trying to help the best way they know how. To intervene. We are all taught to intervene from the time we are children, but what we are not taught is what to do after we have intervened. You see I believe every person is different. People handle things differently, they handle stressors differently and it’s ok. Just because someone is not living up to your expectations of how, where, when and why they should behave doesn’t mean they’re doing it wrong. It just means those of us choosing to intervene, whether it be loved one, family or friend, need to broaden our horizons learning to accept and understand. For you see that wounded person is listening to their inner voice cry.

Maybe they have never heard it before, this inner voice and this new found annoyance keeps them up at night, or maybe it’s always been there but now that person is listening, hearing the voice and understanding its hunger to be heard. Hardship, or tragedy has turned up their hearing aids. Either way, it is that person’s voice to listen too, and they will listen to the point of acceptance or denial. During these times of trial this person may need nothing from us or they many need complete and total support, but believe me when I say, the inner voice is crying out and it’s running the show.

On a particular day when things weren’t going so well I found myself in a full blown argument with my inner voice. Long list of things to do and I felt as though I was losing the battle. In the middle of it all I glanced into my rear view mirror to see Parker gazing off into the distance with that faraway look reserved for those who have checked out from their current realm, entering the wondrous Walter Mitty world created in our heads.

I asked; Hey Park do you ever answer the voices in your head?

He smiled without breaking his gaze out the window: Why yes I do.

How many voices are in there little buddy?

Only one dad, but there is room for more!

With that, a sly smile and a gleam in his eye, my dry humored, wicked smart eleven year old boy let me know he understands.

So when you hear the cry from deep inside, don’t ignore it. Listen, that voice may be your savoir or it just may be the only one who is listening at the time. Either way over the last two years I have stopped pushing it down deep inside, acting as though it doesn’t exist, and because of that, my inner voice has been able to put pen to paper as it were for everyone to know the true, what, where, when, why and how.

Ms. Jacy is hearing her inner voice cry as well! It is screaming to heal faster! As though the Bionic Woman were trapped inside just waiting to roll out that super human strength! Yesterday we walked, climbed some stairs and tried to make it up her dad’s driveway a bit. She did great, but as with any exertion for her at this stage it came at a cost. She went in laid down and drifted off to sleep. Her medications leave her pretty well zapped. The bladder issue has not resolved itself so Platelets and blood are still the order of the day. She has an IV pump tagging along with her where ever she goes and there are 23 medications consumed three times a day. UGGHH!!

But here is the best part. She is no longer in the hospital. She is able to nibble on regular food and this makes her smile. Although she definitely does not like being told to what to do when it comes to her nutrition. We spend a lot of our days talking about the future, being thankful for our amazing families and sleeping. Yep when I am on Jacy duty I actually get to sleep a bit, something my body has been lacking for a very, very long time! It is nice to be back next to my girl.

The kids had a great winter vacation. Thank you to everyone who helped make my children’s Christmas extra special! All my love to you all! The kids of course received the best present ever when their mom came home to her dad’s house. They stayed at Grandpas from the first of the year until late last night! Spending their days with family and their mom! Everyone was so happy!

So we move onto the next phase. Weekly trips to see Jacy on the weekends and closely monitoring her progress. She has her Step-mom by her side daily. Gina left her job to care for my wife and we are forever grateful for this dedication. It leaves our entire family at ease as we know how well she is being cared for! Everyone keep those prayers coming as we have a long road to go and I firmly believe it is because of all your prayers we have made it this far! God bless you all.

Time to go, I hear my inner voice crying…..

buckle up

A Conflict of Emotions

theycallmebetty5 Comments

Conflict

Noun: a serious disagreement or argument, typically a protracted one:

Verb: be incompatible or at variance; clash:

Emotions

Noun: natural instinctive state of mind deriving from one’s circumstances, mood, or relationships with others

A conflict of emotions best describes the last 7 days. One minute jubilation for my wife’s ability to walk away from Stanford Hospital, then while walking our property, gazing upon my parents home, sadness, knowing my father will never walk out the front door again.

Seven days ago dad perished in our driveway, six days ago Jacy walked free from six months of medically induced incarceration. Seven days ago I was having one of the best shifts ever, working towards a year end that would top our best ever in regards to calls for service. Then in the blink of an eye it was over. Six days ago sadness hovered over me like a bully, pushing me, calling me names, slapping me in the face, then happiness as my eyes witness an event we all prayed would happen, but to be quite frank at times wondered if it would come to fruition. She (Jacy) stood up, untethered and walked out of the hospital a free woman to the raucous cheers of all involved.

During these last seven days I have endured the worst migraines ever, slept very little for a few days then slept and slept and slept some more! Moving about like a lost butterfly chaser, over here then over there and due to our very hectic lives have only been able to spend three days with Jacy. I have helped my mother gather up and organize her life while working on a proper way for all who knew my father to say goodbye. I have fielded more emails than ever, talked with family and friends, tried my best to let everyone know what is happening in regards to both major events and with the help of my second family (work) I have been blessed once again to have the freedom to do so!

I worry about missing someone, anyone, in regards to this constant flow of information. I have a tablet which I am constantly filling with notes to help keep me on track. It feels as though these two things just shouldn’t go together! That for some reason it is an unfair request for someone to handle this all at once. Life and death. A friend once made this statement; People die every day what are you going to do about it? She was right and my problems are so minor compared to others so I end up feeling ashamed for complaining.

But in reality, life is about turning the page.

Today, I loaded up the trailer and headed over to a friend’s house. There, my son (Jake) and I worked horses, surrounded by wonderful people. Three laps walking was all it took for every stress knot, tension spot, pain and ache I had been feeling to go away. Five laps into trotting my disorganized thoughts began to fall into line, categorized for processing. Moving into a lope a clarity overtook me, leaving me with a sensation similar to floating. Dropping into the herd to select one cow for practice I felt focused, at one with my horse. Carefully taking it from the herd and placing it into the arena to be worked a darkness lifted from within. Moving across the arena to bump, stop or turnback that cow while a young horse was being schooled and everything became right with the world. There was no conflict inside, I no longer had a headache, my body was loose and free, there were no unanswered questions, I didn’t feel alone anymore. Just me, my horse, some friends, a few cows and some good old fashioned horse work.

In that moment, I thanked my dad. Former president of Napa Valley Horsemans Association, Owner of Town and Country Western store, the man who first showed me what horses were all about and even though I ran away from them as a teenager. I came back. I felt I could continue that passion by instilling it further within my own children and hoped one day they (even the two who don’t ride) would feel thankful for it after I am gone.

In that moment I also thanked my wife, for without her constant vision of what our family could be; we would never be where we are today. She always has a way of seeing what I cannot, showing me a vision with clarity, then allowing me to pick up the ball and run. If it weren’t for her my successes would be fewer and farther between. To have been able to be by her side these last two years has been my privilege. She always tells me how proud she is of me, and then apologizes for all she says she has put us through. I see it a little differently. I am incredibly proud of her! She has accomplished a feat of great magnitude in regards to her health. She has nothing to apologize for, without her there would be no me and without me there would be no her. The way I understand it, that is what marriage is supposed to be. There is nothing I wouldn’t do for her.

Later in the day my oldest Cody took me out to the refuge where we sat in a blind, decoys in front of us we waited. Sitting there gazing at the incredible young man he has become I am filled with pride and more happiness. We only got a couple ducks in the three hours we were out there, but today it really wasn’t about the hunting for me. This young man, my son, sat there and quietly explained every move, where the ducks were going to come from, how his decoy pattern is planned using patterns or duck socialization he learned while at Humboldt. He knew every breed that flew overhead, talked about how beautiful it was where we were at, and relished at the evil cloud formations forming over us as rain poured down. In other words he spoke with passion for something that makes his world turn, that brings him happiness, which makes him relax when everything is crazy. I was in heaven and all I could think about was how thankful I am for him and lucky I am to still be here to enjoy this very moment.

So we move forward. As the week draws to a close and another sun sets off in the distance we make progress. Jacy is doing well. She continues to sleep a ton, she joked with me today that she stayed awake for a whole 45 minutes! She is surrounded by family and her children as Jess and Parker have been with her every day since she arrived at her dads! There are twenty three daily meds, eye drops, 4 breathing treatments a day, an IV line connected to a portable pump and trips back to Stanford every other day or so. None of that matters as Jacy smiles that famous smile simply because she can.

My mom is also doing well, she has reorganized the house, started preparing for the future with her own personal needs and is focused on making sure dad’s memorial is exactly the way she wants it! They have been together since they were 15, I am not sure what that means to her emotionally right now, but as she put it; I am a tough Old Italian woman, at some point I will cry again, but until then there are things to be done. She checks in with me almost every day and the boys and I have been checking in on her just the same.

I have no idea what I have been worrying about, just take it one day at a time. Right?

A turning of the page…

Goodbye Stanford

theycallmebetty24 Comments

2015 has come and gone.

Quite frankly it can kiss my ass.

If the first day of 2016 is any indication of things to come, then we are headed down the right path for change.

At approximately 4:21 in the afternoon of December 31st 2015, my wife Jacy Franceschi walking under her own power stepped out of Stanford Hospitals E1 BMT wing a mere 30 hours after 2015 gave its final shot to our family with the loss of my father.

jacy leaving

Take that 2015! That’s right suck on that! You can go to hell you rotten shitty damn year! You tried your best to take everything away from me, you tried your best to destroy our family! 2013 and 14 really had me weak and on the ropes but neither of you got us and you 2015, well you failed to finish the job! Oh you did your best to bring us down, but I’m not that easy and in the end it wasn’t even me that gave you the last middle finger for you see 2015, my wife was much tougher than us both!

Watching her smile as Heather our nurse disconnected the final IV line from her arm, seeing the light in her eyes grow brighter as each second grew closer to discharge. Packing all her belongings up, which after 6 months was an entire car load and then some. It was an amazing experience.

heather

At 4:15 she put on her HEPA filtered mask, walked to the door of her room, looked around it one last time, took a deep breath and opened her door to freedom. Walking down the hallway she was greeted by the entire working staff. Applauding and cheering with homemade signs congratulating her it was more than she could take. Tears streamed down everyone’s eyes, hugs were had and the pure love from every person who ever made contact with my wife was more than evident.

To say we felt like family while housed in this unit is an understatement. Each person there is special. To be a nurse, nurse’s aide or doctor in that unit is to be a remarkable human being. Every day I walked through those doors to see my wife I felt at ease. Never in the entire 6 months, even when things were rocky did I feel as though I really had to worry. When Jacy was transferred to Intensive care these people fought to get her back where she belonged. There was never a moment where her needs were not met and as is my wife’s personality she made sure every single person within E1 who crossed her path knew just how much she appreciated them.

As we made our way out the door, Jacy cried. I am sure she was crying to finally be free, but I also know she was crying because she was leaving so many special people behind. It is what everyone wanted for her but there is an intimacy that comes from creating bonds with your caregivers and every now and again those bonds become stronger than just the patient caregiver relationship. If you are lucky that happens with one or two, but if you are really lucky it becomes the whole damn staff!

I cannot express adequately just how thankful I am to the entire staff at E1. I tried my best to hug each and every one who was there before we left. To everyone I hugged and to everyone I missed, I love you, you helped save my girl, you always treated myself and my children as though we were your family and for that I am forever grateful.

I never want to see you again!

Just kidding we are coming by to visit!

Jacy got into the car took a deep breath and as we drove away, she sat quietly. Parker asked her if it was weird sitting in a moving car after being in a hospital for so long and she said yes. The 30 minute ride to her dads was silent. I could tell she was taking it all in, and trying her best to not be nauseous.

leaving stanford

We arrived at her dads and were met with hugs and happiness. Moving her belongings into the apartment it became official. We were finally on to stage two.

Her dad had completely repainted and redone the apartment just for Jacy. It is vibrant, comfortable and Jacy loves it! We spent the better part of the afternoon putting away her things and sorting her 23 medications that need to be taken three times a day. Uggh! Makes my stomach hurt just thinking about it! Within a few hours, people dwindled away, Jacy and I were alone for the first time in forever. We talked about the future, upcoming appointments and what it will take to care for her. She finally got a shower with no nurse, no lines, no hospital towels, and a nice soft warm bed to climb into afterwards. She was exhausted and ecstatic all at the same time.

Jacy Franceschi, my wife, my hero, the woman I love and adore, welcomed the New Year in by drifting off to sleep…..

Just the way it should have been….

2016 will bring some major new challenges to our family, but as it arrives and we travel through its first month I want each and every person who follows my blog, has helped my family or has been there for me to actually cry upon to know.

I do love you all and I don’t use that word lightly.

Whether it has been a kind word, uplifting passage, or deed done, I thank you. You are all part of my family. We couldn’t have done this without all of your support. We still have a long road ahead but it feels a little less bumpy and the directions a little easier to follow.

Here is to a happy and blessed 2016.

jacys hand

 

I am not the Grinch!

theycallmebetty4 Comments

This morning while drinking a cup of coffee I stared at our Christmas tree. It is a fine tree, six feet tall, adorned in ornaments collected over the last thirty years. A gorgeous shroud neatly placed around its base (thanks to my daughter) and presents arranged by size to give it that proper appearance. By all collective purposes the perfect holiday tree. But as you know, something has been missing.

The Christmas spirit resides within us all. It is not just expected motions or deeds, it is a humbling of one self, to give without expectations, to seek no reward other than a feeling of self-worth associated with being a little more tolerant of everyone and everything. To look upon your neighbor and say; Merry Christmas! Thankful for all that resides within your life.

My Christmas spirit has been like that funny noise in your car. You hear it constantly, it’s there, but when you take it to a mechanic for repair, it just won’t make any noise and you look a tad bit crazy trying to explain what it sounds like! Yep, I’ve had Christmas spirit I think? But mostly only when I am alone, for the second I am surrounded by people, I begin feeling a little bah humbug and no noise is to be found.

I have tried everything to make it happen! Purchased some egg nog, drank it cold, drank it hot, drank it with a little brandy and got a headache! Hmm is that my heart growing three sizes to small? Went Christmas shopping, didn’t buy anything and grew irritated with the continual rudeness of those around me! Yep feeling a little green poking through my skin. Helping the kids with our Christmas tree, felt giddy throwing the lower branches in the fire and watching them sizzle! GRRRR!!! Grew tired of our Christmas music, took some ibuprophen and drank tea while all three children argued over ornament placement which brought a strange smirk to my face!

What did it all mean? I wasn’t sure, thought maybe it was just a funk from Jacy being gone so long, but then it hit me! We were all lounging around watching How the Grinch stole Christmas and I found myself laughing and secretly high fiving the Grinch’s actions!!! Holy cow! Have I become the Grinch? Is my Christmas spirit gone for good? Am I going to turn green? Nervous with this enlightened moment, I almost had myself talked off this crazy train until Jack waddled in and jumped in my lap chewing on an ornament!!! AHHHHHHHHH! He looks like the Grinches dog! I am doomed!!!!

Replaying many actions over the last few days in my head trying to justify this new found failure the picture became clearer.

Have not moved to Mount Crumpit! Plus!

Trying hard not to live a solitary life. Plus!

My dog Jack, unlike Max is loved and loyal as opposed to unloved and loyal. Big Plus!

I have never thrown All the presents into the abyss! Hmm ok, I am allowed one, right?

And no one named Cindy Lou is pestering me with syrupy sweet kindness, although Jessica is trying her hardest! Plus!

Phew, its official, my heart is not three sizes two small!

Yay!!! I am not becoming the Grinch! So with that revelation let me put on my Santa suit, pat little children on the head while Jack and I load up the sleigh and then hand out the best Christmas present ever!

Jacy is on track to be released to outpatient status! We don’t have an official date yet, but so far it could be as soon as the first week of January barring any unforeseen complications!! Within the last week, she has upped her diet and is eating solid foods! She is motoring around the quad without much assistance, she no longer has a catheter and her bladder has chosen to bleed considerably less! She is getting stronger by the day! It is as though a switch has been thrown and her body is now trying it’s hardest to work! There is still some lung issues we are dealing with but they are small potatoes in the grand scheme of things!

So keep your fingers crossed everybody! Hopefully she will be at her dads within two weeks and we will finally begin phase two of this ordeal! Then if all goes right she will be home by possibly March? Who knows!

Strangly I feel my heart is growing three sizes to large!!

Merry Christmas everyone! May you be surrounded by those you love, may you send love and prayers to those who cannot be with you and may the Christmas spirit always reside within you.

The_Grinch_(That_Stole_Christmas)

 

 

So I sat in a barn..

theycallmebetty12 Comments

images-8

Yesterday after cleaning house, shuttling children, and spending the better part of an afternoon fixing my tractor (something I hadn’t planned on) a feeling of failure for accomplishing none of my daily goals swept over me yet again. Frustrated and tired, I fight a daily battle of just giving up. Wanting more than anything to walk into the house, climb into bed and pray that maybe I’ll just sleep until this is all over. Lucky for me my will is stronger than my lazy ass, feel sorry for myself attitude so I did something I haven’t been able to do in a while.

I walked into the barn and just sat down.

Now for some there could be no understanding of just how important that moment was for me. You see with life running at a hundred miles an hour there is one thing that has been cast aside day after damn day. My horses.

Jake is doing a good job. He is riding them when it’s not raining, making sure stalls are cleaned and they are fed in the morning. One of our borders Ms. Lisa takes care of them all in the afternoon, spreading the very same love and care I would lay upon them if I were here myself. But I am not and that is my mental meltdown.

Mornings of days past haunt me like an elderly hunting dog who can no longer hunt yearning for one more chance. Feeding, walking, riding, cleaning stalls then heading over to another ranch where the rest of my morning and early afternoon are filled with more horses to ride/train and of course working cows. To enter a show ring, scared to death and no matter the score when it’s over ride out having learned something new. A dream constantly plaguing me, that one day I will ride into Fort Worth on a good sound horse, under the lights with fresh cows. It’s all there, teasing me, feeling father and farther out of reach.

So what does sitting down in the barn have to do with anything?

It is where it all begins. We move so fast every day we forget about our dreams, putting them aside as life throws roadblock after roadblock in our path. Every second centered on the next dollar, the next moment with our children, appointments, sports and well LIFE. Our priorities and supposed priorities.

So instead I chose to stop and sit in my mares stalls. Cassie is my rock, she is a special horse for me. Most stories about people and horses for some odd reason revolve around little girls. I am sure it has to do with ponies, then unicorns, oh wait, pink unicorns and of course countless books written about a girl and her horse! Yet I have seen more than my fair share of grown, tough, grizzled men shed a tear over the loss of their riding partner, their friend. The same dynamics apply for us boys/men as do the girls/women, these animals we’ve spent countless hours riding, training, growing to know and understand become a part of you. As a boy you are John Wayne or the Lone Ranger, Quigley down under or the Man from Snowy River! As a man they are your roping partner, cattle mover or cutting friend. They become a sounding board for your day, they listen to your frustrations without arguing back and keep you in check when your emotions filter into the riding experience. These four legged beasts continually teach us every single time we are around them, whether its patience, empathy, kindness, sharing, determination or love. It’s all there every time they are around, and if they get sick of your attitude because you are the one not listening to them, well you just may find yourself looking up from the ground as a muzzle is looking down upon you. If we are smart, we slow down, take measure of ourselves and reward them for all they have given to us.

Sitting in Cassie’s pen, she snorts at me, walks a few circles as if to ask what the hell I am doing there in her space. Then realizing there was much more on my mind than just occupying her space, she walks over, tips her ears forward and slowly leans up next to me. Once my hands are upon her neck her head drops and she leans a little more. For the next 30 minutes she listened as I apologized for having not been around. She is a funny horse, if she knows you she will talk back, little grumbles here and there but for me it’s like sharing a cup of coffee with an old friend.

I looked around the barn, not at the barn, but actually looked around it feeling disconnected. I think I needed to feel that moment to help me reconnect and reaffirm that although this journey has been a very long two years, in the grand scheme of things it is only a blip in time. Leaving Cassie’s stall she whinnies at me as if to say; hey dad, don’t go! I gave her some fresh hay and moved on, heading over to my daily rider, my amigo Mr. Tank. Checking in with him was much the same, except this old boy is still a proud stud, therefore he doesn’t have much to say unless you are a mare. Then, well he is the Barry White of the barn. Walking around I checked on the other 15 horses in our barn, said hello to each one with a little pet/scratch time in between and by the time I was done, my world was a bit more centered.

I am blessed for all that I have. A great family, good kids, a wonderful place to call home and barn full of some of the coolest animals on earth. Tomorrow is another day, so we will keep trying.

Jacy is still fighting hard. As I have said before we are in for a long tough battle. We were lucky enough to participate in an E-wing Christmas party the other day and it really brought some wonderful Christmas spirit to those who attended. Christmas Carrols, hot coffee and cookies, plus handmade stuffed animals for everyone! I never tire at the caring that comes from each and every staff member in this wing. In a place where it would be easy to only see the negative there is nothing but positive all around! It is never a place one would dread to be, and I am speaking from the patient/family member side of things. I can only image how it must feel to work there, they are all truly special people.

Jacys bladder continues to bleed, we are still hoping for a miracle but know this invasive procedure is right around the corner and as Ms. Jacy says; if it gets me outta here well then so be it! Her diet has been increased again and as of yesterday I watched her eat a turkey burger!!!! It was awful and she could only stomach half of it, but what an incredible step towards walking out! She almost has a full covering of hair upon her head and she is walking a little more each day! Her lungs are still giving her trouble but the breathing treatments she receives twice a day seem to help. What an amazing fighter my wife is, she inspires me everyday.

So hopefully we continue gaining ground, nothing would make our family and of Ms. Jacy happier than seeing her at her dads sometime in January! Please keep us in your prayers.

Christmas is coming, be thankful for all you have for it is not a gift that makes your life wonderful it is the gift of life that makes it all worth living.

 

 

The Christmas Blah’s

theycallmebetty3 Comments

christmas_trees_orange_ribbon_postcard-r5a58e1522c9c4e4f8f3b31c2a0f5d6ad_vgbaq_8byvr_324

The spirit of Christmas is the spirit of love and of generosity and of goodness. It illuminates the picture window of the soul, and we look out upon the world’s busy life and become more interested in people than in things.

Thomas S Monson

Christmas this year has become about time, days, hours and minutes. There has been no Christmas joy in my heart. Each day a beating reminder there are only X-amount of days until Christmas morning. Only so much time allowed for visiting my wife in between hours away from the family at work and minutes of normalcy squeezed into moments with my children.

Christmas time, a time for years I looked forward too as an adult like that of a bewildered child. Its majesty and deep spiritual meaning associated with family, myth and fun. But it just hasn’t been the same. My inner soul has been empty. Deprived of some vison or fantasy of what Christmas means to so many. I just can’t seem to rise from this holiday funk.

Blaming our retailers is of course the easy way out. Black Friday, Cyber Monday or all cyber flipping week, whatever the case may be. Watching our countries citizens crash through Wal-Mart doors crushing others to rip a trinket or cheaply made object from another’s hand with greed and animosity does not sound very Christmas like at all. People purchasing things; things that just add up with more things to become either re-gifted things or things that sit in a corner or in a closet or on a garage shelf.

But it’s not the retailers I blame. In reality I hardly watch any TV so the commercial onslaught doesn’t really affect me personally.

The reality is it has been a very hard year, heck a very difficult two years and I know it sounds like I am whining but I feel we have been blessed surrounded by family during these many trying times. This year for Christmas I just haven’t felt as lucky. Not because of anything family related, it just hasn’t felt right. Oh we have put up a tree, played Christmas music, gone Christmas shopping, and even wrapped a few presents. But it feels like our family is simply going through the motions; add to that my responsibility to work Christmas Eve and its breaking my heart. It is what I must do, it is my job, and the kids will be fine but inside it feels as though our family is being robbed emotionally once again. There has never been a Christmas that one or both of us hasn’t been home. The bond of family broken by circumstances beyond our control.

Thanksgiving we gathered and quickly I found my way down the hill to Jacy’s room. But selfishly for me it was too short a visit, although no amount of time would have been enough I am sure. Christmas feels as though it will be much of the same; just be another blip on the horizon. Like a shooting star, there for one brilliant moment and then gone before anyone really had a chance to gaze upon its beauty. Sad…

Then, as I was riding my very own Debbie Downer red sleigh of despair I stumbled upon the quote above. Quickly realizing my own sorrow had in fact clouded these eyes. A Christmas spirit shined bright and soon the realization it had been shining every day for the last two years hit me like a gallon of egg nog! Stuck within my own bubble I had forgotten Christmas is a symbol that brings out the good in people as they unify over family, spirit, religion and love. If you are lucky and I mean very lucky you get to see that kind of love and devotion throughout the year as Christmas’ regenerating powers overflow beyond 25 days of December. It’s like a check in point for your soul.

The spirit of Christmas is the spirit of love and of generosity and of goodness.

How blind and pitiful could I be? Never in my life had I been surrounded by more love, generosity and goodness than right here, right now. Without the gift of love shown to myself and my family I couldn’t even comprehend how much harder this journey would become. To love and be loved, to be thought of, cared for and held deep in someone’s prayers, the most intimate sign of love, is indeed breathtaking. My selfish sorrow for what I wasn’t going to have within a Christmas parameter had blinded me to what I have had all along.

Family, friends and community.

At Christmas time, who could really ask for more? So starting tomorrow, I am going to give it another shot! Wipe away my dreariness, put on my best holiday spirit and pray. Just like I should have been doing all along. Pray for those who have nothing, pray for those who are in pain or suffering. Pray for those who cannot make it home, are separated or are alone either by choice or because of circumstances beyond their control. Pray for those alone because they are all they have left. I am going to pray for everyone who has given so much time and love to our family and pray for my family as we work through a Christmas without our girl. I am just going to pray and be thankful for all we have.

In my prayers I will also keep praying for my wife. It is tough being in the hospital this long. Her room is decorated but it is not the same. There is a tree with lights, bows, garland, and ornaments. But it will be her first and hopefully her last Christmas away from home and her children. We will visit her Christmas day and smother her in love so she doesn’t lose her Christmas spirit. We will pray.

Thank you everyone for reminding me what matters most.

Update: Jacy is holding her own. Her numbers are getting better and she is finally able to eat some solid food!!! Yesterday she had sausage and pancakes! That is incredibly huge! Her gastrointestinal tract seems for the moment to be working just fine. No bleeding. Her lungs have switched from viral infections in the upper respiratory to the lower respiratory. She is still having trouble breathing and needs a few breathing treatments a day but overall she is starting to sound better when she speaks. Her bladder is still bleeding and there is future treatment options on the horizon. She is growing hair and it is coming in quickly! When you put it all together it appears she IS getting better!! We are still on a wait and see plan but overall it feels different this time.

So please if everyone can continue to pray, I believe we may just see a turn around here real soon and that would lead to a very happy New Year!

Merry Christmas everyone!

 

 

 

 

In it to win it!

theycallmebetty4 Comments

In it to win it

Proverb[edit]

you’ve got to be in it to win it

  1. In order to win, or succeed at something, one must first compete or try.

 

It is 11:30 am and doc is making his rounds. Strolling onto E wing our paths cross and we have a “short but sweet” conversation in regards to Jacy’s care. Also the topic of his monthly rotation arises as he is rotating off Jacy’s care leaving his vacancy filled by the next in line. I really like this doctor although in reality my feelings have been very strong towards all 5 doctors caring for my wife over the last several months. Each one brings with them a new unique perspective and none have ever given a hint of egotism or pompous air as I have experienced in other health care settings. But this doctor in particular; well as the spouse of a patient I have felt a connection. Whether it be I just understand him better, or appreciate his no bullshit approach with me, I am sad to see him move on to another most deserving candidate.

Strolling into the room “doc” is surrounded by other staff members including our nurse (who is awesome!!) and begins discussing where we are, where Jacy is headed and then of course his plan of action for treatment. It really is a lot of the same. A wait and see approach as her body continues to find it’s balance between what her new white cells consider good vs evil. This of course is the hardest part for my wife as it leaves her with no set in stone go home date. I liken it to loading up the ship, pushing from the docks, heading out into a vast ocean without ever plotting a course. Left to time, tide, wind and wave, one hopes each morning when they awake land will be on the horizon.

Her steroids have been lowered again, she remains on antibiotics as her lungs continue to battle a nasty virus and her diet has been increased from clear liquids to GvHD1 which means some very bland, light solid foods. It is time to give her gastrointestinal tract another chance to perform without bleeding. Her need for blood has decreased although she is still receiving daily platelets and her skin is slowly starting to clear up. Her bladder remains the same, bleeding with occasional clots. This will be the very last treatment option posed as we continue praying her bladder heals itself. Ms. Jacy does has a little something she hasn’t seen in months. Hair. That’s right a light covering of hair has sprouted from her head! It is not much but it is a start.

After a lengthy discussion about her future, doc smiles and asks if she has any comments, questions or concerns to which my wife slowly strokes her scalp and through a gravelly voice replies; hey I am in it to win it!

This really should be her main motto, what she lives by on a daily basis. For as long as I’ve known her she has been; in it to win it. Whether it’s sports, coaching, teaching, exercising, competing, friendships or even falling for one really dysfunctional man. Jacy Franceschi has always been, in it to win it. There is a no quit attitude and some days more than others it astounds me. She has her moments, her doubts, becomes scared and frustrated just like anyone would, as most people should in this situation. But one look at her kids, pictures of her friends, her family, her house, the ranch and those feelings step aside allowing her true grit to appear. Of course a steady dose of Ativan doesn’t hurt either.

Jacy is the only person I know who in five minutes can make friends with a complete stranger, let alone have the love and admiration of so many people who continue to root for her on a daily basis. Walking around yesterday I realized she is the “Norm” (from the old T.V. show Cheers) of E wing. Everywhere we walk all you hear is; Jacy! Now if we could just get her to learn some one liners like Norm used to have after he walked through the door she would have it made.

Example

Nurse: looking good Ms. Jacy how’s another lap around the quad sound?

Jacy: Like this; can’t catch my breath (pretend heavy breathing) can’t catch my breath!

Nurse: you’re looking very pretty today Ms. Jacy

Jacy: Hari Krishna is a difficult look to pull off but I think I nailed it!

Nurse: how you feeling today Ms. Jacy

Jacy: Like a bear just out of hibernation; Hungry and looking for food!

Ok I don’t have a future as a sitcom writer but you get the point.

So we remain for the most part, status quo. The news isn’t overly good, but it also isn’t overly bad. In reality if this week goes well, hopefully some positive changes are on the horizon! It is all we can ask for! So as your week goes forward and little struggles arise just remember this.

No matter the challenges in life, we should wake up each day, put our feet on the ground, be thankful for all that we have and walk out the door ready. Why? Because every day we should be “In it to win it”!

Just ask Ms. Jacy…

un

 

 

 

 

 

 

Thankful

theycallmebetty1 Comment

 glad that something has happened or not happened, that something or someone exists, etc.

: of, relating to, or expressing thanks

As people are winding down their 26 days of being thankful prior to Thanksgiving, I ponder. Sentiments aside, these one, often two line quips of gratitude at times feel forced. You know as in; I better come up with something, I have 18 days to go and I wouldn’t want my friends to think I am a thankless idiot! While other lines of recognition feel genuine and heartfelt, leaving one to pause and reflect, often times a nod of approval comes forth as we connect through their honesty.

I decided in late October this was my year to compete in this annual tradition. 26 days should be simple enough, Lord knows there is plenty for me to be thankful for! Being one who thrives on a challenge it appeared as though I would have no trouble. A comfortable location was established, pen and paper solidly in hand when it occurred to me (quite arrogantly I might add) writing down my overwhelming gratitude in one bold sitting would be of no consequence! Just a man, his love for everyone, gratefulness for prayers answered and the watchful eye of an entire community! It would be as my son would say; easy, peasy….

After 30 minutes I found myself with head firmly placed in hands, everything I wrote sounded trite, as if I was pandering, pleading for recognition in my sincerity, my “thankfulness”. Verbs, adjectives nouns and pronouns all clashing together like a 60 car pileup on Interstate 80 in dense fog! Of course the metaphor being fog, as in the soupy, dense thought process consuming my brain! Writing then scribbling, scratching then tossing it all aside! Sitting at my desk going through page after page of printer paper was incredibly frustrating! Of course even more frustrating was the moment I realized; I WAS SITTING AT MY FREAKING DESK! WHY IN THE WORLD WASN’T I ON THE COMPUTER USING WORD!!!

Phew sorry I had to take a break and return my heart to a reasonable rate. 

26 days of being thankful may as well been 2600 days describing the taste of peanut butter! I was stuck and stuck good.. Then like the sun rising in the east, it dawned upon me. I am thankful everyday even when at times I may not show it. So if I were too, let’s say, write down my feelings in regards to being thankful, maybe and this is a big maybe now, maybe I could try expressing myself in one single written act of thankfulness? No little one/two liners or single paragraphs although there is absolutely nothing wrong with that, it just isn’t my style. One written piece that says it all by getting to the root of my thankfulness, no extra explanation, no need to wonder where I am going with it and no publicly being thankful my cat still uses a litter box! (That was day eight on a friend’s page) Although that is a giant plus! Really!

Better late than never! With one day left to go Im diving in head first! Wish me luck!

14 years ago a woman entered my life, she brought with her light. For you see at the time my life was somewhere lost inside a dark tunnel. I was alone, trapped inside myself, cold and filled with hate. Life was not what I had expected, or even planned and I wondered how I would ever be able to share the joys of life with others when there was no joy in mine. For many years prior my personality was a fabrication, a way to hide my insecurities, my short comings. The person I had become over the years I didn’t particularly care for and in reality if I had met myself in an alley somewhere I would have probably kicked my own ass. I yearned for a way out of who I was and what I had become, but did not know how. Stubborn, jaded and incapable of recognizing it was not the world who had a problem with me, but me who had a problem with myself. It was tough to even look at myself in the mirror each morning and I usually hated the upcoming day.

The light walked through my door and she knew, she knew that very minute I was trouble yet there was something more. She knew despite fighting every urge she had to run that this was where she needed to be! She braved the loss of friends and family because in her heart and soul, even though it was confusing and it hurt, this was where God needed her most.

It was a tough decision to love me. She could have done much better, she could have had a better life financially, and she could have found someone with the same values and views right off the bat, but she listened to that voice that said to trust in him. She listened even though at times it frightened her to do so. Sometimes the whole thing was just too much and she would run home for a week or two. After careful reflection she would return, renewed ready to follow this path.

I was no easy catch or treasured prize! In the beginning it was hard, very hard. My angry, one sided, opinionated views were difficult to take, but she took them. She would fight back, never relenting until the hardened crust around me began to break. Even during some of the toughest times she would say, I am never leaving you, never giving up, I know who you are James and I know this will all be ok. I love you.

In the end she was almost always right, I didn’t have to like her methods, but knowing she loved me somehow made it easier to accept my faults. Having her smile at me, give me a hug then let me rest my weary head on her shoulder after a day or two of kicking the ugly side of me to the curb left me feeling protected, needed. She had become the light, carefully leading me from the dark tunnel that was my personality and my life.

For 14 years she has stayed by my side, we have built a life like no other. We have four children who have also benefitted from her stubborn way of doing things, her take no prisoners attitude. One of our children is a solid man ready for the world and three others are following suit faster than I care for! She is the center of our family, the nucleus; from our ranch to the animals that inhabit it, there is a piece of her everywhere you look. She is the best of friends to many, a teacher who loves her students as if they were her own children, a hand that reaches out for you when no one else will with honesty, generosity and love. She loves her town, her church and all of her church family. She has shown our family how life is sweeter when you give of yourself and that receiving Gods love is so very important. She believes everyone and everything deserves a second chance. I used to get upset when she was mad and I never really knew why. Everyone deserves to be mad at some point, I mean no life is so perfect that you are happy all the time. But when she smiles, when she laughs, when she looks at you with that relaxed caring look, you realize you hate to see her upset or mad because it is wasted emotions in regards to who she really is, to what she really provides! To see her inner light as it shines over all who reside within her love.

I really don’t know what I would do without her, she taught me how to accept myself. I still struggle daily with old emotions and it’s hard to not have her here on a daily basis. But inside, when I get frustrated or mad, or feel the “old James” fighting to emerge because it’s the easy way out, I think about the strength of her love. Today when she hits rock bottom with treatment or ongoing issues with her body she looks at me, knows just how much I love her; knows how thankful I am and I’d like to believe it drives her forward. She has given me the strength to be loved and to whole heartedly give that love right back. To shine.

So what am I thankful for this year? Well unfortunately it’s not going to take me 26 days to explain it. (And remember there is nothing wrong with that)

It only takes one sentence.

This year I am thankful the light in my life is still able to shine.

Happy Thanksgiving to everyone in my life, I love you all…

 

thanksgiving-gratitude

 

What a difference a day makes

theycallmebetty2 Comments

What a difference a day makes

Twenty four little hours

Brought the sun and the flowers

Where there used to be rain

~Stanley Adams-Maria Mendez Grever~

 

Yeah it’s a tad corny I know but you see yesterday Jacy and I had a meeting with her doctor. Now for the last 48 hours work has been my home. Any information received was met with fret as no alternative exists for me in regards to any form of action. In reality there is no “action” to provide for as hard as it is to abide, my wife’s wishes remain the same. Take care of children, ranch, work and you before coming to sit by my side. Being a good husband I try my hardest to fulfill her requests.

I digress… The last 48 was met with daily updates in regards to a nasty gastrointestinal bleed (yes the very same one we have been discussing for the last 7 days) which has grown considerably in volume since the last time we prayed for it to stop. Within the last two weeks another conversation has repeatedly taken place in regards to Jacys care should this bleed become unmanageable in combination with several other issues that keep rearing their ugly head! Not a very comfortable conversation to have.

Now back to the GI bleed. It just would not slow down! Her volume increased, several options were discussed and throughout the last 48 hours her intake of fresh blood and platelets expanded to a point where it became prudent for an offensive stance as opposed to continuing with the defensive wait and see position. Several phone calls were made, and I being trapped within the four walls of one second home (my fire station) began pacing the floor. Talk in regards to urgency of care, ICU and paperwork which appeared unclear to some being properly disseminated so there would be no doubt as to our wishes should this bleed progress with no option for repair.

Nuclear medicine was advised and late Wednesday evening she was shuttled down for a radionuclide scan. A very small portion of blood was drawn then mixed with radioactive isotopes. Once the two were “shaken not stirred” they were re-administered into her vascular system where a machine rapidly captured pictures using gamma rays emitting from her blood to track, trace and locate any bleeds. By 10pm no conclusive evidence had been found. Early Thursday morning after checking her numbers her doctor decided another round of photography was in order as her output was increasing. By noon we had our answer.

Arriving to Stanford at 1130 my mind was weary from 48 hours filled with negativity. You know the very demons I have written about prior, taking hold of common sense and reality, forcing you to dive into the deepest most negative places your mind can go. Yet, I did what I always do once my shoulders pass through those gigantic, elegant glass doors. I stood up straight, put on my best poker face, took a deep breath and walked through as if I hadn’t a care in the world! If only it were true.

I hadn’t been in the room long when Jacys doctor came in. Prepared for the worst, simply because that’s all I’d thought about for the last 48, plus after seeing how much better Jacy appeared I just knew her appearance couldn’t possibly be indicative to her reality. Doc greeted us both, sat down and proceeded to give us a general, sanitized run down of where we were in regards to status. You know, like that little teaser they print on the inside cover of a book that leaves you wanting to either buy it, mull it over or throw it as far as you can. Afterwards he took a deep breath, started talking quickly and confidently while throwing it all on the line. Something I truly admire about this man. Basically; Jacys body needs to start working! They located several bleeds in a section of small intestine and though many options had been tossed around from surgery (although there was some confusion as to where that little rumor started) to an endoscopy procedure where they would cauterize or put a spring style blocker in to slow and stop the bleeding, to continuing the current course which would be platelets and more blood.

This doctor is a fan of giving things a chance. He circumvented a solid push to have Jacys bladder treated with chemicals to stop it from bleeding. These chemicals would have left her incontinent. Why did he do this? He felt even though her bleeding bladder had gone on for much longer than need be, there were other pressing issues and he just wanted to give her body a chance! Result? Clear urine for the last two days! What, what!!!!

Now with many pushing for the invasive endoscopy procedure he stood his ground once again prefacing with: I will do whatever your primary doctor wishes, but you are my patient this month and I am going to fight to give your body a chance! All we need is blood, and we are the largest user of blood anywhere, believe me there is plenty on hand!

When asked how Jacy felt about this she stated that since yesterday the amount of blood coming out feels as though it has slowed down. Her nurse confirmed this to be true, in fact 1/3 as much fluid had been collected during the same previous period of time! To that we all smiled, he (her doctor) smiled the biggest and proceeded to cover some finer aspects of his plan to which we all happily agreed! So we proceed, more blood, more platelets, more waiting and more prayers! I believe not only is she in good hands with her doctor this month, but that something else might just have something to do with it!

What a difference a day makes? Yes this catchy little song popped into my head. I am a sucker for old music and this hypnotic little 1959 tune just naturally stuck. As her doc walked out the door he patted me on the shoulder as if to say; I got this, quit worrying, and relax for a while. After speaking with him, feeling the confidence he exudes in combination with his very straight forward and at times humble explanations what else could I do?

images-1

 

Sunday

theycallmebetty12 Comments

Sunday

 

We gathered around as “wine” was passed about along with bread torn away from its crusty fibrous center. It was Sunday and as with any Sunday there are only a couple of places where a majority of civilization spends its time. Church, Football, Baseball, Soccer, NASCAR, a child’s sporting event or surrounded by family and friends. Yes I know there are those who work on Sundays as well but it’s not my fault we have allowed our society to create this thriving need. Plus that is a topic for whole different rant.

We were lucky enough to have nailed two of those listed. As the entire Franceschi family came into Stanford to visit their mother, Ms. Jacy, we were greeted by a much welcome visit from the Pastor of our church. It had been awhile since we were able to go to church and with Jacy being at Stanford for 5 months now Pastor Cathy was a welcome sight indeed! Saying our hello’s we laughed, hugged and welcomed her into Jacys little room in E wing. After some conversation it seemed like no better time to get a little serious and read a few psalms, rejoice in each other’s glorious presence and take communion. It was Sunday after all. So the “wine” was passed, the bread was torn (Parker exchanged his piece for a bigger one, Hmm gluttony?) and quietly, spiritually we took communion. After saying the Lord’s Prayer I was filled with so much inner joy, my heart felt overwhelmingly full.

Jacy and Parker

It is hard getting all the children to Stanford at the same time. Cody has a job, Jake runs like his dad in three directions at once so Parker and Jess are always the easiest to corral for a little mother child visitation. On this Sunday though everything fell into place. Cody was ready to go the second he arrived home from work and the other three quickly followed suit. Our afternoon was filled with talk about Christmas lists for the kids, discussions about grades and the condition of all our much cared for animals. Jacy is longing for home, it is in her eyes; she misses every little thing about the Blue Sky Ranch from riding horses to weeding, from cleaning up hay in the barn to playing with her dogs but most of all she misses cleaning stalls. Good hard work, where the only reward she receives is watching a horse stroll in, sniff the fresh shavings and flop on their side for a good roll! Job well done.

Cody and Jake went for a walk about the Stanford campus while the four of us watched a movie together. Pastor Cathy was still fresh in my mind, so my quiet voice was whispering a little prayer to God. A prayer of peace and thanksgiving for this very moment my eyes were a party too. Seeing Parker curled up in his mommas lap while watching the movie; I knew in my heart it was just what Jacy needed. A peaceful respite from being poked, prodded, tested and manipulated by strangers. Just a mother surrounded by her children with the littlest one in her lap. Nothing could be more heavenly.

Upon returning an hour and half later the boys regaled us with tales of exploration across the massive Stanford campus. The place was more than they expected and Cody even quipped; why didn’t you take me here when I was looking into colleges? Yep he thought Stanford was pretty cool and I would have to agree. Of course I also couldn’t let him dream to big without reminding him of the annual tuition to attend such a revered university. (Roughly $64,000.00) Of course his retort was sharp and to the point. Uh scholarships??? I cannot tell a lie, for a moment I pondered my son attending Stanford and it made me a bit giddy! But then really it becomes about me being able to walk around stating “my son attends Stanford” and well that just sounds pompous.

A few more laughs were had at Jakes expense which is pretty normal in our family and then it was time to go. The kids all said their goodbyes, kissed their momma, stripped off their gowns and headed to the family room. Jacy decided she wanted to go for a walk while I was there and we made two laps around the quad before she became too exhausted to continue. One more goodbye was had by all the children and I slowly escorted her back into her room.

Saying goodbye is always the hardest part. It just feels so wrong to leave this woman who I adore alone in a room without me there to take care of her. But we do it time and again. It is always a long drive home for me. My brain never shuts off, I feel like I am abandoning her and it tears up my insides. Sunday was no different, with the exception that I actually smiled most of the way home knowing we had not just a good day together as a family, but a great day filled with love, God and all the trappings (short of a home cooked meal) a Sunday should bring.

For moment in a very long time; life was good….

Jacy and family