Tag: Stanford Hospital

I have become afraid.

theycallmebetty2 Comments

I over think things, I really do. I try my hardest not too, but I am the guy who lays in bed all night long thinking, and thinking, and thinking, until I pass out! Of course then I wake up in the morning and start thinking about whatever the hell it is I was thinking about before I went to bed and thus the process starts all over again! Phew, I had to think about that for a minute..

So here is my problem.

When I think about Jacy, most of the time I no longer see her in my mind sick, in pain and getting weaker by the day. My brain for some reason has me grieving our life prior to Leukemia. You know, she is a mom, I am a doting husband, we date twice a week, have rodeo, Criners arena, Sugarland and lots of bbq’s with friends. Also on the flip side my brain is inundating me with Stanford visits and Kaiser Hospital runs/rituals acquired over the last 5 years. So that seems pretty confusing doesn’t it?

Let me rephrase or clarify the upper statement.

It has come to my attention that if I am in a crowd, or shopping, or any place there are people, I begin remembering moments from another time and Jacy being with me, or have memories of us doing things together in conjunction with “whatever” activity I am participating. She is healthy, and so damn beautiful and it crushes whatever spirit I had towards the activity I am trying my hardest to participate in! I begin looking for her desperately in the eyes of every woman that passes by me, every woman with her back to me, I search and search and I can’t find her in the crowd so my heart rate goes up, then I can’t breathe, I am afraid and just when things seem like they couldn’t get any worse they do! I find myself running for cover trying to hide so no one can see I am falling apart on the inside! Then it just happens, and I can’t stop it! I cry.

Crying is absolutely ok. I am rational enough to know that, but I don’t want the attention. I simply want to do so without anyone checking on me and when you are in a large crowd with nowhere to hide that simply is not possible. So I try swallowing it down, hard, which just makes it worse. Because as the tide comes and goes, if the waves are held back to long eventually one massive wave will break onto the shore.

Yeah picture that! So fun.

My face hurts, my chest hurts, I swear my heart is going to explode, I start sweating, I can’t breathe and then it happens, over and over again, her face flashes, events flash, her smile, her kiss, her hand in mine, I can’t fucking take it!!! I can’t see her and my head starts spinning!! Then just like that, it’s gone. She is gone and it’s like someone lifted it all off my shoulders, until something else sets it off and it starts all over again.

I went to Nevada City today to celebrate Christmas with my son since I really haven’t been feeling it at all. I was excited, he was excited; we walked past the entry sign and into the crowd. The deeper we went I felt the tightening in my chest. I began searching. For her…

Parker shopped away as one woman after another passed me and although no one even remotely looked like my wife there was something, some kind of resemblance; a dress, the shoes, the way she walked, a smile. Stupid really, but it only furthered my need to find Jacy! I become irrational, saying things to myself like; She would have loved this place, the smells, the people, oh my, she would have been talking to every stranger she could in every shop or booth! I knew she just simply had to be there! She couldn’t be dead there is no way my wife, the strongest fucking person I have ever known could be FUCKING DEAD!!! WHAT THE FUCK!!!!

Turning the corner looking for a place to run and there in the window of a shop is a pair of shoes. Not just any pair of shoes, but clogs, her favorite and they were decorated and colored and she would have loved them and I would have bought them for her for Christmas because we loved Christmas, and church and Christmas eve pajamas and snow balling our friends and FUCK, FUCK, FUCKITY, FUCK!!!!

But see it doesn’t get better either.

The second part is when I am driving. That’s when I run through five years of hospital rituals, three years of Stanford Hospital rituals. Sneaking her hamburgers when she wasn’t supposed to eat them. Playing words with friends for hours, watching Survivor, quite literally ever single season-twice. Spending all those moments together with machines beeping and nurses coming and going and holding her hand through it all. Listening intently and calming her down as she tells me to please murder the next nurse that puts her on bed alarm! Telling her I loved her a hundred million times, not because I had too, or was afraid she wouldn’t know but because I wanted too. The way when you are first in love and you say those words it feels magical. Yeah like that, every time. Even when things weren’t going well. That’s the way it felt for me. I haven’t heard those words back for 50 days now. It is killing me inside.

I had to go to Kaiser the other day for me. It took me 15 minutes to get out of the truck and go inside. I even parked in the wrong place because I was on auto pilot. Once inside I wanted to run away. I never want to be inside that building again. Either of them. It’s irrational and I know I am going to need to get over it but I can’t right now. Every corner I see her, in a wheel chair, waiting for me to push her into an elevator. Or sitting around the corner waiting for a blood draw. I see the same faces of the same ladies working at reception who helped her and I pray no one makes eye contact with me. I know they won’t know who I am, but if they look at me I will feel like I am supposed to walk up and say; hi good morning, yes Jacy Franceschi at 10:30-04039018. Thanks yes I know where the paperwork goes.

If I drive towards the city it’s all I can do not to head towards Stanford. Again partly on auto pilot and partly because I still feel like she is there and this is all one big misunderstanding! There is no way she is gone, there is no way she is dead; there is no way she is in this wood box sitting behind me! The summation of her physical being bound into a bag with a copper tag and number that have the earrings she was wearing taped to it! There is just no way!!! They said it was a 10/10 match!!! She had the very best odds. They said that, I heard it!! They said she was going to live and there was only the slightest of chances things could go wrong! I heard that too!!!! They fucking said it!!!

I want someone to wake me from this horrible dream. PLEASE!!!!

Listen, I know they said a ton of other things as well, but it is just where I am right now. I don’t blame them, everyone was amazing to us and our family.

I just want my wife back! Can I go to heaven just for the day? (yeah like the song) Just so I can make sure she is ok? It was my job for so long it just feels so unfinished, and yet that is exactly what it has become. Just a day so I can come back and take care of the kids knowing she is all right. That’s all I ask..

Oh well, I guess I will just have to assume.

Listen, I know it will get easier over time. I don’t know how long that is going to be and really I don’t care. I loved her for 17 years, she was my very best friend and I will love her still, no matter where life takes me. I will never quit loving her, or the memory of her, I just wish for a while, I could turn my brain off and quit being afraid.

Sorrow is a bird…

theycallmebetty6 Comments

Let me preface today’s writings with a statement: I promised my wife I would keep writing, telling the truth and never masking it or watering it down for the sake of others and that if our story and struggle could help just one person understand they are not alone then we have done our job. Well the “we” has turned to me. Just me and it is daunting to be a me, not a we. So please share/like/subscribe to this blog share our story with everyone you know, because if many can be reached, then maybe the “me” can become a “we” again.

“Sorrow is a bird that sits in the rain. Hunkered down on a branch you see it from the comfort of your window. You think; how sad, that bird is cold and rain soaked beyond its feathers there must be something I can do. But there is nothing you can do, for you cannot help the bird because the bird knows what its up against and understands it must deal with what life has thrown it’s way. There is nothing you can say, for doing so may cause it to panic, flying deeper into the storm, you simply must watch painfully as the sky rains down upon it. For a time the bird must remain sorrowful.”

~Betty~

I am currently drowning in a sea of sorrow and tears.

The darkness in my heart holds me down under its weight. Each day it is becoming harder and harder to leave the house for any reason.

Everywhere I turn I see her face, each place in town or a restaurant or the grocery store or, or, or it never ends. Look there is a grey Honda Odyssey in the parking lot, maybe she is inside and I can surprise her? You never realize just how many grey Honda’s there are out there until you drop kids off at school. You also don’t realize how fast after the one you love is gone, free from all the pain and suffering that your mind takes you back and leaves you with images pre-Leukemia.

There is no reason she would be parked here at the grocery store with the Honda. She hadn’t driven in over 3 years. But that is the crazy game your mind plays with you. It sucks! It really sucks and it hurts a lot!

Lately my mind has been playing the cruelest trick of all. Reminding me or telling me how inadequate I really was and how much better I could or should have been.

Over the last few months, I had really hit bottom when it came to caring for myself. No sleep as it took all night to care for my wife and during the day I had children, ranch and pick up/drop off duties. Plus all the house chores with cooking and cleaning. Of course then there was doctor’s appointments, shuffling her to her dads, oh yeah and then for 48 hours a week I was a kind, caring firefighter for the citizens of our little community. I really was a real life walking zombie.

I found every excuse I could to stay away a few minutes longer when I got out of the house, (I rarely left her alone and only left when she was lucid) to get a break from wet beds, pee on the floor, picking her up because she was suffocating herself in her sleep due to the high number of drugs she was taking. Listening to her tell the same story over and over again as I simply nodded my head while coldly scrolling through my phone because I knew she couldn’t see me due to her GvHD induced blindness. I hate myself for that, I hate myself for every minute I spent away from best friend. Not because I really didn’t want to be with her, but because I just needed a minute to breathe. It was selfish and wrong, I will hate myself forever for not spending those moments engaged or by her side.

What makes things even worse lately is a few things.

My brain also won’t stop replaying every little thing she said to me over the last few months which currently leaves me hearing things I didn’t hear before due to mental exhaustion.

Jacy was starving for my attention! Not the attention I was giving her, the kind of attention she desperately needed. Approval.

I should have thrown the chores to the side and laid next to her more watching movies.

I should have cuddled her more.

I should have spent more time listening and less time talking.

I should have told her I thought she was beautiful despite what GvHD had done to her body. She hated the way she looked and I told her I loved her no matter what, and that I always would which was always followed with a kiss. What I should have said was I think you are beautiful, over and over again.

I should have never left her side even for a moment.

I miss her so badly and just the thought of her sweet face makes me cry. I can’t sleep, not really a fan of eating anymore, I am down to one meal a day. Thankfully I am not drinking on a regular basis or alone. I tried but it just made things worse, so very worse.

I am angry at all of you.

I am sad and angry that we won’t celebrate our twentieth wedding anniversary. I had big plans for that one. Watching all of you happily celebrating your anniversaries and birthdays and love, it just makes me angry at God for taking my best friend away. It’s not your fault, but it stings and I don’t understand why the people I love keep dying.

If one more person tells me to find the positives I swear to Christ I am going to punch someone! There are no positives! I cannot for the life of me understand why? Why are there so many pieces of shit walking this earth and the one human being who showed me how to believe in love, humanity, and selflessness is taken from this world in such a horrific way! I watched her die!!! I can never erase that image from my fucking head!

Jacy would always tell me she knew, she always knew that she was supposed to be with me. That god had guided her way and always been the strength in her life!

So was she sent here to rescue me? Was she my own personal angel and now the time has come for her to go home and if so, how could God leave her to suffer so much before she went? I just don’t understand that either. She was in so much pain, every single day, she lost her sight, couldn’t breathe, had to live with broken ribs that wouldn’t heal, always felt like someone was squeezing her chest, retained water like a camel, lost all bladder control and couldn’t walk to the front door without a full blown panic attack!!! This poised, loving, caring, mother of four, church going, humanitarian and god loving human being was left with no dignity at the end!

Then I think it was all the medications that killed her! I mean it’s what I do for a living and yet we blindly follow the doctor’s orders! Most of her medications caused many of the problems she was suffering from under the guise of providing relief!

Or maybe I am just looking for blame because I am mad, because I will never press her cheek against mine again, feel her whisper in my ear, hear I love you. You know that really hurts.

Oh and she won’t be there for Parker and Jessica’s graduation, all the kids marriages and forth coming grandchildren! She won’t be there for mother’s day, no longer around for everyone’s birthdays all the things she enjoyed about life.

Don’t even get me started on Christmas!

Yeah I am a ball of fun!

What do I do? How do I go forward? Each day is getting harder, not easier! I stare at her pictures and want them to talk to me so badly!!! About anything!! Hell I’d even like to hear about the last episode she watched in regards to the Real Asshole Housewives of any fucking stupid city!!

But the pictures don’t talk, they just remind me of a time that was and will never be again. They hurt my heart, they make me wish I had one more day to say I love you, one more day to apologize for any day I was short with her or not on my game, one more day to hear her tell Cody to have a good day on the way out the door or have her tell me Jake called her and it made her day! One more day to hear all the dirty little gossip she learned from Jessica after an hour long bed and dumb television session between the two of them. One more day to laugh as her Parker watch a movie together and they both make silly comments to each other in regards to the flick they would be watching! One more day to hear about how the dogs all piled on top of her, scaring her but at the same time relishing in their doggie love. One more day to hear about how when she was stronger she was taking me to England to show me all the cool things she loved about that country. One more day to hear the story about how she became a firefighter, which of course led to us meeting and how she counted those blessing each and every day.

But of course I know if I had one more day that would lead to me wanting just one more day.

I see her walking out of Stanford triumphantly after 8 months. Crying tears of joy because she felt like she had a chance to live again.

I see lots of things, I am reliving lots of things, I am dying inside over lots of fucking things over and over and OVER AGAIN!

I really am having trouble envisioning a world without my wife in it. It just doesn’t seem fair or right, or both. Not completely for me either, but for all of you, and to the world. She had such big dreams that would have benefitted so many. I would have been so proud to help her see her dreams come to fruition while continuing on as the Montessori kids used to call me; Mr. Jacy.

And thus none of this will happen and here I am on a capsized boat named life. I have no life vest and I am drowning, slowly.

Drowning in a sea of tears..

I know you can’t say it back. But I love you Jacy..

30 Days….

theycallmebetty3 Comments

One month ago today my best friend, partner, hand holding, cheek snuggling, mischievous prankster, mom to our four children and all around goofy badass human being of a wife died.

That sounds so strange.

She is dead.

I waited all day to write about you Jacy, because I wasn’t sure how today would play out for me. I was a mess. I put on a good face, went and did something fun with dear friends, our son and horses. But the drive home was painful. I almost sobbed in Burger King as I recalled all the times you would mess with me over your order, hoping I would screw it up and you would get a good laugh at my expense. And for some reason every song on Pandora or the radio was either one of your favorites, one of our favorites or a correlation of both in conjunction with some special time or setting. I struggled to pull into the driveway and as soon as we unloaded horses found a reason to disappear again so no one would see me so damn sad.  Please forgive me honey…..

I know I have said this before and I will say it again so bear with me.

I have never and I mean ever gone this long without talking to her. Listening to her take on things, accepting or rejecting advice given or received from each other. Hearing her say; I love you in one of a hundred different ways that always reaffirmed our commitment to each other regardless of time or place. The darkness, cold and emptiness is, well, I guess it is just empty.

I know for a fact Jacy would kick my ass for behaving this way. She made me promise I wouldn’t and yet it is so hard to keep that promise, I am failing miserably. Sobbing for no reason, pining for her love as if she is going to walk through the door at any moment! We always knew this was a possibility and over the last few months it became more of a reality. Of course how could it not become more of a reality when every doctor during the last two months would ask; Jacy how long do YOU think you have?

Being Jacy she would answer without hesitation she was living long enough to see Parker graduate high school. She would then proclaim her forgiveness to me as that meant she was willing to check out after that milestone. I would smile and say it was ok and then both of us would gaze upon her physician wondering what the real projection might be. Her twitching like a nervous cat and me staring stone faced.

Within the year.

That was the answer we were greeted with and it never set well with her. How could it! Someone just gave you your official life expectancy! It stung even more because, well because this was Jacy!!!! If you knew my ass kicking, never take no for an answer, spin instructor, teacher, YouTube sensation and cheerleader for all wife, you knew that if anyone could beat any doctors expectations it was her! Right??

Ladies and gentlemen that is where the rub lies for me.

I know I have mentioned this before as well, either in the blog or in person, not sure, things have been really weird for me mentally lately. But here goes. The rub for me is I bought into this bullshit!!! I was so secure in my knowledge of my wife, her strengths and weaknesses that I seriously ignored what the doctors said and felt like she could, no dam it! She would make it another four years!!! She conned me and she conned me good!!!!

She cried in the elevator that day after hearing this for the second time, this time from her Kaiser doctor. I couldn’t even muster a “there, there honey” or hold her because I was so in shock! I was in shock we were actually coming to this point, I was in shock my wife who would never, and I mean ever bow to any such flabbergasting, erroneous bullshit prediction was believing it must be true. I was in shock that a day might actually come where she wouldn’t be by my side. I just stood there, in shock, as my wife wept and as the elevator doors opened, she hid her face so others wouldn’t see. We moved slowly to the car, I helped her inside, hugging her on the way down. I put away her wheel chair, slid into the car and did what I always do, tried to crack a joke. It didn’t go over. Right there, right fucking there I should have seen it, but I didn’t! Jacy was giving up.

That was 38 days before she slipped away from us.

I had bought into the super human, wonder woman, I am stronger than anyone on this earth bullshit, that my eyes became covered with blinders. I no longer recognized the worsening distressed look upon her face, the increased swelling and lesions that covered all areas of her body. I no longer heard her struggling to breathe harder than before, I simply treated it more aggressively and moved on. I no longer noticed she was wetting the bed any more or any less and trying her hardest to focus on small tasks she previously handled fairly well with her limited vision.  I no longer…. Not because of a lack of empathy, exhaustion or care, but because as I stated; I bought into the bullshit! This was Jacy and damn it, nothing and I mean nothing was going to happen to her!!!

Instead I became a quiet cheerleader, blinders on, hoping our tough as nails girl was actually doing better than she let on.

Don’t worry about the fact you wet the bed honey, I got it.

No I don’t mind cleaning the toilet chair, quit apologizing, I love you and this is what it means to love someone. Proud of you for making it here on your own.

I have all your pills figured out, no more overlapping, I think we can manage your increased pain without issue, you just need to trust me.

I know you don’t want to eat, but I made something really tasty and it has Marmite!!! Come on, just try a little, you can’t take your pills until you eat something good. She did love my cooking and that is one memory I will always love.

Are you cold, here is a comforter?

Are you warm? Here is a fan.

You want all the dogs on the bed, no problem.

I washed all your clothes, they are folded and placed on the couch; I will help you pick something later. Yes you can dress yourself but I am going to be here in case you need me.

And on and on and on..

With that, she kept going, and her effort every day made me feel like I was helping, like she had some form of independence which I felt she needed to keep mentally tough, to get stronger to win! But unfortunately the increased medications, increased antibiotics, the increased sleeping and loss of mental acuity all spoke volumes to just how wrong I was. My blinders were strong.

The reality is it didn’t matter what I did, GvHD was winning, the doctors knew it, those close to our family, including our immediate family knew it, I recognized it deep inside I suppose; I just chose to ignore it. To keep working hard, hoping she could just keep going a little longer.

Now here I am, alone.

It is such a dilemma of spirit.

Like I said, I know for a fact she would be mad at me for carrying on. But I can’t help it. I miss everything about her and now I am selfishly missing everything we lost before she got sick. I was on auto pilot for so long that it never occurred to me (even though I knew and thought about it all the time) how much I missed date nights, walks in the park or on the property, hiking in the woods, camping, boating, campfire ghost stories, taking in new dogs from the SPCA, cooking together, drinking wine and beer together, watching fucking survivor together, sitting in bed talking for hours, riding horses up Lagoon Valley together. I miss doing everything with her!!! I miss it all and on top of that I can’t even FUCKING TALK TO HER OR HEAR HER VOICE!!! ARRRRRGGGGGGGGG I’M SUCH A BROKEN RECORD!!!!

I miss it all, all of it, every single last messy bit of it!

Nobody ever deserves this but she really never deserved this! She never did anything wrong to anybody, she helped anyone who she felt needed it or asked. She did nothing her whole adult life but give, give, give. She radiated an energy that just can’t be explained and the minute you met her you felt it, you bathed in it and you knew instantly she was something, no, someone special.

Jacy you quite simply were the best human being I have ever known and I am so lucky you were mine for almost 17 years. My life will never, ever be the same.

I’m rambling, so I will wrap it up.

It’s been thirty days since we said goodbye, I feel you inside me, I feel you watching me; I have loved having you visit me in my dreams.

I just wish you could come home, wrap your arms around me, tell me it was all a dream and it will all be ok. Please? I’m scared.

Jacy I love you…….

365 days

theycallmebetty7 Comments

One year-365 days

The day before yesterday I awoke to my phone buzzing incessantly on my leg. I had traveled back to the firehouse for an emergency recall as emergency units were fighting a stubborn structure fire and additional manpower was needed for daily operations. After changing into my uniform, checking the operations board, determining who went where and why. A moment came where I dropped into a chair to catch a minute while enjoying the air-conditioning. It is the last thing I remember. That is until my phone started buzzing upon my leg.

Answering it, my wife started talking and I quickly realized I had no idea what she was saying. Not only did I have no idea what she was saying but I didn’t know where I was, who I was, or why I was sitting in a chair inside the firehouse. I panicked and thought shit something is wrong, why is she calling? She is at the hospital what has happened? Is it bad news? Is she ok and once again, HOW THE HELL DID I END UP AT WORK!!! Had I been there for a couple a days? Was this my shift? CRAP!!! I was lost..

The entire time my inner self is freaking the hell out, my wife is simply asking me when I am coming home for dinner? When I didn’t answer she would simply ask me again.

This morning when I awoke to head off to work, I awoke alone. Seeing no one there, I panicked for a second, took a breath, cleared my eyes then remembered as I have reminded myself on multiple occasions she wasn’t in the hospital. Odds are she is probably downstairs in her recliner after another long, horrible, sleepless night filled with coughing and pain. Instead watching Netflix with her headset on, and most likely snuggled up in a blanket trying her best to let me sleep.

A year ago Jacy received a bone marrow transplant. Today, according to BMT lore is her new birthday. A new birthday is given to every transplant patient upon receiving their transplant. This transplant saved her life. We are, and will be forever grateful for such a generous, selfless gift given without hesitation by a person we have never met. Modern medicine is amazing and I find myself in awe at what these treatments have afforded our family.

But it has not come without a cost.

I wake up disoriented and confused all the time! Exhaustion is a standard of living for me. I can’t fall asleep until after midnight. I fill my time doing laundry, cleaning house or simply watching television while she lays beside me. But even then I am watching carefully, listening to her breathe, judging her every movement. I do my best by allowing her the freedom to make decisions on her own in regards to her day, energy exertion and tasks she wishes to complete on her own. Never overstepping my bounds but asserting myself when I think she may have done too much or is planning to take on more than she can handle. Of course who am I to say what she can, or can’t handle? This is Jacy after all and she is going to tell me what she can or cannot do. Then when things don’t go as planned I just smile a sly smile and without saying; “I told you so”, help her get to where she needs to be. Most of my days are spent working outside for a while, then coming inside to make sure she is surviving and comfortable; certainly being inside also has to do with the current heat spell we are experiencing; trying my best to get the hard stuff done before it becomes too hot. In the morning I generally awaken at first light, toss and turn, trying to sleep just a little longer which may or may not get me to 0630. Then its coffee with the wife and my day begins.

It is as though w have Bone Marrow Transplant PTSD. I panic at anything in regards to her health, position, status, whereabouts, etc.. It is hard to love someone with all your heart, be their caregiver, take care of children, work, run a household and ranch all while trying to remember it is all going to be ok and you should probably take a moment or two for yourself.

The phone calls, updates, a year of hearing it’s all going to be fine then 5 days later you are signing DNR paperwork. The next weeks prognosis is good, but a few days later she is back in ICU. She is going to live, she is going to die. She is a miracle from GOD, she praying to GOD. She is kissing her children, she is praying for one more day with them. Doctors patting you on the back and smiling. Doctors patting you on the back while they sit you down to explain some very serious complications. The amazing amount of time you have, alone in your car, traveling 2-3 hours one way, hoping to spend more than a couple hours with her awake, knowing it is not her fault as heavy medication kept her from any form of alertness.

For a year I have watched the very same medications saving her life wither her body away to nothing. Taking away muscle and tone she worked so hard for so long to achieve. Leaving skin and bone in its aftermath, tearing away at her self-esteem. I have watched as hair has fallen off, skin has flaked away leaving lesions, blotching and discoloration covering her body. I have held her as impaired vision causes her pain, balance issues and nausea.

She cries a little each time we go back to Stanford, afraid some nurse or doctor will admit her. She lives in constant fear that if she does get sick she is doomed. She has mini panic attacks when calling her doctor or making an appointment for the same reasons. The slightest sniffle or cough leads to worry as a fever or discolored sputum brings doubt as to her overall health.

A year has gone by and our children are no longer the same. Learning about life and hardship, struggle, pain, sickness and survival. They will never look at a hospital or doctor’s office the same way again. Our youngest feels that if you go to a hospital the odds of coming home right away are very slim. They no longer know the mother who rode horses, or played sports, gardened and ran the perimeter of our property. No a year has gone and with it all expectations of normalcy.

But I am not writing this to be a downer, because although it has been an extremely difficult year and continues to bring struggles to our family, it has also been of year of immense growth.

365 days of love, caring and a town that never quit supporting our family. Never did I have to worry about whether my children would have a meal, or a place to go hang out, friends to play with, or a parent to help them. My oldest learned what it meant to be a BIG brother. Not just their brother, but one who cares for them, keeps them safe and ensures they stick to their schedule. We are pretty sure they also ruined him for ever having children.

Those children who can’t play soccer, go camping or ride horses and bicycles with their mom anymore have instead learned the importance in taking care of another human being. They have also through helpful guidance from myself and their older brother (as mentioned above) learned how to take care of themselves. Has it been perfect? NO! Have they all made mistakes, some larger than others? YES! Have I screwed up numerous times trying my best to parent from afar while at Stanford? HELL YES! But after this bout of family struggle in their lives I have no doubt our children will grow into fine adults who will undoubtedly help others along the way. Something (compassion) a parent wishes for from the time their children are born. Do our children want things to be the way they were before? YEP, but they also know we cannot go backwards and though it has been challenging they are ready for whatever lays ahead happy with the knowledge mom survived and mom is home.

 

Those medications her and I despise are keeping her alive and with each day comes another opportunity to interact with not only her family, her children, but her friends as well. She still feels as though there is work here on this planet for her to do and although each day taking 23 medications three times a day is a struggle. It is a struggle worth the price. I remember her saying one time that if GOD would grant her the ability to survive she would be content just watching her children grow from the comfort of her easy chair. We all know that isn’t enough for our Jacy and it really doesn’t matter what those medications have done to her outer appearance. The inside is still the magnanimous, charismatic, hilarious, moody, determined, intelligent, caring, loving, the woman we all know. That my friends is all that matters. A teacher once asked me; what will you do when your looks are gone? I can say without a doubt that if we have the love of family, friends and most of all ourselves. Then looks never really mattered anyways did they?

As far as constantly being exhausted, worrying about everything from my wife, to our ranch, long term finances, our children’s welfare, work and beyond? It has been a reality check, and a very long exhausting two years. From first being diagnosed with Leukemia to her having the Bone Marrow Transplant. I am tired, so very tired, I am overweight and I don’t feel all that great, my inner confidence is waning and some days I feel as though I am drowning. But I also know this is exactly where I am supposed to be. I married an incredible woman, God gave me a second chance at life by introducing us. It is within our nature as human beings to complain and as much as I despise complaining I have done it a time or two, or three, ok maybe half a dozen, yet I wouldn’t trade anything. From the moment we met we both knew we were meant to be together. We both heard and felt a higher power formulating a plan while drawing us together. When we married, she began working to make me a better person, not because she had to, but because you just naturally become one once you are around her. Trust me, I didn’t always like it, we sometimes fought over it as I raged against change. But without her, I am not sure I would be who I am today and for that I am thankful and she deserves all the love and devotion I have to give. So a little exhaustion is fine, some residual hospital PTSD is ok and at some point I am sure I will stop feeling exhausted or falling asleep the moment my body quits moving.

But in the end, as tired as I am, through all the hell our family has been through, thanks to God, great friends and family along with Jacy’s incredible will power, she is still here on her new birthday, and for that I will be forever grateful.

kids

 

 

 

Oh how the wheels turn…

theycallmebetty1 Comment

I knew this time was different when we pulled into the entryway. A dozen or so cars all waiting to either move or be moved, patiently we sat in silence. As we made our way to the front of the line you could feel the tension. Slowly crawling to a halt, she simply looked at me, opened the door and quietly muttered; I’ll see you in a bit, I love you.

Jacy hadn’t been feeling good. She always has a cough, has had one since January 2 when she was released from Stanford and sent home. It is associated with GvHD but as of late it has gotten stronger and raspier. Several nights she spent coughing, tossing and turning, not only to the cough but a stomach ache, headache and over all exhaustion. The type of exhaustion that actually leaves you wide awake, praying for sleep, any sleep to come and come quickly. Each rising of the sun signaled defeat for her and mentally it was taking its toll.

Then came Monday night.

Monday she awoke with a fever. A fever is fine, it means her new immune system is trying its very hardest to work. A fever over 100.4 is bad! It signals her system is about to become inundated, unable to handle whatever is causing her grief. She hovered all night at 99.8/99.9 worrying it would tip the scales against her in which case we head straight to Stanford, do not pass go, do not collect $200.00 dollars! (Sorry for the monopoly reference)

It was a very long night.

It took quite a bit of hounding only because my wife is super stubborn but I finally convinced her to call her doctor. Jacy’s stubbornness is not born out of neglect for her own care but instead out of fear! Fear she will walk through those large glass doors at Stanford and be held prisoner for another 8 months. She has bad dreams where she is back and they won’t let her leave. Crying, sobbing, and pleading to just let her go home. This of course is no reflection on the care given at Stanford! Quite the contrary, there is no other place she would rather be when in need. The staff is amazing and we still cannot say enough about the nursing care. It is derived from an imprisonment away from life and her family for which she nor anyone I suppose could ever have imagined! 8 months is an eternity.

Once she put down the phone I knew instantly we were headed back. They promised it was just to check her out but as that little voice in the back of your head tells you; there is more to it than that!

The next day somberly we loaded into the car. Jacy tried her hardest not to cry as we crept out of the driveway. Looking back as our place grew smaller she withdrew, finding something on the radio so as to not talk or focus on the unknown. It was the longest 2 ½ hour ride ever.

I’ll see you in a bit, I love you.

The door closed, I pulled away heading towards the parking structure two blocks away. Walking back I kept telling myself it was going to be an easy fix, they would give her some medication and send us home. (Of course life experience told me different, it was just easier to play dumb and lie to myself.) No stay, no hospital and no more fear raging deep inside. Apparently I have Stanford PTSD for as I walked closer to the building my chest tightened up, my heart rate accelerated and it became hard to breath. Why? Because deep down inside I knew she was going to stay.

Once inside I found her room, testing had already begun. Doing my best to make her laugh, we once again found the Stanford staff to be exceptional. Killing time while we waited I turned on the SF Giants game, they were facing the Atlanta Braves, it was a nice distraction as it was the first time in forever we both were able to sit in the same room and watch the game together.

After a couple of hours, with a chest X-ray under our belt it became apparent they were going to admit her to the hospital. Jacy’s oxygen saturation levels were extremely low which explained her need to sleep for what seemed like 20 hours a day. This news was of course devastating. Jacy kept insisting we could go home and come back the next day, but there was no way they were going to let us travel with her sat numbers so low. We also had another issue. Where to put her. Stanford was at maximum capacity, as in no beds available! The suggestion came down to place her in the Emergency room until a bed could open up. This was not going to happen! The consensus was she needed an isolation room as to limit her exposure to any germs or viruses, yet placing her in this (ER) contaminated place was the answer? Uh NO!

Repeatedly her doctor reaffirmed she would be moved as soon as possible. Jacy would look at me and just as quickly I would reaffirm my stance which was indeed our stance of NO. We would drive home, take the two hour risk of low O2 numbers until she could be hooked up to her own oxygen machine over being left in the ER for who knows how long. The doctor very politely took a stronger position trying to explain all the associated risks for which we already knew, but we held our ground. Isolation room or we go home. What she didn’t know because I am not one of those people is; because of my job I already knew the risks, knew the low percentage of something dire actually happening and had one ace in the whole. There (an exaggeration) are like 92 fire houses between here and home that at any moment I could pull into and receive instant care for any breathing emergency that might arise. But I was extremely confident considering her presentation that would not be an issue.

Jacy’s nurse came in 30 minutes later to have her verbally state her stance or refusal to be sent to the ER for which we chuckled as you could plainly see he was working on a plan. There just seemed to be a gleam in his eye that showed he was up to something good! And he was! Long story short, our nurse pulled some strings, made numerous phone calls and worked it so after the ITC (Infusion Treatment Center) was closed Jacy could stay in her little room until an isolation room opened up in the main hospital. He stayed behind on his own, after everyone had left to ensure she didn’t get moved to the ER. He was incredibly caring and amazing. Once again the staff of Stanford inspires me.

We arrived at noon and now 10 hours later, Jacy was in her own room, terrified but understanding of the situation. She had already received her first doses of medication and was getting ready to start another round. The treatments were to be every 8 hours for a couple days. When I walked out the door to head home at 10:30pm I was both relieved and sad. Relieved she would finally get the care she needed to breath properly again. Relieved she was being examined for any other complications or hidden problems that may arrive, relieved that she was in the very best of care, relieved that so many people care about my amazing wife. Sad that we were here. Even though I knew when we walked out in January we would not do so unscathed. Sad that I was walking these halls once again, alone. Sad that I was driving home once again, alone. Terrified once again of the unknown and sad that our children were seeing mom disappear once again to be left alone.

Thankfully, we are a tight family and we have faith to keep us strong.

 

UPDATE: Just received the phone call!!!! I am headed to pick her up right now. She is coming home! Her voice sounds great! Her lungs sound clear! Prayers, good vibes, powerful thoughts of positive energy all worked yet again!!! Another obstacle hurdled!!!

6/4/2016 @ 11:00 am

 

 

 

 

 

Home..

theycallmebetty1 Comment

Nothing crushes a man’s heart or weakens a hardened exterior quicker than watching your wife cry. Witnessing her rapid release of pent up emotion while absorbing ones surroundings with tremor like sobbing there becomes a moment where no perfect words for comforting leaves you helpless at best. Oh a hug will always suffice yet truth be told there really is nothing you can do but watch and stand fast for any request needing fulfillment.

And so went the first ten minutes inside our little farmhouse once Ms. Jacy crossed over its threshold.

She tried her very hardest in keeping it together, after all she had been given a very warm greeting, some would say almost spastic from her dogs, eight months was an eternity for them as well! Of course there were hugs and high fives from her children, then there was the “Welcome Home” sign along with flowers on the deck. But my poor wife was falling apart before my very eyes and all she could manage to utter between gasping breaths was; I never thought I’d see my home again.. I thought I was going to die….

Standing embraced under the dim light of our kitchen bar she continued sobbing while my heart continued hurting. I could say I understand, but I don’t, not really. Yes I have clung tightly to a faithful vigil of spirituality and positive stature, with an occasional doubt creeping in only to become squashed through a refusal of acceptance. Yes I have walked side by side, never wavering, always spending every moment possible next to her witnessing each and every change in her mental and physical status. But to say I fully understand what she is feeling would be a complete falsehood. Only she knows what lies underneath her weary exterior and at this moment it is sheer joy mixed with uncontrolled emotional pain.

The old me in this moment would calmly say; everything is going to be ok (the unknown possibly positive note) and don’t cry, this is a happy moment, you should be happy you’re finally home (the condescending response of unrequited knowledge) along with there, there, there. (Well that’s brilliant huh?)

What I have learned is this was and is going to be a very traumatic experience for my wife for a very long time to come. The pain associated with this process will not just go away. Living with the thought of almost dying along with not knowing for sure how much time she may have left on this planet in conjunction with guilt for being gone from her family, but mostly her children will not evaporate overnight. She is in a great deal of discomfort every day reminding her of all the physical pain she has suffered thus far. Also reminding her daily this journey is a long ways from being over and with multiple appointments and medications filling her every moment there seems to be no end in sight. This experience has taught me allowing her to grieve for her former self is perfectly normal and my place is to simply love her for who she is, the person she has become and the woman I fell in love with because nothing else matters. She has looked at me and wondered out loud why I would still want her, for she no longer looks the way she used too. But what she doesn’t understand is all I see is the woman I married, she is extremely beautiful to me and always will be! I have accepted that if she hurts, I hurt, if she laughs, I laugh, but most of all if she needs an answer or an opinion to always tell her the truth! Never ever sugar coat it with some horrible regurgitated response as if you’d spent one to many hours watching Grey’s Anatomy. She deserves respect and she will receive it.

Once she gathered her breath and dried some tears she asked to go upstairs to our bedroom. This is the task I have feared most for she has not one ounce of muscle left in her legs. Making it up the three stairs of our porch was a bit of a feat. We decide to try so we start slowly and after several small breaks she has made it onto the landing, out of breath, tired but excited to do so on her own. Once in our room she moves quickly to our bed where she quickly lays down and much like a cat upon its favorite pillow, my wife curls up with a supreme look of contentment on her face. She is home.

The next two days go fairly well. Ms. Jacy makes it slowly up and down our stairs, sits in our recliner to remain immersed in our family and is able to gaze upon the property from our large bay windows. She is so happy to be home and by the middle of the second day begins worrying about going back. She wants to stay home.

It’s easy to say the times away will become shorter, but we don’t know, it’s easy to say this if for the best, but really the best for her is to be home with her family. It’s easy to say any number of things with hopes of quelling her fears. But like I said before the truth is always best. So as she tells me she doesn’t want to go, I simply tell her I don’t want you to go either and this sucks! For the simplest fact of the matter is; it does.

Yesterday we loaded up her belongings, she said goodbye to her oldest children and with little ones in tow we headed back to Saratoga. It could be for three days, or two weeks, we just have to learn to be flexible and play it by ear. We couldn’t do any of this without the support of her loving family and we are forever grateful for all of their sacrifices.

I am not sure if she will ever get used to being gone as each day away the fear of something going wrong and her never coming home again is always hovering over her head. I like to think of it as we actually have money (you know like old family money) and Saratoga is the family vacation house! Complete with family members who are always there and are always happy to see us while we vacation and rest in the serene mountains overlooking the Silicon Valley.

As I pulled out of our driveway I could see fear on her face and my heart began to break once more. The thought of leaving her beloved home, children and animals was tearing her apart! By the time we hit the freeway a combination of denial and medication left her fast asleep. Thankfully she slept the whole way and once in the driveway to her dads house she put on a super brave face as we exited the car entering the apartment, her second home. She was happy to be there, but its just not her home. We turned all the heaters on, put her stuff away and slowly strolled over to the main house for a relaxing visit with her family.

Making the drive up to the main road, headed home I felt alone, very alone and empty. I was so happy she was home, so happy to see her each morning, I had forgotten to take inventory of myself.

It was a long sad drive home….

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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