Category: AML

Can you hear me now?

theycallmebetty3 Comments

In my twenties I never thought much about life and what it held for me. Every day the sun rose I tried my hardest to earn the respect of those around me. At that age you just want to be heard. Your ideas, thoughts, designs, you just want to be equal with those around you. To show the world that you are not just another dumb kid. Of course not helping matters much my looks were far younger than my age, therefor anything that came from my mouth was treated with kid gloves, quite literally.

Some life changes came and into my thirties a family was started, a career blossoming and again I yearned to be heard. The problem? I was the older guy as most in my profession started young and had already promoted to mid-level or even officer ranks. During that time I learned about fatherhood, gained some maturity and just when things started looking my way I also learned a lot about death. It was a challenging time and still no one was listening.

Welcoming my forties, our family grew, my inner child faded away as motorcycles, boats and fishing tournaments slid to the wayside for coaching baseball, and raising/riding horses. Trips to Haiti for humanitarian reason filled our summers, helping us grow as human beings and rodeo soon dominated our lives. For once in a really long time things felt as though they would look up, our family, especially myself could or would find contentment in life. Then came Leukemia, cancer, and a Bone Marrow Transplant. A very sick wife was struggling hard, fighting for survival and once again I found myself yearning to be heard.

This time it was different.

You see before, I longed to be taken seriously for whatever I may have learned along the way. Wishing those who I surrounded myself with would just listen, understand that maybe just once I actually did know something and could be thought of as equal or even a peer to someone new.

Over time I stopped yearning to be heard but instead chose to listen. Listening is one of the most important traits we can learn as a human being. Listening allows you the opportunity to feel empathy, compassion and love. Three of the best human characteristics we could possibly have or share with others. So I listened, and listened some more and I learned to love by not saying a thing. To empathize with those around me and show great compassion to those less fortunate than I. Listening gave me an opportunity to engage my brain instead of my mouth. Insecurity feeds a rapid fire mouth while silence often times shows great strength.

Now as I am but a few months away from my fifties I am yearning to be heard again.

My wife is struggling with all that has happened to her. She has been a pillar of strength for so many including myself. There is not a day or moment within the day I do not think about her. Alone, in her chair, or upstairs in bed, wondering, asking God why this happened to her. She has survived so much and yet she feels as though she has lost just as much as she gained. A woman who thrived in our barn, was an angel to so many children within a classroom setting and my best friend is still patiently waiting for things to get better. We are one year since chemo and one month away from her transplant. We are three weeks away from when she left the house for what was supposed to be at its worst no more than four months. It was eight months instead of struggling to survive. She is trying her hardest, but most days leave her incredibly exhausted and unable to move. She may have two good days and four really rough days. Her body is fighting her at every turn. She looks up and smiles at me but we’ve been together for 15 years and I can always tell when there is something hiding behind that smile. Some things she just can’t say, but my heart knows what they are because I have listened. 

So to my wife I hope you can hear me because this is what I have to say.

I love you.

I have loved you since they very moment we kissed. It was a confusing time, a scary moment but an inner sense told me it was supposed to be.

There is something about your personality that is mesmerizing. Like staring into an oasis after a long hot journey across the sand. You are that safe comfortable place so needed after such long travels.

You haven’t changed; your caring shines from the inside of your soul. I have yet to meet anyone who doesn’t instantly feel comfortable around you.

You are the devil when you are angry. But if you weren’t my strong personality would roll right over you and that wouldn’t be good for anyone.

I could never imagine a day without you. Just like chocolate

We have four super fantastic pain in the ass children who love you! They are frustrating and amazing all at the same time. They also have no idea just how serious ALL of this has been and because of that they can be a bit selfish at times. But remember, they love you. They show it every day by not doing their chores, arguing with you about homework and treating you like its days of old where you would pick up after them.

I am scared to death but refuse to show it to you. You have enough to deal with emotionally other than dealing with my fears. This whole thing is so unnerving and yet watching you fight so hard, how could I ever tell you I am scared as well.

Quit worrying about what GvHD has done to your outside appearance. I know its difficult, and I understand you miss your old body but; I love you, the person who is you, it doesn’t matter to me what you think you look like because when I look into your eyes and the smile lines under those eyes relax for just a moment, you are there, whole, kind, caring, soft, understanding and as beautiful as always. I only see you..

I don’t know what the future holds for us, for you. I will not pretend I have the answers anymore. This whole thing sucks, it is painful, emotional and at times beyond comprehension. But I do know this; There is no one on this earth that I would rather be with. I am thankful every day that you chose me for a spouse. Yes it is hard taking care of everything without my partner in crime but I got it. I am doing the best that I can and the only reason I am doing so well is because of my love for you and my faith that God is watching and has a plan.

So please my dear wife ease your worried mind, have faith, look into my eyes and know I will always be by your side, helping you any way I can; Loving you and cherishing every moment we are together. Lean on me all you need, and rest when ever you want.

For every day is a glorious gift from God.

. .

 

The Journey

theycallmebetty2 Comments

Thursday we made our bi-weekly or so, journey to Stanford. These required visits are needed so doctors may track Jacy’s constant state of GvHD.  Whether it be dealing with a pulmonary function test, her intestinal tract, eyeballs, skin or simply drawing blood to determine antibody needs we always arrive nervous, expecting the worst but hoping for the best as in serious signs of improvement. These appointments can range from down and dirty, leaving us with more time on the road than actually inside any facilities, to eternally trapped on campus with no place to retreat between sessions! Moving from one appointment to another with sometimes more than an hour or two in between visits. We laugh at each other for it has become the only alone time we ever receive and of course nothing is more romantic than swooning surrounded by similarly sick people or holding hands beneath the deep shadow cast from a set of IV pumps inside a sterile chamber. On this particular day Jacy was meeting with her primary Doctor which is always a treat. She loves seeing Dr. Muffly and always comes away feeling as though she just spent time with a friend. But first a 4 hour IV infusion of antibodies to boost her multi layered, still very confused immune system. After that a little round of pulmonary function testing and then it’s back on the road to hash it out with every Bay Area commuter trying their best to get home in under 3 hours. Of course the first hour is fun for me as I play a time honored game started with my son Parker that centers on the Toyota Prius. Much like the road game slug bug only the Prius takes its place. We also play the car spotting game, Tesla, Ferrari, Audi, and Porsche. It is fun driving through a community where the majority of vehicles on the road are green or simply cost more than my house. Ahhhh to have that kind of disposable cash….. We pulled into Stanford’s Cancer center turn around at 10:30 am after a leisurely 3 hour traffic jammed ride when my wife suggested I find something to do other than sit by her side for 4 hours during her infusion. Now normally I would have balked at this absurd suggestion as I have always believed a husbands place is by his wife’s side, no matter what! But today she was right, I needed some Betty time. Time to reflect and be alone. Time for just me with no one needing me for anything. Trapped in the center of Silicon Valley with no excuses to hide behind, that is just what I chose to do and with a kiss, a hearty good luck and I’ll see you in a while, this guy headed out alone.

Where to go, where to go????

I thought about going to the Tesla store but I knew then I would want one and since that type of purchase is nowhere in our future I turned the old faithful 200,000 mile wagon left instead of right. Of course this also eliminated the Ferrari store, the Audi store and who couldn’t pretend car shop without sitting inside a Porsche 911 4S! To dream ah to dream.. First retreat I chose to patron was a little restaurant I have passed a hundred times. A quaint little place nestled in the hills above Palo Alto. A place I have yearned for my world to stop just long enough so I may cross its gastric threshold, yet there never seems to be enough time. Today would be different. When I pulled into the parking lot the first thing to hit me was a smell of ancient redwoods filling my nostrils. Walking up to this small, shake covered hut, heavenly aromas wafted across the open plane. Stepping onto a huge well seated porch I quickly took my place silently amongst some of my favorite people in the whole world. Bikers

That’s right Bikers, masters of the motorized two wheel sleds. Throttle squeezing, leather wearing, Carbon fiber covered, alloy loving, helmet adorning, race pipe thundering, high rev, revving BIKERS! Eating my breakfast a Cheshire cat smile glistened as I listened to each story about the mornings ride, or a previous ride or a tale about someone else’s unbelievably adventurous ride. Tech talk at table two involving power commanders and horsepower. New heads for table fives Harley and a freshly painted fairing to boot! I could almost feel a bike running underneath me! It was good to be back amongst these folks. Gazing across the landscape I recalled many of my bikes from days past. A simple street cruiser, bench seat KZ500, my very first Harley! I could still sense the raw power and throaty noise coming from one of my customs while aching for the sheer arm stretching torque produced by my ZX12R which had quite a few modifications. Each motorcycle reserving a special place in my heart, leaving me smiling, content and hoping I’ll know that feeling again. Yeah, someday day, I’ll be back. After settling up with the waitress I drove down the road a ways to a state park where walking off breakfast sounded like a good idea. Parking the car, walking to the trail head I chose a direction and headed out across this large open field. Working my way along the hillside there arose a bench in the distance. Reaching that bench I couldn’t help but laugh as I read the plaque inlaid upon its top plank. It was quite simply labeled “Bobs Bench”. Taking a seat the view was amazing. I thought to myself somehow dad knows I’m here, sitting on a bench with his name and wondering how he is doing. In return I knew he was looking down upon me, letting me know he’s watching over Jacy. He loved her so, they bantered back and forth and in reality the old man lived for her calling him out for his shortcomings.

Strolling farther down the path it felt as though the weight of my world had left for a bit, a beautiful fern laden path, some ancient trees, and even a few Mountain Lion tracks made this the perfect hike. I lost track of time and before you know it I had traveled 4 miles. It was glorious! Now I will say this, when deciding upon an impromptu adventure, ensure you retain alternate apparel somewhere in your vehicle for just such an occasion, for as I discovered the hard way; Vans are not for hiking! Just saying!

Back at the car I made it three miles down the road when Jacy called to say she was almost finished. Perfect timing. Picking her up some lunch then circling back into the Stanford Cancer Centers turnaround she climbed inside already a bit exhausted. We headed over to the main hospital where we arrived very early for her last appointment, a pulmonary function test. Luckily we didn’t have to wait very long and before we knew it back on the road we were, heading for home.

I thanked my wife for the wonderful morning, and I told her all about the day’s events. She told me about her appointments but before long she was drifting off to sleep. We weren’t 30 minutes into traffic when Jacy’s head nodded its final nod, resting gently towards the door, looking completely tuckered out.

These trips are hard on her and so is the process of recovery. She tires of being exhausted all the time and doesn’t understand why she just isn’t healing or regaining any of her former strength and vitality. Jacy is very thankful to have survived, to have fought as incredibly hard as she did, but the longing to just be normal, to ride horses, to help her kids, to be a teacher again surrounded by children who aren’t hers, but in reality are very much her children has become overwhelming for her at times. It is hard as her husband to see her in pain, to see her struggle, to see her longing for the past. As a man I am a fixer by nature and I can’t fix this, I can’t make it better, I can’t take it from her and make it my own.

The best I can do is support her, listen when she needs an ear, stay quiet when she screams at the ceiling, give advice when she asks for it and when my wife says to go do something on my own. In this case a journey within the monthly journey.  Do it, enjoy it, and thank her for it afterwards for without her coaxing me to do so, I wouldn’t. I would stay right by her side, making sure she is ok and telling her just how special she is to me.

I cant wait until the both of us can sit on Bobs Bench.

bobs bench

 

She fights

theycallmebetty6 Comments

Every morning she wakes up between 4 am and 0930. Her sleep is not natural as pills determine the night or days slumber routine. Weight is something she cannot gain and although there would be some envious of this side effect it is anything but glamourous. Her eyes work somedays while others they are filled with a blurry focus similar to gazing through a plastic milk jug. Her breathing is labored at times and she needs oxygen throughout the day and night to help keep her lungs strong. Pain is everywhere and nowhere, moving from an arm or a nervous leg to her back, sides, head, teeth and eyes. Medication is everywhere, we have pill bottles around every corner (figure of speech) waiting to either empty or crack open in dire need. 23 little pills, swallowed three times a day. Each pill with a specific purpose, each pill supporting another as they cross paths within her tired system.

Each day is a new adventure, wandering from upstairs to down. There are moments of greatness! A trip to the basement, or a stroll to the tree outside, down the road. Muscles yearning for mass from not that long ago, arguing with her central nervous system over usage, proper form and desire. Prioritizing each need hoping it can guide her successfully towards a much needed strong finish.

The garden yearns for her touch, her flowers and fruit trees scream for attention! There is one big draft horse and its little Donkey friend who stare at the house wishing she could come out and play. Little do they know she stares right back?

Her teaching job calls to her as she misses each and every child who ever graced her classroom door. Their quirky attitudes, laughter and stories, making each day special in its own way. Instruction, knowledge sharing, testing, creating, and showing each child no matter their background that her classroom was always a safe place to be, a wonderful place to learn.

Friends come and go, happy to see their friend has made it to this place of reclusion. She moves about between the kitchen, living room and bedroom. Little stints in each area much like a 7th grader changing classes. Sitting just long enough to learn and appreciate either her surroundings or emotional moments shared between herself and her children. She laughs and loves to have endless conversation with her friends. She knows she will pay for it as with any two hour visit there is a three hour nap post get together with her pillow. But when she awakens she smiles, for a visit is something special when not more than three months ago there was talk of her not surviving.

She longs to be free. Free from this damn GVHD! Free from this home that has somewhat imprisoned her for hours on end. She longs to hop in the car and drive herself to the fabric store, feeling that independence so taken for granted not that long ago. Oh occasionally she spreads her wings and drives to a softball game, or over to the produce market. They are after all straight shots and if her eyes get to bad I am but a minute away. But it still isn’t the same.

The feeling of exhaustion from walking to the car, shortness of breath after lifting a couple bags or fruit, closing the cars hatch and finally sitting back behind the wheel. This is a mental war with her physical being that’s being fought and has escalated rapidly. There are times she wishes she could just tell herself to knock it off and get with the program! This runner, swimmer, biker mom who could out move most people on their best days now needs help just to get up the stairs. She is cooking dinner again and slowly starting to do laundry (because she wants too!). Anything to make her feel normal, like nothing has happened and life is just as it was or should be. She is sewing and drawing which are two things she very much enjoys. She is constantly trying her hardest to gain just a little more ground. No matter what that ground may be.

People constantly ask me how she is doing. My response is always the same.

No better, no worse, just one tough lady who is happy to be home.

Jacy survived chemotherapy, she survived remission, then recurrence; she survived chemotherapy once again and then watched with the strength of a thousand draft horses as a new immune system entered her body during a BMT transplant. She has survived every GvHD (Graft vs Host Disease) complication known to man and lived after putting her big girl panties on willfully accepting a new trial drug to combat her symptoms. Her doctors tell us each time we visit that we are in uncharted territory. She was not expected to survive but when asked what her thoughts were she said; I am not leaving my family! End of story! You can do what you want, but I am not leaving my kids or my husband.

And she hasn’t.

My wife has always been a fighter. She fought for our relationship in the beginning, she continually fights for our children; she fought for our daughter and fought for hundreds of children in Haiti. She fought this thing call Leukemia and now fights GvHD. She is currently fighting a bit of trapped in the house depression, along with an ability to hold onto hope for herself and her future. She fights against the elements, hoping one little organism isn’t out there with her name on it, waiting to attack! A nasty little bugger giving her something else to fight for with her back up against the ropes. She fights for herself and her need to succeed. She fights because that’s who she is and what she does well. She fights while keeping a patented Jacy smile affixed firmly upon her face.

She fights to come back to church, and pray.

She fights to have some semblance of her old life back.

She is my hero and that’s why I will always fight for her.

jacys hand

 

 

 

 

 

More….

theycallmebetty4 Comments

Grass glistening under the morning sun I can almost feel a damp chill through the outer liner of my boots. There is so much to do here on the ranch, something I’d taken for granted prior to Leukemia entering our lives. Every day waking to a cup of coffee, a list of projects, horses that need riding and good close friends who share my love for our equestrian lifestyle.

Life was slower, moved more efficiently, our time allotted carefully with separated responsibilities tackled by two active adults. Yes it wasn’t always perfect, there were collisions of schedules and an occasional finger of blame pointed in the others direction for absence of responsibility. We thought; how could life possibly be any busier? Oh how wrong we were.

Today, I have nowhere to be, (a rarity) the list of stacked up chores is overwhelming. None of these written down labor intense segments of self-importance are of any severity in the grand scheme of things. But the sun is out and even sitting here typing now feels like a guilty pleasure for which I should not partake. My wife is asleep. She doesn’t really sleep all that well anymore. Her medications are leaving her on a revolving pattern of slumber that is tiresome to watch. I spend as much time as I can inside the house making sure she is ok. She has so many medications taken daily it blows my mind at her ability to keep track! But she does, and often time after double checking I’ll find she is to the pill in her counts. We have Oxygen tubing running across our bedroom floor as she needs a consistent O2 boost so her saturation levels remain above normal. Feeding her has become difficult as these little pharmaceutical wonders leave her stomach tied into a burning knot most of the time. When she does eat it’s an egg sandwich, just toast or on really brave day’s carrot cake. She is doing well getting up and down the stairs, but prefers and wisely so to have someone with her when she does.

Somedays she stares blankly out the rear window of our little ranch house; to say I wonder what’s on her mind would be a false statement. I know. One doctor telling her to stay inside, another telling her she shouldn’t even be here at the ranch, it is to dangerous, while a third claims the occasional trip across the grounds couldn’t hurt. It’s a conflict of emotion, an experiment in mental strength, a dichotomy filled lifestyle. Does she risk it or watch from the bleachers? Should she enjoy what’s in front of her peering through a “boy in the bubble” perspective or run with abandon into the countryside? There is more, there is always more and when you have stared at four hospital walls for 8 months you pray to the heavens above for more. Once granted you now stare at four household walls and you pray for even more! More time with your children, more time with your husband, more time to be outside with your animals, more, more, more! To many opinions, to many rules, to many drugs, to many trips to the hospital to many restrictions, yet only one life.

Outside the birds are pleased, blue skies above them, food is plentiful below and they sing with glee. Our brood of horses’ knicker and snort at the prospect of roaming green fields. Four dogs have all found places in the sun, soaking up its brilliant heat and not one barn cat remains inside the barn. The air cool and crisp, combined with those warm rays of light makes for a glorious day to be in a right here, right now frame of mind. A solitary moment, to myself, outside with my eyes closed tight selfishly dreaming of the way it used to be, the way it was. A small pebble under a giant blue sky standing here calmly taking it all in, occasionally looking out across our property while absorbing its natural beauty my smile comes on the weight of heavy shoulders as our once normal life has been replaced by these solitary random moments.

I wish there was more…

images-3

 

 

 

The scary stuff…

theycallmebetty4 Comments

The scary stuff hides in plain sight, we try our best to ignore it but in reality the scary stuff is what lets us know we are living.

I am terrified of death. It surrounds me with in your face realism, implication and pure dishonesty. Lying in bed, staring at the ceiling wondering when it will come, how it will come and have I done all I could to let those I care for know just how much they mean to me? Have I spoken a word in haste leaving someone disappointed or was I able for just a moment to make someone’s day?

Do you close your eyes and feel all the world has to offer or do you clench your teeth frustrated by the very movements within your realm? Do you drift away from the sight, sound or smell of another place thankful for having been there or do you grasp tightly to the past angry at what the future holds in store?

I cannot control the panic within, a feeling there is something more and I am running out of time. That I haven’t lived to my full potential, achieved all my dreams, helped all that could use assistance, or been the best human being I could possibly be. My brain runs out of control and there are moments the thought of trying to stop it long enough to grab any form of tangible information to act on is overwhelming.

So the scary stuff creeps in, like a game, toying with my ability to reconcile myself.

I stare at my wife while she sleeps, scared she won’t be there in the morning. Two years of this nightmare have worn away my ability to be realistic about things at times. Watching all she has gone through and yet she still tries to smile, to have a positive attitude, even when she really doesn’t want to anymore. Being at work is an eternity as my subconscious leads me into a room of dirty tricks. How is she? Why won’t she answer the phone? Has she taken her medications? Are the kids helping her? Is she eating enough? Has she walked today? I know she is ok, she has her phone to call me, and my mother is right next door, able to check in at a moments notice. I know the kids are helping and our close friends/family are doing their best, but the scary stuff keeps pushing my insane fears into the light so I may remain bewildered and lost.

Stressed beyond what I ever felt I could handle, my stomach, head and neck hurt all the time. I have ridiculous nightmares always revolving around the loss of someone near me. Last night it was one of the boys in a vehicle accident. The scary stuff lurking in my brain won’t let me gloss over anything in a dream either, its graphic and designed to always leave me terrified upon waking. The scary stuff knows how to leave me down and out through shock value. I am tired… All the time….

What do I do? How do I control it? It feels at times like a giant weight upon my chest. Somedays I can’t breathe and find myself sobbing for no reason at the very stupidest of things. Like an imaginary scary creature hiding under my bed, only I know it’s there, only I can feel its presence, and only I can battle it when it comes out at night to play. It is my burden to bare.

The scary stuff is what tears at your soul, leaving you scarred, hurt, but alive. We all have scary stuff lurking in our brains, without it we would never understand the value in cherishing every moment on this earth. For the good stuff is even sweeter if you’ve had to deal with the scary stuff life is made of.

I wrote this tonight because many have asked me repeatedly how I have been able to handle everything through this Leukemia/Bone marrow transplant infused portion of our life. Truth be told, many days I don’t! I do my very best to juggle everything while keeping a smile on my face, sharing a joke here and there, trying to keep my children smiling all while letting my wife know she is the very center of my universe. I vent a lot on friends and I believe in having faith! God looks over us all and challenges us daily, it is up to us as too whether or not we accept those challenges. There is always hope, and even though the scary stuff is a reality in my life, my way of never letting it win is by writing about the fear so others who read this know its ok to feel everything I just described. If you take time in recognizing your flaws, sharing your pain and understanding there is always a better day ahead, the scary stuff doesn’t stand a chance. It may not be today or even tomorrow, but faith is there waiting to put the scary stuff we all feel and worry about right back under the bed where it belongs.

 

 

 

The road home and transition.

theycallmebetty13 Comments

It is official, as of right now, Jacy is home for good! Tuesday we traveled from Stanford to Kaiser then over to Saratoga and when all was said and done, 14 hours had flown by, the car was loaded with all her belongings from the apartment and I had one very tuckered lady on my hands.

Our schedule currently remains the same. Once or twice a week we will continue making a roughly 2 ½ hour trip into Stanford for her doctor’s appointments. These appointments will ensure we are continuing down the right path, juggling a fine line between steroids and immunosuppresses. Blood draws, counts checked, dietary regimen consistently re-examined and of course there remains those damn pesky lungs that refuse to heal! We still are incredibly careful when it comes to her exposures and because of the high risk being at the ranch, she rarely makes it outside for more than a few minutes to enjoy her homestead surroundings.

Jacy’s body has made no real progress, we are in a serious holding pattern. Being in a holding pattern isn’t so bad, her doctors agree as long as she doesn’t slide backwards it will be counted as a win! Unfortunately not making any real progress is weighing heavy on her mind as she sees all of us hustling around taking care of everything. The go getter inside her is screaming to come out and play! But she can’t, she doesn’t have the strength or energy so rest is the order of the day, every day. She does her best to put in some light exercise to stimulate her atrophied muscles in hopes of getting back to normal sooner than later.  So a holding pattern is where we remain, and regardless of her progress after talking with her doctors we all agreed home is where she should be, in her own bed, watching her children, resting. No mother should have to be away from their children and regardless of her condition, just being able to converse with her kids face to face daily is all the medicine she needs.

My wife is constantly telling me she is sorry. For what?? I tell her she has nothing to apologize for but she doesn’t want to hear it. Jacy cannot believe everything I’m able to get done on my own and only wishes to ease some of this burden. To be honest I am exhausted, all the time, and some days am amazed myself how much this completely disorganized fool accomplishes! From sun up to sun down there isn’t a moment away from work that I am not moving. But there are no serious complaints. My wife is alive and that’s all that really matters to me. Making sure everyone else in my family is happy, healthy and participating in life is what’s important to us both and if that means little sleep and running all over this county daily well that just happens to be a side effect of our current condition. But she has nothing to ever feel sorry for, trust me when she is healthy again I will turn over the reins with a giant smile on my face and love in my heart.

Life is what you make of it. I personally have always believed there will be many times life turns on you, piling more and more on top of what you already believe you can handle and it’s what you do during those times that dictates the life you choose to live. It doesn’t mean you always like what’s happening or are even able to find a positive from the situation. Trust me the black cloud following our name has hung around way too damn long! But you can’t just roll up in a ball and quit either. There is always a plan and just because you cannot see the whole picture right now doesn’t mean you should ever think of giving up! I was taught strength comes from within the struggle.

I see couples on FB having drinks, wine tasting with friends, hiking in the mountains or on grand adventures around the globe and jealously sets in for a bit. It is so easy taking for granted just two short years ago that was us! We were shooting selfies at the bar or in the country somewhere on horseback! Snuggling under the moonlight, walking hand in hand in Haiti or simply enjoying dinner out with family! I long for the day she gets irritated while out on an evening walk because I am moving to slow! When I think about how much I would rather be on horse today, I remind myself that Jacy would much rather be anywhere but stuck in bed, with oxygen plumbed to her face and fluids flowing freely into her arm! Sleeping away large sections of the day, brought down through medication like an animal hit by a tranquilizer gun! I remind myself that my most important job in life is her, never taking it personally when she snaps at me exhausted from a long day of medications, travel and doctors, meanwhile cherishing every second she is able to snuggle and hold me, looking in my eyes the way she does filling my heart with love.

This whole process over these last two years has taken so much from her both physically and mentally and I am so grateful having her by my side once again. There is no doubt this will be an amazingly long road to recovery but it doesn’t matter because she is home, her numbers are holding, we have our family, friends, prayer and hopefully a little luck finally shining through that black cloud, chasing it away.

Its been a long road home, but home is good and family is even better..

 

 

 

A little stronger bit by bit…

theycallmebetty6 Comments

Another week has come and gone. On Tuesday we head back for Jacy’s now weekly checkup. She is happy to be home and finally feels at ease with herself. Mentally there can be no place to better prepare yourself for this long journey than home. Home is a medicine that you cannot prescribe, cannot pretend to be a part of or ignore out of fear.

When she came home for the first time a week back she sobbed at its sight. I on the other hand hadn’t realized that I have come to take home for granted. Each day wandering its fence lines, complaining about every broken bit needing repair and quirky little abnormalities that drive me insane about our little house on the prairie. When I walk in the door each night I stare at the unfinished front room, sigh at out 30 year old kitchen with broken tiles and antique (by today’s standards) stove. Heading upstairs it’s obvious our carpet is shot, the staircase needs rebuilding and every room could use a new coat of paint. I know it’s no different than how most people feel when looking at what could be reinvented within their own homes but for me it’s become a sign of failure.

Then Jacy walks in, so happy to be inside our house she begins praising each and every goofy ass part of it! Why? Because it is her home. She has been gone for 8 months, she never thought she would see this recycled, eclectic domicile again! Looking at her swollen eyes, the happiness written upon her face, she stands, shaking, crying, appreciating every little bit of it! I feel like a blind buffoon. So worried about what others think when they come over, what they see when they come inside and for what? Nothing. It is our home, a place we have struggled to keep, a roof over our head my wife loves so much she fought the battle of her life, for her life to come back too. Seeing her so happy to be here, squeezing me and telling me just how important it is for her to be home. How could I be anything but grateful for all we have accomplished together? All that we have.

Jacy worries about her children and what not being home has done for them. They have learned to be self-sufficient, but they have also learned to be without a parent as Cody has taken care of them while I have been either at work or visiting her. Do they still need her, will she feel they still need her, and will she really be able to do anything with them while she is home are all questions running rampant in her brain. She stays inside every day, too scared to step out into our world of country organisms and spores so any activity must be house based. But to her, just being in the house as a presence is better than absence and reinforces there are two parents to love and care for our children.

She never wants to leave. Each time we load up to head back she becomes nervous. Scared that she may be sliding backwards or after a run of tests the news won’t be so good. Whenever we pull out of the driveway she becomes quiet and very focused as our home becomes smaller, hidden within road dust of our car. I cannot fathom what level of fear courses through her system as we get further from home and closer to Stanford. It is home that she thinks of during her appointments as well. Every question centered on the latest information and how that coincides with her being inside her house for an even longer period of time. Always searching for more to help her feel the healing powers of home.

This week when we go back on Tuesday they will permanently remove her eyelashes in hopes it will accelerate the recovery from GvHD of her eyes. Her eyelashes have grown inward and are scratching her corneas. We will also be looking for some hopeful weight gain as she has been hovering steady in the 114 pound range. I have worked hard at feeding her very well this week even when she hasn’t wanted to eat so my fingers are crossed! I figure she needs to gain some of the 20+ pounds I have gained through this process and I am more than happy to give her all I got!!

Everything else in regards to her recovery has remained the same. GvHD of the gut is still mildly there, same with the bladder, although the bladder is doing quite well. She is still fighting GvHD of the skin, lungs and of course her eyes. There remains a fine balance between steroids and immunosuppressors to keep either the GvHD at bay or any form of infection/virus that may try to engage her system. She has made great strides in her strength as she can now climb our stairs, although the Rocky theme music and dancing at the top is getting a little overdone!

So we trudge onward, little by little, day by day and through the generous thoughts of many we continue to win this fight.

I have seen something else under the sun: the race is not to the swift or the battle to the strong. –Ecclesiastes 9:11

 

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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Welcome home Ms. Jacy..

theycallmebetty5 Comments

Eight long months Jacy has been away from her home. She has wondered many times if she would ever set foot upon this ground again. A place set deep in her heart where we laid a foundation for family. Many sleepless nights filled with fear, never knowing what’s lingering around the corner in regards to treatment. Waiting, sometimes not so patiently for her life to change, either succumbing to this nasty beast raging inside or feeling a warmth associated with victory shining upon her tired face.

Today all that changes

This morning after a series of appointments inside Stanford’s Medical Center Jacy Mirelle Franceschi will climb into our family mini-van for a two hour drive back home where she will step foot once again firmly on Blue Sky Ranch ground! Jacy has been given a green light to a three day pass! A required experiment to see how she handles being a little further from her Stanford safety net. To date Jacy’s numbers are holding and Stanford is doing their best to slim down her appointment schedule. Jacy still has severe GvHD and needs regular treatment, but there comes a point where it’s better to throw caution to the wind, allowing her to come home for small segments so she may become mentally stronger. Hopefully this will boost her spirits, work a little on some depression and help her body to heal faster. It is and will be a momentous occasion, and at the risk of sounding cliché; to say we are excited is an understatement!

As excited as we ALL are we are also completely terrified! During this last week we have been working on sterilizing a farm house! Let that sink in for a moment, two words that just don’t go together, sterilization and farmhouse. It has been an extremely hard project, and thankfully we have been blessed with some awesome assistance! (Thank you Alisa, Isabelle, Cody, Jake, Jessica and Lynette)The house is clean, neat and smells fantastic! Yet the house is only one issue we must face, from this point forward we must work to keep it hospital clean in combination with watching what we bring into this rickety old structure! This is going to be no easy task. But the alternative is unacceptable.

Here is a little explanation of how things will change. Starting tomorrow whenever a family member goes out to the barn and works horses, show pigs or sheep, they must strip down and shower putting fresh clothes on before coming in contact with Ms. Jacy. Why? Because spores, organisms and germs can enter our beloved family member through her lungs, causing her GvHD to expand sending her on a one way trip back to the hospital! Our dogs must be bathed constantly as to not cross contaminate or carry any spores into her area. Jacy must be protected from the sun at all times, continue with a regimented treatment of 23 medications 3 times a day, two breathing treatments a day and oxygen therapy at night while she sleeps as her saturation levels drop during this period due to GvHD of the lungs. She is still dealing with GvHD in her intestines as well so her diet is being watched as food doesn’t seem to stay with her, leaving her unable to gain any weight. She is also dealing with GvHD of the eyes which leaves her vision incredibly blurry one day with moderate vision the next. Later next week she will have her eyelashes permanently removed hoping to limit damage being done to her corneas. This along with her tear ducts being plugged will hopefully promote more inner moisture and further the healing process. It also means we need to limit the amount of dust and dirt her eyes come in contact with and keep on a regimented medicated eye drop treatment. Oh by the way speaking of dust and dirt, if you have been to my house/ranch then you know we are BIG on recycling products for re-use! Guess what? All the reclaimed concrete that constitutes 3-4 inches of depth on all our drivable areas? (Driveway, pathways, barn circle) well she can’t be exposed to it. The doctors are worried about all those nasty little bugs and germs crawling around in the dust associated with concrete breaking down. Yeah it’s going to be a scary tough go, but those are just some of the things we must consider to keep her healthy.

Ok enough of the scary stuff, now the good stuff.

None of us can wait until she is here! Just the thought of walking onto the property after all this time is more than I can comprehend. Today my wife will finally sit with her family, eat her own food, and laugh as she tries to wear her old clothes (she currently weighs 110). She can sit in her own living room able to look out at the ranch and see all her beloved animals spread across our property. Tonight, she will shower in her own bathroom, watch TV in her own bed, sleep next to her husband and wake up the next day wondering if she has won the “I get to be home” lottery.

Just think about it for a moment. Think about what that would mean to you, if you had traveled the very same path. I think about it all the time, night and day. I think about what she must be feeling, where her head is at right now and how can I make a difference. With that being said; since I know my wife occasionally reads my blog I say this.

Jacy

8 months ago you headed out of our driveway knowing you would be home in 3-4 months because you were going to conquer this thing called Leukemia like you have conquered everything in your life. With style, class, a smile on your face and the ferocity of a lion! 5 months ago you stay positive but things really weren’t looking so good. Multiple problems and a case of GvHD the likes very few had seen. You began struggling mentally and physically because the odds were stacked against you and it looked as though options were running thin. Four months ago you weren’t any stronger and terms like Power of Attorney and DNR or Do Not Resuscitate orders are being thrown around with a palpable seriousness no one could fully comprehend. You still fight; Scared and tired, some days wanting to throw in the towel yet you continue enduring pain, nausea, poking and prodding with that same patented smile we all love so. Meanwhile the only sleep you receive is either drug induced or through sheer exhaustion from being woken every hour for meds, a B.P., temperature check, physical therapy, Infectious disease consults or doctors just making their rounds. Three months ago a glimmer of light, your body turns around just enough to give everyone some hope, especially you! Almost two months ago a New Year’s surprise, your doctors have said we think it’s time for you to go. And go you did, with the very same determination and ferocity you strolled into Stanford with 8 months ago. It is one of a million reasons I admire you as a human being, not just as my wife.

I have no doubt this next chapter starting with three days home here and four days home there will be handled the very same way you handle everything. You are an amazing woman with a family that loves you. It will be difficult and very trying on us all, but mostly on you. But it is without a doubt the last step towards your permanent residency back here where you belong and I cannot wait until the day we saddle up head out across the back 40 and either laugh or cry about this dark time in our lives that we survived together. It will be glorious..

I love you

To everyone else, please say a little prayer for my wife tonight as I am sure this afternoon will be emotional beyond our wildest expectations. Once again for those who have supported our family through these last two years without fail, I cannot thank you enough! We still have a very, long road ahead of us and we are still very scared, but there is no doubt in my mind without all of you praying and caring for us the way you have we wouldn’t be where we are today.

God bless you all,

More to come….

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She loves me..

theycallmebetty12 Comments

Today my wife told me she loved me.

Although not sounding a least bit out of the ordinary there is trepidation in her voice for she is scared. Terrified at any moment somewhere within the vast towering marble and hardwood covered hallways of Stanford there awaits a doctor ready to give her some bad news. Something in the neighborhood of her counts being wrong, or she isn’t improving as well as anticipated. Every breath she takes is met with fret as she analyzes her inspiration and expiration for volume and consistency knowing she is but a cough, wheeze or low oxygen saturation number away from possibly being kidnapped back into the BMT wing. She is a prisoner on parole, hanging with old friends praying one of them isn’t holding drugs or carrying a weapon. Anything that could lead to a quick trip back too the pen.

Two nights ago her temperature shot up after a long day of doctors poking and prodding around her already frail body. Slowly it crept up 98.9, 99 then 100. When her temperature reached 100.4 alarm bells were sounded! Of course one cannot reach a temperature of 100.4 at 2 in the afternoon, that would be a simple problem to handle! No scary situations always happen in the middle of the night when no one, even the affected wants to get up and go anywhere! But time means nothing for you see at 100.4 if held consistently for an hour with two matching readings it’s time to call the BMT team immediately! If her temperature reaches 101, we notify the BMT team then load up our car for a one way trip back to the Stanford hotel! So to say my wife is constantly on edge is an understatement. Her nerves are definitely raw.

Every day she wakes up and consciously tries her hardest to put on a brave face! She started 26 months ago by telling Leukemia it wasn’t going to win, it wasn’t going to take her from her children! Now every morning she prays GvHD doesn’t have the last word! She is incredibly strong but with strength comes doubt! Every time she looks in the mirror at herself and sees what GvHD has done to her skin, body and hair she wonders what more could this horrible side effect of transplantation do to her already ravaged body? Each day she gets out of bed alone because I am 80 miles away at home and she wonders what we are doing, is her family ok, are her kids doing well in school, and how on earth am I handling it all by myself. This of course leaves her feeling a bit out of control in regards to her life which in turn leaves her feeling stressed and disconnected. Her whole life is on hold and she fears that it will never be the same, that she will never be the same which desperately leaves her longing for the days before Leukemia ruined everything. This becomes a cumulating effect that slowly tears away at her spirits leaving her often times depressed.

So she tells me she loves me again, not just because she does love me but because she also feels a little insecure about herself. Afraid of what this disease and its after affects can do to a relationship. There are plenty of stories out there, we have heard time and again where the husband/wife has left their spouse high and dry. Marriages of years are dissolved because two people are no longer on the same page. Time, distance and illness erasing years of love, honor and cherish! It is the saddest indication of our throwaway society transcending from disposable tangible objects to human characteristics. I cannot even fathom throwing away our marriage over this bump in the road. When I look in her eyes and see her smile I only see the woman I married many years ago, not the woman she claims to see every morning in the mirror.

Last night as I slept alongside her, humidifying oxygen machine loudly pumping in the background while sounds of her wheezing, gurgling and occasionally gasping for air filled the room. I wondered what she was dreaming about and if she was comfortable enough. I wondered how I could make this transition easier for her, whether there was something I could do or say to make things better, give her the confidence she needs to go another day away from her family, help her to see there is a light at the end of this very long tunnel while also reassuring her none of us are going anywhere. While I lay there worrying about everything, she slowly reaches out, hand searching desperately and when she finds my hip, she takes a deep breath, gives it a pat and is right back asleep with a slight smirk on her face.

I don’t need to do anything. I just need to be there. That is the answer.

I quietly whisper not to worry, I love you too….

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