Tag: Spouse of a Leukemia Patient

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…

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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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The Barn is a great place to think.

theycallmebetty3 Comments

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Sitting in my barn this morning listening to the horses eat while chattering with each other, the sun crossed over with warmth entrenching the very entrance for which my bum was planted. Smiling at a state of relaxation which overcame my body, a bit of gratitude for all God has placed before me enveloped my being.

And so I pondered…..

Staring at standing water, which was everywhere, in times of past my frustration level would have risen. Instead I am pleased, for even though this means mud all around and frustrated horses it equates to much needed water and lush turnouts in the spring.

It was a heavy soaking rain and a portion of one of our barns that for years no matter the adjustment would flood instead remained high and dry after a summer rebuild. We are slowly gaining ground and this quirky piece of land will continue to challenge us, but seeing the west side high and dry was a huge win! My arena is a small lake, yet the water allows me to see where it needs to be floated and readjusted creating a better arena next year to ride and train.

The back piece where we began building a roping arena before Ms. Jacy went into the hospital has held up perfectly with water shedding in the direction we planed the ground. This means come spring we will add the permanent footing with no adjustments and before you know it the long summer nights will be filled with horses, people and fun. The way it should it be.

I am thankful for the people God continues to place in my life.

We are not supposed to agree or get along with everyone, that would be insane. But as of late I have learned to forgive, forget and understand that many times the problem isn’t with them, it is with me (short of someone intentionally hurting you). A person who rubs you wrong or continually pushes your buttons is who they are and you cannot change that so (as I tell my children) when you are wits end remember that and understand you are the one that has a problem with them! Limit your exposure, take your own stress away and appreciate them, for they have taught you how to become a better you.

An entire community has surrounded our family during these last two years and that support has seen us through many rough spots. We are very blessed to live in a town filled with so many loving caring people. I have sat and watched with pride as our little population has stepped up for the benefit of so many as it seems we are in a weird slump when it comes to survival. The numbers of those in our town reeling from the effects of Cancer, Leukemia, and unexplained tragedies is astonishing! Yet we come together, strap our boots on tight and march to help. Our town folk don’t help for notoriety as I have seen in some places, but because we are still small enough that everyone knows, everyone and genuinely care! There for it is done out of love. There is no greater reason to help.

If you build it they will come. When we built our first barn we hoped to have a bigger family here, a horse family of like-minded individuals who not only loved their animals but enjoyed the company of those around them in the barn as well. We have all been to those barns where everyone complains and the atmosphere is filled with unhealthy competition and all feels toxic. But I can say almost four years later I feel as though we have accomplished that goal. When I walk into our barn I am surrounded by an extended family. Fantastic people who are fun, caring and look out for each other without an inkling of malice or complaint. I am a fan of getting to know each horse and their owners, understanding their personalities, how they behave and react to any situation. We are filled with quite the group and they are all wonderful. My barn manager is also a huge blessing as without her drive and enthusiasm, especially during these very trying times for our family I am convinced without a doubt our place would have suffered greatly. She is my go too, a solid foundation for what we have that I can stand upon; we are very blessed indeed.

Rodeo is a big part of our lives and without an escape from reality into this world I love so, I am certain I would have gone crazy by now. As many of you know I love cutting horses! I love riding them more than anything in this world (thank you Wes and Jalinda) but with my wife being sick that has taken a back seat for the last two years. Rodeo is my son’s passion and to witness this foundation we gave him and our daughter in regards to horses and riding flourish and expand under the tutelage of many great caring and giving adults has been a Godsend for certain. Every weekend we pack up and head out is another opportunity for him/her to reach their goals, take another step forward in competition, and to meet new people even if to only shake a hand and say hello. The rodeo family is huge and they all look out for each other. It is amazingly fun to see so many adults come together for the benefit of not only their children but everyone’s children! Offering help and support while coaching them hopefully to the next level. For me, to be able to help on horseback during the cuttings and in the chutes with other friends during the roping events has allowed me to cheer on so many kids while still feeling like my normal horseman self. To share in this experience is like no other! I hope other parents see it the same way when they are tending a gate, loading a bucking chute or pushing cattle through the chutes. It’s being able to pass on your knowledge, your love for the sport, your passions all while doing nothing more than being the support crew! It has kept me sane through this time of hardship. I thank every family that has adopted me over the last two years. Made sure I was ok, asked how my family and wife are, and ensured I was never excluded or left behind. It’s tough being the lone man out, even tougher when you think about how you can’t share any of these experiences with your wife, your son’s mom, but thanks to this new family I have become a part of I have never felt out of place or alone. I am truly blessed and thankful for you all…

My second family has been behind us all the way and staring here across our fields, I am thankful for the opportunity to do so. Being in the fire service is tough, long hours away from home (especially in the summertime) at times mentally and physically exhausting. But there is no other job quite like it. It also allows you to forge a bond with others like yourself. Living someplace else for a third of your life you become a family, and family always takes care of family. I don’t know how I would have been able to keep my head on straight without the love and support I have received from my fire department family. They have been there from the beginning two years ago, covering shifts, making sure my family is taken care of and always leaving me with these words no matter the time or place. “Whatever you need James” I have been humbled by them all.

Looking over at my dad’s house, I wish I knew it was going to be his last Christmas. I don’t why? It just is resonating with me that maybe we could have carved out more time for him between running around to the hospital and two separate families. I know there is nothing I could have changed and what is done is done. My dad and I hardly saw eye to eye on anything and he could be a touch over the top when he was cranky. But I just wish I could have told him one more time I loved him and given his frail old body a hug. Oh well, I am blessed they allowed us to move them here, where at least he died with his family around him and as we put the finishing touches on his memorial at the end of the month I hope he looks fondly upon all who come to say goodbye and know he was loved.

Staring at the back of my house I think of my wife. How lucky are we she is still with us today? She still hasn’t made it home and it has been almost 7 long months since we drove out of the driveway headed to Stanford for what was supposed to be at the most a 4 month turnaround. Once again the word family rings loud as without this tight, crazy group of misfits that we are I am sure without a doubt this entire process would have been a complete nightmare. Jacy’s family has been by her side every day. Helping with our children, jacy’s care and ensuring she is never alone. Her sisters have brought smiles and laughter and her step mum quit her job to care for her every day! The true definition of a strong family is enduring even the hardest of times and never faltering, no matter the circumstances. To her mom, dad, step mum, sisters and brothers I love you all and admire all that you are as a family. I feel very blessed to be a very small part of what and who you are. Thank you for caring for my wife.

I am also thinking about my oldest son. It has been quite the year for him. Coming home from Humboldt and deciding to join a local junior college to save money while helping me with his siblings. I joke he is my domestic partner, he thinks it’s funny, well not really. We are hoping Jacy is home before August and healthy so this young man who has placed his life on hold to live at home, help raise kids, while going to school can step foot upon Sac-States campus and finish his education. I worry about his ability to grow as a man trapped at home like it’s his senior year all over again. But it is a good deal, he lives for free, helps me and has no bills while going to school and working. Plus he has his beloved dog Cricket by his side! He seems ok after finding his grandfather in the driveway a few short weeks ago, but that is another thing he will live with forever. Thankfully Cody has very broad shoulders and seems to be able to handle a lot. A gift that will serve him well as he chases his dream to become a CHP officer. Blessed to have such an outstanding young adult for a son.

We will continue this fight, hourly, daily, weekly and monthly. Ensuring sanity remains while hustling here and moving about over there, remaining blessed and appreciative for all that we have and hold. Jacy’s fight is far from over. She is slowly regaining a bit of strength but no great progresses have been made. She is very comfortable in her new apartment and continues making her scheduled appointments at Stanford. She still has pretty severe GvHD of the lungs and is battling the very same condition in an eye. Today she is at Stanford getting poked and prodded while receiving platelets. She is also feeling the love this morning as her mom and step mum share the duties of caregiver and transport coordinators. Jacy wakes up each morning, wishes she was home, but is very thankful for her family and to still be here with us!

In summary, I guess it just comes down to what you want out of each and every day. These are things I am thankful for right here, right now. They will not fade away tomorrow or the next day, but instead be built upon, stored in the “forever appreciate” locker inside my head and used for the day when it’s my turn, to show some love, compassion, caring, encouragement, excitement, admiration, and humility at some point during someone’s day.

And for all of that I am truly thankful…

One last thought comes to mind.

You can curl up and die in the shadow of some perceived misery or gather yourself up, stand on your own two feet while learning, absorbing, adjusting and reinventing along the way.

One life right? So I have chosen the latter….

 

 

Have you ever heard???

theycallmebetty2 Comments

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

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

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

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

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

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

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

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

How many voices are in there little buddy?

Only one dad, but there is room for more!

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

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

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

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

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

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

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

buckle up

A Conflict of Emotions

theycallmebetty5 Comments

Conflict

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

Verb: be incompatible or at variance; clash:

Emotions

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

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

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

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

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

But in reality, life is about turning the page.

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

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

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

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

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

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

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

A turning of the page…