Category: fatherhood

Love is something special

theycallmebetty3 Comments

Yesterday I sat with my wife on her hospital bed. Leaning into me we listened to others talking in the room and I staring longingly at her once again realized I am a very lucky man.

It is very easy to fall in love. The world is filled with interesting, beautiful people who intrigue and excite our lust for closeness. Each person’s definition of love is different, thereby allowing varying levels of intimacy amongst those parties involved. There is love acquired over time, love by design, and love at first sight. There are people who know a particular person is the one for them right away and while pining away for their affection develop love through mutual interests. It takes a special person to not only peak those interests but keep them thriving. A person who is willing to walk side by side supporting and surviving every possible situation one could develop or live through over time. For you see, love is not for the faint of heart or quitters.

There she sits. Yesterday while staring at her it came to me that I missed her more than I let on at times. Everyone at the hospital gets to hear her laughter, see her smile and relish in her constant silliness. All the things I took for granted or at times bothered me because of my own selfish moodiness I now longed to have back in my life on a daily basis. I was actually jealous of their ability to bathe in her good Karma.

Today someone sent me a picture of an actress on a current show (I won’t give the pleasure of repeating its name because this show is sheer poppycock) and stated she looked just like my wife! I dismissed it and then after coming back to this picture three, four or five times it dawned on me they were right! Just like that my selfishness missed her hair, her eyebrows, her eye lashes, and her round face with make-up, wearing a slinky dress on date night or goofy overalls on the way to school! I miss the way she smells, her choice of lotions always leaving her skin smooth and soft. I miss her holding me tight while dancing, whispering in my ear “I love you”. I looked at the picture of this actress over and over and I yearned for the wife who at one time didn’t have Leukemia.

I am a very lucky man

Most people felt that way at one time in their relationships but having grown used to their partners they no longer feel a longing deep inside for their significant other. Time, life, work, children and school have robbed them of time they should have spent with each other, instead creating a divide and conquer relationship which ultimately leads to a divided relationship.

I long for her to come home. I hate leaving the hospital, I want to stay there all the time. To hear her laugh between coughing and vomiting. To watch her smile even though the news she has been told sucks. To hold her hand even when she feels as though she is a thousand degrees. To walk with her down the hallways even though she must have help from a nursing assistant. To sit and eat lunch like two old people with no teeth! She with soup and me complaining there isn’t enough candy in the drawer.

In the past we too were a divide and conquer relationship! I divided to conquer and she wanted us to handle things together. She never gave up on me even though there were many times she could have, many times I may have needed to talk her into one more chance, she calmly continued loving me. Stubborn and tough she never ever gave up, she always knew that even though I was going to fight, kick and scream, I would come out the other side, wiser, gentler and more giving.

That is why it’s my time to be there for her! I know she is kicking and screaming on the inside! So I keep her going, telling her it’s going to be all right while showing her how to remain calm, think things through and understand there is a better tomorrow for her waiting. When this is over and she comes home she will have known I never gave up on her, I calmly helped her to understand it is ok to feel sad, ok to feel frustrated and ok to want this all to end as long as you vent it all out and then restart towards the finish line. She is fighting hard, but she is not fighting alone. She is not superwoman, she did not become the fighter she is today without losing a few rounds in life. She will come home knowing I love her with all my heart and soul, and I am thankful for all she has given me.

Our lives will never be the same. Leukemia has made sure of that. But what our life will be has yet to be written. An open page awaits us and as much as I long for the wife of days gone by, I cannot wait to see what life has in store for us as a team, a couple, as friends who are lucky enough to be married to one another.

Like I said; it is easy to fall in love, staying in love is something very special indeed.

images

She shines…

theycallmebetty4 Comments

imagesCAHVQX1X

You pass by her or someone just like her on any given day. A smile, a wave, a kind hello. Sunlight radiates from within, bringing warmth and security to all who surround her. A light, a ray of hope, a beacon in the fog, an uplifting hand when you are down. She sees everyone and everything, never letting even the smallest of details, events, emotions, or troubles pass by her watchful eye. Why? Because she genuinely cares. Her storms can rage like the mightiest of hurricanes soon settling, defusing until rest comes upon a peaceful shore. Sunbeams litter the landscape in its aftermath revealing a renewal of all surrounding her. Of course this is what she wanted all along, for she knows exactly how to get her way.

Until now.

Jacy has been tempted time and again with promises of freedom only to have her body veto. She remains in room 41, locked away from the world she knows, the family she loves, the friends she adores. Doctors come and doctors go, all with the same agenda, to heal this woman and send her home where she belongs. It is not for a lack of trying, or because they wish to keep her secluded for scientific purposes, on the contrary, like any professional athlete these doctors hate to lose. They take their jobs very seriously and it shows. To make matters worse for this crew of cranial geniuses, they just so happen to like her. There isn’t a one of them that doesn’t like my wife and do you know why? Well first of all if you do know her personally then that was a moronic question. But if you don’t, if you don’t know my wife then reference the above material. For it is all true.

The other day when I arrived her room was filled with attending doctors and students. They yammered on about good news here and not so good news there, how if one thing happens we may have other options and if another happens how options would be limited. Covering bacteria, viruses, internal bleeding, and further medications. Standing in the corner gazing upon the herd like a pie eyed cowboy it amazed me that with all this information she still smiled and said; thank you. She made jokes about the bad and quipped about the good. She never ceases to amaze me.

Her light, her inner light is always trying to shine! The internal batteries may be faltering a bit but she somehow generates enough power to smile and say thank you, to everyone or anyone that will listen! She strains to speak at times but it doesn’t stop her. She is fighting so very hard to live, to move past this episode in her life, to come home and see her children grow up! Having now been incarcerated inside E block for 127 days, she inspires me daily. I hurt all over, I can’t sleep, I am eating but not well, yet no matter how sorry for myself I begin to feel all I need to think about is the woman who gave herself to me, withered away to nothing but skin and bones still smiling, still saying thank you, still striving to make someone’s, anyone’s day with kindness and love.

Meningitis

Meningitis is a relatively rare infection that affects the delicate membranes — called meninges (men-in’-jeez) — that cover the brain and spinal cord. Bacterial meningitis can be deadly and contagious among people in close contact.

Viral meningitis tends to be less severe and most people recover completely without specific therapy.

Fungal meningitis is a rare form of meningitis and generally occurs only in people with weakened immune systems.

Yep that’s where we are right now. Meningitis, some bacteria formed upon one of her heart valves, a still bleeding bladder and now to make things more interesting she has begun having bloody stool. Today I believe she needed 5 blood transfusions. Every time this woman gets a leg up, something kicks the good leg out from under her. Two weeks ago we were laughing and counting down the days until outpatient was achieved. We are currently sliding backwards. I am not sure if we are back to square one, but it sure feels close. It has to feel like an impossible mountain to climb for my wife, yet she rarely shows it.

Monday when I arrived after listening to the where too’s and what fore’s spewed forth from the doctors with delicacy as to not upset or misinform I took a seat. Eyes heavy from a lack of sleep, brow furrowed after looking at my wife’s soft, doped up face. My shoulders slumped with the weight of it all and I did what any other rational husband would do at a time like this. I passed out. Yep that’s right! No sooner did I exchange pleasantries with everyone was I crumpled up like a used napkin left wedged into the furniture. Saliva dripping from my mouth, my body off kilter hard to starboard, barley able to stay in the chair. An hour later I awoke to see family members leave as my wife moved in and out of narcotic consciousness. Making my way over to Jacys big green auto reclining chair I rendered a hello and a kiss on her forehead. She asked how I was, I replied tired. She mumbled me too and both of us passed out again. This time for three and half hours. Somedays it’s all too much.

She contracted a fever that day and it started a ball rolling that just pushed her even further away from outpatient care. I was informed this morning she had in fact contracted meningitis as described above. What the hell? Why can’t she get a break? Why can’t her body just let this all happen so we can take her home? How long do you think her sun will continue to shine kept captive in the confines of E wing?

I worry about so much, every day about so many damn things. But of all the things I am worried about, I worry most about her ability to stay positive and keep those rays of hope alive. To shine brightly, not letting all of these repeated setbacks snuff out that light. I am so terribly worried..

I pray God knows what he is doing..

When a mullet is more than a mullet.

theycallmebetty6 Comments

2

It came from my mouth like venom through a snakes bite. Over and over again I struck, not just during one opportunity but through countless encounters. My victim continually wandering into my lair, setting himself up for attack, never backing away but every now and again wincing just a little. It was cruel and at first unintentional, but intentions can change with the wind, leaving the recipient wondering what the hell. Soon every attack had intention and meaning, usually in front of others as if it made me a better person for calling out my victims perceived flaws. It didn’t. My strikes were evil, demeaning and showed that I was nothing more than a full-grown bully. Others would join in and like a pack of hungry dogs we feasted upon our victim’s distress. Gnawing, tearing away at his very fabric, and never once thinking about the consequences or where it may leave him emotionally. All in the name of the past, our perception and what we felt was humorous.

Last night, awake, staring at the ceiling, my mind raced over the last few months and how hard it’s been for me to keep mentally strong. Focusing directly on each child’s needs, where I may have succeeded and where I have failed. Wondering about the future and what it holds for this family I continue trying to plan the next step. Our children will need their father to be overly understanding as emotions are high. My game needs to be spot on as to not let them get away with things they shouldn’t all while easing up just a bit allowing them to feel whatever emotions they feel in regards to their mothers absence.

My daughter and 15-year-old son have presented the largest challenge.

Parker knows who he is and is very comfortable with himself. He tells you how he feels and makes no bones about you overreacting to any portion of his mental/physical/educational progress. His mind in some areas is a bit regressed while in others he is wise beyond his little 10 year old years. Lately though school has been a significant challenge for him. Myself, the school and a dear friend who has been assisting him at home have all come up with a solid game plan to keep him in play. We want him to rodeo badly as we think it will be a good distraction and it is after all what we do as a family. He wants nothing to do with rodeo and fights us at every corner. Frustrating to say the least.

Jessica my 11 year old daughter is coming into her own. Straight A student who always strives to please. She is currently expressing herself by being defiant, to everything, and I mean EVERYTHING! She has a problem controlling her weight, it is a giant burden for her that she takes very seriously. Since mom has gone back into the hospital and been gone for these four months I recently found she is sneaking food at night again. A sort of coping mechanism for her emotional status. She hides the food out of fear. Fear that she will get in trouble for eating after hours. There was a time when this was a huge issue in our family and we even went as far as building caged doors for our pantry to keep not just her but all our little vultures from eating us out of house and home. She is struggling hard, not just with the eating, but back talking, arguing, and picking fights like a drunken sailor with only hours left on shore leave! Somedays she marches around with her fists all balled up and you just know, like a back alley brawl it’s about to go DOWN!

Our rodeo cowboy Jake has also been “bucking” (see how I did that?) the system as well! He hits everyday toes turned out, hand locked tight ready to turn out and hit it hard. More times than not he hits the dirt hard, but the boy saddles up and just keeps trying. Jake too has been working at finding his place amongst all of this family drama. He carries a lot of responsibility when it comes to the ranch and he is such a large man sized boy I often forget he is just that; a boy. He struggles with his grades, constantly. He is also struggling to make the right decisions when it comes to friends and after school extra-curricular activities. We have all been there and I think it’s why we want better for our children. I have made no secret about my past, about my high school experience. I chose the easier way out and I need them to learn from those mistakes. Taking the easy way out put me close to ten years behind in life. Unfortunatley like his father he has this need to experience things, to learn the hard way, and it scares the shit out of me. We have been butting heads very hard over the last few weeks to a point I feel like we were going nowhere. Lately besides grades, his behavior and his decisions when presented with an opportunity to run astray with his friends have not been good. I have also been riding him pretty hard about his new, old school hairstyle. Emotionally he looks like a beat dog.

So here is where I am going with this whole thing.

Today as we are preparing for a family visit with Ms. Jacy my gander hit the fridge. There upon it is 20 or so pictures of our family from over the last two years. Do you know what I saw? Our kids, our happy well adjusted, personable children. Smiles on their faces, hugging their bald mom, laughing with each other, holding up trophy buckles, works of art, hugging the dogs, yes the dogs are family too! Our children that I spent all night worrying about how I was doing as a father all looked ok. Each one showed their own style! Their own version of who they are at the very moment a shutter froze them in time. I saw four individuals, four young people choosing their own paths regardless of anyone else’s wishes and doing it with confidence. It was an amazing moment filling my heart with joy! But you know what stuck out the most? Jakes mullet.

Jakes mullet stuck out like a white flag waving from the trenches! Telling me it was time for me to wave that flag, surrender and ask forgiveness. For you see each one of our kids has something I constantly pick at, like a good parent should! You know, a slight course adjustment or suggestion to help them understand they aren’t fitting into a classification, a social mold if you will. A couple of things dawned on me in that very moment. One, why should our children fit into any classification? Are we not supposed to allow them a certain freedom to find out who they really are? If that means some heartbreak now and again then so be it! It will teach them how to handle themselves in tough emotionally charged situations. And two, no matter the other out of the norm issues I had in fact been particularly hard on Jake and for what? A chosen hairstyle?

When Parker said no to rodeo, claimed art as his thing and took to ditching a ball cap in favor of a flat brimmed drivers cap making him appear very artsy in deed, did I scoff at the notion? Hell no! In fact it is 100 percent ok that he hates rodeo, horses and all that goes with it. That is his choice. He has tried it, given it a good go and ended up in the hospital a few times! Trust me his thought process may change at some point and if it doesn’t so be it! That’s who he is, we love him for it and by the way the kid is very creative! His art shows a caring heart, personality and great love for all things.

When Jessica started stealing food from downstairs to hide in her bedroom. Eating at all times of the night even though we spent countless hours chastising her for such behavior did I freak out? Well YES I freaked out! I freaked the hell out! Worried my daughter’s weight issues would expand, she would be uncomfortable with herself and have huge body issues as the result of bullying! But somewhere along the line I realized the problem was not all her, part of the blame was us, more importantly me. So I pulled her aside and let her know it was ok to eat. If she felt hungry, just eat, take what you want and eat it. My only rule? Let me know you are going to eat so I can approve it or find you an alternative. She looked shocked as though the words coming from my mouth were some form of cruel joke! But nothing shocked her more than when I told her as long she is comfortable with herself, as long as she can look in the mirror and love herself for who she is, then who cares what anyone else thinks. My job is to educate you, help you make the right choices and hope you come away a strong and confident woman. If that strong and confident woman is what society deems as overweight or out of the norm then tough shit! I told her I loved her and gave her a hug. She left with a huge smile.

One thing I have repeatedly told all my children is find who you are, embrace it, make the most of it, discovery is how you find yourself so that when you are an adult you can be happy with the person you have become and you will never shrug off reinventing yourself. Yet here I was tearing apart those very values by continually ridiculing, mocking, terrorizing and just plain bullying my son over a stupid haircut! Now let’s be frank, the mullet is hands down in my opinion the dumbest looking haircut around, conjuring up images of Billy Ray Cyrus in two sizes to small faded jeans jumping around like an idiot! But that’s just it, it is my “achy breaky” image of what that haircut means to me. To him it represents several of his rodeo heroes, men he looks up too, that he wishes to emulate! I am sorry that just isn’t a bad thing and if it is what defines him as a person right here, right now, then so be it! This is how he takes those words of advice and runs with them, learning, crafting and molding the person he wishes to become! Somewhere I lost that, somewhere I felt it was ok to tear him down over and over again. On the fridge there was a card with a picture of him with both long and short hair. You know what? He is the same kid! The kid I love for who he is, not what his damn hair looks like. Today I sent him this text.

“Hey, just wanted to tell you something that’s on my mind. I know things have been rough lately between us, I hope you are learning from each encounter as I am learning from them as a father. I believe you are trying your hardest in school so don’t let yourself down. Continue to strive to always be a little better for yourself, not for me. I realized today I need to lay off you about that damn mullet. I have spent my whole adult/fatherly life preaching to you kids to be your own person and yet I contradict myself by giving you crap! If that hairstyle defines you right now then so be it! I apologize for all the grief I have given you. I am proud of you for being comfortable with who you are and that is one of the most important things for any young man to achieve. Keep up the good work, have a fantastic day, I love you…”

He replied by saying thanks dad, it’s just a rodeo thing and I don’t care about the mullet grief. I am working hard on my grades and I love you too.

Maybe it was just me.

So bring back the mullet son, business in the front, party in the rear! Either way, a mullet, a few well-placed photographs, and a sleepless night all combined so I could learn when fatherhood crosses the line into parental bullying, ending with the discovery that your child, hell your children are really doing just fine…

The fight..

theycallmebetty5 Comments

She smiles whenever I walk through the door. Warm and happy, clapping her hands together with joy. As men and women we secretly hope our spouses are this happy to see us all the time, youth and a certain naivety lead us to these false hopes. We (husband and wife) eventually learn life will continually get in the way of how our relationships are portrayed within our imaginations. We have also learned over time that children, work, sports, school, social gatherings and general daily survival slowly tear down the very fabric our relationships were built upon when it was just the two of us.

Juuussst the two of us, we can make it if we tryyyyyy, just the two of us. You and I…

Sorry couldn’t help myself but C’MON!! You heard it too when I wrote it!!! Don’t shake your head no! You know it and I know it, you  heard it! Anyways….

Then Leukemia happens. It scares us to death! Just the sound of it. Leukemia. Yep it carries as much weight if not more than simply saying Cancer. Now we throw in remission, survival and cancer free. Re-lapse, Bone Marrow transplant, GvHD, success and failure statistics and well the emotional roller coaster of life and death drive you closer together. You begin to realize all the times you took each other for granted while expecting your relationship to never change or evolve. But it had changed. It had changed a lot. Of course nothing like you see on television, where there were secrets and you no longer spoke to each other. You know? Soap opera like stuff. No you both had settled into your roles as partners in this game of life. One handling the children’s education and transportation, the other handling finances, overtime work and building a future out of our property. The both of you sharing house and ranch duties, parenting, cooking, cleaning, laundry while you both try your hardest to equally dole out duties and discipline to our four ever needy children. Yes life can truly get in the way erasing the simpler times when you waited all day to see each other, then dreaded the moment you had to leave.

Every day I am home I cannot wait until I see her again. We don’t head out on a romantic date, no carriage rides, fancy dinners or moments alone in the park. Two people sitting sometimes quietly while the other sleeps, holding hands waiting for the next nurse to come in, ruining that moment of normalcy. I have said before I believe holding hands is the simplest form of compassion. These days it feels as though the nurse has walked in to interrupt us doing something we shouldn’t be, like teenagers hiding out in the barn. Yet we are simply holding hands, it is all we have.

6-7-8 hours within those four walls disappear in flash! I hate leaving! I hate leaving my girl behind! Walking out to the car I have learned to transform my emotions, change my demeanor, and count my blessings. For the easy road would be to remain angry at someone, anyone for what has happened to my wife. The once vibrant, larger than life woman has melted away to around 115-120 pounds depending on her water weight that day. Where toned tan legs once powered her successfully through a mini triathlon, two long bones remain, not one muscle in sight. Where long, gorgeous, curly hair rained down over her shoulders, a bald head remains. Her gleaming eyes and gorgeous face trying to peer out from under swelling and drug induced exhaustion. An athletic, active woman who rode horses and ran the perimeter of our property now worries about getting out of bed and walking a little farther down the hall every day. But I turn that all off as the building disappears behind my shoulders to focus on the positives.

She has beaten the odds so far and is still alive.

Jacy still has fight, lots of fight! Which is why she continues beating the odds! This woman, this beast wants to participate in double PT every day no matter how exhausted! Some days it doesn’t happen but she still tries! She continually defies nurses’ orders by getting up on her own to use the bathroom even though it is against protocol. Sitting in her chair for hours, sometimes all day as opposed to just staying in bed, waiting for things to change. Eating even though she has no desire to eat, drinking plenty of water and nutrition drinks which taste yucky. Using large rubber workout bands when she does stay in bed, hoping any little extra helps her to get home that much faster! Yep she is still fighting, like the angry Cuban stuck inside her, she is fighting and fighting hard!

So instead of moping on the way out the door, worrying about whether or not she will make it, I think about what and whom for which this daily battle rages. She fights first and foremost for her children, there is no doubt! Then she fights for her family and friends. She wants desperately to be there for all of your life changing events as a daughter, niece, aunt, mom and friend. It is what drives her forward when she begins feeling low.

Lastly she fights for herself, for you see she knows if there is no her, there is no me, and if there is no me, there is no her. Our love for each other has stood the test of time and will continue to do so. So she smiles when I come through the door, happy and giddy just to see me for a little while.

I sit down quietly, kiss her through all my hospital garb, and hold her hand. We smile, laugh, and talk. The hospital melts away for a few moments and I no longer see the woman waging war, but the soft, gentle, warm spirit I married 14 years ago.

We are winning……..

jacy stanford

Have we turned a corner?

theycallmebetty11 Comments

Unknown-11

Everything is going to be alright, maybe not today, but eventually because beautiful things happen in life when you distance yourself from the negative and have faith.

Are we turning a corner? Has our journey gone the distance or is this just another phase filled with false hope? Will we be rejoicing or hanging our heads, heavy with burden and frustration over continued grief?

It appears as though Jacy has turned a corner in her treatment! Day by day, hour by hour, as her doctors continue slowly (and I mean turtle slow) reducing her steroids, she is feeling stronger! Her breathing has cleared up immensely, her intestines are somewhat co-operating, and although she remains on a steady regiment of Lasix, her swelling appears a bit reduced.

Walking these hallways is still a struggle but she is walking the entire hallway, not just to the door and back within the confines of her room! She is eating three meals a day! Although bland food and only in minute amounts it is a positive sign indeed for it translates to her body accepting nutrition!

Jacy’s doctor came in yesterday afternoon to announce they believe it is time to drop her dosage of Jakafi (experimental drug). This is huge! It means she is definitely moving in the right direction. It also means she is slowly becoming one of the 30% that survive this new experimental treatment! Her doctors will begin tapering dosages slowly and in segments. Starting today they will cut a few milligrams from the Jakafi then sit back and watch for 7-10 days. The fear being a relapse of GvHD (Graf vs Host Disease) which would put her right back at square one! Of course no one wants that, but at some point the process needs to begin and everyone on her medical team feel with all the positives lately, now is that time. Fingers double crossed!

Steroid dosages will also be slowly dropped again. She has done very well over the last 10 days since her last dosage adjustment which has been very encouraging. Jacy’s skin, still mottled with red marks, looks more like a giant stretched sunburn than the blistered, peeling abnormality previously covering her body. The doctor says her skin is healing very well and looks fantastic! Her skin looks so well he also announced there will be no more photopheresis treatments either! Such good news and having seen the previous skin condition I would agree with the doc, it does look fantastic! Don’t any of you become jealous when this is all over but she will have the skin of a teenage girl! Of course what would you expect, treatment is only a couple million dollars and you may die, sooooo…

Her immunosuppression drugs will also be adjusted as they fine tune its need in regards to controlling her new white cells and how they operate! This combined with a steroid reduction should allow her vision to improve over the same 7-10 day period barring any type of re-lapse. Her periods of visual acuity have improved, but she seriously cannot wait to be able to see again 100%. I tell her no hurry, she may end up with perfect eyesight and realize what a mutt she married and dump me! Ha!

So are we turning a corner? Does this nightmare possibly have an end date? I think yes.

Yesterday when I arrived her brother, mother and step mom where there and we all had a fantastic time laughing and joking about everything from family and friend dynamics to the absurdity of hospital existence. It was great to see her smiling and chuckling as though it was a normal family gathering at any one of our houses for any number of reasons! The only thing missing was good bbq and a bottle (or two) of wine. I felt great when I left her last night. I knew with all the energy spent with us she would most likely sleep well.

From the beginning I have touted faith. It is not something I just say, it something I believe! Whether your faith is absorbed in religion, a god, a spirit or just a continued faith in yourself. One should have faith, it helps quell any negativity and although I am also a realist, having faith has allowed me a better grasp of working my way through my emotions when they arose.

Does this mean I am no longer scared? No. We still have a very long road ahead of us in regards to a full recovery. In reality we both will remain scared for a very long time to come. A simple cold, cough or sniffle. Her feeling run down, tired or lethargic. Losing weight or gaining for no reason. Any mark, blister or lesion. All these things and more will have us running back to the doctor at a moment’s notice. Hopefully as time passes these feelings will pass as well.

For now, Jacy needs to get to the next level of care which involves her leaving the hospital for her dads house where she will begin daily outpatient care treatments right back at Stanford. She will be with family, in a familiar setting, living in an apartment that we have stayed in numerous times and that is a humongous boost for morale. Not just for her but the entire family.

The next level after three months of outpatient? Come home! I cannot even imagine what it will feel like for her to walk through our back door, live in her own house, sleep in her own bed, and not rely on others for care after possibly 9 months? I am positive she will need to work her way through multiple emotions associated with being gone for so long from her ranch, children, animals etc…

There has been nothing easy about this journey for anyone. It has been and continues to be an uphill climb. But when I think about where we are compared to a month ago, and how well she is responding to treatment in combination with her doctor sharing such good news yesterday? I say yes we have turned a corner and that uphill climb appears to be flattening out just a bit. None of us can wait for the ride down the other side of this crazy ass Leukemia ridden mountain!

Have faith, move forward, when you fall down get back up and try again. For if you have faith there is nothing to hold you back from success but you.

So to the question posed at the top of the page.

I choose rejoice….

calvin_and_hobbes_wagon

Up the Hill, Down the Hill…….

theycallmebetty6 Comments

IMG_1191

Up the hill, down the hill, up the hill, down the hill, using this reference explains our current extended BMT journey. Jacy’s progress as of late seems to be in an upward progression! So while we are currently running on a high, lets catch up and see where we are in regards to her possibly leaving the hospital at some point.

Here are the facts as we know them and hopefully this answers many of the questions I received during this last week.

She is eating solid food!

This is a good thing! No let me rephrase, this is an excellent stage in her recovery! The GVHD (Graf vs Host Disease) attacked her intestines and is the gravest of stages in regards to GVHD.  To help better understand what that actually means let me explain. Your intestines are filled with cells and follicles.  These cells and follicles take all forms of matter both solid and liquid, absorb and convert them into usable nutrients leaving any waste behind.  With GVHD your white cells (the new immune system) are working great, but they still dont quite recognize their new home. So whats a scared white cell to do? Well they form up and attack anything that freaks them out! Even with immunosuppression on board, these little buggers do a number on your system.  In this case her immune system attacked the cells and follicles inside her intestines, leaving her intestines looking a bit more like a solid PVC pipe. Smooth and clean.  Problem? She can no longer digest food, and if any food is introduced she will automatically bloat,  causing intense pain and constant diarrhea.

The Jakafi combined with steroids hopefully will allow her body time to regenerate new cells thus her new immune system will identify them as their own this being the only cure.  So eating solid food, albeit noodles, chicken stock or poached chicken is a sign we may be heading in the right direction.

She still cannot see.

Her eyesight is poor, very poor. Jacy’s eyes may clear up just enough to recognize someone for a short period of time, but for the most part it remains nothing more than a fuzzy white haze. This problem is derived from a combination of issues revolving around prolonged use of steroids, aconstant need for Lasix to control excessive fluid buildup brought forth from a mirage of IV’s she receives every day keeping her alive and drug induced diabetes. This issue is temporary (after 6 weeks now it feels like permanent to her) it will resolve itself over time.  We also understand she will have some form of permanent damage to her eyes.  This could be vision acuity issues; issues with her tear ducts, or both. She is going a bit stir crazy not being able to watch TV, more specifically Naked and Afraid!

She has developed diabetes.

Another issue being closely monitored as I slightly mentioned above. Drug/GVHD induced diabetes. In most cases this is a temporary side effect. It comes from your body’s inability to process anything thanks to GVHD. By having your nutrition constantly fed to you via IV against the wishes of an already pissed of immune system certain things happen and this just happens to be one of those side effects.  This is also temporary as the body begins to realign itself with a functioning digestive tract thus working more efficiently while producing a proper amount of insulin to help with nutrition processing.

She has massive muscle loss.

We all know and remember the Jacy who could teach two spin classes a day and sub for you in the evening if need be? Well those days are going to be over for a while; steroids are a nasty little business! Jacy has been bed ridden and in combination with all the medications including a massive continued dose of steroids, well there is nothing left. Jacy’s body has been reduced to half her size.  But here is the good part. IT IS JACY!!! Anyone who knows my wife, knows there is no way in hell she is going to stay down for long! Apparently her need to walk, move or exercise in any way forced staff to put her back on a bed alarm or pin her to her chair when ever she gets out of bed to sit upright for a while. She called me yesterday and with her best controlled Cuban temper explained in great detail that she is tired of being treated like a child! In her words: If I want to walk or get out of bed to pee gosh darn it I should be able to, right? RIGHT????

Yep that’s our girl, suck it GVHD, you dont know who you are messing with!!! Later that evening she called again to let me know her and George (nursing assistant) walked the entire quad. She was feeling pretty proud of herself and she should considering last week at this time she could barely move!

She has a bleeding bladder.

Jacy’s bladder has been bleeding since the transplant.  A side effect from some of the medications, it soon transitioned into an infection.  This little booger is tricky, as an infection it is to be treated treated with steroids and antibiotics. Some of these medications dont mix well with others, and Jackafi itself presents a new slew of challenges. Some medications make her blood clot, others will make her bladder spasm and then throw in Lasix creating a constant need for urination and her urinary tract becomes further irritated.  She could have a catheter placed but there is further risk of infection which we just can’t have right now. Another side effect becomes since she is losing blood constantly, she needs repeated transfusions of blood, or just platelets, either way, there is constant discomfort from these ongoing issues.

How is she being treated for GVHD?

There is a myriad of drugs being used to treat GVHD including what I have mentioned previously such as steroids, immunosupressors and the Jakafi. But she is also receiving Photopheresis. What is Photopheresis you ask? I found this little clip from the Cleveland clinic which I feel describes it best.

What is photopheresis?
Photopheresis or extracorporeal photoimmune therapy is a procedure that might be recommended by your doctor to prevent or to treat graft versus host disease (GvHD). This procedure offers another way to try to suppress the donor lymphocytes (type of white blood cells) that stimulate immune reactions and aid in the development of GvHD.

How long does the procedure last?
The photopheresis process lasts about 3 to 4 hours. You might require several photopheresis sessions before the desired results are achieved. Your doctor will develop an individual treatment plan for you based on your disease.

How is photopheresis done?
During photopheresis, blood is taken from one lumen of your central venous catheter and processed through a cell separation machine. This machine removes and treats your lymphocytes and then returns them and the rest of your blood through a different lumen in your central venous catheter.

When your blood first enters the machine, it is mixed with an anticoagulant medicine to prevent it from clotting. Then, the cell separation machine collects the lymphocytes from your blood and mixes them with the drug 8-methoxypsoralen or UVADEX. This is a photosensitizing agent that becomes active when it is exposed to ultraviolet light. The lymphocytes and UVADEX are next exposed to ultraviolet A light inside the machine. Lastly, the lymphocytes and the rest of your blood are re-infused to you through another lumen in your catheter.

How can this procedure help me?
By treating your lymphocytes during photopheresis, their function is altered. When the treated lymphocytes are re-infused, they will stimulate an immune response in your body to fight the development or progression of GvHD. Your doctor might use photopheresis alone or in combination with other treatments.

Everyday is filled with tests, procedures, blood draws, medications, and more. To say I think she is the strongest woman alive is an understatement. Of course there may be a bit of favoritism.

How long until she becomes an out patient?

We still dont know. Our families met with her new doctor on rotation last week. His main goal is to keep her going and hopefully we see a change. She is walking a line right now and the team’s goal is carefully assisting her by balancing all treatments and procedures without upsetting that balance.  She is being weaned down a tad from the steroids in hopes her body picks up the slack and begins to strengthen. So far it is working perfectly. Our main goal during treatment remains the same. NO INFECTIONS! One small infection could upset everything and we could be back to square one quickly.

Once Jacy is able to process solid food on her own 100% we know outpatient care is not far behind.  So far she has beaten all odds stacked against her! (as if any of us thought differently) And she struggles some days to stay positive but for the most part it is one day at a time and if she makes any physical progress (sitting for an extended period of time or walking) she feels like she is winning! This of course propels her into the next day!

She loves the cards, letters and prayers, they keep her smiling.  (We all know that smile, if you have forgotten look no further than the top of the page, it why I picked that picture) She understands each and every one of you are thinking of her, praying for her and feels that love all the way at Stanford.

Personally I remain stunned, and so very thankful for all the help we have been receiving. The generosity of so many is a bit hard to comprehend at times. We are just like any other family who has good days and bad. This community has gone way beyond for ours, I pray daily for the ability to handle it all, to keep a positive outlook, to stay open to all forms of assistance (something I am not good at) and to not let this tornado of a life overwhelm me. I also pray for those going through the very same struggles, both personally and for those they know, for you see something like this doesn’t just affect those stricken, it affect their families, friends and co-workers as well. And with that I am saying I pray for all of you.

We have but one, life, how we choose to live, behave and respond rests solely on us as humans and within our beliefs.

I believe in having faith.

Love to you all~ Betty

When a shower isnt a shower….

theycallmebetty6 Comments

My chores are finished, children, horses, goats, chickens, ducks and dogs have all been fed. Walking onto the rear porch I look back as our ranch lays peacefully under a dusky sky, the sun bidding a final fair well. It is perfect.

Everyone has their own end to the day, a moment when the world stops and we are able to take a deep breath. Walking into the house the kids are chatting it up after dove hunting, and a hum of laundry shaking our houses foundation rattles off from the basement. Taking a moment to converse with each child, I relish in understanding the what, where’s and how’s of each of their days. My oldest has done another fine job of making sure homework is finished for me to check, their stomachs are full from the wonderful meals arriving and they have showered, washing away the days grime.

Ahhh the shower. Hot water rushing down my body, soap, a shave, it is all I look forward to each and every night. Its cleansing properties revitalizing me, relaxing my stressed out brain and allowing me the comfort of shorts and a t-shirt. My idea of pajamas.

I never realized just how much we take for granted the prospect of having a shower. While in Haiti showers were a luxury, yet our group was allowed a cold bucket shower each and every night during our first trip. The second trip to Haiti a year later left us an even greater asset, actual bathrooms with tiled showers! So we never really lost that sense of what it is like to not shower, to be clean.

Now there is always camping but I say; Camping doesn’t count! Most camping trips it is a rite of passage to see how many days one can go without showering! Of course being the manly men we portray ourselves to be, it never matters what our mouths and egos have arranged for a final shower date! In the end our wives, girlfriends or significant others ultimately pull the “you stink” card demanding a shower now or sleep alone, outside with mosquitos the size of VW Bugs. Yes dear!!!

Yesterday morning my wife called me. Now first off I was super excited that she could see the phone well enough to locate my caller ID! But then she tossed out this very exuberant statement: I took a shower on my own today and it was heaven!

You see Jacy hasn’t been able to see or get out of bed due to lack of muscle strength and motor skills, so to hear her say that she had in fact taken a shower on her own was, well, heart stopping! After congratulating her my first question was did you need any assistance? She said no because she was bad ass that way! We laughed and while she recounted every water drop and how wonderful it made her feel as she sat there basking in its warmth I thought to myself. How long has it been?

Before I could ask, she blurted out how much she missed being able to shower for herself, to wash herself, to feel independent enough to care for herself! It had been roughly 17 days of sponge baths, bath wipes and lots of cream or powder. 17 days of having multiple people handle you, wash you, and manipulate your body for efficiency while undertaking this task. Yes the nurses there are phenomenal, yes they care for each and every person like they were family. But when you barley have enough energy to eat let alone wash yourself how quickly would having multiple people handling your hygiene get old? Not to mention leaving you feeling just a tad bit defeated?

She went on and on, it was awesome to hear her happy, her voice still cracking, sounding horse and dry, but happy. Who knew the simple act of a shower (something we take for granted) would become an extraordinary event, allowing her to regain control of her life if even for just a few moments.

Which leads me to an update: Jacy is getting stronger, her doctor told me the day before yesterday they will continue weaning her off of steroids. The experimental drug Jakafi is still holding its own which is a good sign for now. There is still a plan B drug in place should there become an issue with continued use of Jakafi. Her eyesight remains blurry with bouts of clarity. Even though she won’t recognize it out of sheer frustration, it appears to me as though she is having more moments of almost being able to see than not, another good sign! Random misspelled texts lend proof to my theory! Her sense of humor is improving with each little victory and as of this very moment she is on a phone call with a BMT, GVHD survivor who like her had stage 4 GVHD, was in the hospital for a very lengthy stay and in the end he survived. He is a teacher who is currently back at work and living his life to the fullest. More to come on what transpired during that conversation. She is a fighter, and doing so the only way she knows how, with grit. Thank you all once again for the continued support and prayer.

And away they go!

theycallmebettyLeave a comment

I have spent the better part of the evening reading each and every emotionally charged snippet about children heading off to college. I went back and re-read what I wrote about Cody leaving last year on my blog and found myself choked up all over again.
To every one of you feeling the pain of having to say goodbye tomorrow or the next day or next week understand this; yes it hurts, it is going to hurt, there is no way around the pain of watching your child walk out the door alone. Yes it is a good thing, you have done your job it is time for them to shine! No you don’t have to be happy about it, no matter what anyone says to you, this is your child, your emotions, let those emotions flow freely, you have earned it!  Yes you are going to miss them terribly along with their dirty laundry, snarky comments, goof ball friends and most importantly you are going to miss just sitting with them sometimes not saying anything at all. It is hard not knowing what they are doing or how they are feeling along with  constantly wondering if they are safe,  after all that has been part of your existence for the last 18 years! But in the back of your mind you know you have done your job, so trust me it will be ok. These children or now young adults no matter how we may perceive them are the very best part of us heading out to make their marks upon this world and that is a good thing. They will come home and they will leave again, but know this, each time they come home they will be a little different, a little wiser, a little more educated, and a little more like the adult you always hoped and dreamed they would become. So while you are grabbing for tissue to sop up the misery, take your free hand and pat yourself on the back for the best my friends is yet to come! I promise!

Buckle up Buttercup!

theycallmebetty8 Comments

buttercup3

Timidly pullIng down the strap, buckling in tight, yes my nerves are raw, emotions high but with a feeling of optimism coursing through my veins. I knew this was going to be a hell of a ride, after all I had done my homework, read the memo’s and calculated all risks associated with this procedure. Life is filled with the unexplained, the where’s and whys, but life can also be explained through formulas, numbers, and equations the basis of fact.

In my world I live on a combination of hard facts and grey areas derived through trial and error, or accumulated experiences. Some days bring solid steadfast results, other days bring gloom and despair but mostly we consistently work within that grey area of operations, teetering between facts and gut reactions. There is something to be said about going with your gut! While floating in the cranial membrane of greyish indecision it has always worked well for me.

So today whilst arriving at Stanford to meet with Jacy’s primary doctor, I really had no questions as through many days and nights absorbing information, regurgitating said information for consumption and pondering the wealth of answers in regards to my wife’s previous, current and future care I felt fairly certain I was right where I wanted to be mentally. Oh but how doctors love hard facts….

Buckle up buttercup this is going to be one hell of a ride!

That’s all that kept running through my head..

Sitting in a room specially designed for such occasions I actually began to feel a bit nervous. I have been here before and I never really like these meetings. It is probably the basis for my need to overload on information, know everything that is happening so as to never be caught off guard. The room was filled with Jacy’s dad, step-mom and myself seated across a table from the doc, his assistant and a social worker. Jacy’s primary nurse joined us a few moment later quietly standing over my right shoulder. For the next 20-25 minutes this room reverberated with every question a father could think of in regards to his daughters care. In return every explanation the doctor felt needed to be tossed onto the table and a few that were beyond what I expected were pitched as well. Once the percentages began flying around my nerves just went numb! 20% here, 70% there, combined with scary words like mortality, fragile state, and the ever popular response of “we just don’t know”. There were also positive words such as, fighter, strong, stubborn and holding her own. Many detailed analysis I already understood; some analysis I was vaguely aware of and had appropriately deduced an outcome, while every now and again something would be said that just blindsided me. But I suppose that was to be expected for no matter how much you prepare you cannot possibly know everything. As we concluded it felt as though we all walked away understanding a little more about the who, what, where and the why of it all. I also walked away with the utmost respect for her doctor and every ounce of care she was receiving.

Now I have long said that statistics are to a mathematician what a lamp-post is to a drunk; just something to lean on.

But driving home after weeks of feeling super positive (well except for our girls little outburst last Friday that sent me into a tailspin) and feeling as though my understanding of everything was solid; driving home I felt, well, I felt heartbroken. A feeling I had no inclination of participating in, yet there it was, like my chest was going to break open! Just plain old heart-broken. Part of me wishes I had never gone to that meeting, part of me wishes I didn’t understand all that I do, part of me wishes I was just a stupid, sheep of a husband, one who nods his head yes and no whenever questions are asked. All of me wishes I could tap in for my wife, trade places with her, send her home. I have known this was going to be a long rough road, I have known that from the start. It just got longer and rougher. I have always known my wife was a fighter, she is the toughest woman I know, but she is going to have to get tougher. We are no longer talking in weeks, we are talking in months. She misses her home, her life, her ranch, her children, heck even her husband! I miss her terribly at home and all of this is breaking my heart.

The good news is these doctors know she is a fighter, everyone loves her, and the nurses all look forward to working with her. Jacy’s spirits are soaring and she knows deep inside her soul she is going to win! GVHD is no joke it is life threatening, but her toughness, her tenacity to continually do the opposite of what is expected through statistics, that will power is what keeps her going strong.

To date; Jacy cannot see due to deteriorating optical nerves in conjunction with sloughing of inner eyelid tissue, so today they tried several experimental procedures hoping to alleviate some of her visual discomfort including placing an amniotic sac over the open eyeball. Do you think that stopped her from getting out of bed and walking with me this evening? Hell no! Her eyes burn, her skin burns, she has broken blisters and peeling over her entire body! You think she whimpered once about how uncomfortable it was or used it as an excuse to get out of physical therapy? Hell no! Her stomach is upset, she cannot eat solid food because the GVHD has extended to her intestines leaving her only induced nutrition arriving through an IV. Do you think that has kept her from downing chicken soup whenever possible? Hell no! Jacy’s all over body pain is so intense she is attached to a pump delivering morphine every 15 minutes just to get through the day. Do you think that stopped her from greeting every nurse, janitor, doctor or visitor with a beaming smile, telling them what a good job they are doing, or talking about television shows, laughing together like old friends? Hell no! She can barely talk at times due to severe dry mouth and lesions inside her throat. Do think that has stopped her from happily conversing with each and every person who crosses her path? Ok I know you know the answer to this by now!

Her enduring strength, positive attitude and indelible spirit are what’s keeping this mother of four, teacher, daughter and friend going strong. I also believe some faith is in there as well. Please keep her in your heart, she believes in all of you and says she can feel the power of prayer working every day.

We have a hill to climb, it is going to be long, sometimes really hard, bumpy and frustrating, but when you feel those helping hands of spirit and faith pushing you from behind you can’t help but make that final push over the top. Then buckled up, straps down tight we can finally let go of the bar, place our hand up high and enjoy the ride together.

stay positiive

Alone..

theycallmebetty4 Comments

Driving into Palo Alto towards Stanford yesterday was the first real moment of solitude I have felt so far. Things have been happening so fast there hasn’t been a minute for me to really contemplate being alone. Unless I am fishing or working on the ranch I dont particularly care to be alone, it doesn’t suit me well at all. My life is better when others are around who can laugh and joke about anything and everything. But here I was, alone, looking over at the passenger seat feeling its emptiness while maneuvering through traffic.

Then I thought about how alone my wife feels in all of this. Not in the sense of anyone coming to visit her or sit by her side, but as in alone?  You know, on the inside? As though this thing called Leukemia is somehow her sole cross to bear. We come and go, kiss her forehead, hold her hand, we say all the right things like; honey we are here for you, Jacy we love you, you can beat this awful disease, you are so strong, if anyone can kick cancers ass it’s you! But at the end of the day, when darkness comes and there is nothing but nurses poking, prodding, scanning and taking vitals signs while administering more medication, there is only her, alone, with this disease…

Yesterday was a difficult day for her, vomiting, restless, hurting, hard to swallow, mouth developing sores and constantly needing to pee! She could not get out of bed without an alarm sounding, sleep more than 15 minutes without someone needing to speak with her to reaffirm her name or roll over without being tangled in a spaghetti like mass of I.V. lines!

Her nurse yesterday was amazing! Sweet and kind you can tell she loves her job and the patients in her care.  She was always Johnny on the spot and I wasnt able to do anything for my wife as to do so may have been an insult to this wonderful persons tenacity; regardless though it was a revolving door of activity within the confines of her two person barley 250 square foot room and I dont know how any of them (patients included) handle it all.

I sat with Jacy for 6 hours and was only able to speak with her for a total of about 30 minutes as she would drop in and out of interrupted slumber.  She spoke about her worries in regards to her room-mate for which she has become attached.  She talked a little about hallucinations and talking to her room-mate in her sleep for which she only remembered portions. At one point she went to shower and needed three nurses to assist her back into bed as all of her medications hit her at once causing her to become dizzy and unable to stay upright.

Six hours went by like five minutes, I did nothing, I said very little, I held her hand and stroked her back. I read stories on my phone, looked up the history of Stanford hospital and reoriented myself with the entire facility. At one point during the day it became necessary for me to step outside and stretch my legs; my legs having a mind of their own took me right around the corner into the chapel. Sitting, reflecting, pondering and praying; praying for guidance and praying for Jacy to retain her inner strength.  Staying strong for our family has been challenging and I am sure Jacy feels those same pressures in regards to her children.  Its nothing we havent handled as a team before or wont handle in the future. Having the ability to walk in and find sanctity allowed a moment to breathe a little easier.

Walking back from the chapel my heart-felt lighter, my spirits raised a tad.  It never ceases to amaze me what a little quiet somber prayer time can do for one’s mind and soul.  When I returned she actually stayed awake enough to chat with me for a bit, kiss me a few times, then quietly drift back asleep.  It was all my emotions needed to quell any fears, it was all my heart needed to recharge for the next day. It was all my body needed to lift up my shoulders and carry on a little longer.  A kiss and smile from the one you love is a powerful thing.

If you know my wife, then you know the power of her smile. If you have spoken with my wife then you know she can make a friend out of the most hardened of personalities, and if you have ever been in a room with my wife it is instantly apparent where the light is emanating from.

Even though she has a wonderful room-mate whom she is very thankful for, it is killing me to think of her ever being or feeling alone..

UPDATE: Today she is just as sick, and with only one more dose of the dreaded Cytarabine to go, she will only get worse before getting a little chemotherapy break over the weekend. I dont know how she does it, I am pretty sure I would have screamed uncle! Then quit.

images-18