Tag: cancer

She shines…

theycallmebetty4 Comments

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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..

I think I may have just gone crazy?

theycallmebetty25 Comments

im back 2

They say the struggle is half the battle. The lord will present you with nothing you cannot handle. Anything worth having is worth fighting for. It is better to try and fail than to have never tried at all. To live a life without challenges is to have never lived. (Yes I was paraphrasing)

Personally I have always felt; to remain positive, even when not showing it outwardly is to shine light upon your darkest of moments. When I am down I always remember that and it helps me to realign my thought process. I am not sure who said it, if it’s a combination of a few philosophies or one day I just made it up. But it is my go too.

Today Monday 19th 2015. I am officially tired of everything. Nothing, not even my go too is working. I am sure this is a passing feeling as I have never been one to wallow in my own despair. But today I just can’t seem to get a grasp on things.

I am going to complain, something I hate, but please allow me this moment. I need to get it out, I always do better writing than talking so if you’ll forgive me this (deep breath) here goes.

I didn’t sleep last night-AGAIN! My head hurt so bad I wanted to scream and whenever I did fall asleep it was filled with horrible nightmares centered on my family and wife. My brain won’t shut off! It is going a hundred miles an hour, all the time! I lay there constantly wondering if I am doing a good enough job or if I am failing my children? If so how do I inspire them, motivate them, move them without becoming frustrated! Last night after a long weekend with two of my kids turning into complete shits, I lost it with one of them. I was two steps away from becoming my father which is a condition I fight with daily. I don’t want that for them, it just shows them the easy way out is to yell, become intimidating and that is not how I wish to raise them. I needed to walk away into the darkness of our ranch and in the same fashion as how I work a horse, ponder just what I AM DOING WRONG first before pointing the finger completely in their direction.

My life has been centered on this family and my job for 19 years. What many people don’t realize is when you are accepted into the fire service, the fire service becomes your family as well. So I carry a huge amount of guilt for being gone from work as long as I have as though I have let them down as well. Some mornings I will stop by after dropping off kids just to sit and have a cup of coffee with the crew. It is not that I have nothing to do, just the opposite it puts me hours behind an already crazy ass schedule, but it allows me one whole minute of normalcy with my other family. Even if nothing is said at all. I am very grateful for the time off allowed thanks to my second family, but I do miss them.

What am I going to do if Jacy can never work again? I know that sounds selfish as hell but hear me out! Since we moved here I have worked very hard to build this place, to not owe anyone anything, putting every spare penny into new barns, doing the work myself, not taking a single loan but waiting patiently and in some cases building things with scraps and spares from other peoples lost projects. It is why we both drive 200,000 mile paid for cars, have a 15 year old horse trailer, still live with broken flooring in the house, a 30 year old kitchen and a hole in the ceiling. We have always lived on a thin line, trying to provide our children with a life most never dream of living. The life she always wanted for her children, the life I lived to some extent as a child. We knew it was going to be a struggle but took the challenge head on and a challenge it has been. Pay cuts, overtime loss, and raising costs of living, the very same struggles many of you face on daily basis! We are not special or any different than anyone else! Since Leukemia has taken over our lives my whole process has been reorganizing, selling things we don’t need, working for any extras needed around the ranch and slimming us down to a livable amount. I have put away every spare penny possible to cover her being out for an extended period of time. But what if? Do I have what it takes to keep reinventing ourselves? I always feel like I am never going to measure up. As though I am missing that one thing that others have to make themselves successful financially. We are making it without her income, but what if? I just can’t seem to shake the “what if’s” no matter how hard I try!!!! Is that normal? Am I just overreacting, should I just trust it will all be ok, and if so I just wish God would show me the way! Maybe he already has and I just can’t see it through a clouded mind that won’t shut off! I swear it’s as though my brains on crack! I really don’t care if my wife ever works again, I just want her to come home! To have a home to come home too! I just want to take care of her and see her with her children! To see her laughing and smiling surrounded by the animals she loves! I don’t care about me, my point was, hell I don’t even know what my point was anymore. Now that I have written it all out it seems arrogant, selfish and pitiful.

Speaking of her coming home. That proposed moment just keeps getting farther away! Every time she gets a possible date something else happens! I don’t know how she does it! She keeps a smile on her face and says; well what ya gonna do? She is right of course and we usually have a good laugh, but my nerves are raw. I am scared for everything she is going through, scared every time I walk through the doors, scared at every turn there is going to be more bad news, scared our lives without her for long periods of time will continue to be the norm, scared she will one day not smile anymore and feel as though there is nothing more she can do. Listen the prognosis is still good. There will be an outpatient date for her, but the hill just feels as though it is getting larger and harder to climb when it comes to her having any resemblance of a normal life. I know the retort is instantly; well at least she will have a life! But this is my one moment of bitching so let me have it! I want her home, I want her to never have to worry about her health ever again! I just desperately miss our life!

God! I just re-read this and it sounds self-centered and contrite all in one! Shit am I going crazy?

Today Jacy is going into the O.R. for a procedure to hopefully find and resolve her bleeding bladder issue. I am praying for the simplest of outcomes. The other options for controlling this issue are not what we want for our girl. Please pray for her today, that she gets the right answers, that everything goes smoothly, that she keeps a smile on her face and soon we hear she is smiling all the way home.

Thank you all for letting me vent. Tell me I am crazy, tell me I am ok, just tell me something for today I awoke feeling as though I was going to explode! I erased nothing in this rant, changed nothing even though I hate most of what I wrote, but I needed to write it and since I am unable to speak about it out loud, you have all just become my councilors. I am sorry for that, but good job on obtaining your degree.

12 Angry Men…

theycallmebetty3 Comments

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The summons stared me in the face like an angry, arms crossed child. Neither of us wanting to give in to the others wants and needs yet both knowing there was only going to be one winner. A summons for jury duty, reissued as a continuance had already been granted. Myself not really wanting to be there, instead only thinking of the re-arrangements to our already taxed schedule. But as 0630 rolled around and we stared at each other with contempt, I blinked first, the jury summons won thus off to The Halls of Justice we went. (Cant type it without hearing the justice league cartoon)

Standing in line with other prospective jurors it was blatantly obvious no one wanted to be positioned in front of this building. I meandered slowly towards the door, belt in one hand, anything metal in the other, doing my best to not look annoyed as I proceeded through a metal detector. Once inside I quickly found a seat and the waiting began.

Several times instructions were read. Our summons clearly states all blanks on the reverse side should be completed prior to arrival on your assigned date. Apparently only 10% of us understood the instructions or even bothered to read this nasty little note. Finally a representative arrived and began reading from a list of names. There were to be three groups. One group assigned to courtroom 207, the other assigned to 208 and the third group was to stand by as alternates. No one wants to be in the alternate group as there is no timetable assigned. Either you are released right away or kept all day long as jury selection trudges forward.

So a little known secret. I love jury duty! Seriously, I think jury duty rocks! I have been on a jury and was picked to be the foreman! It took four days total and was very interesting. You really have no solid foundation for how our justice system works until you have been on a jury! But under my current circumstances it was not appealing at all. But I was there and would perform my civic duty regardless.

As a young gal stood at a podium reading names for group one and two, I secretly wished they’d call my name. I know I needed to be at Stanford, and as confusing as it is, I also knew I wanted to be on a jury, it’s kind of like the two biggest kids on the playground picking teams! You pray you are not one of the last two kids left with two captain’s arguing over which one of you sucks less! So I sat, listening to an alphabetic order, praying F would be for me! Well I ended up in group three. Bummer, the dreaded unknown!

Then something happened, they readjusted their numbers and just like that! I was headed to courtroom 208! Five minutes later they excused all alternate jurors! DAMNIT!!! I could not win! So I resigned myself to a possibility of four or five day’s jury duty. Sitting in the courtroom trying my hardest to listen to our judge I couldn’t focus! I kept thinking about my wife, laying there wondering when I would arrive. Then it was the kids, how will I get them where they need to be all week-long? But the final straw was when I realized I had no idea what the judge was saying! I had been sitting in the courtroom for 45 minutes and the only thing I remembered was raising my right hand to be sworn in! Also I had become overly stressed out over my phone being completely shut down! One of the rules of the courtroom! What if Jacy needed to reach me, or her mom or dad? There was no way I was going to be able to survive this and still care about the defendant’s right to a fair trial!

The judge asked at 1145 for all jurors who felt they had a valid hardship in conjunction with fulfilling their obligation to serve to please form a line outside. She also asked anyone who felt they would have an issue with serving to please raise their hand. 30 people raised hands, all grumbling as they did so. I did not. No way was I going to be a slacker! Good men and women have died for our freedoms and with those freedoms come the responsibility to fulfill our obligations. We Americans have one of the best judicial systems in the world. It may be flawed but it beats the hell out of being thrown in jail to rot with no rights at all! So this guy wasn’t going to be one of those guys! That’s right! Damn proud to be an American!!

11:45- The line is long. I am third from last.

Oh shut up! I hear y’all now grumbling about all that patriotic shit I just spewed! The long and the short of it? There was no way I was even close to being able to pay attention. As conflicting as it was for once it was about me, my needs, and the needs of my family. I was sorry for the defendant, but I didn’t put him there and my wife needed me! End of story!

Walking up to the podium, lump in my throat, I really did feel guilty. The judge was really awesome, from the beginning she was funny, with great dialogue! She reminded me of Judge Harry from the TV sitcom Night court!

I placed both hands on the podium looked up at her as she said hello. I shook my head (I think she could tell I was bothered by what I was about to do) and said: I feel guilty standing here right now.

Judge: I have that effect on people!

Everyone chuckled

Judge: What is your name for the record?

Me: James Franceschi

Judge: Go ahead Mr. Franceschi

Me: I didn’t raise my hand earlier and for that I am sorry but you see my wife, well my wife had a bone marrow transplant in July. This date today was my rescheduled summons, a date I picked because she was supposed to be home by now. She is not. She has had every ailment possible and continues to struggle through setbacks at Stanford hospital. Therefor I don’t believe I would be a good pick for this jury as my mind is obviously elsewhere.

Judge: family is the most important thing and should come first.

Me: Thank you, and please understand I am who you would want on a jury. Every time I am called I look forward to being picked and the last time I was here I was not only picked but the other jurors picked me to be the jury foreman as well! I had an amazing experience serving as a juror.

Judge: Thank you for your service Mr. Franceschi and let’s just say this ones on me! Your service here is complete and thank you again. The court wishes the best to you and your wife.

Me: Thank you judge

As I walked from the podium I heard the judge say thank you again and that she wished others could have heard my testimony. Slightly embarrassed, I quietly said thank you again and after a moment with the bailiff I was on my way. I hope one day I am called again and it is in her courtroom so I can be a part of her machine. I am sure anyone who serves under this judge comes away with a smile.

Two hours later I was with my wife. When I am with her my blood pressure drops, my head stops hurting a little, my heart beats a little slower, my smile grows a little larger.

I busted Jacy out of her room for a stroll to the fountain. We found a shaded seat as she cannot be in the sun and even with a mask on her face I saw her smile through her eyes. The warm breeze upon her skin, the sound of water crashing down and a duck or two chatting away in the distance. It was amazing just being by her side, knowing it is, was and always will be where I am supposed to be.

After we had all the sun and fun we could stand, I rolled her back inside where she proceeded to walk not one, but two laps around the quad. This girl wants to go home and bad! Of course this left her exhausted and within a few minutes she was fast asleep holding my hand.

Two hours later the day was gone and I needed to say goodbye. I hate saying goodbye. I still hate walking out the door. But I do so knowing she is being taken care of by some of the best human beings I have had the privilege to meet. I love her and so do they. It shows every time I arrive and am greeted with a smile.

This week she is starting another experimental drug to help control her bleeding bladder. Please continue to pray for rapid healing as prolonged exposure to this drug can leave irreversible damage. But it is our only rational option. I say this because the other two options, the way I understand them would leave her either on dialysis for the rest of her life or incontinent.

A day that started out with possibly twelve angry men ended with one happy wife and one humbled husband who is always glad to have another opportunity to simply hold my wife’s hand..

jacys hand

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

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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….

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Up the Hill, Down the Hill…….

theycallmebetty6 Comments

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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

Oh? One of those calls….

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Why must you ring? Why?

One of “those” calls, the phone call we all dread.

We all know the story, have heard it recounted a million times whether through a friend or family, on television or in the movies. This haunting recollection is always recounted like an old wives tale and for some strange reason it chills even more so simply through its timing. Midnight to 5am.

The phone rings, its 4am. Nothing good comes from a phone call at 4am. No one I know lives on the other side of this big round world just waiting to chat my night away, no one I know has been counting down the minutes to converse with me during what would be considered to any other normal human being, bedtime? No one. Not one, single, solitary person.

So that means when the phone rings at 4am it is without a doubt bad news, it always means at 4am that it is bad news. Right? Publishers Clearing house is not calling to inform me I just won 10 million dollars at 4am! Although they could, seriously PCH call anytime, PLEASE!!!!!

It rings, I don’t hear it. Sound asleep, weary from a long emotionally charged week my body is in deep REM sleep. Somewhere in my dream there is an apparition yelling at me to arise, screaming to wake up, something is not right! I wearily crack an eye to a very dark bedroom only to recognize the sound of a voicemail populating my electronic gadget of life.

Heart rate doubles instantly like an electric shock, as though the bell has just gone off at the fire station and I hear the words “Structure Fire”. Bam! I am awake! Searching fumbling for the phone, fear instantly grips me, thoughts, horrible thoughts of what may be; enter my brain! They keep coming as my fingers can’t quite grasp this stupid phone! Nothing is working! Squinting hard, no recognition is working and I can’t find my damn glasses to see since my fear induced jolt knocked them off the nightstand. Like Ralphy from a Christmas story I carefully search the floor praying I don’t take a misstep thus hearing the cracking of a shattering lens.

I have them! I can see, hitting voicemail a somber, I am guessing through dialect Asian gentlemen calmly explains Jacy has been moved to ICU. Her O2 saturation is poor, her breathing is labored, her red cells are down and she is in need of one on one care. If I have any questions to call.

Thank God! She is still ok!

I lay down for a moment to stare at the ceiling.

Once the emotions are out of my system, my heart rate has returned to normal and I’m done being scared, a thought crosses my mind. Why? Why does a late night call always bring the worst instantaneously from our subconscious? I know history, tales of woe and an assumed perception of the worst has everything to do with it. But I just wish there was a way I could shake that thought process from my mind. Anywhoo, this is how my week was to begin, with a single, heightened, middle of the early morning phone call.

After arriving to the hospital, doctors announce she had contracted a form of pneumonia giving her grief which explained why her breathing had been so labored. Her doctors said the GVHD was still responding well to the experimental drug Jakafi and their hopes remained positive as far as continuing to slowly wean her from all steroids which would help with her continued muscle deterioration. She has recently developed diabetes which is being treated accordingly and is also one piece of the picture in regards to her continued loss of vision. On Wednesday she participated in a bronchoscopy which did not make our girl happy at all, having a camera shoved down your throat when you have no strength to fight left her feeling a bit more helpless. By Thursday for some reason she had reverted completely and was back to feeling a failure in her recovery. She needed all our love and care to snap her back into her super woman fighting spirit!

I contracted some form of a cold and have not been able to see her which has been difficult to say the least. It is hard when the woman you love wants you with her more than anything and there is nothing you can do but stay on top of your medications and pray this stupid cold goes away quickly.

She wants to come home, it is all she thinks about! She wants to see her children, to hold them to watch them, to simply sit down and do homework, participate in their lives. On days she feels like quitting all it takes is reminding her what’s waiting for her at home and we can usually snap her out of a funk.

As of today Jacy is doing much better. This incident happened on Tuesday morning and although there have been a few bumps in the road for the most part she has held her own. The tests came back from the bronchoscopy and she has HVV6 a herpes virus we all carry to some extent, it masks itself in a few ways including pneumonia. Good news is she was already being treated with the appropriate medications so a minor adjustment and we shall see in a week. Jacy can no longer walk as her muscles have finally weakened. She still has limited use of her eyes which has been the hardest on her. She works very hard at staying mentally strong which after 67 days can be a bit daunting for a person who is used to doing everything for herself. Thanks to the help of her family she can sit in a chair for about 45 minutes without assistance, she is participating in physical therapy daily which includes the use of bands giving her muscles some resistance. She recently was placed on a special air mattress to help with her bed sores. She is seriously one tough cookie and my hero.

Our family thanks everyone who continues to pray, help, and care. She is the light of our lives, the toughest woman I know and she will come home. It just may be a while..

Hopefully I don’t get another one of “those” calls…

12:11 Sunday: Just in as I place the final touches on this latest edition!! HVV6 responding well, her lungs are clearing up! She is off oxygen and finally saturating in the high 90’s on her own. She has also been moved from liquids restrictions and will be able to consume fluids which means solid foods are not far behind!

Keep those prayers coming, she needs prayers of strength to help her mentally feel like she is improving, keeping her spirits high!

What do I say?

theycallmebetty7 Comments

What do I say?

The woman I love lies in a room far away, alone. She says everything will be ok, she says she will win this fight, she says she has faith, she says…… She says she misses me.

I have often wondered; what is love? The movies would have you believe it’s a look, a moment, an encounter filled with music and rainbows, strangers meeting on a balcony with electricity shooting through their veins as they saunter off into storybook bliss. In reality love comes in all forms, at any moment. I believe love isn’t always apparent, it sneaks up on you when you least expect it or comes from a direction never envisioned. Sometimes love is seen through Gods eyes not yours. You learn this when asked to follow him, trust him like no other, no matter what anyone says, no matter who passes judgement because you know what you feel is love.

Love means seeing things through another’s eyes, not your own. Putting aside personal aspirations or needs to put someone else on a pedestal, even if just for a moment. Sometimes I don’t want to put anything aside or see through another’s eyes and I fight with my own selfishness, but love means knowing without a doubt that anger will never betray your feelings and forgiveness comes easy because you know love.

Love is having a sense of humor no matter the situation. Life is filled with funny moments experienced through both happiness and tragedy. Although there will be some who don’t envision any humor you portray, a moment remains funny none the less and it is love allowing temperance for another’s inability to embrace your vision of humor.

Love comes from holding someone’s hand. Happy, sad, or simply a comforting moment shared between two people for any number of reasons. Old, young, sick or healthy, to hold someone’s hand is a gift given that I think we take for granted. Human contact in it’s most basic form yields love.

Love means blindness. In a society that consumes hate like a Thanksgiving dinner and breeds intolerance for self centered glorification, to love regardless is a powerful statement. We are all born the same, with love in our hearts it is how we are raised that enables societies need. Love, true indomitable love conquers all roadblocks placed in our paths, thus destroying any hate others need to survive.

Jacy was brought to me through God, she taught me to believe in others again. I am sure I have said this before, but she took an broken angry man by the hand, against what all others wanted and showed me how to trust in myself and believe in love. She loves everyone and shows that love every day. She can be angry as a corned mountain lion while in the same breath forgiving as a priest. She challenges me and shows me how to be a better man every day.

I know what love is; it is my wife.

Our house is not the same. The sounds of children give it life, there is a warmth that comes from watching four of your offspring actually working together, laughing, and acting as though they enjoy each other’s company. Even with their mother absent, they are trying hard to keep some semblance of normalcy. They miss her greatly, but know I need their help so they have put aside many of their trivial arguments, moments of discontent and are working hard to keep this machine that is our life running smoothly. But even with all their efforts our house is not the same.

My bed is empty. I am the type of guy who would drive 36 hours straight, just to sleep next to my wife as opposed to alone in a hotel room somewhere. Pillows are stacked high, placed appropriately to simulate her missing silhouette. Where some may take this opportunity to stretch out, explore the generally off-limits other side of the bed I look at it as a sacred place. A place where only she sleeps, her heavy breathing absent, a constant rustle from restless leg syndrome under the covers, the glow from her ipad no longer lighting up the room at 1am, even her scent has begun to fade.

I cannot sleep.. The day keeps me busy enough. I have always believed to be a good husband you should do as much as you can as often as you can to assist your wife. I know it drives her crazy when she vents about something and I immediately try fixing the problem! It is just the way I am hardwired, I am a fixer by nature, it cannot be helped! There is nothing to fix here, I have only my problems, my harried schedule, my heartburn and stress and there is nothing I can do about it. So I just lay here looking at the ceiling; wondering if she is sad and feeling alone. I can’t sleep.

My heart aches for this time lost. I don’t understand why we are doing this? What on earth led us to this point? I just want her to be here at home! To be with us all the time! Her laughter, her smile, her goofy ass ways! I long for the moments when her goofiness drove me crazy!!! She is missing out on her children, her animals, her marriage and I want desperately to find someone to blame!! But who or what do I blame? There is no one, nothing, it is what it fucking is and that is bullshit! There is no getting back this time lost from her life, like a patient awakening from a coma to wonder what is, what was; my heart aches.

What do I say to people who ask how she is? The truth is too painful and to lie, well a lie is just a dishonorable thing to promote. I don’t mind keeping everyone abreast of Jacy’s condition, it does help others to better understand the severity of her situation along with the suffering of others traveling down this very same path. But what do I say to those whose hopes read far too much into my accounts. We all have hopes, but it’s hard to keep pacifying those with no intentions on hearing the truth. Do I keep telling it like it is or do I falsify my facts for a softer, gentler outcome during conversation? Some days it can become so intense a small bead of sweat rolls down my back and while looking for a legitimate out my eyes scan the room for the woman who would always save me in situations like this, but wait that woman is who we are talking about. She is not coming, she lays undisturbed in a hospital room 100 miles away. So what do I say..

Her kiss. When I married my wife it was her kiss which solidified our union. Your wife may have a nice kiss, but my wife, well… Today there is no kiss, tonight none as well, I long for her kiss, as it settles me when I am angry or tense. The only kiss I get now is through a mask, it is not the same and is always followed with how much she needs me. I need her too, yet it’s my heart that needs one of her kisses.

Some days I feel like I am failing.. Trying to be everything to everybody takes a toll. I have plenty of help and a routine that is working well. A community graciously at my beck and call, I am blessed. The kids are fine, the animals are doing well and the ranch is running fairly smooth, but I can’t help but feel like I am failing. My heart wants to be next to her every minute of every day. She is small and frail, no longer the strong woman who could run 24 miles then teach two spin classes in a day. She can no longer see and can barely walk to the bathroom which has left her with a fall protection device upon her bed. She longs for the ability to just stand up without running out of air, then needing to sit down just as fast as she stood. I am not there to help her, to make her walk, my schedule leaves me going every three days and it is not enough! I am her husband, her best friend, I promised to care for her in sickness and in health and yet I am not there! She should not have to cry alone, or act surprised when she sees me because it’s been to long between visits! My world is running so fast while her life is locked down, frozen, like the hour hand of a clock running in slow motion! I know this is what she wants, she tells me every few days is fine, she needs a happy routine for her children. There is no reason both of us should be absent and she is right! Sometimes I hate when she is right for I only want to be selfish and only think of her! Yet to see her sad and missing me, well, some days I feel like a failure.

So what do I say?……

Can someone please tell me what I am supposed to say? Can you? Place yourself in these shoes, stand tall because it is how you were raised to handle adversity, look into your children’s eyes daily, and hope you don’t give away too much while praying for an answer to come soon. I have become weary of sadness, tired of worry, tired of being scared, tired of being without my wife, my best friend and partner in crime. I have grown tired of being me. Wondering constantly while holding her as she worries about her life, her children, her home, her friends, the ones she loves, as she worries about my wellbeing  if she can remain strong enough. I know she can’t see me but I hold her and look into her eyes anyways because I know she can envision the look of love coming from my face ..

What do I say?………

The answer? There is nothing to say. I will keep moving forward, making life appear seamless for my family even though it is far from so. She needs to know all is well, that I am well, and her sole purpose in life is to heal then come home. She needs to know the fight is not me, the fight remains against her disease. My job as her husband, as the man who loves her more than she will ever know is to continue on, support her anyway I can while quietly, carefully caring for the life we have built together, forever.

What do I say?

I say, I love you….

I wrote this a few days ago. I have held onto to it, not wanting to post it, fueling a panic button that I may just be losing it a bit. In reality after reading it over and over again, it is the way I feel. It is the way I believe many would feel about their significant other in the same situation. Why? Because I do believe in love.

This morning  (August 19) Jacy can finally see a little better. The latest from the doctor in regards to the experimental drug is her body has accepted it and she is currently (his words) on a slight “uptick” from the median line of survival we are all hanging onto. This is great news! Although things can change for any reason at any time, the fighter that is my wife is coming through! This weekend they wean her off more of the steroids and up her drug a tad bit more.

So I kept it another couple of days. As of August 22, she had a little slide. The pain pump is back in place, she has severe edema so she is receiving Lasix again hoping to shed the fluid. A catheter has also been re-installed as her bladder refuses to quit bleeding. The plan remained the same as steroids continue to be weaned and the experimental program continues.

So please keep her in your prayers. I am fine, that is why I write. Writing allows me a freedom and ability to say what I feel, share it with others who may feel the same way, helping to cleanse my soul and recharge my emotions to handle the next moment, day or week.

Thank you for that….   Betty.

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The 80’s and fighting Leukemia? Huh?

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Lately I have been on a bit of an 80’s music kick. You remember the eighties don’t you?

Mount St. Helens, Billy Idol, Princess Diana, Ronald Reagan, YUP’ies, the Challenger explosion, the Falkland war and we cannot forget Bill Gates becoming the richest man in the world in 1983.

Now I mentioned Billy Idol only for music, I loved his fighting angry style and sneering grin which always makes me think of him first! But let’s be real shall we? In reality it was a decade filled with some of the most adventurous artists ever in my humble opinion. Angry, screaming, fighting against the machine music! (anyone remember the sex pistols?) In that vein there was punk rock, hard rock, and heavy metal! There was also new wave, pop, and let’s face it country music was still COUNTRY! Not this rap, pop, cross over crap they are passing off today. Just a reminder of a phrase recently coined by yours truly. Country + Rap= CRAP!

“Country + Rap= CRAP is a trademarked statement and not to be used without the express permission of They Call Me Betty inc. along with any and all subsidiaries associated with They Call Me Betty inc..”

While traveling down memory lane with some of my favorite 80’s artists a revelation; the 80’s may in fact be the new 50’s! I mean even today the 50’s are alive and strong musically, there are oldies parties and people still love hotrods from that era! This of course set me to wondering why no one really celebrates the 60’s or 70’ the way the 50’s and 80’s are celebrated on a regular basis.

The 60’s were cool, free love, hippies, rock and roll expanding from suits and ties in the beginning to long hair and freaky clothes as the decade came to an end! Then the 70’s arrived and we had Vietnam, rock music was trippy with long hair, lots of dope and a strange sound, other music forms revolved around love, lots and lots of love. Near the end though the 70’s got weird which I blame on a desperate struggling economy. This may be why we got happy Disco music (along with copious amounts of cocaine) blaring in our ears forcing us to dance the night away in a sweaty barrage of bodies, polyester and open front shirts!

So why don’t those era’s receive the same loving reflection? Maybe they do and because I lived the eighties decade I only notice its relevance in society today? Either way.

As I was saying, I have been listening to eighties music a lot lately. Needing to find my happy place as all of this craziness swirls around me. Sometimes when I am watching Jacy sleep and it is so quiet inside her room the only noises to be heard are that of tiny IV pumps turning and a favorite Van Morrison tune cranked loudly inside my brain. It is like watching a sad music video behind my eyes where you flashback and pretend two of you are walking on a secluded beach, or laughing as rain pours over the both of you only to fast forward through the twisting of a scarf in the wind. There you are sitting alone on the very same beach staring off into the distance as the screen fades to black. (Totally sounds like and 80’s video huh?)

Spending time next to my wife is my favorite activity as of late; she cannot see me most of the time, but even when she sleeps she knows I am there. She is slowly showing signs of improvement as her sight returns, then fades away only to return in one eye the very next day. Her face has cleared up with baby fresh skin left behind from the drastic peeling and sloughing the week before. Her body remains covered in rashes and blisters which is hard to see as you know it hurts all over. Her once fit stealthy frame has been reduced to skin and bones. Her body is eating itself alive right now, our hopes remain for a complete turnaround soon. I hug her when she stands and nothing is there, I close my eyes and kiss her which feels the same, warm, familiar, wonderful. I can only kiss her through a mask but it doesn’t matter for love knows no barriers.

I ran into her doc in the hallway yesterday, she was having a particularly hard day as a multitude of drugs had run her down leaving her barely able to stay awake. Doc says status quo, which in this case is a very good thing. We won’t have true numbers on what this experimental drug is doing or not doing until late next week. Good news is she is holding her own and they began slowly weaning her off steroids which will allow this drug to work a little harder. Her breathing sounds a little better (not as much wheezing and phlegm) and her voice a bit clearer. Over all Jacy has been fighting the good fight and that is all any of us can ask for from this tough Cuban chick. righttttt????

Today’s writing was a bit of a ramble, but I suppose if I am going to write about this journey, it can’t all be a structured garden filled with sunshine and roses. My brain is fried, I am scared for my friend, but we stay strong through faith. As she reminds me on a regular basis; this sucks, I feel like shit, I couldn’t do this without you, but I have faith and I love you. I will beat this, we will be together again with our children at home.

Who could ask for more?

Think I’ll put on the earphones and crank up a little Idol?

idol

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