Category: Bone Marrow Transplant

When angels cry

theycallmebetty7 Comments

 

angel 2

Today I felt a sound;  piercing silence with destitute angst, grasping upon fibers of resolution with no sustenance for carrying such weight. Fear, exhaustion, sadness, weariness, exasperation; the last few exhales of a frail and emotionally barren patient who feels as though one more night without resolution may become one night too many.

I felt it! I didn’t hear this sound, although my hearing is just fine as human beings we carefully and most often selectively choose what we hear and when. Yet every now and again it is more.

While on the beach we hear waves yet I feel deep in my chest their mighty power swell, withdraw and swell again crashing onto the pummeled earth we know as sand.

Riding my horse, any horse; I can hear the animal breathing hard leading me to know she is working, but what I feel is so much more. Tightening, relaxing, stride reaching or falling short, flex, give, kindness, frustration and freedom. I carefully feel deep inside what I hear leaving me satisfied or yearning for more.

My child hugs me and says I love you daddy, but what I feel inside is warmth, love, caring need, want, respect and knowledge that this being was not only the very best decision made in my life but, I will always love them exactly the same way long after I am gone.

So when my wife calls me this morning quietly whimpering, leaving me struggling to understand what she is trying to say. I feel that.  Through calm patience allowing her to gather enough breath only to break apart, crumbling into tears because its been a long night with no sleep, excruciating pain, another fever, and a new inability to adequately exchange oxygen within her lungs. I let her cry.

I don’t hear her cry, I feel it.

Phrases like: I am done, this is all I can take, I just want to go home, spew forward with no resolution.  I can’t take the pain any longer, I feel broken, I’m never getting outta here, I am scared, so very scared!  All spew unabated from her raspy, quivering vocal chords.

I feel it deeper.

My throat is tight, yet I can’t let her know, my stomach hurts so quietly away from the receiver I take calculated precise breaths to not let her know my heart is breaking.

Because I no longer hear her words but feel her pain.

Today they are doing a procedure to extract a portion of her lung for testing.  She does not have adequate oxygen flowing through her system and they are concerned as to why.  Her white cells are there, they are multiplying, they are accepting their new home. She has a fever that will not go away, vomiting has not ceased, fluid retention stays the same and with each and everyday she feels her road to normalcy slipping away.

Two days ago she felt good, we all  felt positive, but for some reason two steps forward continue to multiply into three steps back. Like climbing a mud slicked hillside or traversing through a severe rain storm. This journey was never promised to be easy, it was explained to us in very plain English it may be a rough road.  Since we have been at Stanford I have personally witnessed people walk out, ready for the next phase.

I know there is hope, I feel it without so much as a word spoken.

Yet it is not me suffering through each day, I am not staring at the same four walls, no big blue curtain surrounds me or leaves minimal privacy as my body aches to urinate every five minutes. My life is not surrounded by nurses or inundated with endless needle sticks, buzzing, chirping squealing machines. At no time do I feel like screaming from boredom just to hear something other than the television.  When I arise in the morning my legs work, I stand just fine, without assistance. There is no button to push asking for help or more IV pain meds, no pills to swallow every four hours, no reciting my name, birthday and address for security purposes every time a medication is given. I don’t need strangers helping me to shower, cleaning up after me or wiping my backside when things go sideways.  Every morning a group of attending’s with their mentor does not surround my half-naked body staring and talking as though I am not there unless a learning moment needs explanation. Oh they are nice enough, friendly smiles and all yet it is not in my wheel house.

All of this happens everyday for my wife, my feelings are positive, I know it is all going to turn out ok, I feel it.

I hear her desperation, I hear her cries for help, I hear her pains, wants and wishes.

But when my wife calls saying she’s done; I cannot hear that, I can only close my eyes and feel an angels pain.

How “we” are doing.

theycallmebetty3 Comments

Unknown-2This arduous journey we are on is filled with inevitable highs and lows. People are always asking how “we” are doing and although for the most part I am fine; I cannot hide my feelings of attrition while aimlessly wondering through each and every day. Work is merely a blessed escape, a place to hide from reality as we move hour by hour towards resolve. Home leaves me running around trying to appease everyone while getting absolutely nothing done in the process. The carnage left behind I fear to be my children. Although showing no signs of weakness along with praising my personal efforts whenever we check in at night, I often ponder what their reflection of this moment will become years from now. Will their recollections be filled with bravery, honesty, and fondness for a valiant effort put forth by many loving, caring friends and family? A summer filled with day trips, adventures and playtime accompanied by freedom from parental rule? Or will they only remember a summer where no mother or father were present a majority of the time? Night after night of no one to kiss them goodnight, tell them how very proud we were of any small accomplishment casually swept under the rug through absence? I wonder, my heart hurts, and panic grips my thoughts as I have no control over any situation they may find themselves. Or maybe I am just thinking too much?

My oldest is doing a great job, the kids are constantly singing the praises of super, duper big brother Cody; it does bring me some comfort in the man he has become. But day after day I smile, I hold strong, and act like nothing is happening for the only ability I hold to express any feelings resonates within the stroke of a key. It is probably nothing, my uncontrolled daydreams of disaster happening without me present, strung together from the woven fabric of a long storied career, centered on assisting others during disaster. For my spinning, crazy mind the boogie man hides around every corner waiting to spring into action. He prays on the weak and unattended, and although my oldest is an adult with more than adequate skills to handle any trouble that may arise, through my eyes he is ten years old with a squeaky voice asking for my help and I am not there.

I miss my wife, I miss my friend, and I even miss her being terse with me for something stupid that has sprung callously from my mouth. (which if you know me is frequent)  I miss her kiss. Leukemia sucks. It has been 4 weeks since I have been allowed to kiss my wife. (Definitely been taking that for granted!) 4 weeks! Now don’t get jealous but truth be told, one kiss from my wife can erase a month’s worth of fret, anger or sorrow. I know, you’re jealous anyways, you just couldn’t help yourself huh? Its ok, but she is mine, so get your own!

That is how I am doing. That is what’s spinning around in my brain on a minute by minute basis.

The good news is how Jacy is doing? Jacy is slowly getting better!! Her white cell count is stabilizing, the constant fevers of 101-104 are now holding steady 99-101 (yes that’s a good thing)! She is still very uncomfortable from added fluids in her cells. This comes from bag after bag of fluids added to help with a bleeding bladder! So there is roughly 20-30 pounds of extra water weight on her at any given time. This added fluid is extremely uncomfortable and at times painful. Jacy is still having problems with severe nerve pain to the point a physical therapy team has begun working with her on a daily basis. Being the stubborn Cuban woman she is, nothing is keeping her from trying to walk the entire circumference of the quad. Chairs strategically placed around its outer perimeter have assisted her with this feat! She called me yesterday to announce she made her first full lap! It hurt like hell, she struggled a bit, but she made it and felt like she finished a marathon! Her lips and throat have been saturated with sores and as of yesterday most of her bottom lips inner skin had sloughed away, leaving raw exposed nerves. This is all part of recovery as the white cells are learning what is foreign, foe or friend within its new host.

Word on the street is if she loses the temperature spikes, the bladder stops bleeding and she is able to walk a little more consistently without so much pain, they will turn her loose to outpatient care. Outpatient care requires living within 30 minutes of Stanford in case of a recovery reversal such as high fever, difficulty breathing, an infection of any kind or onset of GVHD (Graft Versus Host Disease). This of course means she moves into her dad’s apartment close to Stanford where her family will assist with her recovery. It also means once school is in session our family will make the journey every weekend to spend much needed time with her.

When I spoke with her today her spirits were high! She feels as though she is finally turning the corner and is looking forward to making it out of the hospital signifying the next step in recovery.

Thank you all for the continued prayers, support and love. The Franceschi clan is very grateful for each and every one of you!

May God bless you all, as together we watch my awesome wife Kick Cancers Ass one more time!

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Life? Leukemia? You just dont have it all figured out…

theycallmebetty6 Comments

stay positiive

Life has a funny way of throwing things into your face. You may think you know what’s going on when in reality you are just as clueless as the moment you awoke this morning, groggy eyed, wondering if everything flailing inside your brain was a dream or a continued reality you just cannot grasp.

Last week I dreaded going camping, it felt as though I was trespassing on the sacred vows of marriage. The thought of leaving my wife behind at Stanford where she has been for three weeks to camp with friends, drink beer, fish and play a variety of water sports with our children; well It just didn’t seem right.

Unbeknownst to me early on the morning of our departure my wife after having a particularly hard night filled with rigors, 104 temp, vomiting, and excessive fluid buildup leading to a case of difficulty breathing had in fact only one thing on her mind. It had nothing to do with what was happening to her, on the contrary it had everything to do with me. That morning as we loaded up to leave, lump in my throat, with nervousness screaming aloud in an already crowded room known as my subconscious, my wife asked her doctor if she was going to die.

Jacy didn’t want to know if she was going to die for her own welfare, although she was terrified with so much pain and discomfort. No my wife asked by simply stating; I just told my husband to go camping with our children, to go meet friends and have a good time. He doesn’t want to, he feels the need to be here, with me. Doc am I going to die? Should he go? Her answer; I cannot tell you whether or not you are going to die, but what I can tell you is even though this is hard right now, you have all the positive signs of making it through; we can manage your symptoms you just need to stay focused. If I were to tell you anything it would be to let your husband know it’s ok to take your children camping. We are here and you are receiving the very best care. And with that my wife never said a word.

The weekend was perfect, every child did exactly what they wanted to do, be it tubing, wake boarding, or just plain old fishing with dad it was a sunny break after a long bleak storm. Every moment, around every corner of the campground I looked for my wife, I knew she wasn’t there, but it’s what occupied my mind. I answered all the curious questions and felt at home as we were surrounded by some of the most caring wonderful families. It was definitely a delight.

Saturday night I was feeling my emotions associated with this weekend were all figured out. You know as in; this was Jacys way of allowing me the ability to tell myself it was ok to have fun without her, to not worry or feel stressed if even for a short period of time. That my mind and body needed to quit worrying for a minute and just regroup so upon returning my abilities to remain strong for her and the kids would be renewed!

Then I met a Gary (name changed for privacy)

Standing by the band (yes this camping trip had a band, and they were good, really good), beer in hand, feeling pretty confident with my all-knowing sense of entitlement, Gary walked up and introduced himself.

You see Gary has a wife, Gary’s wife is a two time Leukemia survivor which included two Bone Marrow Transplants. Now I had a few, so I am not positive, but my recollection was the first round was actual bone marrow and her second round stem cells exactly like my wife. In great detail Gary discussed each and every day, the highs and the lower than lows. Side effects, sicknesses, water weight, seizures, the BMT wing at Stanford, we talked about it all like warriors likened to each other through battle. He talked with sincerity about a wife who was ten years free and clear when she didn’t feel right and she knew. About whether or not to go through with another BMT. About making the right decisions and struggling together through it all. Gary was a kind gentle man who spoke from the heart.

After we finished talking my head was swimming, how they mirrored many of the same issues my wife currently faced, how he struggled the way I am struggling now and reassured me with patience it would be ok. I left a little early, went and laid down, overwhelmed by it all.

The next day we hung around camp, fished off the dock and hung out with our friends. The boys/girls went tubing while Parker and I fished. In the middle of the day Gary was standing near me when a nice lady walked up to which Gary stated with a smile; there he is, you wanted to meet him? She looked confused for a second, then putting it all together stuck her hand out to shake mine and introduced herself as Sara (Name also changed for privacy), Gary’s wife.

Sara and I had a very nice talk about Bone Marrow Transplants and it was during this moment that a realization struck me right over the head. We weren’t only supposed to be here for the relaxation it afforded our children, the ability to unwind some of our stresses or allow my wife to feel as though she wasn’t impeding our children from enjoying their summer.

No, once again life had shown me how arrogant it was for me to think for a second that I had it all figured out.

You see God always has other plans.

We were there so I could meet this couple, hear their story and understand that it would be alright. It was going to be hard, there was no doubt to that fact. But in the end, it was going to be alright. We would survive this, she will survive this disease, this transplant. There would be plenty of dark days on the road to success, but to fully understand success comes at a price and through hard work, a life able to be lived was just over the horizon. This man’s wife was here, she survived twice to be with her husband and their children and now she was here helping me to survive as well.

When we left on Sunday, we all hugged and said our goodbyes, I didn’t get the chance to say goodbye to Gary and Sara, but they have been constantly in my thoughts ever since.

Don’t ever think you have life figured out for you would be wrong, God knows, and if you listen closely you just might hear what he has to say.

UPDATE: I wrote this Sunday night and something told me to wait. So I listened to that inner voice.

Monday was a hard day for me as I watched my wife suffering through almost thirty pounds of water gain, her face and lips swollen, her inability to speak because of lesions in her throat, almost in tears due to excruciating pain in her legs and knees with an inability to stand for more than a second without collapsing. There is or was nothing I could do, but hold her hand. She slept on and off, would hallucinate in the middle of a conversation with me, and constantly thrashed around uncomfortably with what looked to be an Alaskan pipeline of IV tubes going into her or drains coming out of her. But through it all she would smile, tell me she was happy I was there, and we would hold hands before she fell asleep again.

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Tuesday-Today; another long hard night with a myriad of problems, at one point she sounded destitute, unable to handle her state of being. A few hours later she called and said she was feeling better, we talked for a while about my meeting this couple and she agreed it was all in God’s hands. A few hours later she called again and could speak fairly clearly. She said; the day was just looking a little better and we talked about the kids. Then this evening she called one more time. Her blood results came back and white cells are forming! She is engrafting! It is the first major step towards recovery! The nurses were also referring to her having the ability to become outpatient within a week or two!!! It was all too much for me to comprehend when she told me and I am afraid I may not have come across as excited enough, but all I can say is thank you God, thank you everyone, keep the prayers coming she will need them to get through this next week and we will all pray her new immune system likes its new home and continues work hard for our girl.

All things happen for a reason, I am fairly certain my attitude would have continued in despair if not for a chance meeting during a camping trip that I was certain I wasn’t supposed to be on.

charlie brown

A Transplant update.

theycallmebetty10 Comments

Seven days ago the wonder of transplantation coursed through my brain resonating in my soul. Medicine working in ways we could never imagine 25 years ago! Modern medicine is ever evolving and with technology jumping by leaps and bounds in what feels like Nano seconds, medicine of today will become barbaric by tomorrows standards in no time at all.

Seven days has passed slowly for my wife, no wonderment for the miracles of medicine because she remains sick. Very sick..

Being an ever curious man I am constantly seeking new information about Leukemia and its effects, my brain absorbs every bit of information that surrounds me with an ability to understand what, where, when and how which comes from years in a profession demanding we evolve or be cast aside. There are others who don’t see or understand all that is happening to my wife right now and that’s ok, although I believe it to be partly my fault. Whether lost in translation, my inability to properly explain or an annoying habit I have; portraying things to always be a little better than they are for fear of worrying someone, anyone, I feel I have failed to expound the proper information.

Those following my blog understand much about this journey as time has been taken to carefully break down the finer aspects of each portion of this miraculous procedure along with all its uncomfortable after effects. But even with all of the writings many are left wondering and fearful as too all my wife is experiencing. I have tried my very best through each individual explanation anytime someone asks, it makes my heart happy to know so many care about my wife and I never mind the explanations. The curiosity of it all is not lost either. Many who don’t even know my wife have heard of her and want to know more! A little like a reality TV show only the reality is it’s my family not someone we don’t know, cast for whatever reason in a town filled with more drama than character. It is a privilege to share this information with everyone as I hope it opens hearts and minds to what every family battling any form of Leukemia are struggling with deep inside. I am working very hard at not letting any of you down.

What are we struggling with right now?

Like I said, she is sick, very sick. Everyday her body hurts, she is having tremors that last for hours on end, her throat is swollen and raw with sores developing, her bladder is filling with blood and spasming every 15 minutes or so, she has a catheter that comes out for fear of infection then goes right back in for fear of infection from her bladder spasming due to being filled with blood. She vomits daily from the immunosuppressant which is needed allowing new cells an ability to adapt to their new home and her body temperature has been bouncing from 99-104.5! Of course this leads to steroids, ice baths, more nausea medication, more pain medication, another bag of fluids and oh by the way she has gained 11 pounds since the transplant! Unfortunately those 11 pounds are fluid she can’t keep in her cells so a hefty dose of Lasix is onboard which by the way means she needs to urinate every 15 minutes against a spasming bladder. Phew that was a lot!

Jacy has no white cells and this fine tuning of medication will continue until her body either accepts or rejects the new cells. Having no white cells also means she risks becoming life threateningly sick over the simplest of germs entering her system. So every time she spikes a fever everyone (doctors,nurses) worries leaving her worried as well. I become worried too, but that my job, right? She told me something today after an especially hard episode last night where she was seizing and blowing up to 104.5; she said there is no place she would rather be, these were the best nurses anywhere and she has never doubted their ability to keep her going. That is a brave, solid statement from a woman who was frightened not more than a few hours prior with a 188 bpm heart rate.

It is incredibly hard to not be by her side. My worries are beyond control. Jacy had me promise I would be a father to our children first and a husband to her second. She wants nothing more than to have our children busy the entire summer so they don’t have a chance to worry about their mom and I am doing my very best but when I know she is suffering how do I just load up the car and go camping? How do I act like I am having fun when in reality I just want to sit by her side, hold her hand while she sleeps? I never need to do anything when I am with her but smile, kiss her hand and let her rest. I can do that for hours without flinching and it feels like I am making a difference!

For better or for worse, richer or for poorer, in sickness and in health till death do us part.

Those words mean something to me. So I will do what has been asked of me, by a woman who wants nothing more for her children than to be happy. I never in my life thought our marriage would end up here in this place. The strong well spoken, athletic woman who taught two spin classes a day, biked a centurion, ran a tough mudder and always looked for a way to make fitness a part of her day. The mother of four who never said no, running from one sports venue to the next while still maintaining a job, would be so unlucky as to contract Leukemia.

None of it makes sense and all of it seems so unfair.

Regardless, this weekend I am going to do what she has asked me to do. Running solely on faith the kids and I are loading up to go camping. Yes it means I won’t see her until Monday and its breaking my heart. Yes I will be worrying about every minute that I hear nothing about her progress, Yes I will make sure the kids have the very best time by putting on the happiest of faces so they never forget the time they went camping with just dad.

This is one of those times where you trust the one you love, have faith that God is looking over you all and pray that everything will turn out fine no matter what you do.

Thank you to all who continue to lift us up in thought and prayer. I hope I was able to adequately explain her current condition, please continue to pray for her spirits and wish us all luck.

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What is life?

theycallmebetty5 Comments

What is life?

By definition it remains the condition that distinguishes animals and plants from inorganic matter, including the capacity for growth, reproduction, functional activity, and continual change preceding death.

We as human beings grow, both in size and capacity. We human beings survive in part due to functional activity, be it creative, autonomous, or robotic. We human beings must continually strive for change or fear the repercussions of a life not lived; of growth never achieved from living through the shell of a dull robotic existence. So yes this definition rings true. But what I witnessed yesterday was beyond this so-called definition of life.

In the confines of a hospital room, surrounded by nurses, with my mother in law by my side I witnessed the gift of life. A baby wasn’t born, no umbilical cord, meconium, or gasping little lungs searching desperately for that very first breath ensuring life. What I witnessed yesterday was the greatest gift one human being can bestow upon another. The gift of being reborn through transplantation.

1138 am my wife received a healthy dose of bone marrow stem cells graciously donated from a 37-year-old woman somewhere in the United States. These stem cells once inside her body will hopefully find a way into their new home vacated through the untimely death of her immune system thanks to seven days of industrial sized chemotherapy.

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Jacy didn’t stand a chance without this procedure, death was knocking on her door. Yet through a gift so great, so kind, this mother of four, wife to one, now has a chance at life. The nurses stood silently, watching as cells made their way slowly into the I.V. tubing, floating effortlessly until the very moment they began disappearing inside her chest. Then Jacy was met with a very kind, heartfelt; Happy Birthday. Each nurse said happy birthday to my wife. Transplant time was placed upon the white board at the foot of her bed. My mother in law cried and I just sat there, dumbfounded, enjoying the first smile I had seen on my wife’s face in days. It was indeed her birthday, her brand new birthday, and a day that we all will never forget.

So yes life is all those things listed by definition above, but life is also a gift, a gift to be shared with others over and over again. Whether through acts of kindness, opening one’s eyes to the world around them, sharing your life with another to revel upon successes and failures during those elder years or life is given through birth and celebrated year after year in the creation of family. But you also have the power to permanently change someone’s life by giving them some of your “life” and by doing so alter the course of so many other lives.

To the 37-year-old woman who answered the call generously giving some of your “life” to save my wife from certain death: Thank you. You have brought hope to my children, kept my faith in humanity alive, allowed me another day to stare deep into my Jacy’s eyes, kiss her lips, hold her hand and tell her I love her. Your kindness has inspired others to join the bone marrow registry, continue to give blood, take a moment to understand Leukemia and what it means to those affected. You gave of yourself and by doing so hundreds of friends, family members and acquaintances cheered a sigh of relief when we received the news you were in fact THE donor with a 10 out of 10 match. Because of you her brothers are laughing, a father is now resting easier and a mother still cries, but they are tears of happiness not sorrow. We understand there is still a long road to recovery, but without you that road would never have been traveled. You ma’am are my hero, like a pebble in a pond your ripples are reaching far and wide. I don’t know you but I love you and as I look up at a moonlit sky this evening may our eyes meet upon the very same star and may you feel the warmth of my love falling back to earth reflecting upon your face and in your heart.

You are the definition of life…..

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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.

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Promises

theycallmebetty12 Comments

I don’t care who you are or how strong your resilience, when closing a door behind you to a hospital room within a Cancer/Leukemia ward holding the most precious of beings in your life! You cannot help but feel as though things are now permanently out of your control.

And you would be correct, for they are…

Three days ago Jacy and I got into our car. We had a relatively uneventful trip into the bay area, over two bridges, through San Francisco into beautiful Woodside ending on the famous Stanford campus. 19 months, 6 of those in treatment then remission and relapse all leading up to this moment. I cannot describe adequately to what end my brain continues to function. This moment, this very moment, where all I cherish is left in the skilled hands of others. Like knowing your final day on this planet, or being 18 and not quite comprehending that yes you too will one day be 50 then blinking only to recognize that day is tomorrow. It is more than I can handle.

13 years ago I promised to always take care of her, in sickness and in health, for better or for worse; to never leave her side no matter what. I am many things in this life, a jokester, a story-teller, a father, a coach, a teacher, sometimes even an asshole, but when I make a promise I do my very best to keep it! The ability to do so comes from having made hundreds of mistakes, letting numerous people down, lessons learned and realizing who and what you have become after living through personal tragedy and the suffering of others.

I promised her and I have always done my best. When we were trying to have children and nothing was working, I stood strong and promised her it would be alright, we laughed, we cried but I knew God would always provide for those with faith. We now have Parker and Jessica

I promised her that even though we would have no money for a long time we would make it after purchasing our ranch, because we knew it was where we wanted our children to grow up. We moved in with $250.00 dollars in the bank, we understood the payoff would never be monetary but would come from rewards reaped over time by our children. We are making it, it is a struggle at times but our children are amazing human beings, growing and thriving thanks to this place we etched out of the land; and they will forever know where home and family are to be found.

I promised her when we went to Haiti together I would let nothing happen to her or our group as we traversed a country still struggling with political power, corruption and strife. I did my best while on the island serving these beautiful people as local politics toyed with our mission. My promise was put to the test when our sail boat home tipped over in heavy wind and wave. Trying my hardest to hold as many as I could while remaining calm so others would be calm as well all while praying quietly, gripping those I love tightly and doing the best I could not to show my own personal fear I kept that promise.

I have promised her time and again. I have done my very best, but as I write this I am scared. Not something that is easy to admit. For I have promised her this will all work out, she is strong and it will be ok. But I am scared as hell. I am not sure how strong I can be this time. I am afraid of my own promises, that maybe they will be unattainable. My prayers feel unanswered, no calm has overcome my soul as in times past. I am tired of being tested by life, love and loss. I am growing weary and yet this is just the beginning. I feel as though my inner Betty needs a 5 month energy drink as opposed to 5 hour.

Closing this door to her room and walking away, leaving the one I love to modern science and medicine in hopes it will save her life is more than I feel I can handle. I pray she doesn’t suffer as others are currently suffering in the very wing she is assigned. I pray that God sees this woman for all she has accomplished in her life, knowing she has more to do here with people who need her smile, warmth and charm. I pray she heals with little side effects, becoming stronger day by day until she is the woman she chooses to become post-transplant.

I am praying all the time….

Jacy is currently on her 9th dose of chemotherapy in three days. She only has 11 more doses to go. Her spirits are up even though she hasn’t slept. As she puts it, I run to the bathroom, nap then an hour later run to the bathroom again. Her spirit is high, she is still feeling very positive, and I have no doubt she will show me the way as she has always done in the past through her amazing spirit. She is my wife, she is my best friend, and she is my life.

I promise……….

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Thanks Leukemia for reminding me you are still here.

theycallmebetty6 Comments

Three weeks since my last posting, holy shit where did the time go? Apparently Leukemia needed to remind us it is still here?

Seriously what a busy three weeks it has been too! Children out of school, working to prepare the ranch and Jake for a week-long stint in Bishop California for the CHSRA High school rodeo finals, setting Cody up for success in caring for his mother and siblings while we were away, fixing then re-fixing, then repairing only to abandon my truck because she just couldn’t make the trip to bishop hauling our living quarters horse trailer. Borrowing a friends truck (thank goodness for good friends) to make the trip safely, then watching as Jake finished 11th in the state steer wrestling and 17th in the state cutting.  He was the only rookie to make it into the finals for steer wrestling! Something he is and should be very proud of as the finals were filled with some of the most talented kids I have ever seen!

This all leads us to today.

This morning I awoke pondering yesterday and tomorrow. Yesterday we (Jacy and I) spent the whole day at Stanford signing paperwork (you know the dont sue us if something catastrophic happens legal mumbo jumbo), meeting with doctors, understanding the upcoming schedule; more lab work, heart monitoring, and ultimately the dreaded sit down talk where we learn from -0 day-to-day +1 what will be happening to her body and what might possibly happen to her body in the form of acceptance or rejection.

The first week will be 16 doses of chemotherapy so strong it could quite possibly kill her, of course only in a low percentage of patients, but it does do damage to the heart muscle, kidneys and liver. She will be very sick during this time and I will not go into the specifics as it crosses over ones privacy.  Once she is down to zero or no immune system what so ever, she will receive the Bone Marrow transplant, which consists of nothing more than stem cells transmitted through a blood transfusion.  She will be given drugs to suppress the new immune system which have a whole slew of nasty side effects of their own. The new immune system will need to find its way through her body on its own without overreacting to its new home. This will be over the course of the next few weeks and where odds are strong some form of graph vs host disease will take place.

Graph vs host can lead to anything from minor sores in the mouth to minor or major skin irritation to life threatening rejection to which we are told things “could” get quite dicey if that takes place. Phew! Nothing to be scared of yet, right?

If all goes well, the body accepts the graph with the help a few drugs then within three weeks she can leave to outpatient treatment where her caregiver (me, parents and siblings) will monitor everything she eats, her temps, appetite and overall demeanor.  Once she hits the 12 week mark with steady improvement she has the ability to come home.  Yay!

Once at home (get ready for this) Jacy, who lives on a ranch and loves her horse more than most people like their friends; will not be allowed near the horses for up too two years! She also has to wait a minimum of a year just to go back to work and be surrounded by the young minds she loves so!! Listen I can hear you all now: hey at least she will be alive right? Yes this is true. But look at it this way, everything short of your children that you love has been taken away then held right out of reach for you to see everyday.  That would be pretty painful and hard to handle while keeping a positive attitude about survival. You are alive and it does leave something to fight or look forward too, but can be depressing at the same time.

Tomorrow

So tomorrow is that day. WE load up the toters she has packed her life into over the weekend; she kisses her children goodbye (the hardest things she has ever had to do) and we make what I assume will be a very somber, quiet, fear/tear filled trip to her new home for the next three to four months. I will then have a very hard ride home as now I will truly be a single dad with only being able to visit a couple of times a week per her wishes. (her wish is to keep the kids having a normal life and summer before school) Once school starts I will be there everyday if possible, running back and forth to be by her side. She knows what lays in store, she knows there will be days of doubt, pain, sickness and struggle, she knows that the outcome is unknown as to severity of reaction and she knows it is going to be hard, very hard.

She also knows she has a whole crew of people praying, she knows she has the unconditional love of an entire family, and she knows I love her more than anything in the world. In her heart she knows she will beat this and win.

This morning I stared at her sleeping knowing it will be one of the last mornings for a very long time I will see her angelic face next to mine. I fu%#ing hate this shit!

Deep breath, stand strong, we will survive this and she will kick cancers ass one more time!

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The final countdown

theycallmebetty4 Comments

Kaiser Hospital is the happening place! Anybody who is anybody goes there and only the most beautiful of people roam these hallowed halls of floor number five. Checking in today felt so normal, familiar like one feels when putting on their pants. Pulling up to the front, participation for all aspects of moving into Chez’ Kaiser no longer requires attention from both parties. Previous trips required my service in moving luggage, assisting with check in and holding her hand all the way into what ever guest suite we had been assigned. But no more! Unfortunately or fortunately depending on how your perception clarifies this murky glass, my role has been downgraded to nothing more than that of husband dropping wife off for work status. Not that I am any less important, it just seems as though our journey has over time become routine.

Once inside her luxury suite, smiles laughter and hugs are had by all who grace this threshold. It really is like coming home from an extended journey. That is if home has an adjustable bed, vinyl curtains, bleached floors, IV stand that looks like R2D2’s anorexic cousin, a really small TV with a channel solely devoted to showing some random nature picture luring your delirious mind into believing one day you will get outside again. One cannot discount the three square meals a day, nutritionally balanced to meet your every carbohydrate need. Yepper it is just like home!

I know I have said this before but I feel the importance to reiterate just how much I love the staff here at Kaiser Vallejo! They are some of the warmest, kindest human beings in medicine! It is obvious it takes a special person to handle cancer patients, let alone continue treating each and every patient as though they are family.  I have never feared leaving my wife here, not one time! My wife means everything to me and you cant put a price on that type of mental security.

Dr. Truong arrived a few minutes after Jacy settled in, it was great to see her! Dr. Truong has a genuine smile, a kind heart and has been the largest advocate for my wifes care. She also leaves us feeling like we are part of her family. Jacy and I are always super happy to see her; she gives us straight facts, tells us what path we are on, and listens to any concerns we might have with a kind ear.  Jacy has felt blessed from the moment we connected with Dr. Truong and that has been a blessing as well. Nothing beats having the utmost confidence in your doctor and the care you are receiving!

After a brief rundown from doc, it finally hit home for us both this is indeed the final countdown! 5-7 days of chemo with Kaiser, a couple weeks at home with a few blood transfusions thrown in for good measure, then on June 22 it is off to Stanford for another bone marrow draw, chemotherapy and finally the big day! July 2nd, is bone marrow transplant day! Many more trips to the hospital, days with allergic reactions, blood loss, crazy cell counts, weakness, weight loss, hair loss, hives, nausea, weakness and anxiety have all led to this final countdown of healing and redemption!!

Becoming cured from this dreadful disease is going to be an ongoing uphill climb! 4 months of separation from the ones she loves, four months of crazy stuff that is going to happen to her both mentally and physically!  Through all of this there is one thing I know for sure; if anybody can beat this horrible disease it is my stubborn, gritty, ornery beautiful wife!

So please say a prayer, hold a kind thought, it is definitely going to be a long screwy, jigsaw puzzle of a summer and we could all use the good mojo you can muster to get us through!!

more to come…..

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We have a match!!

theycallmebetty4 Comments

Time is fleeting and days roll by like road signs on a freeway. Moments consisting of only a glimpse, a stare, are gone as fast as they arrived.

We are counting down days as this weekend rapidly approaches. Tuesday Jacy readmits herself for another round of chemotherapy. 5-7 days hospital bound. So this weekend is all about family. Cody is home and all of the kids have been pestering him, hoping for one on one time with their older brother. To Cody’s credit he has taken the time, spending it carefully with each one of them, letting them do what they want to do and fostering a fun, over the top attitude. We are proud of this boy, he went off to college and came back just a tad bit grown up and is becoming one heck of a man.

Counting and counting, days, hours, minutes and seconds. One more day till chemo, many more days till total sickness, and a few more days until blood transfusions; then just as you start to feel like yourself again, hives! Or headaches, or difficulty breathing, or the inability to stay awake because you need Benadryl for the hives, or blood transfusion or because you just need to sleep.

Once all of these medical cocktail concoctions are hammered out, it is time to throw in a Bone Marrow Transplant. Speaking of a Bone Marrow transplant, we learned on Thursday of this week a match had been located, identified, notified and accepted! Not just any match mind you either, this match was a 10 out of 10!!! Pretty super great news! Some really awesome person took the time to get swabbed and now will inevitably change the course of both their life and my wife’s forever! Thanks to this angel, Jacy now has the best recovery chances yet! In case you were wondering or asking yourself right now; what does ten out of ten really mean? 10/10 is part of HLA matching for a suitable donor and here is everything you need to know about matching and the importance of that donor via my favorite web site: Be The Match!

HLA MATCHING

Human leukocyte antigen (HLA) typing is used to match you with a donor for your bone marrow or cord blood transplant. This is not the same as ABO blood typing. HLA is a protein – or marker – found on most cells in your body. Your immune system uses HLA markers to know which cells belong in your body and which do not.

Be The Match Registry® is a listing of potential donors and cord blood units and their HLA types. The best transplant outcome happens when a patient’s HLA and the donor’s HLA closely match.

HLA matching basics

Half of your HLA markers are inherited from your mother and half from your father. Each brother and sister has a 25%, or 1 in 4, chance of matching you, if you have the same mother and father. It is highly unlikely that other family members will match you. Under very rare circumstances, family members other than siblings may be tested.

About 70%, or 7 out of 10, patients who need a transplant do not have a suitable donor in their family. If you do not have a donor in your family, your transplant team may look for an unrelated donor or cord blood unit for you on Be The Match Registry. When a search is done on the Be The Match Registry, it includes a search of more than 22.5 million potential adult donors and more than 601,000 cord blood units on lists from around the world.

Role of HLA matching

HLA matching is important because a close HLA match:

  • Increases the likelihood of a successful transplant.
  • Improves engraftment—when the donated cells start to grow and make new blood cells in you.
  • Reduces the risk of complications after transplant, especially graft-versus-host disease (GVHD). GVHD is a potentially serious complication. GVHD occurs when the immune cells, which are part of the donated marrow or cord blood, attack your body.

HLA matching requirements

There are many HLA markers. Each HLA marker has a name. The names are letters or combinations of letters and numbers. Doctors review at least 8 HLA markers for these minimum requirements: two A markers, two B markers, two C markers, and two DRB1 markers. Some doctors look for an additional marker, called DQ, to match.

An adult donor must match at least 6 of these 8 HLA markers. Many transplant centers require at least a 7 of 8 match. Because cord blood cells are less mature than adult donor cells they have less strict matching criteria. A cord blood unit must match at least 4 of 6 markers at HLA-A, -B, and -DRB1. These guidelines are based on scientific studies of transplant results.

Example A shows that the patient’s markers match the donor’s. When HLA markers A, B, C, and DRB1 from the patient and the donor match, it is called an 8 of 8 match. When A, B, C, DRB1, and DQ markers all match, it’s called a 10 of 10 match.

Example B shows that one of the patient’s A markers does not match one of the donor’s A markers. Therefore, this is a 7 of 8 match or, if the DQ marker matches, a 9 of 10 match.

Confirmatory HLA Typing

HLA typing is a complex process that can be done at different levels of detail. Patients always have HLA typing done at a high level of detail. Blood is tested using laboratory methods that check the exact HLA markers.

Every potential donor has a special type of detailed HLA typing (also called confirmatory typing) done before being chosen as the best match for a patient. Confirmatory typing is done to make sure the patient and potential donor match at a detailed level.

 

 

Other factors for a successful transplant

HLA matching is the most important factor but not the only factor that can affect your chances of having a successful transplant.

  • The number of blood-forming cells needs to be suitable for the size of the patient. Larger patients need more blood-forming cells. Cord blood units have fewer cells than adult donors. Sometimes, more than one cord blood unit is needed for a patient.
  • Different donor characteristics have an impact on a transplant’s success. These include the donor’s:
    • Age
    • Gender
    • Blood type
    • Body size
    • The number of times a female donor has been pregnant

If more than one well-matched adult donor is found for you, your doctor will look at these factors.

  • Infection history can also affect transplant outcomes and choice of a donor. Before transplant, doctors test patients and donors for a common virus called cytomegalovirus (CMV).

Finding donors for patients with less common HLA types

Transplant centers may face a greater challenge finding a match for some patients because some HLA types are less common. HLA types are inherited, so the best chance of finding a suitable donor may be with someone of a similar racial or ethnic background. Some people have very diverse tissue types that reduce the chances of finding suitably matching donors.

You can see how a “10 out of 10” match is pretty darn great!!! We also learned the tentative date for her transplant is scheduled for the 22nd of June. Then things get turned a little further upside down here on the ranch. We as a family had a long talk about everyone’s responsibilities while mom was away this summer. Three months is an eternity in a child’s mind and that time frame really hit Parker hard. Through a few tears and a lot of hugs he came to realize the importance of mom’s latest adventure, and even though he didn’t like the idea, he agreed to be the best strongest little dude he could be. I cannot imagine being a young guy trying to process all this information in conjunction with your mom declaring she will be absent for the entire summer.

Other than one small emotional blip, everything else seems to be coming together just fine. We all know our roles, and Jacy know hers is to do nothing more than heal, get better and come home to her family.

Only time will tell what our summer brings..

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