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

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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.

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A Transplant update.

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?

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..

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

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.

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

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!!

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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Another crazy week

A week gone bye.

What’s in a week? 7 days, Mon-Sun, 5 days dedicated to the working machine, school, children, and so on. This last week has been one hell of a ride let me tell you! Starting the Friday before last Jake and I packed the rig with gear and horses; pointed east we headed off for the last CHSRA D-3 rodeo of the year! Jake was looking to score at steer wrestling and maintain a second place standing in cutting. His team roping partner Breanne and he were hoping to finish the year without another goofy mishap!

Saturday and Sunday went by in the blink of an eye. When it was over, no steers hit the ground, Jake slipped from second to fourth in cutting and he and his team roping partner finished the year the way they started, laughing at each other’s crazy luck. Now it seems as though the weekend could be interpreted as a bummer, but nothing could be further from the truth! All the kids had a great time, points were tallied and when the dust settled Jake made state finals in Steer Wrestling, Cutting and earned the Rookie of the year All Around Cowboy award! To say he was excited would be an understatement! He put on a tough face, but smiled his boyish smile all the way home.

Speaking of home, the wife had enough strength to take our daughter to her softball game on Saturday. This of course left her drained on Sunday, but it was a great outing as she finally was able to see and converse with people wondering about her condition and how she was doing overall.

Monday arrived leaving us scrambling once again as fair time was upon us. Being a ranch family all three kids had entries in the fair. Jake-a lamb, and a welding project, Jessica-a pig, Parker-two pairs of meat chickens! Washing, trimming, cleaning tack, moving equipment and working horses were all part of a very long or short depending on how you perceived it, day.

Tuesday, we moved all the animals onto the fairgrounds an so began a long week of 6am to 8pm days. Feeding, fitting, showing, and generally watching our children have the time of their lives! Nothing beats fair time when you are a child. I remember quite well how I looked forward to fair week, showing my lambs and hanging with all my friends from around the county. It’s a time of freedom, competition, hard work and all the corn dogs you can shove into your gullet! If you are lucky at the end of the week your animal sells at auction, leaving you with a budget for next year’s project.

Jacy couldn’t attend the fair as our fear of contamination from an unknown source lingered like a dark cloud. It was hard for her to stay home, not able to participate in her children’s adventures during the week. I tried my best to send her pictures and keep her updated, as did every other person with a camera from our loving little town. She had planned on attending show day with a HEPA mask, but other people from medical places had different plans for my wife unbeknownst to her. So pictures continued arriving via text from many of the moms wanting to ensure house ridden Jacy wasn’t missing a moment with her children. Small towns are a blessing.

Now if being stuck at home for this week wasn’t enough; Jacy’s doctor called to say her results from the last marrow draw we good. Residual Leukemia remained in small numbers so the best course of action was to move up the hysterectomy by a week!! Wait? A week? Yep you guessed it? That placed the surgery day smack dab on top of show day at the fair! The “other people” had spoken! Dream killers! So with a phone call, Jacy’s mom took the day off work, dropping everything to ensure her daughter was taken care of and her grandchildren had their father by their side on show day! I love my mother in law. Not many guys can say that I think. But I do. I think she is a pretty cool, whacky, funny lady who would do anything for her children.

So that brings me to the real gist of my reflection. The hysterectomy.

Hysterectomy is the surgical removal of the uterus. It may also involve removal of the cervix, ovaries, fallopian tubes and other surrounding structures.

Usually performed by a gynecologist, hysterectomy may be total (removing the body, fundus, and cervix of the uterus; often called “complete”) or partial (removal of the uterine body while leaving the cervix intact; also called “supracervical”). It is the most commonly performed gynecological surgical procedure. In 2003, over 600,000 hysterectomies were performed in the United States alone, of which over 90% were performed for benign conditions.[1] Such rates being highest in the industrialized world has led to the major controversy that hysterectomies are being largely performed for unwarranted and unnecessary reasons.[2]

Removal of the uterus renders the patient unable to bear children (as does removal of ovaries and fallopian tubes) and has surgical risks as well as long-term effects, so the surgery is normally recommended when other treatment options are not available or have failed. It is expected that the frequency of hysterectomies for non-malignant indications will fall as there are good alternatives in many cases.[3]

Oophorectomy (removal of ovaries) is frequently done together with hysterectomy to decrease the risk of ovarian cancer. However, recent studies have shown that prophylactic oophorectomy without an urgent medical indication decreases a woman’s long-term survival rates substantially and has other serious adverse effects.[4] This effect is not limited to pre-menopausal women; even women who have already entered menopause were shown to have experienced a decrease in long-term survivability post-oophorectomy ~ Wikipedia

That’s right, in the middle of all we as a family had going on this particular week, combined with the fact my wife was just starting to feel better, a hyterectomy was thrown into the mix! Why? Because she cannot have the Bone Marrow Transplant without it! Why? Because she has Polycystic Ovary Syndrome!

I know right? So what is Polycystic Overian Sysndrome?

Polycystic ovary syndrome (PCOS), also called hyperandrogenic anovulation (HA),[1] or Stein–Leventhal syndrome,[2] is a set of symptoms due to a hormone imbalance in women.[3] Symptoms include: irregular or no menstrual periods, heavy periods, excess body and facial hair, acne, pelvic pain, trouble getting pregnant, and patches of thick, darker, velvety skin.[4] Associated conditions include: type 2 diabetes, obesity, obstructive sleep apnea, heart disease, mood disorders, and endometrial cancer.[3]

PCOS is due to a combination of genetic and environmental factors.[5] Risk factors include obesity, not enough physical exercise, and a family history of someone with the condition.[6] Diagnosis is based on two of the following three findings: no ovulation, high androgen levels, and ovarian cysts.[3] Cysts may be detectable by ultrasound. Other conditions that produce similar symptoms include adrenal hyperplasia, hypothyroidism, and hyperprolactinemia.[7]

PCOS has no cure.[8] Treatment may involve lifestyle changes such as weight loss and exercise. Birth control pills may help with improving the regularity of periods, excess hair, and acne. Metformin and anti-androgens may also help. Other typical acne treatments and hair removal techniques may be used.[9] Efforts to improve fertility include weight loss, clomiphene, or metformin. In vitro fertilization is used by some in whom other measures are not effective.[10]

PCOS is the most common endocrine disorder among women between the ages of 18 and 44.[11] It affects approximately 5% to 10% of this age group.[6] It is one of the leading causes of poor fertility.[3] The earliest known description of what is now recognized as PCOS date from 1721 in Italy.[12]

When you have a bone marrow transplant in conjunction with heavy doses of chemotherapy the whole “heavy nonstop menstrual cycle” has life threatening consequences. So no argument to be had, out with that Uterus! Buh bye!

Now this particular operation seems simple enough, it is an outpatient procedure after all. Go in at 2pm be out and home by 8! Whoo hoo, like going out for dinner, only there is no food, no wine, no husband and only 6-8 of your not so closest friends turning your guts into a Jacy frappe!

8 pm became 2am when she arrived home it was obvious she was dealing with incredible pain. After helping her upstairs, getting her settled into bed, I knew it was going to be a rough night for us both. She slept most of the next day as the children and I ran back and forth from the fairgrounds. But with her mom at her side she was well cared for. Day two led to a Pit Viper like attitude due to swelling, pain and a resurgence of hives covering her body or more specifically the incision sight. Day three brought a few smiles and a lighter attitude. Today the swelling remains, her body aches and the hives just refuse to subside.

So we continue to take each moment one day at a time. It sounds as though once healed up from this latest procedure she will head back to the hospital for five more days of chemotherapy in preparation for the bone marrow transplant which should take place sometime in June.

That was our week, glad I could bring everyone up to speed. Just another notch on the old day to day, week to week, month to month belt. Our spirits are still high as we march forward towards complete remission.

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And now to the anchor desk for an update!

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Wednesday morning we arrived inside Kaiser Vallejo room H22 at 0600. Jacy signed herself in and before long an elderly volunteer attendant called our name. She was in her 70’s and struggled a bit to stay on task. Her manner was direct as there was an apparent agenda to follow judging by the clipboard she maintained a death grip upon. It was obvious with her demeanor we were one of her first for the day but definitely wouldn’t be her last. I tried my hardest taking her seriously but every time we made eye contact I swear her wig moved a tad off kilter from one side to the next. She was sweet, a bit confused at times, but doing the very best job she could. I pictured her as a young military nurse either late in WW2 or during the Korean War. She just had that way about her. It was definitely a pleasure meeting her.

She scooped Jacy up and the two scurried away towards a prep room, her finger pointed my direction ordering me politely to sit and stay inside the waiting room. There was a large television inside the waiting room showing a row of numbers on the screens left side with colored bars running towards the right. These numbers were very reminiscent of college I.D. numbers used for testing purposes. Each number was assigned to a patient. A color bar associated with each number identifies which stage of treatment your loved one (patient) currently resides. It was a nice little system, allowing family members to know exactly what’s happening without constantly barraging the attendants for answers.

The old dame came back into the waiting room after around fifteen minutes, staring at her clipboard while trying her best to pronounce my last name. (Good luck right?) Reaching my feet she wanted confirmation that I was in fact Jacy’s husband? My first instinct was to remind her we had in fact talked not more than fifteen minutes ago and at no time during those fifteen minutes had I rushed out, found an attorney, judge and open courtroom to obtain a legal divorce! Anyways my mother taught me better, so politely I smiled and nodded yes! Yes I was still Jacy’s husband. Her retort was: phew! I almost had you confused with that gentleman over there who is wearing a shirt similar to yours. Watching her wipe her brow and shake a little more it was then I decided I loved her, she was perfect and nothing could possibly go wrong today! She motioned for me to follow her. She walked quickly and with purpose down a long hallway, explaining hospital rules for visiting; where I should sit, what I should say, while pointing out every door, corner and hallway, so when the time came I could find my way back. I bit my tongue for I didn’t want her to see me chuckling as she was quite serious and still cute as a button!

Moving into the prep room area which consisted of a long rectangular room housing multiple cubicle style, curtain separated mini rooms, lining the walls all the way around its corridor. A bed was placed inside each cubicle complete with computer, I.V. stands, oxygen, Sp02/heart monitor and so on. Jacy laid upon a bed, I.V. in place, one piece backless gown, the fashion rave of all hospitals, securely affixed and a hair net. It was quite odd a woman who holds not one scrap of hair to her body needed a hair net? But I suppose rules are rules.

Jacy smiled, I sat beside her and listened as her anesthesiologist went over procedures, how she would feel, along with what to expect. He was a curt German man with a fairly strong German accent. Now every German I have ever met has an incredible dry sense of humor (which I LOVE) and after a few moments of my wife and I winking at each other while dropping one liners his direction, he proved to be no different. He was witty, charming and an very interesting man to talk with. I was sad we didn’t get to spend more time with him.

Dr. Truong arrived, all smiles as always. She is hands down the coolest doctor I have ever had the pleasure of knowing. I cannot believe how above and beyond I feel she has gone with my wife. They have created an actual friendship outside of the doctor/patient relationship. Of course once you meet my wife it is very hard not to become her friend. We chatted about the marrow draw, how long it would take under sedation and she reaffirmed how sorry she was Mondays draw couldn’t be completed back in her office. It was understandable, Jacy just could not take any more pain, and with 6 prior draws from the same site, number 7 just wasn’t going to happen. We all kept talking as supplies were gathered and everyone laughed at a few self-deprecating jokes targeting us both. We laughed and told stories about our families and when the doctor gave her a dose of Versed which he explained allows the patient to forget the surgical experience; I looked him in the eye reiterating the whole she’ll forget everything portion to which he looked confused and stated; yes she will forget. Not wasting any time I grabbed Jacys hand announcing loudly there was something I needed to tell her! (Pause for effect)  Everyone started cracking up and Jacy nodded off to sleep with a smile on her face!

40 minutes later Dr. Truong found me to report everything went as planned. She gave me a giant hug and asked how I was doing? I said fine, she smiled and we talked about what the future held for our girl. Basically it comes down to this marrow draw and the panel being tested. If Leukemia has resurfaced, off to chemotherapy we go. If little to no Leukemia is present, then off to receive a hysterectomy, followed with a few weeks rest and then? ANOTHER ROUND OF CHEMO!!!!! YAYYYYYY! Dr.Truong says Jacy is the perfect candidate! She is young, strong, and has handled chemotherapy better than most patients. Jacy also has a type of Leukemia which is chronic so the transplant is a must. There are some interesting markers hidden within her Leukemia cells or blasts that could be cause for concern, but doc thinks they are very manageable and if they become unmanageable there are some new experimental drugs with great success rates! So all things look great!

Once the final round of chemo is finished, we set the date and prepare for Stanford and a Bone Marrow transplant! Best case scenario we are looking to be in Stanford around the middle to end of June!

So keep the prayers coming! We feel them, Jacy definitely feels them. We are continually grateful to all who are following us in this journey, holding us and our family up in prayer.

God bless you all..