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

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.

IMG_3050

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.

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.

IMG_0828

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.

stem cells

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…..

stars

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.

images-18

A Mystery is afoot!

images-3

Two days ago while speed shopping through our local grocery store, my eyes cruised the ever dreaded ice cream isle. Now being one that doesn’t particularly follow any diet fad, weight loss program or calorie counting insanity. It has come to my attention that this particular body no longer holds that stealthy shape once honed through hard work and persistence previously acquired prior to Leukemia invading our household.  Although my weight does fluctuate pre and post beer consumption the true curse ensnaring my ever rising muffin top is ice cream! MMMMMMMM Ice cream! That frozen tasty, melty goodness oozing with everything from strawberries (a fools trick towards health) to salt, caramel and chocolate! If it wasnt a frozen item I would believe the devil conjured its ingredient infusion himself.

Staring at a thousand or so manufactures of ice cream, much like micro brews these days it seems everyone is an ice cream perfectionist and or connoisseur. This steely glare caught a reflection of something different, something attractive and suave. Its packaging reeking of taste and elegance. Gelato!

Oh yes, I have heard of you gelato! Many a times while strolling some special event or walking through the inner workings of our local college town this confectionary dream buzzword arises! Gelato! Have you had some? Oh my goodness I just paid $5.50 for a teaspoon sized scoop but it is soooo worth it!!! Gelato; Its Italian obviously, so therefore anything Italian must be good right? No wait, anything Italian must be GREAT! Italians are the true inventors of exceptional culinary delights much to the chagrin of all Frenchman everywhere! Of course being an Italian creation, backed by the mass consumption of anyone either in college or living superbly, comfortably inside a tax bracket that none of us will ever see, well then Gelato must be that river of gold we should all heartily dip our cups into while the dippin’s good!

Oh by the way before I go any further, Gelato is just Italian for Ice cream, so drop all the pretentiousness while eating it in front of your friends. It was and is pure marketing genious but from an Italians standpoint (uh me) it just makes you look really dumb. Although amusing, dumb none the less..

Gelato it is; my wife is craving some ice-cold sweet goodness for her throat which remains sore from having a breathing tube inserted during her operation. It is also just the excuse I need to purchase me some fat building frozen calories! Hey its bulking season and that waistline isn’t going to grow itself!!

Two tubs purchased, one for me and one for her. Both lovingly cradled and carefully placed inside our freezer on the top shelf for all to see. That is right little Timmy we dont have ice cream here at our house we have Gelato!!! Hee hee..

A few days go by, my wifes tub of caramel and sea salt goes unmolested. Placed neatly below her popsicles it is very clear this tub belongs to her and no one else. On the other hand my tub of strawberry (yes I fell for the health trick thing) chocolate truffle is decimated. Empty container lying in the trash, there is no hiding the fact you can probably hear my fat cells expanding, bursting as I walk through the kitchen.

Then comes yesterday. A text, just like the thousands of texts I receive on a weekly basis pops onto my phone. Casually glancing my phones direction, its (the texts) words confuse me, as though I am four years old trying to learn the alphabet my eyes blink rapidly working overtime at shape recognition!

Jacy: Did both ice creams get eaten?? I’m craving some and its gone??

Ok no time to panic, you got this, a simple answer, I mean it was there last night right? RIGHT? Oh yes I remember, My middle son grabbed it and asked for some, seeing it was unopened he was asked to put it back and remember that particular bucket of Gelato (said with a snobby undertone) was for mom!

Betty: No the other one was there last night unopened.

Phew, maybe she just didn’t see it.

Jacy: Its gone!!! I can’t find it!!

There is no way its gone! What the hell is she talking about!! Maybe Leukemia or Benadryl has her seeing things, maybe the freezer has become like the Mojave desert and she is only seeing a frozen mirage!! It was there, unopened, sealed tighter than fort Knox, at eleven o’clock last night!!!! Crap what do I say?

Betty: Ah second shelf? It was under the popsicle??? (Three ??? means sheepishly asking)

Jacy: GONE!

And so the mystery began! First order of business was find where the ice cream went or at least where the remnants (the body if you will) of the ice cream was disposed of. The body was found sometime later in the downstairs freezer, the top portion of Gelato mercilessly scraped away leaving nothing but the soft underbelly exposed for consumption. I now had something to go on.

After throughly questioning myself without a lawyer present because I hold no guilt and really I am not much of an interrogator anyways, it became clear we had two main suspects.

Middle son and youngest son.

Now the daughter was off at science camp but I was fairly certain somehow her name would arise as a suspect regardless. Both boys when questioned held to their stories.

Youngest son: uh, I was asleep? Plus I am scared of the dark so there is no way I am going downstairs into the dark kitchen to eat ice cream. No way!!

Middle son: why would I steal it? I would just tell you I ate it and take my consequences!

Both held compelling arguments.

The youngest had opportunity but no real motive as fear restricted his very movement. The middle child had motive and opportunity yet the whole owning up to it portion threw us for a loop! Could it be a ploy? A distraction keeping us from the truth?

We threw every tactic we knew the middle boys direction; from good parent bad parent, mom sweet and innocent; you wont get in trouble honey, honest, just tell mommy the truth, with me scowling in the background, arms crossed ready to slam my fist on the table at any moment! (I KNOW IT WAS YOU!!!!) To confused Jimmy Stewart parents; Well, well gosh little buddy none of this is making sense; shucks you got us in a real pickle here; maybe, just maybe you could help a feller out with a decent explanation? We even resorted to consequence parents; Just tell us you took the ice cream, oops I am sorry, the Gelato and we will just chalk it up to poor judgement on your part. If you dont tell us you took it, you can’t go to State for rodeo. NOTHING!!!!!

None of it worked! Nothing worked on either of them!!! Holy crap, either we live in a house with the very best liars in the world (seriously we couldn’t get a read on either one) Or a ghost ate it, then levitated the Gelato to the freezer downstairs where it was carefully placed to look like it had been there nestled amongst the Ego’s all along! These boys should work for the CIA!!!

Of course the best explanation offered came from the youngest. Maybe just maybe the middle child was sleep walking, (yes he does sleep walk to the amusement of the youngest and myself) his sleep walking self finally figured out how to get downstairs where he opened the freezer door, took out the ice cream (we are calling it what it is now) opened it, found a spoon, then took it downstairs to eat it amongst the laundry in the basement where no on would find him sleeping and eating. When he was finished he placed it back into the freezer so he could sleep walk to it later? Yep that sounds plausible. All I could picture was the sleep walking scene from Stepbrothers and sorrow for the future wife of said middle child. images-5

In the end the investigation hit a dead-end.  We determined someone ate it, someone moved it, someone tried to hide it, and Gelato is really just dumb old ice cream.

Rubbing my head the case is placed into the unsolved files.

Maybe somehow my daughter teleported her ice cream eating skills from 200 miles away really did do it!!! Stranger things have happened right?

images-6

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.

images

 

A little stronger one day at a time.

It has been a pleasant last few days.

Jacy is feeling a bit better, although she tires easily and can’t seem to get enough sleep. Jacy has been strong enough to venture out and watch her daughter play softball, take a trip to the store on her own and even drive herself to the doctors on a few occasions. Her cell counts continue to rise and everything looks to be on track for the next phase. It is nice to see my wife with color in her skin and a smile on her face.

Monday we have another bone marrow draw, determining which direction she will go in regards to further treatment. Hysterectomy or another round of chemotherapy, hence another 7-10 days in the hospital. This whole process is slow and steady. We all know slow and steady wins the race so all fingers are crossed.

Many people have come by the house, checking on our family’s wellbeing, while hoping to catch a glimpse of my wife. It still leaves me speechless as to the outpouring of love and compassion shown our family. We are truly blessed and the spirit of goodwill will indeed be paid forward.

Someone asked me the other day why I write so openly and freely about what is happening with our family. This person couldn’t understand how sharing all the private details was beneficial to anyone; that it would embarrass this person to have people, even strangers know everything so intimate about their life. I assured this person I don’t write about everything that is happening as some portions need privacy while other portions are either to disturbing for discussion or provide quite a visual picture. I choose discussing the emotional toll as opposed to citing visual references. For everyone can relate to emotions associated with the human condition when referencing such an event.

Writing has also allowed me to answer everyone’s questions in one simple forum. Instead of answering a hundred phone calls or numerous texts, blogging has given us the freedom to let all we know what is happening and when. It is like a virtual bulletin board for all to see and interact.

Through this process I have found a voice, for you see when you look up Leukemia, its symptoms, research, web pages and blogs, everything revolves around knowledge, diagnosis and the patient. Not many pages dedicated to the family leukemia effects. We have a say, we the family have emotions, fears, questions and nightmares. Yet we are not anywhere near the circle of trust when it comes to answers. When writing my very first page back in 2013, I wrote out of fear. Like a new probationary firefighter walking into his assigned station for the first time, I had a million questions, a huge responsibility, a fear of the unknown and the knowledge that no matter what, I needed to prove myself worthy. Someone depended on me!

In 2014 we survived three chemotherapy sessions, numerous hospital runs, countless emergency room visits, and many long nights holding her hand as all seemed hopeless. Temperatures, allergic reactions, swelling in places you never thought could swell to such an extreme, hives, night sweats, day sweats, the inability to stay awake, the inability to fall asleep, stomach issues, skin issues and so on. Living through sorrow filled moments and walking amongst the clouds as her doctor told us she was in remission.

2015 has brought us right back to square one. Hearing those dreaded words; it (leukemia) is back.

So as I said; I have found a voice. But I have decided it is not a voice for myself, but for anyone else who finds themselves holding their Leukemia ridden significant other or family members hand in the middle of the night. For that person of support who finds themselves alone, the only one standing between the people they love and utter emotional chaos! When faced with so much responsibility, endless reams of information, knowing you need to be strong but don’t know how. I hope and pray that person sees my blog and has the courage to ask me for help. This is a community, Leukemia has a community and even though we don’t carry this cancer we should be doing our best to support one another, so we may be stronger when it comes to supporting those who do carry this cancer! It is just the way I feel.

In my last blog post a woman left me a comment about her 39-year-old husband who’d just been informed he has Leukemia. They have children and her note felt fearful. I hope with all my heart she received my reply. Letting her know I would be here if she needed help. That is what this is all about. Building a bridge of support for all of us “support systems”.

As always I love all of you who continue to show us love and support.

More to come…..

Leukemia- handling it all…

Going through this arduous process, I have come to a simple and strangely satisfying resolve in regards to Leukemia. Becoming Positive and proactive not Negative and reactive.
Now becoming negative and reactive is relatively simple. Freak the hell out at any bit of news from any doctor, nurse, floor attendant or even hospital janitor! Then act as though the world is coming to an end! Happens all the time! I am not being callous it really does, it is human nature. Seriously though most janitors have been there so long they would probably qualify at least to the ER tech level! (This is humor any ER techs don’t get butt hurt). There is also a positive-reactive which centers on acting quickly and decisively, a wonderful quality I may add.
Positive and Proactive is a learned skill; thinking calmly, forming a plan, and handling adversity with a determined end result in mind! But becoming proactive takes a little more finesse, a tad bit of dulled nerves as to not jump at the slightest verbal or non verbal queue given by any one person wearing a lab coat, a great sense of humor and a good pocket pint of whiskey stored inside your jacket! (Heather R, you devil child that was for you)
First time around when we heard the word Leukemia; well actually it sounded more like

L E U K E M I A… (slow motion, deep sounding with scary movie music overtones).

I freaked, we freaked, and our friends and families freaked with us! We were all reactive on both levels stated above, and justifiably so! Positive and Negative reactive. Leukemia is a word, a name, a label that incites visions of wheel chairs, frail wasted away human beings and of course losing our cherished loved ones to death. What it doesn’t sound like is success and why should it? Leukemia is a nasty form of cancer that automatically shuts our brains down to logic out of self-preservation! The word just screams fear and that is too bad really, because if we stand back and educate ourselves we learn important facts such as, according to the Honor Society of Nursing, success rates over time have been on the rise.
“Leukemia is a serious illness that is in the top ten of cancer-related deaths in the United States. It is worth noting that successful treatment rates have increased four-fold since the 1960s. At the beginning of that decade, only 14 percent of people survived for five years after diagnosis. By 2005, that percentage had increased to 54 percent. Nevertheless, in 2009 leukemia claimed the lives of over 21,000 people, with the highest number of deaths among males with chronic lymphoblastic leukemia.”
Now I know that doesn’t look like a positive or particularly sunny report, but really it is great news! From 14 percent to 54 percent is superb!
SEER or Surveillance, Epidemiology and End Results program of the National Cancer Institute has a more up to date statistic. From 2004-2010 57.2 percent of those who contracted Leukemia lived longer than 5 years from time of remission! OUTSTANDING!
According to the statistics a majority of patients who don’t survive are male in conjunction with the numbers being skewed with children under 15 and elderly adults 60+. As you can see even though these numbers constitute the passing or loss of loved ones to this terrible form of cancer the numbers in regards to our specific case just keep getting better! Positive thinking so let’s form a plan!

Now remember from earlier stories there are 4 main types of Leukemia
AMLAcute Myeloid Leukemia
ALLAcute Lymphocytic Leukemia
CLLChronic Lymphocytic Leukemia
CMLChronic Myeloid Leukemia

Jacy has AML
Acute myeloid leukemia (AML), also known as acute myelogenous leukemia, acute myeloblastic leukemia, acute granulocytic leukemia or acute nonlymphocytic leukemia is a fast-growing form of cancer of the blood and bone marrow.
AML is the most common type of acute leukemia. It occurs when the bone marrow begins to make blasts, cells that have not yet completely matured. These blasts normally develop into white blood cells. However, in AML, these cells do not develop and are unable to ward off infections.
In AML, the bone marrow may also make abnormal red blood cells and platelets. The number of these abnormal cells increases rapidly, and the abnormal (leukemia) cells begin to crowd out the normal white blood cells, red blood cells and platelets that the body needs.
One of the main things that differentiate AML from the other main forms of leukemia is that it has eight different subtypes, which are based on the cell that the leukemia developed from. The types of acute myelogenous leukemia include:
• Myeloblastic (M0) – on special analysis
• Myeloblastic (M1) – without maturation
• Myeloblastic (M2) – with maturation
• Promyeloctic (M3)
• Myelomonocytic (M4)
• Monocytic (M5)
• Erythroleukemia (M6)
• Megakaryocytic (M7)
Acute myeloid leukemia treatment options
Treatment for AML may include chemotherapy, radiation therapy, stem cell transplant and/or immunotherapy. Your integrated team of leukemia experts will answer your questions and recommend treatment options based on your unique diagnosis and needs.
A common chemotherapy treatment for AML begins with induction chemotherapy, in which a combination of drugs is used to destroy as many leukemia cells as possible and bring blood counts to normal. This is followed by consolidation chemotherapy, to destroy any remaining leukemia cells that cannot be seen in the blood or bone marrow.
If cells continue to survive or regenerate within the blood stream another round of consolidation therapy is repeated leading to the possibility of a Bone Marrow Transplant.

This is where we are with Jacy. She will be receiving a Bone Marrow Transplant.
I will cover the Bone Marrow Transplant in depth after our meeting with the BMTT (Bone Marrow Transplant Team) on Monday.
Jacy’s doctor continues to remind us most statistics are up to 4 years old and Leukemia success rates are skyrocketing! She also reminds us not to overly scour the internet as all the news reads grim and can become overwhelming.
I hope this information has helped anyone who has been curious to our plight. When you see my postings or run into me in person and are wondering how I am doing, just know this. Yes I am tired, very tired. Taking care of my wife is an honor; I love her more than anything in the world and will move mountains to insure she is cured from this disease. Adding to all my regular duties and hers as well is beginning to take a toll. But I am positive, we are very positive, my spirits are high, I cannot allow myself to become reactive and negative. If there is anybody in this whole wide world who can single-handedly kick cancers ass it is my wife! If you have met my wife then you know all of this to be true.
So we move forward together as we should through life; Positive, Proactive, with nothing but success and the future of this family on our minds.

images-18

Pythagorean Theorem=Boobs????

Over the years my wife and I have spent countless hours helping our children to succeed through both word and deed.

It takes no shortage of creativity, knowledge, a sense of humor and occasionally some good old-fashioned ass kicking to solidly seat things into our children’s thick know it all skulls.

A week ago a new low had been reached in our household, the bottom if you will. All was going reasonably well, homework becoming finalized before an upcoming work week, and yes I can hear a collaborative parental moan now: why wasn’t the homework done Friday night? No excuses, no answer other than it is just the way we roll here at the BCR (Black Cloud Ranch) if it isn’t last minute well then it wasn’t worth doing!

One of our boys, oh hell why beat around the bush; it was the fourteen year old! Anyways he just doesn’t seem to grasp the importance of Algebra! Seriously Algebra! Algebra is the very basis for all math we will NEVER EVER USE AGAIN IN OUR ENTIRE LIVES!!! It might as well be stinking cursive! Who the bloody hell uses cursive or ever thought cursive was so freaking imperative? Isn’t Cursive like the Beta video of language expression? Oh sure I have seen many hybrid versions, you know a mix of block lettering, plain print and cursive. But really in the end it is as useful as a chocolate tea-pot!

Algebra was the very bane of my existence as a freshman in high school, and it appears to be a genetic learning disorder! Yet Jake has one glaring ace in his pocket for which he refuses to take advantage that I never had at my disposal! His mother teaches math! I know right? Mom teaches math! HELLLLOOOOOOO????? You say you don’t understand math, ask your mother politely for assistance and well, 1+1=uh an easy freaking A! But no, Jake stands before his mother, arms crossed as though he was in the center of a Law and Order episode awaiting his lawyer! This boy, this hard-headed, rodeo driven boy, has been given a free ride for way too long based upon his dimples and charm, yet at home his mother and I see the poop thrower from three years of age. His dimples purchase no currency at the parental store of effort and trust. Mom continues teaching, Jake continues fighting the process. My teeth are grinding and my inner voice hears our beloved dentist God Bless her soul telling me to let it go before irreparable damage is done!

Finally after many witty and not so witty exchanges take place mom has hit the wall, this lad has more excuses for why he cannot learn the Pythagorean Theorem than a desert has sand! Who doesn’t understand the relation of lengths in three sides of any right triangle! Right? RIGHT! Ah Duh!!!! (Ok truth be told I didn’t know what it was either until this fight, but hey enough about my adult ignorance!) Yet a no learning wall is up, affixed, complete with eye rolls, heavy sighs, and the occasional slack-jawed look of stupidity.

This entire process of enlightenment and denial was finally broken when my wife, teacher of equations and mentor with wit, creator of interesting theory and conclusions nonchalantly threw out a reference as to the design of her latest mathematical problem looking a tad bit like boobs! Yes you heard me right BOOBS! Brought forward in that casual oh look what I accidentally drew they resemble BOOBS, kinda way! Every teen boys dream! Men and women alike can agree that BOOBS are pretty freaking cool! Right? Hey I won’t lie, I looked! She said BOOBS for Christ’s sake!!! But instead of a chuckle, juvenile laugh or smirk our sense of humors, no matter how imperfect for the moment (seemingly appropriate I might add) were greeted with teenage loaded snide sarcasm and cynicism!

NICE! Now I am not referencing “NICE” in relation too, eyebrows wiggling, crooked grin, hey there look at that or creepy stalker nice; oh nooooo. This was a thoroughly disgusted, grossed out, want to vomit because my mom referenced a girls private parts “nice”.

What the hell! Its boob’s son, no matter how big or small all girls have them! Even some men! How in the hell can you treat it as though it is a dirty word? BOOOOOOOBBBBBSSSSSSS! See rolls off the tongue! Remember when we had the sex education talk and we made you say PENIS, PENIS, PENIS- VAGINA, VAGINA, VAGINA? You thought that was a freaking riot! Red cheeks and all! So what gives? Wait is this because you think we are automatically referring to you moms boobs? Well heaven forbid your mom, a WOMAN has boobs! Or is it because you cannot stand looking at boobs in front of your mom? Well then we have done something wrong if you are ashamed of the female body and all its glorious shapes, curves and dimensions in front of another woman! What is it? No son of mine is going to ramble on with some form of weird embarrassment over a hand drawn set of circles that look conspicuously enough like a set of boobs! (+)(+)

Then it dawned on us, he saw two circles, we saw two circles, he still remained steadfast in his attempt to thwart any assistance given by his mother, his mother remained steadfast in breaking down that wall. Hence forth two circles that once were nothing more than an equal equation in a math problem became the nucleus for an excuse. By acting as though we had stained his little eyes, burned an unwanted image into his brain, leaving him to die upon the sword of our humor amidst an assumed embarrassment. He believed homework time would be over, a byproduct of our apologies for such inappropriate behavior on our parts. Crying at the table, head in our hands, relished to failure as parents for our poor lack of judgment, he could leave the table thusly going about his evening bypassing another painful night of math while feeling as though he finally got the upper hand!

Hmmmm in retrospect, quick thinking young grasshopper! I am impressed at how fast you grabbed ahold of an opportunity to exploit a situation hoping for instant benefit and gratification… In many instances this quick thinking may have brought forward a prosperous outcome. This would not be one of them!

BOOBS, BOOBS, BOOBS (+)(+) Do you see them???? BOOBS, BOOBS, BOOBS!!!!!

Now do your damn homework!

 

 

Every minute of every second of every day…….

 

I have not written in a while and for that I apologize. Today while thinking about my children, watching the news and looking into the eyes of some of our youth. This came to me. I don’t know what it means, but once I started typing I could not stop.

Every minute of every second of every day, we grow older. Life moves before us at an astonishing rate, faster than our minds are able to fully comprehend. In reality we stand frozen facing the hourglass of life, witnessing what appears as agonizing seconds, thunderous ticking of a tock, movement that seems to stand still as life revolves at a pace that is not to our liking and yet we breathe.

Breathing an absurdity that is our arrogance. For as we breathe we continue to expire and yet no reality of decay meets comprehension. It is within our egotistic nature to face the hands of time and laugh. Laugh through our young mouths as we expire, laugh with our condescending young minds as we inhale, laugh and laugh some more, for we fear not what may lay ahead when youth is our only guide. We fear not what lies ahead when youth is our only means, we fear not what lies ahead for we have never known otherwise.

Every minute of every second of every day we are older, we are wiser, and once age has gripped us tightly we slowly become irrelevant. The youth of this world hears not what we say, they hear not what we have to offer, and they fear not the repercussion of blind foolishness. Though we have learned through experience, though we know from pain, though we still struggle with suffering, we have mentally surrendered to the tick tock, we stand brave faced into the hands of time ignoring what we could never have known and yet we are to be considered by youthful brigades as obsolete.

Breathing in we struggle with ignorance of youth along with an hypocrisy that is born of our own. For through inspiration knowledge falls away, sloughing from the skin of an aged arm, what little remains unused, thrown to the wind by the deafness of youth. Exhalation of life reveals that our future is of our own making; its remnants left from advice unheard throughout our journey of youth. Elders ignored, a blind eye turned to the very history we were scorned for not abiding.

The world, our future, our children’s future can never be realized until the hand of youth joins with the strength of age. Youthful creativity meeting elderly knowledge, young love and passion mixed with aged temperance, wide-eyed exuberance with sometimes narrow but skilled guidance. One melded with another, not two separate living beings fighting for space and time to no real conclusion.

Every minute of every second of every day we grow older, and unless we understand a world will always turn, a day will turn to-night and then to-day again and soon what came from nothing will return to nothing. There will never be a unified progression.

We all leave this world with only what we chose to share.

I choose to share love, wisdom, peace and tolerance for all. Some days are harder than others, the fight for tolerance on all levels is tough, but I have been guided by many great people who imparted wisdom that remains heard though they are gone. Hopefully my children or the youth, will understand, listen and realize that one day they too will be older, they must share, understand and guide others.

For every minute of every second of every day will soon be over.

What else do I have to leave behind, what else do we all have to leave behind but love?

 

imagesCAK713X4