Category: Families

A Transplant update.

theycallmebetty10 Comments

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

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

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

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

What are we struggling with right now?

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

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

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

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

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

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

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

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

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

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Promises

theycallmebetty12 Comments

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

And you would be correct, for they are…

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

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

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

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

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

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

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

I am praying all the time….

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

I promise……….

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A Mystery is afoot!

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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?

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Today just sucked…

theycallmebetty1 Comment

Watching someone you love in pain, brings no greater torment within the soul.

There are times in life when feeling absolutely powerless is a step up from the darkened depths your heart is traveling. Seeing my wife emerge from the doctor’s office today, I expected a curt; fuck that hurt! (yeah every now and again the surly farm girl comes out) Or I am so tired of these gosh darn biopsy’s! Then we grumble a little about her elderly shuffle, a result of having someone gnaw on her hip bone with a needle and make our way slowly to the car.

But today, today was a knife to the heart! She emerged, spoke my name and instantly I knew something was wrong. Her voice cracking, lip quivering, and then tears. Tears streaming down her face as she informed me her biopsy couldn’t be completed because of severe pain.  After several if not close to a dozen or so biopsy’s, I am pretty sure her pelvic bone is done with this shit! Having taken the appropriate pre-meds prior to our arrival, then a dose or two of lidocaine, followed up with a few more doses of lidocaine, followed up with the maximum amount of lidocaine prescribed for a woman her size.  It became very clear to her and her doctor this just wasn’t going to happen.

It also was an awakening in that Jacy’s body’s had enough for the time being. Not good timing as her biggest fear for the moment centers on the Leukemia’s progression. We need to know what her cell counts are to create a plan of action.  Putting off another few days until a different course can be plotted only exasperates her anxiety.  The despair in her voice, the emotion on her face combined with an inability to do anything (something I am not good at handling) and my heart was breaking for the woman I love.

Walking slowly to the car; all I could think about was my love for her and wishing it was me, not her. Helping her into our car, my chest was hurting, she cried, took a deep breath then cried some more.  It was a quiet, somber ride home. Helping her upstairs she gently laid upon our bed and quietly slept.  Beat up, bruised but resting peacefully.

The appointment will be rescheduled so Jacy can be sedated through an I.V. to complete this procedure. It will still suck but at least she will be knocked out. Hopefully all this will happen later this week.

Today was just one of those days you close your eyes, say a little prayer to calm the nerves and rely on faith.

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Each day is a gift…

theycallmebetty4 Comments

Every day we travel through a world filled with the unknown. Our existence centered on being over here at a certain time, over there later in the day, a meeting with friends, or hustling constantly checking our electronic organizers. Our lives intertwined within the movements of a clock or the expectations of others.

How many times have we sat down at the end of an evening to utter these words; where did the day go? How many days in a row before we recognize the week is over and we mumble the exact same sentiment; where did the week go? The insanity of it can be mind-boggling as we continue placing an emphasis on agendas. Lost is the importance of our life, what it means to us in conjunction with the gift of having another day. Forgetting about finding a moment during each one of those days that resonates, becomes a memory or a topic for conversation. Real conversation too, not a text or Facebook posting.

George Strait has a song that always helps me slow down and remember that each day is a gift.

Just walked down the street to the coffee shop

Had to take a break

I’ve been by her side 18 hours straight

Saw a flower growing in the middle of the sidewalk, pushing up through the concrete

Like it was planted right there for me to see

The flashing lights, the honking horns

All seems to fade away, but in the shadow of the hospital at 5:08

I saw God today..

I’ve been to church, I’ve read the book, I know he’s here but I don’t look, near as often as I should

His fingerprints are everywhere, I just look down and stop and stare,

Open my eyes and then I swear,

I saw God today…..

And so it goes.

With everything happening in our life, it can become easy to be angry. Today I had a wonderful conversation with a friend about all that is happening in my life. I wonder why I am not angry. It is easy to just say you are not angry when you really should be; placing the classic stoic face on this bump in the road instead. But I just can’t find any anger inside to dwell upon. God has given me so much, God has given us, my wife and family so very much. In a life where blame is the first bony finger pointed out of malice. Who would I blame? Who could I blame? Why would I waste the time and energy? It is what it is, even if that “is” sucks!

There is a plan for all of us. Whether you believe in a God, no God, a higher power or some form of spiritual awakening. There is a plan. I have always believed our lives have some purpose, some meaning and it is up to us to find what that meaning is. We can travel through life as I explained above, with blinders on and no recollection of any real purpose or need, never finding or fulfilling moments of remembrance and that is fine, if that is all you want out of life. To bad really, since you only get one shot at it. But for me, I know through hard work, an even temper, leaving my eyes wide open to all possibilities the plan will reveal itself. Being angry at the cards dealt does no one any good. Play those cards instead and believe victory is yours.

So we move forward with a positive attitude. All will be fine, we will rise above and walk away from this emotional roller coaster ride with our heads held high. We will hold hands through old age, cherishing our children, our grandchildren and laugh. Laugh at all the memories, laugh at all the little moments, laugh at beating the odds, beating so much sorrow that can arise from these situations, laugh and thank God for all that we continue to have placed before us..

Today I …

Saw a horse nuzzling a newborn foal

Saw my children laughing at nothing, and everything all at once

Watched as my son rode through a practice really well

Stared at my mare grazing in a pasture of green surrounded by other mares ready to foal just as she is ready to foal. The miracle of birth waiting to arrive.

Rode one of my favorite horses and it brought peace and contentment to a tired soul

Visited with friends celebrating a birthday, laughing, joking and having a really good time

Watched my son’s friend look like he wanted to ride a horse, while being too shy to ask

Talked with my daughter after her game of softball, listening to her tell me about it filled my heart with joy.

Played Legos with my youngest, creating cars to battle an imagery foe.

Hugged my wife, kissed her beautiful bald head and melted as she smiled at me

Feel blessed for everything I have.

Sitting here staring at my computer, looking at the mountain range behind my house I know;

I saw God today.

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A little stronger one day at a time.

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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…..

There is light..

theycallmebettyLeave a comment

Home…

Home is where the heart is.. Piny the elder

Love begins by taking care of the closest ones, the ones at home.. Mother Teresa

The ache for home lives in all of us, the safe place where we can go as we are and not be questioned… Maya Angelou

Imagine if you will, life has thrown you a curve, well ok, more like life has thrown you a curve and you forgot not only your uniform, ball cap, mitt, cleats and cup but you weren’t even looking in the general direction as this curve, this speeding 90 miles an hour curve ball hits you square in the head! (Sorry I love baseball, my blog, my analogy)

Now just as you get up, dust yourself off in preparation for righting this horrific wrong, this lack of observation on the field; coach comes out and says your contracts been cancelled. You no longer have a home. Years of familiarity, friendships, camaraderie, and your family (the team) gone with a simple decision. All done while following well written rules allowing others to decide your future.

That is how it seemed yesterday when we began discussing care for Jacy.  You see, after a bone marrow or Allogenic Transplant, there is five or so days still confined to a hospital room but as soon as your white cells begin to act appropriately you are released for out-patient care.  No big deal right? Wrong..

We live over two hours away and learned that all patients must live within a one hour maximum radius to ensure rapid response from the appropriate physicians should a dire medical emergency arise. Also there would be numerous doctors appointments that could only be held at Stanford.  So with high traffic flows and population density this limited our choices for a recovery lair. Stanford has housing available near campus, but we had been warned those are hardest of all domiciles to acquire.  Our next best location for Stanford provided housing was in and around the San Jose area.  Although tempting, something didn’t feel right in my wife’s heart about abandoning her family and San Jose just seemed so far away from Stanford and home. If you need to be confined unwillingly then right next to campus seemed the most prudent course of action.

Either way three months away from home, away from her children and farm. None of it felt right and it was eating her alive.  As we listened to contractual stipulations ensuring all healthcare recipients were in full understanding of terms and agreements, it felt so wrong to have such a momentous life shift bring further pain through separation.

All the way home she felt as though her life was being ripped away.  She couldn’t grasp the reality of having to live so far away.  No matter where she ended up for those three months her sister would be with her as she needed 24 hour care.  But just the premise of her children being so far away while she stayed in a foreign place with surroundings unfamiliar was eating her alive.

It was bothering me as well.  Although I fully understood the reasoning’s behind these decisions we had no control over, I just wanted to make things easier. Not just for her, but for our children.

And then yesterday it hit me, her dads house. He has an apartment off the main house that could be kept clean, her sister would then still be home, her family would be surrounding her, and we could come visit in a place familiar to our children. A place where they could see their mom, love on their mom and then go off to play with cousins. A place where her rehab was surrounded by peaceful redwoods and stunning views of the silicon valley!  It was the perfect set-up! After talking about it with her family everyone was on board!!! Our only glitch! In the paperwork defining areas of acceptance, the Saratoga mountain range was excluded.  A case may have to be fought and fought hard I pondered! For you see travel time from her dads house to Stanford is 35 minutes, there is minimal traffic from the route we take and that alone makes it closer than San Jose!

Every family members fingers remained crossed as Jacy called the social worker today in hopes of pleading a case.  A case built around what her entire family felt was best for the patient, their sister, daughter, mother and wife. Total family care, a place that is like a second home, and peace of mind for all involved.  Cant we please overlook the Saratoga mountain range clause? PLEASE?????

The answer; YES!!!!!

That is right our first ray of light through this medical tunnel of darkness! No argument, no pandering, just a good old-fashioned yes! Of course this after the social worker mapped it ensuring all was above-board! We heard Yes!!! I almost leapt from my seat upon hearing the news! She was ecstatic, I was relieved, her fathers fears eased and an entire family able to give this woman we love all the support she needs!

Our first hurdle down and it was a psychologically big one!

Tomorrow brings another day and something, anything to look forward too.

Leukemia- handling it all…

theycallmebetty3 Comments

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
AML–Acute Myeloid Leukemia
ALL–Acute Lymphocytic Leukemia
CLL–Chronic Lymphocytic Leukemia
CML–Chronic 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.

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Eyes open, heart beating……

theycallmebetty4 Comments

When you look at your significant other what or who do you see?

Our daily existence grinds, wears and changes who we think we are, what we think we see, and how our minds perceive ourselves and those around us. Life has a way of giving you little moments to reset a thought process, unwind a feeling or empower a minute. Yet many times our ego, or self involvement will not allow us to see, and therefore we fail to recognize a second in time where we could reset our thoughts, our direction.

Last night after finishing laundry and making lunch for my high schooler, my sorry butt finally hit the hay around 11:00pm. Taking a deep breath as I assume we all do when our tired bones hit the mattress my thoughts were about nothing more than settling into another episode of the Sopranos as I have taken up the series from season one. Clicking all the right buttons and waiting for the screen on my iPad to flicker alive my eyes gazed across the sheets to my wife. My tired heavy sad face casts upon her as she lay, peacefully sleeping, her face swollen, puffy, like she went ten rounds with a prize-fighter only to get stung by a swarm of bees on the way out of the ring. Insult to injury.

She was smiling.

That is right, the whole world is crashing down around her, Leukemia is making her its bitch and she is smiling in her sleep. Now I know she is in misery and there is no earthly explanation for this insane facial distortion. The hives, itching, redness ruling her every moment for the last two days has been nothing short of maddening. Round after round of Benadryl, two pills every four hours resulting in an inability to stay awake. Her days just melding one into another with no real relief on the horizon. Yet she smiles slightly.

Staring intently I wonder what she is thinking about in her dreams? Is it September and her doctors telling her she is cured once again? Is she hugging her children without fear of catching a common cold? Is she riding her giant draft horse, hair grown back long and flowing, blowing in the breeze? Is she relishing in proving me wrong, about something, anything? Is she sitting on a beach holding my hand drinking beer laughing the way she does when I do something stupid? Does she know something I dont know?

At the very moment my eyes locked on her face my heart was overcome with joy. Why? Because she is mine.  She keeps apologizing to me for this blip in our lives and I tell her she needs not apologize, it is what it is and we will beat Leukemia. She wont beat it alone, we will beat it together. This woman, who is tougher than hell, meaner than a ferret when cornered and will drive me crazy in an argument with this uncanny ability to twist my words into a mess of spaghetti that even I can’t understand, is mine all mine. This thing called marriage inadvertently has highs and lows, struggles and triumphs.  She has given me so much, teaching me to be a better man, a good father and showing me the importance of constantly giving to others.

She tells me she hates the way she looks. No hair, no muscle tone, and she keeps losing weight. All part of the process I say. The funny thing is, I dont see it. When she smiles, it warms me, when she hugs me my heart still beats fast, when she holds my hand and walks with me, I feel like if anyone even thinks about looking at her funny it is all over for them.

So as I look at her, while she lays there sleeping, I quietly thank her. Our marriage will not be an easy one, there is quite a road ahead for us to climb.  I could sit here and complain about all the bad things that have happened in my life, cry about the hard times (and sometimes I do, because well you need to get things off your chest) that never seem to end from my narrowed perception. I look at her with all she is going through and there she lays, smiling.  Life gave me a moment to recognize, I did and and it seems that even with this disease our life together is pretty damn great.

Maybe that is why she is smiling?

When I look at my significant other, what do I see?

I dont see Leukemia

I see Love…….

Leukemia still sucks and sucks and sucks some more…

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The days have come and gone like the wind that currently howls over our house at this very moment. Hard and fast air lets out then slow, easy almost comforting in a way it rolls back around.

Leukemia is a strange, strange beast. This form of cancer takes over your blood, choking the very life-sustaining cellular composition that travels within your veins. Chemotherapy or five specific chemicals to be more precise, drip into your system neutralizing this mutation as it grows. After five or so days strapped to an I.V. stand you are monitored for a few more days while blood is taken daily to register the effect this deadly poison does on your system. Then as your white cell counts drop (the main target) to almost nothing leaving you susceptible to even the most timid of colds, germs or traveling organisms you are sent home from this hospital incarceration to rest, relax and well, basically begin to feel as though you are dying.

But wait there’s more!

Blood, glorious blood, my feeling on this after watching my wife decline into a pale white almost vampirish state is you begin to crave this gooey red substance. For you see without almost daily transfusions at first, your blood becomes nothing more than an empty, nutrition less liquid that can barely carry oxygen to the brain.  Chemo-drugs continue to kill everything within its juicy red make up. No white cells, struggling red cells, no life.  Transfusions bring new platelets (Platelets, also called “thrombocytes”, are blood cells whose function (along with the coagulation factors) is to stop bleeding.) and blood. Without transfusions, these chemo drugs would have essentially done their job, killing off all white blood cells, leaving you a deathly shade of white, unable to fight infection and terrified to bump even the slightest object for fear of bleeding to death. No energy to walk, no energy to breathe, no energy to live.

The next few weeks after the first therapy session are spent going back and forth to the hospital. Blood draw at 8am, test results by 9-930 then either another day of sleeping due to a lack of energy or a glorious blood transfusion.  Now it sounds simple enough doesn’t it? Blood draw everyday and like having your car run low on fuel, just pop in and fill er’ up! I havent seen the bill yet, but I am pretty sure blood is more than $2.99 a gallon.

But what happens if you are allergic to these transfusions? Well our Miss Jacy is just that, (way to always be an overachiever huh?). So now instead of an easy-peasy morning or plug and play as it were, we stroll in to our own private room (thanks to the really killer, or shall I say bad-ass nurses at Kaiser who really dig my always smiling wife) and the count down begins.

Zyrtec to fight the histamine reaction needs to be on board prior to any fluids

Benydryl to cover an additional reaction that happens sometime after the initial infusion

A bag or two of blood to redden things up a bit! Oxygen rules!!!

Oh and a bag of platelets… Now these are not just any platelets either mind you, no no! These are carefully washed, plasma free platelets (Platelet Light I prefer to call it) made just for Jacy to minimize any allergic reactions. Oh and beware they need to be used quickly for they only have a shelf life of 4 hours!

Funny story the other day my poor wife was in the infusion clinic and hospital from 0930-11:30. Why? Because the delivery service from San Francisco a meer one hour and forty minutes away just couldn’t seem to get her platelets to her in under four hours! Hmmm seems to me that might be a tad bit important, huh? The response for such tardiness? Stuck in traffic. I call balderdash. But that’s neither here nor there .

So now she is all topped off, tune-up finished, low and behold no wheel chair needed to exit the hospital, no shortness of breath detected upon exertion and she feels as though she could run a marathon! Blood, Blood, amazing blood. Since blood is red, I believe I shall start referring to my wife as Ferrari! Sexy sleek thing that she is.

The long and the short of it? This is where we are right now in this whole process. There is much more to come, including a wonderful all-inclusive trip to Stanford University a bit later on.  I promise to tell you all about it! I hear the place is all the rave!

I wonder if I could get a blood transfusion after a weekend of rodeo? Hmmmmm???