Tag: cancer

How was your day?

theycallmebetty7 Comments

frustrated

0750 my gear has been placed on the engine, I am Acting Captain today and we have a shift filled with misfits as many are out on the fire line. The day feels good, my spirits are high, and we have a great group of guys working this morning! 

This day is also an important one for many as we are selectively heading to city hall. Many have tested for an open Captains position and one by one we will head over to partake in the interview process. The interview process is the most important in this three stage testing procedure as its weight bears 50% of your overall score. I feel pretty good considering the weight upon my shoulders as of late. I enjoy the interview process more than the testing side because it gives each individual an opportunity to express themselves beyond a cut and dried, yes or no, pick A,B,or C type answer. It really does put everyone on an even playing field and with the wealth of incredible talent our small department holds it makes for an exciting 30 minutes in front of three of your peers.

0830 I am in the shower, Class A suit laid upon my bed, shoes shined, a quick shave and we will be on our way. My engine is staffed with two other awesome candidates so we are traveling together. Our second due is fully staffed and prepared to handle all calls as we work our way through the process. Of course this is a necessity for as I previously eluded 1/3 our department is currently out of county working the Rocky fire. 

The phone rings, I am mid shave, they will call back. It rings again and keeps ringing; SHIT! This must be important, there’s something wrong with the kids is what comes to mind first! I am sure someone is fighting about having to take orders from one sibling or another, or someone doesn’t want to do chores! Wet and unable to see very well without my glasses, the outline of my wife’s picture is visible through the steam as it continues to ring! My heart races….. She never repeat calls me unless it is REALLY important. I answer the phone and tentatively say: hello?

A sound of desperation rolls into my ears through gasping breaths, sobbing and fear. “I don’t want to die, they are putting me on experimental drugs, I don’t want to die here! I want to come home now, can I please, please come home now, I cannot die here James; I can’t!!! I feel too good, I am walking, we go outside, why am I getting sicker? I don’t feel sicker? You can’t let me die here! I just really want to come home now! Please, can I please come home!!!!!

(Heavy, heavy sobbing)

I don’t know what to say. That is right, the man who has something to say about anything and everything to a point you just want to tell me to shut my damn mouth! Has nothing to say.

Tears fill my eyes.

After a few still moments my brain kicks into gear. I tell her I don’t know why this is happening, that she will win this battle, and that she is the strongest woman I know. (Hell truth be told she is also stronger than most men I know.)

She retorts with; I just don’t understand James, this isn’t fair!

And she is right. It is not fair, and I will never understand why this could happen to anyone, let alone a woman who has given so much too so many. I know our lives are not tallied up in a score allowing us some form of greater peace upon leaving this earth. But as one who believes in Karma, as one who believes we are all put on this earth for a reason, it makes absolutely no sense. No sense at all..

A few moments go by and she tells me she just needed to hear my voice, she needed to hear me tell her everything would be ok. She asks how my interview went to which I somberly reply; it is in a half an hour.

In hindsight, I should have lied and just told her it went fine.

It took a few minutes of calming her down after spiraling into what a bad wife she thought she was for calling and laying all that on me before an interview. I calmly told her not to worry, it would be alright and I would be there soon. She made me promise to go through with the interview. I was ready to leave. It was the hardest thing to promise her I would stay, but she made it very clear this interview was not just about me, but about our whole family. Twenty years happily given to my career, if an advancement were to come it’s not just my advancement, it is the entire families advancement as they too have sacrificed for all that time. Once she was calm and re-energized knowing my love and commitment to her, we hung up our phones.

Walking back towards my dorm was the longest mile. Everyone seated in the day room, some talking about the upcoming interviews others mentioning fires while some were partaking in a little busting of chops. I made no eye contact, prayed no one could see my swollen, red face and quietly I slipped into my room closing the door without so much as a squeak.

Sitting on my bed, I slowly raised up my wet towel, covered my face and screamed as loud as I could. Then I cried, and cried some more until it became sobbing.

Now I am no psychology genius, although you need to have a little ability in that arena when it comes to this job and dealing with the various personalities we encounter. But I am going to guess that sob was more than just a phone call. Fighting migraines daily brought on by all this stress over the last year and a half finally came to a head and in that moment. Undignified, snot filled, blubbering moment. Trying my hardest to get it under control before I was discovered was to no avail.

One of many wonderful, caring co-workers that surround me on a daily basis walked in, not because he heard something, but because we share a dorm room and the minute he saw me, he quietly closed the door, came over and without a word sat by my side, put his arm around me and just hugged me. It brings tears to my eyes writing this because in a moment when some would try to do so much more, he knew more was not what I needed. What I needed was hug. A simple human response, showing you care enough about someone to let them go through what they are going through but with the silent strength of support in the form of a simple hug.

I pulled myself together, got dressed and went to my interview. Before walking inside I took a deep breath and tried my very hardest under the circumstances. It was all a blur as before I knew it, the boys had covered my spot on the engine and off to Stanford I went.

Jacy was never happier than the moment I walked through her hospital room door! She couldn’t see me, but once I said; Hi honey, she smiled that beautiful smile and there I stayed, by her side until late in the evening.

To understand without question the lord has a plan for you may be a hard pill to swallow at times. You are not supposed know why things are the way they are, but determine what the message is and how you can learn, grow and provide to others from what you have experienced. Good, bad or otherwise it is a journey designed for you and you alone.

I am not happy about this road we are currently on, I never will be, but I do know when this is over we will have one of hell of a story to share with others and maybe that is the point.

Jacys current status: Jacy currently has GVHD in her abdomen which is exactly where you don’t want it to take hold. What that means is as her new cells are battling to find a foot hold in her body they have a tendency to destroy things, such as tissue, muscle, linings etc.. This is why the first sign of GVHD is a rash. Jacy’s rash covers her entire body. It eventually blisters with dead skin cells, sloughs away leaving new baby like skin behind. (Stars pay thousands for a treatment to give them new baby skin) What you hope for is this is as far as it goes and that you develop chronic GVHD, where a rash or a form of shingles only re-appears every now and again. Jacy has developed acute GVHD, which is life threatening; although treatable it is fully dependent upon her body’s ability to interact with a variety of drugs to counteract the GVHD. None have worked and she has reached the limits for steriods. She weighs around 129 pounds, her legs are the size of my biceps, she can barely see as the underside of her eyelids are sloughing away leaving her eyes swollen and blurred. She still has a full body rash and of course her abdomen is now affecting leaving her with uncontrollable diarrhea. The fear with it in her abdomen is the cells are attacking her intestines which doesn’t allow for her to process food. What this mean is no matter how much she is craving a cheeseburger she must be on a liquid diet because her body cannot digest the solid food appropriately. Even on a liquid diet her body is using way more calories than it is able to obtain, leading to anorexia and possible kidney failure.

We are in a last ditch effort to turn things around by placing her on experimental drugs hoping to reverse these effects before it is too late. The experimental drug they are prescribing is Ruxolitinb or Jakafi. Look it up it is an interesting read.

This morning she feels great! The diarrhea has stalled as she didn’t need to go all night. That is a good sign! She is fighting with every fiber of her body as only she knows how and told me two weeks! Two weeks is her goal to get to her dads hell or high water! She believes the new drug will work, putting an end to all this nonsense! There is definitely something to be said about a continued positive attitude.

Many will say I am giving away too much information, that there should be more privacy when it comes to this matter. But the reason I share all of this is not just so our friends, family and extended family (which is what I consider every single person who is praying along with us to be) can be informed, but to put a realistic face on Leukemia. Not just the success stories and depressing losses but what is actually happening in between to everyone involved! It is a dreadful disease that hurts family after family and without knowledge along with sharing our experiences we will never grow to help others living through the very same hell.

To everyone who is assisting our family in some form or another. Thank you from the bottom of my heart.

To everyone who is praying for our family; may God bless you all!

Feel the warmth

theycallmebetty4 Comments

sun

Today the sun shone upon her face as I witnessed how its warmth made her feel. We take for granted our daily lives and how simple everyday processes are there, waiting for us, unobtrusive. Like knowing your right leg will follow your left, or when you itch, a dominant hand will scratch without so much as a second thought. So goes our lives, the sun will rise, the sun will set, followed by the moon. Yet we never think about what if we no longer knew the sun was there?

Every day for millions that fire in the sky is too damn hot! Every day for millions it shines over and through clouds leaving them to damn cold. We take it all for granted. One thing I have noticed since this journey began is how much I miss living near the coast. The valley is a wonderful place, but driving back and forth to Palo-Alto I can see the majesty that is fog rolling in over the foothills, that cool breeze proceed its arrival letting you know the fog is almost there, never having to hear the steady drone of an air conditioning unit running for 24 hours on occasion. I grew up in a charming little town, filled with dairy’s and cattle ranches several miles inland from a tip of the bay. Sonoma was an awesome place to grow up. Every night you could watch the fog roll in over the valley walls, rolling out in the morning to leave a cool, crisp moistness for all to enjoy. As humans we complained it was too cold, or too hot during the day and man just once I wish that fog would wait until later to roll in making everything wet!

I have been away too long, I am not sure if it’s my age, the fact I recognize we complain way to much or seeing life through my wife’s eyes as of late has changed my perspective? But I appreciate everything this earth has to offer us as human beings.

So I rambled, where was I? Oh yes, What if?

Watching my wife slowly step ever so carefully down a long and busy hallway, eyes fixated on a double set of doors roughly 50 yards away. The light shining through those doors indicating they are in fact a righteous pathway towards freedom. My focus is solely on making it there without her feeling so tired she can longer fathom making an extra step, thusly cutting our journey short. Ensuring her pathway is clear as we traverse this major artery of the complex. My worries are there, but I am trying my best to not let them show. She has only completed a few loops around the quad over the last week or so; her small world of circular entrapment. Today’s journey for her has become the equivalent of walking into the next town.

Double gowned, IV stand in tow running on battery power, a hat to protect her new skin from the dreaded UV rays and of course sporting the ever so stylish Darth Vader mask, keeping any air she breaths clean of all harmful organisms. We crawl, people staring, some smiling, others with a “good job” look upon their faces and of course the trip wouldn’t be complete without those who just don’t know what to do when they see her walking towards them. To look away, make eye contact and freeze, stare mortified or the just plain look of pity. Oh well it really isn’t their fault so what can you do?

We make it to the door and as I open it, the sweetest, most perfectly timed light, warm breeze hits our faces. For me it feels great! But for her, well this is where I was going with all this rambling from the beginning, it is heaven. This woman who hasn’t felt a breeze, natural warm air, cold air, fog, or glaring heat for 44 days is slightly blinded by the brightness and in one deep breath, relaxed and happy.

I witnessed how the warmth made her feel! We didn’t make it to Stanford’s glorious, well-manicured fountain area another 25 yards away, but we did find a nice bench, under a tree and there we sat, beneath a beautiful mixture of sun, clouds with a hint of fog just off the horizon. We listened to the fountain, and all the wonderful ambient background noise. Light and movement were a neural overload for my wife but she enjoyed every minute! We talked as if we were on a date; that is if the date was near a hospital and my date was heavily sedated. (No rufie jokes please) She sat with her eyes closed for a bit, feeling the suns warmth, the light breeze, free from the beeping machines in her room, while quietly wondering when she was going home.fountain

We had a wheel chair available for the trip back, but she refused, her stubborn Cuban side firing back up! So after twenty minutes or so, Jacy said it was time and we slowly, carefully made our way back down that long busy hallway, into the BMT unit and back to her little room with a window.

Once inside the BMT unit it was heartwarming as almost every nurse cheered her onward, congratulating her for making the journey, inspiring her to be stronger, to become healthier in her recovery. I cannot say enough about these special people who work inside this wing of the hospital. We all know and I have said it before; my wife could make friends with the hardest of people. Yet everywhere we went, even in the hallway outside the BMT wing, nurses or Stanford employees were coming by to wish her well. They all know my wife by name, they all have a smile on their face and they show just how much they care. It is inspirational.

Tomorrow is a new day, no matter what has happened today, good, bad, or in-between remember this, there is always someone out there doing a little worse than you. Be their inspiration.

The sun still shines on your face, you still have the freedom to be where you want to be and when you want to be there, you have the ability to make the very most out of your day, every day.

So please take a moment and be thankful you can still feel the warmth.

hobbes

Gonna pump you up!

theycallmebetty4 Comments

hanz and franz

We are going to PUMP YOU UP!!!

Fighting Leukemia is a long hard battle not for the faint of heart. These men and women struggle with more pain, both mental and physical than anyone could imagine. Their continued inner conflict seem to come from the heart because no person wants to go through something like this! Once you read all the information you then have questions, doubts and wonder why exactly someone would put themselves through endless hours of physical and mental highs and lows. But they selflessly do.

Believe me, these patients don’t do it for themselves! I have listened to a few survivors now, both in conversation and as part of this wonderful network slowly being formed through contact both on this page and other media sources. Each of them all believe saying yes to life was the right thing to do, the responsible thing to do; having treatment was a choice and they all believe they’ve made the right choice. But??

Of the four I am currently chatting with online, each one slips into a sentence these words: I am not sure I will do it again. Or the ONLY reason I went through it all was for my family.

Think about that for a moment. I have been faced with serious choices over the last 20 years in regards to others, and I always tried my hardest to make a decision based on training and what I would want someone to do for my loved one. Never in my wildest dreams did I ever think; what if it was me? What if I needed treatment and without that treatment I may perish?

These loving, kind, vibrant individuals faced with an option, treatment with a 50/50 chance or no treatment and let nature take its course eventually leaving behind loving family and friends. It boggles my mind.

I am overwhelming thankful for the choice my wife made. She was rocky for a minute, but it was only a minute and then her normal, lets kick this things ass mentality shifted into overdrive. I am grateful the people I have met who have survived not just Leukemia but all forms of cancer made that choice letting modern medicine have a shot! I am thankful for where we are in the advancement of treatments for all kinds of cancers, because 20 years ago the outcome would have been very different.

These people are my heroes, I am honored to know them, to talk with them and hear the love, kindness and respect they hold for a new found life. Some are completely different than before, nothing bothers them, and they no longer get upset over the little stuff, waiting for each and every day to greet them with the sunrise. Others hold a new respect for their surroundings, knowing if they hadn’t made that choice how much different things would be today. All of them are grateful for their families, loved ones and friends.

Each one of them is open and honest about their struggles, willing to share feelings both positive and negative, hoping I see in the end it will all be ok. Writing about Leukemia as it decimates a loved one is filled with negatives, it just cannot be helped. But there are positives and these people prove that to be so!

To each and every person battling to live, for your family, your friends, your loved ones, I love you all, I will always share your stories of inspiration to hopefully help another father, husband, friend such as myself. You all make me proud to be who I am, what I am and where I am right now with this life.

With that, I believe it is time we update the wife’s condition.

Wednesday, things were very rough! Jacy still couldn’t walk, pain everywhere throughout her lower extremities. The fevers had returned with vengeance, and vomiting appeared to be an every 30 minute abdominal workout. The doctors pulled her Hickman line for fear of infection and placed a Picc line in its place. She was still heavy on fluids, and any effort to urinate (which was a must every 10-15 minutes) was met with burning pain and small abdominal spasms. When I left her on Wednesday night because I was headed home due to a large fire near our jurisdiction, she was knocked out from pain meds.

Friday I snuck over in the afternoon and Jacy had been moved into the cardiac unit. Fevers were running high without rescinding, she was still vomiting a lot, and her lungs weren’t exchanging oxygen well so O2 saturation levels were very low. She was also diagnosed with HHV6-B

HHV-6B primary infection is the cause of the common childhood illness exanthema subitum (also known as roseola infantum or sixth disease). Additionally, HHV-6B reactivation is common in transplant recipients, which can cause several clinical manifestations such as encephalitis, bone marrow suppression and pneumonitis.[5]

Sooooo cloth gowns, masks and gloves for everyone!!! SCARYYYYYYYY!!!!!

I know you are asking yourselves; hey! Didn’t the title say “we are going to pump you up”? This has all been kind of a downer!

Well MY PEEPS! Word on the street is Jacy was slipped a little steroid cocktail and BAM! Instantly feeling better! That’s right within a day her fevers had subsided and by the end of the next day she could walk the quad without pain!!!! Whoop whoop!

roids

Jacy was moved from the cardiac unit yesterday and once again is blessed to have her very own room. (A luxury I might add). The doctors ran a bunch of tests today which included a colonoscopy and she still has plenty of sores in her throat along with a full body rash. Doctors have stated they are trying their hardest to get everything under control so she may be released to outpatient care hopefully by the weekend!! Way to go Steroids!!!!

Getting her out of there and into the redwood lined, mountainous retreat that is her father’s place will be a spirit builder for certain.

So after a very long storm the first bit of sunlight comes cracking through the clouds and hopefully we will feel the warmth of her smile once again.

When angels cry

theycallmebetty7 Comments

 

angel 2

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

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

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

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

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

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

I don’t hear her cry, I feel it.

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

I feel it deeper.

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

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

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

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

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

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

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

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

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

How “we” are doing.

theycallmebetty3 Comments

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

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

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

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

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

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

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

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

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

images

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

theycallmebetty6 Comments

stay positiive

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

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

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

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

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

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

Then I met a Gary (name changed for privacy)

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

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

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

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

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

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

You see God always has other plans.

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

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

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

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

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

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

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

charlie brown

A Transplant update.

theycallmebetty10 Comments

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

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

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

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

What are we struggling with right now?

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

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

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

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

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

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

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

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

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

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What is life?

theycallmebetty5 Comments

What is life?

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

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

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

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

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

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

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

You are the definition of life…..

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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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The final countdown

theycallmebetty4 Comments

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

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

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

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

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

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

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

more to come…..

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