I can’t…

This morning I sat down, stared at the screen and thought; it has been awhile, I need to write. Hmm? What will I write about today? Maybe something funny, or pertaining to recently turning 50? I certainly do not wish to write anything sad. After reading a few of my last postings, I found my writings to be a tad whiney, or heavy. People certainly must be tired of the same old story.

Then as paragraph after paragraph littered the screen only to be erased by the mighty stroke of a delete button it came to pass I was trying too hard. So I asked myself; Self, why haven’t you written in a while?

And that’s where this posting truly began.

Betty, why haven’t you been writing?

The answer comes from a conversation openly held in the day room of a busy firehouse. Sitting in my recliner listening to others and their crazy busy lives. Camping trips, play dates with friends for themselves and their children. Fantastic vacations or simple evenings at home surrounded by family. Listening to life moving on as it should.

What was my answer?

Because I can’t…

Every time I think about writing lately, I stare at the screen and from the darkest bowels of my inner thinking machine a voice rises above all conscious thought and whispers; you can’t.

Getting up in the morning is a struggle. Oh I received 6-8 hours of sleep, yet the moment I must rise a fight with my inner voice arises. I can’t is all I hear. I may wander over to ensure the kids are up but then against my old daily routine I just climb back into bed, pull the covers over my head and pretend I’m not there because inside I just can’t see myself doing another day. I get over it and most days turn out pretty good after running into some of my favorite parents, co-workers and friends. But it is becoming an increasingly difficult struggle to get past step one of the day.

There is a mile long list of repairs and maintenance around our house. I wrote the list, and continually add to the list, yet I cannot seem to accomplish the list. I may get one or two of the easy things done, but then I panic, feel sick, and want to sit down near Jacy and veg-out. Excuses like needing to pick up the kids in an hour or man I am really tired all come to the forefront. But in the end, I just can’t seem to see myself getting anything done. I am sure it is no different with any other busy father, but for some reason that feeling is more burdensome than ever before.

Ever cry at sappy movies? Apparently the water works now turn on for just about anything! Ok watching the SPCA commercial where Sara McLaughlin is singing while sad eyed, unadoptable, abused animals are trapped at the shelter doesn’t count. You have to be pretty heartless to not squeeze a little water out of those orbital areas of yours after watching puppies cry. I found myself tearing up explaining a reality show the other day where the daughter of the contestant showed up to tell him he won! Kids doing well on Americas got talent, winning a round of American Ninja Warrior, or watching the friend’s episode where Ross and Rachel finally kiss!! Yep they all bring on the rain! WTF???? Hell Tommy Boy was on the other day and I was crying at the passing of Big Tom Callahan!!! I just can’t keep crying at everything it is wearing me out!

My fuse is much shorter and I can’t seem to control it or keep that Irish/Italian temper from rearing its ugly head. Poor Jake has been bearing the brunt lately. Now some of it rightly deserved but in hind sight more than a few times have gone over the line with things said that cannot be taken back. He always smiles at my apologies and says it ok he forgives me but all I can think about is deep inside I am probably hurting him, hurting his ability to grow and handle stressful situations. I am afraid one day I’ll snap over something stupid and he will have had enough. Irreversible damage complete. Then what? Oh well I can’t seem to wrap my mind around the parental complexities of this issue right now because I will start crying again and no one needs to see that here at work.

Everything seems impossible. From completing my monthly budget, paying bills, changing a light bulb or even just being something, anything. It all seems too much right now.

As I am writing this I just realized my heart rate has doubled. I figure it’s my fight or flight response to even mentioning any of this in combination with feelings trapped inside that I can neither recognize nor willingly let out.

I keep using the analogy that I am a bottle filling with sand. Burdensome, gritty, heavy sand. This sand has reached the top and either I am able to upset the bottle, pouring out this heavy, gritty, burdensome property carefully into a container of contentment or it will overflow, and we all know what happens when sand pours upon us against our will. We end up carrying it home, it’s stuck in the crack of our ass and it takes a month of vacuuming to get it out of the car!

Our life has been incredibly hard. It remains that way. Watching my wife suffer daily is taking a toll on me. Of course I have no right to complain in comparison to the toll it is taking on her. It has been a long, long road.

Jacy has had several hospital stays of late. The other day they put a port back in to help with her current treatment which feels like a giant set back. The steroids have doubled the size of her face and left her weaker than normal. The other day while at a friend’s house doing her very best to live life as normal as possible she fell. Yep, a simple walk down a 10 yard path from patio to arena and her legs just quit! She ended up with a bloody, black and blue eye as her sunglasses tore open the fragile flesh under her eye. She feels consistent insult to injury on a daily basis.

My wife has decided to live life, to go to rodeos, make trips to the store, and do her best to become the mom that she was pre-BMT. She doesn’t have the energy or the strength, but she does have the resiliency or ballsy moxie to do exactly what she wants, family or doctors be damned! I admire her on many levels. I do my best to let her accomplish what she wishes within reason, while at the same time worrying if she is doing more harm than good? Once again though, who am I to say? I don’t currently have the body of an elderly woman, no strength, no vision, with pain surging throughout my entire body 24/7. I don’t need to consume 23 meds, three times a day while also partaking in breathing treatments (4 different kinds) wearing oxygen and doing my best to keep myself fed when I either don’t wish to eat at all or only crave crap food of no real substance? I may be her husband, the only person she can truly confide in, the one who promised in sickness and health, till death do us part. Yes that may buy me some vote, but if it was me? If it was me this was all happening too, would I have the strength to make it another day for my kids the way she does every single day? Would I wake up every morning, take my meds, and then do my best to smile while making school lunches even though I really can’t see? Could I sit in a chair for most of the day either passed out from the very same medications or wide awake scanning the internet feeling like shit because I couldn’t go outside with my horses? Could I kiss my kids goodnight with confidence that tomorrow will be a better day like she does? She is angry, she is sad, she is happy, she is resentful, she is hopeful, she still wishes every day for one more day, one more week, one more month, and one more year. Another camping trip or the ability to take a family cruise. She is amazing.

Could I be like her?

I can’t………………………..


At the end of the day, whiny or not, dark and gloomy be damned. I decided to write these blog postings journaling my wife so others who may be feeling the same way would know it is ok. It is part of this weird, sometimes unforgiving magical mystery tour we are on and you are not alone. To those currently in treatment. This may be the way your caretaker or spouse is feeling and to know they love you, care about you and will do anything to make your life, your situation easier for you. We will never leave your side, so don’t be afraid to be who you want to be, use what strength you have to enjoy whatever moment you wish to enjoy and know the whole time we will be standing right by your side. Even though right now I feel as though “I can’t” when it comes to many things, I will always believe in the “can” most of us hold deep inside. I also believe that for the most part all people are good caring human beings and no matter the situation we all rise to the occasion.

Ok, I’m done. I can’t write anymore….





365 days

One year-365 days

The day before yesterday I awoke to my phone buzzing incessantly on my leg. I had traveled back to the firehouse for an emergency recall as emergency units were fighting a stubborn structure fire and additional manpower was needed for daily operations. After changing into my uniform, checking the operations board, determining who went where and why. A moment came where I dropped into a chair to catch a minute while enjoying the air-conditioning. It is the last thing I remember. That is until my phone started buzzing upon my leg.

Answering it, my wife started talking and I quickly realized I had no idea what she was saying. Not only did I have no idea what she was saying but I didn’t know where I was, who I was, or why I was sitting in a chair inside the firehouse. I panicked and thought shit something is wrong, why is she calling? She is at the hospital what has happened? Is it bad news? Is she ok and once again, HOW THE HELL DID I END UP AT WORK!!! Had I been there for a couple a days? Was this my shift? CRAP!!! I was lost..

The entire time my inner self is freaking the hell out, my wife is simply asking me when I am coming home for dinner? When I didn’t answer she would simply ask me again.

This morning when I awoke to head off to work, I awoke alone. Seeing no one there, I panicked for a second, took a breath, cleared my eyes then remembered as I have reminded myself on multiple occasions she wasn’t in the hospital. Odds are she is probably downstairs in her recliner after another long, horrible, sleepless night filled with coughing and pain. Instead watching Netflix with her headset on, and most likely snuggled up in a blanket trying her best to let me sleep.

A year ago Jacy received a bone marrow transplant. Today, according to BMT lore is her new birthday. A new birthday is given to every transplant patient upon receiving their transplant. This transplant saved her life. We are, and will be forever grateful for such a generous, selfless gift given without hesitation by a person we have never met. Modern medicine is amazing and I find myself in awe at what these treatments have afforded our family.

But it has not come without a cost.

I wake up disoriented and confused all the time! Exhaustion is a standard of living for me. I can’t fall asleep until after midnight. I fill my time doing laundry, cleaning house or simply watching television while she lays beside me. But even then I am watching carefully, listening to her breathe, judging her every movement. I do my best by allowing her the freedom to make decisions on her own in regards to her day, energy exertion and tasks she wishes to complete on her own. Never overstepping my bounds but asserting myself when I think she may have done too much or is planning to take on more than she can handle. Of course who am I to say what she can, or can’t handle? This is Jacy after all and she is going to tell me what she can or cannot do. Then when things don’t go as planned I just smile a sly smile and without saying; “I told you so”, help her get to where she needs to be. Most of my days are spent working outside for a while, then coming inside to make sure she is surviving and comfortable; certainly being inside also has to do with the current heat spell we are experiencing; trying my best to get the hard stuff done before it becomes too hot. In the morning I generally awaken at first light, toss and turn, trying to sleep just a little longer which may or may not get me to 0630. Then its coffee with the wife and my day begins.

It is as though w have Bone Marrow Transplant PTSD. I panic at anything in regards to her health, position, status, whereabouts, etc.. It is hard to love someone with all your heart, be their caregiver, take care of children, work, run a household and ranch all while trying to remember it is all going to be ok and you should probably take a moment or two for yourself.

The phone calls, updates, a year of hearing it’s all going to be fine then 5 days later you are signing DNR paperwork. The next weeks prognosis is good, but a few days later she is back in ICU. She is going to live, she is going to die. She is a miracle from GOD, she praying to GOD. She is kissing her children, she is praying for one more day with them. Doctors patting you on the back and smiling. Doctors patting you on the back while they sit you down to explain some very serious complications. The amazing amount of time you have, alone in your car, traveling 2-3 hours one way, hoping to spend more than a couple hours with her awake, knowing it is not her fault as heavy medication kept her from any form of alertness.

For a year I have watched the very same medications saving her life wither her body away to nothing. Taking away muscle and tone she worked so hard for so long to achieve. Leaving skin and bone in its aftermath, tearing away at her self-esteem. I have watched as hair has fallen off, skin has flaked away leaving lesions, blotching and discoloration covering her body. I have held her as impaired vision causes her pain, balance issues and nausea.

She cries a little each time we go back to Stanford, afraid some nurse or doctor will admit her. She lives in constant fear that if she does get sick she is doomed. She has mini panic attacks when calling her doctor or making an appointment for the same reasons. The slightest sniffle or cough leads to worry as a fever or discolored sputum brings doubt as to her overall health.

A year has gone by and our children are no longer the same. Learning about life and hardship, struggle, pain, sickness and survival. They will never look at a hospital or doctor’s office the same way again. Our youngest feels that if you go to a hospital the odds of coming home right away are very slim. They no longer know the mother who rode horses, or played sports, gardened and ran the perimeter of our property. No a year has gone and with it all expectations of normalcy.

But I am not writing this to be a downer, because although it has been an extremely difficult year and continues to bring struggles to our family, it has also been of year of immense growth.

365 days of love, caring and a town that never quit supporting our family. Never did I have to worry about whether my children would have a meal, or a place to go hang out, friends to play with, or a parent to help them. My oldest learned what it meant to be a BIG brother. Not just their brother, but one who cares for them, keeps them safe and ensures they stick to their schedule. We are pretty sure they also ruined him for ever having children.

Those children who can’t play soccer, go camping or ride horses and bicycles with their mom anymore have instead learned the importance in taking care of another human being. They have also through helpful guidance from myself and their older brother (as mentioned above) learned how to take care of themselves. Has it been perfect? NO! Have they all made mistakes, some larger than others? YES! Have I screwed up numerous times trying my best to parent from afar while at Stanford? HELL YES! But after this bout of family struggle in their lives I have no doubt our children will grow into fine adults who will undoubtedly help others along the way. Something (compassion) a parent wishes for from the time their children are born. Do our children want things to be the way they were before? YEP, but they also know we cannot go backwards and though it has been challenging they are ready for whatever lays ahead happy with the knowledge mom survived and mom is home.


Those medications her and I despise are keeping her alive and with each day comes another opportunity to interact with not only her family, her children, but her friends as well. She still feels as though there is work here on this planet for her to do and although each day taking 23 medications three times a day is a struggle. It is a struggle worth the price. I remember her saying one time that if GOD would grant her the ability to survive she would be content just watching her children grow from the comfort of her easy chair. We all know that isn’t enough for our Jacy and it really doesn’t matter what those medications have done to her outer appearance. The inside is still the magnanimous, charismatic, hilarious, moody, determined, intelligent, caring, loving, the woman we all know. That my friends is all that matters. A teacher once asked me; what will you do when your looks are gone? I can say without a doubt that if we have the love of family, friends and most of all ourselves. Then looks never really mattered anyways did they?

As far as constantly being exhausted, worrying about everything from my wife, to our ranch, long term finances, our children’s welfare, work and beyond? It has been a reality check, and a very long exhausting two years. From first being diagnosed with Leukemia to her having the Bone Marrow Transplant. I am tired, so very tired, I am overweight and I don’t feel all that great, my inner confidence is waning and some days I feel as though I am drowning. But I also know this is exactly where I am supposed to be. I married an incredible woman, God gave me a second chance at life by introducing us. It is within our nature as human beings to complain and as much as I despise complaining I have done it a time or two, or three, ok maybe half a dozen, yet I wouldn’t trade anything. From the moment we met we both knew we were meant to be together. We both heard and felt a higher power formulating a plan while drawing us together. When we married, she began working to make me a better person, not because she had to, but because you just naturally become one once you are around her. Trust me, I didn’t always like it, we sometimes fought over it as I raged against change. But without her, I am not sure I would be who I am today and for that I am thankful and she deserves all the love and devotion I have to give. So a little exhaustion is fine, some residual hospital PTSD is ok and at some point I am sure I will stop feeling exhausted or falling asleep the moment my body quits moving.

But in the end, as tired as I am, through all the hell our family has been through, thanks to God, great friends and family along with Jacy’s incredible will power, she is still here on her new birthday, and for that I will be forever grateful.





Oh how the wheels turn…

I knew this time was different when we pulled into the entryway. A dozen or so cars all waiting to either move or be moved, patiently we sat in silence. As we made our way to the front of the line you could feel the tension. Slowly crawling to a halt, she simply looked at me, opened the door and quietly muttered; I’ll see you in a bit, I love you.

Jacy hadn’t been feeling good. She always has a cough, has had one since January 2 when she was released from Stanford and sent home. It is associated with GvHD but as of late it has gotten stronger and raspier. Several nights she spent coughing, tossing and turning, not only to the cough but a stomach ache, headache and over all exhaustion. The type of exhaustion that actually leaves you wide awake, praying for sleep, any sleep to come and come quickly. Each rising of the sun signaled defeat for her and mentally it was taking its toll.

Then came Monday night.

Monday she awoke with a fever. A fever is fine, it means her new immune system is trying its very hardest to work. A fever over 100.4 is bad! It signals her system is about to become inundated, unable to handle whatever is causing her grief. She hovered all night at 99.8/99.9 worrying it would tip the scales against her in which case we head straight to Stanford, do not pass go, do not collect $200.00 dollars! (Sorry for the monopoly reference)

It was a very long night.

It took quite a bit of hounding only because my wife is super stubborn but I finally convinced her to call her doctor. Jacy’s stubbornness is not born out of neglect for her own care but instead out of fear! Fear she will walk through those large glass doors at Stanford and be held prisoner for another 8 months. She has bad dreams where she is back and they won’t let her leave. Crying, sobbing, and pleading to just let her go home. This of course is no reflection on the care given at Stanford! Quite the contrary, there is no other place she would rather be when in need. The staff is amazing and we still cannot say enough about the nursing care. It is derived from an imprisonment away from life and her family for which she nor anyone I suppose could ever have imagined! 8 months is an eternity.

Once she put down the phone I knew instantly we were headed back. They promised it was just to check her out but as that little voice in the back of your head tells you; there is more to it than that!

The next day somberly we loaded into the car. Jacy tried her hardest not to cry as we crept out of the driveway. Looking back as our place grew smaller she withdrew, finding something on the radio so as to not talk or focus on the unknown. It was the longest 2 ½ hour ride ever.

I’ll see you in a bit, I love you.

The door closed, I pulled away heading towards the parking structure two blocks away. Walking back I kept telling myself it was going to be an easy fix, they would give her some medication and send us home. (Of course life experience told me different, it was just easier to play dumb and lie to myself.) No stay, no hospital and no more fear raging deep inside. Apparently I have Stanford PTSD for as I walked closer to the building my chest tightened up, my heart rate accelerated and it became hard to breath. Why? Because deep down inside I knew she was going to stay.

Once inside I found her room, testing had already begun. Doing my best to make her laugh, we once again found the Stanford staff to be exceptional. Killing time while we waited I turned on the SF Giants game, they were facing the Atlanta Braves, it was a nice distraction as it was the first time in forever we both were able to sit in the same room and watch the game together.

After a couple of hours, with a chest X-ray under our belt it became apparent they were going to admit her to the hospital. Jacy’s oxygen saturation levels were extremely low which explained her need to sleep for what seemed like 20 hours a day. This news was of course devastating. Jacy kept insisting we could go home and come back the next day, but there was no way they were going to let us travel with her sat numbers so low. We also had another issue. Where to put her. Stanford was at maximum capacity, as in no beds available! The suggestion came down to place her in the Emergency room until a bed could open up. This was not going to happen! The consensus was she needed an isolation room as to limit her exposure to any germs or viruses, yet placing her in this (ER) contaminated place was the answer? Uh NO!

Repeatedly her doctor reaffirmed she would be moved as soon as possible. Jacy would look at me and just as quickly I would reaffirm my stance which was indeed our stance of NO. We would drive home, take the two hour risk of low O2 numbers until she could be hooked up to her own oxygen machine over being left in the ER for who knows how long. The doctor very politely took a stronger position trying to explain all the associated risks for which we already knew, but we held our ground. Isolation room or we go home. What she didn’t know because I am not one of those people is; because of my job I already knew the risks, knew the low percentage of something dire actually happening and had one ace in the whole. There (an exaggeration) are like 92 fire houses between here and home that at any moment I could pull into and receive instant care for any breathing emergency that might arise. But I was extremely confident considering her presentation that would not be an issue.

Jacy’s nurse came in 30 minutes later to have her verbally state her stance or refusal to be sent to the ER for which we chuckled as you could plainly see he was working on a plan. There just seemed to be a gleam in his eye that showed he was up to something good! And he was! Long story short, our nurse pulled some strings, made numerous phone calls and worked it so after the ITC (Infusion Treatment Center) was closed Jacy could stay in her little room until an isolation room opened up in the main hospital. He stayed behind on his own, after everyone had left to ensure she didn’t get moved to the ER. He was incredibly caring and amazing. Once again the staff of Stanford inspires me.

We arrived at noon and now 10 hours later, Jacy was in her own room, terrified but understanding of the situation. She had already received her first doses of medication and was getting ready to start another round. The treatments were to be every 8 hours for a couple days. When I walked out the door to head home at 10:30pm I was both relieved and sad. Relieved she would finally get the care she needed to breath properly again. Relieved she was being examined for any other complications or hidden problems that may arrive, relieved that she was in the very best of care, relieved that so many people care about my amazing wife. Sad that we were here. Even though I knew when we walked out in January we would not do so unscathed. Sad that I was walking these halls once again, alone. Sad that I was driving home once again, alone. Terrified once again of the unknown and sad that our children were seeing mom disappear once again to be left alone.

Thankfully, we are a tight family and we have faith to keep us strong.


UPDATE: Just received the phone call!!!! I am headed to pick her up right now. She is coming home! Her voice sounds great! Her lungs sound clear! Prayers, good vibes, powerful thoughts of positive energy all worked yet again!!! Another obstacle hurdled!!!

6/4/2016 @ 11:00 am






Can you hear me now?

In my twenties I never thought much about life and what it held for me. Every day the sun rose I tried my hardest to earn the respect of those around me. At that age you just want to be heard. Your ideas, thoughts, designs, you just want to be equal with those around you. To show the world that you are not just another dumb kid. Of course not helping matters much my looks were far younger than my age, therefor anything that came from my mouth was treated with kid gloves, quite literally.

Some life changes came and into my thirties a family was started, a career blossoming and again I yearned to be heard. The problem? I was the older guy as most in my profession started young and had already promoted to mid-level or even officer ranks. During that time I learned about fatherhood, gained some maturity and just when things started looking my way I also learned a lot about death. It was a challenging time and still no one was listening.

Welcoming my forties, our family grew, my inner child faded away as motorcycles, boats and fishing tournaments slid to the wayside for coaching baseball, and raising/riding horses. Trips to Haiti for humanitarian reason filled our summers, helping us grow as human beings and rodeo soon dominated our lives. For once in a really long time things felt as though they would look up, our family, especially myself could or would find contentment in life. Then came Leukemia, cancer, and a Bone Marrow Transplant. A very sick wife was struggling hard, fighting for survival and once again I found myself yearning to be heard.

This time it was different.

You see before, I longed to be taken seriously for whatever I may have learned along the way. Wishing those who I surrounded myself with would just listen, understand that maybe just once I actually did know something and could be thought of as equal or even a peer to someone new.

Over time I stopped yearning to be heard but instead chose to listen. Listening is one of the most important traits we can learn as a human being. Listening allows you the opportunity to feel empathy, compassion and love. Three of the best human characteristics we could possibly have or share with others. So I listened, and listened some more and I learned to love by not saying a thing. To empathize with those around me and show great compassion to those less fortunate than I. Listening gave me an opportunity to engage my brain instead of my mouth. Insecurity feeds a rapid fire mouth while silence often times shows great strength.

Now as I am but a few months away from my fifties I am yearning to be heard again.

My wife is struggling with all that has happened to her. She has been a pillar of strength for so many including myself. There is not a day or moment within the day I do not think about her. Alone, in her chair, or upstairs in bed, wondering, asking God why this happened to her. She has survived so much and yet she feels as though she has lost just as much as she gained. A woman who thrived in our barn, was an angel to so many children within a classroom setting and my best friend is still patiently waiting for things to get better. We are one year since chemo and one month away from her transplant. We are three weeks away from when she left the house for what was supposed to be at its worst no more than four months. It was eight months instead of struggling to survive. She is trying her hardest, but most days leave her incredibly exhausted and unable to move. She may have two good days and four really rough days. Her body is fighting her at every turn. She looks up and smiles at me but we’ve been together for 15 years and I can always tell when there is something hiding behind that smile. Some things she just can’t say, but my heart knows what they are because I have listened. 

So to my wife I hope you can hear me because this is what I have to say.

I love you.

I have loved you since they very moment we kissed. It was a confusing time, a scary moment but an inner sense told me it was supposed to be.

There is something about your personality that is mesmerizing. Like staring into an oasis after a long hot journey across the sand. You are that safe comfortable place so needed after such long travels.

You haven’t changed; your caring shines from the inside of your soul. I have yet to meet anyone who doesn’t instantly feel comfortable around you.

You are the devil when you are angry. But if you weren’t my strong personality would roll right over you and that wouldn’t be good for anyone.

I could never imagine a day without you. Just like chocolate

We have four super fantastic pain in the ass children who love you! They are frustrating and amazing all at the same time. They also have no idea just how serious ALL of this has been and because of that they can be a bit selfish at times. But remember, they love you. They show it every day by not doing their chores, arguing with you about homework and treating you like its days of old where you would pick up after them.

I am scared to death but refuse to show it to you. You have enough to deal with emotionally other than dealing with my fears. This whole thing is so unnerving and yet watching you fight so hard, how could I ever tell you I am scared as well.

Quit worrying about what GvHD has done to your outside appearance. I know its difficult, and I understand you miss your old body but; I love you, the person who is you, it doesn’t matter to me what you think you look like because when I look into your eyes and the smile lines under those eyes relax for just a moment, you are there, whole, kind, caring, soft, understanding and as beautiful as always. I only see you..

I don’t know what the future holds for us, for you. I will not pretend I have the answers anymore. This whole thing sucks, it is painful, emotional and at times beyond comprehension. But I do know this; There is no one on this earth that I would rather be with. I am thankful every day that you chose me for a spouse. Yes it is hard taking care of everything without my partner in crime but I got it. I am doing the best that I can and the only reason I am doing so well is because of my love for you and my faith that God is watching and has a plan.

So please my dear wife ease your worried mind, have faith, look into my eyes and know I will always be by your side, helping you any way I can; Loving you and cherishing every moment we are together. Lean on me all you need, and rest when ever you want.

For every day is a glorious gift from God.

. .


The Journey

Thursday we made our bi-weekly or so, journey to Stanford. These required visits are needed so doctors may track Jacy’s constant state of GvHD.  Whether it be dealing with a pulmonary function test, her intestinal tract, eyeballs, skin or simply drawing blood to determine antibody needs we always arrive nervous, expecting the worst but hoping for the best as in serious signs of improvement. These appointments can range from down and dirty, leaving us with more time on the road than actually inside any facilities, to eternally trapped on campus with no place to retreat between sessions! Moving from one appointment to another with sometimes more than an hour or two in between visits. We laugh at each other for it has become the only alone time we ever receive and of course nothing is more romantic than swooning surrounded by similarly sick people or holding hands beneath the deep shadow cast from a set of IV pumps inside a sterile chamber. On this particular day Jacy was meeting with her primary Doctor which is always a treat. She loves seeing Dr. Muffly and always comes away feeling as though she just spent time with a friend. But first a 4 hour IV infusion of antibodies to boost her multi layered, still very confused immune system. After that a little round of pulmonary function testing and then it’s back on the road to hash it out with every Bay Area commuter trying their best to get home in under 3 hours. Of course the first hour is fun for me as I play a time honored game started with my son Parker that centers on the Toyota Prius. Much like the road game slug bug only the Prius takes its place. We also play the car spotting game, Tesla, Ferrari, Audi, and Porsche. It is fun driving through a community where the majority of vehicles on the road are green or simply cost more than my house. Ahhhh to have that kind of disposable cash….. We pulled into Stanford’s Cancer center turn around at 10:30 am after a leisurely 3 hour traffic jammed ride when my wife suggested I find something to do other than sit by her side for 4 hours during her infusion. Now normally I would have balked at this absurd suggestion as I have always believed a husbands place is by his wife’s side, no matter what! But today she was right, I needed some Betty time. Time to reflect and be alone. Time for just me with no one needing me for anything. Trapped in the center of Silicon Valley with no excuses to hide behind, that is just what I chose to do and with a kiss, a hearty good luck and I’ll see you in a while, this guy headed out alone.

Where to go, where to go????

I thought about going to the Tesla store but I knew then I would want one and since that type of purchase is nowhere in our future I turned the old faithful 200,000 mile wagon left instead of right. Of course this also eliminated the Ferrari store, the Audi store and who couldn’t pretend car shop without sitting inside a Porsche 911 4S! To dream ah to dream.. First retreat I chose to patron was a little restaurant I have passed a hundred times. A quaint little place nestled in the hills above Palo Alto. A place I have yearned for my world to stop just long enough so I may cross its gastric threshold, yet there never seems to be enough time. Today would be different. When I pulled into the parking lot the first thing to hit me was a smell of ancient redwoods filling my nostrils. Walking up to this small, shake covered hut, heavenly aromas wafted across the open plane. Stepping onto a huge well seated porch I quickly took my place silently amongst some of my favorite people in the whole world. Bikers

That’s right Bikers, masters of the motorized two wheel sleds. Throttle squeezing, leather wearing, Carbon fiber covered, alloy loving, helmet adorning, race pipe thundering, high rev, revving BIKERS! Eating my breakfast a Cheshire cat smile glistened as I listened to each story about the mornings ride, or a previous ride or a tale about someone else’s unbelievably adventurous ride. Tech talk at table two involving power commanders and horsepower. New heads for table fives Harley and a freshly painted fairing to boot! I could almost feel a bike running underneath me! It was good to be back amongst these folks. Gazing across the landscape I recalled many of my bikes from days past. A simple street cruiser, bench seat KZ500, my very first Harley! I could still sense the raw power and throaty noise coming from one of my customs while aching for the sheer arm stretching torque produced by my ZX12R which had quite a few modifications. Each motorcycle reserving a special place in my heart, leaving me smiling, content and hoping I’ll know that feeling again. Yeah, someday day, I’ll be back. After settling up with the waitress I drove down the road a ways to a state park where walking off breakfast sounded like a good idea. Parking the car, walking to the trail head I chose a direction and headed out across this large open field. Working my way along the hillside there arose a bench in the distance. Reaching that bench I couldn’t help but laugh as I read the plaque inlaid upon its top plank. It was quite simply labeled “Bobs Bench”. Taking a seat the view was amazing. I thought to myself somehow dad knows I’m here, sitting on a bench with his name and wondering how he is doing. In return I knew he was looking down upon me, letting me know he’s watching over Jacy. He loved her so, they bantered back and forth and in reality the old man lived for her calling him out for his shortcomings.

Strolling farther down the path it felt as though the weight of my world had left for a bit, a beautiful fern laden path, some ancient trees, and even a few Mountain Lion tracks made this the perfect hike. I lost track of time and before you know it I had traveled 4 miles. It was glorious! Now I will say this, when deciding upon an impromptu adventure, ensure you retain alternate apparel somewhere in your vehicle for just such an occasion, for as I discovered the hard way; Vans are not for hiking! Just saying!

Back at the car I made it three miles down the road when Jacy called to say she was almost finished. Perfect timing. Picking her up some lunch then circling back into the Stanford Cancer Centers turnaround she climbed inside already a bit exhausted. We headed over to the main hospital where we arrived very early for her last appointment, a pulmonary function test. Luckily we didn’t have to wait very long and before we knew it back on the road we were, heading for home.

I thanked my wife for the wonderful morning, and I told her all about the day’s events. She told me about her appointments but before long she was drifting off to sleep. We weren’t 30 minutes into traffic when Jacy’s head nodded its final nod, resting gently towards the door, looking completely tuckered out.

These trips are hard on her and so is the process of recovery. She tires of being exhausted all the time and doesn’t understand why she just isn’t healing or regaining any of her former strength and vitality. Jacy is very thankful to have survived, to have fought as incredibly hard as she did, but the longing to just be normal, to ride horses, to help her kids, to be a teacher again surrounded by children who aren’t hers, but in reality are very much her children has become overwhelming for her at times. It is hard as her husband to see her in pain, to see her struggle, to see her longing for the past. As a man I am a fixer by nature and I can’t fix this, I can’t make it better, I can’t take it from her and make it my own.

The best I can do is support her, listen when she needs an ear, stay quiet when she screams at the ceiling, give advice when she asks for it and when my wife says to go do something on my own. In this case a journey within the monthly journey.  Do it, enjoy it, and thank her for it afterwards for without her coaxing me to do so, I wouldn’t. I would stay right by her side, making sure she is ok and telling her just how special she is to me.

I cant wait until the both of us can sit on Bobs Bench.

bobs bench



Grass glistening under the morning sun I can almost feel a damp chill through the outer liner of my boots. There is so much to do here on the ranch, something I’d taken for granted prior to Leukemia entering our lives. Every day waking to a cup of coffee, a list of projects, horses that need riding and good close friends who share my love for our equestrian lifestyle.

Life was slower, moved more efficiently, our time allotted carefully with separated responsibilities tackled by two active adults. Yes it wasn’t always perfect, there were collisions of schedules and an occasional finger of blame pointed in the others direction for absence of responsibility. We thought; how could life possibly be any busier? Oh how wrong we were.

Today, I have nowhere to be, (a rarity) the list of stacked up chores is overwhelming. None of these written down labor intense segments of self-importance are of any severity in the grand scheme of things. But the sun is out and even sitting here typing now feels like a guilty pleasure for which I should not partake. My wife is asleep. She doesn’t really sleep all that well anymore. Her medications are leaving her on a revolving pattern of slumber that is tiresome to watch. I spend as much time as I can inside the house making sure she is ok. She has so many medications taken daily it blows my mind at her ability to keep track! But she does, and often time after double checking I’ll find she is to the pill in her counts. We have Oxygen tubing running across our bedroom floor as she needs a consistent O2 boost so her saturation levels remain above normal. Feeding her has become difficult as these little pharmaceutical wonders leave her stomach tied into a burning knot most of the time. When she does eat it’s an egg sandwich, just toast or on really brave day’s carrot cake. She is doing well getting up and down the stairs, but prefers and wisely so to have someone with her when she does.

Somedays she stares blankly out the rear window of our little ranch house; to say I wonder what’s on her mind would be a false statement. I know. One doctor telling her to stay inside, another telling her she shouldn’t even be here at the ranch, it is to dangerous, while a third claims the occasional trip across the grounds couldn’t hurt. It’s a conflict of emotion, an experiment in mental strength, a dichotomy filled lifestyle. Does she risk it or watch from the bleachers? Should she enjoy what’s in front of her peering through a “boy in the bubble” perspective or run with abandon into the countryside? There is more, there is always more and when you have stared at four hospital walls for 8 months you pray to the heavens above for more. Once granted you now stare at four household walls and you pray for even more! More time with your children, more time with your husband, more time to be outside with your animals, more, more, more! To many opinions, to many rules, to many drugs, to many trips to the hospital to many restrictions, yet only one life.

Outside the birds are pleased, blue skies above them, food is plentiful below and they sing with glee. Our brood of horses’ knicker and snort at the prospect of roaming green fields. Four dogs have all found places in the sun, soaking up its brilliant heat and not one barn cat remains inside the barn. The air cool and crisp, combined with those warm rays of light makes for a glorious day to be in a right here, right now frame of mind. A solitary moment, to myself, outside with my eyes closed tight selfishly dreaming of the way it used to be, the way it was. A small pebble under a giant blue sky standing here calmly taking it all in, occasionally looking out across our property while absorbing its natural beauty my smile comes on the weight of heavy shoulders as our once normal life has been replaced by these solitary random moments.

I wish there was more…





The road home and transition.

It is official, as of right now, Jacy is home for good! Tuesday we traveled from Stanford to Kaiser then over to Saratoga and when all was said and done, 14 hours had flown by, the car was loaded with all her belongings from the apartment and I had one very tuckered lady on my hands.

Our schedule currently remains the same. Once or twice a week we will continue making a roughly 2 ½ hour trip into Stanford for her doctor’s appointments. These appointments will ensure we are continuing down the right path, juggling a fine line between steroids and immunosuppresses. Blood draws, counts checked, dietary regimen consistently re-examined and of course there remains those damn pesky lungs that refuse to heal! We still are incredibly careful when it comes to her exposures and because of the high risk being at the ranch, she rarely makes it outside for more than a few minutes to enjoy her homestead surroundings.

Jacy’s body has made no real progress, we are in a serious holding pattern. Being in a holding pattern isn’t so bad, her doctors agree as long as she doesn’t slide backwards it will be counted as a win! Unfortunately not making any real progress is weighing heavy on her mind as she sees all of us hustling around taking care of everything. The go getter inside her is screaming to come out and play! But she can’t, she doesn’t have the strength or energy so rest is the order of the day, every day. She does her best to put in some light exercise to stimulate her atrophied muscles in hopes of getting back to normal sooner than later.  So a holding pattern is where we remain, and regardless of her progress after talking with her doctors we all agreed home is where she should be, in her own bed, watching her children, resting. No mother should have to be away from their children and regardless of her condition, just being able to converse with her kids face to face daily is all the medicine she needs.

My wife is constantly telling me she is sorry. For what?? I tell her she has nothing to apologize for but she doesn’t want to hear it. Jacy cannot believe everything I’m able to get done on my own and only wishes to ease some of this burden. To be honest I am exhausted, all the time, and some days am amazed myself how much this completely disorganized fool accomplishes! From sun up to sun down there isn’t a moment away from work that I am not moving. But there are no serious complaints. My wife is alive and that’s all that really matters to me. Making sure everyone else in my family is happy, healthy and participating in life is what’s important to us both and if that means little sleep and running all over this county daily well that just happens to be a side effect of our current condition. But she has nothing to ever feel sorry for, trust me when she is healthy again I will turn over the reins with a giant smile on my face and love in my heart.

Life is what you make of it. I personally have always believed there will be many times life turns on you, piling more and more on top of what you already believe you can handle and it’s what you do during those times that dictates the life you choose to live. It doesn’t mean you always like what’s happening or are even able to find a positive from the situation. Trust me the black cloud following our name has hung around way too damn long! But you can’t just roll up in a ball and quit either. There is always a plan and just because you cannot see the whole picture right now doesn’t mean you should ever think of giving up! I was taught strength comes from within the struggle.

I see couples on FB having drinks, wine tasting with friends, hiking in the mountains or on grand adventures around the globe and jealously sets in for a bit. It is so easy taking for granted just two short years ago that was us! We were shooting selfies at the bar or in the country somewhere on horseback! Snuggling under the moonlight, walking hand in hand in Haiti or simply enjoying dinner out with family! I long for the day she gets irritated while out on an evening walk because I am moving to slow! When I think about how much I would rather be on horse today, I remind myself that Jacy would much rather be anywhere but stuck in bed, with oxygen plumbed to her face and fluids flowing freely into her arm! Sleeping away large sections of the day, brought down through medication like an animal hit by a tranquilizer gun! I remind myself that my most important job in life is her, never taking it personally when she snaps at me exhausted from a long day of medications, travel and doctors, meanwhile cherishing every second she is able to snuggle and hold me, looking in my eyes the way she does filling my heart with love.

This whole process over these last two years has taken so much from her both physically and mentally and I am so grateful having her by my side once again. There is no doubt this will be an amazingly long road to recovery but it doesn’t matter because she is home, her numbers are holding, we have our family, friends, prayer and hopefully a little luck finally shining through that black cloud, chasing it away.

Its been a long road home, but home is good and family is even better..





Nothing crushes a man’s heart or weakens a hardened exterior quicker than watching your wife cry. Witnessing her rapid release of pent up emotion while absorbing ones surroundings with tremor like sobbing there becomes a moment where no perfect words for comforting leaves you helpless at best. Oh a hug will always suffice yet truth be told there really is nothing you can do but watch and stand fast for any request needing fulfillment.

And so went the first ten minutes inside our little farmhouse once Ms. Jacy crossed over its threshold.

She tried her very hardest in keeping it together, after all she had been given a very warm greeting, some would say almost spastic from her dogs, eight months was an eternity for them as well! Of course there were hugs and high fives from her children, then there was the “Welcome Home” sign along with flowers on the deck. But my poor wife was falling apart before my very eyes and all she could manage to utter between gasping breaths was; I never thought I’d see my home again.. I thought I was going to die….

Standing embraced under the dim light of our kitchen bar she continued sobbing while my heart continued hurting. I could say I understand, but I don’t, not really. Yes I have clung tightly to a faithful vigil of spirituality and positive stature, with an occasional doubt creeping in only to become squashed through a refusal of acceptance. Yes I have walked side by side, never wavering, always spending every moment possible next to her witnessing each and every change in her mental and physical status. But to say I fully understand what she is feeling would be a complete falsehood. Only she knows what lies underneath her weary exterior and at this moment it is sheer joy mixed with uncontrolled emotional pain.

The old me in this moment would calmly say; everything is going to be ok (the unknown possibly positive note) and don’t cry, this is a happy moment, you should be happy you’re finally home (the condescending response of unrequited knowledge) along with there, there, there. (Well that’s brilliant huh?)

What I have learned is this was and is going to be a very traumatic experience for my wife for a very long time to come. The pain associated with this process will not just go away. Living with the thought of almost dying along with not knowing for sure how much time she may have left on this planet in conjunction with guilt for being gone from her family, but mostly her children will not evaporate overnight. She is in a great deal of discomfort every day reminding her of all the physical pain she has suffered thus far. Also reminding her daily this journey is a long ways from being over and with multiple appointments and medications filling her every moment there seems to be no end in sight. This experience has taught me allowing her to grieve for her former self is perfectly normal and my place is to simply love her for who she is, the person she has become and the woman I fell in love with because nothing else matters. She has looked at me and wondered out loud why I would still want her, for she no longer looks the way she used too. But what she doesn’t understand is all I see is the woman I married, she is extremely beautiful to me and always will be! I have accepted that if she hurts, I hurt, if she laughs, I laugh, but most of all if she needs an answer or an opinion to always tell her the truth! Never ever sugar coat it with some horrible regurgitated response as if you’d spent one to many hours watching Grey’s Anatomy. She deserves respect and she will receive it.

Once she gathered her breath and dried some tears she asked to go upstairs to our bedroom. This is the task I have feared most for she has not one ounce of muscle left in her legs. Making it up the three stairs of our porch was a bit of a feat. We decide to try so we start slowly and after several small breaks she has made it onto the landing, out of breath, tired but excited to do so on her own. Once in our room she moves quickly to our bed where she quickly lays down and much like a cat upon its favorite pillow, my wife curls up with a supreme look of contentment on her face. She is home.

The next two days go fairly well. Ms. Jacy makes it slowly up and down our stairs, sits in our recliner to remain immersed in our family and is able to gaze upon the property from our large bay windows. She is so happy to be home and by the middle of the second day begins worrying about going back. She wants to stay home.

It’s easy to say the times away will become shorter, but we don’t know, it’s easy to say this if for the best, but really the best for her is to be home with her family. It’s easy to say any number of things with hopes of quelling her fears. But like I said before the truth is always best. So as she tells me she doesn’t want to go, I simply tell her I don’t want you to go either and this sucks! For the simplest fact of the matter is; it does.

Yesterday we loaded up her belongings, she said goodbye to her oldest children and with little ones in tow we headed back to Saratoga. It could be for three days, or two weeks, we just have to learn to be flexible and play it by ear. We couldn’t do any of this without the support of her loving family and we are forever grateful for all of their sacrifices.

I am not sure if she will ever get used to being gone as each day away the fear of something going wrong and her never coming home again is always hovering over her head. I like to think of it as we actually have money (you know like old family money) and Saratoga is the family vacation house! Complete with family members who are always there and are always happy to see us while we vacation and rest in the serene mountains overlooking the Silicon Valley.

As I pulled out of our driveway I could see fear on her face and my heart began to break once more. The thought of leaving her beloved home, children and animals was tearing her apart! By the time we hit the freeway a combination of denial and medication left her fast asleep. Thankfully she slept the whole way and once in the driveway to her dads house she put on a super brave face as we exited the car entering the apartment, her second home. She was happy to be there, but its just not her home. We turned all the heaters on, put her stuff away and slowly strolled over to the main house for a relaxing visit with her family.

Making the drive up to the main road, headed home I felt alone, very alone and empty. I was so happy she was home, so happy to see her each morning, I had forgotten to take inventory of myself.

It was a long sad drive home….




Welcome home Ms. Jacy..

Eight long months Jacy has been away from her home. She has wondered many times if she would ever set foot upon this ground again. A place set deep in her heart where we laid a foundation for family. Many sleepless nights filled with fear, never knowing what’s lingering around the corner in regards to treatment. Waiting, sometimes not so patiently for her life to change, either succumbing to this nasty beast raging inside or feeling a warmth associated with victory shining upon her tired face.

Today all that changes

This morning after a series of appointments inside Stanford’s Medical Center Jacy Mirelle Franceschi will climb into our family mini-van for a two hour drive back home where she will step foot once again firmly on Blue Sky Ranch ground! Jacy has been given a green light to a three day pass! A required experiment to see how she handles being a little further from her Stanford safety net. To date Jacy’s numbers are holding and Stanford is doing their best to slim down her appointment schedule. Jacy still has severe GvHD and needs regular treatment, but there comes a point where it’s better to throw caution to the wind, allowing her to come home for small segments so she may become mentally stronger. Hopefully this will boost her spirits, work a little on some depression and help her body to heal faster. It is and will be a momentous occasion, and at the risk of sounding cliché; to say we are excited is an understatement!

As excited as we ALL are we are also completely terrified! During this last week we have been working on sterilizing a farm house! Let that sink in for a moment, two words that just don’t go together, sterilization and farmhouse. It has been an extremely hard project, and thankfully we have been blessed with some awesome assistance! (Thank you Alisa, Isabelle, Cody, Jake, Jessica and Lynette)The house is clean, neat and smells fantastic! Yet the house is only one issue we must face, from this point forward we must work to keep it hospital clean in combination with watching what we bring into this rickety old structure! This is going to be no easy task. But the alternative is unacceptable.

Here is a little explanation of how things will change. Starting tomorrow whenever a family member goes out to the barn and works horses, show pigs or sheep, they must strip down and shower putting fresh clothes on before coming in contact with Ms. Jacy. Why? Because spores, organisms and germs can enter our beloved family member through her lungs, causing her GvHD to expand sending her on a one way trip back to the hospital! Our dogs must be bathed constantly as to not cross contaminate or carry any spores into her area. Jacy must be protected from the sun at all times, continue with a regimented treatment of 23 medications 3 times a day, two breathing treatments a day and oxygen therapy at night while she sleeps as her saturation levels drop during this period due to GvHD of the lungs. She is still dealing with GvHD in her intestines as well so her diet is being watched as food doesn’t seem to stay with her, leaving her unable to gain any weight. She is also dealing with GvHD of the eyes which leaves her vision incredibly blurry one day with moderate vision the next. Later next week she will have her eyelashes permanently removed hoping to limit damage being done to her corneas. This along with her tear ducts being plugged will hopefully promote more inner moisture and further the healing process. It also means we need to limit the amount of dust and dirt her eyes come in contact with and keep on a regimented medicated eye drop treatment. Oh by the way speaking of dust and dirt, if you have been to my house/ranch then you know we are BIG on recycling products for re-use! Guess what? All the reclaimed concrete that constitutes 3-4 inches of depth on all our drivable areas? (Driveway, pathways, barn circle) well she can’t be exposed to it. The doctors are worried about all those nasty little bugs and germs crawling around in the dust associated with concrete breaking down. Yeah it’s going to be a scary tough go, but those are just some of the things we must consider to keep her healthy.

Ok enough of the scary stuff, now the good stuff.

None of us can wait until she is here! Just the thought of walking onto the property after all this time is more than I can comprehend. Today my wife will finally sit with her family, eat her own food, and laugh as she tries to wear her old clothes (she currently weighs 110). She can sit in her own living room able to look out at the ranch and see all her beloved animals spread across our property. Tonight, she will shower in her own bathroom, watch TV in her own bed, sleep next to her husband and wake up the next day wondering if she has won the “I get to be home” lottery.

Just think about it for a moment. Think about what that would mean to you, if you had traveled the very same path. I think about it all the time, night and day. I think about what she must be feeling, where her head is at right now and how can I make a difference. With that being said; since I know my wife occasionally reads my blog I say this.


8 months ago you headed out of our driveway knowing you would be home in 3-4 months because you were going to conquer this thing called Leukemia like you have conquered everything in your life. With style, class, a smile on your face and the ferocity of a lion! 5 months ago you stay positive but things really weren’t looking so good. Multiple problems and a case of GvHD the likes very few had seen. You began struggling mentally and physically because the odds were stacked against you and it looked as though options were running thin. Four months ago you weren’t any stronger and terms like Power of Attorney and DNR or Do Not Resuscitate orders are being thrown around with a palpable seriousness no one could fully comprehend. You still fight; Scared and tired, some days wanting to throw in the towel yet you continue enduring pain, nausea, poking and prodding with that same patented smile we all love so. Meanwhile the only sleep you receive is either drug induced or through sheer exhaustion from being woken every hour for meds, a B.P., temperature check, physical therapy, Infectious disease consults or doctors just making their rounds. Three months ago a glimmer of light, your body turns around just enough to give everyone some hope, especially you! Almost two months ago a New Year’s surprise, your doctors have said we think it’s time for you to go. And go you did, with the very same determination and ferocity you strolled into Stanford with 8 months ago. It is one of a million reasons I admire you as a human being, not just as my wife.

I have no doubt this next chapter starting with three days home here and four days home there will be handled the very same way you handle everything. You are an amazing woman with a family that loves you. It will be difficult and very trying on us all, but mostly on you. But it is without a doubt the last step towards your permanent residency back here where you belong and I cannot wait until the day we saddle up head out across the back 40 and either laugh or cry about this dark time in our lives that we survived together. It will be glorious..

I love you

To everyone else, please say a little prayer for my wife tonight as I am sure this afternoon will be emotional beyond our wildest expectations. Once again for those who have supported our family through these last two years without fail, I cannot thank you enough! We still have a very, long road ahead of us and we are still very scared, but there is no doubt in my mind without all of you praying and caring for us the way you have we wouldn’t be where we are today.

God bless you all,

More to come….


She loves me..

Today my wife told me she loved me.

Although not sounding a least bit out of the ordinary there is trepidation in her voice for she is scared. Terrified at any moment somewhere within the vast towering marble and hardwood covered hallways of Stanford there awaits a doctor ready to give her some bad news. Something in the neighborhood of her counts being wrong, or she isn’t improving as well as anticipated. Every breath she takes is met with fret as she analyzes her inspiration and expiration for volume and consistency knowing she is but a cough, wheeze or low oxygen saturation number away from possibly being kidnapped back into the BMT wing. She is a prisoner on parole, hanging with old friends praying one of them isn’t holding drugs or carrying a weapon. Anything that could lead to a quick trip back too the pen.

Two nights ago her temperature shot up after a long day of doctors poking and prodding around her already frail body. Slowly it crept up 98.9, 99 then 100. When her temperature reached 100.4 alarm bells were sounded! Of course one cannot reach a temperature of 100.4 at 2 in the afternoon, that would be a simple problem to handle! No scary situations always happen in the middle of the night when no one, even the affected wants to get up and go anywhere! But time means nothing for you see at 100.4 if held consistently for an hour with two matching readings it’s time to call the BMT team immediately! If her temperature reaches 101, we notify the BMT team then load up our car for a one way trip back to the Stanford hotel! So to say my wife is constantly on edge is an understatement. Her nerves are definitely raw.

Every day she wakes up and consciously tries her hardest to put on a brave face! She started 26 months ago by telling Leukemia it wasn’t going to win, it wasn’t going to take her from her children! Now every morning she prays GvHD doesn’t have the last word! She is incredibly strong but with strength comes doubt! Every time she looks in the mirror at herself and sees what GvHD has done to her skin, body and hair she wonders what more could this horrible side effect of transplantation do to her already ravaged body? Each day she gets out of bed alone because I am 80 miles away at home and she wonders what we are doing, is her family ok, are her kids doing well in school, and how on earth am I handling it all by myself. This of course leaves her feeling a bit out of control in regards to her life which in turn leaves her feeling stressed and disconnected. Her whole life is on hold and she fears that it will never be the same, that she will never be the same which desperately leaves her longing for the days before Leukemia ruined everything. This becomes a cumulating effect that slowly tears away at her spirits leaving her often times depressed.

So she tells me she loves me again, not just because she does love me but because she also feels a little insecure about herself. Afraid of what this disease and its after affects can do to a relationship. There are plenty of stories out there, we have heard time and again where the husband/wife has left their spouse high and dry. Marriages of years are dissolved because two people are no longer on the same page. Time, distance and illness erasing years of love, honor and cherish! It is the saddest indication of our throwaway society transcending from disposable tangible objects to human characteristics. I cannot even fathom throwing away our marriage over this bump in the road. When I look in her eyes and see her smile I only see the woman I married many years ago, not the woman she claims to see every morning in the mirror.

Last night as I slept alongside her, humidifying oxygen machine loudly pumping in the background while sounds of her wheezing, gurgling and occasionally gasping for air filled the room. I wondered what she was dreaming about and if she was comfortable enough. I wondered how I could make this transition easier for her, whether there was something I could do or say to make things better, give her the confidence she needs to go another day away from her family, help her to see there is a light at the end of this very long tunnel while also reassuring her none of us are going anywhere. While I lay there worrying about everything, she slowly reaches out, hand searching desperately and when she finds my hip, she takes a deep breath, gives it a pat and is right back asleep with a slight smirk on her face.

I don’t need to do anything. I just need to be there. That is the answer.

I quietly whisper not to worry, I love you too….