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….

 

 

 

 

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Fear

Let’s talk about fear.

Fear is a state induced by perceived danger or threat that occurs in certain types of organisms, which causes a change in metabolic and organ functions and ultimately a change in behavior, such as fleeing, hiding or freezing from perceived traumatic events.

Traumatic events?

Like watching your wife wither away to nothing, struggling to find happiness because she never feels as though there is any progress being made. To her it feels as though her body is just not getting any better! Gloom at only having only enough strength to make it from the bed upstairs to the chair downstairs then remain frozen in time as the world passes her by? Nightmares that she is still at Stanford, never to come home again.

A change in behavior?

Oh yes you mean as in a person once vibrant and bubbly now hiding from herself, the mirror and even people, for she no longer sees herself in reflection but the remnants of a weary, pharmaceutically scarred body? She no longer hears the echoes of love resonating but wallows in pictures from what once was feeling nothing but self-doubt. Trying her hardest every day to find a positive reflection only to collapse under the burden of repetitive negativity pounding in her brain.

Induced by perceived danger or threat?

As in cold sweat, elevated heart rate and blood pressure whenever the word “hospital” is uttered. A doctor insisting she walk through sterile front doors to an awaiting isolation room with no timeline for departure. The minute a fever arises or a cough lingers to long.

The thought of our children being alone, again. Waking up to an empty house, no wife to found, sad faces walking like zombies as they know they won’t see dad again for another few days. Family will help, faces will be there for comfort and assistance but it is not their parents. The threat of mom and dad not being home, wondering when they will come home and if mom will come home at all is always lingering.

And so fear grips us again as Jacy has made another journey to Stanford.

Work has been crazy hectic! Coming home on Wednesday after being at work for three days I walked into an empty house. The first day of school was in the books! Jacy’s one wish through all her recent complications was to make the first day of school. To be with her children and tell them she loved them as they exited the car. She accomplished her mission. After two years with me sending first day photos to her in the hospital I came home knowing my wife was going to be ecstatic! Yet one thing I did notice while at work, was she hadn’t posted anything on FB. Seriously! It is a first day tradition across this great nation to post your first day pic’s on Facebook!!!! Something must be wrong…

Making my way through the house what struck me was the utter silence, then as I made my way through the house I realized it was way too quiet. Calling for Jacy I received no answer. I really did expect her to be downstairs in her chair half crying/laughing waiting to tell me just how amazing it had been to drive her children to school and drop them off! She reached a milestone; living long enough to see her kids off to school one more time. But there was nothing, she was nowhere to be seen.

Checking the window to ensure I had in fact passed her car on the way up to the house. I turned and sprinted up the stairs, opened the door to our bedroom and there she lay, in a ball, crying/moaning. She wasn’t shedding tears of joy, but instead tears of pain. After a little conversation and a full patient assessment I asked if she wanted me to call Gayla her nurse coordinator. She asked me to wait until her pain meds kicked in, and so with hesitation I planted myself at the desk and waited. I didn’t need to wait long.

The pain was enormous, her head hurt, her body hurt and she felt nauseous. All bad signs. An immunocompromised subject’s body is constantly doing a fine juggling act between medications that both allow her immunosuppression system to work and drugs that suppress that very system. It is all in an effort to keep harmony while both allowing her white cells to protect the body but since they are not her white cells, keeping them from destroying the body which it sees as foreign all in the same stroke. Confusing, amazing and horrific at times to watch.

She finally stood up, looked me dead in the eye and said; I need to go to the hospital now! I again mentioned Stanford but was rebuffed as she could no longer tolerate the pain. We rapidly loaded a few things and headed to the Kaiser. Kaiser is no more than 5 miles from our home. We feel blessed to be so very close to such a wonderful facility. Arriving at the ER we were put in a room fairly quickly and were warmly greeted by staff. The on duty doctor was one of our favorites and within minutes (a lifetime to Jacy) she had IV pain meds which allowed to her to finally relax and feel some relief.

I stepped outside while a lumbar puncture was performed to call Gayla her nurse coordinator. After a brief explanation of her symptoms along with justification for the stop at Kaiser, Gayla assured me she would grab Dr. Muffly ASAP and call me right back. The phone rang within minutes and a transfer to Stanford was being arranged. Dr. Muffly wanted her there and she wanted her right now!

Of course Jacy wanted nothing to do with this plan! Fear had set in.

It was the first day of school and she wouldn’t be there when her babies returned, she promised she would be there! She didn’t want to be stuck at Stanford again, how long would they keep her, why are they keeping her, can’t she just go home after the headache subsides? She doesn’t feel like an inpatient, whatever they need to do can be on an outpatient status!

Fear makes you overlook the obvious. We all knew she needed to go. She was still in pain, we had no answers as to why her face was swollen, her head hurt so badly, and she was feeling nauseous. But fear can help you justify anything.

The ambulance came.

I had gone home, packed her some clothes and returned to the hospital just in time for the ambulance to arrive. We loaded her up and in usual Jacy fashion, people needed to come say goodbye and good luck. She is always making friends wherever she goes. Kissing her on the cheek, saying goodbye I closed the back doors of the ambulance like I have done a thousand times in my career. It didn’t feel right. I thanked the guys taking her and walked back to the car. Sitting in the driver’s seat with a very heavy heart I watched the ambulance slowly drive away.

My head hurt, my bones began to hurt and I felt nauseous. Here we go again.

I needed to work the next four days and Jacy made me promise I wouldn’t follow her down. I called her family and they agreed to meet her when she arrived so she wouldn’t be alone. I went home, greeted the kids, asked how their first day of school was and after a few jokes and giggles the elephant in the room reared its ugly head to bellow.

Where’s mom?

Now imagine being 10. Knowing your mom has been sick for a very long time, she goes to the hospital one day with the promise of being home in a couple of months. Instead you are living through her being absent from your life for 7 months while you travel back and forth to see her once a week. You now remember at one point it was very bad as nervous and scared adults circled around you, acting weird, treating you differently all because the end looked near. They kept it from you, but you knew because even though you are a kid, you are perceptive. Then you wake up one morning and mom is home! She is home in time for your birthday and all is right within your ten year old mind again. Now every time she goes to the doctor your 11 year old mind starts to worry. She comes back from the doctor each time, which makes you happy, but you still worry, and you are a little distrustful of information provided by adults in regards to your mom’s health.

That was look I had to deal with when asked; where’s mom? That look quickly turned into a squinty face and before I could even say; moms headed back to Stanford, the tears began to flow. They flowed hard and fast. Jessica looked in shock, Jake hung his head and Parker cried and cried some more. This little boy’s fear had come true and my heart was breaking. Some days I feel as though there is a constant grip around my chest and I just can’t take anymore.

The long and the short of it is this, we all face fear, each and every day in one way or another. Fear is gripping, mind bending and often time paralyzing.

I hate fear.

August 13, 2016

Today is day four at Stanford. I didn’t write anything or spread the word right away because I am having a hard time coming to grips with her being there again. It is weighing heavily on me and even though she most likely will go home on Tuesday evening each time it happens fear grips not only her but our entire family. We still have no word on the cause of her body pain or associated headache. Jacy had some severe swelling in her face that was most likely caused by a plugged salivary gland. She is partaking in *photopheresis?dialysis to hopefully clear her blood of any viruses still lingering around. Her steroids have been raised and they are tweaking her medications to be more proactive in this ongoing viral war. Getting her home can’t come soon enough!

More to come….

*Photopheresis

In medicine, photopheresis (aka extracorporeal photopheresis or ECP) is a form of apheresis and photodynamic therapy in which blood is treated with a photosensitizing agent and subsequently irradiated with specified wavelengths of light to achieve an effect.

 

 

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.

kids

 

 

 

It’s TIME!!!!!!

Saturday morning has come and gone. Quietly I made breakfast for everyone, fed Ms. Jacy, ensured each child had done their required morning chores before anyone noticed we had all slept in a little too long. I met with one of our horse borders/friends I hadn’t seen in a while and put another load of laundry on rotation while the washer/dryer spun out their last few moments.

But something is nagging me.

Lately I have taken to working on the ranch from six to noon, dropping into a two hour nap after lunch then taking care of odds and ends in the house until bedtime. This routine has developed for a few reasons.

  1. It has become too hot for working past noon around here. The days of old where I could go and go and go for hours on end through 100-106 degree’s are long gone. To many years of riding around in air conditioned cars and sitting behind a computer doing reports in an air conditioned office have done away with any tolerance once held for the almighty heat.
  2. Taking care of myself has always been on the back burner. Taking care of Jacy then the kids is always first and foremost! Between softball, rodeo, Jacy, doctors’ appointments and the ranch (thankfully I have awesome help in that regards) anything to do with me is nonexistent.

Once rodeo and softball finished I finally found some fresh air, a breather if you will; time to do what needs to be done around here and that led to my newly installed schedule which as of late has been working great!

Almost too great!

You see after a week of my newly created schedule, things around here are getting done! I am able to plan for the next month or so projects to be completed. I am not exhausted from going all day trying to get something finished in record time. Taking instead the stance of “a little bit each day leads to a lot in the future”. It is as though,,,,,,,,, wait for it,,,,,,,,,, my life is normalizing….

I know right?? A normal day, with a normal schedule, with a normal outcome! Who would have thought? Today is my last day off and tomorrow I will be back for a 48 hour shift. I chose to sleep in today after,,,,, wait for it,,,,,, a date with my wife last night!!!! WHAT??????

So today I took it easy and I feel fairly rested. Tomorrow for the first time in a long, long, really long time I will not be dragging my ass into work completely exhausted!!! It has been so long since I have felt this way that I actually feel guilty. As though something must be wrong with me!

But with sleep, rest and a normal working schedule there comes another small dilemma.

My brain is working again. Yep running as though it’s an engine with high octane fuel coursing through its pistons! Lots of horse power to spare and nowhere to use it! I cannot turn it off! Ideas for writing just flowing through my head! So far this morning my fingers are cramping from typing! I finished a few other stories written for myself or some publication in the future and then you see I have this idea for an e-book!

Yep, it’s been racking my brain this whole book thing, and I need some help. I have flirted with writing a book in the past, had several very kind people insist I should give writing a book a try and even started a few outlines. Many ideas and formats have crossed my mind and I have enough material for several books on Haiti, Mission trips, Leukemia and of course raising children. But none of it flows and like a never slowing carousel; where exactly do I jump on without getting hurt? Or do I just dare fate and take a leap of faith? (hmm think I just answered my own question) Now whether this emotional wall comes from my two year hiatus of exhaustion or just my inability to turn off my ADD long enough to form a correct thought or not has yet to be (oohhh butterfly)….

ribbon

I’m back, where were we..

Oh yes, so I need some help from all of you. You see I can’t do this alone as much as I would like too. So I am going to start bouncing ideas off the mighty brains of all three of my readers (sarcasm)! I am not saying I will use your ideas, or even like them, but I will appreciate them and use some of them and that folks is what brain storming is all about. Collective minds working for a greater good.

You are probably asking yourself why? Why am I doing this and what will my topic be? What is the overall purpose? What do I have to offer Betty? And why isn’t Betty running for President?

The last one we will talk about in 2018 when I start campaigning.

So let me give you some information to help get us started.

  1. The book will be about surviving as the spouse of a Leukemia patient
  2. Do I write it as a “how too” or a rough guide? Dry and simple, listing resources and web-sites for those who need a place to reach out?
  3. Instead of writing it as a “how too” should I expand upon my blog, telling the whole story as more of a living biography? Hoping the reader grabs a message of faith?
  4. Should it just remain what it is, a representation of my blog, leading more people to read our story, find hope while reaching out for help and answers. Or should I elaborate on each entry a little more while basically keeping it the same?
  5. Am I just crazy and none of this really matters?

If you are a follower of my writings then you know all I have ever wanted to do was help people. It is why I changed careers in my early/mid twenties when I could have easily made a nice living driving/owning my own semi-truck to becoming a firefighter. I felt the overwhelming need to help people then and I feel it now. I have made no secret that I feel there is more, not only for me but for each human being on this planet. We need to work harder on helping each other as opposed to today’s current climate. Of course that is for a longer deeper discussion at another time.

I feel sharing our (Jacy and I) experiences would be beneficial to others. But especially from my point of view, that of a caregiver, husband, spouse. I know there are thousands of spouses/significant others/parents/siblings out there feeling lost, waking up each morning wondering if today is the day they emotionally quit swimming thus allowing the proverbial water to cover their noses.

I am here to say “drowning” is not an option. They have the strength in them, more than what they know or understand, and that one person who needs them most see’s them as a pillar of strength. That strength is there, they just don’t know it. I think, I can help.

So give me some answers. Let me know what you think?

Oh yes there is a number 6 to my request.

  1. Please, I hate to pander but if you like my blog, “like” it on Facebook then go to the blog, sign up for the emails and hit “like” there as well. Also share it with as many people as possible. The more likes it receives on WordPress the more followers I have which leads to more exposure in the WordPress reader. I love talking with the spouses who have reached out to me during this time and I hope to meet many more.

Thank you to everyone who answers my rally cry, comes up with ideas or simply decides to reach out! More to come, I promise!

 

 

 

 

 

Rambling, for the love of God, I am rambling!!

Yesterday, from the passenger side of my truck while Cody drove, I slowly raised my feet and stuck them out the window to rest against the mirror support. Seat back, shorts on, flips on the floorboard my feet hanging out the window feeling a warm breeze running between my toes while I watched the world travel by at 65 mph.

I felt 16

(From here I start rambling, please forgive me)

My mind wandered to a time when I had no cares. My biggest worry was whether or not I could earn enough money during the week to keep gas in my truck or purchase lunch or help pay for beer. I worried constantly about how much trouble I would be in for poor grades or not coming home on time. I worried about a kid who felt like he wouldn’t live to see 25. Life was good, life was free.

I never understood just how free my life was.. Everything when you are young is important, blown out of proportion, lost in the minute. You behavior is strewn with emotions, feelings that you really have no control over! You are loud and obnoxious, hyper and animated, life is just beginning to open up for you to explore with not only yourself but your closest friends as well. You just want to make a difference, be taken seriously and to be heard! You really don’t know what you want to become or who you are but you cannot wait to find out. You look forward to the future.

I am turning 50 in roughly 10 weeks the future is here and I still don’t know. I still feel deep inside as though there is more!

My life has become heavy, tiring and I can’t think straight. There is so much to do around here and I just don’t want too. That is not me. I don’t know who I am, or what I want to be when I grow up and I wonder how to convey that urgency to my children. Luckily they all say they know what they want to become, hopefully they are right. I am depressed. It is hard to admit but I think I am. Writing this right now, my heart hurts and I want to cry. I want to hide. I want to go camping and not come back. I want to run into the woods like a spoiled child avoiding their parents when reprimanded! I want to disappear. Disappear onto the Pacific Crest Trail hoping to find myself once again. To feel the confidence I once held at 25.

But I cannot, life gets in the way doesn’t it?

For a long time now I have been pushing my feelings down, shoving them deeper into some void, doing my best to keep one foot in front of the other, smiling, hoping, and trying for everyone. My wife is my world, she has been my friend, confidant, lover, and advocate; of course no marriage would be complete without her also having been a staunch, frustrating at times adversary. But in the end she has always been there for me in one way or another and these last 14 years.  I too have been there for her (even more so these last 24 months) and continue to do so taking care of her anywhere, anytime.

I am a convoluted mesh of emotions. A walking mess. I cannot sleep yet when I do I cannot wake up. My stomach hurts all the time and it only stops when I eat, so I eat, a lot. My inner self hurts which makes my outer self-hurt as well. Exercise was once an escape, now it pains me to walk to the corner and back. I haven’t worked a horse in almost a month, it has been easier to have others do it for me.  There is so much to do, so I choose to do nothing at all. I am a whiney complaining, ball of self-doubt. I cant seem to escape.

But as I write this, I know what I am going through it not ok, but ok at the same time.

To everyone who will undoubtedly dissect my inner emotions, claiming I need therapy or some form of self-help assistance. I know these feelings are ok. Not healthy, but ok none the less. It is ok to feel the way I do, yet knowing doesn’t help me right now. I was raised to not complain, to cry only when it really hurts, to rub dirt on it and walk it off. So even sharing this with all of you is painful and embarrassing to me. It admits defeat and leaves me fearing being judged. I know I have lost nothing, I know there was no competition for me to lose at, but the man I have grown to become, laid upon the fondation of my upbringing feels confused and utterly defeated.

If there was some way to clear my head, to take away the confused, angry, afraid, emotional, distressed feeling I wake up with every day? I would do it in a heartbeat. But unlike a computer I cannot hit delete or save as and place it neatly in a folder labeled “crybaby” for future reference.

I wonder how many people struggle on a daily basis with trying to overcome these types of feeling inside their heads. A feeling of hopelessness, like you can never get ahead, achieve solitude or even make it through the day successfully without just quitting? I wonder how many turn away from friends and family finding alternative methods hoping to quiet the voices of despair. I wonder how many pray at the beginning of each day to feel as though they can take on the world again.

I selfishly wish to fall asleep and wake up to my wife pre-leukemia. Not for me, but for her. It is tearing me apart inside watching her hurt. She hates looking at herself in the mirror, she wants so desperately to be her old self again. She cries at the thought of only having enough strength to get up and down the stairs once or twice during the day. She is terrified at each and every visit to Stanford that they will tell her it’s time to be readmitted into E1 for long term treatment. She is sick of feeling like a prisoner in her own home. She is exhausted from everyone telling her what to do or how she should live. She is horrified at what this has all done emotionally to our family, friends and most of all her children. She just wants so desperately to get better, to be better, to excel the only way Jacy knows how! She is and always has been a winner! She isn’t feeling that way right now. It is tearing her down.

She misses her students.

I cannot begin to explain to what depths this woman misses her students! It is as though a piece of her has been amputated. She can feel the appendage as if it was still there, but she can no longer see or touch what was once hers. It has handicapped her spirits, her self-worth, and her ability to thrive inside. Every moment she is alive, she believes is one more step towards having a classroom to herself once again. Every moment her body takes a step backwards she feels it slipping from her grasp. I will never forget the moment she was offered a job at this school. We were in Vegas, the phone rang, and she answered, five minutes later she was bouncing off the walls! I can honestly say it was one of the happiest moments I can recall. These children, your children, the children of people she doesn’t even know, they all breathe life into her! You see them as your children, she sees them as our future. Each and every little personality there to grow, expand and blossom simply by being themselves.

This has and continues to be a long arduous journey. I guess all this rambling comes down to a few points. Thank God for everyday. Even though it doesn’t sound like it, I am thankful for each and every day. I get to spend them surrounded by my wife and children. I can never take a day with her or them for granted. You never know what you can handle until it is time to step up! Every day is a challenge for me right now, but I am making it. Some days are incredibly harder than others, but I am still here.  Jacy is handling it, some days are incredibly harder than others, but SHE is still here! At the end of the day sometimes that is all that matters. Know you are not alone! I have my writing, but I also have prayer, and a huge support network. I still feel alone at times, but I know I am not! When your day is shit! Just remember things could be worse. Look around on the inter-web, there are plenty of people who have it much worse off than you or I. Last but not least, thank God for faith, otherwise think of how hard this thing called life would really would be.

To the (three) people who actually read my blog. Thank you. Thank you for allowing me to ramble incoherently as I did today, to share my thoughts and feelings without judgement, to simply be. Today’s posting held no real significance other than to purge my endless inner long winded musings along with some of what is painfully shoved down deep inside hoping to offload enough that I may gather my inner Betty once again.

Betty loves you all….

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

 

 

 

 

 

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

 

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..

 

 

 

A little stronger bit by bit…

Another week has come and gone. On Tuesday we head back for Jacy’s now weekly checkup. She is happy to be home and finally feels at ease with herself. Mentally there can be no place to better prepare yourself for this long journey than home. Home is a medicine that you cannot prescribe, cannot pretend to be a part of or ignore out of fear.

When she came home for the first time a week back she sobbed at its sight. I on the other hand hadn’t realized that I have come to take home for granted. Each day wandering its fence lines, complaining about every broken bit needing repair and quirky little abnormalities that drive me insane about our little house on the prairie. When I walk in the door each night I stare at the unfinished front room, sigh at out 30 year old kitchen with broken tiles and antique (by today’s standards) stove. Heading upstairs it’s obvious our carpet is shot, the staircase needs rebuilding and every room could use a new coat of paint. I know it’s no different than how most people feel when looking at what could be reinvented within their own homes but for me it’s become a sign of failure.

Then Jacy walks in, so happy to be inside our house she begins praising each and every goofy ass part of it! Why? Because it is her home. She has been gone for 8 months, she never thought she would see this recycled, eclectic domicile again! Looking at her swollen eyes, the happiness written upon her face, she stands, shaking, crying, appreciating every little bit of it! I feel like a blind buffoon. So worried about what others think when they come over, what they see when they come inside and for what? Nothing. It is our home, a place we have struggled to keep, a roof over our head my wife loves so much she fought the battle of her life, for her life to come back too. Seeing her so happy to be here, squeezing me and telling me just how important it is for her to be home. How could I be anything but grateful for all we have accomplished together? All that we have.

Jacy worries about her children and what not being home has done for them. They have learned to be self-sufficient, but they have also learned to be without a parent as Cody has taken care of them while I have been either at work or visiting her. Do they still need her, will she feel they still need her, and will she really be able to do anything with them while she is home are all questions running rampant in her brain. She stays inside every day, too scared to step out into our world of country organisms and spores so any activity must be house based. But to her, just being in the house as a presence is better than absence and reinforces there are two parents to love and care for our children.

She never wants to leave. Each time we load up to head back she becomes nervous. Scared that she may be sliding backwards or after a run of tests the news won’t be so good. Whenever we pull out of the driveway she becomes quiet and very focused as our home becomes smaller, hidden within road dust of our car. I cannot fathom what level of fear courses through her system as we get further from home and closer to Stanford. It is home that she thinks of during her appointments as well. Every question centered on the latest information and how that coincides with her being inside her house for an even longer period of time. Always searching for more to help her feel the healing powers of home.

This week when we go back on Tuesday they will permanently remove her eyelashes in hopes it will accelerate the recovery from GvHD of her eyes. Her eyelashes have grown inward and are scratching her corneas. We will also be looking for some hopeful weight gain as she has been hovering steady in the 114 pound range. I have worked hard at feeding her very well this week even when she hasn’t wanted to eat so my fingers are crossed! I figure she needs to gain some of the 20+ pounds I have gained through this process and I am more than happy to give her all I got!!

Everything else in regards to her recovery has remained the same. GvHD of the gut is still mildly there, same with the bladder, although the bladder is doing quite well. She is still fighting GvHD of the skin, lungs and of course her eyes. There remains a fine balance between steroids and immunosuppressors to keep either the GvHD at bay or any form of infection/virus that may try to engage her system. She has made great strides in her strength as she can now climb our stairs, although the Rocky theme music and dancing at the top is getting a little overdone!

So we trudge onward, little by little, day by day and through the generous thoughts of many we continue to win this fight.

I have seen something else under the sun: the race is not to the swift or the battle to the strong. –Ecclesiastes 9:11

 

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….

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