Tag: Spouse of a Leukemia Patient

Goodbye Stanford

theycallmebetty24 Comments

2015 has come and gone.

Quite frankly it can kiss my ass.

If the first day of 2016 is any indication of things to come, then we are headed down the right path for change.

At approximately 4:21 in the afternoon of December 31st 2015, my wife Jacy Franceschi walking under her own power stepped out of Stanford Hospitals E1 BMT wing a mere 30 hours after 2015 gave its final shot to our family with the loss of my father.

jacy leaving

Take that 2015! That’s right suck on that! You can go to hell you rotten shitty damn year! You tried your best to take everything away from me, you tried your best to destroy our family! 2013 and 14 really had me weak and on the ropes but neither of you got us and you 2015, well you failed to finish the job! Oh you did your best to bring us down, but I’m not that easy and in the end it wasn’t even me that gave you the last middle finger for you see 2015, my wife was much tougher than us both!

Watching her smile as Heather our nurse disconnected the final IV line from her arm, seeing the light in her eyes grow brighter as each second grew closer to discharge. Packing all her belongings up, which after 6 months was an entire car load and then some. It was an amazing experience.

heather

At 4:15 she put on her HEPA filtered mask, walked to the door of her room, looked around it one last time, took a deep breath and opened her door to freedom. Walking down the hallway she was greeted by the entire working staff. Applauding and cheering with homemade signs congratulating her it was more than she could take. Tears streamed down everyone’s eyes, hugs were had and the pure love from every person who ever made contact with my wife was more than evident.

To say we felt like family while housed in this unit is an understatement. Each person there is special. To be a nurse, nurse’s aide or doctor in that unit is to be a remarkable human being. Every day I walked through those doors to see my wife I felt at ease. Never in the entire 6 months, even when things were rocky did I feel as though I really had to worry. When Jacy was transferred to Intensive care these people fought to get her back where she belonged. There was never a moment where her needs were not met and as is my wife’s personality she made sure every single person within E1 who crossed her path knew just how much she appreciated them.

As we made our way out the door, Jacy cried. I am sure she was crying to finally be free, but I also know she was crying because she was leaving so many special people behind. It is what everyone wanted for her but there is an intimacy that comes from creating bonds with your caregivers and every now and again those bonds become stronger than just the patient caregiver relationship. If you are lucky that happens with one or two, but if you are really lucky it becomes the whole damn staff!

I cannot express adequately just how thankful I am to the entire staff at E1. I tried my best to hug each and every one who was there before we left. To everyone I hugged and to everyone I missed, I love you, you helped save my girl, you always treated myself and my children as though we were your family and for that I am forever grateful.

I never want to see you again!

Just kidding we are coming by to visit!

Jacy got into the car took a deep breath and as we drove away, she sat quietly. Parker asked her if it was weird sitting in a moving car after being in a hospital for so long and she said yes. The 30 minute ride to her dads was silent. I could tell she was taking it all in, and trying her best to not be nauseous.

leaving stanford

We arrived at her dads and were met with hugs and happiness. Moving her belongings into the apartment it became official. We were finally on to stage two.

Her dad had completely repainted and redone the apartment just for Jacy. It is vibrant, comfortable and Jacy loves it! We spent the better part of the afternoon putting away her things and sorting her 23 medications that need to be taken three times a day. Uggh! Makes my stomach hurt just thinking about it! Within a few hours, people dwindled away, Jacy and I were alone for the first time in forever. We talked about the future, upcoming appointments and what it will take to care for her. She finally got a shower with no nurse, no lines, no hospital towels, and a nice soft warm bed to climb into afterwards. She was exhausted and ecstatic all at the same time.

Jacy Franceschi, my wife, my hero, the woman I love and adore, welcomed the New Year in by drifting off to sleep…..

Just the way it should have been….

2016 will bring some major new challenges to our family, but as it arrives and we travel through its first month I want each and every person who follows my blog, has helped my family or has been there for me to actually cry upon to know.

I do love you all and I don’t use that word lightly.

Whether it has been a kind word, uplifting passage, or deed done, I thank you. You are all part of my family. We couldn’t have done this without all of your support. We still have a long road ahead but it feels a little less bumpy and the directions a little easier to follow.

Here is to a happy and blessed 2016.

jacys hand

 

I am not the Grinch!

theycallmebetty4 Comments

This morning while drinking a cup of coffee I stared at our Christmas tree. It is a fine tree, six feet tall, adorned in ornaments collected over the last thirty years. A gorgeous shroud neatly placed around its base (thanks to my daughter) and presents arranged by size to give it that proper appearance. By all collective purposes the perfect holiday tree. But as you know, something has been missing.

The Christmas spirit resides within us all. It is not just expected motions or deeds, it is a humbling of one self, to give without expectations, to seek no reward other than a feeling of self-worth associated with being a little more tolerant of everyone and everything. To look upon your neighbor and say; Merry Christmas! Thankful for all that resides within your life.

My Christmas spirit has been like that funny noise in your car. You hear it constantly, it’s there, but when you take it to a mechanic for repair, it just won’t make any noise and you look a tad bit crazy trying to explain what it sounds like! Yep, I’ve had Christmas spirit I think? But mostly only when I am alone, for the second I am surrounded by people, I begin feeling a little bah humbug and no noise is to be found.

I have tried everything to make it happen! Purchased some egg nog, drank it cold, drank it hot, drank it with a little brandy and got a headache! Hmm is that my heart growing three sizes to small? Went Christmas shopping, didn’t buy anything and grew irritated with the continual rudeness of those around me! Yep feeling a little green poking through my skin. Helping the kids with our Christmas tree, felt giddy throwing the lower branches in the fire and watching them sizzle! GRRRR!!! Grew tired of our Christmas music, took some ibuprophen and drank tea while all three children argued over ornament placement which brought a strange smirk to my face!

What did it all mean? I wasn’t sure, thought maybe it was just a funk from Jacy being gone so long, but then it hit me! We were all lounging around watching How the Grinch stole Christmas and I found myself laughing and secretly high fiving the Grinch’s actions!!! Holy cow! Have I become the Grinch? Is my Christmas spirit gone for good? Am I going to turn green? Nervous with this enlightened moment, I almost had myself talked off this crazy train until Jack waddled in and jumped in my lap chewing on an ornament!!! AHHHHHHHHH! He looks like the Grinches dog! I am doomed!!!!

Replaying many actions over the last few days in my head trying to justify this new found failure the picture became clearer.

Have not moved to Mount Crumpit! Plus!

Trying hard not to live a solitary life. Plus!

My dog Jack, unlike Max is loved and loyal as opposed to unloved and loyal. Big Plus!

I have never thrown All the presents into the abyss! Hmm ok, I am allowed one, right?

And no one named Cindy Lou is pestering me with syrupy sweet kindness, although Jessica is trying her hardest! Plus!

Phew, its official, my heart is not three sizes two small!

Yay!!! I am not becoming the Grinch! So with that revelation let me put on my Santa suit, pat little children on the head while Jack and I load up the sleigh and then hand out the best Christmas present ever!

Jacy is on track to be released to outpatient status! We don’t have an official date yet, but so far it could be as soon as the first week of January barring any unforeseen complications!! Within the last week, she has upped her diet and is eating solid foods! She is motoring around the quad without much assistance, she no longer has a catheter and her bladder has chosen to bleed considerably less! She is getting stronger by the day! It is as though a switch has been thrown and her body is now trying it’s hardest to work! There is still some lung issues we are dealing with but they are small potatoes in the grand scheme of things!

So keep your fingers crossed everybody! Hopefully she will be at her dads within two weeks and we will finally begin phase two of this ordeal! Then if all goes right she will be home by possibly March? Who knows!

Strangly I feel my heart is growing three sizes to large!!

Merry Christmas everyone! May you be surrounded by those you love, may you send love and prayers to those who cannot be with you and may the Christmas spirit always reside within you.

The_Grinch_(That_Stole_Christmas)

 

 

So I sat in a barn..

theycallmebetty12 Comments

images-8

Yesterday after cleaning house, shuttling children, and spending the better part of an afternoon fixing my tractor (something I hadn’t planned on) a feeling of failure for accomplishing none of my daily goals swept over me yet again. Frustrated and tired, I fight a daily battle of just giving up. Wanting more than anything to walk into the house, climb into bed and pray that maybe I’ll just sleep until this is all over. Lucky for me my will is stronger than my lazy ass, feel sorry for myself attitude so I did something I haven’t been able to do in a while.

I walked into the barn and just sat down.

Now for some there could be no understanding of just how important that moment was for me. You see with life running at a hundred miles an hour there is one thing that has been cast aside day after damn day. My horses.

Jake is doing a good job. He is riding them when it’s not raining, making sure stalls are cleaned and they are fed in the morning. One of our borders Ms. Lisa takes care of them all in the afternoon, spreading the very same love and care I would lay upon them if I were here myself. But I am not and that is my mental meltdown.

Mornings of days past haunt me like an elderly hunting dog who can no longer hunt yearning for one more chance. Feeding, walking, riding, cleaning stalls then heading over to another ranch where the rest of my morning and early afternoon are filled with more horses to ride/train and of course working cows. To enter a show ring, scared to death and no matter the score when it’s over ride out having learned something new. A dream constantly plaguing me, that one day I will ride into Fort Worth on a good sound horse, under the lights with fresh cows. It’s all there, teasing me, feeling father and farther out of reach.

So what does sitting down in the barn have to do with anything?

It is where it all begins. We move so fast every day we forget about our dreams, putting them aside as life throws roadblock after roadblock in our path. Every second centered on the next dollar, the next moment with our children, appointments, sports and well LIFE. Our priorities and supposed priorities.

So instead I chose to stop and sit in my mares stalls. Cassie is my rock, she is a special horse for me. Most stories about people and horses for some odd reason revolve around little girls. I am sure it has to do with ponies, then unicorns, oh wait, pink unicorns and of course countless books written about a girl and her horse! Yet I have seen more than my fair share of grown, tough, grizzled men shed a tear over the loss of their riding partner, their friend. The same dynamics apply for us boys/men as do the girls/women, these animals we’ve spent countless hours riding, training, growing to know and understand become a part of you. As a boy you are John Wayne or the Lone Ranger, Quigley down under or the Man from Snowy River! As a man they are your roping partner, cattle mover or cutting friend. They become a sounding board for your day, they listen to your frustrations without arguing back and keep you in check when your emotions filter into the riding experience. These four legged beasts continually teach us every single time we are around them, whether its patience, empathy, kindness, sharing, determination or love. It’s all there every time they are around, and if they get sick of your attitude because you are the one not listening to them, well you just may find yourself looking up from the ground as a muzzle is looking down upon you. If we are smart, we slow down, take measure of ourselves and reward them for all they have given to us.

Sitting in Cassie’s pen, she snorts at me, walks a few circles as if to ask what the hell I am doing there in her space. Then realizing there was much more on my mind than just occupying her space, she walks over, tips her ears forward and slowly leans up next to me. Once my hands are upon her neck her head drops and she leans a little more. For the next 30 minutes she listened as I apologized for having not been around. She is a funny horse, if she knows you she will talk back, little grumbles here and there but for me it’s like sharing a cup of coffee with an old friend.

I looked around the barn, not at the barn, but actually looked around it feeling disconnected. I think I needed to feel that moment to help me reconnect and reaffirm that although this journey has been a very long two years, in the grand scheme of things it is only a blip in time. Leaving Cassie’s stall she whinnies at me as if to say; hey dad, don’t go! I gave her some fresh hay and moved on, heading over to my daily rider, my amigo Mr. Tank. Checking in with him was much the same, except this old boy is still a proud stud, therefore he doesn’t have much to say unless you are a mare. Then, well he is the Barry White of the barn. Walking around I checked on the other 15 horses in our barn, said hello to each one with a little pet/scratch time in between and by the time I was done, my world was a bit more centered.

I am blessed for all that I have. A great family, good kids, a wonderful place to call home and barn full of some of the coolest animals on earth. Tomorrow is another day, so we will keep trying.

Jacy is still fighting hard. As I have said before we are in for a long tough battle. We were lucky enough to participate in an E-wing Christmas party the other day and it really brought some wonderful Christmas spirit to those who attended. Christmas Carrols, hot coffee and cookies, plus handmade stuffed animals for everyone! I never tire at the caring that comes from each and every staff member in this wing. In a place where it would be easy to only see the negative there is nothing but positive all around! It is never a place one would dread to be, and I am speaking from the patient/family member side of things. I can only image how it must feel to work there, they are all truly special people.

Jacys bladder continues to bleed, we are still hoping for a miracle but know this invasive procedure is right around the corner and as Ms. Jacy says; if it gets me outta here well then so be it! Her diet has been increased again and as of yesterday I watched her eat a turkey burger!!!! It was awful and she could only stomach half of it, but what an incredible step towards walking out! She almost has a full covering of hair upon her head and she is walking a little more each day! Her lungs are still giving her trouble but the breathing treatments she receives twice a day seem to help. What an amazing fighter my wife is, she inspires me everyday.

So hopefully we continue gaining ground, nothing would make our family and of Ms. Jacy happier than seeing her at her dads sometime in January! Please keep us in your prayers.

Christmas is coming, be thankful for all you have for it is not a gift that makes your life wonderful it is the gift of life that makes it all worth living.