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

 

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Home..

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….

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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.

Jacy

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….

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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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