Tag: sickness

The Faces of Leukemia (December 12, 2013)

theycallmebettyLeave a comment

images-1

Sun shines upon my face, the warmth of its gentle touch brings peace to a troubled soul. I can stand outside, I can walk freely, I can run in the sun like a 6-year-old child filled with glee.  I, I, I, I, I……..I can.

Today came the slap in the face we have been waiting for, a realization that she cannot. Yes I knew this, yes I tried my best to shield her from this simple fact. But today not through talk but action, she realized finally and fully that she cannot.

Tears flowed like rain….

A healthy vibrant (although exhausted) mid thirties woman no more than 22 days ago has been reduced to a small stepping, feet shuffling, woman trapped within the confines of her own home.  She puts up a wonderful theatrical front for all to see. But once the curtains have closed the orchestra’s plucked its final chord, the seats silenced through desertion. She no longer needs be onstage, whats left of her energy and spirit emerges. For now, a bit broken, for now a bit low, for now a heavy weight upon her heart. For now sadness as a simple act of vacuuming the floor leaves her spirit crushed, her emotions raw.

When she feels as though she “can’t”, she looks into the mirror for strength, what she sees is not what you would expect. It is not the woman who 22 days ago had a full head of hair, its is not the 14 pounds lost from her full perfectly formed body, it is not sadness in her desperate eyes. Desperate only for answers as to why?

It is who she perceives to be the real “faces” of Leukemia.

(These are but a very small portion of family and friends we love and cherish all of you)

These faces that she loves so, who have taken up or absorbed her every waking morning since the moment they first met. The faces of her friends and extended family, the faces of those who uplift her in spirit and love.  The faces of Leukemia are far and wide, reaching as a pebbles ripple in a calm lake. Starting out with a small splash, tight and circular expanding, eventually touching every open space upon the water, becoming still upon reaching an open shore.

The faces of leukemia are all those touched by this disease. It starts with the victim, and I say victim because by definition that’s what you are, a victim. Every person within the victims sphere is touched, then every person who is friends or family with those people are touched and the ripple spreads.

One person affected by this disease turns into hundreds if not thousands of people effected. All reaching, all wondering why? Just as Jacy wonders why?

Just as I quietly wonder why?

So how many people can become the true faces of Leukemia? How large would a collage of faces become? What can we do help those people as they themselves process what is happening to those they know and care about?

We gain knowledge and we fight! Not for a week, not for a month, but for a year, and a year after that and we continue to fight! Because Jacy is not the only face, because there are hundreds of thousands of victims out there, hurting as she is hurting, wondering as all of you are wondering and sharing the very same pain and experiences. We fight!

Writing is how I fight. Helping with a Bone Marrow drive that not only will help my wife at some point but maybe find a match for someone else is how I fight. The faces of Leukemia range from a year old to the elderly, they are victims and as I have explained so are their families, friends and loved ones.  For them as well as my wife we must fight.

It is not enough to just walk through this world oblivious, thinking this will never happen to me. Because I guarantee if you know someone with cancer, if you have heard of cancer if you have felt the sting cancer leaves upon you then Yes it can happen to you.

So today and everyday we must keep the faces of leukemia in our minds, the faces of all cancer patients in our hearts and we must fight…. Suffering a loss is not an option, celebrating a victory no matter how small is….

We must keep kicking cancer ass, one cell at a time..

IMG_1924

The Face of Leukemia (December 11, 2013)

theycallmebettyLeave a comment

OLYMPUS DIGITAL CAMERA

 

And so another aspect of this journey begins, a long and winding road filled with new highs and lows. The first hurdle has been crossed. The hospital is temporarily behind us as we will head back towards it in a month. Now begins a fight of great proportions.  Battling her compromised immune system.

4,500-10,000 white blood cells per micro-liter (mcL).

That is what we are hoping to achieve over the next week.  It doesn’t sound like much but in the grand scheme of things it’s the difference between life and death, staying home and heading back to the hospital. Walking then running, being surrounded by family and friends ar remaining in isolation.

Jacy’s white blood cell count was obliterated, dropped to zero by chemotherapy. This was of course designed as such to decimate the mutated cancerous “blasts” of immature cells invading her system, slowly eliminating her ability to fight infection, damaging other cells and choking her system with further useless cells.

Before she was able to come home her white cell count needed to rise above 800 and for days we would get excited as it rose to 600 then dropped to nothing with an onset of fever and night sweats.  Jacy’s platelet count would drop meaning her red cells were disappearing and her body was having trouble converting or carrying oxygen within her system.  Chemotherapy as I have said before destroys all cells.  You must kill them all so new ones can grow and flourish.  Or as the doctor put it, be brought as close to death as one can get before being allowed to live. So everyday would start out with a new blood transfusion, platelets and a lot of rest.

Along with all this cellular bombardment comes the neupogen shots. These shots are started after white blood cells slowly start production. What is neupogen?

Filgrastim- (Neupogen) is a granulocyte colony-stimulating factor (G-CSF) analog used to stimulate the proliferation and differentiation of granulocytes.[1] It is produced by recombinant DNA technology. The gene for human granulocyte colony-stimulating factor is inserted into the genetic material of Escherichia coli. The G-CSF then produced by E. coli is different from G-CSF naturally made in humans.
Filgrastim is marketed under several brand names, including Neupogen (Amgen), Imumax (Abbott Laboratories), Grafeel (Dr. Reddy’s Laboratories), Neukine (Intas Biopharmaceuticals), Emgrast (Emcure Pharmaceuticals), Religrast (Reliance Life Sciences), Zarzio (Sandoz), Nufil (Biocon) and others.
Apricus Biosciences is currently developing and testing a product under the brand name Nupen which can deliver filgrastim through the skin to improve post-chemotherapy recovery of neutrophil counts.

Ok so that was the technical doctor jargon, a pharmacists evening read. The down and dirty is Neupogen jump starts your system, telling it to make white blood cells and make them now!!

Neupogen is given through subcutaneous shots, started in the hospital and once we achieved a white cell bench mark the responsibility has been passed to me for in home treatment.  For all the greatness that is Neupogen there are also a few side effects for Jacy to deal with and they are;

The most commonly observed adverse effect is mild-to-moderate bone pain after repeated administration and local skin reactions at the site of injection.[3] Other observed adverse effects include serious allergic reactions (including a rash over the whole body, shortness of breath, wheezing, dizziness, swelling around the mouth or eyes, fast pulse, and sweating), ruptured spleen (sometimes resulting in death), alveolar hemorrhage, acute respiratory distress syndrome, and hemoptysis.[3] Severe sickle cell crises, in some cases resulting in death, have been associated with the use of filgrastim in patients with sickle cell disorders.[4]

The bone pain is killing her! It hurts to lay down, it hurts to stand up, she explained it to me as such, “my bones feel like they are exploding”. Can you imagine feeling as though your bones were exploding? I can’t.

So we are finally home and the last 48 hours have been an adjustment. Jacy is still exhausted, but very, very happy to be in her home. She is sleeping a lot (which is good), her bones are exploding inside, fatigue comes from walking downstairs (although we did journey outside yesterday which was awesome). The bed is soaked from night sweats and she awakes at 3 am unable to return in slumber. Jacy is also coming to terms that her life in the forseeable future will not be the same. This is going to be the hardest for her. Not being able to ride her horses or walk outside to play with the dogs is bringing much strain to the newest face of Leukemia. The thought of not being able to teach in her classroom this year is devastating. But she will prevail.  She is an incredibly strong woman who will triumph over this bastard known as Leukemia.

Today I held her as she cried over a current life lost, the realization of a unkown future, and the feeling of utter helplessness. I have always considered myself a strong person, but until you have faced a battle of this magnitude, become a true foundation for the person you love. You realize everything you have done in the past pales in comparison. Then you cry, not in front of her, but alone, so that foundation remains steadfast. My tears of sadness shedding her pain not mine. Throwing those feelings away, never to be seen or felt again, because we can only live for the positive.

Remission is a word the both of us are longing to hear. A word associated with freedom from the grip cancer/Leukemia has upon a soul.  We will walk every step together towards Remission, holding hands, moving slowly until we arrive.

Still kicking cancers ass, one cell at a time.

photo

The Face of Leukemia (December 7, 2013)

theycallmebetty1 Comment

 

IMG_2037Hair:

We trim it, grow it, wax it, shave it, style it, comb it, do crazy things with these human DNA carrying follicles for attention. Hair, its funny we don’t really think all too much about hair as it’s an assumed portion of our anatomy. From the day we are born all of us walk through life with hair of some kind layering our bodies; some more than others and some less than others by choice, but hair none the less. imagesCAQUXXXU

But there is an elite crowd of human beings walking this earth. They belong to a very special club. A club that no one wants to join, no one person is standing at the clubhouse door banging fervently to get inside. No one..  Yet rumor has it close to one million people are card-carrying members of this fraternity.  One million people have come as close to death as you can get then climbed their way back inheriting a lifetime membership along the way. One million people. Think about that for a second….

So what do these one million plus club members have to do with hair?

They don’t have any! That is right, not one single follicle, not a stray, a sprig, a whisker or unkept eyebrow. It hasn’t been shaven down to the epidermis or plucked by a crazy tweezers wielding lunatic. Every single hair, all 140,000 strands of color enhanced, vanity driven strands are gone.

This of course is the norm when you are enrolled in the chemotherapy club, everyone’s worst nightmare right?  Its funny really when you think about it, we as a society put so much emphasis on our hair.

Turning grey or tired of your look- Color it, trim it, shape it.

Falling out- Rogaine

Thinning- Hairclub for men/transplants/comb over

Trends- Shave it, mohawk it, pixie cut, curls, bun, dreadlocks, cornrows, bob, etc..

And yet when it has all fallen out, what emphasis is there? To wear a hat or a scarf? As a chemotherapy club member you never have to worry about haircuts, dyes, styles etc.. All you need to worry about is whether or not your noggin stays warm.  There are thousands of hats, scarfs, and bandanas to choose from, or hey just step out like Mr. Clean and rock that shit!

Imagine waking up one morning and finding all of your hair-and I mean ALL OF YOUR HAIR gone. You are lying in a bed of your own hair. Pubic hair, pit hair, leg hair and arm hair and of course the hair from your head. What would you do? How would you feel? Would you smile taking the high road and consider it just another chapter in your already interesting life? Or would you curl up into a ball, terrified to walk amongst the hair gifted for fear of being spotted, ridiculed by the insensitive or pitied by the ill-informed. I am not making a judgement for one way or the other, but if I had my choice I am pretty sure a bitchen tattoo would make its way onto my dome, helping me to celebrate the obvious. I am still alive and kicking cancers ass! Now in no way am I advocating for my wife to get a tattoo on her head. It was purely a rhetorical question.

Why am I traveling down this little pathway? Because that is exactly what happened today. Jacy started officially losing her hair. Its coming out a thin handful at a time, and when she sits up in bed her hair looks like a dog when it sheds. Strands poking out of everywhere with strands littering her pillow. Staring at this and fighting an overwhelming urge to pull them out myself (it’s the ape in me) I found myself pondering those very questions. Thinking about all the times I cracked ignorant jokes about looking as a chemo patient to friends. How would I feel? How would you feel if this was happening to you?

Now luckily enough a sense of humor is what all of our friends and family have and my wife is no different. We have joked heartily about her losing hair and tomorrow I am going to shave it all off to save her from choking to death in the middle of the night on an unruly chia pet looking clump! But just the same it has changed my sensitivity level or judging from that last crack maybe it hasn’t? I digress…

Do you really want to know how much you love someone? Do you really want to understand if you or your partner are shallow and vain? Shave each others heads and see if one of three things happen.

  1. You both laugh until snot blows from your nostrils then fall into each others arms with smiles upon your faces.
  2. You realize in that moment you partner is hands down the most beautiful person you have ever known.
  3. You stare at each other uncomfortably acknowledging you are so shallow that you cannot see the beauty within. Only the trappings of what is on the outside.

Lucky for me as I stated previously this has changed my sensitivity towards others, and as far as my wife is concerned, well I have always seen the inner beauty of this woman. When I look into her eyes and kiss her lips there is nothing else. Bald or full of hair, when she smiles at me the world is a better place.  I don’t think she really knows the power her smile and personality carry in this world but I am pretty sure she is about to find out.

Anyways, Jacy already knows how to rock the bandana! That my friends is just freaking awesome!

IMG_2111

Kicking Cancers Ass once cell at a time!

 

 

The Face of Leukemia (December 6, 2013)

theycallmebetty1 Comment

THE HILLS ARE ALIVE WITH THE SOUND OF MUSIC!!!

Unknown-2

The joy, laughter and excitement of a young woman twirling, running and singing!

Yes that is the way I feel right at this very moment, for you see the woman I love has been given a bit of a reprieve! There are many unknowns in life but today we worked only on the “knowns” and the news was good, no great! News that our family needed to hear, and it was glorious!

So like a young woman in love, running across the Austrian hillsides, Betty is giddy with excitement! For you see this woman, this friend, partner and wife was told today by her doctor that she will live! She will live! SHE WILL LIVE!!!!!Unknown-4

Ok all funny drama aside, truth be told we went from a 5 year window two days ago to a 10 year window of survivability today! That ladies and gentlemen is huge! This specific strain of AML Jacy is carrying is the MOST treatable of all its ugly little counterparts.  No other abnormalities within those strains were detected either wich makes her chances for a longer happier life much more realistic. Tears of joy as my wife can now rest easy with the knowledge that barring any unforseen infections, relapses or just plain old crappy circumstances this woman, this mother of four will see all of her children grow up! For me personally that is exciting news to say the least. No one has spoken of remission yet but as strong as my wife is that is not out of the realm as far as I am concerned.

But through all the happiness, the baby steps towards recovery, the hard-fought singular battles.  There lies an undercurrent, a feeling for myself of  helplessness as I watch her slowly wither away (yes she is losing weight) unable to walk around the floor we are currently on without exhaustion. Suffering through boughts of diarrhea and nausea. She currently can’t eat because of sores in her mouth, a side effect of the chemotherapy. She doesn’t deserve to suffer like this, no one does, but especially my wife.  I want to carry this burden for her more than anything. Ease the struggle, take away the pain, remove worry and doubt. I want to do that for her, I need to do that for her and yet, there is no way for that to happen.

Her hair is finally starting to fall out and no matter how much I joke about it, or promise her she will remain the most amazingly beautiful woman I know, she is worried. Not for herself but for me, for her children. You see what she fears is it will scare the kids and I wont find her as attractive anymore. What she doesn’t understand, what I seem to have failed in all my attempts at communication throughout our marriage is; I see her from the inside out, I have always seen this amazing woman from the inside first. Now don’t get me wrong, my wife is incredibly beautiful on the outside as well!  But what makes her attractive, what makes those eyes shine so bright or her smile gleam under a mid day sun? It’s the radiance of her soul shining through.

So how do I convey to her that hair or no hair, skinny or fat, in shape or not, there is nothing that will ever change when I look deep into her eyes. The feeling I get while holding her hand, or the nervesnous still encasing me when she leans for a kiss? She needs to know, and I mean know that we will walk this path together, side by side and I will carry as much of the burden as humanly possible.  Fighting cancer is a WE thing, not a ME thing. No one fights alone, no one! And when that someone is the one you love, that trust, that honesty shared between you both from the moment you said “I do” throughout the years evolving and growing until this very moment, is exactly what the two of you use to lean on each other and make it through!

Thanks for letting me get that off my chest, that was little bi-polar moment huh? Happy then somber, well then lets get back to happy shall we? 

Now where was I? Oh yes, THE HILLS ARE ALIVE WITH THE SO- Oh to hell with it! We are KICKING CANCERS ASS!! YEAH!!!

photo-2

The Face of Leukemia (December 2, 2013)

theycallmebetty1 Comment

IMG_2111

Another couple of days spent sitting patiently watching her sleep. For some this could become tiresome or even boring, but not for me. Time trudges on, as the thought of her waking to speak with me, even for just a little while weighs heavy with anticipation!  A second of lucidity, a moment, a glance, the chance to press her cheek against mine long enough to feel close again.

Through all of this, I am reminded that as her husband it’s my job to care for this woman.  It is an honor to ensure she has all she needs and it’s my privilege to do so. But none of that would be as easy as it sounds if it weren’t for all the wonderful people who continue to support our family back home. To continually be humbled by the kindness, care, love and empathy shown to us by our friends, co-workers, acquaintances and strangers is overwhelming to say the least. But I am and I thank you all..

Saturday while staring at the east Kaiser wall an epiphany overcame me! So after a little one on one discussion, today with Jacy’s help the two of us acted upon that revelation.

This morning my wife woke up, shuffled her way into a shower, did her hair along with a little make-up. Now this of course took all the energy saved up from a solid nights rest that one participating in chemotherapy could muster, but that did not deter her from participating in this master scheme. A phone call, some texting, our kids taken to school without the slightest knowledge (because loose lips sink ships), and I stealthily rolled into the parking lot of Dixon Montessori Charter School at 0800.

At 0815 I cleared the threshold of Ms. Jacy’s classroom with nothing more than a smile, a cell phone and one iPad mini in hand.  The students were gathered together and a simple question and answer period began. You see Ms. Jacy (as most already know from reading my blog) was hauled off to the hospital right after returning home for her lunch break on the Wednesday before the Thanksgiving holiday. Although her students knew what was happening through reports on Thursday and Friday, they had not seen or spoken with the teacher they have all grown to love since.

That was about to change

Jacy’s students know me either as Mr. Jacy or Firefighter James, Ms. Jacy’s husband. So not a lot of time was wasted with useless questioning about my presence. The kids were excited to see me and to hear the latest news, especially in person. But when I held up the iPad and explained my plan the place went nuts!

Now it took me a few tries as I am not the most advanced person immersed in the world of technology. But for the rest of my life I will never forget the sounds of joy that came from each and every student when I turned the iPad around and there was Jacy’s smiling face looking back upon these students. They cheered and clapped and screamed HELLO! A few “bomb-diggities” were tossed about freely! It was fantastic.  She could see all of them and they could see her. I stood as still as I could holding the iPad up so she could take in the room and they could feel as though she was right there with all of them.  This woman truly loves these kids, all of them and they love her! She has spoken of them everyday since being incarcerated in the Kaiser hospital system.  She told them all about her stay, what was happening with her and how much she missed them! It was grand.

When we were finished,  looking down and saying goodbye into the iPad, she beamed at me with a look of happiness. The look on her face warmed my heart, but being the ever gruff man I am supposed to be I choked back a bit of mist in my eye, told her I would see her in a couple of hours and hit the end button.  Walking out of the classroom I knew Jacy had just received a good old-fashioned jolt of uplifting spirit! Something we all need from time to time, but more so for her right now.  Looking back, pretty sure some skipping was done on the way back to the car. Maybe even a selfie high-five?

This week is going to be a long one. There are more complications like the persistent headache that never goes away, continued fatigue and weakness, there are also some sporadic nosebleeds which have us worried just a bit.  She can’t bleed as there is no way for her blood to effectively clot, so she has been receiving blood and platelet transfusions.  Friday is D-Day and it cant come soon enough. It’s when we find out whether the first round of chemo did the trick! There is a long road ahead for us and every time we meet the doctor I feel as though it is preparation for the road to get longer. But never the less we will travel this road and hopefully meet some really wonderful people along the way. Hopefully we can spread the word about Leukemia and the effects it has on its victims, their families and friends.

The face of leukemia spares no one.  It belongs to your mother, your father, brother, sister, uncle, aunt, friend, acquaintance, and stranger.  The face of Leukemia can attach itself to any and every person in the human race and it does not discriminate. The face of leukemia cares not about your age because, old face, young face, the face of an infant it still survives. The face of leukemia doesn’t care about your  financial status, whether you vacation in the Hampton’s or live in a cardboard box under a bridge.  The face of leukemia is driven by this disease and the victims it inhabits therefore the face of leukemia is and always will be you.

Look in the mirror and ask yourself, what would I do if I had cancer? Who would I turn too. What questions would I ask? How would I react? Would I be ready to take cancer on and kick its ass without wavering?

I never asked myself those questions before now. But I have, and I am going to do everything in my power to make this a success for the woman I love. I am also going to tell everyone I can about leukemia, it effects, its signs and symptoms.  Then with a little luck, the power of positive thinking, prayer and the amazing skills associated with the many medical professionals we have encountered up to this point.

“The face of leukemia” will have a happy ending!

Because I love her face, and leukemia can’t have it anymore……

205227_500224146658813_1005775143_n

The Face of Leukemia (Saturday Nov 30 2013)

theycallmebetty2 Comments

images-1

Chemotherapy (often abbreviated to chemo) is the treatment of cancer with one or more cytotoxic anti-neoplastic drugs (“chemotherapeutic agents”) as part of a standardized regimen. Chemotherapy may be given with a curative intent or it may aim to prolong life or to palliate symptoms. It is often used in conjunction with other cancer treatments, such as radiation therapy or surgery. Certain chemotherapeutic agents also have a role in the treatment of other conditions, including ankylosing spondylitis, multiple sclerosis, Crohn’s disease, psoriasis, psoriatic arthritis, systemic lupus erythematosus, rheumatoid arthritis, and scleroderma.

A lot of really fancy words that add up to a great weekend at your local hospital huh? Over the last few days I’ve had numerous people ask me several question about chemotherapy and its effect. More specifically its effects on Jacy.

Heres what I have learned in the past 240 hours.

Chemotherapy is extremely hard on your system as it not only kills the “bad” cell or cells targeted for annihilation, but it also kills all the “good” cells in your system.  Hence the reason for a prolonged hospital stay.

While in the hospital you will experience several really interesting phenomenons.

  1. Night sweats-not just your average sweat either. Picture running the Boston marathon. On a 100 degree day. With 100% humidity. While wearing a garbage bag. Over your wool suit. You getting the picture yet? It is not uncommon to fall asleep and wake up in a virtual pool of sweat.
  2. Hot flashes- these aint no menopause, room is spinning type hot flashes either! These suckers come on like a mid summer Texas heat wave! 1450743_10202598276704690_1911443489_nThere isn’t enough water in Lake Tahoe to cool these bad boys down.
  3. Shivering- Whilst you are sweltering amidst your hot flashes, praying for something, anything to cool yourself down. Dont fret because not long after your hot flashes arrive the arctic bound shivers and shakes take over. Yep cold as ice, goosebumps so big there should be a hunting season and never ever enough blankets to bring you back to room temperature.
  4. Diarrhea- That’s right boys and girls no treatment for any life altering cancer would be complete without this little gem. Not your average diarrhea either. It glows! Hee hee, that’s right, it’s a bright yellow/greenish almost snap-light looking glow. It’s that special poo that makes a spectacle of itself.
  5. Mass urination need to go pee? Do it! Then in 10 minutes get up and do it again! Remember you have 1000’s of cc’s running through your system and thanks to chemotherapy killing you appetite, that stuff just filters right on through you.
  6. Loss of appetite- yep, best weight loss program on the planet. P90X, the biggest loser and Jenny Craig got nothing on this little regiment of fun! Simple really, just inject your body with near death chemicals then lay around for a week fighting the urge to vomit. Now throw some hospital food your way (uh yuck!) and there is no way you are gaining a single pound sister! Oh snap!
  7. Multiple needle sticks and blood draws- ever wonder what a pin cushion feels like? Well no more, because my dear you are now the human version. Got the runs? You get something to harden that up through an injection. Got constipation, you get something for that in an I.V., need blood, antibiotics, pain reliever, or anything else to counter react what ever you were given an hour ago! In it goes, through a needle stick or straight through an I.V.
  8. Uncontrollable sleep patterns- One minute you are having a nice conversation and BAM! You are ass out for the next four hours! Wake up bright-eyed and bushy-tailed, ten minutes later and BAM!  Back asleep for 6 more. Heck you may even fall asleep in the middle of talking with your doctor! Dont worry that information wasnt important! It’s going to be this way for a while so get a really good pillow Rumplestiltskin.
  9. Radioactive urine: Now this depends on the type of treatment you are getting, but once you start chemotherapy no one is allowed to use that 1456562_10202602458089222_1239893847_nbathroom but you! Wouldnt want your coin purse to glow in the dark you know.
  10. Chemo sores in unexpected places. Yep that’s right boys and girls if you pump the system with chemicals and they exit through you urinary tract/bowels guess what? Your skin doesn’t like it very much and reacts with fervor? I’ll just let that picture soak in for a while as you process and visualize your own personal nightmarish looking sores.
  11. Last but definitely not least Hair loss. Complete hair loss. You killed all those “good” cells with chemotherapy which means you killed the cells that deliver nutrients to your hair follicles. So suck it up Telly Savalis. Sinead O Connor has nothing on you. But when you get your triple XXX tattoo please make sure it’s centered correctly upon your neck. I would hate for you to look strange.

Over the last week Jacy has experienced all of these with the exception of sores and  hair loss.  So far we are attributing this to very careful hygiene and a solid barrier of protection delivered through a specified creme.  Diligence has been the utmost of priorities.  As far as the hair loss I am still hedging on stubborn Cuban genes, but the doctor has assured us both the hair will go and when it does, she will just wake up one morning to clumps of hair all over her pillow.

Tonight we sat across from each other and played words with friends. I know it sounds silly or even boring but for me it was awesome! She is in great spirits after her first day off chemotherapy.  The bathroom is still never far from her reach and the nausea is still there, but her beautiful smile is larger than ever and that kick ass attitude carries the same resilience.

Our doctor continues to remind us we have a long road to travel. The shivers come on uncontrollably and usually arrive about the time she is really starting to feel better.  No matter what happens she will need a bone marrow transplant and it will be a long week waiting for the ability to draw her own bone marrow for testing to see where we stand in regards to killing all of the ‘bad” cells.

As many of you know I took the end of the month off because this was the week we were supposed to go away and be together just her and I.  A break from children, the ranch and life in general; the type of break every marriage needs from time to time to reconnect. She had been asking for me to make this happen for quite sometime.  Apparently she unknowingly decided how it was  going to go, and short of not being able to sleep together in the same bed. No bar or drink service allowed, no swimming pool or spa for us to lounge about during the day. It hasn’t been all that bad. We have gotten a ton of alone time, meals (well just hers) delivered to our room, turn down service, cable t.v. and some serious privacy.  We have also spent quite a bit of time gazing into each others eyes, holding hands and softly saying “I love you” while the sun sets over the eastern wall of Kaiser.

I couldn’t have asked for a better partner to go on vacation with, even if it’s in a hospital, with a life altering event hovering over our heads. I love you Jacy, you are my best friend, one hell of a partner, hands down the most beautiful person I know both inside and out! As I said the day we married, I cant wait to spend the rest of my life with you.

So lets keep kicking cancers ass!!

1234955_10202036974392483_720193197_n

The Face of Leukemia cont….

theycallmebettyLeave a comment

Unknown

Fast forward a few days…

From Friday through Tuesday we have experienced highs and several lows.  I could bore you with the day-to-day activities but really there is only so many ways you can describe helping your wife get up, put on her socks then carefully assist her with going to the bathroom. She has named her I.V. stand “Neberkenezer” and I have done my best to screw that name up each time she asks, because I know if I frustrate her to the point of laughing she is still fighting. It’s a little known combat tactic I like to call “Taming the Cuban”.

There has only been one major incident and that was Monday morning while I was returning from a short trip home.  Jacy decided that since the nurses were changing her sheets she would get approval to take a shower. Having felt pretty strong up this point our Superwoman gets the ok, has the I.V.’s disconnected and wraps her arm in cellophane as to not contaminate her ports. From what I understand it was the shower of a lifetime, warm cleansing, fantastic for a person who hadn’t been allowed to shower since Wednesday.  Standing in front of the mirror afterwards she felt a little dizzy, turning around to head out of the bathroom all she remembers is calling for Emma (another AWESOME nurse) as she collapsed and hit the floor. She awoke to an entire team of hospital personnel working one her. What woke her from this unintended slumber you might ask? It was a doctor screaming to his team member to intubate! She mumbled I am fine several times and everyone began to calm down. Jacy had encountered a bout of Syncope.

“Syncope (/ˈsɪŋkəpi/ sing-kə-pee), the medical term for fainting or passing out, is precisely defined as a transient loss of consciousness and postural tone, characterized by rapid onset, short duration, and spontaneous recovery, due to global cerebral hypoperfusion (low blood flow to the brain) that most often results from hypotension (low blood pressure).” 

Poor Emma tried to catch Jacy and when she couldnt she tried her hardest to get her onto the couch adjacent to the bathroom. When that didnt work and she couldnt reach her phone she had to hit the panic alarm, this signals “Code Blue” which is cardiac arrest in a room.  Needless to say the hospital sprang into action and as my wife put it with an embarrassed smile upon her face; “More people saw me naked in that one moment than have my entire life”!

Needless to say I walked in and was shocked! I looked deep into her eyes, with the obvious strain of a worried husband. held her hand tightly and with a slightly turned up smile said: Really! You couldnt have waited to get naked for five more minutes! Maybe I wanted to see some of that! Ohhhhhhh I get it, its all about the attention! What ever!!! Show off!! We chuckled, I hugged her, then she drifted off to sleep one more time..

The chemotherapy treatment is extremly hard on the body and even through the strongest of human beings it can desmate a persons desire to try. Jacy has kept a postive spirit even when she started feeling as though never getting up again was a viable option. These chemicals have a nasty way of tricking your brain into believing you are feeling better one moment then slapping you in the back, carefully holding thier mind altering thumb down upon you.  Its affectionatly known as “Chemo-Brain”

Jacy has slept more in the last week than in her lifetime.  Although this is a good thing as it allows her body to work really hard without her feeling anything it also leaves me at her bedside concerned.  Not for anything in particular but because I cant speak with her. Just being by her side isnt good enough for me, I have just enough medical knowledge to know too much and not enough medical knowledge to be satisfied.

The what is, the how too’s, ifs, ands, whys all running through my head like a runaway train. By ten at night my brain is so exhausted I cant form a ledgible sentence. So everytime she wakes, I smile, kiss her forehead, help her out of bed and walk her slowly towards the bathroom with Neberkenezer in tow.

We have tried daily to keep her walking as this is vitial to keeping her strong. Her distances are getting shorter as is her ability to breathe under exertion.  That is also hard for me to watch as we all know this wonderfully vibrant woman as the spin instructor, runner, horse rider, saver of all dogs, haitian children and all around go getter that she has become over the years.

Our family has been blessed with an outpourning of support from close friends, both of our work associates and the community as a whole. These wonderful souls have lifted what normally would weigh heavily upon my mind as I feel the love and support all around me. I could never have asked for a more wonderful community to have chosen to make my home.

I also have a different understanding of wants and needs. Its one thing to want things, another to need things, but to see somones ability to thrive unwillingly taken away from them makes all those personal wants and needs seem a little ridiculous.

As of Wednesday morning my wife wants to beat cancer. As of Wednesday morning I need my wife to beat cancer. My children need thier mom to beat cancer. My children want thier mom to come home. Our entire family and community need this wife, mother, daughter, granddaughter, aunt, sister, and friend to beat cancer and come home.  I will settle for no less, she will settle for no less, I will stop at nothing to ensure this happens, I know she has the fight in her, I know in my heart she will triumph but in the end it really does make wanting or needing anything else seem pointless.

OLYMPUS DIGITAL CAMERA

The Face of Leukemia cont….

theycallmebettyLeave a comment

(Sorry everyone I am a little exhausted today and my writing shows)

The next day brought a tsunami of nurses and doctors. They filled into Jacy’s room, each with a different explanation, each with an intended purpose, each wanting to ensure we knew what was happening and why. They were fast, they were thorough, they came and went just as quickly. They were also some of the nicest people I have ever met.  I mean seriously generous, kind-hearted, nice people.

You know what I am talking about, the kind of people you see in a small town where everyone knows everyone and when someone is down they all rally behind that person with empathy, generosity and love.  Wait that sounds familiar? Nawww that doesn’t happen anymore these days. (sarcasm)

Anyways the first nurses we became acquainted with were JoAnne and Wayne.  Wayne is a 40 year veteran in the nursing profession and it shows right away. His knowledge and approach with patients is mesmerizing.  This man could teach a very successful class on customer service.  JoAnn is hilarious and does her absolute best to keep us in good spirits from the moment she strolls through the door.  She is absolutely adorable, her and Jacy hit it off right away, a new friendship is born.

The morning is filled with more needle pokes, more blood drawn, and an echocardiogram of Jacy’s heart. This was needed to ensure her heart was healthy enough for the Chemo meds as they are extremely toxic to heart muscle. So a baseline for cardiac output is measured, tolerances devised and the green light given for treatment.

Dr. Truong comes in to discuss possibilities and probabilities in regards to Jacy’s treatment of chemotherapy.  We sit together in awe as numbers, types, statistics, age, medicines and death are all thoroughly covered.  In the end Dr. Truong tells us it doesn’t matter what current statistics are, what matters is you the individual.  You, your brain and your body will determine the outcome of this procedure. She emphasizes a positive attitude will get Jacy along way during treatment.  She looks up to see Jacy smiling her patented big radiant smile and instantly knows attitude isn’t going to be a problem.

Within minutes the I.V. stand becomes loaded with several cocktail mixtures for inter venous consumption.  Lines go in, Jacy lays back and before long my lovely wife, who three days ago thought all was right with world is now a Cancer patient in treatment with chemotherapy.

We spent the better part of the afternoon talking about the last ten years together, where we came from and where we hoped to be when we retired.  Promises made to slow life down when we walk out of this hospital, but I know deep inside that isn’t going to happen. It takes a lot to hold down two jobs, run a ranch and save little puppies from death (Coopers Good Dog Rescue) then raise four children while participating in kids sports, 4-H, FFA, high school rodeo and well good old life in general. Truth be told it has created memories we will cherish together always. We talked about everything under the sun but do you know what we didn’t talk about? Letting cancer win! Thats right, positive attitude all the way! Every one of our conversations about the future had the two of us in it, no death, no separation, only triumph and togetherness. Our conversation started winding down, we made fun of cancer a few more times, even held each other and cried one or two more times.  Then we sat back and began to wait. For what I did not know, but we waited…

While all this was happening,  behind the scenes at home an army was taking shape.  A collage of human spirit weaving its way slowly together getting stronger and stronger by the minute. It was amazing, I had received a few phone calls from loved ones and very close friends within minutes of Jacy announcing her condition of Facebook.  But those few phone calls started a ball rolling that like a snowball tossed gently down a fresh snow covered hill, grew larger while gathering size and speed until it would become an avalanche of love and support so great that people wanted to be consumed by its force and power. Humbling to the say the least.

 

Night rolled into day and I awoke, rolling off  the couch from hell to watch the nurses change out a fluid bag on my wife’s I.V. stand.  She awoke feeling fine, just a little tired and still ready to kick cancers ass!

By 11 the Dr. Truong had re-emerged bringing her infectious smile to our room.  We had a very nice conversation where she explained the importance of a spinal tap on Jacy to retrieve spinal fluid. The Spinal fluid would be tested to ensure no cancer had spread to jacy’s brain (this of course would be devastating) or was trapped within the spinal column. If so this would lead to a chemo treatment directly into the spinal column itself.  No one wanted that…

Jacy is still bouncing off the walls with positive attitude and posting pics of herself on Facebook.  This is good for her, as the higher her spirits for a longer period of time the better mental state she will be in when the chemotherapy really does make her sick. I sit patiently by her side, knowing that moment of nausea will come soon.  She has three “pushes” of high does chemo drugs to go through and the first is tonight.

At 5 pm the nurses assemble for the first “push”, they are covered in gowns and face masks, it looks as though this process should be a scary thing not a positive one. It lasts for 30 minutes, is monitored by nurses for any abnormalities within jacy’s vital signs and the nurses kick me out of the room when it happens.

Walking the halls I am sick to my stomach! I still can’t believe this happening to us! But I promised to be positive, so here goes. I am positive we are going to beat this! I am positive my wife is going to be fine. I am positive I will love this woman to the very end! I am positive I can handle all of this for myself, my wife, my family, and my friends.  I am positive we are going to kick cancers ass…

And it all starts right now!