Tag: hospital

The Faces of Leukemia (December 12, 2013)

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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..

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The Face of Leukemia (December 11, 2013)

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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.

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The Face of Leukemia (December 2, 2013)

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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……

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