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 cont….

(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!

 

 

 

The face of Leukemia

What does the face of Leukemia look like?

Have you ever wondered? Is it a conjured up image? Maybe one captured from a television show or 48 hours special? A poor soul, haggard, emaciated, pale, gaunt, one step near death. There are a dozen interpretations of what Leukemia looks like.

But I ask you?

Does this look like the face of Leukemia?

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Because it is……

This larger than life human being, my wife with the radiant smile and glowing eyes is the newest face of Leukemia.

Here is her story..

Will you come with me to my doctor appointment?

A question my wife has asked many times in our relationship and depending on the workload that day or severity of anxiety associated with the upcoming appointment, my answer is most always the same.  Yes

This time was different.

My wife has been sick on and off since coming home from Haiti in June. Being the incredibly strong-willed woman she is, it was always dismissed as exhaustion, a common cold or some viral snot delivered accumulation from booger flicking within the confines of her classroom.

Headaches, night sweats, red spots in her throat, swollen gums and an exhaustion level that just could no longer be ignored.  She had it all at some point. The final straw for superwoman came when she texted a dear friend and Haitian co-conspirator who happens to be her dentist. Having tired from the continued onslaught of over the counter drugs, sleepless nights and white spots in her throat, she caved in to ask for help. After a short dissertation in regards to symptoms the immediate response was; You need to go to the doctor!

She listened.

Blood drawn, panels sent to the lab and a phone call later we were summoned to drop what we were doing and return to hematology for a thorough screening in conjunction with a bone marrow draw.

A bone marrow draw? That means cancer right? Fear instantly ran through my wife like lightning! Together we made the trip to hematology and were introduced to a well spoken, polite young doctor that instantly understood our dry sense of humor.  (this always helps) She was fantastic, easing our minds, letting us know exactly what she was doing along the way.  After an hour I was dismissed from the room so they could retrieve bone marrow and complete the testing process.

During recovery, the doctor came in and told us she put a rush on the order and we should have lab results by Thursday a mere 48 hours later.

Walking silently towards our car we held positive thoughts.  A virus, that’s  all this could be, right? Just a mean old nasty virus! In Haiti, Jacy became extremely sick for two days and this just has to be some form of tropical bug! Yep a tropical bug that’s just hanging on wreaking havoc!

Sooner than later we would discover how wrong we both were.

The next day at noon while in the round pen working one of our many horses, my cell phone came alive. Answering a call where the first words are: “I’m coming home we need to talk” is never good, so when she said those exact words I begged her to please tell me what was wrong. To my surprise, she did.

Its cancer, I have leukemia so we need to head towards the hospital right away.

Its cancer? You have leukemia? What? Did I hear this correctly? No. That’s not what she said is it? I mean we talk almost everyday around lunch and I never remember her even slightly referring to these topics. How was your ride today? or How’s work going? or Man my classroom is filled with the most awesome kids! But never and I mean ever has the topic of cancer or leukemia been the center of conversation, let alone a fear filled opening statement.

Are you there? She asked me through shakey tear filled words.

Yep, was all I could muster. Chin quivering, tears streaming, face flush with heat and feeling like someone just kicked me in the balls. I continued to stand there afraid to move, afraid to blink, afraid to breathe.

Are you ok? I asked

No, was her reply. Of course no is the only reply to such an asinine question yet at the time it was all I could say without blubbering over the phone.

We talked for a minute about why the results came back so early and the importance of leaving for the hospital right away. A few moments later we solemnly said our goodbyes.  Putting my phone back into my pocket, I continued standing in the arena motionless as my horse worked herself. She continued running circles around me finally slowing to a trot, then a walk, looking at me as if she knew something was wrong. After a few minutes with no interaction from me she moved towards me and put her head in my hand. Animals know, animals that give love in return know how and when to move in at just the right moment. I hugged her back.

My wife cried some at work, gathered herself up and cried some more. Other teachers rallied around her as the news broke, spreading like wildfire across the small campus. She received a ride home from some great co-workers so she could pack for our newly, unplanned vacation getaway to Kaiser hospital. When she pulled in the driveway my heart stopped.

Once home we held each other and cried. We wondered how we were going to explain this to our kids, pondering who should know and who shouldn’t know, wondering when do we call our parents? What are we supposed to be doing? You hear about this stuff all the time but your arrogance never lets you believe it is going to happen to you!

Feeling so confused I didn’t know what to do, how to do it or even how I was supposed to act after finding out the woman I love has cancer. I mean it all seems pretty straight forward until it happens to you! Well none of it  mattered, because the news took on a life of its own and before it got out of hand (rumors and all) my wife made a preemptive strike by posting on Facebook exactly what was going on. It worked! We were able to let everyone we cared about know without any chance for misconceptions or the possibility of someone we care about not knowing or hearing third-party from someone else.

My wife has leukemia, my wife has leukemia, holy shit my wife has leukemia, no matter how you say it, it sounds ridiculous, preposterous, and impossible. My wife has leukemia.

Leukemia

Leukemia (American English) or leukaemia (British English) is a type of cancer of the blood or bone marrow characterized by an abnormal increase of immature white blood cells called “blasts”. Leukemia is a broad term covering a spectrum of diseases. In turn, it is part of the even broader group of diseases affecting the blood, bone marrow, and lymphoid system, which are all known as hematological neoplasms.
Leukemia is a treatable disease. Most treatments involve chemotherapy, medical radiation therapy, hormone treatments, or bone marrow transplant. The rate of cure depends on the type of leukemia as well as the age of the patient. Children are more likely to be permanently cured than adults. Even when a complete cure is unlikely, most people with a chronic leukemia and many people with an acute leukemia can be successfully treated for years. Sometimes, leukemia is the effect of another cancer, known as blastic leukemia, which usually involves the same treatment, although usually unsuccessful.
Leukemia can affect people at any age. In 2000 approximately 256,000 children and adults around the world had developed some form of leukemia, and 209,000 have died from it.[1] About 90% of all leukemias are diagnosed in adults.[2]
The name comes from Ancient Greek λευκός leukos “white”, and αἷμα haima “blood”

Wikipedia

Arriving at the hospital we were sent directly to a room on the fifth floor. She was told to put on the standard issue gown and relax.  We looked into each others eyes, held hands and sat together on the bed, waiting for someone, anyone to tell us something, anything. A couple who the day before yesterday was riding horses together without a care in the world was now sitting, scared, wondering about the future for ourselves, our children, and our family.

We wouldn’t have to wait long…

A Haitian update

Well everyone our little medical mission team has landed safely in Miami! We are awaiting our last plane for the 5 hour flight home!
I have spent many hours writing and starting Monday Betty will begin posting the entire experience! Look for it! I promise it will be an interesting read!!

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