The gift…

Life as of late is holding me down. A weight upon my chest, a hand-held defiantly to my face, paranoia, fear, sadness, exhaustion all playing upon my emotions. Some days are harder than others, most days tolerable, my fortitude is strong, a resolve steadfast, I awake each morning and start all over again.

My wife is worried that my plate is to full, she see’s it written across my face. The new lines forming upon my brow, a redness to my cheeks, a constant itch that travels across my head, face, chest, neck and shoulder when stress becomes intolerable.

Conversations change, today is a “good” day while 12 hours later, no conversation at all, left staring, wondering what I would do if she didn’t come out of the ER alive? Laughter becomes fun, dark humor is everywhere, trying, straining, yearning to pretend this is not happening. A ceiling is my new meditation portal, alone in bed, lying dead straight in the middle, wondering, worrying. Past times would find me reveling in a moment like this, now ashamed to be taking up a portion that is her place.

Why? Why does life go like this for some, yet flows so effortlessly for others? Never was I blessed with any one talent that allowed me the luxury of standing apart from a crowd. My entire life has been marginalized, left in the “average” column.  Average size, average intelligence, average GPA, average looking, average job performance, average minor successes.

Yet for some reason I feel as though God has blessed me with a gift. A gift others would most likely refuse, kick to the curb, drop and run away screaming. I am willing to admit, when bestowed upon me it was not an easy one to accept. But being a man of faith, I knew no matter how hard I fought, in the end it was mine. And so, it has come to pass that with this gift, I have earned a few extra lines upon my face, some unwanted grey hairs, an inability to sleep some nights along with an overall fear of what may lie around the very next corner.

This gift it seems also brought traits I never knew existed within me. Care, compassion, love, patience and understanding. Not just for myself, but for all forms of life. Imagine a gift so powerful it opens your eyes wider than ever before, it ignites your senses to an almost raw irritating state yet you are thankful for the feeling. Imagine being able to stand, while all crumbles around you, seeing an alternative, an answer, a future destination. Imagine knowing when the day is through, no matter what has been thrown emotionally towards you, deep inside you will awaken the next morning to do it all over again! That is what this gift has become and I wish I knew how to share, but I just can’t.

I carry the souls, the faces, the lives of all who have perished before me. Those souls have built me into a stronger man over the years, stronger than I ever was or could have been in my youth. From every response, medical aid, vehicle accident or fire that have gone badly awry; to the losses of those closest around me, ones that I love more than most could imagine. I carry those days, those moments, those instances of life disappearing before us in my head, in my heart, a scar upon my soul. Some moments come with pictures that can never be erased, tales that can never be told, slivers in time trapped for eternity within my dome. Family members never knowing, never seeing, never having to see the imminent demise of those so truly loved. No horrid pictures permanently scarring their psyche, no electrifying screams, no tantric goodbyes. Over 19 years I have done my very best to absorb, deflect, and care about those who have lost someone. Carrying that burden has been my privilege. God allowed me this wonderful gift.

And so now the gift hits home. What better human being to handle this very situation than myself.  I have been trained well, prepared for all contingencies through mentorship and experience.

Yes I am tired, yes my worrisome self is working overtime, standing on high alert, yes my heart stops, skips a beat every time she proclaims not feeling well or becomes clammy and pale.  But my gift churns onward, allowing me an ability to focus on the good things and recognize in the end all will be ok. Teaching me sometimes one needn’t seek all the answers, but instead too know deep down in their heart things will be fine.  My gift tells me there are those in much worse shape than we, and to be thankful for all we have before us. Constantly reminding me how precious life truly is and to awaken every morning with a smile, because you can.

So as my wife worries about me, as my friends ponder over my ability to handle this very situation, as our own parents fret over the unknown, do not worry, like a ball player riding the pine all season long, all I ask is this, put me in coach, give me a chance, this gift could possibly be the one thing I am actually good at! Becoming the Abbott to her Costello, Jerry Lewis to her Dean Martin, the Sigfried to her Roy, and then when my time comes, my moment here on earth is finished,  I will finally be a success and wont have lived an uncaring, callous, self-centered, marginalized, average life…

Now I think its time for some sleep.

Goodnight Jacy I love you and thank God for you everyday… Relax, all will be just fine..

 

 

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Nothing about cancer! Lets talk horse trading!

Jacy made me promise my next posting would not involve her, Leukemia, the kids, our family and everything we have been going through! Being a man of my word (amongst other irritating habits), here is what crossed my mind while reading through a few Craigslist classifieds this evening!

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When purchasing a new horse many words are tossed about setting the “tone”or ‘describing” to the utmost accounting of accuracy every aspect of said for sale animal.  While many, many sellers are indeed honest people looking for a good home for ole Mr. Ed, one must remember a single persons description is another interpretation. With that being said I have taken it upon myself to help everyone with an honest breakdown of the most common terms or descriptions used to date in the horse sale arena.

 This horse is sound!

Meaning: You can hear the sound it makes as its hips, cannon bones and hocks all creak, crack and snap while walking on by.

 

Greenbroke: Yep every green (never before broken) bone you have in your body will now experience a new feeling of pain after buying this little gem. Hope your insurance is paid up!

 

For experienced riders only!Unknown-2

Meaning: No person with a brain in their head should even attempt to ride this horse! By stating this little excerpt the sellers feel they have exonerated themselves from any liability.

 

Ready for what ever discipline you desire!

Meaning: We tried to get this horse to do everything, it wants to do nothing therefore good luck! 

 

As you can see by the breeding this horse is worth twice what I am asking!

Meaning: Breed two MENSA card-carrying geniuses and the odds are still there for a Sponge Bob Square pants kid to arrive! Just because the parents are awesome doesn’t images-4mean the baby is too! This horse is the dumb-ass! It is worth exactly what you are asking..

 

Horse moves off the leg!

Meaning: with two spurs and a crop!

 

Trailers, ties, bathes with ease!

Meaning: Runs away from, pulls hard on the post and dances like a chicken on a hot roof! 

 

Dead broke: One foot in the grave! images-3

 

13-year-old with no papers!

Meaning: 18-year-old: prove it!

 

This horse is very intelligent!

Meaning: Must be because it has the owner fooled! images-2

 

This filly was born to cut cows!

Meaning: this filly was born to eat and poop, until it sees a cow for the first time it could just shiver and run away, the choice is yours.  

 

You will never find another horse like this one!

Meaning: Yes you will, its freaking Craigslist! Just look two ads down. 

 

She can sit in a pen for a month, then go out and win money!

Meaning: She is obviously the exception to the rule, because any other horse I have ever seen who has sat in a stall/pen for more than a week is a tad bit testy upon exiting! 

 

Drop dead gorgeous!

Meaning: most likely average looking?

 

Never kicked or bucked anyone off!

Meaning: no one has tried hard enough!

 

Stands still for the farrier!

Meaning: after several kicks to the gut. 

 

Comes with trailer!

Meaning: we can’t get this piece of crap out of here fast enough! 

 

Every one of these are straight out of Craigslist advertisements, so remember buyer beware. A horse is a one of a kind delight, make your new horse the very best experience it can be! 

 So there you have it! Nothing about cancer! Wait? By saying “nothing about cancer” am I really saying something about cancer? Darn it! I think I broke my promise!

Oh well….

 

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Leukemia’s torn heart….

 

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This journey we are on has taken us many places, both in the physical sense and metaphorical. Today it seems as though a new issue is exploding inside this ever churning brain of mine, leaving me scrambling, and ducking for cover. No man ever wants this problem, nothing good can come from it.

It is the feeling of being torn between two loves.

My wife, this woman for whom my world revolves, a center to all my affection. She has unwittingly become 50% of who I am, what I have become and, ultimately what I will be remembered for after perishing, leaving this earth behind. When she is around I can’t get anything done for the overwhelming feeling of needing to be by her side. Now with Leukemia, that feeling has magnified and being by her side, caring for her is all-consuming, my hearts contentment.

Learning the Leukemia dance (two steps towards a hospital, one step towards our home) The leukemia dance is a funny little number. Slow and steady like an 80’s love song, crooning across a roller rink, grab your best girl and don’t fall down, couples only on the floor, couples ONLY on the floor please. Then broken and angry with failure forcing you to mosh into the pit of despair while Godsmack beats down upon you! When you least expect it you find yourself doing a happy dance, joyous news brings the B-52’s tapping at your door. But in the end all I hear anymore isn’t music to my ears, but the constant beat of a heart monitor telling me she is alive. The quiet sounds of her breathing while I stare, awake, not wanting to miss a moment, standing guard, like century, evil shall not pass.

Our children. They need me as well and even though they seem to be handling the last 50 days just fine, I know deep inside they must be worrying. None of them really know how to talk about what is happening with Leukemia, our family and the new dynamics, but this is what I have observed. The oldest is treating Leukemia with a bit of denial; as in “oh yeah mom came home from the hospital today it’s all good”.  Next in line the 13-year-old asks a myriad of questions in regards to moms health, how long it will take to get better, reassurances she will get better and what can he do to help! Our 9-year-old daughter has taken to reminding me to tell mom she loves her over and over and over and over.  The 8-year-old on the other hand is pretty much in a world of his own and thankfully doesn’t comprehend or wish to comprehend any of what is currently happening. Lego’s are king!

Either way they are four beings, four souls, four of the most important people in my world and instead of being able to give to them emotionally, unconditionally as a father, right now I am taking from them at every turn and corner throughout the day. They have all stepped up their game. Chores, school, packing lunches, cleaning the kitchen, doing laundry, helping with the ranch, it’s really quite nice seeing these little versions of ones self working hard together towards a common goal. Now don’t get me wrong it isn’t the Walton’s (you younger ones look that up! You might find an episode on TV land) going on over here by any means, they still fight like cats and dogs, which in brother and sister land is how it should be, but it is nice to see the effort non the less.

So how am I torn?

These are the two loves of my life. My wife and my children. I must give to my wife first and foremost, but the need to nurture my children is every bit as strong. It is a dilemma which has no answer. A challenge or conundrum if you will. This feeling of utter helplessness as a father of needing to be in two places at once. Forming the solid foundation for four while building upon a marital foundation of two.

In the end it will all be fine. We will arise from the proverbial ashes, stronger and better than ever. Our children will hopefully learn in a positive way how to handle family struggles while relying upon one another for support and strength. Our marriage (Jacy and I) will grow and develop an even stronger bond through our faith and love for one another.  These are all positive things! Maybe I should just quit worrying? I guess sometimes you need to be torn to learn how to mend? hmmm sounds like a future Words of Wisdom from Betty’s alter ego.  

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Leukemia an uneasy rider…

Unknown-2Grasping, clawing thin air, holding her chest she weaves back and forth, side to side. A look of terror covering her face, showing blaring signs of confusion, her eyes wildly searching the very corners of our room. My chest hurts, I can’t catch my breath, somethings wrong honey, something is really really wrong! Am I hot? Do I feel hot to you? James? James? James I can’t hold myself, where are you? Somethings wrong, somethings really wrong! My stomach hurts, my stomach hurts real bad, James? Somethings wrong (speech beginning to slur)

In fact something was wrong, very wrong. I was alongside of my wife as she jumped straight up from what seconds earlier had appeared to be a sound sleep. Starting a downward progression, a health scare that would for a few moments challenge my ability to cope, compensate and help this sweet woman through the opening moments of what would become a 12 hour medical journey.

Me: Babe I am right here, right next to you, what is wrong?

Jacy: I am hot, I don’t feel good, something is wrong (speech slurring), where are you?

Me: I told you I am right here, do you need me to call 911?

Jacy: No, somethings wrong, somethings really wrong, I don’t feel good, my heart is beating out of my chest and I can’t breath! Somethings wrong (repetitive answering)!

At this point Jacy began slurring her words even more! Her eyes rolled around within their orbits and she forced herself into a tripod position that was wobbly at best.  I began to panic! My head was spinning, what do I do, do I call 911, what is wrong with her, she isn’t speaking to me, holy shit is she dying! It felt like an eternity, sitting there staring as my wife’s body began shutting down, doing things I had never seen it do before. I wanted to open a window and scream for help! For some reason my phone wouldn’t bring up 911 and every time I tried my fingers fumbling from shaking, inadvertently locked the device, rendering it useless until I could hold one digit still long enough to manipulate the finger scanner. I by all accounts upon reflection was that guy! A swearing, stuttering completely useless basket case.

Then something happened. A recollection, a memory, a proverbial light bulb flashing over my head like a Las Vegas strip sign! And like the flip of a switch the realization struck me: I don’t need help! I am the help! Yep that’s right folks, through the heart pounding, fear laden panic of watching my woman disintegrate physically and mentally I recalled a somewhat important fact. I know what to do! I am trained to deal with this very situation! Holy shit! HELLOOOOOOOO MCFLY!!!

That is right, apparently when the patient is someone you love, that one person you have pledged your life too, the human being you swore in front of God to love till death do you part, you tend to forget important information like, well uh like you are a firefighter with 18 years experience as an EMT! You have evaluated, and helped prepare for transport more sick people than you care to remember! Triaged, treated and transported every type, diseased, ill, injured, trauma, heart attack, respiratory distressed, overdosed, ingested, kidney failure, cancer ridden, etc… human being on the planet! So why on earth are you dropping the ball on one of the most valuable patients ever to be in your presence?

And like that the light switch flipped! Questions changed, responses changed, and within a few quick seconds, just by shutting off my emotional side, I had determined my wife was either in the midst of a possible life altering allergic reaction to the Neupogen injection I had given her not more than 50 minutes earlier or she was mid TIA (Transient Ischemic Attack) Layman’s terms; a minor stroke! She met all the criteria for both! Confused speech, altered level of consciousness, rapid heart rate, pale, cool diaphoretic, loss of muscle function to a side of her face, blotchy redness on the chest and involuntary muscle movements. Yep mirroring symptoms to the point, one could have invariably irritated or influenced the other.

UnknownSo I did what any man in my position would do, could do, or hopefully would think to do. I threw her in our car and headed to the emergency room! Now hold on, before you put a hand over your mouth and yell at me through the computer screen: Why didn’t you call 911? Its simple math really. I live exactly 7 minutes from a level 2 Kaiser hospital. It took me under a minute to get her in the car. That is 8 minutes. It takes 1 minute to reach dispatch from my phone, another 30 seconds to dispatch our engine in combination with a responding ambulance for a ride out to my house that is at best 12-14 minutes.  After toning out the call it takes an average of 2-3 minutes for crews to look up the address and get out the door. That is a total of (rounding) 18 minutes to receive help. By the time they would have gotten to my house we were already in a room being treated. It was scary, it was risky, it may have been stupid on my part, and I would never under any circumstances pose that any one person take that risk upon themselves, but it was done, and we were in the ER, safe and sound!

Arriving at the hospital, she was wheeled into the waiting area where she promptly declared BATHROOM!!!!  Mario Andretti would have sure been proud at that way IUnknown-1 was moving when I passed that crowd (gratuitous Charlie Daniels plug). Sliding sideways into the first bathroom, Jacy began vomiting, and vomiting and crying. A very nice security guard came in and helped me take care of her, while the registering nurse took my word we were who we said we were and put us right into the system.  Within seconds we were relocated to the triage nurse who stared confused at my patient transfer rundown in regards to my wifes medical condition. Moving like a rabbit the triage nurse wheeled us into the ER and as we turned the corner it was obvious which room we  were destined as two nurses feverishly wiped everything down with disinfectant! (special germ precautions for Chemotherapy patients) Then as we drew closer my heart leapt with joy as I recognized the smiling friendly face of our RN (registered nurse). It was one of the moms from Jacys school. Jacy had taught her daughter and my wife was one of her favorite teachers. Truth be told her daughter is one of our favorite students! I say ours, because my wifes students are my students too. Over the years I have come to know most of them by name and when ever I see Jacy at work they all talk with me, give me high fives and generally bring out the dad in me! I am Mr. Jacy! They all make me smile, but some make me smile more than others and this little girl is one of them.

Things moved very rapidly, I helped where I could and stayed out-of-the-way when I needed too. Just as things began to slow down a bit another surprise walked through the door. One of our firefighters who works as an ER Tech was also on that night. It was fantastic to see his face, my fears were quickly calmed as now there were two people who knew us, knew my family and genuinely cared for my wife.

Thus began a long night at a Kaiser ER. Needles here, blood drawn there, chest x-rays, CAT-scans, blood pressure, oxygen, 3 I.V. bags of fluid, antibiotics, and the best damn treatment I have ever had at a hospital. I cannot emphasize enough how well we were treated! The on duty ER doc that night was funny, charming, with honest concern for our well-being. She was the kind of person you hope to meet someday outside of work to share a drink and a few laughs! I am forever in Kaisers debt.

12 hours later we walked out the back door. Ok I walked, Jacy shuffled. We slowly climbed back into our car, and drove carefully home. The final diagnosis? Undetermined, but it was narrowed down to either a minor TIA or an allergic reaction to the Neupogen.  A phone call later that evening from Jacy’s oncologist would confirm most likely the latter. Yep I still got it!

Returning to our house we walked upstairs, my goal was to tuck her into bed and watch her sleep for a while ensuring all was good. Apparently being up for 28 hours doesn’t agree with my aging body anymore because the next thing I know its 4 hours later and I am in bed looking at her sleeping peacefully. Getting up, I kiss her forehead, thank God for getting us through this day and say a little prayer for all who helped us the night before. Walking downstairs my mind cant help but ponder how many more times we will travel this road, how many more scares will we survive? How many more long sleepless nights will we endure? Then I realize, it doesn’t matter, because no matter how many more “times” there are, we will win in the end. Jacy continues to kick cancers ass and I will continue to do what I can to support that ass whooping!

Sleep or no sleep, fear of confidence, vomiting or solid good health, it really is as simple as that… There is no other option…

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A day in the Face of Leukemia.

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10 pm. Finally there is peace and quiet. I am alone with my thoughts. (not great company at times) I am…..exhausted. The children are all nestled in for the night, leaving me alone to rest, think, plan, and prepare.  Ok also to drink a nice cold beer…

These children, these genetic markers, fruit of my loins, incredible individuals who are searching, striving to understand what exactly is happening to their mom, taking my every moment with inquisitive thinking, questioning, testing my very patience. It is easy to forget they are not at a level to fully comprehend exactly what is going on with their mother. As each day unfolds and my fervor reaches pitch, they are unwitting victims to my own personal demise. A tossed bit of clothing here, an untended animal there, a room in disarray, teeth forgotten and hair occasionally not washed during the cleansing process. All lead me to instant eruption at times.

As my mind continually works at an ever rapidly processing pace, my inner ability to control or grasp a solid foundation of patience seems to crumble. It is not as though these little cherubs have truly faltered in any way, but more as though their little mistakes are magnified by worrisome frustration on my part.

A day in the life of the husband supporting a cancer patient.

Every morning I awake exhausted! My back aches beyond belief although I am beginning to feel this is some form of sympathy pain helping me relate to suffering my wife may be feeling. Breakfast is some delicious Javita coffee and a small bowl of oatmeal. Thankfully most mornings, the horses are already fed. Two of our “borders” in particular have become my barn angels. (Lisa and Olivia) Saving me from this chore as lately I just can’t seem to function with any repetitive, normalcy as the sun arises. After staggering around like a lost puppy looking for its master, I can usually get dressed before our children awaken wanting, no needing my utmost attention. During this time my mind is already checking off a multitude of things that may or may not need accomplishing before I abandon ship, heading off to be with my wife in the hospital.

After a short morning briefing the kids have their chore lists lined out, some laundry is done, dishes, washed, bathrooms cleaned, dogs taken care of and out the door I go to work a few horses that need to be on a daily routine. After completing this chore, its back into the house, showered, clean clothes, check in on the kids progress with their chores, hugs all around, a list of objectives to the oldest who is now watching siblings until my return and then off to Vallejo to be with my wife.

Easy enough, yes?

Walking through the door of room 5020 after saying hello to many nurses who know me by name, I lay eyes upon her, and begin feeling guilty. I still cannot understand why this is happening to her. This beautiful, vibrant, glowing woman, who by all accounts has never done a horrible thing to any ONE person in her entire life. It just doesn’t make sense to me. Why isn’t it me? Why hasn’t this awful disease happened to me? It would make more sense, I havent always been the nicest of people, I didn’t always care about others, their needs, their troubles, or problems. In my youth I was a very self-centered individual, who didn’t always treat people with the respect they deserved. But then I suppose life isn’t about who deserves what, as we see on a daily basis in the news, but for myself it just doesn’t make sense why this woman, this person who saved me from myself, this angel who puts everyone and everything ahead of herself, why it has to be her.

She is happy to see me! Like a prisoner is happy to see a loved one during their monthly visit. Trapped in a 15×20 room, with crappy food and lines pumping chemicals into you from all directions, one could understand the importance of familiar human contact. She proclaims her affection and declares how much she misses me, it makes my heart sink, yet fills me with joy at the same time. Sinking because I feel her lonely pain; surrounded by many but alone none the less. Yet to have someone who needs you, who loves you so much that after all this time together can honestly say they have missed you. Well it is powerful.  I watch couples these days fight over the stupidest things. Complaining in front of everyone, tearing down their marriage on a stage for all to see and it makes me sad. These people don’t realize the gift given by proclaiming their love for one another or what blessings are right in front of them,  focussing instead on the possibility that some grass may greener on the other side. Marriage is work, it takes hard work at times, but there is an old saying; you reap what you sow. I try daily to plant and fertilize my marriage and I believe it shows. It shows when I walk in the room and my wife beams at me with that million dollar smile. It shows when she grabs my hand, squeezing tightly and says; don’t leave me. It shows when she tells me she cant wait to be home so she can feel the security that comes with sleeping alongside her husband. It shows when I leave and all the way to the car I feel like part of me has been left inside that fifth floor room.

Jacy has cancer. I know she is winning this battle, but every time I say it, every time I write about it, it chokes me up. Jacy has cancer. My throat tightens. Jacy has cancer. My stomach feels sick. Jacy has cancer. My eyes become moist. Jacy has cancer. A dark cloud overhead looms like a storm waiting to throw lightening my direction. Jacy has cancer. I thank God the children don’t fully understand and only feel as though mommy is just on vacation in the hospital. Jacy has cancer, Jacy will always have cancer, Jacy has cancer.

Coming home, I am met by the many blessings of being surrounded by those who care. Nice notes, cards, letters of hope and understanding, dinners dropped at our door, the barn taken care of again and a multitude of additional support. But just as Jacy wishes nothing more than to escape her sterile cell, pulling needles from her veins to resume a normal life, I wish for her to be home, covered by the safety of these four walls, never having to travel this journey ever again.

Tomorrow she does comes home. The first few days are going to be rough as sickness, fatigue and living immunocompromised will be scary. But she will be home. In three more weeks she gets to do it all over again, returning to hospital, becoming reattached to chemicals that will save her life. Its a small price to pay to beat this evil demon, but then that’s easy for me to say as I am not the one fighting to survive. Or maybe its easy for me to say because it’s the only way I know how to deal. Placing things in categories and checking off  lists, one box at a time. The main thing is she is coming home.

So as I reach the end of another long day, I just want to say; Thank you to everyone, all of you, the kind words, the hugs that mean so much ( I love hugs, it’s the dad in me) , the smiles and great conversation. This is a fight, a fight we are going to win, no one fights alone and all of you have proven that to be true. Jacy is definitely not fighting alone because of all of you and standing by her side as her husband has been my absolute privilege.

Thank you for allowing me to make that happen..

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Leukemia’s house of horrors!

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Phase two of AML treatment. The beginning of ongoing chemotherapy or Consolidation Therapy (CT) as it is known.

So what does that mean? Quite simply it means that Jacy’s immune system has bounced back to epic proportions. But because the original treatment was a bombardment of all aspects of AML she was exposed to many different drugs that all had different jobs.  Thier goal was to kill everything, both good and bad! The nuclear bomb of cancer treatment! The primary drugs classes for this procedure fell upon Alkylating Agents and Antimetabolites.

Alkylating Agents: 

Alkylating agents directly damage DNA to prevent the cancer cell from reproducing. As a class of drugs, these agents are not phase-specific; in other words, they work in all phases of the cell cycle. Alkylating agents are used to treat many different cancers, including leukemia, lymphoma, Hodgkin disease, multiple myeloma, and sarcoma, as well as cancers of the lung, breast, and ovary.

Because these drugs damage DNA, they can cause long-term damage to the bone marrow. In rare cases, this can eventually lead to acute leukemia. The risk of leukemia from alkylating agents is “dose-dependent,” meaning that the risk is small with lower doses, but goes up as the total amount of the drug used gets higher. The risk of leukemia after getting alkylating agents is highest about 5 to 10 years after treatment.

Antimetabolites:

Antimetabolites are a class of drugs that interfere with DNA and RNA growth by substituting for the normal building blocks of RNA and DNA. These agents damage cells during the S phase. They are commonly used to treat leukemias, cancers of the breast, ovary, and the intestinal tract, as well as other types of cancer.

So as you can see these are some pretty harsh buggers and can make a person very sick while performing their duties. The problem is even though they kill everything and Jacy’s counts have rebounded with astounding veracity there still could be stragglers. Evil doers hiding, lining her sacred DNA, waiting to join up forming an alliance, then pouncing on her fresh new unsuspecting immune system!.

Because of these sneaky little bastards we are in Consolidation Therapy. So what is Consolidation therapy(CT) ? Well I am glad you asked, Consolidation therapy is:

Treatment that is given after cancer has disappeared following the initial therapy. Consolidation therapy (CT) is used to kill any cancer cells that may be left in the body. It may include radiation therapy, a stem cell transplant, or treatment with drugs that kill cancer cells. Also called intensification therapy and postremission therapy.

So as you can see Consolidation therapy (CT) is very important. It is the clean up crew of cancer treatment. The crew that cleans up the stadium after a ball game. The squad that ensures a scene is all clear after a major crime. The Firemen that perform salvage and overhaul after a fire. The-oh well you get the point.

Jacy’s CT consists of Cytarabine. Now one may think WHOOO HOOO, only one drug instead of 4 or 5! But let me tell you this one is just as evil as the rest. You see when taking Cytarabine you must first be medicated with pain and anti-nausea medications! Because if you aren’t, hello toilet! Watch me steer the porcelain bus! Pray to the Sloan valve gods! Kiss the tile floor!  To make matters even worse some patients will develop a fever, body rashes, red eyes, and of course exhaustion.

During treatment your doctor will test your blood on a regular basis. Not just to see if Cytarabine is wiping out any stragglers but checking your kidney and liver functions ensuring it’s not killing more than it should.

But hey whats a little vomit, itchy skin, red eyes, exhaustion  and possible kidney damage when it means you will live! Right! Am I right?images-19

Luckily enough Jacy only had a few of the symptoms and is doing remarkably well! She is going to beat cancer, we are witnessing it first hand. She is going to become stronger and live a long and happy life.

So how do they administer the CT treatment? I am so glad you have inquired!

It is done through a port placed just under your skin. Since she has to under go three-week long treatments over the next three months in the hospital, instead of placing a Picc-line (acronym for Peripherally Inserted Central Catheter) into her arm every time she comes into the hospital an out-patient surgical procedure is performed to place a small port (PowerPort) just under the skin for easy access to a vein for administering drugs. (see picture)port.illustration220px-Portkatheter_Röntgen

On Monday we arrived at the hospital at 7am for admission. Jacy’s surgery was scheduled for 11:30 and by 1:00 she was wandering back out into the lobby. Procedure finished, right side of her chest numb, black and blue and swollen. She was supposed to start chemotherapy at 3pm but by 5pm we still had no room available as the hospital was full.

Around 7:30pm a room finally opened up, we got settled and lucky for us two of Jacy’s favorite nurses where on and had been assigned to her for the evening. Watching her start the pain medications and anti-nausea drugs, we knew it was going to be a long night.  Jacy felt I should go home to be with our children, and like a good husband I did as I was told; but only because I knew she was in great hands. Kissing her good night, looking into her gleaming eyes, little did I know the hell she would go through not more than three hours later.

0800- Jacy calls me gravely voiced and sounding weak; asking if she was ok; she says no. You see the PowerPort site was so swollen and inflamed no one could make contact with the palpation points to locate the insertion site. They grabbed it manipulated it, poked at it trying to insert the PowerLoc infusion device and nothing. Now imagine 12 hours earlier someone cut open your chest in two different places, inserted a device through one opening just under the skin then fed a line down into a vein at the other insertion point, then sewed it all up and sent you on your way. Now pain meds have now worn off, it hurts like hell and people are grabbing it, pulling on it, doing everything they can to stick a needle inside of this bruised swollen section of skin! Not maliciously mind you but trying their very hardest to perform this manuever quickly because underneath this swollen, inflamed area and little plastic device lays a 146 pound woman screaming and crying in pain! Proclaiming to all that will listen this pain is worse than childbirth! (that is saying something)

Both of Jacy’s nurses were crying too as they both love my wife and the thought of her hurting was crushing them inside. One nurse refused a doctors suggestion of going straight into another vein to start the procedure because she knew Cytarabine had a high probability of collapsing the vein at insertion point. They were wonderful advocates for my wife. After four failed attempts over a few hour period, additional pain medications and a lot of prayers, one of the nurses asked Jacy if she thought she could bear one more attempt. Through gritted teeth, screams of pain and sobbing tears from all involved they got it first stick. Chemotherapy started.

The nurses all met with management to implement some changes in regards to the insertion of the PowerPort device. The Powerport device is usually inserted a few days prior to the patient receiving treatment. This allows the insertion site to recover, swelling to diminish and a healing process to develop a good strong foothold before someone pokes it with a needle. Through the dissipation of swelling the palpation points are also easier to locate. It came about that all patients with same day insertion will have the adjoining PowerLoc insertion device put into place. No more torture sessions for patients to start Chemotherapy.

Today Jacy is doing much better. First round is going very well and she feels like a prisoner trapped in a room. At least this time she wont be trapped there for 21 days.  She comes home on Saturday night or Sunday morning. She will be confined to her room until her white cell counts rise to normal levels. She will be extremely immunocompromised. She will be extremely nauseous, she will inevitably become a tad bit cranky, but she will also be one step closer to beating this disease. One step closer to returning to a normal life, one step closer to seeing her students and one step closer to placing this chapter of her life in the books.

She will have kicked cancers ass.

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Random thoughts on life and Leukemia

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Last night while gazing upon the stars at 1 am after our 5th medical response in a row my brain began reflecting upon life, its crazy highs and sock you in the gut lows. In a matter of 40 minutes myself and our crew had lent assistance to a wide generational swath of our local society.

From devastating self-destruction both mentally and through chemical intervention to an actual emergency need in conjunction with a health care system abused by those neither willing nor able to understand its legal ramifications, the resources lost, nor the world that actually doesn’t revolve around them personally. A true sampling of consensus within a short period of time.

Becoming judgmental is an easy undertaking, fighting the urge to prejudge individuals upon first encounter is hard. Being a fireman the communities trust is put in our hands to always do the right thing. See people for who they are not what they have become. We are allowed glimpses of people’s lives that would otherwise go unnoticed. That is a large responsibility. Some days it weighs heavier than others on my heart, as my eyes witness these revolving cross sections of our society I go home upset or unhappy with what I have seen. Thus the judgmental aspect forms and memories that cannot be erased etch themselves into my psyche permanently  like a scar for all to see, left for me to pick at from time to time for no other reason than because it exists.

Staring into the nights sky, pondering what it all means, fogging up my brain. Reliving experiences from my life, candid moments, snap shots and like a Grisham novel this story is all sewn together with a fabric of revelation. Every moment finding a place as to why. Why it happened, when it happened and that it happened to me. There is a meaning and the meaning determines not just who I am but WHAT I am or have become. The people in my life I hurt, loved, helped, shared experiences with and what I learned from each and every individual who has crossed my path, set eyes upon my craggy face.

Shaking my head as if my brain was an etch a sketch hoping to erase an unfinished drawing, I can’t lose this feeling that all is not enough.  There is more life to be lived,  we are trapped in a stereotype of how life should be lived and for the most part succeed out of learned habit. But what if there was more? We have one life to live, we are not guaranteed any days here on this earth, trust me I have held the hands of many who were cheated, watching those last moments fade away in their eyes, lives unfulfilled, potential disappeared, erased forever.

Yet the world still turns, it feels no repercussion from human losses. Sun rise, sun set, society still moves, people still awaken, babies are born, buildings erected, mountains moved and society trudges on. Eventually who you are or were, is destined to become a faint memory or forgotten. It is life and life goes on.

I live a life of fear. Fear that I will never be good enough, fear that my children may perish before me, to be forgotten before they had a chance to become something, anything that leaves a mark no matter how small upon this world.  Fear that my wife may lose this battle with Leukemia at some point, leaving sadness and despair to rage within our family. Fear that I will perish before I find what this longing is deep within my heart that whispers; no screams at me there is something more. A mark, a substantial mark that I am supposed to leave upon this earth. Complete narcissistic view I know, yet it lingers deep within my soul. Maybe I am already leaving that mark and just don’t see my hand to spite my face? Fear that she (my wife) will know the pain of losing me, carrying an ache, sorrow and agony with her for the rest of her days.  Fear.

So I stare up at the stars and I wonder why? Why do I feel this way? Why cant I be happy with the here and now. Why I worry about how much time I have left or lack there of? I wonder how I can be better, a better father, husband and friend, a better co-worker, I wonder why?

Remember those days when you felt as though you had the world by the balls? There was nothing to stand in your way, no mountain you couldn’t climb, no one was going to say no to you! Do you remember? I do.

If you don’t understand the feeling I am referring too, just look at your child. Not your self-absorbed teen ager; your child. 1-9 years of age. Before society, television and friends ruin their ability to think on their own, be creative beyond our walled off perceptions. Give a child an adult sized problem, one requiring and answer and you will see imagination, inspiration, out of the box thinking and a confidence just waiting to be tapped. But as they grow older that ability goes away through structure, through habits neither right or wrong learned from observing ones elders. That feeling you had as a kid of being able to daydream all your problems away. To look deep into a problem and come up with the craziest most unorthodox suggestion known to man. To be confident.

That is the way I feel about Leukemia in my life. I don’t have Leukemia, but when my wife suffers, I suffer, when she hears news both good or bad, my emotions grow raw with glee or anger. I refuse to hear the word no. There has to be a yes to this struggle. I refuse to believe that my wife wont beat this disease. I refuse to listen to statistics and the medical dribble that often accompanies those numbers. And to date she is winning, we can see the finish line and victory looks great!

I feel as though my wife has the world by the balls! That she has another opportunity, showing the world she is unbreakable. That feeling has inspired me, left me in awe of her positive attitude, her out of the box thinking. She unknowingly has allowed me to reconnect with my inner child. There are no problems that cannot be tackled without imagination. She has left me finding the positive, loving all who surround me, laughing just a little bit harder, saying thank you a whole lot more and remembering that life is a gift to be cherished. I kiss her on the head every night while she sleeps, the smell of her skin soothing my soul. She has and is all I will ever need.

And so I am left staring at the stars, at one in the morning, wondering if there is or could there ever be, more………

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The Face of Leukemia 2014

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2014 Day 1……..

364 days to live.

364 days to wake up every morning, count our blessing and live. 364 days to write a new and exciting story! You see my dearies pontificating New Years resolutions involving the standard fare of weight loss, higher education, finding love, spending more time with our children, adding onto the house, finding a better job, saving more money, vacationing more, visiting family and friends and so on and so on is just not my style this year. But watching my wife live is.

364 days, until I can count 365 more days of life lived, 365 days written into the history books of our family. Cancer has this funny way of cheating you from a reality lived by so many others, changing the way your life story is told.  Cancer also has a way of sticking in your craw like an annoying persons laugh or an itch you just cant scratch.  It’s there, no one else can see it, no one else can feel it, only those who have it, or love someone burdened by it understand, yet the rest of the world just goes on with its business of worrying about resolutions for which a majority will sadly never achieve.

A new year a new fear.

We are winning this battle! Jacys superwoman body has done incredibly well! The last bone marrow draw showed no signs of Leukemia swimming in her blood, lurking in the darkness like an evil monster. Consolidation therapy starts on Monday and she will begrudgingly return to the hospital for 5 days of chemotherapy.  Her strength is back, she is feisty as ever, feeding horses in the morning and an occasional walk in the afternoon! (rumor has it she was spotted jogging on a levee, but its only a rumor) The next round of therapy will knock her down again and from what we understand recovery gets harder each time she finishes a session. She will come home weaker and a little sicker. Chemotherapy is not for the light-hearted, these patients (my wife included) are my heroes as I have witnessed the strain it places on the human body.  Yet Super Jacy has never deterred from her mission. Kicking cancers ass one cell at a time!

A fear still remains though. What if it (Leukemia) comes back? What if her white blood cell count doesnt recover? What if she catches a common cold during these periods, (something that could kill her) what if?????? These are fears we will live with for the rest of our lives.  Every cough that arises, every sniffly nose, every fever, everytime she feels run down, for the rest of her life she will need to go have blood drawn and see the doctor. 3 more times to go, 3 more week-long sessions, three more weeks of hell.  In the end, a small price to pay to live. Jacy promised me she loved me enough to beat this, she is keeping her word.

Day 1…. Today began our 2014 journey and Jacy spent it the only way she knew how.

It was a day filled with visiting friends, making her children laugh, planning a birthday party for her son and wondering whether or not to shave the small patches of hair fighting against the laws of chemistry. Little strands hanging on for dear life, trying their very best to make my wife look like a chia pet. Biggest decision of the day? Shave the head or let those little hairs grow only to meet an untimely death in 4 days.

With the beginning of a new year I wonder about the thousands of other spouses, significant others, and children all living and loving someone close to them with Leukemia. I worry about the ones who struggle to support their loved ones without the means of expression such as writing brings to me.  Do they lay in bed at night afraid of the darkness, wondering how long, why them, all while scooting a little closer to the one they love just to feel their body heat. Are they ok, do they know its ok to feel the way they feel, can they find peace? I am sure they do and I am just rambling, but its in my nature to worry about everyone and everything.

So welcome 2014! I welcome you with open arms (and Betty’s arms are plenty big enough) for the hug of a lifetime! 2014 we hope you are filled with many misadventures, happiness and love! But most of all 2014, we pray you don’t leave us reeling like your bastard predecessor 2013 did! But if you do, not to worry, the story you tell will be interesting none the less…

364 days… The story begins right now…

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The Face of Leukemia- Just look at me, really its ok.

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Bald is beautiful

We’re all born bald, baby. – Telly Savalas

I collect hats. It’s what you do when you’re bald– James Taylor

It’s a great event to get outside and enjoy nature. I find it very exciting no matter how many times I see bald eagles –Karen Armstrong

What’s so brave about being bald? I’ve not fought for my country or found the cure for cancer I’ve just gone out without my hat on! -Gail Porter

You know it is interesting to me this stereotype associated with being bald. If you’re a man, it’s obviously genetic. Poor you, trudging through life with the same cranial cul-de-sac formed upon you as your father and his father before him. Unless of course you are a skinny, emaciated man then you must obviously be dying from some rare form of cancer. Or you just happen to be Billy Corgan jr. or Michael Stipe then ROCK ON DUDE!!! BALD ROCKS YEAH!

But what if you are a woman? Sinead O’Connors’ shiny domeness was by choice, a political statement against a traditional view of women. (well-played I might add)  But what if you don’t have her “balls”, what if you are brought screaming and kicking into baldness? Seriously think about this, in our society a woman unfortunately is judged the moment she walks into a room. Not for her sunny personality or Mensa card-carrying IQ. Nope, she is judged for her looks. Make-up, clothing, body weight, eyes, breasts and of course her hair. That is right, men will either ogle a woman within the first 30 seconds, ponder ogling her over the next 30 minutes or write her off. In the mean time women within the room will smile to your face and talk shit the rest of the evening. Sorry ladies its true, I have witnessed more than my fair share of character assassinations based on any one of the above criteria not being met to perfection on more than one occasion.

People get real comfortable with their features. Nobody gets comfortable with their hair. Hair trauma. It’s the universal thing-Jamie lee Curtis

So imagine, carrying this social pressure your entire life only to wake up one day without one of these aforementioned 6 major sight line musts for survival. What would you do? How would you behave? Would you curl up into a ball and cry or say fuck it and march boldly into the world claiming my hair will not define me!

Jacy lost all her hair on or around the first week of December. It has gone from sadness to a fun playful experience then one of empowerment! She has come to terms with this loss, worn a few wigs to help with a social awkwardness associated with a woman not 1474617_10153673039070221_12575420_nhaving hair, and in the end decided that 9 times out of 10 bald is beautiful.

Now while none of us can say with certainty what we would or would not do as it has not happened to us personally, I am proud of my wife for taking this strong-willed, brave stance. She does indeed have a perfectly shaped head and I think she is hot, hOT, HOT bald! Really, like she could never have hair on her head again and it would be ok with me! The woman is drop dead gorgeous! Throw in her stunning smile, caring heart and amazing personality, well ladies and gentlemen we have the trifecta of baldness!

But let me say this before I drone on too much about the woman I love and her shiny new dome. When we are out in public.

I see you.

I see when you stare at her as though it is wrong for her to be bald.

I see you when you look behind her and sigh as though you just cant relate. It’s ok, we understand if you cannot, but please don’t be fake.

While eating in a restaurant I see you staring, with your smart ass smirks, elbows flying into each others ribs while walking by outside. Moron it’s a window, if you can see us I can see you!

My ears may be 47 years old but your mumbles are not quiet enough. She hasn’t lost her breasts and even if she had you shouldnt be staring trying to figure it out so don’t look, she isn’t skin and bones so quit guessing her weight, and yes she lost ALL her hair, so stop wondering about places you cannot see and how much wax is being saved.

If you are going to stare don’t look ashamed when I make eye contact with you, walk up and ask questions, we are always open to discuss Leukemia and its effects upon our lives.

When you do have something to say, dont automatically behave as thought this is her last day on earth. The news media has ruined the public in regards to behavior when confronted with a bald woman. Smile say hello and ask away with glee! We are happy to be here and so you should be as well. Who knows the bald woman you talk with may have alopecia, thusly not really needing you to pray for them, unless you feel that will raise hair follicles from the dead?

If you have had a couple of drinks, your inhibition is lowered and you feel as though it is the perfect time to act like an ass with rude or inappropriate comments about this beautiful human being or any like her that may be in my presence, understand this, I WILL  make it the very worst night of your life. I promise..

When my wife takes her wig off in the middle of a store and it shocks you, just chuckle. It is funny, we laugh about it all the time and will laugh with you I promise! But if you can’t chuckle politely than at least close your mouth, that looks funnier than her bald head and we would hate for you to feel bad about yourself.

Remember, people going through chemotherapy are no different from you and me. Most of them have an incredible sense of humor, some have survived the very worst of treatment, others are still dealing with an inner loss while a few are looking at just making it a few extra days.  These people, these priceless examples of survival and strength, still need to laugh, love, talk, and feel. They still need to be accepted as the very same human beings they were before cancer. They know they are not the same inside and nothing will ever change that, but what they don’t need is to be reminded through ignorance, insensitivity and callousness.

Look into the face of cancer, tell me what you see.

I see LOVE…

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The Face of Leukemia- A day for surprises…

 

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What does it mean to “touch” a life?

Everyday we walk this earth, worrying about our “in the moment” crises, complaining about our “bad” days, struggling to get ahead, feeling father and farther behind. But do you know what it feels like to actually touch someones life? To be that moment, that bright and shining star leaving someone wanting to see you again, yearning to feel the warmth your presence brings. Do you?

I believe everyone does. I believe every single person walking the face of this earth is just what I described to someone. Maybe to more than just one, but at least one person in your life feels that way when YOU walk through the door.

It becomes very easy to forget what our presence can mean to people in our lives. As I previously stated life itself does have a strange tendency to get in the way. But what if we could look outside ourselves for just a minute? Have the ability to look back upon our lives feeling the emotions within people surrounding us. Know in that moment of weakness leading us to complain about life, while feeling down upon ourselves that those moments are ok, but in reality are really nothing more than a  waste of our energy.  A waste of our precious time.  What if we could do that before we leave this earth? Before it is all recounted upon the lips of a friend or family member without us ever knowing?

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Today I stood by while my wife was mobbed by students at her school. They looked like puppies held at bay as we rounded the corner onto a black top designed for play. These children lined up into perfect rows, facing their teachers. Until one noticed a look of surprise cast across another’s face, and as most inquisitive minds do, turned to see what caused such a shocked reaction.  It started slowly, a gasp, then murmurs of Ms.Jacy here, and another there, until they all were screaming it loudly! Ms. Jacy!!!!! MS. JACY!!!! Not knowing whether to run or stay in perfect formation the looked; “like puppies on a leash”. Until they could no longer contain themselves and all it took was one puppy to break free from the constraints of rules. They came fast and I saw a smile arise from my wife (Ms. Jacy) and emotions shared from these children that said to me; this is her moment. She now knows…

This was the moment as a human being you hopefully realize you mean more to the world than your little daily problems will allow you to believe. A moment when you stand back and let a wave of love overcome you. A moment that most people won’t realize until its to late.  Watching my wife smothered in love from both students and co-workers today left my heart aching with joy. At one point while speaking to some colleagues she began to cry at how much she missed them all, how much she loved her job, her classroom and what it meant to be a teacher at Dixon Montessori School, surrounded by colleagues who felt as she does towards these children.

She cried and I stood aside; normally I would have swooped her up, protected her, whisking her away, shielding her from emotional pain. But in this one moment, I just stood there, gulped down hard as to not look weak and let her friends, her co-workers surround her with love.  This was her moment of clarity and I prayed she was, for a second standing outside her body to see, just what she means to these kids, these parents, these friends.

We left after roughly 30 minutes or so, Ms. Jacy becoming increasingly exhausted. As we walked through the campus, several children grabbed at her sweater, looking for hugs, looking for a smile, looking to tell her they loved her, missed her and couldn’t wait until securedownload-9she returned to them, healthy and whole.

It was in fact the longest walk ever, back to the car.

Cancer sucks, cancer changes your life forever. Our lives together will forever travel a new and different path aligned with Leukemia but together will win this fight.

As you head into this holiday, who are you a shining light for, who waits to see you smile, what family member(s) want nothing more than to spend time with you? Who makes a difference in your life? Who can you not wait to see? What person(s) take up every moment of your thoughts because of the joy they bring into your life?

I beg of you, find out if you don’t know the answer to these questions. Dont waste time wondering, don’t wait until its to late to know.

Today witnessing the empathy and caring my wife has shared  with so many others, her passion for being a teacher and friend, that same love and emotion shared in return; just being a part of that experience with her, leaves me feeling very blessed.

Of course I already treasure the gifts she has brought into my life.  I know who the one person is that I yearn to see, that I long for, whom I cant wait to see walk through the door. The person who brings light into my life.

Just look at her smile, it says it all…..

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