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..

 

 

Unknown-3

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!

images-5

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….

 

images-8

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…

images

A day in the Face of Leukemia.

images-21

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..

images-1

Leukemia’s house of horrors!

Unknown-8

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.

1607085_10202956803467635_839888465_n

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

photo 2

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…

photo 1

The Face of Leukemia (December 18, 2013)

 

images-9

SSSHHHHHHHH

Do you hear that? It’s the sound of silence. Normally right now I’d be cozied up in my captain’s chair, shorts on, comfy t-shirt, freshly showered with a hot cup of tea off to my right. Then carefully place my iPhone ear buds into place and with the stroke of a finger, “classical to study by” gently lulling my senses, firing a few neurons, stimulating a thought process into action.

But not tonight.

Tonight there is not a sound echoing through the corridors of our home. Four children off to sleep, two dogs snuggled up to a few human blankets while one stands guard at the front door and the other ones at my feet. I’m still in my shorts, we are out of tea and the silence is just to grand to ruin with any music of any kind. Yep pretty nice..

All Neurons firing properly.

A moment of pure heaven like this seems the perfect time for a bit of reflection covering the last 29 days.

  • Iran agreed to limit their nuclear development program
  • Chinese Spacecraft Change 3 safely landed on the moon
  • Paul Walker, Ray Price, Peter O’Toole, Eleanor Parker and Jim Hall all passed away.
  • Nelson Mandela as well walked towards the light.
  • Hanukkah has begun and Winter solstice is upon us.
  • School shooting in Colorado
  • Hospital shooting in Nevada
  • Oh yeah and that whole my wife was diagnosed with Leukemia starting a scary fight for her life.

Oh hey that last thing! Yeah funny thing about that last one there, because of that little bullet point I knew none of those things above it happened. Can you believe that? It appears as though my full focus was on one thing and one thing only. Apparently there was neither time nor wanten for me to flip on a television and search out these wonderous revelations.  Seems as though reading, learning and living a life of leukemia can really skew a fellas sense of priority.

Case in point; just prior to cuing up the old blogger keyboard this evening my finger (on its own of course as I would never) clicked upon the Yahoo banner and up popped all these top headlines Yahoo believes I should know about. Amazingly enough not one of them held an accurate title as most were standard stretched truth “catchlines” instead. It also seems as though most stories revolve around “celebrities” as if our lives would wilt into the unknown without our latest gossip over Kim K or what the Jackson’s are suing over in regards to their dead iconic son.  What wonderful philanthropy has lofted Brad Pitt to sainthood and why the hell is Angelina Jolie 98 pounds? So it seems as if by worrying about the effects of Leukemia upon my wife and our family, worrying about the hundreds of thousand United States citizens suffering from Leukemia and other forms of cancer every second of every minute of every day. My thought process is severely flawed. According to polls and data it appears the American people don’t care, but what they do care about is the Real Housewives of some dumbass city? Or perhaps how millionaires actually need assistance finding a date! Really? You are worth millions and you need to waste your money using Ms. Smartypants to find someone for you? COME ON! Not buying it! Then of course there is Kanye laying it all on the line, like a police officer or soldier, risking his very life to entertain us poor lowly citizens.  Yep over the last 29 days I got it wrong…

I always knew being so wrong would feel so right!

So here I sit very content with these current choices as my wife sleeps soundly. Gone are the night sweats for now. No more needing to have me fetch a pain reliever at all hours of the night. Gone is that horrible aching pain associated with a feeling of her bones exploding while creating new life within her blood stream.  Gone is the never ending headache. Gone is also her hair, all of it, everywhere, seriously, ok except her eyebrows which so far is pretty cool. But man can you imagine waking up one day to find all your hair is just gone? Can you?  But anyways you know what isn’t gone? Her beautiful smile.

Jacy’s smile as I have written in the past is one in a million. Leukemia has not taken her smile from her face. She wears it proudly each and everyday. Leukemia is keeping some of her energy, which is to be expected, but even that is a battle she is slowly starting to win!

We met with Dr. Truong today and we still have a long road to go with 3 more consolidation therapies planned. (One week a month, for three months in the hospital for chemotherapy) We are also being referred to Stanford for a possible bone marrow transplant. Once at Stanford more data will be in and all our options will be revealed.  But in the end, we are way ahead of schedule, her white cell counts are through the roof and the last marrow draw showed no immediate signs of Leukemia! We are beating this monster handily! Wait for it, wait for it, YES everyone that means we ARE Kicking Cancers Ass One Cell At A Time! Ok not really we but she…

So in the end I think I will keep the television off.  In the end it appears that maybe just maybe whats going on around me, in my personal life might be a bit more important than whether or not Mylie Cyrus’s life IS a wrecking ball.

And at the end of the day, I think I’ll just sit here, relaxed, enjoying these tiny moments knowing the woman I love is sleeping peacefully and because of her will and tenacity I get to enjoy her for yet another day..

IMG_1729

 

The Faces of Leukemia. Today

 

1468816_601458016570714_706201145_n

 

Today the faces of leukemia came from far and wide. Gathered in a small gymnasium to help support a teacher, a mother, a wife, a friend.  They came from church, a walk on a warm Sunday afternoon, they came from the store, Christmas shopping, from watching the football game, but they came. They came to be tested, a simple DNA swab of the cheek looking to be the next bone marrow transplant match!

Today the faces of Leukemia looked me in the eyes. Some cried, many smiled, almost every one of those faces hugged me. People I have never met, people who know people, who know my wife, people who know people, who know other people who know my wife. People.

Today the faces of Leukemia were happy, excited, the way one is excited at an opportunity to win the lottery and  in an offhanded way they did have that chance. Becoming a bone marrow match is truly (in my opinion) an honor. One bestowed upon a “hero”. Because that’s what you are once chosen. A Hero! You now have the ability to change someones fate. Helping save a life simply by donating something you have matching something they need to survive. If that isn’t heroic then I don’t know what is!

Today 193 people made it into Blood Sources registry! ONE HUNDRED NINETY THREE new members of an elite club, praying they are chosen to receive that call! They may never get the call but like winning the lottery even though the chances are slim, you can’t win if you don’t play! And play they did!photo 3

Today the faces of Leukemia continued to come and go, many I knew personally, more I did not. This day, this Sunday in a small school gymnasium, I hugged more people than ever in my meager life. Each and every one of them who asked or just greeted me with a hug received the very best hug I could give. It was least I could do to say thank you on this day, today.

Tonight my heart tonight is overflowing with love.  Emotionally spent, tired, typing this is extremely hard as for once finding the right words to describe these feelings is challenging. My family is like everyone else’s family, we work hard, go to school and church, we donate when we can and always try to help our fellow neighbor. We are nothing special by any means. But today it felt as if my wife was a rock star! She has always been one as far as I am concerned. But I guess our little town thinks so too! So humbling, so amazing, so inspiring, so much love and admiration held for everyone who helped run our bone marrow drive along with every single person who took time from their day to come down.photo 1

Today when we opened the doors at 0900 and started setting up I prayed we would get at least 50 people. 50 people would have been awesome, as 10am rolled around some friends came by and a few more trickled in. My sister was there working a table along with lots of personal friends and coworkers. Standing out front all I could think was dear lord just let us get 50 registered today please! I never ask you for much, I always ask on behalf of someone else, but please help me out today with at least 50 people joining this registry.Then at around 11 am it happened. Cars came in slowly at first then a little more and suddenly we were inundated with people from everywhere! Shaking hands and hugging people I knew, didn’t know, friends, family and acquaintances! They just kept coming and coming and it was, well it was, AWESOME!!!!

Today a community pulled together for one of its own and that person just so happened to be the woman I love, my best friend, my wife. Talking with a dear friend it came to discussion how amazing it is, we all live together, go about our daily routines, passing each other paths without so much as recognition at times and yet when one is in trouble we all head the call. We all band together to protect one of our own and even if you don’t know that person, you may be friends or family with someone who does and that’s good enough for you. Now they are one of your own as well.

Today talking with all the wonderful people of this town it amazed me how true that last statement really was, as through these conversations I knew people in passing. As friends of friends, as family members of other family members, and in realizing this just how connected we all really have become. A community. Six hours came and went in a flash. It was astounding. Reporting home to my wife who was surrounded by close family and friends, she sat in awe of all the fuss. But to me it makes perfect sense. We all touch someone in our lives, some of us are fortunate to touch many people either in spirit or through deed. Jacy is one of those people, she shines brightly on all in her life. She brings a joy and happiness to those around her that is hard to deny. She cares about everyone, is passionate about her students, and loves her family. She is Jacy.

Today I saw the true meaning of community. Today we may have saved someones life.  Today I felt love and compassion on a whole new scale. Today I came home humbled by it all. Today I thanked God for answering my prayers.

Today, is the start of tomorrow. Thank you all for giving me that…

Tonight I will sleep quietly next to my sweet wife, wrapped in the warmth of every single hug I received,

Today.

Still kicking cancers ass one cell at a time!

photo 2

 

 

The Faces of Leukemia (December 14, 2013)

images-3

My face….

Its midnight and I can’t sleep. Facebook says: write something…. But I can’t, not for lack of inspiration but because my writings are more than Facebook can handle, the emotion, my feelings, inner torment. These feelings take more than a few lines to describe, more than a paragraph to sum up into a neat tidy little package. These yearnings, longings, fears, unknowns, hover over my head. They are kept at bay most of the time, squashed into remission by a steel will and optimism. Yeah optimism. The problem with optimism for myself is I am a natural pessimist. The person who says no first than after careful consideration reconsiders my response. Some would call it a natural negativity, I call it lessons learned through life experiences.

Why cant I sleep, what is tugging at my brain causing fear to paralyze me in bed with the light on? Waiting, no, praying the monster under the bed doesn’t come out to play?

It is the darkness.

With darkness comes silence, with silence comes thought, with thought comes sadness and with sadness comes fear. Fear for control I do not have, fear for an outcome which I know not an answer. Fear one morning I will awaken from this dream or nightmare and find myself alone. Now being alone is not so bad, that is when you have someone to come Unknownhome too. Being alone brings peace, it allows you an ability to discover and rejuvenate your self-awareness. That is unless you are already comfortable in that department. Being alone should be by choice not by design. Being alone should never be forced upon you unwillingly, in a cowardly act or unforseen circumstance. In the end it doesn’t matter what it is,or how it happens, I am scared of being alone.. I am scared of losing my friend, my wife, to that bastard known as cancer.

I roll over in the night and she is there, even sleeping she lazily smiles at me with the brightness of a thousand suns. She holds me in a way that even I can’t explain. I sleep well because her rhythmic breaths sooth me so. A touch of the hand, a brush of the leg, a heavy sigh, they all lend to the comfort that can be sleep.  And yet now no matter how positive things are looking in regards to her health, no matter what is happening in our lives there will always be an unknown. The unknown is Leukemia and it will remain hovering over us for the rest of our lives.

How many days do we have? Is it a year, three, five, ten or twenty? What is the outcome Unknown-3and why can’t we know. Doesnt the cosmic powers that be, the holy heavens above know we have children? Doesnt anyone understand the importance of this woman seeing her children grow up, get married, have children of their own? Doesnt my selfish rant have some bearing on our future? Although ultimately, knowing might not make things any easier, bitching about it now in a rudimentary way is cleansing.

Darkness creeps slowly, with it sounds of others sleeping makes me inevitably jealous. Closing my eyes, squeezing them tight,  praying sleep will come quickly for exhaustion consumes my very being. Reaching out slowly, nervously grasping a small bead like switch, turning off the light, which instantly turns on a fear. With this fear comes loneliness, with loneliness comes a absurdity in regards to wasted time worrying about an emotion that shouldnt be there since she lays right beside me, healthy (as healthy as one can be) and alive.

I hate you darkness! My heart beats faster, my respiratory rate rises and it becomes easier each time to hate you more! You envelop me, smothering me like a blanket, restraining me as a straitjacket would.. Your coldness leaves me sweating, wallowing in ice water and before I know it I just can’t swim anymore. Darkness you take pleasure in ruining my life, keeping me from the sanity so many others enjoy by midnight. You are to busy feeding my thoughts and dreams waiting for the cloak and dagger game you play to emerge from the shadows. I hate you darkness, I god damn hate you..

So many are wondering what its like, how your life changes upon learning someone you love has Leukemia or cancer. The questions are normal and I love being able to answer them. I am very thankful it is me who gets to support this woman. I am thankful God found a job for me that falls within my realm of understanding. I am thankful that I can hold this woman up, and help her walk through the next 6 months of chemotherapy surrounded by nothing more than our will and love. Most people wonder if there is something more, if there is something better they should be doing with their lives. Not me, God gave me my job, its right in front of me and she loves me to the moon and back. I don’t want to disappoint her, I don’t want to lose her, I don’t want to be alone.. Selfish as it seems…

Fuck you darkness, I hate you, I hate you all to hell….

images-2

(Please understand this is just a rant. I am fine, we will prevail, we will kick cancers ass! I am not looking for sympathy or pity, but helping those understand some of the irrational thoughts happening when you are alone, in the middle of the night, trapped with  nothing more than the unknown and a crazy brain that refuses to quit thinking. It is after all why I write…) 

 

The Faces of Leukemia (December 12, 2013)

images-1

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

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

Tears flowed like rain….

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

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

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

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

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

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

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

Just as I quietly wonder why?

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

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

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

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

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

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

IMG_1924