fatherhood – Page 5 – They call me Betty

Keep Calm, its only been five months..

March 19, 2014 theycallmebetty3 Comments

(I apologize for not having written in a while, and though this isn’t the best, it hopefully will at least allow you all to know where I am at mentally)

Over the last 5 months plenty of time has passed for me to ponder the ramifications associated with cancer.

Endless days and even longer nights leaving me sleepless, cold, worried, angry, happy, sad, confused, and exhausted. Staring outwards into a twinkling nights sky, or straight down at my feet, lost, strained, asking God why. Ramifications indeed..

I have held a little boy who doesn’t understand why his mom needs to be gone all the time. One day at home then vanished into thin air, only to reappear 7-14 days later looking gaunt, pale and exhausted. This recurring abnormality in domestic motherhood just doesn’t compute in a 9 year olds brain. He needs his dad alright but there is nothing like the hug his mom can bestow upon him and the smile that shines on his face afterwards.

I have driven to games, practices, and rodeos alone. Elicited the help of many wonderful caring friends who dropped what they were doing without so much as a whimper to ensure my family was cared for in my absence. Helped (not well, but hey who said I was smart) with homework, read books and had books read to me, washed laundry, cleaned dishes, scrubbed floors, toilets, windows and walls. Watered flowers, cared for dogs, horses, goats and chickens. Folded laundry until 2 in the morning to ensure everyone had the right clothes for school, baseball, softball, hunting, etc…. And yes in a very strange bedraggled way I have cherished every minute.

Don’t get me wrong I performed all of those tasks prior to Jacy becoming sick as well, but they were shared tasks, and as with all relationships, some portions were performed by a certain partner because that partner excelled in one area over the other. Laundry has always been kind of my thing,(especially the folding portion) where as homework has always been Jacy’s (college grad/teacher and all).

Cancer has brought my children closer to me, helped me understand a little more of who they are as people. From seeing them handle this situation with their mother, to the inspiring abilities shown by the ones who have stepped up their games around the house during this time. Their interaction with the hoards of caring people stopping by our house or cornering them in a park, they have all made me proud. It has been a very hard, long frustrating road, but that road has also been filled with love, understanding, caring and commitment.

Cancer also filled my heart with fear. For every great moment I shared with our children, there was fear that Jacy would never see those moments. Fear our children would become used to their mom not being around, fear that she would not win this fight and the children would be left devastated, emotionless voids. Never remembering their childhood has one filled with great adventures, laughter, family and fun, but of the time their mother contracted Leukemia and perished. No child should watch their mother die. My fear is entrenched in losing faith. Something I have always had, a security which has kept me strong my entire life. Fear I will lose that feeling of always “knowing” what to do, how to behave, which direction to travel. Its faith which has kept me solid in those beliefs, it is my faith in God which has laid a foundation for me to build upon. Yet what if my faith eludes me? What then? More fear.

Up days and down days, days filled with forgetfulness, days filled with unexplainable irritability, days filled with an abundance of love, and days filled with dizziness, nausea and sleep. These are the emotional stages Jacy travels through. Highest of highs and lowest of lows. It’s a hard ride for me at times and it’s always an even harder ride for her. Yet each day is one day closer to the treatments being over, her body trying to heal itself and our lives returning to some form of normalcy.

She came home from her last treatment on Sunday. It was a day of joy. Only two more weeks of blood transfusions and testing, cumulating into a bone marrow draw somewhere during the third or fourth week. Many days ahead filled with more fears, watching her body decline time after time until her blood cells, both white and red begin producing normally on their own. Then waiting..

Fingers crossed, all goes well and Jacy will be able to finally claim to be cancer free! Over the next couple of years she will do her best to lead a relaxed, non stressed lifestyle and we will continue to pray Leukemia never returns.

5 months, five long and lonely months. I miss my friend, my spouse, the woman I love. To have her home and whole will indeed be a blessing. For five months I have slept alone many nights and like the true idiot I am, I never once slept in the middle of the bed! Always on my little 6 inch wide portion, leaving her side (which is 3/4’s the mattress) undisturbed. Out of habit or respect, I do not know, but wow, what an idiot! I really blew an opportunity to really stretch out and sleep like a king! It’s no wonder I never got any sleep! Oh well I digress….

A light is truly at the end of the tunnel, we can see it. Keep a prayer for us please, prayer is a powerful thing and I believe it helps keep my faith alive and her healing powers strong.

More to come, God bless you all…

A Man of Constant Sorrow

February 28, 2014March 1, 2014 theycallmebetty5 Comments

I am sorry I havent written in a few weeks…

Life events have a way of giving or changing perspective, enlightening or suppressing emotions, giving one pause or setting one free. This last week has been a complete disaster for me personally, leaving me overwhelmed, under the weather, lethargic, sad, and generally abandoned of feeling. Leukemia brings with it storied highs and tremendous lows, leaving its target families trying their best to muddle along somewhere in the middle.

The Saturday before last I toddled off to work as a very happy Ms. Jacy was home safe and sound, with children and a host of good friends checking in on her throughout the day. By noon a leukemia sized storm was brewing as she slowly began spiking a fever while feeling a tad ill. Refusing to admit something wasnt quite right (the hard-headed Cuban in her) she scoffed at my inquires and thwarted my meddling from afar. Finally after several rebuffed suggestions this woman of mine caved into peer pressure brought forth from one equally stubborn, very close family friend. Against her own better judgement she climbed into said friends car and headed for the hospital.

Not a minute to soon

Upon arriving in the ER, blood was drawn, counts determined to be low and her fever began spiking at 102 degrees. Jacy also began feeling a heightened pain around her Powerport insertion site in combination with redness and some swelling. She called to give me an update, and as I worried about her well-being Jacy promptly cut me short, telling me to stay at work, all would be fine as our friend was staying with her. What she didn’t know, what we couldn’t know was this was the beginning of a 6 day hospital stay that would bring more pain, tears, depression, anger, nausea, and hatred. All emotions geared towards a level of care, a lack of information and a medication induced headache that would rival even the most severe pain ever experienced in her life.

Ms. Jacy had developed an infection within her port, most dangerous considering it is a direct line to her heart. This brought an uneasy rest, fear and for a moment a feeling as though this just can’t go on any longer. Her days were filled with delirium, nausea and a much-needed (at times) drug induced sleep.

In a 6 day period I laid awake almost every night, worrying about her. Whether the infection was worse, whether or not the nurses (not chemo nurses mind you) had the right medications at the right time, are they administering blood transfusions at the right rates and have they given her the appropriate pre-meds prior to delivering the product. What are her plasma counts and if they are being taken into consideration why are her platelet counts so low? Yep every question I could think of running through my brain at all hours of the day and night. Throw in taking care of the children, making sure they weren’t scared or worried about mommy being in the hospital again, ensuring the littlest one Parker understands whats happening since it seems every time he goes to school and mommy promises she will be home when he returns, she is not. Throw in household chores and our ranch (including one escaped horse at 3 in the morning), it was indeed a long sleepless week.

Now as I have said before, I wasnt alone. My barn people came through as always, allowing me the freedom to only do a limited amount of chores, and the flexibility to leave at the drop of a hat. Close family friends were always on other end of the line, asking, pleading for anything they could do to help. And last but not least the constant array of giving people who have helped with dinner for our family. I am incredibly thankful for you all..

But my brain, that dirty little Dura-matter, neurological, master piece floating inside this thick head. If only I could shut it off for more than an hour, it would be grand. If only I could turn off the constant questioning, turn down the vast medical knowledge that spins so freely inside. Tricking me, scaring me, giving me panic attacks in the middle of the night! If only..

To sleep an entire night without nightmares, or wake up sweaty and cold reaching, feeling, to find no one there only to remember she is housed on floor two, room 213, alone, crying, sleeping, covering her head with ice and wondering why this is happening to her. Wanting to hold her, make it all go away, pretend it’s never happened. Is that too much to ask?

I am usually very positive, bringing the uplifting thoughts and prayers, trying my best to understand the meaning in any moment or given time. But lately it is getting harder and harder. Watching her cry, feeling her sorrow, asking herself; why me? Feeling utterly helpless. I am a fixer, it is in my nature. If there is a problem I fix it, I don’t wish to sit around and ponder a problem, cry over the problem, I just want to fix it! I can’t fix this! I can’t take it away! I can’t make her feel better about herself! I can’t help her to understand how beautiful she is, both inside and out! Cancer is chipping away at her confidence. Her kiss is still the same, her smile is still the same, her eyes still light up my heart! Cancer can’t possibly take those truths away! But it is trying very hard mentally.

So I can’t fix it, a hard pill to swallow, and with that, my sorrow continues.

I was raised to believe a good husband protects his wife, shields her from ugly, sadness and pain. That as her partner it is my job to carry this load. My responsibility to take her hand and lead her through this journey, minimizing the painful effects, bearing that burden. But what you don’t know, what you don’t understand until you are lying in bed with a million medical “what if’s” running through your head is Cancer don’t give a fuck how you were raised. Cancer doesn’t care what your ethics are, or the belief system by which they are supported. Cancer only cares about cancer, tearing down its host from the inside out, one cell at a time. Cancer teases its victim and family with good days then pummels them with bad. In the end, you lay there, ice on your head, missing your loved ones, crying because you are alone, listening to machines beep and click, while nurses poke you, prod at you, and take your vitals every 15 minutes, yet you remain trapped in a room you cannot leave. Oh you want to leave, the door is right there, but that I.V. octopus has its tentacles forced deep down within your veins, keeping you from moving any farther than the restroom. Humiliated in an open back robe, red sock slippers and mesh net hospital underwear. In the end cancer not only feels like its killing you, but as though its killing your spouse as well.

I know, its tearing me apart on the inside. Many days there is a smile upon my face, but deep down, I am not there, my sorrow holds strong as I think about my wife either in the hospital or at home, dizzy, forgetting things, some days struggling just to walk down the stairs. Cancer is a rat bastard and I hate it! I hate what it represents, I hate the chemotherapy (yes I blame Cancer but in reality it is really the chemotherapy) killing my wife slowly from the inside out, I hate that it is quietly wreaking havoc on our children, reaching out with its bony finger of gloom, forever changing our lives.

I hate feeling like a man of constant sorrow.

Nurse Betty….

February 11, 2014 theycallmebetty2 Comments

20 things Nurse Betty will probably never hear from a Chemotherapy patient.

Does this hospital gown make me look fat?
Man I could eat a horse!
Honey could you stop by the store to purchase me some conditioner?
Now that was an awesome workout!!
Zofran is for pussies!
MMMMMMM-M hospital food again! Hell yeah!!!
This hospital bed is great! I slept all night, like a rock!
Go outside? Hell no I got all I need right here!
Man I look great naked!
I don’t like fresh fruit and vegetables anyways!
Another line to put in nurse, the more the merrier!
Whew! Cytarabine is such a rush!!!! Yah!
I cannot wait for another bone marrow draw!
Vomit-its what’s for dinner, and dessert and breakfast, and oh well you get the point..
Will you please, take the needle out of my Power port and put it BACK in again? Please!
I think you forgot to take my vitals.
Can I please pee in the top hat at home! Please?
I have no idea what my latest blood counts are?
When I get outta here I’m going to Disneyland!!!!
Man oh man I love that I haven’t pooped in three days!

If you have gone through, are going through or are in the midst of Chemotherapy then you know exactly what each and every one of those statements mean to you, personally.

My whole life I have always tried to find the humor in everything. I have too, it is my coping mechanism. I am the guy who can go a really, really long time being yelled at, put down, struggling under an emotional burden and laughter always gets me through, allowing me the opportunity to push my feelings down! Farther and farther, deeper and deeper, because hey, they are my feelings after all and expressing them is just a waste of time right?

So with laughter, nervous, caddy, giggling, straining laughter these feelings of helplessness and grief, struggle and heartache, get pushed farther and farther into a never-ending emotional caldron! hee, nervous hee, ha twitchy ha…..

Don’t worry, once its full down there, and it heats up a bit I’ll let it all out! I promise, scouts honor! I mean all it takes is a certain word or situation and them Whammy! My emotional toil will spill forth like Vesuvius blowing its lid, burning, maiming, damning all around me into an eternity of fear.

Scared you didn’t I?

Seriously, we are very blessed for this sense of humor we have retained throughout this whole event. I am calling it an event because in the grand scheme of things that is all this is-an event. We will look back upon it someday and laugh, probably cry a whole bunch too, but I am sticking with laughter!

My wandering point with all this drivel. (besides hopefully making you smile a bit) Wake up everyday and be thankful. Your troubles are not so big. Money comes and money goes, jobs are a source of income, not a source of heartache and pain. Your children should bring joy to your life, no matter how troublesome they may become. Love them, hold them and try to understand what they may be going through, then show them the right way to deal with life’s little inconsistencies. Tell people you love, how you feel, tell people who inspire you, bring meaning to your life just what an important role they play in your personal growth and sanity. Everyday is a gift for you to open, unwrap, be thankful for this gift and enjoy. Remember it is never to late.

Even when Jacy and I don’t see eye to eye, even when my selfishness helps me to relocate a foot into my mouth. I love her. She is mine and I am hers. No amount of stress related to this family centered catastrophe will change that! Is it fair? No. Do I accept it? Yes. I hate this disease for what it has done to her, not me, but her. No person deserves to go through what she is enduring.

When she lies beside me (hospital or home) I don’t see Jacy the chemotherapy patient, I see Jacy, my wife, my partner, my love. When she places her head onto my shoulder and closes her eyes, there is no cancer, there is no gloom and doom, there is only us, our relationship, the warmth radiating from within our friendship, there is peace. All the reasons we married are pushed to the surface for us to embrace, hold in front of our faces, relishing, reminding us there is no mountain we cannot climb, no obstacle we cannot conquer, together. Staring at the ceiling, gently stroking the soft baldness that is her scalp, I am at ease, she is at ease and she sleeps. It’s not much, but its mine, all mine, our little moments together.

It is love….

The gift…

February 5, 2014 theycallmebetty3 Comments

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..

A day in the Face of Leukemia.

January 12, 2014January 12, 2014 theycallmebetty1 Comment

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..

Leukemia’s house of horrors!

January 9, 2014January 9, 2014 theycallmebetty5 Comments

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?

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)

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.

The Face of Leukemia 2014

January 2, 2014 theycallmebetty2 Comments

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…

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

December 27, 2013December 27, 2013 theycallmebetty6 Comments

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 having 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…

The Face of Leukemia- A day for surprises…

December 20, 2013 theycallmebetty1 Comment

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?

Today-

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 she 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…..

The Face of Leukemia (December 18, 2013)

December 19, 2013 theycallmebetty4 Comments

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..

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