white blood cells – They call me Betty

Leukemia-Blood

January 24, 2014 theycallmebetty2 Comments

Blood is a bodily fluid in animals that delivers necessary substances such as nutrients and oxygen to the cells and transports metabolic waste products away from those same cells.

In vertebrates, it is composed of blood cells suspended in blood plasma. Plasma, which constitutes 55% of blood fluid, is mostly water (92% by volume),^[1] and contains dissipated proteins, glucose, mineral ions, hormones, carbon dioxide (plasma being the main medium for excretory product transportation), and blood cells themselves. Albumin is the main protein in plasma, and it functions to regulate the colloidal osmotic pressure of blood. The blood cells are mainly red blood cells (also called RBCs or erythrocytes) and white blood cells, including leukocytes and platelets. The most abundant cells in vertebrate blood are red blood cells. These contain hemoglobin, an iron-containing protein, which facilitates transportation of oxygen by reversibly binding to this respiratory gas and greatly increasing its solubility in blood. In contrast, carbon dioxide is almost entirely transported extracellularly dissolved in plasma as bicarbonate ion.

Vertebrate blood is bright red when its hemoglobin is oxygenated. Some animals, such as crustaceans and mollusks, use hemocyanin to carry oxygen, instead of hemoglobin. Insects and some mollusks use a fluid called hemolymph instead of blood, the difference being that hemolymph is not contained in a closed circulatory system. In most insects, this “blood” does not contain oxygen-carrying molecules such as hemoglobin because their bodies are small enough for their tracheal system to suffice for supplying oxygen.

Jawed vertebrates have an adaptive immune system, based largely on white blood cells. White blood cells help to resist infections and parasites. Platelets are important in the clotting of blood. Arthropods, using hemolymph, have hemocytes as part of their immune system.

Blood is circulated around the body through blood vessels by the pumping action of the heart. In animals with lungs, arterial blood carries oxygen from inhaled air to the tissues of the body, and venous blood carries carbon dioxide, a waste product of metabolism produced by cells, from the tissues to the lungs to be exhaled.

Medical terms related to blood often begin with hemo- or hemato- (also spelled haemo- and haemato-) from the Greek word αἷμα (haima) for “blood”. In terms of anatomy and histology, blood is considered a specialized form of connective tissue, given its origin in the bones and the presence of potential molecular fibers in the form of fibrinogen.

Wikipedia

I know that was a hell of an introduction to today’s blog, but it was really important for me to reaffirm or institute a knowledge base for you to draw upon as I ramble on about our recent tribulations in regards to chemotherapy and its nasty after effects.

Leaving the hospital after 7 days of chemotherapy, Jacy feels good, not great but good. Our hopes remain high and we press onward as no other options but to do so exist. Two days out of the hospital and allergic reaction occurs after receiving a shot of Neupogen.

To the ER we head and a long night of tracing down this problem while treating associated symptoms ensues.

14 hours later we are home.

Jacy continues into the week still feeling well, but weaker by the day. Chemotherapy is working as designed, coursing through her body, and wreaking havoc as cell counts drop lower and lower. Now here is where things get tricky. You see Jacy understands what it feels like to have an abnormally low cell count having experienced this phenomenon within the safe confines of a hospital. Because of this her doctor has her entrusted to recognize this feeling, make the appropriate phone calls and return to the local infusion center for a much needed blood transfusion, boosting cells back into her dying system.

Jacy instead decides to wait..

Why? Because she has an appointment for a blood draw later that day and she doesn’t want to inconvenience anyone. (Always the worrier) So we arrive at the designated time. One problem, she has become so cell depleted, I can barely get her out of the car into a hospital wheel chair. Wanting to take her straight to the ER (color is no good, breathing is shallow and she is exhausted from simple movements) I instead (per her request) head to the infusion center, as planned for her appointed blood draw.

Upon turning in our paperwork, a nurse appears from behind closed doors to grab multiple appointment slips from a basket and I quickly take this opportunity stop her, informing her of my wife’s worsening condition. Walking her over we find Jacy in her wheelchair, speaking repetitiously; I don’t feel well, help me I don’t feel well, something’s not right, something’s not right, I don’t feel well. The nurse takes one look at her and it’s off to the races.

Rapidly she is brought inside, her port tapped, blood drawn, and we are treated like gold as it quickly becomes obvious she is in need of more blood. To the ER we go!

In the ER, we are welcomed once again by friendly faces, my fears are calmed, my heart rate drops and we begin another arduous journey of emergency care. Thinking this will be no big deal, it is after all just a blood transfusion one more in a list covering nine such applications over the last 30 days, I get her settled, talk with the doctor about the plan, watch as they put the standard medications on board for the delivery of blood and make a quick exit to run home ( a mere 7 miles away) and put our children to bed.

No big deal right?-WRONG

The text comes one hour later; Oh God, I am covered from head to toe in hives, my eyes, ears, scalp, everything! I itch so badly! I’ve had an allergic reaction to the transfusion and they are determining what to do!

Are you freaking kidding me! A reaction to the Neupogen (could have killed her) and now a reaction to blood, the one substance she needs most to survive! What the holy hell? Heart racing I head back over to the ER and meet up with my swollen, covered in hives wife!

After a long consult, the addition of a steroid that made her feel as though electricity was being pumped into her private parts (yes the vagina) and a substantial reduction in flow rate, with a large dose of Benadryl, Jacy nods off to sleep receiving the blood she so desperately deserves.

16 hours later, feeling like a million bucks Jacy comes home….

5 days later..

Jacy begins to feel “funny”. Yep it seems as though her body has still not hit rock bottom! Neupogen everyday and her bones are just starting to ache, which is a good sign; it means cells are trying to grow! But she doesn’t feel good, so this time she calls ahead, makes the proper arrangements, we head to the ER with plenty of time before her body hits rock bottom. The hospital can’t order the blood until she is physically on the property. So the sooner we arrive the better. Walking through the door I am beginning to feel as though we have never left. This place, this wondrous place of miracles is starting to feel like Groundhog Day to me.

Once checked in we walk to our room, none of the regulars are around so far, but as always the RN’s are amazing. Jacy is settled into her room, her port is tapped, a very nice conversation between the male RN and me ensues. It feels like old hat, unfortunately as though we belong here, and sadly a feeling like this will be her way of life forever comes over me. A thought enters my head; how many nurses will we meet in our life from this point forward? Will they all be as wonderful as those blessing us now?

Blood is ordered. The syrupy, red mixture she needs to survive. We are grateful for all those who donate, we feel good about this round, as though we have a handle on this procedure. I am also counting infusions now. After 20 infusions she risks developing an abundance of iron in her blood stream, which would mean she would need to have blood taken out every few weeks for the rest of her life. Yep feeling as though things may get a tad rougher..

Kissing her on the head, it’s all standard fare now, she asks that I leave and spend time with the children, telling me she will call in a few hours after the transfusion. Once again against my better judgment, I realize the kids do need me and recede to the parking lot to retrieve my truck.

One hour later, I receive this text; having another allergic reaction, Epinephrine and tons of Benadryl, they have stopped the transfusion, my heart is pounding! It’s not good, I am afraid they won’t be able to give me transfusions anymore!

Rushing back to the ER I find my wife, sad, down, beaten. She is terrified because the doctors don’t know what to do. The blood she was receiving is sent off for testing, the Epinephrine is coursing through her system elevating her resting heart rate to 120-140 and she still feels sick. As time passes she becomes weaker and weaker. Without blood she dies, with blood and another allergic reaction she risks her lungs shutting down and she dies, it’s a no win situation.

The RN gives her another dose of Benadryl; slowly she drifts off to sleep. A consult with Oncology in the morning is all we know. Before Jacy fell asleep she proclaimed to be very hungry and as I kiss her forehead to say goodnight, she tells me I am not allowed back into the room unless I bring her food! Food with protein!

Arriving home alone once again, I lay in bed worried for my wife. She is pale, doesn’t feel good, cannot receive the fluids she so desperately needs and it scares me. I sleep on her side of the bed…

The next day I arrive with an egg & cheese muffin sandwich in my hand! She wolfs it down and sips the English tea I also procured. Sitting on the bed she lays in my arms and cries. She is tired of fighting, feels like giving up and states: I don’t want to do this anymore. This of course does not sit well with me. Holding her I reassure her; this is just a bump in the road all will be ok in a matter of time. My heart is breaking, I stay strong, showing no emotion, but I am dying inside! Before our pity party can grow the RN enters the room; a plan is in place, slow down the drip (from one hour to four), a new steroid is to be used and all should go swimmingly.

The steroid is introduced, along with a giant bolus of Benadryl. Jacy once again slips off to sleep. I watch patiently as the blood ever so slowly makes its way into my wife’s chest. Once there, my observation skills increase! Breathing-ok, Color-ok, heart rate-ok, blood pressure-ok, hives-none! All is good. After a half an hour, the nurse talks me into going home, promising me to call me should anything go wrong. Reluctantly I do so…

18 hours later, 2 pints of blood, some platelets and feeling like a million bucks, she comes home…

Don’t ever take for granted that red fluid coursing through your veins. Leukemia is a cancer of the blood and blood is life, without blood you cannot exist. Be thankful if you have never needed blood, even more thankful if you have received blood. If you are healthy, have the time, or the desire to help someone in need. Please go and donate blood. It’s saving my wife’s life, one transfusion at a time, and for that I am eternally grateful….

Leukemia’s torn heart….

January 17, 2014 theycallmebetty3 Comments

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

It is the feeling of being torn between two loves.

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

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

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

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

So how am I torn?

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

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

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.

Random thoughts on life and Leukemia

January 6, 2014 theycallmebetty3 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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 (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..

The Face of Leukemia (December 11, 2013)

December 11, 2013November 28, 2018 theycallmebettyLeave a comment

And so another aspect of this journey begins, a long and winding road filled with new highs and lows. The first hurdle has been crossed. The hospital is temporarily behind us as we will head back towards it in a month. Now begins a fight of great proportions. Battling her compromised immune system.

4,500-10,000 white blood cells per micro-liter (mcL).

That is what we are hoping to achieve over the next week. It doesn’t sound like much but in the grand scheme of things it’s the difference between life and death, staying home and heading back to the hospital. Walking then running, being surrounded by family and friends ar remaining in isolation.

Jacy’s white blood cell count was obliterated, dropped to zero by chemotherapy. This was of course designed as such to decimate the mutated cancerous “blasts” of immature cells invading her system, slowly eliminating her ability to fight infection, damaging other cells and choking her system with further useless cells.

Before she was able to come home her white cell count needed to rise above 800 and for days we would get excited as it rose to 600 then dropped to nothing with an onset of fever and night sweats. Jacy’s platelet count would drop meaning her red cells were disappearing and her body was having trouble converting or carrying oxygen within her system. Chemotherapy as I have said before destroys all cells. You must kill them all so new ones can grow and flourish. Or as the doctor put it, be brought as close to death as one can get before being allowed to live. So everyday would start out with a new blood transfusion, platelets and a lot of rest.

Along with all this cellular bombardment comes the neupogen shots. These shots are started after white blood cells slowly start production. What is neupogen?

Filgrastim- (Neupogen) is a granulocyte colony-stimulating factor (G-CSF) analog used to stimulate the proliferation and differentiation of granulocytes.[1] It is produced by recombinant DNA technology. The gene for human granulocyte colony-stimulating factor is inserted into the genetic material of Escherichia coli. The G-CSF then produced by E. coli is different from G-CSF naturally made in humans.
Filgrastim is marketed under several brand names, including Neupogen (Amgen), Imumax (Abbott Laboratories), Grafeel (Dr. Reddy’s Laboratories), Neukine (Intas Biopharmaceuticals), Emgrast (Emcure Pharmaceuticals), Religrast (Reliance Life Sciences), Zarzio (Sandoz), Nufil (Biocon) and others.
Apricus Biosciences is currently developing and testing a product under the brand name Nupen which can deliver filgrastim through the skin to improve post-chemotherapy recovery of neutrophil counts.

Ok so that was the technical doctor jargon, a pharmacists evening read. The down and dirty is Neupogen jump starts your system, telling it to make white blood cells and make them now!!

Neupogen is given through subcutaneous shots, started in the hospital and once we achieved a white cell bench mark the responsibility has been passed to me for in home treatment. For all the greatness that is Neupogen there are also a few side effects for Jacy to deal with and they are;

The most commonly observed adverse effect is mild-to-moderate bone pain after repeated administration and local skin reactions at the site of injection.[3] Other observed adverse effects include serious allergic reactions (including a rash over the whole body, shortness of breath, wheezing, dizziness, swelling around the mouth or eyes, fast pulse, and sweating), ruptured spleen (sometimes resulting in death), alveolar hemorrhage, acute respiratory distress syndrome, and hemoptysis.[3] Severe sickle cell crises, in some cases resulting in death, have been associated with the use of filgrastim in patients with sickle cell disorders.[4]

The bone pain is killing her! It hurts to lay down, it hurts to stand up, she explained it to me as such, “my bones feel like they are exploding”. Can you imagine feeling as though your bones were exploding? I can’t.

So we are finally home and the last 48 hours have been an adjustment. Jacy is still exhausted, but very, very happy to be in her home. She is sleeping a lot (which is good), her bones are exploding inside, fatigue comes from walking downstairs (although we did journey outside yesterday which was awesome). The bed is soaked from night sweats and she awakes at 3 am unable to return in slumber. Jacy is also coming to terms that her life in the forseeable future will not be the same. This is going to be the hardest for her. Not being able to ride her horses or walk outside to play with the dogs is bringing much strain to the newest face of Leukemia. The thought of not being able to teach in her classroom this year is devastating. But she will prevail. She is an incredibly strong woman who will triumph over this bastard known as Leukemia.

Today I held her as she cried over a current life lost, the realization of a unkown future, and the feeling of utter helplessness. I have always considered myself a strong person, but until you have faced a battle of this magnitude, become a true foundation for the person you love. You realize everything you have done in the past pales in comparison. Then you cry, not in front of her, but alone, so that foundation remains steadfast. My tears of sadness shedding her pain not mine. Throwing those feelings away, never to be seen or felt again, because we can only live for the positive.

Remission is a word the both of us are longing to hear. A word associated with freedom from the grip cancer/Leukemia has upon a soul. We will walk every step together towards Remission, holding hands, moving slowly until we arrive.

Still kicking cancers ass, one cell at a time.

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