chemotherapy – Page 5 – 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 an uneasy rider…

January 15, 2014January 15, 2014 theycallmebetty3 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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..

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 Faces of Leukemia (December 14, 2013)

December 14, 2013 theycallmebetty2 Comments

My face….

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

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

It is the darkness.

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

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

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

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

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

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

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

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

The Face of Leukemia (December 7, 2013)

December 8, 2013 theycallmebetty1 Comment

Hair:

We trim it, grow it, wax it, shave it, style it, comb it, do crazy things with these human DNA carrying follicles for attention. Hair, its funny we don’t really think all too much about hair as it’s an assumed portion of our anatomy. From the day we are born all of us walk through life with hair of some kind layering our bodies; some more than others and some less than others by choice, but hair none the less.

But there is an elite crowd of human beings walking this earth. They belong to a very special club. A club that no one wants to join, no one person is standing at the clubhouse door banging fervently to get inside. No one.. Yet rumor has it close to one million people are card-carrying members of this fraternity. One million people have come as close to death as you can get then climbed their way back inheriting a lifetime membership along the way. One million people. Think about that for a second….

So what do these one million plus club members have to do with hair?

They don’t have any! That is right, not one single follicle, not a stray, a sprig, a whisker or unkept eyebrow. It hasn’t been shaven down to the epidermis or plucked by a crazy tweezers wielding lunatic. Every single hair, all 140,000 strands of color enhanced, vanity driven strands are gone.

This of course is the norm when you are enrolled in the chemotherapy club, everyone’s worst nightmare right? Its funny really when you think about it, we as a society put so much emphasis on our hair.

Turning grey or tired of your look- Color it, trim it, shape it.

Falling out- Rogaine

Thinning- Hairclub for men/transplants/comb over

Trends- Shave it, mohawk it, pixie cut, curls, bun, dreadlocks, cornrows, bob, etc..

And yet when it has all fallen out, what emphasis is there? To wear a hat or a scarf? As a chemotherapy club member you never have to worry about haircuts, dyes, styles etc.. All you need to worry about is whether or not your noggin stays warm. There are thousands of hats, scarfs, and bandanas to choose from, or hey just step out like Mr. Clean and rock that shit!

Imagine waking up one morning and finding all of your hair-and I mean ALL OF YOUR HAIR gone. You are lying in a bed of your own hair. Pubic hair, pit hair, leg hair and arm hair and of course the hair from your head. What would you do? How would you feel? Would you smile taking the high road and consider it just another chapter in your already interesting life? Or would you curl up into a ball, terrified to walk amongst the hair gifted for fear of being spotted, ridiculed by the insensitive or pitied by the ill-informed. I am not making a judgement for one way or the other, but if I had my choice I am pretty sure a bitchen tattoo would make its way onto my dome, helping me to celebrate the obvious. I am still alive and kicking cancers ass! Now in no way am I advocating for my wife to get a tattoo on her head. It was purely a rhetorical question.

Why am I traveling down this little pathway? Because that is exactly what happened today. Jacy started officially losing her hair. Its coming out a thin handful at a time, and when she sits up in bed her hair looks like a dog when it sheds. Strands poking out of everywhere with strands littering her pillow. Staring at this and fighting an overwhelming urge to pull them out myself (it’s the ape in me) I found myself pondering those very questions. Thinking about all the times I cracked ignorant jokes about looking as a chemo patient to friends. How would I feel? How would you feel if this was happening to you?

Now luckily enough a sense of humor is what all of our friends and family have and my wife is no different. We have joked heartily about her losing hair and tomorrow I am going to shave it all off to save her from choking to death in the middle of the night on an unruly chia pet looking clump! But just the same it has changed my sensitivity level or judging from that last crack maybe it hasn’t? I digress…

Do you really want to know how much you love someone? Do you really want to understand if you or your partner are shallow and vain? Shave each others heads and see if one of three things happen.

You both laugh until snot blows from your nostrils then fall into each others arms with smiles upon your faces.
You realize in that moment you partner is hands down the most beautiful person you have ever known.
You stare at each other uncomfortably acknowledging you are so shallow that you cannot see the beauty within. Only the trappings of what is on the outside.

Lucky for me as I stated previously this has changed my sensitivity towards others, and as far as my wife is concerned, well I have always seen the inner beauty of this woman. When I look into her eyes and kiss her lips there is nothing else. Bald or full of hair, when she smiles at me the world is a better place. I don’t think she really knows the power her smile and personality carry in this world but I am pretty sure she is about to find out.

Anyways, Jacy already knows how to rock the bandana! That my friends is just freaking awesome!

Kicking Cancers Ass once cell at a time!

The Face of Leukemia (December 2, 2013)

December 3, 2013July 5, 2016 theycallmebetty1 Comment

Another couple of days spent sitting patiently watching her sleep. For some this could become tiresome or even boring, but not for me. Time trudges on, as the thought of her waking to speak with me, even for just a little while weighs heavy with anticipation! A second of lucidity, a moment, a glance, the chance to press her cheek against mine long enough to feel close again.

Through all of this, I am reminded that as her husband it’s my job to care for this woman. It is an honor to ensure she has all she needs and it’s my privilege to do so. But none of that would be as easy as it sounds if it weren’t for all the wonderful people who continue to support our family back home. To continually be humbled by the kindness, care, love and empathy shown to us by our friends, co-workers, acquaintances and strangers is overwhelming to say the least. But I am and I thank you all..

Saturday while staring at the east Kaiser wall an epiphany overcame me! So after a little one on one discussion, today with Jacy’s help the two of us acted upon that revelation.

This morning my wife woke up, shuffled her way into a shower, did her hair along with a little make-up. Now this of course took all the energy saved up from a solid nights rest that one participating in chemotherapy could muster, but that did not deter her from participating in this master scheme. A phone call, some texting, our kids taken to school without the slightest knowledge (because loose lips sink ships), and I stealthily rolled into the parking lot of Dixon Montessori Charter School at 0800.

At 0815 I cleared the threshold of Ms. Jacy’s classroom with nothing more than a smile, a cell phone and one iPad mini in hand. The students were gathered together and a simple question and answer period began. You see Ms. Jacy (as most already know from reading my blog) was hauled off to the hospital right after returning home for her lunch break on the Wednesday before the Thanksgiving holiday. Although her students knew what was happening through reports on Thursday and Friday, they had not seen or spoken with the teacher they have all grown to love since.

That was about to change

Jacy’s students know me either as Mr. Jacy or Firefighter James, Ms. Jacy’s husband. So not a lot of time was wasted with useless questioning about my presence. The kids were excited to see me and to hear the latest news, especially in person. But when I held up the iPad and explained my plan the place went nuts!

Now it took me a few tries as I am not the most advanced person immersed in the world of technology. But for the rest of my life I will never forget the sounds of joy that came from each and every student when I turned the iPad around and there was Jacy’s smiling face looking back upon these students. They cheered and clapped and screamed HELLO! A few “bomb-diggities” were tossed about freely! It was fantastic. She could see all of them and they could see her. I stood as still as I could holding the iPad up so she could take in the room and they could feel as though she was right there with all of them. This woman truly loves these kids, all of them and they love her! She has spoken of them everyday since being incarcerated in the Kaiser hospital system. She told them all about her stay, what was happening with her and how much she missed them! It was grand.

When we were finished, looking down and saying goodbye into the iPad, she beamed at me with a look of happiness. The look on her face warmed my heart, but being the ever gruff man I am supposed to be I choked back a bit of mist in my eye, told her I would see her in a couple of hours and hit the end button. Walking out of the classroom I knew Jacy had just received a good old-fashioned jolt of uplifting spirit! Something we all need from time to time, but more so for her right now. Looking back, pretty sure some skipping was done on the way back to the car. Maybe even a selfie high-five?

This week is going to be a long one. There are more complications like the persistent headache that never goes away, continued fatigue and weakness, there are also some sporadic nosebleeds which have us worried just a bit. She can’t bleed as there is no way for her blood to effectively clot, so she has been receiving blood and platelet transfusions. Friday is D-Day and it cant come soon enough. It’s when we find out whether the first round of chemo did the trick! There is a long road ahead for us and every time we meet the doctor I feel as though it is preparation for the road to get longer. But never the less we will travel this road and hopefully meet some really wonderful people along the way. Hopefully we can spread the word about Leukemia and the effects it has on its victims, their families and friends.

The face of leukemia spares no one. It belongs to your mother, your father, brother, sister, uncle, aunt, friend, acquaintance, and stranger. The face of Leukemia can attach itself to any and every person in the human race and it does not discriminate. The face of leukemia cares not about your age because, old face, young face, the face of an infant it still survives. The face of leukemia doesn’t care about your financial status, whether you vacation in the Hampton’s or live in a cardboard box under a bridge. The face of leukemia is driven by this disease and the victims it inhabits therefore the face of leukemia is and always will be you.

Look in the mirror and ask yourself, what would I do if I had cancer? Who would I turn too. What questions would I ask? How would I react? Would I be ready to take cancer on and kick its ass without wavering?

I never asked myself those questions before now. But I have, and I am going to do everything in my power to make this a success for the woman I love. I am also going to tell everyone I can about leukemia, it effects, its signs and symptoms. Then with a little luck, the power of positive thinking, prayer and the amazing skills associated with the many medical professionals we have encountered up to this point.

“The face of leukemia” will have a happy ending!

Because I love her face, and leukemia can’t have it anymore……

The Face of Leukemia (Saturday Nov 30 2013)

November 30, 2013November 30, 2013 theycallmebetty2 Comments

Chemotherapy (often abbreviated to chemo) is the treatment of cancer with one or more cytotoxic anti-neoplastic drugs (“chemotherapeutic agents”) as part of a standardized regimen. Chemotherapy may be given with a curative intent or it may aim to prolong life or to palliate symptoms. It is often used in conjunction with other cancer treatments, such as radiation therapy or surgery. Certain chemotherapeutic agents also have a role in the treatment of other conditions, including ankylosing spondylitis, multiple sclerosis, Crohn’s disease, psoriasis, psoriatic arthritis, systemic lupus erythematosus, rheumatoid arthritis, and scleroderma.

A lot of really fancy words that add up to a great weekend at your local hospital huh? Over the last few days I’ve had numerous people ask me several question about chemotherapy and its effect. More specifically its effects on Jacy.

Heres what I have learned in the past 240 hours.

Chemotherapy is extremely hard on your system as it not only kills the “bad” cell or cells targeted for annihilation, but it also kills all the “good” cells in your system. Hence the reason for a prolonged hospital stay.

While in the hospital you will experience several really interesting phenomenons.

Night sweats-not just your average sweat either. Picture running the Boston marathon. On a 100 degree day. With 100% humidity. While wearing a garbage bag. Over your wool suit. You getting the picture yet? It is not uncommon to fall asleep and wake up in a virtual pool of sweat.
Hot flashes- these aint no menopause, room is spinning type hot flashes either! These suckers come on like a mid summer Texas heat wave! There isn’t enough water in Lake Tahoe to cool these bad boys down.
Shivering- Whilst you are sweltering amidst your hot flashes, praying for something, anything to cool yourself down. Dont fret because not long after your hot flashes arrive the arctic bound shivers and shakes take over. Yep cold as ice, goosebumps so big there should be a hunting season and never ever enough blankets to bring you back to room temperature.
Diarrhea- That’s right boys and girls no treatment for any life altering cancer would be complete without this little gem. Not your average diarrhea either. It glows! Hee hee, that’s right, it’s a bright yellow/greenish almost snap-light looking glow. It’s that special poo that makes a spectacle of itself.
Mass urination need to go pee? Do it! Then in 10 minutes get up and do it again! Remember you have 1000’s of cc’s running through your system and thanks to chemotherapy killing you appetite, that stuff just filters right on through you.
Loss of appetite- yep, best weight loss program on the planet. P90X, the biggest loser and Jenny Craig got nothing on this little regiment of fun! Simple really, just inject your body with near death chemicals then lay around for a week fighting the urge to vomit. Now throw some hospital food your way (uh yuck!) and there is no way you are gaining a single pound sister! Oh snap!
Multiple needle sticks and blood draws- ever wonder what a pin cushion feels like? Well no more, because my dear you are now the human version. Got the runs? You get something to harden that up through an injection. Got constipation, you get something for that in an I.V., need blood, antibiotics, pain reliever, or anything else to counter react what ever you were given an hour ago! In it goes, through a needle stick or straight through an I.V.
Uncontrollable sleep patterns- One minute you are having a nice conversation and BAM! You are ass out for the next four hours! Wake up bright-eyed and bushy-tailed, ten minutes later and BAM! Back asleep for 6 more. Heck you may even fall asleep in the middle of talking with your doctor! Dont worry that information wasnt important! It’s going to be this way for a while so get a really good pillow Rumplestiltskin.
Radioactive urine: Now this depends on the type of treatment you are getting, but once you start chemotherapy no one is allowed to use that bathroom but you! Wouldnt want your coin purse to glow in the dark you know.
Chemo sores in unexpected places. Yep that’s right boys and girls if you pump the system with chemicals and they exit through you urinary tract/bowels guess what? Your skin doesn’t like it very much and reacts with fervor? I’ll just let that picture soak in for a while as you process and visualize your own personal nightmarish looking sores.
Last but definitely not least Hair loss. Complete hair loss. You killed all those “good” cells with chemotherapy which means you killed the cells that deliver nutrients to your hair follicles. So suck it up Telly Savalis. Sinead O Connor has nothing on you. But when you get your triple XXX tattoo please make sure it’s centered correctly upon your neck. I would hate for you to look strange.

Over the last week Jacy has experienced all of these with the exception of sores and hair loss. So far we are attributing this to very careful hygiene and a solid barrier of protection delivered through a specified creme. Diligence has been the utmost of priorities. As far as the hair loss I am still hedging on stubborn Cuban genes, but the doctor has assured us both the hair will go and when it does, she will just wake up one morning to clumps of hair all over her pillow.

Tonight we sat across from each other and played words with friends. I know it sounds silly or even boring but for me it was awesome! She is in great spirits after her first day off chemotherapy. The bathroom is still never far from her reach and the nausea is still there, but her beautiful smile is larger than ever and that kick ass attitude carries the same resilience.

Our doctor continues to remind us we have a long road to travel. The shivers come on uncontrollably and usually arrive about the time she is really starting to feel better. No matter what happens she will need a bone marrow transplant and it will be a long week waiting for the ability to draw her own bone marrow for testing to see where we stand in regards to killing all of the ‘bad” cells.

As many of you know I took the end of the month off because this was the week we were supposed to go away and be together just her and I. A break from children, the ranch and life in general; the type of break every marriage needs from time to time to reconnect. She had been asking for me to make this happen for quite sometime. Apparently she unknowingly decided how it was going to go, and short of not being able to sleep together in the same bed. No bar or drink service allowed, no swimming pool or spa for us to lounge about during the day. It hasn’t been all that bad. We have gotten a ton of alone time, meals (well just hers) delivered to our room, turn down service, cable t.v. and some serious privacy. We have also spent quite a bit of time gazing into each others eyes, holding hands and softly saying “I love you” while the sun sets over the eastern wall of Kaiser.

I couldn’t have asked for a better partner to go on vacation with, even if it’s in a hospital, with a life altering event hovering over our heads. I love you Jacy, you are my best friend, one hell of a partner, hands down the most beautiful person I know both inside and out! As I said the day we married, I cant wait to spend the rest of my life with you.

So lets keep kicking cancers ass!!

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