Tag: AML

There is light..

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Home…

Home is where the heart is.. Piny the elder

Love begins by taking care of the closest ones, the ones at home.. Mother Teresa

The ache for home lives in all of us, the safe place where we can go as we are and not be questioned… Maya Angelou

Imagine if you will, life has thrown you a curve, well ok, more like life has thrown you a curve and you forgot not only your uniform, ball cap, mitt, cleats and cup but you weren’t even looking in the general direction as this curve, this speeding 90 miles an hour curve ball hits you square in the head! (Sorry I love baseball, my blog, my analogy)

Now just as you get up, dust yourself off in preparation for righting this horrific wrong, this lack of observation on the field; coach comes out and says your contracts been cancelled. You no longer have a home. Years of familiarity, friendships, camaraderie, and your family (the team) gone with a simple decision. All done while following well written rules allowing others to decide your future.

That is how it seemed yesterday when we began discussing care for Jacy.  You see, after a bone marrow or Allogenic Transplant, there is five or so days still confined to a hospital room but as soon as your white cells begin to act appropriately you are released for out-patient care.  No big deal right? Wrong..

We live over two hours away and learned that all patients must live within a one hour maximum radius to ensure rapid response from the appropriate physicians should a dire medical emergency arise. Also there would be numerous doctors appointments that could only be held at Stanford.  So with high traffic flows and population density this limited our choices for a recovery lair. Stanford has housing available near campus, but we had been warned those are hardest of all domiciles to acquire.  Our next best location for Stanford provided housing was in and around the San Jose area.  Although tempting, something didn’t feel right in my wife’s heart about abandoning her family and San Jose just seemed so far away from Stanford and home. If you need to be confined unwillingly then right next to campus seemed the most prudent course of action.

Either way three months away from home, away from her children and farm. None of it felt right and it was eating her alive.  As we listened to contractual stipulations ensuring all healthcare recipients were in full understanding of terms and agreements, it felt so wrong to have such a momentous life shift bring further pain through separation.

All the way home she felt as though her life was being ripped away.  She couldn’t grasp the reality of having to live so far away.  No matter where she ended up for those three months her sister would be with her as she needed 24 hour care.  But just the premise of her children being so far away while she stayed in a foreign place with surroundings unfamiliar was eating her alive.

It was bothering me as well.  Although I fully understood the reasoning’s behind these decisions we had no control over, I just wanted to make things easier. Not just for her, but for our children.

And then yesterday it hit me, her dads house. He has an apartment off the main house that could be kept clean, her sister would then still be home, her family would be surrounding her, and we could come visit in a place familiar to our children. A place where they could see their mom, love on their mom and then go off to play with cousins. A place where her rehab was surrounded by peaceful redwoods and stunning views of the silicon valley!  It was the perfect set-up! After talking about it with her family everyone was on board!!! Our only glitch! In the paperwork defining areas of acceptance, the Saratoga mountain range was excluded.  A case may have to be fought and fought hard I pondered! For you see travel time from her dads house to Stanford is 35 minutes, there is minimal traffic from the route we take and that alone makes it closer than San Jose!

Every family members fingers remained crossed as Jacy called the social worker today in hopes of pleading a case.  A case built around what her entire family felt was best for the patient, their sister, daughter, mother and wife. Total family care, a place that is like a second home, and peace of mind for all involved.  Cant we please overlook the Saratoga mountain range clause? PLEASE?????

The answer; YES!!!!!

That is right our first ray of light through this medical tunnel of darkness! No argument, no pandering, just a good old-fashioned yes! Of course this after the social worker mapped it ensuring all was above-board! We heard Yes!!! I almost leapt from my seat upon hearing the news! She was ecstatic, I was relieved, her fathers fears eased and an entire family able to give this woman we love all the support she needs!

Our first hurdle down and it was a psychologically big one!

Tomorrow brings another day and something, anything to look forward too.

A trip to Stanfords Cancer Institute

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Sitting in traffic wondering how anybody could possibly live in the Bay Area without owning an urban assault vehicle reminiscent of something from Mad Maxx for redemption cast upon rude idiotic drivers I will never know! While commuters are frustratingly obnoxious my focus channels instead towards taking that initial step into Stanford’s Cancer institute.

It will be emotional for sure, Jacy is nervously anticipating our meeting with the Bone marrow Transplant team. There are so many unknowns in regards to facilities, rooms, and living arrangements for both pre and post-transplant. What will her doctor be like? How many people will be involved in this process? Has anyone determined if her brother is a match? If he is not, what is the prognosis for a match and how long until we know? What is or is not covered under our insurance since we are leaving the Kaiser system? What is the real number in terms of time away from work?

I am nervous too. It has been a very long time since I set foot in this place, I hoped to never come back here again so I am praying for the best. Will I be strong enough to keep her spirits up if we hear things we don’t like? Do I have the ability to keep quiet and listen, truly listen to all the information while reading my wife’s responses and emotions ensuring she gets the most out of this meeting while feeling my support?

Once on campus it’s clear this will be no easy arrival, there are multiple construction projects in various stages of completion. No parking what so ever, and traffic complete with traffic monitors moving us slowly from one place to another. Finally after being directed from one street to the next we come upon the front of the Cancer Institute. Carefully pulling up I let Jacy get out to check in since we are border line late thanks to 35 minutes at the Bay bridge toll plaza. As I circle around I find the front entrance is for valet parking. Yep that’s right valet parking! This place looks more like an entrance to a 5 star hotel complete with black jacket, bow tie wearing servants. Turning the car over and receiving my return ticket, in my best dry humor tone I let the valet know to take it easy in the corners, not many can handle a car like ours and temptation is great! He nods, smiles, says thank you and slowly pulls away in our Honda Odyssey. Pretty sure he had no idea what I was talking about or mumbled asshole as he drove away. Either way good show old boy, for keeping that beaming professional appearance.

Walking inside the Cancer Institute my impression has not changed. Glass, marble, wood, brass, and staff members dressed professionally. It is a sight to behold. Making my way down to our appointment area I also can’t help but notice how busy it is! This place is vibrating with expectations, anticipation, and exasperation; seriously this place is buzzing with intensity! Cancer has become a business for sure, and business is booming! Meeting up with my wife, we are called into an exam room where we are introduced to one of Stanford’s social workers. She is a doll, who asks us questions covering our lives at home, where we live, how we live, how many children we have, is there a solid support system in place, do we have any animals, what kind of animals, what do we know about transplants? Jacy and I have both done our best to be informed on all aspects of Leukemia and it showed during our interview.

Dr. Muffly walked in and introduced herself. We both liked her immediately! She is very kind, warm and friendly. To be honest, not what I expected, I don’t know why, there is no real reason why and even as I am typing this it bothers me that my predisposed expectation was somewhat skewed. Needless to say we had a wonderful meeting. When we asked about jacys brother being a match, she picked up the phone without hesitation and called her assistant who after a few seconds of looking through data informed us he was not. My heart sank a bit, but Dr. Muffly insured us it was going to fine. Only 25% of full siblings are an actual match anyways, so the odds were already against us.

We talked about Jacy’s form of Leukemia, what it meant for the short and long term. We discussed the process, where I also learned that actual bone marrow is only used in specific cases. The latest advancements are centered on Stem-Cells through an Allogenic Transplantation.

“In an Allogenic Transplantation, a person’s stem cells are replaced with new, healthy stem cells obtained from a donor or from donated umbilical cord blood. Chemotherapy or a combination of chemotherapy and radiation therapy is first given to eradicate cancer cells, to suppress the patient’s immune system, or both. The new stem cells are then infused into the patient’s bloodstream through an intravenous catheter, in a procedure that is similar to a blood transfusion.”

Very, very cool stuff! The donor is given a shot to hyper activate their system, creating active stem cells released from the donors marrow. After a week to ten days that blood is collected from the donor and shipped straight to its recipient. No more pain or discomfort from the actual bone marrow procedure. Once the infusion is complete the patient is kept for another five days in the hospital then seen on an outpatient status. Here is the caveat. Once in outpatient status the patient cannot live more than an hour away. We live two hours away so home is a no go. The hospital provides housing both near its campus and in San Jose. Jacy needs to be close for monitoring. A fever, severe nausea, or what they refer too as graft vs host disease are all issues to be diligent through observation.

“Graft versus host disease (GVHD) is a common complication following an allogenic tissue transplant. It is commonly associated with stem cell or bone marrow transplants but the term also applies to other forms of tissue graft. Immune cells (white blood cells) in the tissue (the graft) recognize the recipient (the host) as “foreign”. The transplanted immune cells then attack the host’s body cells. GVHD can also occur after a blood transfusion if the blood products have not been irradiated or treated with an approved pathogen reduction system.”

Any signs of these and she needs to come right in, day or night. The total time frame for being away from home is 3 months.

Let that sink in for a moment. Your whole world is feeling out of control, statistics flying left and right, in the hospital then out of the hospital in combination with a gigantic fear all will fail leaving you to die. You are told you cannot be home with your children, family, for three months. It is easy to be reassuring, it is easy to scoff and ramble off witty lines like: it’s only a blip in time, you will get through this, be back home and never look back! But when it is you, trying to wrap your mind around missing more of your children’s activities, seeing and interacting with our farm and everything you know. It is a tough to understand, which leads to the invariable; why me?

When she comes home, she now knows, she will not be able to work for a year and even though she is home, no animals (dogs exempt) for up to six months. During this time (from graft to home) she will wear what appears as Darth Vaders entry level mask. This HEPA or High Efficiency Particulate Respirator should keep all viruses and organisms from entering her body. She must also have nothing but fresh food prepared by her caretaker for every meal to ensure no contamination. Wait! I said caretaker! That’s right! She will need a 24 hour a day caretaker, someone preferably a family member to monitor her, feed her, and drive her (yep banned from driving for 4 months) to all her appointments.

This was quite a bit of information and even though we knew most of this from doing our homework, it was more than we were really prepared to acknowledge.

The kicker through it all? The one thing that stuck with me? Was those damn statistics again! I have always said; Statistics are to a mathematician what a lamppost is to a drunk. Just something to lean on. But for some reason hearing straight from the doctor’s mouth, it is a 50/50 chance for recovery. Hit me really hard. I never let it show, but like a sock in the gut is just kind of took away my air and left me sitting there for a moment. I know there are millions of factors, (read my last blog) I know my wife is a fighter, I know all the positives one can spew, but until you have sat there, focused on the words coming from your doctors mouth it just isn’t the same.

It was a long painful car ride home. She cried, we held hands, I did my very best to comfort this woman I love. The prognosis still remains great! But nothing hurts more than hearing your wife tell you she feels as though she has been handed a death sentence. She has a right to feel that way, she has a right to be sad, and she has a right to be angry at everything. This is something I cannot fix, this is something we need to have faith over. This is something that will strengthen our marriage even more. She will come away from this in remission. I just know it.

This morning we received some great news! There are four donors that are a match! All four have been contacted for further blood work! Our first step to winning this battle, the hardest step that so many never get to take! We have a match! I urge you, any of you to please register with Be the Match! You may have the honor of saving a life. In this case someone did, and it will save my wife’s life!

She also called me this morning to tell me she is back in the zone! All positive thoughts from here forward! A little time in church did a woman of faith wonders!

God Bless everyone for the continued support.

keep calm

Leukemia- handling it all…

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Going through this arduous process, I have come to a simple and strangely satisfying resolve in regards to Leukemia. Becoming Positive and proactive not Negative and reactive.
Now becoming negative and reactive is relatively simple. Freak the hell out at any bit of news from any doctor, nurse, floor attendant or even hospital janitor! Then act as though the world is coming to an end! Happens all the time! I am not being callous it really does, it is human nature. Seriously though most janitors have been there so long they would probably qualify at least to the ER tech level! (This is humor any ER techs don’t get butt hurt). There is also a positive-reactive which centers on acting quickly and decisively, a wonderful quality I may add.
Positive and Proactive is a learned skill; thinking calmly, forming a plan, and handling adversity with a determined end result in mind! But becoming proactive takes a little more finesse, a tad bit of dulled nerves as to not jump at the slightest verbal or non verbal queue given by any one person wearing a lab coat, a great sense of humor and a good pocket pint of whiskey stored inside your jacket! (Heather R, you devil child that was for you)
First time around when we heard the word Leukemia; well actually it sounded more like

L E U K E M I A… (slow motion, deep sounding with scary movie music overtones).

I freaked, we freaked, and our friends and families freaked with us! We were all reactive on both levels stated above, and justifiably so! Positive and Negative reactive. Leukemia is a word, a name, a label that incites visions of wheel chairs, frail wasted away human beings and of course losing our cherished loved ones to death. What it doesn’t sound like is success and why should it? Leukemia is a nasty form of cancer that automatically shuts our brains down to logic out of self-preservation! The word just screams fear and that is too bad really, because if we stand back and educate ourselves we learn important facts such as, according to the Honor Society of Nursing, success rates over time have been on the rise.
“Leukemia is a serious illness that is in the top ten of cancer-related deaths in the United States. It is worth noting that successful treatment rates have increased four-fold since the 1960s. At the beginning of that decade, only 14 percent of people survived for five years after diagnosis. By 2005, that percentage had increased to 54 percent. Nevertheless, in 2009 leukemia claimed the lives of over 21,000 people, with the highest number of deaths among males with chronic lymphoblastic leukemia.”
Now I know that doesn’t look like a positive or particularly sunny report, but really it is great news! From 14 percent to 54 percent is superb!
SEER or Surveillance, Epidemiology and End Results program of the National Cancer Institute has a more up to date statistic. From 2004-2010 57.2 percent of those who contracted Leukemia lived longer than 5 years from time of remission! OUTSTANDING!
According to the statistics a majority of patients who don’t survive are male in conjunction with the numbers being skewed with children under 15 and elderly adults 60+. As you can see even though these numbers constitute the passing or loss of loved ones to this terrible form of cancer the numbers in regards to our specific case just keep getting better! Positive thinking so let’s form a plan!

Now remember from earlier stories there are 4 main types of Leukemia
AML–Acute Myeloid Leukemia
ALL–Acute Lymphocytic Leukemia
CLL–Chronic Lymphocytic Leukemia
CML–Chronic Myeloid Leukemia

Jacy has AML
Acute myeloid leukemia (AML), also known as acute myelogenous leukemia, acute myeloblastic leukemia, acute granulocytic leukemia or acute nonlymphocytic leukemia is a fast-growing form of cancer of the blood and bone marrow.
AML is the most common type of acute leukemia. It occurs when the bone marrow begins to make blasts, cells that have not yet completely matured. These blasts normally develop into white blood cells. However, in AML, these cells do not develop and are unable to ward off infections.
In AML, the bone marrow may also make abnormal red blood cells and platelets. The number of these abnormal cells increases rapidly, and the abnormal (leukemia) cells begin to crowd out the normal white blood cells, red blood cells and platelets that the body needs.
One of the main things that differentiate AML from the other main forms of leukemia is that it has eight different subtypes, which are based on the cell that the leukemia developed from. The types of acute myelogenous leukemia include:
• Myeloblastic (M0) – on special analysis
• Myeloblastic (M1) – without maturation
• Myeloblastic (M2) – with maturation
• Promyeloctic (M3)
• Myelomonocytic (M4)
• Monocytic (M5)
• Erythroleukemia (M6)
• Megakaryocytic (M7)
Acute myeloid leukemia treatment options
Treatment for AML may include chemotherapy, radiation therapy, stem cell transplant and/or immunotherapy. Your integrated team of leukemia experts will answer your questions and recommend treatment options based on your unique diagnosis and needs.
A common chemotherapy treatment for AML begins with induction chemotherapy, in which a combination of drugs is used to destroy as many leukemia cells as possible and bring blood counts to normal. This is followed by consolidation chemotherapy, to destroy any remaining leukemia cells that cannot be seen in the blood or bone marrow.
If cells continue to survive or regenerate within the blood stream another round of consolidation therapy is repeated leading to the possibility of a Bone Marrow Transplant.

This is where we are with Jacy. She will be receiving a Bone Marrow Transplant.
I will cover the Bone Marrow Transplant in depth after our meeting with the BMTT (Bone Marrow Transplant Team) on Monday.
Jacy’s doctor continues to remind us most statistics are up to 4 years old and Leukemia success rates are skyrocketing! She also reminds us not to overly scour the internet as all the news reads grim and can become overwhelming.
I hope this information has helped anyone who has been curious to our plight. When you see my postings or run into me in person and are wondering how I am doing, just know this. Yes I am tired, very tired. Taking care of my wife is an honor; I love her more than anything in the world and will move mountains to insure she is cured from this disease. Adding to all my regular duties and hers as well is beginning to take a toll. But I am positive, we are very positive, my spirits are high, I cannot allow myself to become reactive and negative. If there is anybody in this whole wide world who can single-handedly kick cancers ass it is my wife! If you have met my wife then you know all of this to be true.
So we move forward together as we should through life; Positive, Proactive, with nothing but success and the future of this family on our minds.

images-18

Eyes open, heart beating……

theycallmebetty4 Comments

When you look at your significant other what or who do you see?

Our daily existence grinds, wears and changes who we think we are, what we think we see, and how our minds perceive ourselves and those around us. Life has a way of giving you little moments to reset a thought process, unwind a feeling or empower a minute. Yet many times our ego, or self involvement will not allow us to see, and therefore we fail to recognize a second in time where we could reset our thoughts, our direction.

Last night after finishing laundry and making lunch for my high schooler, my sorry butt finally hit the hay around 11:00pm. Taking a deep breath as I assume we all do when our tired bones hit the mattress my thoughts were about nothing more than settling into another episode of the Sopranos as I have taken up the series from season one. Clicking all the right buttons and waiting for the screen on my iPad to flicker alive my eyes gazed across the sheets to my wife. My tired heavy sad face casts upon her as she lay, peacefully sleeping, her face swollen, puffy, like she went ten rounds with a prize-fighter only to get stung by a swarm of bees on the way out of the ring. Insult to injury.

She was smiling.

That is right, the whole world is crashing down around her, Leukemia is making her its bitch and she is smiling in her sleep. Now I know she is in misery and there is no earthly explanation for this insane facial distortion. The hives, itching, redness ruling her every moment for the last two days has been nothing short of maddening. Round after round of Benadryl, two pills every four hours resulting in an inability to stay awake. Her days just melding one into another with no real relief on the horizon. Yet she smiles slightly.

Staring intently I wonder what she is thinking about in her dreams? Is it September and her doctors telling her she is cured once again? Is she hugging her children without fear of catching a common cold? Is she riding her giant draft horse, hair grown back long and flowing, blowing in the breeze? Is she relishing in proving me wrong, about something, anything? Is she sitting on a beach holding my hand drinking beer laughing the way she does when I do something stupid? Does she know something I dont know?

At the very moment my eyes locked on her face my heart was overcome with joy. Why? Because she is mine.  She keeps apologizing to me for this blip in our lives and I tell her she needs not apologize, it is what it is and we will beat Leukemia. She wont beat it alone, we will beat it together. This woman, who is tougher than hell, meaner than a ferret when cornered and will drive me crazy in an argument with this uncanny ability to twist my words into a mess of spaghetti that even I can’t understand, is mine all mine. This thing called marriage inadvertently has highs and lows, struggles and triumphs.  She has given me so much, teaching me to be a better man, a good father and showing me the importance of constantly giving to others.

She tells me she hates the way she looks. No hair, no muscle tone, and she keeps losing weight. All part of the process I say. The funny thing is, I dont see it. When she smiles, it warms me, when she hugs me my heart still beats fast, when she holds my hand and walks with me, I feel like if anyone even thinks about looking at her funny it is all over for them.

So as I look at her, while she lays there sleeping, I quietly thank her. Our marriage will not be an easy one, there is quite a road ahead for us to climb.  I could sit here and complain about all the bad things that have happened in my life, cry about the hard times (and sometimes I do, because well you need to get things off your chest) that never seem to end from my narrowed perception. I look at her with all she is going through and there she lays, smiling.  Life gave me a moment to recognize, I did and and it seems that even with this disease our life together is pretty damn great.

Maybe that is why she is smiling?

When I look at my significant other, what do I see?

I dont see Leukemia

I see Love…….

It’s just not fair….

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Where to begin?

A year ago (March 31st to be exact) I wrote a story on this blog about a woman beginning to smile again. I had aptly named her journey in a series of blogs; The Face of Leukemia. The Face was my beautiful wife Jacy and leukemia was on the ropes. Jacy was still ill, but she was fighting hard and it showed. Leukemia was losing..

This fight lasted until May 13 when I wrote another story on this blog in reference to “The call”.  Leukemia was gone, her body clean, a smile permanently returned to that sweet face.  Jacy won, she kicked Leukemia’s ass and did it the only way she knew how, with faith and a smile on her face. She then spent the next several months battling to rebuild a body stripped of strength and muscle tone.  She spent many nights frustrated, angry at an inability to focus, remember, and keep simple tasks straight.  Jacy remained determined to finish her teaching credential and did so with the usual grit and tenacity that I fell in love with so many years ago.  It was not easy by any means and a few times we butted heads over what was best for her during this time of recovery.

August came and a teacher regained her classroom, starting a new school year off surrounded by children she loves, her colleagues and a purpose.  Our family regained their daughter, mother and wife. It hasn’t been easy, nights worrying if “it” will come back. The slightest hint of a sniffle or sore throat brings mind gripping fear.  Her brain turning, churning wondering if she was just tired from a long day or has “it” returned? Is she really angry with me and the kids or is fear crippling her emotions again? Is that sweat or fever induced paranoia? Five years clean we just need to make it five years clean and then ten! Yes if there is any human being on this earth that can not only meet but exceed these expectations it is my wife! The former face of Leukemia.  The face of victory, the face of WINNING! The face I love….

Enter Thursday March 12.

Earlier in the week prior to a simple operation to help with her ongoing iron deficiency, it was suggested she report for a standard blood draw.  This would give doctors a good baseline prior to the operation.  Within a day, results were in and the operation was off. She was to report on Monday for a bone marrow draw, further testing to confirm or deny what the numbers were showing. Stay calm I said, don’t worry I said, it will all be fine, you will be fine…..

Thursday March 19

Like a bad dream it rolled in disguised as a Honda Odyssey; at the wheel one spouse returning from work. Once again just as before while working horses I was about to receive the news. She walked slowly towards me as I saddled a horse for one of the boys, touched my arm gently upon reaching me and asked; would you care to go for a walk? The blood drained from my body as I knew.  Like knowing a relationship is over, or the police aren’t at your house, knocking on your door selling tickets to the annual ball.  I knew! I knew and asked her to just spit it out anyways. The look in her face, the light dullness of her eyes, and the sound of her voice slightly cracking. She let it all out. “It” was back…

I knew.

Leukemia had reared its ugly head once again. It wanted a fight and brought a few friends with it this time.  According to Jacy’s doctor some of the cells looked different, so more tests were in order. She had until Monday. Four days to get herself and her life in order. Four days is an eternity and not enough time all rolled into one. She told me two days later it felt like an imposed prison sentence and these were her last few minutes on the outside.

We talked for a while about moving forward, and staying positive. Deciding when to inform our immeidiate family and how to tell our children. We hugged a lot and agreed that keeping life as normal as possible for the children could only benefit them during this time. Not that anything was handled improperly last go around, but we now have experience with what to expect during the many transitional phases of this journey. The eldest children were notified first with Cody agreeing to come home for the summer.  The little ones were told the next day as to get them through the school week without incident. Everybody did their best to put on a brave face, but really no child should have to do such a thing when it comes to their mom.

Jacy and I set about trying to schedule things out over the next few months. This fight, this new fight was going to be harder, viler while wreaking greater havoc on her body over the last time around. It wasn’t just going to be chemo therapy either, a bone marrow transplant, talk about stem cells and living at Stanford for up to four months. This was for real, no easy cake walk for any of us, but especially for my wife.

Parents stepped in, friends have stepped in, and we are continually surrounded by some of the most gracious people I have ever met. I don’t know how to handle it at times, my manners not so contained. I have never been good at asking for help, my demeanor has always been one to help, one to fix, one to be there for someone else. Accepting or asking for help then standing aside has never ever been a strong point for me.

But I am thankful, so very thankful and with only being one week in, I am already exhausted. Not that I have anything to complain about, because I don’t. We have up to 5 more months to go, a routine will emerge and I will settle down, letting go of certain responsibilities, solely focusing all my efforts on our children and my wife. I don’t know how I will ever repay the love and support shown my family, but I will find a way and do my best to carry forward this giving spirit. Thank you all so much, my chest hurts thinking about the magnitude of it all…

Jacy started Chemotherapy on Tuesday the 24th. As before with a smile on her face, surrounded by wonderful nurses at Kaiser who remembered her and her endearing spirit from less than one year ago. One nurse cried when she found out Jacy was coming back. She felt for sure it was over the first go around, and upon seeing the name was overcome with emotion. She is one of our favorite’s nurses and there are many. The hospital and staff are simply amazing. Being in the business I am it is hard to leave my loved one in someone else’s hands, but here there is no doubt. Her light shines brightly upon all who come in contact with her, doctors and other nurses stop by just too say hi, check in on her and have a little conversation with the patient who smiles so brightly. My wife is truly one of a kind, it is humbling what she brings or gives to everyone she touches.

The sad reality of it all; Jacy sits in a room with no where to go, listening to machines all day long, she cant roam to far, cant be outside for too long, is tied to a rolling I.V. cart with up to five different medications pushing through her veins at one time, and with it each day brings a new level of sickness. She has Wi-Fi, Trivia Crack, Words with Friends, books, family and friends on call. But all she thinks about is her life at home, feeling no control over its future, what’s happing in her absence, missing out on interactions with her children and wondering when she will regain control of that life.

It is breaking my heart.

Nurse Betty….

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

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

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

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

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

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

Scared you didn’t I?

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

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

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

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

It is love….

 

 

 

 

Leukemia’s house of horrors!

theycallmebetty5 Comments

Unknown-8

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

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

Alkylating Agents: 

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

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

Antimetabolites:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She will have kicked cancers ass.

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The Face of Leukemia (December 6, 2013)

theycallmebetty1 Comment

THE HILLS ARE ALIVE WITH THE SOUND OF MUSIC!!!

Unknown-2

The joy, laughter and excitement of a young woman twirling, running and singing!

Yes that is the way I feel right at this very moment, for you see the woman I love has been given a bit of a reprieve! There are many unknowns in life but today we worked only on the “knowns” and the news was good, no great! News that our family needed to hear, and it was glorious!

So like a young woman in love, running across the Austrian hillsides, Betty is giddy with excitement! For you see this woman, this friend, partner and wife was told today by her doctor that she will live! She will live! SHE WILL LIVE!!!!!Unknown-4

Ok all funny drama aside, truth be told we went from a 5 year window two days ago to a 10 year window of survivability today! That ladies and gentlemen is huge! This specific strain of AML Jacy is carrying is the MOST treatable of all its ugly little counterparts.  No other abnormalities within those strains were detected either wich makes her chances for a longer happier life much more realistic. Tears of joy as my wife can now rest easy with the knowledge that barring any unforseen infections, relapses or just plain old crappy circumstances this woman, this mother of four will see all of her children grow up! For me personally that is exciting news to say the least. No one has spoken of remission yet but as strong as my wife is that is not out of the realm as far as I am concerned.

But through all the happiness, the baby steps towards recovery, the hard-fought singular battles.  There lies an undercurrent, a feeling for myself of  helplessness as I watch her slowly wither away (yes she is losing weight) unable to walk around the floor we are currently on without exhaustion. Suffering through boughts of diarrhea and nausea. She currently can’t eat because of sores in her mouth, a side effect of the chemotherapy. She doesn’t deserve to suffer like this, no one does, but especially my wife.  I want to carry this burden for her more than anything. Ease the struggle, take away the pain, remove worry and doubt. I want to do that for her, I need to do that for her and yet, there is no way for that to happen.

Her hair is finally starting to fall out and no matter how much I joke about it, or promise her she will remain the most amazingly beautiful woman I know, she is worried. Not for herself but for me, for her children. You see what she fears is it will scare the kids and I wont find her as attractive anymore. What she doesn’t understand, what I seem to have failed in all my attempts at communication throughout our marriage is; I see her from the inside out, I have always seen this amazing woman from the inside first. Now don’t get me wrong, my wife is incredibly beautiful on the outside as well!  But what makes her attractive, what makes those eyes shine so bright or her smile gleam under a mid day sun? It’s the radiance of her soul shining through.

So how do I convey to her that hair or no hair, skinny or fat, in shape or not, there is nothing that will ever change when I look deep into her eyes. The feeling I get while holding her hand, or the nervesnous still encasing me when she leans for a kiss? She needs to know, and I mean know that we will walk this path together, side by side and I will carry as much of the burden as humanly possible.  Fighting cancer is a WE thing, not a ME thing. No one fights alone, no one! And when that someone is the one you love, that trust, that honesty shared between you both from the moment you said “I do” throughout the years evolving and growing until this very moment, is exactly what the two of you use to lean on each other and make it through!

Thanks for letting me get that off my chest, that was little bi-polar moment huh? Happy then somber, well then lets get back to happy shall we? 

Now where was I? Oh yes, THE HILLS ARE ALIVE WITH THE SO- Oh to hell with it! We are KICKING CANCERS ASS!! YEAH!!!

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