Month: April 2015

Today just sucked…

theycallmebetty1 Comment

Watching someone you love in pain, brings no greater torment within the soul.

There are times in life when feeling absolutely powerless is a step up from the darkened depths your heart is traveling. Seeing my wife emerge from the doctor’s office today, I expected a curt; fuck that hurt! (yeah every now and again the surly farm girl comes out) Or I am so tired of these gosh darn biopsy’s! Then we grumble a little about her elderly shuffle, a result of having someone gnaw on her hip bone with a needle and make our way slowly to the car.

But today, today was a knife to the heart! She emerged, spoke my name and instantly I knew something was wrong. Her voice cracking, lip quivering, and then tears. Tears streaming down her face as she informed me her biopsy couldn’t be completed because of severe pain.  After several if not close to a dozen or so biopsy’s, I am pretty sure her pelvic bone is done with this shit! Having taken the appropriate pre-meds prior to our arrival, then a dose or two of lidocaine, followed up with a few more doses of lidocaine, followed up with the maximum amount of lidocaine prescribed for a woman her size.  It became very clear to her and her doctor this just wasn’t going to happen.

It also was an awakening in that Jacy’s body’s had enough for the time being. Not good timing as her biggest fear for the moment centers on the Leukemia’s progression. We need to know what her cell counts are to create a plan of action.  Putting off another few days until a different course can be plotted only exasperates her anxiety.  The despair in her voice, the emotion on her face combined with an inability to do anything (something I am not good at handling) and my heart was breaking for the woman I love.

Walking slowly to the car; all I could think about was my love for her and wishing it was me, not her. Helping her into our car, my chest was hurting, she cried, took a deep breath then cried some more.  It was a quiet, somber ride home. Helping her upstairs she gently laid upon our bed and quietly slept.  Beat up, bruised but resting peacefully.

The appointment will be rescheduled so Jacy can be sedated through an I.V. to complete this procedure. It will still suck but at least she will be knocked out. Hopefully all this will happen later this week.

Today was just one of those days you close your eyes, say a little prayer to calm the nerves and rely on faith.

images-1

A fork in the road..

theycallmebetty1 Comment

Fighting Leukemia is filled with many turns and twists. Today is one of those days. This morning Jacy and I are headed to Kaiser for? Wait for it??  Another bone marrow biopsy!

images-2

We have lost track as to how many biopsy’s she’s had up to this point. But rest assured it has been enough times I am pretty sure there is a permanant point in her back marked “Pin Cushion”. Now if you have never had a bone marrow biopsy, you really dont know what you are missing when it comes to this little treat! So let me give you a little break down! Tale of the tape as it were….

A bone marrow biopsy and aspiration can be done in a hospital, clinic or doctor’s office.

The procedures are usually done by a doctor who specializes in blood disorders (hematologist) or cancer (oncologist).

The bone marrow exam typically takes about 10 minutes. Extra time is needed for preparation and post-procedure care, especially if you receive intravenous (IV) sedation. The total time for the procedure is about 30 minutes.

Before the procedure

Your blood pressure and heart rate will be checked, and you’ll be given some form of anesthesia to keep you comfortable.

Most people need only local anesthesia, as bone marrow aspiration, in particular, can cause brief, but sharp, pain. You’ll be fully awake during the procedure, but the aspiration and biopsy site will be numbed to reduce pain.

If you feel anxious about pain, you may be given an IV medication so that you’re either completely or partially sedated during the bone marrow exam.

The area where the doctor will insert the biopsy needle is marked and cleaned. The bone marrow fluid (aspirate) and tissue sample (biopsy) are usually collected from the top ridge of the back of a hipbone (posterior iliac crest). Sometimes, the front of the hip may be used.

Bone marrow aspiration — but not biopsy — is occasionally collected from the breastbone or, in children under the age of 12 to 18 months, from the lower leg bone.

You’ll be asked to lie on your abdomen or side, and your body will be draped with cloth so that only the exam site is showing.

Bone marrow aspiration

The bone marrow aspiration is usually done first. The doctor makes a small incision, then inserts a hollow needle through the bone and into the bone marrow.

Using a syringe attached to the needle, the doctor withdraws a sample of the liquid portion of the bone marrow. You may feel a brief sharp pain or stinging. The aspiration takes only a few minutes. Several samples may be taken.

The health care team checks the sample to make sure it’s adequate. Rarely, fluid can’t be withdrawn and the needle is moved for another attempt.

Bone marrow biopsy

Your doctor uses a larger needle to withdraw a sample of solid bone marrow tissue. The biopsy needle is specially designed to collect a core (cylindrical sample) of bone marrow.

After the procedure

Pressure will be applied to the area where the needle was inserted to stop the bleeding. Then a bandage will be placed on the site.

If you had local anesthesia, you’ll be asked to lie on your back for 10 to 15 minutes and apply pressure to the biopsy site. You can then leave and go about your day, returning to normal activity as soon as you feel up to it.

If you had IV sedation, you’ll be taken to a recovery area. Plan to have someone drive you home, and take it easy for 24 hours.

You may feel some tenderness for a week or more after your bone marrow exam. Ask your doctor about taking a pain reliever, such as acetaminophen (Tylenol, others). ~Mayo Clinic

Sounds like fun huh? Dont let all that sugar coating fool you! It hurts! It hurts real bad! I mean I dont know personally, but from what I have witnessed given the choice of a shank to the gut or a bone marrow biopsy well lets just say Orange is the new Black! Unfortunatley bone marrow biopsy’s are a necessisty when determining our next course of action. We are hoping for encourging results so Jacy may take that next step in the process with a minor surgical procedure needed prior to her next round of chemotherapy; thusly leading us back to the steps of Stanford hospital and a bone marrow transplant.

If the numbers from the bone marrow biopsy are not encouraging then it is off to Chemotherapy land anyways. Then her doctors will push the transplant a little further down the road. This of course would not be the optimal postion for recovery.

So give us a few good thoughts and prayers as the biopsy is never pleasant. We will drive over, telling bad jokes, talking about the future and anything else that removes fear of this upcoming procedure from our thoughts.

ribbon

Each day is a gift…

theycallmebetty4 Comments

Every day we travel through a world filled with the unknown. Our existence centered on being over here at a certain time, over there later in the day, a meeting with friends, or hustling constantly checking our electronic organizers. Our lives intertwined within the movements of a clock or the expectations of others.

How many times have we sat down at the end of an evening to utter these words; where did the day go? How many days in a row before we recognize the week is over and we mumble the exact same sentiment; where did the week go? The insanity of it can be mind-boggling as we continue placing an emphasis on agendas. Lost is the importance of our life, what it means to us in conjunction with the gift of having another day. Forgetting about finding a moment during each one of those days that resonates, becomes a memory or a topic for conversation. Real conversation too, not a text or Facebook posting.

George Strait has a song that always helps me slow down and remember that each day is a gift.

Just walked down the street to the coffee shop

Had to take a break

I’ve been by her side 18 hours straight

Saw a flower growing in the middle of the sidewalk, pushing up through the concrete

Like it was planted right there for me to see

The flashing lights, the honking horns

All seems to fade away, but in the shadow of the hospital at 5:08

I saw God today..

I’ve been to church, I’ve read the book, I know he’s here but I don’t look, near as often as I should

His fingerprints are everywhere, I just look down and stop and stare,

Open my eyes and then I swear,

I saw God today…..

And so it goes.

With everything happening in our life, it can become easy to be angry. Today I had a wonderful conversation with a friend about all that is happening in my life. I wonder why I am not angry. It is easy to just say you are not angry when you really should be; placing the classic stoic face on this bump in the road instead. But I just can’t find any anger inside to dwell upon. God has given me so much, God has given us, my wife and family so very much. In a life where blame is the first bony finger pointed out of malice. Who would I blame? Who could I blame? Why would I waste the time and energy? It is what it is, even if that “is” sucks!

There is a plan for all of us. Whether you believe in a God, no God, a higher power or some form of spiritual awakening. There is a plan. I have always believed our lives have some purpose, some meaning and it is up to us to find what that meaning is. We can travel through life as I explained above, with blinders on and no recollection of any real purpose or need, never finding or fulfilling moments of remembrance and that is fine, if that is all you want out of life. To bad really, since you only get one shot at it. But for me, I know through hard work, an even temper, leaving my eyes wide open to all possibilities the plan will reveal itself. Being angry at the cards dealt does no one any good. Play those cards instead and believe victory is yours.

So we move forward with a positive attitude. All will be fine, we will rise above and walk away from this emotional roller coaster ride with our heads held high. We will hold hands through old age, cherishing our children, our grandchildren and laugh. Laugh at all the memories, laugh at all the little moments, laugh at beating the odds, beating so much sorrow that can arise from these situations, laugh and thank God for all that we continue to have placed before us..

Today I …

Saw a horse nuzzling a newborn foal

Saw my children laughing at nothing, and everything all at once

Watched as my son rode through a practice really well

Stared at my mare grazing in a pasture of green surrounded by other mares ready to foal just as she is ready to foal. The miracle of birth waiting to arrive.

Rode one of my favorite horses and it brought peace and contentment to a tired soul

Visited with friends celebrating a birthday, laughing, joking and having a really good time

Watched my son’s friend look like he wanted to ride a horse, while being too shy to ask

Talked with my daughter after her game of softball, listening to her tell me about it filled my heart with joy.

Played Legos with my youngest, creating cars to battle an imagery foe.

Hugged my wife, kissed her beautiful bald head and melted as she smiled at me

Feel blessed for everything I have.

Sitting here staring at my computer, looking at the mountain range behind my house I know;

I saw God today.

images-3

A little stronger one day at a time.

theycallmebettyLeave a comment

It has been a pleasant last few days.

Jacy is feeling a bit better, although she tires easily and can’t seem to get enough sleep. Jacy has been strong enough to venture out and watch her daughter play softball, take a trip to the store on her own and even drive herself to the doctors on a few occasions. Her cell counts continue to rise and everything looks to be on track for the next phase. It is nice to see my wife with color in her skin and a smile on her face.

Monday we have another bone marrow draw, determining which direction she will go in regards to further treatment. Hysterectomy or another round of chemotherapy, hence another 7-10 days in the hospital. This whole process is slow and steady. We all know slow and steady wins the race so all fingers are crossed.

Many people have come by the house, checking on our family’s wellbeing, while hoping to catch a glimpse of my wife. It still leaves me speechless as to the outpouring of love and compassion shown our family. We are truly blessed and the spirit of goodwill will indeed be paid forward.

Someone asked me the other day why I write so openly and freely about what is happening with our family. This person couldn’t understand how sharing all the private details was beneficial to anyone; that it would embarrass this person to have people, even strangers know everything so intimate about their life. I assured this person I don’t write about everything that is happening as some portions need privacy while other portions are either to disturbing for discussion or provide quite a visual picture. I choose discussing the emotional toll as opposed to citing visual references. For everyone can relate to emotions associated with the human condition when referencing such an event.

Writing has also allowed me to answer everyone’s questions in one simple forum. Instead of answering a hundred phone calls or numerous texts, blogging has given us the freedom to let all we know what is happening and when. It is like a virtual bulletin board for all to see and interact.

Through this process I have found a voice, for you see when you look up Leukemia, its symptoms, research, web pages and blogs, everything revolves around knowledge, diagnosis and the patient. Not many pages dedicated to the family leukemia effects. We have a say, we the family have emotions, fears, questions and nightmares. Yet we are not anywhere near the circle of trust when it comes to answers. When writing my very first page back in 2013, I wrote out of fear. Like a new probationary firefighter walking into his assigned station for the first time, I had a million questions, a huge responsibility, a fear of the unknown and the knowledge that no matter what, I needed to prove myself worthy. Someone depended on me!

In 2014 we survived three chemotherapy sessions, numerous hospital runs, countless emergency room visits, and many long nights holding her hand as all seemed hopeless. Temperatures, allergic reactions, swelling in places you never thought could swell to such an extreme, hives, night sweats, day sweats, the inability to stay awake, the inability to fall asleep, stomach issues, skin issues and so on. Living through sorrow filled moments and walking amongst the clouds as her doctor told us she was in remission.

2015 has brought us right back to square one. Hearing those dreaded words; it (leukemia) is back.

So as I said; I have found a voice. But I have decided it is not a voice for myself, but for anyone else who finds themselves holding their Leukemia ridden significant other or family members hand in the middle of the night. For that person of support who finds themselves alone, the only one standing between the people they love and utter emotional chaos! When faced with so much responsibility, endless reams of information, knowing you need to be strong but don’t know how. I hope and pray that person sees my blog and has the courage to ask me for help. This is a community, Leukemia has a community and even though we don’t carry this cancer we should be doing our best to support one another, so we may be stronger when it comes to supporting those who do carry this cancer! It is just the way I feel.

In my last blog post a woman left me a comment about her 39-year-old husband who’d just been informed he has Leukemia. They have children and her note felt fearful. I hope with all my heart she received my reply. Letting her know I would be here if she needed help. That is what this is all about. Building a bridge of support for all of us “support systems”.

As always I love all of you who continue to show us love and support.

More to come…..

There is light..

theycallmebettyLeave a comment

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

theycallmebetty4 Comments

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…

theycallmebetty3 Comments

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…….

Leukemia still sucks and sucks and sucks some more…

theycallmebettyLeave a comment

The days have come and gone like the wind that currently howls over our house at this very moment. Hard and fast air lets out then slow, easy almost comforting in a way it rolls back around.

Leukemia is a strange, strange beast. This form of cancer takes over your blood, choking the very life-sustaining cellular composition that travels within your veins. Chemotherapy or five specific chemicals to be more precise, drip into your system neutralizing this mutation as it grows. After five or so days strapped to an I.V. stand you are monitored for a few more days while blood is taken daily to register the effect this deadly poison does on your system. Then as your white cell counts drop (the main target) to almost nothing leaving you susceptible to even the most timid of colds, germs or traveling organisms you are sent home from this hospital incarceration to rest, relax and well, basically begin to feel as though you are dying.

But wait there’s more!

Blood, glorious blood, my feeling on this after watching my wife decline into a pale white almost vampirish state is you begin to crave this gooey red substance. For you see without almost daily transfusions at first, your blood becomes nothing more than an empty, nutrition less liquid that can barely carry oxygen to the brain.  Chemo-drugs continue to kill everything within its juicy red make up. No white cells, struggling red cells, no life.  Transfusions bring new platelets (Platelets, also called “thrombocytes”, are blood cells whose function (along with the coagulation factors) is to stop bleeding.) and blood. Without transfusions, these chemo drugs would have essentially done their job, killing off all white blood cells, leaving you a deathly shade of white, unable to fight infection and terrified to bump even the slightest object for fear of bleeding to death. No energy to walk, no energy to breathe, no energy to live.

The next few weeks after the first therapy session are spent going back and forth to the hospital. Blood draw at 8am, test results by 9-930 then either another day of sleeping due to a lack of energy or a glorious blood transfusion.  Now it sounds simple enough doesn’t it? Blood draw everyday and like having your car run low on fuel, just pop in and fill er’ up! I havent seen the bill yet, but I am pretty sure blood is more than $2.99 a gallon.

But what happens if you are allergic to these transfusions? Well our Miss Jacy is just that, (way to always be an overachiever huh?). So now instead of an easy-peasy morning or plug and play as it were, we stroll in to our own private room (thanks to the really killer, or shall I say bad-ass nurses at Kaiser who really dig my always smiling wife) and the count down begins.

Zyrtec to fight the histamine reaction needs to be on board prior to any fluids

Benydryl to cover an additional reaction that happens sometime after the initial infusion

A bag or two of blood to redden things up a bit! Oxygen rules!!!

Oh and a bag of platelets… Now these are not just any platelets either mind you, no no! These are carefully washed, plasma free platelets (Platelet Light I prefer to call it) made just for Jacy to minimize any allergic reactions. Oh and beware they need to be used quickly for they only have a shelf life of 4 hours!

Funny story the other day my poor wife was in the infusion clinic and hospital from 0930-11:30. Why? Because the delivery service from San Francisco a meer one hour and forty minutes away just couldn’t seem to get her platelets to her in under four hours! Hmmm seems to me that might be a tad bit important, huh? The response for such tardiness? Stuck in traffic. I call balderdash. But that’s neither here nor there .

So now she is all topped off, tune-up finished, low and behold no wheel chair needed to exit the hospital, no shortness of breath detected upon exertion and she feels as though she could run a marathon! Blood, Blood, amazing blood. Since blood is red, I believe I shall start referring to my wife as Ferrari! Sexy sleek thing that she is.

The long and the short of it? This is where we are right now in this whole process. There is much more to come, including a wonderful all-inclusive trip to Stanford University a bit later on.  I promise to tell you all about it! I hear the place is all the rave!

I wonder if I could get a blood transfusion after a weekend of rodeo? Hmmmmm???