Category: AML

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.

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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!

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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.

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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.

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A little stronger one day at a time.

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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…..