Neulasta Fail

In the beginning, I was traveling to my doctor's office 3 times a week, during treatment: actual treatment, the day after for a Neupogen shot, and Friday for lab work.  

The shot was the WORST part of the whole ordeal.  It was large, painful, caused occasional nausea and frequent bone pain, bruises on and around injection sites, kept me up at night, and stuck me right in the gut every time.  I needed it, though, to help stimulate my body's infection-fighting powers, my little neutrophils-white blood cells which help me stay healthy (or healthy-ish) during strong chemotherapy.

In the beginning of my cancer fighting era, I hated this thing.  I had to lie down to get the shot to my gut. I wanted to skip this devil, as it seemed that I was one of the patients who had it the worst with the minuscule step to the entire process .  

 My current doctor opened my eyes to a possible cause of why this immuno-booster might have been so dreadful for me in those days: back then, I was 33 years old and otherwise healthy.  I had lots of white blood cells.  Stimulating my bones to grow more was like forcing a full stomach to eat a whole pizza.  It was going to hurt, but I would need the extra supply as treatment started to get down the road and my body began to weaken.  The pain was all in trying to build a storage.  

These days, Neulasta, an on-body injection system for this drug has made the process much easier.  I experienced it on Chemo #4, and had it placed on my abdominal area on Tuesday.  Easy-peasy.  

 Could it be?

Couldn't possibly be for me.  

As I was dressing for my day in Corona Classroom lockdown, I heard a tiny clunk on my bathroom tile.  And, what did my wandering eyes behold?  

What was happening on top of everything else? 

As I searched the floor in the area behind which I was standing,

the problem became clear.  

That alien to my body

decided to jump-ship from my stomach and not give me the meds I needed to grow my bones.  

There it was, still blinking its green light, ready to release in 5 or so hours, but no longer attached to its host.  

We thought about attempting to put it back in, but once that baby's out--it's out.  

Like what seems to be going on in the world around us, things are not what they should be.  

I was promised this easy delivery of medication,  keeping to the isolation protocols + 

corona social distancing.  Not so!

I was nervous about the olden-times.  I didn't want that big, painful, ancient-of-days needle all the way from the past of 2013 to be part of my cancer-fighting present, but I caught the beast in my tiny hand and trudged back to the cancer clinic, expecting the past to creep back into my modern life.   

When the nurse unloaded the injector out of the box, I realized something I had not before:

that big, beastly needle has changed in the last decade.  

 It was much less painful, even in needle form than the needles of my cancer-fighting beginning of days.  

I'm back to kicking cancer to the curb with a new weapon.  

BTHO CANCER!!!!

Chemo #5-Luck o' the Irish

After having appointments pushed back twice, dealing with insurance mess-ups, receiving fluids and a blood transfusion, and entering Covid Pandemic 2020, I finally was well enough for Chemo #5!

My regularly-scheduled driver's son was feeling sick with a cough and fever, and we didn't want to take any chances, so my father-in-law drove me to treatment and my mother-in-law wrangled the rascals while we were gone.  It was a lovely chat with this guy, while it lasted.  The Benadryl coma hit pretty hard.  It didn't get much of a chance to catch up on cancer updates or much of anything. Apparently, the most important part of making it through today's treatment was a positive pep rally, some authentic love from my peeps,  and some restorative sleep. 

 Usually, a major chemotherapy treatment, one that has taken much work to accomplish and is late in the schedule is enough stress to the body and mind to handle.  Of course, that doesn't seem to be how things go in my world.  Not only was this Tuesday a day for chemotherapy, where we unsure about a possible worldwide virus and its implications, St. Patrick's Day 2020 was the first day of Corona Elementary in our school district.  My children were very late to class, as this chemo was a LONG one, and there was much to set up.  Stephen had to step in as Elementary teacher, after a full day of his real job, and I was not feeling up to taking over after getting home from chemo late in the afternoon.  It was a rough day in the Cooper house, but chemo was done and down to one.   

It's been a long road getting down to the last of this one, but we are on the way to seeing the light at the end of the tunnel.  Not much in the last few weeks has been going according to plan, but we are still going and still fighting,

praying,

hoping,

striving,

working,

plan-changing,

laughing,

crying,

learning,

and trying to forgive and love each other along the way.   

Zombie Apocalypse

Like a zombie, taking in blood for the very first time.....

With the finances squared away, schedules set, and a driver for me and caregiver for my children, it was time for my first blood transfusion.  All the while, I was praying that this would work to get me ready for the infamous Chemo #5.  

"Annie" joined me.  It's a "Hard Knock Life" for her, too.

My driver dropped me off at the same hospital downtown, to the same building in which I had brain knife radiation.  Much of the world is in a different paramedic situation, a different virus, but eerie, none the less.  As we quarantine and hoard everything-toilet paper, hand sanitizer, salad mixes to survive and become rich when we soon change into the new American Caste.  There is power in being able to 'spare a square.'

I was there on time, feeling hopeful.  Met my nurses, Bren & Cheeto, (for real).  They reviewed my medical history and informed me that this would take another hour, or so, as they needed to do a complete test for my blood type.  "I'll bet you a million dollars that's It's A+ (a positive)." I bet them. 

They tested it anyway (something about company policy).  I turned out to be correct, but didn't get any cash for life.  (probably in that same handbook.). flucuening to to a caste system fluctuating on Charmin vs Angel Soft and others for currency for milk, gas, medications, and the right to be the only couple or family in using the movie theater.  

Finally ready for first blood (and to order off the human menu, in case the iron-rich cells didn't work or I had a bad reaction.  Or, maybe they would only let this zombie take in 2 pints. (My peeps did seek out one of the fullest pint they could locate: "From a great, bit, fat guy.  It will help you even more for the same treatment!  

We waited.  We laughed and cried and joked about Covid_19.

I still BTHO, virtually, [Social Distancing, and all,] other those jerks stealing our masks and medical supplies for health workers.  

Blood was great; just what I needed, and I had a long weekend to build some new cells to make me strong again and help me dig out.  It was just what I needed! 

HUMANS, get it together! Let's live better with less fear!

I'm over here fighting cancer,  trying to clean and organize, play and develop card games with my family, work on puzzles, catch up on DVR and Netflix.  Also needed to make banana bread and wanted to match my Mom's Delicious Chocolate Cake.  It was gone in 2 1/2 days.  Just what we needed!

Grandma and Grandma came to help care for my boys, who are out of school, sporting activities, and their regularly-scheduled life to keep them and others safe.  (Thanks, Corona!)  Our children don't have all of their devices ready for homework; they finish it at school 99.3% of the time.  We haven't yet downloaded the Chrome App to our desktops or Google Classroom to tablets.  That was a challenge.  

We got the prep done for The Cooper Kids' 1st online education courses and waited.  I had to go to chemo, and heard while there that many of the programs were failing.  It's a work in progress.   

BTHO Insurance

Sometimes challenges are just that-challenging.  Sometimes, you wonder how it could possibly be fair, the storm you're surfing with no ship, light, crew, awareness, or end in sight.  Then more complications are dumped on, while you have little energy to fix them.  

You think you have just enough hope and faith to ride out the tempest, and your lifeboat is destroyed.  

Your husband, who has rescued you, but only onto his rowboat, seeks out a new company for employment, one with less time requirements and less stress, so he can have more energy to captain and help your family afloat.  

All the little things keep swirling, but you press on.  As time marches on, you are so weak that you cannot get your head above water to get to the shore, find a bit of shelter, dry, and rest.  

You feel like you're losing YOU, along with many of the memories of what you know and what makes your life rich and blessed.  You are feeling lonely and like no one understands and everyone is tired of this and having to deal with it.  Yet, the storm keeps raging.  

You have a glimpse of some of the reasons why people decide that they are done fighting storms.  Feeling unable to move in this dark and long tunnel of despair, all the while losing the last remaining ounces of energy does not provide motivation.  Feeling completely alone, without even your own concrete and safe thoughts to buoy you and trying to hold on to faith and hope and do all the things you do to have even a speck of joy in the midst doesn't seem to be working.  

You feel like you can do nothing, you know nothing, you are good to no one, and it's all becoming too hard to do much of anything but drift off to sleep and hide drift out to angry seas.  

But, you can't.  Out comes another tsunami. 

This new job that Stephen has IS much less stressful.  He able to be the Mom I cannot from treading hurricane waters with sharks.  

**********************

We decided to use Cobra insurance for this remainder of year, so it would be basically the same, and we've already met the out-of-pocket deductible.  However, that company made a mistake, and my account had a new bill added, and my scheduled appointments were no longer able to be kept or made.  And now I had to deal with something that is DEFINITELY not my job, in order to keep a bit of hope together.

I prepped for a different battle, gathered my weapons, and went to the hospital.  And, thankfully, I have an army of amazing warriors there.  I have tried, in this battle, to be kind and Christlike and joyful and thankful and to use humor vs. anger, to ease tension and return to the fight, restored.  I greet with smiles, joke with university rivals, celebrate the holidays, pull out all the colors of the rainbow in head coverings, listen to their frustrations, share my story, and fight the battle I know I should.    

And, this huge  challenge ended up no being so time-consuming or damaging. I had all these skilled generals behind my lines, doing the work for me.  In a few hours, peace was restored, I could get my schedule back and add a blood transfusion treatment, which might bring me back from "mostly dead." In all the ways I was drifting out to that darkness.

And two generals on my front lines told me how grateful they were that I had figured this mess out.  They hadn't noticed it or didn't know what or why it was happening.  If I hadn't been there, in my diminished and saddened state, not sure if I had the energy to keep perusing more treatments, feeling lost and confused, and actually upset and frustrated, I might not have been the one to dig us out.  If I had not been seeking the joy and peace of the Lord in this battle and trying to follow in those ways, I would not have these warriors to help in the journey.  That insurance lighting bolt was a jolt of light.  When it was over, I was recharged.  Sometimes, those trials that feel as if there is no reason to keep on, are the very things that remind you that you are not walking alone.  

And, sometimes, instead of focusing on all the frustrations and pity and confusion, these flashes of hardships that shine bursts of outstanding light, call to even a fogged and damaged mind that you are known and blessed and ultimately delivered.

Delay #2 + Fluids

A week in nonsense and confusion gave me deeper compassion for those suffering with neurological conditions with no hope of recovery after chemotherapy.  Thankfully, we have hope that once this treatment is complete, and I've have some recovery time, that many of my regularly scheduled programs will return.

Being a naturally organized and capable human does not mesh well with the varying, and still somewhat blurry and terrifying chaos I find myself piecing together these last few days.  I don't know how long my chaos has been whirling in 2020, but long enough for me to hope to dig out.  And, with two more treatments, It is likely I will fall back in and have to dig out again.  We have discovered that this kind of foggy, extreme Chemo Brain can exaggerated when a patient has received numerous rounds of chemotherapy and especially one after brain radiation.  This is my first major chemo after firing up my brain, so it's hit hard.

I was confused.  I'm sure I confused everyone else.  Who knows what I said to people and in what tone?  Perhaps I will get a bit of a pass on any outrageous actions, as they were not completely under my own free will and agency.  I plead insanity!

Labs came first.
Then, the news that I was not having chemo......again.
Then, my friend helped take notes on Dr. Cole's advice and answers to Stephen's questions about this beast taking over his wife's sanity and how to get it out.  I was probably 40% coherent.

Luckily, we did try something-more fluids.  

Another big bag and an enormous chunk of the day, and I was on the way home to try to not die and not delay.  

  

The Upside Down

I did not think I would fall so far into the unknown.   I was told this time would be more difficult, as I'm older and my body is more worn down from more years of fighting cancer.  I'd forgotten that it's  been quite a moment since I've actually gone through real cancer.  It caught me up by surprise and had me barely holding on to reality.  

The start of what felt like living in an alternate dimension of my brain and the world began when I went in to have labs checked and meet with Dr. Cole.  I look back and don't even look like myself or like I am coherent. 

My bloodwork results were so lo, it was dangerous to have chemo.  We would try again in a week.  

Then, something went quite wrong.  Some kind of darkness and inexplicable doom.....being unaware of what was going on around me and having little to no memories of much at all.  

I am not the type of person that deals well with frustration, and not understanding why I couldn't remember a thing and why my husband and family wasn't understanding.  I was lost and confused.  I didn't actually realize there was a problem.  I did things like leave the stove and oven on.  Drive to pick up my children from school and be found asleep in the car, in line, all with no memory of those events.  My ability to safely navigate the world, or know that I was in it was low.  

I am just now starting to dig out of what feels like a deep hole, attempting to put together an idea of what's been going on for the past few weeks.  

One night, I woke up, feeling as if I was flailing around, held hostage and unable to move.  I was swimming through that dark hallucination of a nightmare.  In my head, I was sleeping on a hard bed, lost, crawling around in the dark, confused, lost.  

Then, I heard Stephen's voice, "What are you doing?"

The problem was I didn't know.  (Pulling all the blankets off the bed, trying to get warm on the floor, which I thought was my hostage wooden sleeping situation.  At the time, I was upset that he was

 thinking I was crazy.  

The rest of that night was much of this back and forth.  I was sick and coughing and attempting to wade through confusion.  

When I was conscious the next time, my husband and his brother were trying to get some healing fluids in me-trying to use their skills to access a vein with an IV.  I was not excited.  I absolutely HATE IVs, as my veins do not cooperate, and I hate the pain.  Thankfully, my husband is skilled and it was only bad for a moment.  (But, I look back on that crazy upside-down memories and don't trust them because I don't have my own recall of much of the time since my last successful treatment.  

I don't know what I've said to people, or all the things I've done.  It's terrifying not being able to use my brain in the way it should be.  I have a glimpse of how frustrating and debilitating falling apart can be.  

But, at this time, I wasn't fully aware that I was in this fog.  

It's hard to fight when you can't see or understand the enemy.