38. Chemo #6 - The Wall

I keep telling myself this is SIX of twelve doses.  This is TWELVE of eighteen weeks.  But the truth is - none of my positive help talk makes me feel less like....well, shit.

My white blood cells are extremely low.  Close to zero.  Meaning, if they don't come up - there will be no chemo next week.  I am on HEAVY steroids and adding more fruit to my diet.

You've heard of  'roid rage?   Yeah, that happens with me.  I get really volatile and angry on high doses, and I don't sleep.  Which is why I find myself up at 11:30 pm blogging instead of on my third hour of sleep.  (Plus I'll have to pee about seven times tonight - another glorious side effect of chemo.)

I've felt rotten this whole week - it's taking longer and longer to recover, and with six more treatments that scares me to no end.  I've already cut my hours down and per the doctors orders quit any exercise until chemo is finished other than very slow walking.  It's awful to feel so weak and powerless and crappy.

Yes, amidst it all I DO still feel fortunate and lucky and blessed.  My coworkers are amazing.  And I truly, TRULY have the greatest group of friends anyone could ask for - the constant outpouring of love and support is beyond a miracle for me.  I thank you with all my heart.

It's tough some days.  The doctor lied - Paclitaxel is not an easy drug.  At least not for me.  But I think of chemo a bit like skydiving - it's thrilling, and I'm grateful for the opportunity.  But I've "been there, done that" and I intend to walk away a healthy woman and hopefully never have to do this again.  Fingers crossed.

37. Five things about Chemo #5

1) My doctor came in and said, "I saw your facebook! Such a great hat with the hair! And I saw your parents. You get your eyes from your mother. You get your body from your father." I laughed out loud and he panicked - "is that okay to say that?" I laughed again. "You speak the truth, Dr. Fatoni!"

2) Shem had to take his mama to the hospital so he was out today - my first visit without Shem. (Saying prayers for your mom, Shem Sojeva) DJ took me instead, which was awesome as well. He gave me the tour of places to go when you need a spa day as we drove back towards the base. Notes taken!

3) The doc came in towards the end of chemo and said, "Nikki, we have a problem. We forgot to charge you for the chemo drugs during the last visit and they will be on today's bill, so it will be much higher. I am sorry. It was a mistake."

"That's okay." I replied.

He continued to explain, "Someone just didn't put the code in. It wasn't intentional. It was just an error." I'm thinking to myself - is this guy used to dealing with Karen? Cause I was totally fine. People make mistakes. He continued to explain and I finally convinced him it was all right.

I started to wonder how many hundred of euros this was going to be on my bill for the error. It doesn't matter. It's life saving drugs. But still - I think it was like fifty dollars.

Think about that. To someone in Kosovo, that is a HUGE amount of money. A week's salary for the lucky ones. It actually made me shed more than a few tears because I'm as lucky as I am.

4) Last week we picked up lasagna on the way home so I wouldn't have to eat in the cafeteria or microwave something. Doused it with balsamic vinegar. Why? I don't know - it just really sounded good at that moment. I think it absolutely freaked the waiter out - but I was SUPER happy with how it tastes and gave him a nice tip, so when we dropped in today and placed a to-go order, he didn't say a word and included a side of balsamic vinegar for me. (Chemo is giving me the weirdest cravings - seriously, I can't even begin to describe the weird things I want to eat lately)

5) Paranoid Assassin - if I haven't told you about our on-game version of Paranoid Assassin, it has been life changing. Forty people take on secret identies and are given a random target somewhere on a base of 4,000 people. You have to "take them out" with a provided whiffle ball and then you inherit their target.

EVERY TIME I leave my room, or walk to the restroom, or walk to work - I'm looking over my shoulder waiting for death. I narrowly escaped an assassination attempt this weekend.

It. Has. Been. Awesome. Days aren't as boring and redundant as they were - anyone walking on base could be after you - and best of all, it increased mask usage (at least among the players).

So much fun. My assassin is outside on the porch kitty corner from mine as we speak. Waiting for me to leave my room. What she doesn't know is I'm watching her watching me, and next time she steps in for a toilet break - I'm going to sneak out and flank her from the opposite site.

Mwhahahahahahahaha. Updates to follow.

My not so secret assassin

36. Happiness is....a new hat

Two amazing things happened today...

1)  THE MASSAGE PLACE OPENED TODAY - I can actually get a massage on base again in the middle of these awful chemo body aches.  It's the BEST thing short of a long hot bath - which we don't have anywhere here on base.  So I'm celebrating.

2)  BEST PRESENT EVER!  I got a package from my sister Wendy - who knows I've been missing my pigtails in a big way.  And so......she crocheted some for me.

 Voila!

HUGE hit across the base - but mostly, I'm just loving it.

35. Pacitaxil - Chemo Round #4

My doctor has repeatedly told me the new drug will be much easier on my body than the last three rounds, but I still have quite a lot of anxiety going into the latest round of chemo.  Everyone responds differently, so there's really no way to know how easy or difficult it will be until you're in the middle of it - and though that should logically eliminate the need for worrying in advance, it doesn't.

Monday night I gave myself the shot of pre-chemo steroids prescribed by my doctor, but I really should have asked for more guidance.  Does it matter WHERE I inject it?  He said it wasn't intravenous, so I figured any subcutaneous fat pocket would be fine - but the needle the pharmacy sold me is OBVIOUSLY an intravenous needle because it's four inches long.

I stare at it for awhile and build up some courage then jab it into a squeezed fat roll and I'm done.  

Well, that wasn't so difficult.

Four hours later I'm laying in bed and I wake suddenly - EVERY part of my body is asleep and waking with those painful tingles you get when your leg or your arm sits for too long.  It's one of the weirdest things I've experienced - to have that quite literally over my entire body at the same time.  It feels like I'm being electrocuted in my own bed.

I wonder if I injected incorrectly and this is my punishment.  Would steroids do that?  I don't know and Google won't tell me, so I get up ridiculously early and head to work, unable to stop my brain from running amok.

Shem picks me up for my appointment and we head to the hospital earlier than usual.  He can tell I'm nervous, so he does his best to distract me on the ride - then drops me off at the doorway right on time.  Because we're starting the next phase of treatments, my doctor needs to do advanced blood tests and a full ultrasound scan of my internal organs and breasts.  Usually you do them a few days ahead, but he tells me since I'm driving so far away we can do it all at the same time.  

Blood draw - easy.

Ultrasound - they use half a bottle of gel and give me two tiny paper towels to clean myself up.  I laugh as the doctor walks out because I secretly packed a towel for JUST THIS REASON!  HA!  

The tests are all good and chemo begins.  No nasty red drug, but still - another few hours of I.V. poison working to kill the cancer cells running through my body.  I try reading.  I try drawing.  I can't concentrate on anything.  The doctor comes in and tells me from now on he doesn't think I should be doing my own injections and prescribes pills instead.  I shrug.

In a few hours, I'm on my way back to work.

The side effects have been different - I've been far more nauseous than before, and the body aches are terrible.  I still have that weird "all my teeth are aching" pain the second night - but it goes away with some tylenol enough for me to sleep.  A little.

This is really what it's like living with cancer every day.  It's not terribly exciting or amusing - it's a daily mystery about what's going to hurt, how tired am I going to be, will I have any energy, will I be able to eat, etc.  

I have eight more weekly sessions of the new drug - I hope the effects aren't as cumulative as the first set, but I'm prepared to weather it if it is.  I made the choice when this started that I'd get through this - and I'm not about to get half way through and STOP being overly protective and dedicated to my recovery.  There are too many things I'm looking forward to - I won't give up on that.

34. A New Kind of Pain

I was sitting casually in my office having a perfectly normal conversation about sky diving, wet bulb devices and the evils of cheese on one's digestive tract when the following exchange took place:

Me:  (scratching an itch on my head)  OW!

Boss:  What's wrong?

Me:  That hurts.

Boss:  What hurts?

Me:  My head.

Boss:  You have a headache?

Me:  No.    (I remove my little cotton chemo hat)

Boss:  OW!

Me:  What?

Boss:  Get a little SUN today?

Me:  Yeah, five minutes - why?

Boss:  Your scalp is a tomato.

-------

Five.  Minutes.

Think about places on your body that have never seen the sun before and then imagine you'd accidentally burned them to a crisp in five minutes.

It's like somebody up in the sky was playing with a magnifying glass and my glowing white scalp was the allegorical bug.

#chemolife  #firstworldproblemsinathirdworldcountry  #weartheHAT

33. Capturing Life Jun 8 2020

These are my paintings.  They're more than a hobby for me - they've kept me grounded and sane throughout the turmoil of being stuck in Eastern Europe, the quarantine cycle of the pandemic, my father's declining health - being
able to focus on something mindful and relaxing has been amazing.

The more I look at them, though, the more I find they're something of a parable for my life.  Step back and it's an absolutely beautiful painting -
but under close scrutiny, you'll see that I started with a paint by number kit.  A drawing on canvas with lines and colors to guide you through the
creative process.  Look even more deeply and you'll see all the places where my painting falls outside the lines - either because my hand was shaking, or the lines were so tiny I had a hard time focusing on them, but most commonly because I simply chose NOT to stay within the lines.  I blatantly used a different color (or, sometimes accidentally) than directed because I felt
that's what it needed.  Sometimes I painted over something after it dried. Sometimes I painted it back to the original.  But because of these many
individual imperfections, my painting is wholly unique - a one-of-a-kind masterpiece with far more purple than the pattern asked for.

I don't focus on those little mistakes (or happy accidents as Bob Ross called them) - I take a look back and see how each one of those decisions
plays into the overall look of the finished piece.  Just as each one of the decisions I've made in life has, through happiness and heartache, crafted me into the person I am today.  Someone I'm proud of, most of the time.  I'm a work in progress - and always will be - but I see a much more complete picture when I look in the mirror than I did when I was twenty.  The
wrinkles and the age spots and the scars and the bruises - they're all part of my character and my intrigue.  I LOVE that.  I honestly do. 

So feel free to inspect and judge all you like - in the end, beauty and art are in the eye of the beholder - and I respect your thoughts and ideas and suggestions immensely.  Just never expect me to EVER completely submit to coloring within the lines.  Give me a good guide / example and I'll
willingly follow it to an extent - but I'm always going to be uniquely me. Slightly different, a little off, but loving the adventure each and every
day.

32. Facing Death, Choosing Life - 2June2020

I worked at Tuacahn Amphitheater during it's inaugural season many moons ago - I was young, but excited to be a working woman getting real "life experiences."  I'd had a fairly sheltered upbringing and it was truly amazing to be living the dream working in a professional theater.

As the Front of House Manager, I had a really good rapport with most of the staff.  One afternoon, the younger guy on the maintenance team (and I'm mortified that I can't remember his name when I can remember his face as clearly as day) brought me a box with a bird in it.  The bird had flown into a glass pane and fallen to the ground.  He'd seen it happen, and quickly picked up the injured animal and brought it to my office.

I didn't know anything about birds or veterinary medicine - I got a soft shirt for it to lay on, poured a small tin of water, and softly pet its head and willed it to live with every ounce of compassion and love that I had in my body.  I BEGGED it to survive and fly away.  I'm not even a huge fan of birds, but I threw every particle of my heart into saving this one.

But over the next 30-45 minutes, I slowly watched it die.  No amount of praying or crying or hoping or making deals with God could save that poor wounded creature - and when it passed, finally out of pain and agony, it took part of my soul with it.  I felt as though my heart would break because there was nothing in my power that I could do that would have changed the outcome.  I couldn't process this.  It wasn't right.  It wasn't fair.  I cried for HOURS.

Tonight, those feelings came rushing back to me about a hundred fold.  My Dad is drifting away - the result of a traumatic brain injury over a year ago that left his mind disconnected, and a lack of interaction and engagement during the pandemic isolation has hastened his decline.  He's been in and out of lucidity for awhile, but tonight in speaking to him and hearing him talk absolute nonsense had me nearly in hysterics.  I listened to his stories and didn't try to argue or correct him.  He told me about the soldiers on the 81 freeway, and how "his guys" weren't shooting anyway and because of that he was going to get to keep a Jeep.  But he likes the Korean tractor better.  Why aren't I in Brooklyn where I'm supposed to be?  Also, there's a squirrel on his bed attacking him.  (You get the point.)

Correcting him wouldn't have done any good - his brain isn't working properly anymore.  He hasn't been out of bed since December, and he's lost so much weight there's not much left of him at all.  And there's nothing MORE we could have done - he had the best doctors, the best care, and was well loved by all his kids and grandkids.  Jonette has been amazing over the past few years making sure his insurance was filed and covering his visits, managing the sale of his house, working on his taxes - making sure the only thing he had to do was rest and heal.  Except he didn't - no matter how hard we prayed and hoped and begged God to give him a second miracle.  (This wasn't his first death-defying brain injury.)

Tonight I find myself preparing for another part of my soul to depart with my Dad on his next phase.  I'm not sure when that will happen, but the care home doesn't think it will be much longer now. The borders and airports here in Kosovo are still closed - and though the embassy could get me home, it would seriously impact my treatment and potentially jeopardize my heath (the chemo has destroyed my immune system).

I love you, Dad.  I love you enough to stay here and fight for my future.  And although somewhere in your brain I know you know this, it doesn't lessen the pain and hurt I'm feeling right now.