45. Chemo #10 - Quarantine & Boredom

Monday morning we were informed that two women living in our barracks building tested positive for Covid-19, so the four women that live on my side of the building were all asked as a precautionary measure to self-isolate for two weeks.  It may sound frightening, but we really have zero interaction with them - so it truly is precautionary and completely understandable  based on the outbreak we're currently experiencing on base.

But it put a serious concern on whether or not I'd be allowed to travel to my Chemo session on Tuesday - after much debate and discussion, I received permission provided I drive myself and wipe down / disinfect the car completely when I return.  

The hospital was CRAZY busy when I arrived - even the small chemo room off the doctor's office had another patient (which has only happened once before).  He finished up as I was beginning, and then as I was finishing up another man was brought in to the second bed.  He was fully masked, but coughing and weasing horribly.  I think the nurses must have caught my terrified eyes because they immediately threw up a screen between us and I finished without incident.  Pretty normal day of chemo, actually.

On the way back, I stopped at the pharmacy for pain meds (since the pain has been pretty awful the last two weeks) and then at the local grocery store for some fresh greens.  My iron levels are super low and I've been struggling with it - plus I was running out of eggs, which is my guilty pleasure in the mornings.  The other girls asked if I'd pick up a few things - fresh fruit, mostly - because we're all basically stuck with MREs and whatever else anyone brings by to the barracks.  And here's where things went wrong....

I picked up some fresh peaches and tomatoes - but when I went to have them weighed, the guy wasn't masked up - so I signaled him to please put his mask up (he didn't speak English, I don't speak Albanian) and he shook his head no and laughed it off.   Keep in mind, it's actually the law to mask up in Kosovo - but nobody seems to heed it.  Kosovo is currently the hot spot of eastern Europe in terms of new cases, not surprisingly.

I motioned again for him to mask up and he again refused, so I went and found the manager and asked her if she would weigh them for me since she was masked.  She came over and....well, even though I don't understand Albanian I kind of got the gist of the verbal ass whipping he was receiving.  He weighed my fruit, then spent the next ten minutes unmasked following me around the store cursing me out in Albanian while I grabbed the few items on my list.

Then Celia's boyfriend Eddie showed up to drop off a few bags from her house for me to deliver (since base is still locked down tight) - and let me tell you, the sight of this tall, dark, intimidating, muscled guy giving him the stink eye of death for harassing me was all it took.  (Which is hilarious, because he's seriously the nicest guy ever!)

I packed up my groceries and headed back to base, where I was interrogated stringently before being allowed back on - and I found this very comforting to know that the lockdown is being taken seriously.  

Headed back to the room and returned to self-isolation, but with the added bonus of being able to socialize more than six feet apart with the three other women stuck on the same porch.  Four completely different people with different backgrounds, experience, likes, dislikes - but thrown together in a common situation and finding our commonalities and strengths.

And as if this update isn't boring enough - I'm writing this on Friday, which is normally the day I hit the wall and beg for death because of the pain - and yet, I'm feeling pretty good.  So I'm going to enjoy this super boring update - and this wonderfully dull week - and celebrate that there are only TWO more weeks of chemo left.   Let's pray for more boring weeks like this!  (Even though they make a very dull blog)

44. Chemo #9 - Confessions

Okay, I admit it - I'm terrified.  We were all tested for COVID this week, but the results have to be flown to Germany and then tested with the rest of Army Europe - so I don't know how long that will take, and when we can consider ourselves NOT infected (because we're only notified if we test positive.)

We had another death on base - nobody is talking about it, but I know because I've befriended most of the local nationals that work on base.  I know the laundry folks, and the housekeepers, and the shop workers by name - and almost all of them know my story and frequently ask about me when I'm walking to/from work.   Our latest casualty was one of the food service workers in the cafeteria.  I haven't eaten at the DFAC in over five weeks because I just felt like it was too dangerous with that may people and the open salad bar and all that.  (Yeah, I'm paranoid - and I'm okay with that)  So even though I wasn't exposed to him, I'm still devastated and frightened.  Anyone could be a carrier and not know it.

Before, I could tell myself I was just being CAUTIOUS - but now, with another death of someone not riddled with pre-existing conditions, it reminds me that we are so very vulnerable to this virus.  And my life is truly at risk - something I haven't really accepted on this journey so far because the numbers here on base weren't bad.

Now I'm isolated until the results for the rest of the team are back.  MORE isolated.  And afraid.  And in pain - oh my gosh, the cumulative chemo makes everything hurt.  (Three more weeks!  We got this!)

So I started to think of things that might be more exciting to share than the fear (but recognize that we all live in the Groundhog Day movie so there's not much to report) - and here's what I came up with.

Confessions from Chemo #9 - Things you Probably Don't Know About My Life in Kosovo

1)  There is an unofficial Taco Bell menu item named after me on base.  Why?  Because apparently I order the same strange thing every time and now they call them "Nikki Tacos" - can you guess what makes them unique?

2)  I love how my next door neighbor says "warsh" - as in, she's going to "warsh" the dishes.  And I incessantly mock her about it from an appropriate six feet away.

3)  I decorate for holidays - but since I arrived, I haven't taken any of the decorations down - so my office has Christmas, Easter, Valentines and Fourth of July decorations up all at the same time.  Plus a disco ball.  It's very festive.

4)  We have been living on MREs for over a week since the Cafeteria closed - fortunately, I anticipated this possibility and have a fully stocked fridge/freezer in my room as well as a microwave, toaster oven, coffee pot, egg boiler, and blender.  Needless to say - this is one area in which I am not currently suffering (as long as you like frozen Chicken Parmesan and Hot Pockets).

5)  No matter how hydrated I am, there seems to be only one nurse at the hospital capable of finding a vein in me without five or six tries - they've adapted her schedule to make sure she's there on Tuesdays for the next three weeks.  I totally feel like a VIP  (as opposed to the problem patient that they probably view me as).

6)  My hair is falling out again - or rather the short fuzz that I have left on my head.  I find something weirdly satisfying about running the lint roller over my pillow every morning - as if each one of those hairs is a personal triumph in my journey.  I have no idea why, but hey - if it makes you happy, just go with it.

43. Let's Talk About FRIDAYS

I'm reading through the comments on my last Facebook post - and I don't really recognize the person that everyone keeps telling me I am.  I don't feel brave.  I don't feel inspiring.  I just feel like a regular gal who's doing what she needs to be doing to get home to hugs, but who happened to get caught in a rather exciting series of events.

Except on Fridays.  Fridays I feel like the walking dead. Fridays is the day that chemo really affects my body the most - everything hurts.  EVERYTHING hurts.  Every muscle in my body feels like it's been pummeled by an angry mob then doused with acid and lemon juice.

I'm not going to lie to you.  I get cranky.  Really cranky.  Downright bitchy.  

So SHOUT OUT to my coworkers - who tolerate me on Friday (because they know tomorrow is a new day and I'll be behaving normally again) AND still manage to encourage me on this journey.

Sorry about Fridays.

42. Chemo #8 - I See the Light (and a wee bit of a rant)

Chemo #8 of 12

I can honestly say I see the light at the end of the tunnel - it's still far off, but I feel it close at hand and that drives me this week.

It's been a rough week here in Kosovo - we're back on lockdown, as we've got multiple cases of Covid on base.  The cafeteria (DFAC) has completely shut down after several food service workers tested positive, so everyone on base has been issued MRE's  (Meals Ready to Eat) - they are just as appetizing as they sound.  

On top of that, Shem's mom has tested positive for Covid, which she caught in the hospital - so he and his son (who works at the pizza place) have been quarantined at home for two weeks.  The food court also had positive cases, including the lady who made my Friday Night Tacos this past week.  (The ONE meal I go out of my room to collect!)

The sad thing is - I knew this was coming.  Anyone who was watching the trend of people not wearing masks in town, the numbers of cases rising rapidly outside the gate - this can't be a surprise.  And I'm not angry about it, because this is something we're seeing worldwide.  People are TIRED of wearing masks and staying away from crowds and social distancing.  If the virus hasn't affected you personally, it's easy to think that it's all news hype and scare tactics and government control mechanisms.  Until it DOES hit you personally.

Guys, I'm not complaining - none of this has affected my life much because I'm already as isolated as one can be.  (Okay, so I'm not going to get my Friday night tacos anymore - but honestly, nobody is going to bemoan the loss of Taco Bell on a large scale)   It's just disheartening to watch - and to know that despite everything I'm doing - wearing a mask, washing my hands, staying away from everyone else, avoiding cafeteria food that's been handled by dozens of people.....there's still a risk that it could find me.

And I accept that - because sushi incident aside, I KNOW I am doing everything in my power to avoid it - to take care of myself - to get enough rest - to MAKE SURE I'll be coming home and collecting hugs from all of you that have been so amazingly wonderful not only in your kindness and emotional support during my cancer journey - but those of you that have been TAKING CARE OF YOURSELVES and doing everything you can to survive in these new and confusing times.  My heart thanks you.  

I KNOW it's hard.  I KNOW everyone is tired of taking precautions.  Do what you need to know - but know that this world is better with you in it - and all those things that you're missing and craving so badly right now WILL be there again.  Just hang on a little longer!

Okay enough about that.   Chemo #8.  

My white blood cells are good this week - the doctor is happy.

After starting chemo, for the first time, they bring another patient into the room to begin her chemo for the week.  I don't know anything about her or what kind of cancer she has - she doesn't speak a word of English, and we're both wearing masks on our face - but we still manage to communicate with our eyes a sense of support for one another.  Giving each other understanding and power and a feeling that we're truly not alone on our journeys.

When I'm finished, I take a deep breath and wait for the guys to pick me up.  There are four weeks of chemo left.  Four.  There is an ending in sight.  My heart feels a little lighter.  I'm thinking about life post-chemo.

On the way back to base, my friend Preveza (the massage therapist) messages me and says they are shutting down tomorrow - but she'll stay late if I want to come in and get a lymphatic massage.  She's done miracles - the seroma in my armpit has gone down from the size of a softball to hardly noticeable at all thanks to her work.  I head there when we return to base and tell each of the therapists to take care of themselves while they're away because they are a bright spark of self-care in this changed world.

Back at my room, I know i'm not going to sleep even though I'm absolutely exhausted.  That's normal for Tuesday nights.  I'll be up six or seven times thanks to the fluids - but I'm just restless from all the chemicals.  Most Wednesdays I'm up at dawn and heading to work early - and I know a decent night of sleep will come Wednesday nights.

Understanding the routine has been helpful.  Painting has become meditative for me - and tonight I finished one of my favorite paintings to date.  As I'm working on them, they take on a life of their own - and usually about half way through, I know who this painting is meant for.  On this one, I knew before I began - it was an absolute act of love, and I'm so pleased with it.  

Now for those of you who mysteriously find yourself with one of my paintings, please note that I do NOT expect you to hang it up over your fireplace and gaze at it lovingly for the next twenty years, praising my not-quite-Michaelangelo skills.  It's just a small way for me to say, "Hey, during the worst trials of my life - this is something that I made for you, because thinking of you while I painted it brought me peace and gratitude and joy during those times."

Sending you all much love.

41. Kelly Preston and Sushi

Actress Kelly Preston, wife of John Travolta - with millions of dollars and access to the best care in the world died of breast cancer today.  If you think that's not completely freaking me out, you'd be dead wrong.

Nothing in this life is EVER certain and NO day is guaranteed.

Maybe having cancer is a blessing because I'm constantly reminded to tell people how grateful I am for their love in my life - and recall the lovely way each of them have changed it.

But I'm seriously freaked out today.

-------------------

Last week we went out to lunch at a sushi restaurant just outside the gate.  It was the day after chemo and I was feeling pretty good and ACHING for anything outside of the normal Groundhog Day life that I lead.  So my boss, my coworker and I jumped into the car and headed out.

As soon as I got there, the owner tried to fist bump me.  I declined.

I looked at the table, and it was......not super clean.

The silverware was.....not super clean.

There was a hair in my sushi roll......OBVIOUSLY not mine (since I have no hair).

And though we were the only people in the restaurant, I kept thinking - what an epitaph this would make.  "Died because she wanted a sushi roll"   I literally felt like one of those people in the news that DRIVE ME CRAZY.  "Hey, I went to a Covid party and caught Covid - DON'T be like me!"  "Hey, I celebrated spring break with 40,000 other teenagers and caught Coronavirus - DON'T be like me!"

I'm angry at myself for the betrayal.   I've spent four months meticulously protecting myself.  Attending no social activities.  Going from my room to my office and back again.  Eating in my room and avoiding the cafeteria.  Wiping things down like a paranoid immune system compromised freak of nature.  Doing EVERYTHING that I can to keep myself healthy during chemo.

Only to put myself potentially at risk.  For sushi.

Granted, I LOVE sushi.  I really do.  And the parts I did eat were a delicious change of pace from the same things I've been eating every day for four months.

But nothing is worth putting my life at risk for after so much diligence.  I won't do it again.  I will worry for the next two weeks, but I will spend the remainder of my time in chemo (ONLY five more weeks now) staying true to my ultimate goal of survival.

At the same time - I'm writing a will.  And thinking about power of attorney.  And planning for the worst potential outcome.  Because if it could happen to Kelly Preston.....

40. Someone else's Story - BEN FIGHTS TODD

So the thing about having cancer, is that you tend to bond with other people that have cancer - because they understand the pain and frustration and fear that you're going through.  One of my sturdiest rocks during this journey has been Ben Hopkin.  If you don't know him - let me tell you a wee bit about his story.

====================================

Ben goes to Disneyland.  Ben breaks his back.  Ben discovers he has cancer.  And.....action:

God:  Happiest place on earth.  Probably a good time to tell you - hey, here's Stage 4 cancer.

Ben:  I will name it TODD and I will VANQUISH Todd from my body.

Doctors:  Absolutely!  We've got you!  Let's vanquish that bad boy!

<grueling tests and treatments>

God:  I see your Todd and I raise you even more  cancer!

Ben:  I shall name it WAYNE and I will VANQUISH Wayne from my body.

Doctors:  Got your back, bro.  Absolutely!  Oh, we will have to remove your kidney and give you a bone marrow transplant and isolate you for a few months completely unrelated to Covid.  But hey - we've got kids that need to pay for college!  Let's do this!

Ben:  HA!  I am in recovery.   I am using my time wisely to march for equality (in full PPE) for all people of color, gender and orientation!  My work is not done!

God:   Hmmmm.  The force is strong with this one.   Congrats on your recovery - as a little housewarming gift for your new bone marrow, here's a gift - MORE cancer!

Ben:   I shall name it TODDLER, for it is small.  And I shall VANQUISH Toddler from my body!

Doctors:   Dude, what did you do to piss off God?  Or maybe he just really, really wants you home?  You sure about this.

Ben:  Absolutely.  My work is not done yet.

Doctors:  Then neither is ours!  Let's go, Ben!  We will write articles and journals about you and your journey!  Let's do this!

-----------

Honestly, I've been on this crazy ride since February 28th - although it feels like FOREVER, it's not even FIVE months yet.  Ben has been actively fighting for over a year and a half - and doing amazing things throughout.

But it's tough.  And though he remains undaunted in fighting for his future - I'm sure he could use a little love and encouragement.  Remember those small acts of kindness?  Those everyday miracles?  Send one Ben's way.

And read his blog - https://benfightstodd.blogspot.com - BLOGGERS LOVE COMMENTS - it means someone cared enough to come to the site and read your story.   The entry of him breaking his back at Disneyland (which is how he was initially diagnosed) is amazing - his tenacity is inspiring.  But mostly, he's just a really, really good guy - and the world is better with him in it.  So let's remind him of that!

(this is Ben with his dog Kimo)

39. Chemo #7 - Party time

Chemo #7 -

Let's start off with good news - my white blood cells were up to 600 (as opposed to 3 last week) so no more nasty steroids all week! YAY!

I drove myself because Shem had urgent family business to attend to and we're pretty short staffed now that the borders are open and DJ has left. It wasn't as terrifying as I thought it would be because I've watched how Shem navigates the crazy traffic patterns. But I didn't realize just how much concentration it takes to drive in the madness - and I was fully exhausted by the time I got back.

On the way home, I was reminiscing about happier times - and thinking about the night before I went into the hospital to have my tumor removed. It was the LAST karaoke night of the KFOR26 group before they headed home and were replaced by a new group of national guardsfolk.

Facing an uncertain outcome, I admitted I was having surgery the next day as an excuse to sing something I would never otherwise have been brave enough to belt out - "She Used to be Mine" by Sara Barailles. One of the most beautiful songs ever - and exactly how I was feeling after two years of rediscovering myself.

They were kind, as they always were - so many familiar faces, who's voices I could pick off the radio based on tone (or lack of tone) and who's smiles had shared my Thursday nights for months.

At the end of the night, just before J.D. shut it down - one of the guys (and I'm embarrassed I don't even know his name) got up and looked at me and said, "This one is for you. Kick cancer's butt." And then he, and the rest of the room burst into an altered version of Toni Basil and sang, "Hey, Nikki!"

It remains one of the happiest moments of pure kindness at a time when I was absolutely terrified.

I missed the beginning when everybody was screaming and singing - but here's a small snippet - little miracles happen every day.

Today, if you have the opportunity without putting yourself in danger - be the miracle someone else needs. Random act of kindness. Make someone's day. Send an email to someone you haven't talked to in far too long. (Or a video from your favorite drag queens - Steven Stewart, I'm looking at you!) Make these moments part of your legacy.