59. Aftermath

 

Much has changed in the past week.

First of all, I'm OUT of Kosovo and safely ensconced in my sister's house in Germany.  I've got another week of required quarantine, but it's been an awesome week so far thanks to my sister's pre-planning.  I've made homemade tzatziki, swiss zucchini rolls, coconut shrimp - it's been a week of fresh fruit and vegetables without a SINGLE use of the microwave.  I feel like I'm in heaven after 8 months of eating in my barracks room.

Secondly, there's a BATHTUB - although i haven't been able to take one yet due to the third degree burns I suffered during radiation therapy.  They got much, much worse after my last treatment - the skin turned black, and blistered in other places - and the pain has been so great I can hardly walk around.  But after a week, it's starting to get a little better and I managed to get a full night of sleep for the first time last night.  There is DEFINITELY a bath in my immediate future.

Thirdly, Fluffy.  She's not Princess Peanut, but she's been my constant companion for a week as we take walks during the day, snuggle at night, and share treats at the table.

But how do I FEEL?  Well, there's been so much pain from the burns I haven't really thought about it.  Lucky, most of all.  Very fortunate.  Grateful.  Still searching for my new purpose, but I've found my peace which is really what I hoped to accomplish over the past year.  I'm making a list of things I want to do - write a short series paper about my year in Kosovo, work on a book with my Uncle Larry (award winning author), get my house repairs done, visit Ireland to pay my respects to Barbara, etc.  Right now most of my goals are short term goals to help my sister (defrost the freezer, organize the pantry, clean the house, etc.) - but I'm looking forward to longer term things as well.  And it's nice to have that long term mindset again.

Being with my nieces full time is HILARIOUS.  For whatever reason, they listen to me as opposed to their mother most of the time.  So when I tell them no wifi/television until their chores and homework are done, they give me the look of abject depression - BUT THEY DO THEM.  And then I leave them in peace.

Not that it's easy with a 10 year old who is more stubborn than I am and a 14 year old going through all the teenage angst.  But it's definitely worth it.  When they try something I cook and actually enjoy it (or even if they try it and don't like it, it's a compliment), when they ask if they can help me with something, when they ask if I can help THEM with something.....there won't be many more years when it's "cool" to hang out with Aunt Knikki - and I'm really enjoying the time while I can.

Can't wait until quarantine is over and we can adventure  (and by adventure, I mean going to Starbucks for coffee with them - I'm not insane).

58. Week #5 - the end of the line

Well, that's it.  I'm done.  No more chemo.  No more radiation.  Just some pills I'll be taking for a good long while (pills that cause Uterine cancer and other issues, but nevermind that today...)  And i'm in a weird, weird place.

I'm not sure how I feel - this has been my primary focus for such a long time.  My PURPOSE.  And now, here I am with my whole life ahead of me and not sure what to do next.  Except that I'm making plans - LONG term plans.  Getting back to Broadway when it reopens.  Visiting friends and family when I'm stateside again.  Taking some pottery and stained glass classes.  

Plans.  It's a start.

This week went by pretty quickly - I spent a good deal of time with my dogs at the border inside Macedonia.  They are far too skinny to survive the winter, and though I can't save them all - I want to.  I really, really want to (except that one black one, who's a huge bully)

The radiation burns are FIERCE y'all.  FIERCE.  Like a sunburn on top of a sunburn that then gets sunburned again.  It's blistering and painful and no amount of "approved cream" seems to be helping.  But at least it's done.  So it will start to heal - and hopefully the swelling in my arm will start to diminish as well.  Radiation was DEFINITELY causing bad lymphedema.

Anyway.....today I cried.  I cried for my Dad.  I cried for Barbara.  I cried for Ben.  I stopped focusing on the treatment and started looking towards the future, but there are still some things in the recent past I have to grieve to move on.  Now I can do that.

This is the really weird thing.  

I'm worried that nobody will think of me now.

I'm no longer the girl with cancer.  I'm no longer on everyone's worry list (for which I am hugely grateful).  I'm no longer stuck in a third world country.  I'm just an average Joe working for the government out of Germany trying to get by.  Paying bills.  Working on my house.  Trying to survive the pandemic long enough to get back to "real life".

Shouldn't that be enough?  What is this drive that constantly makes me want to feel SPECIAL and DIFFERENT and SOMETHING?   

Like I said....I'm in a weird place.  But it's a cancer free weird place, and I'll take it.

57. Week 4 - part trei - Covid & Massage Therapists

I got popped for a random COVID test this week.  Oy.  I can still remember the last time I got one and how painful it was for hours and hours.

I showed up at the hospital at 8:00 and there were A HUNDRED PEOPLE standing in line without social distancing, most with their masks down below their chin.  I said, "Nope!" and sat about 100 yards away - then realized this was going to take some time, so I went and got coffee then came back, resigned to my fate.

But....I saw something wondrous.

THE MASSAGE TEAM IS BACK!  Now, this is awesome in and of itself, but Preveze is trained in lymphatic massage - so this is medically INCREDIBLY for me.  Suddenly, the prospect of someone scraping my brain cells through my nostril didn't seem like the end of the world.  (happily, they have gotten MUCH better at it and it wasn't nearly as traumatic as I was expecting)

We set up a time just after my work schedule ended and i got an awesome massage to include manual lymphatic drainage.  My arm is now half the size it was this morning and doesn't hurt nearly as bad.

Miracle of miracles.

It will take at least a week for the test results to come back, since they send them to Landstuhl in Germany for processing.  But honestly, I'm not worried.  I'm still isolated all the time - and I feel stronger and stronger every day.

(I even exceeded 8,000 steps today - so getting more and more active as the weeks continue)

One week remains of radiation and then, with any luck, I'll be leaving Kosovo.  I can honestly say that I'm so grateful for my time here.  I definitely could not have gotten through this year if I weren't sober - and dealing with things as they arose.  Kosovo has been a tremendous help for that.

Even now, when the beer garden is open on base  - it's not a temptation for me.  I'm not saying I won't have a glass of wine here and there - I very well might.  But I've conquered that particular demon  - and knowing how sugar affects cancer cells, I don't see the benefit of drinking if it's going to feed those little buggers.  I don't want to take this journey again.  

My hair is growing back!

56. Week 4 - part deaux - FOR THE DOG??????

 When I'm driving to Skopje every day, there is a dog (a border collie mix, no less) that sleeps at the border crossing on the Macedonia side.  Often I bring a small bag of dog food or treats and ask the customs agents to give it to the dog.  

On Wednesday, I drove through and held the small bag out of the car window and the agent looked at me oddly.

"What?  What is that?"

"It's for the dog."

"For the dog?"

<i point at the dog>  "For the dog.  Food for the dog."

"You spent MONEY?  ON THE DOG?????"  

<he gives me a generic look of disgust>

At that point the female customs agent that I see most days ran over and took it and thanked me with a big smile.

I have to keep reminding myself that they view dogs very differently over here - and in fact, it's been said that people will intentionally try to run over stray dogs because they are unsocialized and viewed as a menace.

There's also a pack of feral dogs that live just over the Macedonian border on the side of the road by a little "Car Wash" stand.  I'll often stop and drop food off there, since they mostly get food out of the garbage dump.  

I don't normally touch them - because they are filthy and unsocialized.

However....

On Friday, the car wash was closed and the whole pack was laying around relaxing.  So I got out and started pouring food.  ALL the dogs came over, wagging their tails.  One dog kept barking and scaring the other dogs away from the food (alpha dog) so I yelled at him and shook my finger and he backed away.  I called to the other (afraid) dogs and put more food down for them.

I even petted one -the one I nicknamed Goldie - he's often on his own, and wags his tail vehemently when I see him.  I let him sniff the back of my hand, and carefully gave him a scratch behind the ears.  His tail increased wagging tenfold.  So I called him a good boy and kept rubbing his head.

To which, the other (non-alpha) dogs immediately came over and tried to nudge his head out of the way so they could get head scratches.  Oh, it made my heart hurt.  I want to rescue them.  ALL of them.  I want to take them to the vet and get their hurts looked at - I want to bring them home and feed them and love them and let them sleep on cushy dog beds, especially as the weather is getting colder.  I want to save them all.  But I know I can't.

After CAUTIOUSLY scratching the four dogs, the alpha dog walked over to me and waited.  I was like, "Nope.  You're aggressive.  Not putting my hand near you."

Okay, I want to save them all except one.  I don't like bullies.  Even though I think some love would fix him right up.

I'll try and get a picture of them next week so you can see how sweet they are.  And how haggard.  And beaten up.  I WANT TO SAVE ALL THE DOGS.  I wish I knew how - but there will always be more needing saved.  Save the ones you can.  Make a difference to THOSE dogs.

55. Radiation Week #4 - The worst week

The worst week possible.  I just....can't.

I can't even begin to process the loss of my beautiful and strong cancer buddy, Ben Hopkin, who passed away after an aneurism on Sunday.  When I spoke with him on video chat last week, he convinced me that he was going to beat cancer yet again - despite the fact that he'd defied the odds two or three times already and achieved miracles the medical community couldn't fathom.

But his journey came to an end Sunday night - and it destroyed what was left of my broken heart.  

I've written about him before, but Ben was one of those TRULY REMARKABLE souls - with a kindness and a vulnerability that he shared willingly with anyone.  He was a fierce advocate for any marginalized group and actively participated in protests for Black Lives Matter and Gay Pride, even during his cancer treatments.  He was a brilliant actor (he was one of the stars in the first thing I directed at BYU, Chicago) and director - and from what I've been reading from his students, a superb acting professor who could bring things out in you that you tried very hard to keep hidden from the world.  I'm overwhelmed at the love and grief that's pouring out on Facebook.

So I'm going to continue blogging about radiation - but recognize that my heart is really NOT in it.  It just seems like the world doesn't recognize what's been taken - even though I can see from the hundreds and HUNDREDS of tributes, that at least a small portion of it does.

Radiation went by smoothly and without much to tell - on Monday, my neighbor and friend Janice Middleton drove with me to Skopje.  On the way back, we stopped at an outdoor restaurant and had a really nice lunch.  It was such a nice change to have company - and to sit and chat and have a decent meal!  (She doesn't work on Mondays and offered to come along)  It was really good, especially after losing Ben, to feel that connection with someone - and to have a normal meal outside of my room.  Plus, it was excellent conversation for the hour drive to Skopje and back.

54. Radiation - Week #3 - More grief, and the unexpected consequences

 After burying my father last week, I started out week three completely exhausted.  I'd agreed to do some mentoring after work hours, though, so I knew there would be no rest for the weary this week.

On Tuesday night I heard that a much beloved friend had died in a tragic accident.  She'd slipped getting into the bath and knocked herself unconscious - we'd just been speaking a few days earlier, and it put me in a complete state of shock followed by 12 hours or non-stop crying.

I skipped radiation on Wednesday.  I hadn't slept a wink, I didn't want to do anything, I had a very impressive little pity party with myself.  Barbara was one of the most wonderful and genuine people I've ever met - and the most incredible artist I've ever known.  Truly.  And we'd been making plans to get together - so this was just devastating.

And in the midst of my little pity party, when I'm trying to avoid anyone and everyone - I get a video call from my friend and cancer buddy, Ben Hopkin.  He's been fighting his own battles through multiple different types of cancer and has been my inspiration and strength for this entire journey.  Again, just the kindest man you could ever hope to know - and he's calling ME from his hospital bed as he embarks on a life changing / medical journal worthy clinical trial.

He talked about his faith that he was going to make it through - and we both expressed how much love and affection we had for each other.  I think that's the one thing that cancer has taught me - no matter how confident you are in your recovery, tomorrow is never promised - eat dessert, say the things that you want to say even if you think they'll make you look stupid, take the adventure.  So it was a tear filled and wonderful conversation that I will forever be grateful for.

On Thursday, I went to my radiation appointment - still without much sleep and apparently GROSSLY dehydrated, because I fell asleep during the 10 minute treatment and when I stood up afterwards, I fainted.  Just BOOM!

And I realized afterwards - this must happen alot because they're always standing close by when I sit up and get off the table, and the one time I got off the table before they came back into the room I got yelled at.  (Liability and all)   NOW I UNDERSTAND.

I sat and drank about four bottles of water before I left, feeling foolish but absolutely fine.  I will need to monitor my water intake when the tears are flowing to be sure.

One more week down.  Two to go.

53. Radiation Week 2 - Overt Racism, Medical Complications, and Grief

So, here's what I can tell you about radiation therapy - for me, it causes a tremendous amount of heartburn.  The treatment doesn't hurt, although my chest looks like it's been through a really bad, inconsistent tanning bed for three times the maximum amount of time.  And I have broken out in a pretty weird rash similar to the one I got the last few weeks of chemo.

This week, though, treatment was especially difficult.  After months of being bedridden, and weeks of a downhill battle, my father passed away on Sunday, September 13th.  Even though it was expected, and even though it was a merciful thing that finally removed him from this earth and the suffering he'd been under - it still caught me completely off guard.  I was beginning to think he'd outlive me - he was such a strong and vibrant character.  

Until recently.

When he couldn't get out of bed, and as such had to wear a diaper and be changed like a newborn - he couldn't remember how to use the remote for the television or his cell phone.  He wasn't "Dad" anymore - and even though I continued to call him EVERY day and talk to him, long after he lost the ability to talk - I still loved him and it broke my heart to know that the world continues spinning when such a man has left the earth.

One day this week I was just not feeling up to driving - I've been crying my eyes out and have been completely dehydrated - so Shem offered to drive me.  The border guards told me it was no problem at all, as long as he had a KFOR badge (which he does.)

On the drive to Macedonia, he started telling me about the history of the region and why everyone hates everyone else.   It's not just religious differences, it has to do with countries taking over countries, genocide / racial cleansing, and simple overt racism - feeling that citizens of certain countries are frankly LESS than themselves.

Macedonians hate Albanians and Serbians.  The feeling is apparently mutual.  Everyone hates the Turks.  But nobody is more hated than the Roam  (a.k.a. Roma - the gypsies).  Honestly, he went into great detail about the history between countries but I don't remember much of it as I hadn't had much sleep all week.

When we got to the border, Shem showed them his KOSOVO ID rather than his KFOR ID.  I love Shem, I really do - but he has a tendency to stir the pot, if you know what I mean.  So OF COURSE they weren't going to allow him through without proving that he had a COVID test within the last three days.  That's the rule.  He knows that's the rule.  Only AFTER they called the supervisor over and started yelling at each other did he pull his KFOR badge out, and by then they weren't going to let him through regardless.

It was a really interesting lesson in cultural racism, but not one that I was particularly grateful to learn ON THE WAY TO THE HOSPITAL for therapy.  Folks, it got ugly.  But eventually, we made it through and continued on to Skopje - late, but no worse for wear.

On the way BACK through the border, he AGAIN flashed his Kosovo ID.  (I'm about ready to throttle him at this point) and AGAIN started a huge argument.  So lesson learned - Shem will not be accompanying me to Macedonia in the future.

As for medical complications - oh my.  The reason I asked Shem to drive in the first place was because I was super tired, and worried that I had developed a blood clot.  See below:

Can you see the difference?  It's NOT a blood clot, thankfully - but the lymphedema was a surprise since I haven't had this happen since they removed the lymph nodes in March.  APPARENTLY, radiation therapy often causes this to happen.  

This would have been nice to know BEFOREHAND.

It's actually quite painful, and a big problematic since I'd gotten rid of my compression sleeves when I hit the six month mark with no issues.

On the bright side - I have zero wrinkles on that hand thanks to the swelling, so there's that.

49. Nuclear Bone Density Scan - 03sept2020

My doctor called me early this morning - I've been struggling to find anyplace that can do a nuclear bone scan, which is a requirement before starting radiation to determine if your bones are strong enough to withstand the prescribed doses.

Unfortunately, Macedonia isn't doing them at present ("try us again in a few weeks, and then maybe"), the private clinic in Pristina that did them closed down when the physician died of COVID, and everyone else I called said they don't have the equipment.  Hmmmm.

So back to my phone call - the doctor says, "My friend is the head of Nuclear Medicine at the University in Pristina - I need you here in an hour."   I jumped out of bed and ran up to logistics to borrow their car, and Shem offered to drive since it was in Pristina.  I thanked him and we quickly headed to the public hospital at the University.

Once there, they explained that they were going to inject me with contrast - except it wasn't just contrast, it was RADIOACTIVE contrast, so I would have to sit in isolation for 3 hours until they could do the test and then stay away from people for 24 hours.  Shem agreed to wait outside, and they gave me the shot then put me in a waiting room FILLED WITH OTHER PEOPLE who were also radioactive.  When I would get up and walk around, the nurse would shake her finger at me and send me back to the waiting room.

I want to be as respectful as possible because I AM living in a third world country - but I also have to be honest.  The hospital was gross.  It was run down, it was in disrepair, it was dirty.  It was NOTHING like the private hospital I've been receiving treatment at, which is right next door, and definitely opened my eyes as to how lucky I am.  I only took a few photos - but here's what I mean:

After sitting for three hours trying to socially distance in the tiny waiting room, I went in for my scan - which took about 15 minutes.  Super easy.  They scanned my whole body and sent me back to the waiting room.

Only about 10 minutes later the nurse came in with the report - the waiting room was empty by then, and she handed it to me and said, "Your bones are fine.  Except your knees.  This is because you are obese."  

Matter of factly.  No judgement in her voice whatsoever.

"Yep."  I replied.

"Do you have any questions?"  the nurse asked.

"Where do I pay?"

"Pay?  You don't pay.  You had a prescription from the doctor."  she shook her head and walked out as if I were crazy.   (I get that alot, by the way)

So there you have it - a $1400 scan - no cost because they don't charge at public hospitals.  Not that I would have minded - I DO have good insurance, but they wouldn't accept it regardless.

On the way home, I was absolutely wiped out.  The radioactive contrast destroyed me - I have never been more grateful to have Shem along because I don't think I could have safely driven.  I sat in the back seat (still radioactive) and fell asleep on the drive home.  Then headed back to my room to socially distance until my 24 hours was up.

The way is now clear for radiation therapy.  Although I PRAY there's no more radioactive stuff required.  We'll see how it goes.