The good, the bad and the ugly

A little late, but finally getting time to post.

Today was round 4. It’s been 12 weeks now. This week gave me both good news and bad news. And hey, some ugly too. I’d ask which you want to hear first, but, this is my story, shh 🤫

The good…

At my last followup appointment, I was told they’ll be getting in touch for a consult because I’ll likely need radiation five days a week for six weeks after the chemo. I immediately started crying – that’s a lot…. – and for three whole weeks I’ve been trying to figure out how I’m going to manage this with work (oh yeah, I also started a new job last week and have to be in an office two days a week and working from home the other 3).

And not only am I balancing a new job, but the chemo pain, extreme fatigue, family, home lifing and really just life itself. I’d have to hope they can do appointments after 5pm. And then not be around at dinner time with the family.

Hold on, I did tell you this was good news though.

In this most recent appointment, the PA said, “oh, sorry, the oncologist and I were reading your chart more right after your last appointment and we were thinking of another patient that needs radiation, not you”.

Besides that statement being about as comforting as a fish hook pillow, it’s still good news no matter how we got there.

The bad…

Every three weeks I get blood drawn. This blood draw immediately started out wonderfully when the phlebotomist went to scan my hospital wristband and I mistook her barcode scanner for a forehead thermometer and awkwardly leaned my head into her like a dog begging for ear scratches.

She politely declined my accidental request for head pats and reached for my wrist.

But anyway, my serious point was that these blood test results were a bit wonky. Lots of lows, including my white blood cell count, which is not good.

For anyone who may not know, it basically means my immune system is shot. Besides the two days a week at work, I’ll pretty much be quarantined from public places. Even the slightest cold can become dangerous.

Tonight was supposed to be date night (you always feel like a million bucks for 24 hours after chemo, so we thought Friday nights would be perfect date nights)

We were supposed to go to St Augustine to dinner and my favorite bakery, but given my new numbers, cancelled and stayed in and played games with the kids.

We definitely need to come up with more ideas for family nights and date nights in the house. Please please please drop some suggestions in the comments below if you have any! It was one thing when the whole country was quarantined. It’s a lot harder to come up with ideas when it’s just me/us.

The other night we did an at-home painting night with a YouTube tutorial and had a lot of fun! Robert and I even had a glass of wine each, even though neither of us really drink, but it felt like the real deal!!

Oh, and the question I keep getting… what happens if my white blood cells keep dropping…

If the count continues to drop, they said they’ll need to give me a shot and patch that helps my body produce white blood cells. If they go too low, they have to stop chemo.

The ugly…

This “chemo rash” on my face, man.

Other News

At my chemo session, the dietician stopped through to check on things. Robert was fast asleep in the corner (chemo has become naptime for us… because of my medication cocktail…. and because of Robert’s….well, because of Robert’s unrequited love for naps)

She quietly asked me how I was eating. I told her what I thought was decently truthful. I told her I eat plenty* and explained some of the things I’ve had.

Robert wakes up from a completely dead, head back, yell-snoring sleep that I can only describe as something I once saw on a Discovery Channel special about bears in hibernation…and shouts, “SHES NOT TELLING THE TRUTH, SHE BARELY EATS!!!”

Completely ratted out by my own.

Ok ok ok, so I don’t eat a ton. After explaining what I eat, she just suggested eating more often and maybe trying to add one more protein whenever I have anything. Her examples were, “if you have crackers, add cheese…. Or if you have cereal, add milk”. Like what kind of dry-mouthed alien monster doesn’t already add milk to their cereal?

Ugh. Now on to my final topic. Emotional Meltdowns for $1000, Alex.

I’m A Toddler

Again, super thankful to Robert for being such a trooper when I burst into emotional flames with zero fire starter.

I cry at everything. Yesterday at chemo, I cried because she told me I’d have to get a shot. A SHOT?!

In the past three months alone….I’ve gotten blood drawn about 30 times out of my chest, my inner elbow, my hand, and once on the front part of my lower arm. I’ve had urinary catheters put in me twice while fully awake. I’ve had my insides gutted. I’ve had a catheter shoved up my groin to my lungs to remove a pulmonary embolism. And I’ve had a curvy needle jabbed into my chest every three weeks for 12 weeks and counting.

And my mind chose this moment for waterworks!? This moment where a sweet nurse said I might need a routine shot in my arm?!? 😂 Someone give me a high five and a lollipop.

(But what did Robert do? He grabbed a box of tissues and hugged me, no judgment and no questions asked 🫶🏼)

Oh, and the day before that? I cried because my paper towel didn’t rip on its perforation. And I’m gonna get ballsy here and admit that’s not the first time during all of this that a paper towel made me cry. And it probably won’t be the last (I mean, you’ve all shopped for them. 12=24 double triple dog dare what? 😭)

Overall, some days are clearly better than others. But all is good. Game night made my heart full. And at the current moment, Hayden has me crying from laughter, as usual. 💕

That’s all for now. Oh, and a couple people (even strangers) have asked me how to get updates… you can subscribe by scrolling to the bottom and it will send an email to you when I post (generally like once per week, nothing crazy.) Love you alllll. ❤️❤️❤️

*not actually plenty