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

Stop hiding from me!

So, something I’m going to say… and maybe it will help everyone with any friends and family with cancer in the future…

We do not want to be any less of a friend to you because we’re sick. Your life and what’s going on in it is JUST as important as what we’re going through.

The number of times I keep hearing, “I didn’t tell you about it because you have enough going on”. Or. “I don’t want to complain to you, it’s nothing in comparison”

What I’m going through doesn’t “trump” anyone else’s struggles or bad days. I want to know what’s going on with you, too.

Unless you’re frustrated that your hair is getting too long. See another complaint department for that. 😂

But really. In all seriousness. Don’t hide your life or avoid seeking help or support or venting to me as a friend because of this. There’s a good chance you’ve been there for me at some point in my should-definitely-be-a-movie life, and probably continue to be, even in the simplest “thinking of you” way. So vent away! 💕

Cherry Slush Legs

Post-chemo day 3 has arrived, and so has the usual fatigue, nausea and nerve pain.

Something I’ve never had to do until recently is to elaborately describe how I feel, physically. Doctors and nurses are constantly asking about my chemotherapy responses and the effects I’m getting — and I’m so accustomed to just ignoring it, or just dealing with any physical pain without saying anything, that I have to stop and really think about what’s actually wrong.

I keep having to try to describe this leg thing to doctors. It’s like they just want to “officially” attribute it to an existing side effect and give it a “why”. But every nurse and doctor wants to know about it, so I’m constantly trying to find new ways to describe it to make sense.

So I have a new description.

Last night, Robert took us all to Sonic because I wanted a red cherry slush (cherry flavored anything is my weakness, don’t judge me). I gave myself a crazy brain freeze and thought, holy crap, this is what my legs feel like after chemo! Yes! A few days after each chemo, my legs feel like they have brain freeze (leg freeze?).

It’s like an internal pain, weakness and shakiness from within my legs that feels like I’ve frozen them and they’re thawing out. Except the thaw out is taking days and it’s constant pain… and putting my tongue on the roof of my mouth doesn’t fix it. Oh, and my legs aren’t actually cold. They just have the pain that one would associate with being really cold.

Does this make sense? Maybe I need to go back to the drawing board. Or maybe just back to bed.

Round 3

Round 3!

Round 3!!! Halfway point! (Hopefully) Disclaimer: they tell us to wear low cut/open shirts for easier chemo port access. I’m not intentionally trying to spill the Boston Tea Party crates everywhere.

But on that halfway point note. I had a doctors appointment a couple days ago where they mentioned out of the blue that I’ll likely be doing radiation at the end of all this. Robert specifically asked at one of my appointments if I would need radiation in addition to chemotherapy and they said no.

Not sure why they determined that. My cancer antigen levels went to perfect and there’s no other reason for me to need more than what was originally scoped.

Let’s Take A Moment To Make Fun Of Jen

#1 Lidocaine

My chemo brain is in full effect. I could not for the life of me remember the name of a simple thing… “Lidocaine”. 🤦🏻‍♀️. Robert kept laughing because all I could think to ask him for was my “Numb Sauce”. Soooo I guess that’s the official name for my chemo Lidocaine in this household now.

#2 Benadryl

When they first give me Benadryl in my IV just before the chemo cocktail, I always get so loopy. I talk and I don’t even know what the words mean. Robert just told me, “you were talking and talking and I had no idea what you were actually saying, I just listened”. 🤣

I remember yapping. And I remember the words my brain used were definitely not the ones that came out of my mouth. And then I’d just laugh at myself. And laugh. And laugh some more. At nothing. Until I had tears pouring down my face. Then of course, that makes Robert laugh and laugh. And before you know it, nurses are slowly backing away from Chemo Pod #26.

#3 The Door

When we went to the cafe before treatment, I pushed a pull door. I know what you’re thinking. “We all do that once in a while, it’s no big deal”. But do you do it again after it doesn’t open the first time? And you push REALLY hard the second time? Then you think the third time is just a freaking charm so you do it one more time? Then you realize – silly girl, this door is LOCKED. It’s the only explanation.

So you unlock it and push again. Then your boyfriend who is blankly staring at you (for what seems like an eternity of him enjoying this way too much…) says, “you know that’s a pull door?”

And you’re all like, “uh, yeah, I know” in that super attitudey, “No-I-absolutely-did-not-actually-know” kind of tone that is accompanied by an involuntary eye roll (y’all know EXACTLY the one I’m talking about). And you pull the door. And you pull it HARD. But nothing. Because when you “unlocked it” earlier, you actually locked it. Door: 5, Jen: 0. Those are slightly embarrassing stats. Moving on.

What’s To Come

I feel great right now, like I have immediately after each chemo session until 3 days have passed. Minus the bruise that door put on my ego.

The nurse told me she thinks my leg issues may not be neuropathy (which is great) and that it almost just sounds like dehydration. I swear that’s their answer for everything though. Headache? Drink some water. Knee hurts? Drink some water. Belly hurts because you drank too much water? Drink some water.

I’ll update again in a few days to fill you in on how this round treats me. Love you all 💕