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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

How do you get a wig untangled from a robot vacuum? Asking for a friend.

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.

Not much to update on. We are in the process of moving, so it’s been busy.

I’m still in a lot of pain where they installed the chemo port in my chest. It comes and goes, and when it’s hurting, it makes my entire upper right side immobile. If I so much as move a thumb, I feel it in my chest. And it’s excruciating. And all the doctors say is basically…”yeah, oops we surgically implanted it right on a nerve. Sucks to suck”

My surgery recovery is still ongoing as well. I have to go from sitting to standing at a snails pace or I’ll get a shooting pain through my lower abdomen. The doctor said this is normal and to expect it for 4-6 months. 😒

On to the good stuff!

With every less than ideal situation, there are some silver linings. And I try to look at the positives, so I’m going to share.

1. My bald head dries so fast after my shower

2. I can take my hair off to do my makeup

3. I scored some expensively free hospital socks

4. If I’m sweating, BOOM, I just take my hair off

5. I get to point at things while Robert moves them

6. I can say really stupid things and then just say, “sorry, chemo brain” after and I’m good to go.

7. If I like someone’s hairstyle, I can just go buy it on Amazon.

8. The dogs recognize something is off and I get extra sweet snuggles.

9. The hair loss included leg hair.

10. This blog, and being able to share everything with you guys!

🙌🏻

This infusion round, one of my best friends in the world, Angela, flew to Florida to sit with me during it. She certainly made it way more bearable!

The part where they put the needle in my chest was way harsher this time, which was weird because I actually did the Lidocaine correctly beforehand this time (I swear).

It’s officially five days post-chemo, and this round brought me more sleepiness and more achy and wobbly legs from the peripheral neuropathy. And just all around body aches. But I think I’ve been dealing with it okay.

This round, after talking to my oncologist, I was able to be a little more proactive in trying to prevent the neuropathy. He instructed me to take vitamins B12 and B6, and to wrap my hands and feet in ice packs during the chemo infusion. I did both of those things, which I can’t say they really helped thus far, but if it helps prevent permanent damage, I’ll do whatever.

My hair is about gone. I buzzed it down short and it’s now pretty patchy. My wig doesn’t fit right and has to be sent back, so for three or so weeks I need to figure something else out.

I turn 40 in a couple weeks… and it’s definitely not going to be the 40th I might have pictured. I have my third chemo infusion on 8/4 and my birthday is 8/7. Which means with the symptom delay, my aches, pains and nausea will kick in just in time to ring in 40 😅

Robert turns 40 this weekend. I had booked him an awesome fishing charter on the intracoastal with just us and the captain… but I booked it way before any of this and had to cancel. And now I just feel horrible that I can’t do more for him. I had a nice cake being made for Sunday, but the baker had a family emergency and cancelled it on me today. And it’s a bit short notice for anything else. Things aren’t seeming to go right. So Robert, if you’re reading this, we will do something great for your 40th and mine when all this is over, I promise!!!!!

And I swore I would never show anyone by bald head. But yet here we are.

Chemo is weird.

Since my last update, I’ve gotten red bumpy things all over my face that they call “chemo acne”… but is not acne and can actually be made worse by acne medications.

I’ve officially started losing a ton of hair. Even just going to put my hair behind my ears, it all comes out in my fingers. So now I’m weighing the options of which is more traumatic…. Continuing to watch it fall out in chunks or cutting it all off and actually facing the fact I have cancer. Hmm.

I know if I go to a salon, I’ll just cry in front of a bunch of people. Robert suggested he call around and ask if someone could do it after closing so I don’t have to be around strangers. I don’t think they do that though. So here I sit, continuing to wimp out on that.

I’ll update again when I stop avoiding the inevitable.