Back to it: Water Main Breaks, Power Outage & All

Earlier this week, I was still so tired,  but it felt like my brain was waking up a little more. I began noticing more and more (not my own!) typos in anything I was reading online. My first thought — “does this mean my blood counts are back up?”

Luckily, I found out late Tuesday that was the case! My white blood cell counts bumped back up after two weeks on-pause from treatment, and were over 100 again, so we could start a new chemo regimen yesterday.

For now, the plan is to switch from a lower dose every week for 12 weeks (only got 2 weeks in on that plan) to a higher dose every two week, with a neulasta shot to give my bone marrow a nudge between sessions. I gave these shots to myself during AC treatment in Dec/Jan anyhow, so I’m used to doing this. There are different potential side-effects, but so far, it’s not terrible.

So, I think yesterday’s chemo session was 7/10 instead of 7/16, but I’ll know more certainly about that next week. I’ve been told not to think of the end-date as set in stone at this point. This entire thing is a constant lesson in not getting ahead of myself.

Yesterday was a record-setting day — from showing up to heading home, it ended up being an eight hour day. WHEW! No wonder both J and I are worn out today!

It was intense and hectic for everyone from the patients to the support staff to the docs yesterday — a water main broke on the top floor of the Cancer Center, and water leaked down, down, down… shorting out almost every single outlet on the floors below except for the “emergency” outlets.

This meant no computers except laptops charged off the emergency power strips, so all of the steps that usually involved scanners and check-in, etc. were on printouts. Even my medical ID bracelet was sharpie-on-plastic DIY-style.

Jeremy’s exact words were “this is like a hospital in a movie!”

You know when you watch a TV show and a hospital is all crazy with bonkers-overflowing waiting rooms and a man is walking around in circles for an hour with the most EXTREME hiccups you’ve ever heard (sorry, mister, everyone totally understands that might just be a part of what you’re dealin’ with), and there’s an older gentleman who REALLY wants to play a game on his phone but doesn’t understand how to turn the sound off, and then the nurses are running all around calling folks’ names over and over because there are just SO many people? Bingo.

Once we got back into the chemo area itself, it was relatively chill, but even one of the nurses there admitted he was kinda waiting for things to turn into a zombie movie or something. If I was a rich woman, I would’ve bought an after-work round at Casey’s for every single person on duty at the CC yesterday.

But the bottom line? Dang do I have admiration from every single staff person who showed so much professionalism. It was pretty amazing, the level of not only grace, but graciousness-under-fire that I saw each step of the way.

On Pause…

On Pause…

The last two weeks I’ve gotten sent home from chemo 

…due to low white blood cell counts. The first week, I tried not to let it phase me — it’s a pretty common thing to have happen. But then yesterday, we got my bloodwork results, and despite no chemo the week before…my counts were even LOWER.

So… that part isn’t as common. But it isn’t totally unheard of. It just means my body metabolizes Taxol very differently (over a longer period) than other people. My doctor has seen it before.

Can I say here that I am really thankful I have a super-smart doc who also has enough background and clinical experience to have seen/navigated something like this before? My Dr. is funny and humble and whip-smart and just very real and human. It’s not often you find all those things together in one doc.

We’ll do some more bloodwork next week and then hopefully restart a different chemo plan.

It’s a little weird to think you have this idea of what the next few months will hold, and then be in limbo to go into something different. But really, aren’t shifts like that just kinda, well… life?  A good reminder to not get/think too far ahead of myself, for sure.

 

reallife
From Natalie Sun’s Texting with Cancer

 

The good news

…is that although my immune function is still pretty low, and I’m still anemic, I’m not on as harsh of lockdown as I had initially put myself on. Still, given that 2/3 times I’ve had “moderately” low WBC counts I have picked up a cold during 1/2 days at work (despite obsessive hand-washing), I will probably still limit my exposure to spaces where the general public is hangin’ — which is kinda a bummer ’cause I find a weird comfort in grocery shopping. And as someone who geeks out about sound and images and media, I know tonight’s Nerd Nite with Ross and Martin is going to be a really fun one (special thanks to Sara and Elyse for holding down the fort on the NN-organizing front).

And I really miss shows. I’ll definitely appreciate being able to go to the next one I’m able to. For now, I’m just taking the time to revisit my records (thankful for that comfort), and though conceptually, reacting to each is an appealing idea, I’m just gonna keep my own rediscovery low-key.

The even better news

is that although it sucks to feel so wiped out, the theory goes that if the chemo is being THIS hard on my own cells, it’s also thoroughly kicking the ass of any sneaky cancer cells still hanging out and hiding anywhere. And that is GREAT, since chemo is really the best tool we have right now.

Sparky Coupon Report

The last week-and-a-bit has felt kinda tough. On top of all of the limbo and house-arrest and unknowns, my best-pup buddy and constant companion Sparky Coupon got a little too wild jumping around and hurt his tiny back.

The big relief is that he’s going to be OK, but he has to spend a lot of time forced to rest in his crate, and the medicine he’s on makes him sleepy. It’s hard to really let him know that even though it sucks right now, he will feel SO much better soon.

So, really, as I type this, I’m thinking — Sparky’s situation is kinda like mine, huh?


 

GIANT thanks to everyone who has sent along a recent note, something to read, or a little pick-me-up present. Again, I continue to be absolutely both humbled and held up by all the expressions of folks’ caring. It’s so amazing that I asked Jeremy yesterday if he was sure he didn’t bribe everyone to be so sweet to me! ❤

Related/Coming Soon:

pic of something amazingly rad from some of my girl-gang…

 

 

 

little bits of text/big feelings

little bits of text/big feelings

Looking through notes on treatment is little overwhelming, but it’s this statement that’s really hardest for me to even think about accepting…

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…though this email subject line a few weeks ago (thanks, Sara!) was definitely the thing that made me feel most-myself in a few months…

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New Tacocat single is pretty perfect for just where I’m at at the moment…

 

<3 hearts <3

Hey! It’s Valentine’s Day!

Whether its romantic or not (and let’s face it, romance can add a lot of messy baggage, though it can be great too) let’s hear it for love.

Just plain ol’ kindness to totally transformative love — all kinds are super important! Hooray for love!

I’m on house arrest at the moment — they sent me home from chemo last Wednesday. So, until my white blood cell count bounces back up, I have to be super careful being around people and chemo is on pause.

My fella Jeremy and his DJ partner Gibs and crew are throwing a big ol’ party down the street. They’ve been throwing almost-monthly parties for 14 (!) years… though this is the year the frequency will be less than monthly… but tonight is a party night and…I wish I were dancing like THIS…

405037_4388088653208_1984126258_n(melissa, dena, angela and me at the halfass <3)

…or THIS (a few years later at the Blind Pig)…

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…or maybe even just kickin’ it in the bathroom like THIS (back at the Halfass)…

halfassbathroom

…tonight, but I’m happy/grateful enough to be chilling with my sweet dog in our very cozy house.

There is SO much I want to make and do and say and to be, but for now, gotta keep it low-key and get my strength back up!