Monday, August 03, 2020

What a Week

A lot happened last week. In a nutshell, I’m out of my clinical trial, and I spent 4 days in the hospital dealing with malignant fluid around my heart. 

I had been doing my monthly clinical trial visits virtually since March, but as things have been getting more worrisome (increasing shortness of breath) my Wizard wanted to do a full evaluation in person. So, I went from extremely careful pandemic behavior to getting on an airplane. I’m very glad I went. I had a full battery of testing, and discovered that I had fluid around my heart (pericardial effusion). My doctor was going to admit me on the spot, but understood that I wanted to come back home first, and felt it was safe to delay to later that day. My beloved family picked me up at the airport and dropped me off at the emergency room. At least I got to spend a few minutes with them. 

Thankfully, the heart issue was not what they considered “emergent” (no need to rush right into a procedure), and they were able to wait until the next day, make a plan, and get me scheduled. And I got a private hospital room, so that was nice. 

They placed a small drain into the pericardial sac and drained out the fluid. I had to stay in the hospital for three days to observe the draining, but it was largely uneventful (thankfully). The next steps are a follow up echocardiogram and then getting scheduled to start chemo. 

It’s funny looking back on how I have changed since I did chemo in 2013. Then, I was much more Season 1 Buffy (“give me something pointy and tell me where the big bad is”) and this time around I’m finding a lot of resonance with Season 6 Buffy (“Life isn’t bliss, life is just this, it’s living”). 

I’m going through the very painful repotrectinib withdrawal, which is certainly impacting my mood. The aches are remarkably similar to the entrectinib withdrawal I went through in 2018, so at least I know what these awful muscle pains are about. 

I’m holding out a lot of hope for my chemo redux. It worked amazingly 7 years ago, and all of my treatments since then have been laser-focused on the ROS1 mutation, so it makes sense to go more broad-spectrum.  

If you have some well-wishes to spare, I will happily accept. This is kind of a lot to absorb, plus pandemic and all. 

I love this song, and I feel like it could be the theme song for 2020. 

“Anger wants a voice, voices wanna sing 
Singers harmonize till they can't hear anything 
I thought that I was free from all that questionin' 
But every time a problem ends, another one begins 
And the stone walls of Harmony Hall bear witness
Anybody with a worried mind could never forgive the sight 
Of wicked snakes inside a place you thought was dignified
I don't wanna live like this, but I don't wanna die.” 
- Vampire Weekend’s “Harmony Hall”


Bryan said...


I, too am a stage-4 "live-er". Diagnosed in 2011, just a little before you with a little girl as well. I found your blog early on and have been reading everyone. I have far outlived my diagnosis and been through some rough times/treatments. All that to say, I can relate to many of your experiences with your up/down treatments and lifestyle. You have encouraged me a lot from a far. I know I have folks who read my blog that I do not know, and it's always cool to get a surprise note from them. So, this is your surprise note, from someone you don't know. I do pray for you and have thought a lot over the years about your plight with a family....and this is what I wrestle with as well. My heart sinks a little every time I see "A Lil Lytnin' Strikes" in my in box, but know that I'm routing for you and I am praying for you and your journey. Thanks for sharing your tough road! Bryan in Colorado Springs

SharLar said...

Lots and lots of good vibes coming your way! I, like Bryan, think you are an inspiring young women. Keep on keepin on and keep us posted!

magzilla said...

Tori, you've been such a motivation and inspiration to me since I was diagnosed two years ago. I think of you with love often and am sending you all my good thoughts. Here's to this round of chemo knocking the cancer back another 7 years. I share only because I haven't seen you mention it but I've had amazing results fasting before/ during treatment. Stage IV spread to 4 tumors in the brain (and everywhere else). Now cancer free for 10 months and counting.

Sending you all my love!

Kerensa said...

Hi Tori,

I honestly don’t know what to say except that you are a truly amazing woman. The power of these blogs to share inspiration and insight is astounding. Beaming all our power of positive thoughts, wishes and prayers for you.

Huge hugs kerensa xoxoxo

Corinne said...

Sending thoughts of strength and great hope, Tori. I am keeping you in my thoughts.