Apologies for the longish video post this time. That’s what I get when I don’t send consistent updates. It’s been over 3 weeks since I last posted so I guess I had a lot to say.
Below are the key points in case you can’t watch:
My hair is growing back! 💁🏽♀️ My biceps sadly are not. 🤦🏽♀️
I worked out today…and it was really hard, but I did it.
I’ve had a total of 3 chemo treatments (Folfirinox) that still tend to hit me pretty hard. Main symptoms are lots of nausea, low energy and extreme fatigue. Neuropathy is also creeping back in so we’re keeping a close eye on this.
I had a visit to a Pulmonologist about my cough. Currently trying a nerve blocker in hopes that that helps but it’s been a week and a half so far and no real change. The mystery continues!
I saw a Naturopathic Doctor who also thought that a nerve blocker would help for my cough. More importantly, which I think I forgot to mention in the video, she put me back on Mistletoe Treatment, a complimentary therapy that is not FDA approved in the US, but is a standard of treatment for most cancer patients in European countries. It can help offset the side effects of chemo and improve quality of life.
Some good things that happened:
Friends from Brooklyn visited!
Chris and I saw Explosions in the Sky in Columbus!
We heard 5 great stories when The Moth came to Dayton!
We got to babysit our grandson, who was supposed to be napping, but instead stayed up and gave us so much affection while we played!
On the downside of the cancer rollercoaster:
My CEA’s have spiked to 975 from 288 just over a month ago. (Normal range is 0-4 btw). This is an indication that the treatment isn’t really working.
I have CT Scans scheduled for Monday 4/28 of my neck, chest, abdomen and pelvis. This will literally give us a better picture of what’s going on inside.
The scans should also be able to confirm fluid that we believe is building up inside me and is causing my distended belly and swollen feet. Once this is confirmed, ideally they can then go in and drain some out to give me more comfort.
Next chemo is set for Tuesday 4/29 but this could change depending on scans. If I do proceed, I might start a new chemo called Lonsurf. BUT, I’m still doing research AND looking for clinical trials. Open to hearing from anyone who might have a lead on something and/or who has experienced Lonsurf!
And sadly, I have two friends that just entered Hospice care and we said goodbye to Janet who passed away on Sunday. Janet taught me to take control of the things you can and to live your life as fully as you can up until the end. I’ll always think of her and her beautiful smile when I choose joy and quality of life over some other treatment. Love you Janet.
Thanks as always for being here. This shit is really really hard sometimes and I’m so glad that I don’t have to go through it alone.
With love and gratitude,
Jess
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