Checking in for 2024-02-06:
Had my visit with Dr. Jaiyesimi today. Got the upped dosage of the Regorafenib (nee: Stivarga, Regonix) ordered which should be here by the time that I need to start taking it on Thursday. I spent most of the day getting ready to order this. In the end I realized that was wasted worrying and reloading of the site. While I was playing drums I got a phone call from Alliance Rx to schedule my order. I'll need to remember that in the future so I don't spend unnecessary time worrying about nothing.
I also handed off what I'm calling the Drumstick Memo. You can find that on my cancer page. This was several pieces of paper and a baggie with drumstick keychains that I handed off to an extremely confused nurse. I hope they got the message. If you want to play along at home you can get the keychain here, though I'd highly recommend combining it with some drumsticks.
My bloodwork was OK, though there's some worrying numbers related to my liver. They're the Alanine Transaminase (ALT) and Alkaline phosphatase (Alk Phos). The ALT number was 150, which is considered "Critical High", with "normal" being between 16-63 U/L. The Alk Phos is at 530, with "normal" at 46-116 U/L. So my liver is definitely not a happy camper. Both numbers are increasing dramatically. My hope is that the Stivarga will help my liver to heal up. I'm not at the recommended dose quite yet. I'm also not showing symptoms of liver failure quite yet so I'm keeping my optimism.
And this seems to be the refrain this year: keeping the optimism. I'm feeling like I'm losing what little control I had on this disease. The blood transfusion felt like a descent into ill health. Fortunately I seem to have rebounded, though my red blood cell count is still low (3.3). I just need to trust in Dr. Jaiyesimi, my care team, and my own fortitude. I'm not about to succumb to this disease if I can help it. But I'm also ready to accept what is in store for me and be mindful about the whole process.
Unfortunately I didn't really eat a lot of food for dinner. That's slightly worrisome. I took some anti-nausea medicine to keep me from feeling queasy, but I didn't eat much. Hoping that tomorrow I can find my appetite again.
I did some writing on my book today but felt a little scatterbrained today. The section I'm writing about is a little confusing anyway so I need focus. Unfortunately focus wasn't forthcoming with all of this stuff on my mind. Here's hoping I can find the focus tomorrow.
It's difficult to feel like you're losing control of something that you didn't have any control over to begin with. I kept betting on my liver being able to regenerate from the damage that the cancer is causing it. Unfortunately that has its own cost to the regenerative abilities of the liver. Poor little thing needs some help.
More as I know it.