Bridging Therapy ~ The four TACE (transarterial chemoembolization) treatments done last summer have accomplished their goal. December and February CT scans show that my tumors, Audrey II and Carmine, are stable and not growing.
Something new on the Horizon ~ The long term effects of Hepatitis C and hemachromatosis are the likely cause of the hepatocellular carcinomas. I have an appointment in late May with the Viral Hepatitis Clinic at UCSF to get information on a 1-2 month regimen of the new drug combo of Ribivarin and Sofosbuvir. It's been effective in making the Hep-C viral load undetectable in the blood. The longer it is suppressed the less likely it is to return after transplant. Treatments will start this summer.
The Waiting Game ~ The transplant list is a numbers game, played by the book, and driven by something called a MELD score: an acronym for Model for End-stage Liver Disease (most transplant patients would really like to see a name change). A combination of three blood tests are done quarterly and then points are added to your existing MELD score.
Patiently Waiting
The Irony of It All ~ Iron overload girl is now anemic with a ferritin level of 14. No one has been able to figure out why. My gastroenterologist had suggested taking ferrous gluconate, but the ingredients read like car wax and cleaning products so I declined that dance partner. My UCSF doc suggested only a low dose supplement so I'm taking all natural Floradix. The drug regimen mentioned above to deal with the Hep C will also lower ferritin levels so it's important for me to stay on top of this.
Warrior Angel and Eagle Mount
Challenges ~ We all face challenges of one kind or another. The key is to embrace them with grace, humor and a warrior attitude. Choose to be fearless, be your own advocate, and question authority. Don't waste any hour of a day and keep your creative side engaged at all times.
"Challenges make you discover
things about yourself
that you never really knew".
Cecily Tyson
No comments:
Post a Comment