Big Pain, No Gain

This is an unauthorized blog post, but an overdue one nevertheless. It's been a painful couple of weeks for Becca. She started taking the Votrient pills (mentioned in her last post) this week, but it will be a good six to eight weeks to see whether they are doing the trick. Meanwhile the meter is running as the #$%&!@% insurance company denled coverage. We're appealing. Another painful process.

The physical pain is sciatica, an intense deferred pain centered in her right upper thigh area, not near the abdominal tumors. Two theories are a blood clot or bone metasasis. Tomorrow Becca gets an X-ray and a sonogram to see if anything shows up. Then there's the pain medication, which has been ramped up from Vicodin to Dialudid to, as of today, Dialudid and Methadone. Serious stuff, and she is not even trying to kick heroin. That's on top of the Adavan for anxiety, nausea and muscles, and God knows what else.

My mom used to take Adavan during her sunset daze. She also described painful people as "pills" during her glory days. I used to think that was a funny, jaded expression. Now I'm not so sure.

Steve

unexpected news

Last Thursday I got disappointing news that the chemo therapy protocol that I am on is not working. The tumors are growing in both my pelvis and back. This is contrary to the encouraging news from few weeks ago that the tumor on my back was shrinking. After a few days of shock and despair, I contacted Dr. Sabbatini, the sarcoma specialist in MSKCC in NYC and he heavily suggested a drug call Votrient. Votrient is a newly approved FDA drug that is used for renal cancer and is in phase III studies for sarcoma. It's not a chemotherapy but a tyosine kinase inhibitor which blocks proteins, I don't understand it fully but I know the drug works very differently than chemotherapy. I may have some hoops to jump through to get Votrient but I am pretty certain I can get it and I am doing everything I can to expedite the process.

I am still working on keeping my weight up which has become harder because my appetite isn't as hardy as it was. I frequently have abdominal pain which is a real downer for eating and to make things more complicated, I am super finicky about what I want to eat; one minute its roast beef the next cinnamon bread.

I hope next time I post I will have better news.

Becca