consult this morning

Came back from the consult with Dr. Udi Rat feeling depressed, spilling tears every so often. I don't feel ready to talk about it, but I'll try to jot down the main things here.

1. Of course the expected shock reaction upon seeing Gapey.
2. He is very, very concerned about doing any surgery at all on me because of my systemic strep and compromised immune system. "Extremely High Risk"
3. He suggested radiation therapy injections into the hip to reduce the tumor. But that is also problematic because of my compromised lymph system in the groin. Radiation destroys more lymph nodes, and I already have a lymph edema and drainage problems there.
4. He had never heard of the cancer drug that my BIL sent us info about, but is willing to look into it.
5. Next step is to go back to Ichilov and consult with Prof. Giladi and Prof. Bikels to make final decisions on treatment.
6. If Bikels and Giladi (and me, of course) come to the conclusion that we'll do radiation treatments, and/or arthroscopy, the chance of recurrence rate is high. Very high. I cannot have an open synovectomy, as is the best treatment for this disease. And the lymphatic problems after radiation...

Why depressed? Looks like this PVNS pain may be chasing me forever. Maybe we'll try the Imatinib (cancer drug which has an anecdotal study of a few PVNS patients), it's still an option. I could even go to the guy who did the tiny study- he's in France. Robert already wrote to him by email, and he wrote back saying he'd absolutely recommend Imanitib in my case. I've never been to France....

So many consults
the emotional roller coaster that never slows down
no answers, a very complex situation
constant pain

constant pain.

My life changed forever.

Why?

Can I just ask that sometimes? I do have faith, and faith is a place that we aren't supposed to ask why. But today, ...well...

WHY!!!!!