How could it all get to this?? HOW!?

This is just not a good scene. I am so upset, I can't even think straight.

Robert talked to Dr. Yanniv this morning. He is the surgeon who was supposed to do my surgery on Wednesday and couldn't because Dr. Bikels didn't prepare him. Robert wanted to know what are the issues here- how dangerous is this, what are the concerns, etc.

We learned that arthroscopic surgery will not excise the whole PVNS tumor. They will inevitably leave some in, and it will grow back in very little time. This is fact, not a guess on his part. Because of my NF problems, it is impossible to get out all of the tumor without endangering life or limb. That is what he said. The tumor lies a mere few millimeters from the femoral artery, which is quite unprotected after all the fascia and surrounding muscle were removed from the NF. Dr. Yanniv said that it is a risky surgery, but that it must be done if we are going to try to save my hip joint at all. He does, however, feel confident in doing the surgery together with Dr. Raht, to have two sets of eyes and two opinions in the room together.

So, this leads us to the Imatinib discussion. That is the name of the drug that has shown success in [now] 7 patients using it for PVNS tumors. These successes are not scientifically documented, but we'll try it anyway.

The problem: we have yet to find a doctor to prescribe it to me for PVNS. When I switch to Prof. Mellers (I'll call again on Sunday), Robert & I plan to go to him (in Ichilov, of course) and discuss this option, and if he'd be willing to support me in this. I need an oncologist willing to take a chance on this with me.

But, by the time all the approval forms and who-knows-what bureaucracy gets filed and signed by the god of kupat cholim (nat'l health fund), it could be many months before I even get to start treatment. On the same note, we could start treatment with this oncologist in Texas who agreed to take my case by telephone already. Robert & I took out extra health insurance many years ago which would cover overseas treatment, including a (more than one?) plane ticket. We will contact them, but it is also going to be a looonnngg process. They don't give money freely (who does?), and also have to confer with their highest-ups to get approvals from every which where direction on earth.

In the meantime:

I am IN PAIN.
This disease continues to do it's damage.
Percocet is less and less effective.

I am just crying and getting broken by this.

I am in a crappy situation, my life forever changed. Pain could possibly be a forever partner. Will I ever have a usable hip? Will I ever have to lose my leg?

Holy crap, NF ruined my life.

We are following up with the lawsuit, but that, too, is such a slow process. All this goes into it, of course. Every few months that go by it seems like there are more and more layers to add to this case.

But the money isn't the replacement for this anguish. (It would certainly help, though.)

What would really help is being out of pain and danger. No lawsuit can give me that, though.