What to ask for?

Wow, yesterday started out great with the hydrotherapy, and a great feeling thereafter, but what a doozy of an evening.

Robert called Prof. Bikels. I have such a hard time making these calls myself, especially if the calls are not invited. So, my beloved secretary did it for me. Well, Bikels was not happy to hear from him. He spoke to him in a very arrogant tone, and told him that he has very important cases of people who will die without his immediate help, and my PVNS is not on the top of his list. Can you imagine a doctor saying that to a patient (or the husband of the patient, in this case)? Then when Robert told him that my pain is getting worse, the disease is progressing, he actually said to Robert "that is impossible. The disease does not progress that fast". Robert told him my pain is increasing, and Bikels said impossible. I'd like him to walk with my hip and then tell me that to my face.

Then Robert then opened the issue of the possibility of trying the drug "Imatinib". Bikels quickly said that Robet is being rediculous for wanting to try that drug with me. If he wants to go with Imatinib, Bikels will have no part of it. That we'd have to find another doctor. That was the end of that.

It is near impossible for us to get the Imatinib. Also, we, ourselves aren't sure if it is the right way to go. It would be nice to have a doctor to consult with, you know? I mean, all-n-all, there are no scientific studies on use of this drug with PVNS. The guy in France published only one case, and emailed us telling of 3 others in his care (with no data accompanying this claim). But ya know, it's all anecdotal. That is not to say that it is not worth a chance, but is saying that it is nearly impossible to discuss with a doctor and decide weather or not to prescribe it for me. This disease is just so rare that the spectrum of treatment is quite narrow. Robert has been doing some research to see if there is any other way to get it, and it isn't clear. Yesterday he got in touch (by phone) with the drug company that makes it, and got a run-around with no answers.

So, now we have a situation like this:

I will most probably have arthroscopic surgery, and it will likely be with Udi Raht here in Soroka. That is the decision of Bikels, to have Raht do it; he is *the* expert on arthroscopy of this sort. I don't want to be in Soroka, and for two years I said I'd never let another knife go near me in Soroka if I am conscious. Well, looks like I was wrong.

After that, no treatment is clear. Follow-up with radiation is well known, but not appropriate in my case. Imatinib is not a possibility, unless something changes.

So, without a follow-up treatment, the 45% recurrence rate seems like a reality for me. There are PVNS patients who have had 6 and 7 arthroscopic surgeries, then finally needed hardware put in the joint, or artificial joints implanted. Grim picture.

And as of yet, we are in the holding pattern waiting for Bikels decide to put me on his radar.

I thought of taking a friends' suggestion a few weeks ago and get in touch with Rav Firer again for another consult about where to go from here. It's just that I am not sure what to ask for. You gotta be careful what you ask for. I thought about asking for his advice about how to get the Imatinib, but it's not so cut-n-dry. Is that *really* what I need to be asking for? Should I ask for a new doctor recommendation? Is *that* what I should be asking for? It's just not clear. My connection to fax the Rav directly is ready and willing to send it... I just have to know what to ask for, and how.

Same thing with being an active partner with The Creator. I am no longer passively accepting what is sent my way, I need to have an active part; I gotta know what to ask for.

(In other news... my session with the personal trainer this morning was great, although I was sore in my shoulders from the swimming yesterday. Keren (the personal trainer) is so special and gentle with me. And already after only 3 sessions with her, I do feel improvement. And I am very in touch with my body, learning how to treat it gently. It is one of those gifts from the Big Hand in the heavens. And my "homework" from my Rebbetzin (Michal P, for those of you who are in it with me) the other night is so great for me also. I am really feeling like I am getting onto the right spiritual path. It feels like a breakthrough. Baruch Hashem)