Update from an un-centered blogger

Man, I just don't know how long I can keep going like this. These ups & downs are way too intense. And I am dying to be stable and have available time and energy (and no pain) to do fun things with my kids. It has not been easy.

So, I got the call from Rav Firer at almost 3 pm. I (we) was (were) waiting from 1:30. But, really, since 11:00 with the phone calling thing, the tension was way high.

Turns out that he didn't read my fax before the call. That was disappointing. When we got it straight what we are talking about, he suggested arthroscopic surgery with Dr. Yaniv or Dr. Raht. OK, I told him the current plan is to do it with the two of them together, and he asked why would I need two surgeons? OK, I explained the problem with the whole area after the NF. I really wish he had read my fax. So anyway, after I told him the deal with the two surgeons, Robert spoke up (it was on speaker phone) and asked him if he knew any other arthroscopic hip specialists [in the world] that he'd recommend. He suggested a doctor in London named Richard Villar. Here is his site.

And the important questions we had about Gleevec were left, as of yet, unanswered because the Rav said he's going to consult with his people about it. He had never heard of Gleevec used for PVNS. He did tell us to call back next week for an update on that part of our inquiry. So, we will do that. I guess it's again the 11:00- 11:30 thing and wait for the call back. It is just so tense doing these things. SO Tense.

After we hung up with the Rav, he sent us a fax about the contact info for the doctor he recommended. We called the doctor, in London, right then. Why wait?

Turns out that Dr. Villar is on "holiday", and will not be able to take new cases until October. Even if I sent my MRI for a consultation, he wouldn't be able to get back to me about it until mid October.

Wasn't it June that I was upset to have to wait till September for Dr. Raht to do the surgery? Then I decided to go for Dr. Yaniv in July.... then a later date, early August... then not.... now I am waiting for a date in early September for Dr. Raht again, this time together with Dr. Yaniv.

Now if I want a consult with the doctor Rav Firer recommended it'll be way after that before I get any concrete answers. I may have to go to England before I'd get a proper consult; pictures & an MRI may not be enough, knowing my case.

Rav Firer did say that the team of the two surgeons here is excellent, the best in Israel for sure. Oh, and he was dismissive about which oncologist to be with (Bikels/ Meller). Didn't seem important to him. In the end, it's the surgeon who is important here. BUT, about the Gleevec, a good oncologist is the key. But that is To Be Announced, because we haven't had any input from him about the Gleevec.

I don't feel this was so helpful in the end. We did get a name of one of the world's most prominent hip specialists, and that is good. But, do I wait more for answers from Dr. Villar (England), or do I go with my team here? The Rav didn't answer that to my satisfaction. I have to answer that. And the pressure is so much for me. And the waiting. And the growing tumor.

Scatter- brained thoughts that I can't connect:
And we picked up my new [automatic transmission] car today (1998 Renault "Clio", green). (this is a very happy thing for me- I picked out this car- it's very exciting.)
And the kids had a really hard day waiting for adult things to happen.
And I want to do more kid things with them. Summer is almost over!
And Azriel's surgery is tomorrow at 5:30 pm. I am so worried, and so tense about that. Again, I'd really rather do kid things with them! Too much health issues. I just want to live our lives.
And buy Ya'akov sneakers.
And take the kids on another outing before the school year starts up.
And order all the school books already.
And I did a huge, overdue load of laundry.
And I wasn't able to connect with the pain clinic doctor today.
And I made the challot and pizza because tomorrow is surgery day.
And it is getting harder and harder for me to wind down- life is so damn complicated! I am longing for simplicity. I can't take it anymore. The tremendous ups and downs, the tension about the health issues, the constant pain, the not *normal* existence. I am not doing great today at accepting our definition of normal.

Just took a sleeping pill, although I am so incredibly exhausted, I can't wind down, even after a nice warm shower.
I'd love an hour long massage right about now.
Just don't touch my left thigh *at all*. Even my skin there hurts.

Please daven for Azriel Yosef Ben Sarah Rachel tomorrow and Friday.
Thank you all for being here with me. I don't know what I'd do without you all.