Serious talk about surgery

The shots aren't working.
The steroid shots.
Not working. It's been 13 days in a "week- 10 day" prediction)
Pain persists.
Not happy.

It is looking more and more like I'm going to move ahead with the reconstruction surgery at NYU (New York University in Manhattan). It might be my only chance at getting out of pain. But if things go wrong..... I can't let myself go there. So many things can go wrong, and I know many of them. It's so scary I don't know how I'm actually going to go through with it, but I need a quality of life back, and this might be it.

Let me explain a little about what will happen at that surgery:
(this is for me as much as it is for you- I need to get it all "out", on "paper", to organize my thoughts and feelings about it all)

The surgeon is going to replace the mesh and clips that are there now for an organic piece of something (I have to ask what exactly) that will integrate better with the muscle I have in the stomach wall and the other tissue surrounding.

That is one huge part of the surgery.

The other huge part is that he is going to remove the skin graft and pull the healthy skin together from both sides of the graft/Gapey area- my upper thigh and lower left abdominal area. I have a suspicion that there will not be enough healthy skin to cover the whole area, and I will wake up with skin expanders in those areas instead of finished surgery. That is worrisome, and extends the time I'll need to stay in New York, but is at this point a viable option. But to have healthy skin (meaning with all the layers regular skin has before you hit body parts.... a graft is merely like a piece of wet paper towel over a big hole, and I feel everything, including all intestinal actions, I feel the clips and mesh, I feel hernias around the area, etc). This would *greatly* improve quality of life, it'd be like I never had NF if I got rid of the skin graft, and things were comfortable inside me. I can't even imagine the comfort this would afford me.

But it would be at the expense of a painful surgery and a lengthy recovery. The surgeon said he wouldn't let me fly for at least 30 days, then we'd reconvene and see if I can fly back home yet. It could be a while. Any my son Dov is going into the army in August, and I'd like to be there for his induction, but I might not be. And who will be with me in NY? I'd be in rehab for the first few weeks (I don't yet know where, it has to be planned). Robert will come with me for the first week or so, but he'd have to fly back after that. Our kids are older, but not that independent to be without parents for so long. We're thinking of flying out Shifra (my 16 year old daughter) to help me after Robert leaves. She's not going to camp this summer, she wants to work at catering places and make $$. But maybe we could fly her out for a few weeks, she can stay nearby her uncle in Brooklyn with friends of his, and she can come in to be with me during the days. She can also tour around NY with her wonderful uncle Michael (I'll write you more about this, Michael!), and have an experience. But nothing is set in stone yet. I don't want to be alone in rehab.

Then the question arises where will I go if I'm let out of rehab but not allowed to fly home yet? I need to be near my surgeon, in Manhattan, and I don't have a lot of connections there anymore... not that keep Kosher, anyway. I have wonderful friends in New Jersey, but can I commute in that condition? It's all hypothetical at this point. I need some solid answers from the surgeon, and I haven't had any communication with him. That is something I am going to work on this week. Too many loose ends, I can't make good decisions this way. I have questions to ask him. I am in communication with his assistant, but she can't answer the questions I have for him, I need a Skype session or something like that with him.

It's swimming around in my head. I need answers to picture things, and to plan. This is scary enough without unknown variables.

I'll keep you posted.

(attn: Claudia, Carol, Devorah, Michael, Ellen, you are all factoring in my tentative plan possibilities... Lois, you just take care of yourself!!!!! Love you all)