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)

Bronchitis, Options, and shoe shopping

When I lived in Boston, I used to get bronchitis every winter, and the cough would last for months thereafter. Sometimes I took antibiotics, but it didn't seem to help. It was probably viral.

When I moved here, the frequency lessened (much easier climate!), but I still was prone to bronchitis every now & then. Especially when I was pregnant, I used to get it with each pregnancy.

Now I have it again. And no, I'm not pregnant. Just sick. And sick of being sick.
This particular round of bronchitis has been particularly bad, kind of similar to the one I had two years ago... (here) when I had internal bleeding from the coughing. I have had fevers up & down, too, over the last few days. Really, really unpleasant.

At one point on Shabbat I couldn't rest because of all the coughing, and I was in horrible pain, so I decided to take a cough medicine that Robert bought in the US, an over-the-counter thing. I haven't been taking much at all in the way of Western medicines, I'm nearly off everything (!). My body went into a bit of a shock... I actually hallucinated with this simple over-the-counter cough medicine (Mucinex). Real hallucinations-- like clowns in the back of a big truck, and also being in a library next to a card catalogue wall (remember those?), and actually one amazing thing was that my mother (may her memory be blessed) came to me. Not the sick, bedridden mom that I had in her past 4 years, but when she was maybe about 45... healthy, young, pretty. She came to me (I think I had called out for her literally), and started stroking my curly hair away from my face saying "yes my doll, I'm here, everything is OK". Then I lost it- started really crying. ("mommy!") And I was home alone, Robert & the kids were out at friends for the Shabbat meal. But, even though it played tricks with my mind, it stopped my cough for a while and gave me some desperately needed rest.

I have actually been taking that medicine at night, because it helps me sleep. The hallucinations have stopped. I can't use my medicinal Cannabis when I have such a bad cough, so this cough medicine helps me sleep.

At first I was getting the pain from the "anchor" clip of the mesh in Gapey, and thought that internal bleeding was happening again, but today it seems better, not so purple. I can see the blood pooling behind my skin graft because those clips get so irritated with the cough.

Which brings me to the discussion about the mesh and clips... I'd like to get them out. Well, I shouldn't say "like". But, I think they might be responsible for my abdominal pain and inflammation. I don't know that for sure, but I have reason to believe, that's obvious.

But it's not that simple. They are holding me together. That big piece of mesh is representing half my stomach wall muscle. If it was taken out, there would be nothing there. I have NF to thank for that. (I remember the surgeon from the NF telling me that the bacteria got a "tiny bit" of muscle).
My options for reconstruction are not good ones, either. Option one is with a muscle graft from my own body- either from my back, or a part of my calf muscle. That would leave me with another big wound to heal, along with a major abdominal reconstruction. Not savory. Option 2 is using a cadaver muscle. I don't have enough information about this, but it seems I'd have to be on immunosuppresants for quite some time after surgery, so my body doesn't reject it, and that isn't ideal obviously, either. The idea of a survivor of NF (and a zillion infections since then) going on immunosuppresants is, well, at best, counter-intuitive.

But what *really* are my options? To stay in pain from now until I die? That's such an awful option, I can't list it as an option. To return to treatments with Dr. F when I see that after so much hard work (on both our parts) the pain returned as if nothing had changed as soon as I had to stop treatments? He's returning at the end of the week. I don't know if I will resume treatments or not. It's extremely expensive, and I was hoping for more improvement by this time. I don't know if I should return to him or not. The treatments helped while I was doing them, but there doesn't seem to be much, if any lasting effect. He is quite sure that I haven't had enough treatments to really know for sure. His original estimation of one month of treatments for every year I've been sick, well, that's only been less-than-half fulfilled at this point, so he is telling me I am not giving it a fair go if I leave now.

Other options..... More abdominal surgery? Or stay in pain? Neither, thank you. I just don't know if there are any other viable options. So far no surgeons here will touch me, and the words of my last surgical consult with the top guy in Hadassa Ein Karem hospital in Jerusalem are ringing through my head "not only am I not going to operate on you, but I am telling you do not let anyone else operate on you. You could easily be put in a much worse situation". It all makes me want to curl up and die, honestly. It's easy for him to say that, he's not living with constant abdominal pain.

I am considering getting consultations while I'm in the states. But if someone puts forth viable plans for a doable reconstruction (big *if*), it's a complicated decision. There are the obvious reasons which I stated above, but also time constraints. I'll be in the states in August, and will be doing some consults in mid-August. But, Azriel's BarMitzvah is at the beginning of September, so I couldn't do any surgery until after we came back to Israel for his BarMitzvah, and then return to the states again after all the Jewish holidays in September/October? And doing surgery in America, who will be with me? Who will take care of my kids? We're talking a minimum of 6 weeks before I could travel after a procedure like we are talking about. I remember 6 weeks after the surgery to install the hardware-- I was in horrific pain, nowhere near transportable. (THIS blog post is from 5 weeks after that surgery...) It makes my head spin.

Then I think, I should go back to Dr. F (I have a tentative appointment this Friday), and put all my eggs in one basket (as if I have any eggs, or baskets, for that matter) and pay huge amounts of money for an unknown result. I've been doing that already.

As I said, it all makes me want to curl up and just not wake up one day.

But I am not dying, I do wake up every morning, whether I want to or not.

I do what I can for and with my kids, but that is less and less as time goes on. I haven't cooked a meal in G-d knows how long. [but after I wrote that sentence I decided I'd cook dinner last night. I did, and the kids loved it. But I was in such a foul mood, life is just too damn hard.] I took Dov shopping yesterday, it was a rare opportunity to spend time with him; he is so rarely home. What a special, amazing person that boy is. He hadn't been home for a month when he returned this Shabbat. He needed shoes, so me & my bronchitis and fever took a bunch of Tylenol's and went out shoe shopping with him. Then today I took Azriel shoe shopping (they needed different stores, I couldn't do them both at the same time.), after taking more Tylenol's. And I'll try to make some sort of dinner. Because I *am* alive, and Hashem still thinks I'm worthy of mothering these children He has entrusted me with. But if it weren't for them...?

I don't know how any of this is going to get resolved. I do plan on keeping writing though, so we'll figure it out. Or not.

How low does one have to go before he gets to see the promise of hope?

Everyone tells me it's unacceptable, not allowed in the least to give up hope.
I guess they don't know what this feels like.

Eighty percent

Again I say, once the body gets thrown-off with a health crisis, it can never return to the equilibrium it used to know. I have seen it with so, so many people. And so it is with me.

The most we can hope for is that magical 80% I was told by the head of plastic surgery 7 years ago when I was thinking of doing reconstruction surgery after NF. I didn't do the reconstruction, although I wrote and talked about it for many years. I wanted it. But in the end, it just wasn't medically safe. The point is that he said at the time that if he could predict what I can expect for my future health, he said 80% of what I used to be is a realistic goal.

I *think* I am close to, or at the 80%. The right thigh joint surgery can be declared a success, baruch Hashem. That is no small miracle. Hashem really delivered me to the right surgeon's hands. But, as I lie in bed at this moment with that sinister, inconsistent pain in my thigh and a low-grade fever (and a slight migraine on top of it), instead of being at the Chabad English-speaking women's sushi night for Chanukah, I am acutely aware of the 20% missing. I am not where I want to be, but it just is what it is. Those of you with more than 80%, please take the time to appreciate your health and strength.

I am generally in MUCH less pain than I have been in the 8 years since I got sick. I honestly never thought I'd see the day that I can go through much of the day without feeling pain (while being totally off pain killers!!!!). It hurts to do the physical therapy, and I am also doing hydrotherapy, but it's the kind of hurt that I need, the building-up-muscle kind. I am fortunate I can do that. The Tai Chi is fantastic for me, too.

But this pain I have right now, which seems to be pretty clearly cyclical, is a mystery. I have it for two to three days a month, with low-grade fever. Clearly an inflammatory process, but I don't know what to do about it except take Advil and ride it out. Do I want to go to an orthomolecular doctor (who I have known for years, and for a short while a long time ago was treated by him, unsuccessfully, but so many people have such positive experiences with him), and spend a lot of money, and open a whole new Pandora's box of possibilities and trying to fix this (whatever this is)? Or should I remain fairly passive and in the dark about what this is until it starts screaming at me more? (If it will start screaming at me more, that is).

I am starting to put together the times I was in acute pain before the recent surgery; the times I could hardly walk. Those times I stayed at home. I always thought it was all part of the thigh joint problem and will all get fixed with the surgery [which I just had]. Now I can clearly define what *was* fixed, and what *wasn't* fixed. Who knew there were two separate problems in the same area?
I'll see my surgeon from the recent surgery this week. I'll tell him about it, he may order a test or two, but I don't think it's connected to anything he can do for me. On the other hand, I don't really understand *what* it is connected to.

Living with the 80% means just to take Advil and ride this out, knowing it is temporary, and sends me to bed when it happens. My house can run on auto-pilot for a few days, nothing terrible will happen. (That was indeed a lesson that took a long time to be true,)

If I knew that I could reclaim more of the missing 20%, I'd do it. I am just not convinced that that can happen, and spending that kind of money on private, specialized health care is a big step to take, just for the sake of giving it a try. Maybe I can just reconcile myself with my actual- quite fortunate- place in my health history, that I got here, 80% pain free. I'm still weighing out the possibility of going to this special [private] doctor, but I'm not committed. There is clearly some sort of inflammatory process going on in me, quite in the same place that the surgery took place, and quite in the same place which would be mirror image to Gapey's original infection. Interesting, if nothing else. But when it hits, it sucks. Pain and fever are scary in my life. All the other times. though, when it's not hitting me, I am doing great, really. Greatest ever in 8 years.

One more comment, unrelated directly to my health...
I have been fielding unpleasant (for me) comments about having settled the law suit. Not about the fact of settling, itself, but about the notion in people's minds now that we have come into money and can do all the things we always hoped we could do. I tend to shrink away with people's questions about what we will spend it on. That whole phenomenon has caught me by surprise. Nobody can possibly understand the tremendous debt we have been in as a result of me not being able to work for 8 years (ongoing...), and paying for 7 years of full-time nanny's completely out-of-pocket, and the literally hundreds of hidden expenses you can't fathom unless you have had to live through something like this. After taking care of debt, we cannot live any differently than we have been living, or the settlement won't last us more than a few years. It is a necessity of our lives, not given as a luxurious gift, like being handed tickets to a cruise. We will do some long-necessary home improvements, then put it safely away to slowly take from to live on. That is what it is for. We weren't making it financially before- it just looked as if we were, because Robert is good with crunching numbers and taking bank loans (and refinancing the house mortgage....). But the debt is higher than anyone can imagine, and this will give us air to breathe, debt free. But in order for us to stay debt-free, we must continue to live on a very conservative budget, like we do now. So no, not much will change outwardly. Financial decisions are just as difficult as they were before the lawsuit (if not more difficult in a way). But we get to be out of debt, and have our falling-apart exterior of the house re-faced and painted.

In short, please don't make a comment that we can afford this or that now because you know we have a settlement from the law suit. You don't know all the facts. I want to be able to help my kids, please Gd, with weddings and apartments, and whatever they will need to start off their mature lives. I now have three teenagers (and a 10-year-old), and it goes fast.

I am grateful for the settlement. And thank you for your enthusiasm for me regarding this settlement. But let's keep financial assumptions out of our conversations. It makes me uncomfortable. Thanks!

ps- this Chanukah vacation has been awesome. We didn't go anywhere. We all decided to work on the clutter in the house. We all worked on different areas, and I organized and hauled things around- doing "normal" things- not at all to be taken for granted! Shifra and I organized [a lot of] a few rooms in the house, got rid of a lot of stuff, and worked really hard. Next we are going to paint the play room. It sorely needs it. Ya'akov worked very hard on our back garden, weeding and trimming trees and generally making it fertile to start to construct a beautiful garden there! It is already planted with a pommegranite tree, lemon tree, louisa (lemongrass) bush, and an fledgling olive tree. It is fertile with tropical potential. It just needs some slate stones, more exotic bushes, and Robert wants a goldfish pond with lovely seating around it.We'll see about that..... But the holiday has been full of light and family togetherness. What a gift.