Monday, June 24, 2019

Conversations with Creator and creation; the night before surgery

Many of us don't have the bodies we were born with. They get altered some time while growing up into them. Things break, get fixed imperfectly, cut and stitched, scarred. It happens.

Tonight I am saying goodbye to the biggest scar I have ever known on my body... Gapey. It is about the size of a child's violin, close to that shape, too. It's a skin graft with a huge hole behind it with a mesh and clips, and it looks awful...always has. I'm not a belly dancer, so I didn't care how it looked when it meant that I was alive. I'm not doing this surgery for the looks, though, but that will be a nice perk. We pray.

While I was home and packing, I, quite on purpose, didn't bring the cortisone cream that I use on it because it is constantly itching. Just a little tube of cream, insignificant for luggage matters, but significant for me to leave it home. (It itched like crazy over Shabbat, though, too bad I didn't have it...). It was symbolic for me to leave it home. Part of beginning to say goodbye to Gapey.

Tonight, after my pre-surgical shower, was the last time I'll have to Q-tip dry the random, thoughtless folds in the graft. That was also significant for me.

More significant though is that tomorrow morning my life will change. We think we know approximately how it'll change, but we don't really know. We hope I'll have less pain overall (after x amount of months of recovery) with the clips and mesh gone. That is the major reason for this surgery. And, with the graft gone, my inner organs and femoral artery will be more protected with real muscle, skin, and good blood flow over the whole region. It feels like I am going to wake up to a miracle.

I am not terrified. I have complete and total faith that this is the right surgeon at the right time. I have fear, but that is normal. I'm very scared, actually, noticeably shaking a little on the phone with the surgeon today. I have a lump in my throat as I write this...yes, a healthy dose of fear. Even regarding G-d, we learn that we are to have complete faith in Him, but also a proper dose of fear. That's where I'm at with this surgery in... in... nine hours from now.

Hashem, I know you have my back. Please spread your light and wisdom to the surgeons who will have my front tomorrow. Make the whole operating room filled with your healing light. Inspire and guide my surgeon(s; there are a few back-ups if needed). Keep me safe, My Lord. I love and serve you with all my heart and soul every day, every waking hour. I will always continue to do so.

Please also spread your divine light into my children at this difficult hour, they are also scared and worried. And while you're at it with my family, please instill in my beloved husband health, strength, and inspiration during these difficult hours while he waits for me in the waiting room. His job is not easy, please continue to keep him in your light and power, mentally and physically.

I am ready.
I am not ready.
I forgot to say goodbye....
Goodbye my Gapey. We've had a tumultuous relationship over these past 12 years. I can't believe this is it, we won't ever see each other again. You arrived in my life on Jerusalem day, May 2007, and you are being dismantled on June 24
th, 2019, twelve years later. It's unbelievable. I loved you, I hated you. People stared at you, you are a creepy sight. I love that you saved my life, and I will always love you for that. (I'm crying). I'll love your sacred space after tomorrow, I promise. I'll take care of it always. You will remain in my heart, and I am OK with letting you go. We are changing, morphing into something new that only I will feel. Goodbye Gapey. Thank you for your proud service.

Here we go... chapter 12.

Yours, Sarah Rachel bat Tova

Friday, June 14, 2019

The calm before the storm

...except that I'm not so calm inside. I show a calm exterior, but don't be fooled. I'm extremely nervous about the surgery.

But for now I have so much to worry about regarding scheduling, and still we're looking for an apartment for the first three weeks of July at least. If it included the last week of June, and the last week of July as well, all the better. We have some options, but one option is in a building with no elevator, and the apartment isn't on the first floor. I don't know if I'll be "doing stairs" directly after the surgery. I just don't know what to expect at all. There will be the big Gapey area to deal with after the skin graft is removed (!!!!), and the wound (hopefully small) from the muscle graft from the other leg. I just don't know what to expect as far as my mobility after the first few very difficult days. I'll be in the hospital for three days, then out-patient. That whole thing makes me nervous. I am worried about pain levels, but actually am traveling with my own pain meds, just in case the doctor is one of those "anti-narcotic because of the epidemic" doctors. I'm not taking any chances.

I could be blowing this all out of proportion, and it could all go very easily and simply. Wouldn't *that* be awesome. Even somewhere in the middle of insanely painful and disabling, and very easily and simply would be acceptable. I'll let ya know.

We are flying this coming Thursday, and the surgery is on the 24th. I am ending also with the day clinic at the psych hospital, my last day is Tuesday. I'm going to make a [gluten free] cake for the occasion for all my cronies there. I will be in touch with them when I am well enough when I return, which might not be the same thing-- I mean returning and being well enough. I might  (I will) need more recovery time when I get back. When I'm ready I'll be back in touch with them and check-in, and follow-up with some after day-clinic procedures. I'll have my medicine follow-up with them, so I'll have a reason to come in every now and then.

As for today, I was happily cooking for Shabbat, while listening to a tape-- yes, a tape-- that I received in the boxes that my brothers packed up for me from my parent's house. It was a tape of the Zamir Chorale of Boston, from 1992, when I was singing with them. I was singing along to all the songs here in my kitchen in Israel, and having a grand 'ol time going down memory lane.

I feel good, I feel optimistic in general about this surgery. Gapey is getting closed up. The hardware is getting removed.... and is being replaced with software, so to speak. This is the surgery I have wanted and planned for many years, and never got around to doing it because either my health wasn't up to it, or I had family celebrations to be "on" for. This is also not really the ideal timing for the kids, but it's happening. And they are adjusting. They are planning.

Oh, I forgot to say, Robert is going to be with me the whole time I'm out there. We decided that is better then flying Shifra out to take care of me and having Robert come back here to take care of the other kids. She is the kid, I am the mother, kids shouldn't need to take care of parents, at least not at this age and stage. Adult kids take care of elderly parents to a certain extent, yes, but that's not what we're dealing with here. She's 16, and this is not a fun vacation, she deserves to be free to be 16. Robert will stay with me the whole time, and we both feel so much better about that. It just never felt right to have Shifra come take care of me. (yes, she's disappointed, but I think she had a different view of how things would be there) It's just not what I want for her, or for me. It didn't feel right, and I listened to my deep inner voice on this. Just after we made this decision, I read an article on Facebook about not making kids be in the caretaker role for parents. It was talking about this type of situation, or of a mental health situation (where the kid feels the need to help get the parent out of sadness that is not about the kid), where it is just not right to expect a kid to take care of a parent. There are exceptions, of course, but they are less than ideal. So I'm glad we could see clearly and be able to plan this way. I am lucky Robert is a teacher who has off summers.

OK, gotta finish preparing for Shabbat. I'm not sure if I'll write again before we leave, I'll be pretty busy, I have to get Azriel ready for camp (shopping), and pack and get ready for this trip. But I will update as soon as I can when I get there.

Shabbat Shalom!

Friday, June 7, 2019

Surgical details

Things are different than I thought. I'm so glad I finally got a call with the surgeon the other day.

This is getting real. Like really real.

I am questioning myself second, third, and tenth times if I should go ahead with this, but going through all the moves of going ahead with this. I want the reconstruction so badly, I've wanted it since I had NF. Now seems like the ideal opportunity, but it's so friggin' scary. (it will always be scary)

And like most surgeons, he told me that it might not get rid of my pain. We don't exactly know what the pain is from, so how can he say this will get rid of it? He can't. But he's doing everything possible to make the conditions in my gut "right" by taking care of inflammatory situations.

First he's going to explore. There are decisions that can only be made "inter-operatively" (his words). One of them is the biggest decision, whether he can take out the mesh or not. He is fairly sure he can take out the anchor clips, of which one definitely always bothers me, so that is very good news. He can take out and replace the mesh *if* it's not integrated into my muscle. If it is integrated into the muscle, he's going to leave it be; taking it out would cause more damage than it's worth. If it is free floating, he will definitely take it out (because that could be a source of irritation). *If* he takes it out, I asked what material he will put in it's place... he said my own muscle. Turns out I was missing a big piece of information with this surgery-- a muscle graft. From my leg. He will need it to cover the femoral artery which is exposed now, and has been since I had NF. I can see my pulse, we don't have to press my arms to get a pulse- my femoral artery pulses along there and it is totally visible. The surgeon wants to protect it by putting a muscle graft over it, before closing it up with my own healthy skin (not a graft). Think of stuffing a pillow before sewing it closed.

So he says that the leg muscle he is grafting from is one that isn't used a lot, it is often used for grafting. I'm a little nervous about this mostly because my skin graft donor site, 12 years ago, left me with lots of issues and problems in waiting for it to heal. It didn't heal well, got secondary infections, and basically hurt me for most of that first year after NF. This type of muscle graft is supposed to heal well....let's hope.

I do think that if he can get the mesh out and replace it with my own muscle I might be better off inflammation-wise, having no more hardware in my abdomen. But we might not have that choice if the mesh is very integrated in my muscles of the stomach wall. I'll only know after I wake up what he wound up doing.

He did a good job in assuring me that I will have a closed wound when I wake up, that I won't need skin expanders, that he can pull the healthy skin together after removing the graft. That is *awesome* news. I won't have a graft anymore! Nothing to cause rashes and itching all the time, spontaneous bleeding, and inflexibility. It will be gone! I'll have one line of a scar closing me up; that sounds like a dream come true for me.

About the spontaneous bleeding-- he thinks there might be a little osteomyelitis going on in the hip bone. I told him I suspected that before, and my bone scan came out negative, but he said anyway he's going to be exposing that bone, so if there is a little osteomyelitis on it he can debride it (take away infected parts of the bone), and it wouldn't make any difference in my recuperating process.

Another main thing I found out is that I will only be in the hospital for three days after the surgery, and will *not* need rehab (I'm sure that makes mu insurance very happy). I will need to go to a "person's" house when the three days are up. I'd like to go to my friends in New Jersey (hi Dev!), but the commute might be too much for me. But if we rent a car it's doable. I just can't walk around Grand Central station and get to the Jersey transit buses, etc. I'd rather stay in Manhattan, closer to my doctor, but I don't know anyone who keeps Kosher in Manhattan. I know many people do, *I* just don't personally know them. I might look for a community (like the bikur cholim in Manhattan) to help me out and maybe sponsor me there for a while before I can really travel. Like Maybe the first week to ten days I'm thinking. The surgery is June 24th (I can't *believe* how fast that is coming up!), so I'm looking at getting out of the hospital on the 27th, and I want to be located in Manhattan, at least for the first week to ten days. I'll work on that.

That's about all the info I have for now.
I will have another conversation with the surgeon before we leave on the 20th of June. He said for his overseas patients that is routine, two conversations before the surgery. Sounds reasonable to me. Also, he confided that he hadn't yet had time to go over my scans with his radiologist expert, and he still wants to do that. So any new findings there will be revealed to me in our next conversation.

I basically feel more at ease that I have more information now. The scary part for me that I didn't know about before is that he's doing a muscle graft from my leg. The good part is the relatively short hospitalization, and no necessity for rehab. He said he's going to be giving me stomach exercises to do, and prescribe a certain amount of walking per day after I've recovered sufficiently. He said if I do need any physical therapy, that will be here when I get back home. Makes perfect sense to me.

I have a bunch of blood tests to do, and other pre-op things, and insurance things to work out still.

It looks like Shifra will be coming out to NY to help me when Robert goes back home. She really wants to do that. I wish she had a drivers licence, but I guess if I do go out to New Jersey to my friends that I'll have to do the driving. It's still up in the air as to living quarters for the month of July. As I said, ideally I'd like to be in Manhattan.

I guess this is going to happen. It's so scary on so many levels. Open surgery on my NF area. But it will be worth it. Please G-d watch over me!!!

Sarah Rachel Bat Tova.

Monday, June 3, 2019

We have a date! ...and fear.

It's coming up fast... June 24th is the date.
I finally heard back from the surgeon.
June 24th.

We'll be flying out on the 20th. Robert is going to stay in NY with me for about three weeks, then he'll head back. It's important to me that he gets to visiting day at Azriel's sleep-away camp. There was the year neither of us went because I was after my mesh surgery and in incredible pain, I needed Robert. Dov was not a happy camper, literally. He was set up for the day to hang out with his best friend and his family, which is like our family, but he wasn't warned beforehand that we couldn't come. I kept thinking I'll make it. But I didn't; it's a three hour ride to the camp, I couldn't make it. He cried. :(  I took him out to a movie theater movie after he came home from camp, just me & him, to "make up for it", but it didn't make up for it. Here is the blog entry about that.
So I'm [hopefully] sending Robert back to Israel to be at visiting day for Azriel.

I still have a lot of questions for him, I hope we have a Skype conference soon. He said he'll go over all the information with me soon. He requested photos of the area so he can look at them and clarify things as we are talking. This information that I need is vital. I need him to answer my questions.With the help of G-d, everything will fall into place. But as of now, it is looking like I'll go out there June 20th, spend Shabbat there, then have the surgery on that Monday. I'll still be jetlagged, but a little less after 4 days of adjusting. My immune system is often weak when I'm jetlagged, but I'm hoping the four days of resting will help matters.

I'm getting paranoid these days. Every time I thought it was a good time to do this reconstruction surgery in years passed, something happened with my health...another bout of cellulitis, too much pain, a million things. Then there were bar & bat Mitzvah's that I needed to be healthy for. Now, I am looking for a sign; a sign that I made the right decision. If something happens with my health, that will be a sign not to go ahead with the surgery. But I want a positive sign. I need to know I made the right decision, and that it's blessed by Hashem. So far my immune system seems happy, my kids have been sick, and it seems I got out without catching what they had. That's a good sign. I have like three or four little cuts these days, and I keep wondering if one of them is going to get infected and give me sepsis again. I know to you it sounds crazy, but to me, I think about it with every cut I get. I had sepsis, and Necrotizing Fasciitis, nothing is too outlandish for me to think of. Call it paranoid, but everyone on my NF support list feels the same way. It's just what happens after such an insane disease gets to you.

I remember how painful the mesh & clip surgery was. This is in the same place, but to take out the mesh and clips and put in something organic. I'm worried about pain levels, and how to control it. The mesh surgery was painful for an entire year, and only lightened up when I started on the Fentanyl. I do NOT want to be forced to that route again, obviously. I think the skin stretching will be painful, too, but it's worth it to get rid of the skin graft, if that's possible. I sent the surgeon pictures, we'll talk soon. It's only Monday morning there, beginning of the week. I sent the pictures on Friday. I will write to him tomorrow about scheduling a Skype if I don't hear from him today.

I can't believe this is going to two and a half weeks. I'm nuts. But you know, people will do a lot to live a life without pain. I don't want to be on pain meds, and please Gd I have a decent amount of lifetime in front of me, I need to be out of pain. Even if the steroid shots worked (which they didn't), I'd be doing this, because they don't work forever.

I'm nervous, and have so many fears. I am working on my fears in the day program with my shrink. At the same time we are in the process of closing up shop for me there, temporarily. I'm getting a discharge, and when I come back we'll be in touch and my follow-ups will still be there. I don't feel ready to be done with that has been sooooo good for me on so many levels. OK, one thing at a time. I'm going to NY for the surgery, I'll be gone for at least a month, so I need the discharge. Nothing is a closed door though, they are so incredibly supportive there.

Oh, and to make things interesting (never a dull day), Robert and I spent last Thursday night in the ER with me with a horrendous migraine. Just to spice up life a little. The Cannabis didn't even help, it was so bad. They changed my "cocktail" a little (a lot), and although it helped the migraine, I still had the same migraine on Friday, but I was able to sleep it off. It started to come back on Shabbat day, and I was able to sleep it off then, also, and since Sunday I've been free of it. I started wearing my magnet necklace again, not sure if it actually works, but it can't hurt. That's all I need is my migraines coming back. I'm trying to figure out which food I might have eaten to trigger them- I had headaches all week last week- and it seems it may be from peppers that were in the marinade for olives. I ate those olives all week, and every day I had a headache. Paprika gives me headaches, and paprika is made of peppers, so I try to stay away from peppers, but I didn't read the ingredients in these olives. I'll learn.

OK this is too long already. Thank you for getting to the bottom!
More to come after I speak with the surgeon. We'll have answers, please G-d.

Saturday, May 25, 2019

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)