I won't set off metal detectors anymore! Almost all my staples are out!
Yesterday I got amazing news from my surgeon... my healing is way ahead of schedule, and I can go home after my appointment next week!! We were originally told we'd need at least 30 days from surgery to stay put, and only then would we re-evaluate how the healing is going to see when I can get on a plane and return home. Well, We haven't even come close to 30 days, and he is so pleased that he said if I needed to I could go home now (!), but ideally he'd like to see me next week before I go. So yesterday the medical assistant took out almost all of my hundred+ staples. She left about 6 or 7 in still, just in the area where there is the most tension; where he worked most to cover up gapey with muscle and skin. That, unsurprisingly, is the part that hurts me the most from everything he did. But it will get better, I know and believe that now. The recovery has been tremendous. What a total free gift from Hashem. Proper healing, ahead of schedule. I could never have guessed that this would be the case.
me and my surgeon, Dr. Margiotta, and his physician's assistant Lauren, who has been so very helpful throughout this whole time.
And you know what? I have had no PTSD whatsoever this whole time. I mean, gapey was messed with big time, and I had no PTSD. I think that's because I had such a great preparation for six months beforehand, at the psych hospital and day program that was helping me heal my PTSD. I think it all played a factor in my amazing healing.
So we are terrifically grateful to be going back home in about a week and a half. We'll be there for a week before Dov's induction into the army, which at first we considered the possibility that we might miss the whole thing if healing wasn't going well. I have so much gratitude it's unbelievable, really. I miss home so much.
Having said that, we have done some very meaningful things while we've been here. You'd be surprised what you can accomplish even being in a wheelchair. (I can't walk more than 5 or 10 mins max at this point, and my doctor said that is a lot and don't push it). Robert has wheeled me all over this city! We went to the 9/11 memorial museum which was very poignant. It had videos of survivors and first responders telling their stories, plus many artifacts and personal tributes to individual people. From there we went to "Ground Zero", where the world trade center towers used to be, and we saw the "Freedom tower" as well. Came home exhausted from all that!
On another day we went to a local museum here in the Lower East side, talking about how this one particular community center assisted with childbirth, and general the needs of the poor and ill immigrants living in the squalid conditions of this area. It was done so well that by the end I wanted to leave a donation for the place! It still operates as a community center for arts, soup kitchen, and general reaching out to needy community members.
Then came yesterday... the day I got all (most of) the metal armor taken out of my abdomen! Definitely a landmark day for more reasons than that; I finally, for the first time in my life, went to the top of the Empire State building! Yes, I grew up in New York, and never went there. (I've never been to the statue of liberty either, but that will be for another time.) It was wonderfully exciting, **but** unfortunately a rainy day. There were no lines, though, so at least that! I got some great pictures from up there in the clouds, but one bad thing happened... taking pictures in the rain broke the screen of my phone. I'm so, so forlorn about that. I just basically lost communication with the world, you know? We are so connected to those phones! Good thing I have this blog and my laptop! :)
So, after buying some obligatory Empire State building souvenirs, we went out into the rain (totally unprepared, without umbrellas etc) and on the way back to the ferry we decided to stop into the hospital where my surgery was because we had left some personal medicine there. It took over an hour to get people to search for us where my meds could have gone to, and in the end they were nowhere. I was cold (air conditioning after being out in the rain) , tired, and in pain (remember, staples had just gotten taken out earlier that day), and it was getting really late in the evening. I was getting very cranky. Then we went to go to the ferry to get back to the Lower East Side where we've been staying, and it left the dock without even opening the dock for people to board!!! And there we were in the rain, getting quite soaked to the bone. We then took a cab back home. I was wet, cold and cranky when we got into the apartment with our friends. Immediately, though, they cheered us up! It was wonderful! They were so happy to hear our good doctor news, they said some Psams (tehillim) to praise G-d, and gave me a blanket for around my shoulders, and then a cup of mint tea appeared in my hand. Ahhhhhhh, how quickly moods can change, thank G-d!
So it turns out that our remaining plans are that on Tuesday of next week we are transferring to my dear friend Devorah in New Jersey (we grew up together). We'll be there for the week (with a ride back into Manhattan for my Thursday appointment for the remainder of my staples hopefully), and then take off for home around the 23rd or 24th. We haven't rearranged our plane tickets yet. That's for after Shabbat. I miss my kids and my home so much, I can't *wait* to get home!! Surgery really makes one want to be home. And the apartment shuffle, although it worked out, has been trying in many ways. But the end is in sight! As a gift for our gracious hosts, we have shopped and prepared all of the Shabbat food for them and us together. The lady of the household went to the botanical gardens as a getaway. Yay!
OK, getting ready for Shabbat now, so everyone have a wonderful Shabbat Shalom!
Wow, American blueberries. I love them so much. Can't get enough of them!!
Wow, fourth of July fireworks, very awesome! (Robert took me for a 10 minute walk on the FDR drive where we are staying, in the wheelchair, and we had a great view!)
Wow, what a whirlwind this has been.
You'd think that it's enough drama when you have major massive abdominal surgery in a country you don't live in, and need to stay there, leaving your children on another continent, for an entire month. Yeah, well that is a lot of drama.
But what's even more drama? Thinking you have a place for your recovery for the month, and then being told otherwise. We had gotten comfortable there, in the apartment that was set up for us to be in for the month of July. We had it alone, and it was quite comfortable. But then, completely out of the blue, the people who own the apartment, who are away at a summer camp for July, got a message to us (didn't tell us directly) that the man of the family must return to the apartment for his work, and we must vacate. Ugh! It was so shocking, really, you can't imagine. I mean, where are we supposed to go? We have to stay close to the hospital here in the lower east side of New York (NYU), and we don't have hardly any connections like I used to have in my younger days. This was crazy, we had to leave that apartment within a day.
But, as we know, Hashem works in mysterious ways. The woman who made the connection for that apartment for us in the fist place, also lives in the same building. When we told her what happened, she immediately invited us to stay with her and her husband. Her children are away at summer camp, so they have a free room. We called another connection, too, which still might work out, but in the interim we moved all our stuff (not a small amount) into the other couple's place and are all cohabitating easily, B"H. They are going away for the weekend, so we'll have the space to ourselves, which is nice, but it's also really nice to be with these people. Interestingly enough, I knew this woman 25 years ago, back in our single days in Jerusalem! We were friends (through my dear friend Devorah who was there at the time, too), so we are really getting re-acquainted here now, which is very special.
But the --brother-in-law in Brooklyn-hospital-hotel-apartment-different apartment-maybe other apartment (as yet unknown)-- shuffle is draining me and Robert. He's the one who has to do all the shlepping, poor guy. I'm not allowed to use my stomach muscles at all, so that is very limiting. You'd be amazed at how much you use your stomach muscles. But since mine have been all rearranged, we want them to heal. It's been mentally trying, though, more than physically trying, this apartment ordeal. I knew going into this that we didn't have a very secure plan, but then one fell into our laps and we thought we were set. Nope. It's a little chaotic, and hard to be a guest when recovering from surgery, but we're managing.
My recovery is going pretty well, I think. The doctor last week was very happy with it, and I'll see him (I believe he'll be there rather than just his medical assistant) this Thursday. I feel like things are going along OK, though. There are times of more pain and times of less, and I still average one pain pill a day (Oxycodone), which is awesome compared to right after surgery. He did a great job.
When we take off the pressure wraps and bandages for me to shower (yay, drains are out! I can shower!) I barely recognize my body. It looks normal; whatever that means for everyone. But for 12 years it looked (and felt) not at all normal. I can't believe the skin graft is gone and that there is muscle in gapey and my upper thigh. I just can't believe it, honestly. I am not used to this at all. Taking the soap gingerly to my incisions puts my hands over a body that is just totally re-formed. I never thought I'd do this surgery, never thought I'd have a normal body. Hey, now I can go back to my belly dancing career! :) Ya. Moving along....
I am pleased with the result. And feel so much better that the muscles are all rearranged and covering my innards. It will make my life safer for many reasons, and healthier, please G-d. And, in 4-6 months, we'll know if the abdominal pain I have suffered from spanning two years (minus the Mayo clinic steroid shots) might be over forever. If it was from the folded-over mesh, or the clips, that has all been taken care of now. Unbelievable, really. Unbelievable. I found the right surgeon, at the right time. Nobody in Israel was willing to do this. So, here I am. And here you are with me. :)
We are invited out for both meals for Shabbat from people in this building (it's a very heavily Jewish building), so it will be nice to meet new people. But I really need to rest, so we won't stay long.
Shabbat Shalom to all! (or Shavuah tov to my Israeli friends and family who are reading this after Shabbat!)
It's also good, it's a good process to heal from this elaborate surgery. But OMG it's hard.
I'll start off by saying the surgeon is very pleased with how things went down in the actual surgery. He didn't find things he was hoping wouldn't be there, and he found it all relatively according to my scans and exams. In other words, no surprises, which is amazing. He did find that the mesh was folded over on itself, which could definitely have been causing my pain. He was able to take out the clips that were bothering me, and about 60% of the mesh, which is really good. The other 40% was too incorporated to remove, but since it is incorporated, it shouldn't cause me pain.
He pulled, cut, manipulated and flapped all sorts of muscles in my stomach and upper thigh to get proper coverage over gapey. It is really incredible. The big reveal was yesterday, I saw what he did. I now have one big, smiling scar from hip to hip, like 4X a c-section scar, and a perpendicular one by my belly button. That's it. No more gapey, no skin graft. Amazing. Incredible. I honestly never thought I'd do this surgery, and here I am, after it now. I did it. I'm bad*ss.
But I cried when physical therapy came and told me we are getting me out of bed. "I'm not ready, give me another day" Nope. Now was the time. So I didn't have a choice, I did that. I got out of bed on Tuesday, not even 24 hours from the surgery. G-d that was hard. Then they took out the catheter, and I had to use the bathroom independently. All these stages were so insanely hard, I cried. But I had to do it, no matter how hard it hurt. And it hurt. A ton.
In fact, I don't think I've experienced this much pain since the mesh surgery (2010), and before that, not since NF. It's on that level. You don't want to know all he did with muscles there in my belly, of course it's going to hurt like a b*tch. I said the scar was like 4X as big as a c-section, but the pain is much more than 4X that. Muscle grafting is so painful.
Getting out of bed, walking around to the bathroom, the occasional walk in the hallway, it's all so complicated. The doctor doesn't want me straining at all, so I'm trying to do everything with relaxing, but it hurts so much it is hard to relax, obviously.
The nurses help a lot to be on top of the pain meds. The nurses are *uh-may-zzing*, actually. So kind and sweet, always trying to help, always answering the call button within a minute, always offering alternatives if they can't give you narcotics at the time you feel the pain coming back. They are just so sweet, all of them, I am blown away with their kindness. I was in culture shock that first day when the nurse was so nice to me-- it's a pretty different experience (read: radically different) than most Israeli nurses. I definitely understand the concept of medical tourism-- it makes sense to me now, and especially after Mayo last summer as well. I know one can have a bad experience here, but I have been very fortunate indeed.
I just still can't believe that Gapey is gone. I'm good with it, don't get me wrong! I just want the pain to subside to easier levels. Today is 5 days after surgery, and while it's a little better, I'm still moving *very* gingerly, and in lots of pain. The meds they give me for pain (Oxycodone & valium, believe it or not, it helps with pain too) usually give me a big nap. They put me right out, so I'm sleeping during the day a lot too, which I am pleased about. Also at night, last night I slept through the night for the first time since surgery (except when the nurses woke me to take my vitals, but I got right back to sleep thereafter).
OMG, did I tell you about my room?? No? Well..... It's the best room on all the floors, the corner room. The size of it, well, Soroka hospital (the one in my city in Israel) would have put 6 people in it with flimsy curtains surrounding the beds. This was a private room, all mine! Purely by chance. The view, it was stunning. (I got discharged today and am currently at a hotel). I had a corner room with the East river outside, and the skyline all around the river. Sunrises and sunsets were stunning, we took so many pictures. There was a private helicopter port right under the window, so we saw helicopters landing and taking off all day. And the barges, yachts, and boats that passed by were all stunning. I wished I could be on one! Amazing room, again, very lucky. There was a comfortable pull-out couch for Robert to sleep on, and he slept well most nights. If I was up and in pain, he was up though, my night in shining armor.
Seems like the kids are doing well. We've "seen" each other on the phone (face-time) a lot, and spoken with them a lot. It's one week down, five more to go. I hope they'll be OK. If you see any of them around, just check in with them OK? :)
It's almost Shabbat in New York. I miss Shabbats in the Holy land. There's nothing like them. This blog is long enough, I'll write more soon. Next week (July 1st) we go to a friend-of-a-friend-of-a-friend's apartment, which she is lending us for free for the month of July. It's an amazing situation, and I am so grateful!!
Have a Shabbat Shalom to all! Coming to you from a hotel in the neighborhood where my mother grew up (Murray Hill), Sarah Rachel Bat Tova.
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 howit'll change, but we don't reallyknow. 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 24th, 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.
...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!
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.
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 happen...in 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 framework....it 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.
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)
I am in a strangely good groove these days. I say strange, because things by FAR are not peaches and cream. I am still going to the day program at the psych hospital, and the days that I've had to miss recently have been hard for me, I still very much need that program. I have abdominal pain on a regular basis, I may go through difficult surgery in just over a month (but I still don't know yet), and although I played my horn in pubic last week, I haven't opened my horn case since. These things are the hard things... but I feel like I'm in a good groove. Go figure.
This passed Monday I got steroid shots for my abdominal pain. Except it wasn't at all like the ones I got in the Mayo clinic. I inquired about that, for sure, and even pushed the doctor a little to do it the way that worked last time. He said he's trying to get a diagnosis, not simply putting in steroids to take the pain away. He's been looking for a diagnosis ever since I walked into his office. All the tests I did didn't show anything. He did the steroid shots into my back, not above my hip bones and directly into the stomach wall muscle, where Mayo clinic did them. It's completely different. He did it in my mid-upper back. So weird. Again, like at the Mayo clinic, I have to wait the requisite 7-10 days before I feel the effect of the steroids. So, I'm still in pain, but in the waiting period.
But even with all this, I am in a good groove. I think it's largely attributed to my classes with Rav Katz, and the spiritual emmunah (roughly translated as faith/spirituality) work I am doing with him. Not directly one-on-one, but in a "chaburah", a group of like-minded people, all striving for clarity of emotions and stronger emmunah. It is very positive and actually right on the mark for me. He teaches us how to go through our emotional thoughts and feelings to feel where it is in our body, and how to bring the issue into the "light" (attached to Hashem) and melt it. His teachings and classes bring me an inner peace which I haven't known....maybe ever. I am meditating sometimes, which was something I never related to before. I am reaching heights and connecting with My Creator. I am comforted by the Rav's teachings, classes, and webinars I tune into three times a week. And *that* is why I'm in a good groove!
When spiritually things are falling into place, it helps you sort out all the worldly stuff. I am so glad I found him. I have Yocheved Frischman to thank for that (the wife of the Chinese medicine doctor I was seeing last year).
So yeah, things are still hard going, but I have a background of relief somehow with the work I'm doing with the Rav Katz classes. I still haven't really worked, like nitty gritty work, on the childhood sexual abuse. That is yet to come. I haven't figured out how to work it into my book yet, either... I'm sure that will come to me, though. I still have CPTSD, and always will, although the medications I am on now help the symptoms of it. I am sleeping through most nights, thank the Good Lord, and am in a good groove with Robert, also. Lots to be grateful for.
The answers I need will come when they are supposed to come. And when they do, I will surely let you in on them. :)
I played horn in public for the first time in like about 10 years today! It was a small thing, but meaningful. I played for the day of remembrance for our fallen soldiers and civilians who were victims of terror. The very moving ceremony was at the hospital where I go every day for the day program. I played the "TAPS" as the flag was being lowered to half mast, and another song, and our country's national anthem, "Hatikvah", with piano accompaniment. I was very nervous, but it went off really OK. My therapists and group members were all there, it was heartwarming for me. The music therapist I have been working with, Gil'ad, encouraged me to do it, and I am very glad I took the risk.
You know, my therapists have spoken to me about becoming a counselor there at the clinic. They thing I am cut out for the job...I'd get paid and everything. They would give me a training course, and I'd do what the counselors there do; assist and facilitate the patients in the day clinic. I am honored that they see me as capable of this, and I am planning on taking them up on it, upon my own discharge. I don't know when that will be, but we are discussing it. I have an intake interview next week at the organization called "Inbal" which is for in-depth therapy for women who are, or have been, victims of sexual abuse, at any age. I assume that after the intake interview, they will assign me a therapist, and I will transition to there and eventually be discharged from the day clinic. It won't be a daily thing at Inbal, it's only once a week. I think I will miss the regular schedule that being at the day clinic has given me. But if I go on to be a counselor there, I'd still have that. Wouldn't that be a very interesting and good step for me? You never know what's around the corner. I would have never thought of this as a career move, but I like it. It takes the me that is a doula- helping people, listening to people, facilitating transitions. I do that naturally. It gives me a chance to *give*, which has been missing from my life since I became ill.
I sent off the MRI to the New York doctor, I haven't heard from him yet. I am tentatively planning on the big surgery at the end of June, and staying in rehab for the month of July, in New York city. It's scary, but the closer the time comes, I am getting sort of excited to have things fixed inside me once and for all. I have the abdominal pain back, and am going on Monday for steroid shots for that, but that is not a sustainable solution. We don't even know if it'll work this time, or for how long.
It is scary if I think about all the things that can go wrong. I have decided however, not to think about that. When those thoughts come into my head, I just pop them like a bubble. I don't need negative thoughts in my life. I have to be realistic, but I am trusting this particular [highly recommended] surgeon, and it will be hard going, but I believe I will be happy with the quality of life results. With the help of G-d, always. What is supposed to happen will happen. And I will pray hard.
Tonight and tomorrow we celebrate Israel's 71st birthday. It's one of my favorite times of the year. It's really amazing to live in Israel at these times. I feel so, so tremendously blessed. Yes, the beginning of the week had a shower of Hamas's rockets onto my city....hunkering down in our bomb shelter, getting caught outside during an air raid at one point. That was scary, actually.... Shifra and I were out, and the instructions are to get out of the car and go to someplace safe, of just lie down with your hands over your head. So when we got out of the car, we looked up, and there was the rocket flying right over our heads! We screamed and ran, but to where? There was nowhere safe to go. I was a little freaking out, Shifra was screaming. It was definitely traumatic. I looked up half a minute later, and I had the privilege to see the iron dome defense system intercept the missile for us. No more missile above our heads. We had to worry about shrapnel falling, and we put out hands over our heads for that, but the main fear was gone. Hashem, and the iron dome, preformed a miracle that night. I believe in Hasehm's miracles when it comes to the land of Israel. I've lived here for 24 years, I've seen a lot of revealed miracles happen here. Celebrating Independence day is an honor, and a deeply religious rite in a way. I see it as mixing religion and state, yes, but that is Israel nowadays. And I love my country. It is pure honor and privilege to live here and bring up my children here.
In August my oldest son, Dov (20 years old) will go into the Israel Defense Force. He's been learning in Yeshiva since he finished high school, and now it's time do "do his time" so to speak. That will be a huge transition for all of us, and I already feel nervous about his safety. But I trust Hashem. It's the best I can do.
So happy Israel Independence day, everyone! Let's hear it for the blue & white!!