A completely new perspective

I've been home now for five days. One of them I slept all day, the next I tried to catch up on important things, then there was Shabbat where I slept a lot, but got to synagogue, happily, easily, on my own two feet. Saturday night I started prepping for my colonoscopy & endoscopy to take place on Sunday afternoon. So, if anyone knows about prepping for a colonoscopy, you'll know that that was a lost night of sleep. Just watching movies and visiting the loo. I was still dealing with jet lag, so it was not a huge loss. The test the next day went off without a hitch, thankfully. They did the biopsies that Mayo requested. The only result I know already is that they didn't see Crohn's disease...which is great. My father (of blessed memory) had Crohn's, so I was genetically predisposed to it. The other things they tested for, like Celiac and a few other things I'll have to wait until the pathology comes back...it could take a while because a lot of holidays are coming up- lots of non-working days.

Oh, I've written a whole paragraph without saying that I am still out of pain!!
It is nothing short of miraculous. I am still in awe just to walk around and not be in constant pain. It's been almost a year of constant, unrelenting, strong abdominal pain, with no relief except lying down. A few well-placed nerve block shots, and I'm a new woman. I know it is just an analgesic, and we haven't gotten to the core of the problem, but I am living kind of in the moment and REALLY enjoying this! I went to the beach today with Shifra, and the huge waves wracked our bodies and threw us all over the place, and it didn't hurt me! I walked up the ramp back to the parking lot-- easily! Last time I was at that beach and walked up that ramp I was with my friend Ken & his kids, and I was in excruciating pain. I am in awe of this miracle. Why didn't anyone in Israel recommend doing nerve block shots? And I now have to investigate how to have them renewed should the time come that they will start being less effective. What I am praying for is something that was explained to me in Mayo that these shots may have the ability to change the pain pathways in my brain/central nervous system and teach them to stop misfiring. Then it wouldn't come back. That would be a miracle on top of a miracle. But at the moment I am trying to think realistically and go about finding a pain doctor who is qualified to do this procedure.

In the meantime, in the not-so-back of my head, I am considering surgery.
Not just exploratory which the doctor in Afula suggested he would be willing to do.

This would be in New York.
I didn't yet write about the surgical consult I had in New York on one of the last days I was there. I was annoyed I never got the surgical consult at Mayo clinic, but I was sent to this reconstructive plastic surgeon at NYU (New York University) by someone I met at Mayo who had surgery with him, also regarding a problem with an abdominal mesh. This guy specializes in reconstruction involving meshes. I saw him, he did a thorough exam, I showed him my CT and MRE, and he put forth a plan of how to fix me. It was astounding. He was saying things nobody else dared to say. He had a logical response to every negative point the surgeons in Israel made as to why not to touch things. I would say "the plastic surgeon in Israel said ABC about that", and this guy came back with a logical plan to deal with that problem, with DEF, so to speak. It was very in-depth. He did the exam with me lying down, and also standing up. I learned a few things... one is that the mesh is not covering my bowel. It is basically exposed with a paper-thin skin graft stopping it from being totally outside my body. No wonder it hurts and lots of bowel irritation is happening. Next he said, after feeling for the boundaries of the mesh itself, "this is a very thick mesh, we don't use these anymore, of course you can feel it". And since only a thin skin graft is covering it, and it is quite probably a collection of inflammation (which wouldn't be seen on the CT) all around it, yeah, that's going to hurt, and radiate all over the abdomen. Also the clips that hold it on can be done away with. This surgeon recommended an organic mesh system that integrates naturally with my own tissue. He would insert that instead. I was hoping he could do a muscle flap with my stomach wall muscle and not use a mesh at all, but he didn't think that was an option with the small amount of stomach wall muscle I have. Lastly he would do away with the skin graft and reattach my healthy skin sides back together. It would be a very long, complicated, intensive surgery. I would have to stay in New York at least a month (where, though??), and he's not sure he'd let me travel after a month, we'd re-evaluate. There must be Kosher rehab places for patients like me...

For now, my task is to get a new MRI. The NY surgeon wrote specifically about how he wants the MRI done, and what he needs. He feels he needs more internal information to make a working plan. So I am going about getting in touch with my gastro doctors now, seeing who will write me the referral for this specific MRI. Hopefully that won't be too hard. Small tasks for now... find a pain doctor to do the next round of shots, secure an MRI for the New York doctor. I don't have to make any decisions today.

Wouldn't it be amazing if I never had to consider that surgery? If the pain just magically stayed away?
It's one heck of a scary surgery. I know too many things that can go wrong... many of them I've already seen with my own eyes- things going wrong in other people, never mind with myself. Many of the women I was staying with at the Mayo clinic Jewish house were victims of botched surgeries that never recovered fully. I've seen too much. It's terrifying.

I have heard also, though, that these steroid shots are not necessarily sustainable. The first time they work great, the second time less effective, and for a lesser time period, and the next time no effect. Everyone is different, and I can take other people's reports with a grain of salt, but I have to be mentally ready for anything.

But taking stock of what went on with the US trip... I have options now I didn't have before. I have tests to do to analyze the problems, I have pain shots that are presently working, and I have a surgeon not afraid to take on my case. These things are more than what I had before I left.

Oh, one more piece of the puzzle is that with the abdominal pain lessened (not completely gone, but livable), I am feeling the pain in my hip(s) more because I can challenge them now. I know both hips are full of osteo arthritis, and are basically bone-on-bone. My orthopedist doesn't want to do a hip replacement in my left side because of the problems related to the skin graft. The hip replacement needs muscle and fascia to heal properly and incorporate tissue to the joint. I don't have skin or fascia there by my hip, and the muscle is damaged. It would be very crippling to not have a hip replacement down the line when I'm going to really need it. If I went through with this surgery in New York, that problem would be solved, I spoke about it with the surgeon, and he said the area would be able to receive a prosthetic and heal well. Another large consideration.

But retracting my large, intense considerations and re-creating my smaller, more manageable world, school starts soon, and we have a BarMitzvah to pull together for Azriel! Got my work cut out for me (as does Azriel!). Then, Rosh Hashana, the holiest part of the year... lots of big feelings and big spiritual considerations coming around the corner.

Last year at Rosh Hashana I was suffering terribly, only able to be in bed. I got to the synagogue once, in the wheelchair. I stayed in bed practically the whole month of high holy days. I could barely move. It was a very depressing time. Please G-d this is shaping up very differently.

I am so, so full of gratitude for this trip I just had and everything that came out of it. And I'm glad to be home...with options. May I never see the depths of that depression I had, ever again. I want to make up for lost time with the kids & Robert now... I want to go places, walk a lot, hike a bit, be IN LIFE! It's been a whole year of sitting on the sidelines.

But one thing at a time. The beach today was awesome. I can shop with Shifra for a dress for Azriel's BarMitzvah. I can take the kids around, I can cook... I can be me. I may even try to play horn again soon... :)