Thursday, November 29, 2018

Three MRI's and a funeral

(...oh, and a memorial gathering at my house for my dear friend Sabrina, may her memory be blessed. But that made the title too long)

It has been a crazy week.

One MRI (brain) was at night after a funeral I attended of a friend and wonderful member of our community. She was only 67... cancer is evil. She was a dynamic, friendly outgoing woman who I was quite friendly with, and she also taught my youngest son English on a US level when he was in second grade (Israeli schools don't teach English until 4th grade). Her nieces and nephews came in from the US for her funeral, that's how special she was.

Funerals take a lot out of me, but are so vitally important to the soul. That of the departed as well as that of the people who cared about the departed. All-n-all, though, yeah. I'd rather attend a birth.

The MRI that night was a brain one. Of all the MIR's I've had (and that's a LOT), I never had a brain MRI. I've had brain CT's when my migraines got bad, or switching neurologists, but not an MRI. This one was for the pain doctor in Ichilov hospital who is trying to find a diagnosis for my abdominal pain crisis that happened last year, which [mostly] went away when I got the steroid shots. He said redoing the shots is fine, he can do that any time I need. But he feels we are missing a diagnosis. I'm not sure. We'll see. He ordered brain, spine and neck MRI's, and those are all done now.

The brain MRI is really hard because the noise is at your head. I always had abdominal and hip/thigh MRI's, and *those* are also loud, but the brain one is, well, at your HEAD. The ear phones they give you weren't enough for me. Too much jack-hammering, alien abduction, car alarm and machine gun sounds in my head. Not good for the PTSD. Not to mention the cage over my face... if I opened my eyes I immediately got claustrophobic. Glad it's over. No results yet.

The Ichilov pain doctor also ordered a nasty looking test called EMG/NCS of upper AND lower extremities. That test is not passive at all... electrodes and needles testing muscles-- FULL BODY. I'm not enthusiastic to do that. But I guess I will. Definitely bringing somebody with me for that day.

Then yesterday was very busy... it was Sabrina's (z"l) second year memorial. I was on my feet all day, literally. Only stopped when the actual ceremony started, in my house, that evening, with about 10 other people joining us. Then I sat a bit, but I was really wiped out. I spent important time at the cemetery (for my second day in a row) with Sabrina's daughter and her whole foster family, visiting her grave and cleaning it, being with everyone (especially Tessa, who I miss terribly, but is doing very well, thank G-d), standing, walking a lot. Then down town to get the memorial gathering foods together... along with a few errands I had to do (walked a lot then, too-- couldn't find close parking even with the handicapped parking tag). Food shopping (which I don't usually do, it's very taxing), coming home to prepare. I'm happy to do it, but it was quite a hard day. That's life.

We had a lot of sushi and beer because that was one of the things Sabrina and I did often- either go out for sushi and beer or order to her apartment sushi (and drink beer). I thought she'd smile on my decision. Made me happy. But you know, cleaning the kitchen, arranging everything, I was just non-stop on my feet. Every time I thought I could take a rest another thing popped into my mind to organize and prepare. Thank G-d everything turned out fine, and Sabrina's daughter had a wonderful time playing Barbies with Shifra. (my daughter, who's almost 16, had lots of fun too... this was *not* charity work to play Barbies with Tessa!! We heard their giggles and banter in the living room!)

By the time I cleaned up and got myself into bed, it was midnight. My legs were nearly numb, hips throbbing.

But I forgot to say something important, --but I want to ignore it-- but I can't...

Last night is the second time since I got the steroid shots that I felt that same abdominal pain return. The first time was Yom Kippur, in September, also when I was on my feet all day (and helped a mommy with a nursing newborn long into the night). Then it didn't come back until last night, at about 11pm while I was standing at the sink washing dishes... I felt it. It's like a demon feeling when it comes. I think I have to be careful about being on my feet too long. It goes away when I rest.
But I don't want to have to be careful, you know? 
But it's there, lurking. I guess it's a good idea to try to see if there's a diagnosis, but I'm not convinced there will be. And again- doing that nasty nerve test is involved. Weh.

But wait, not done yet-- I said three MRI's and a funeral, right?

So not only did I get to sleep over exhausted, in pain, and late last night (with thoughts of Sabrina & Tessa swimming around in my head), but I got up at 6:15 this morning to head to Jerusalem for my two MRI's that the New York surgeon wants to see in order to know if he can do the reconstruction or not. I've had the referral for these MRI's (abdomen & thigh- the whole area of NF's path of destruction) since August, and because of the  special directions the surgeon gave, no hospitals in Israel wanted/could do it for me. He wanted 1mm picture cuts the whole NF area (large area).

So when we got stuck in traffic on our way to Jerusalem this morning and I called the hospital to inform them, the secretary was snippy with me. She told me that I must be early (as if traffic is in my control) because the doctors/ technicians don't understand my MRI order.

Excuse me? You've had my referral in your hands for over a month... the HMO just told me *yesterday* that they will pay for it, so I didn't know if I'd be coming today, but the hospital had my referral for a long time, and sent me a date for the test. *Now* you're telling me that the directions from my New York doctor are complicated?

We got there, a bit late, then the guy who puts in the IV took a LONG time to get a good vein and set me up. (pet peeve- being a full-time patient makes your veins bad- must have EXPERT phlebotomists!!). Then comes the doctor and the technician. They're telling me about the MRI machine's capabilities, this is impossible, we can't do 1mm cuts, that's only done for brain MRI's and this area is so much bigger than a brain. I said maybe program the machine to do what it can do for a brain and aim it where we need? No, I don't know what I'm talking about (true, but sometimes not knowing things helps one think out-of-the-box), this is impossible. I told them of the other hospital that said they can absolutely do it, but only privately (mucho $). Then the technician tells me she spoke to that [private] hospital and they said they have the same machine (apparently standard all over Israel) and can't do it any differently than what they can do. That's not what they said to me, but I was stuck... the HMO already agreed to pay for it, this was my only shot. I was already gowned-up and feeling vulnerable, with an IV tube sticking out of my sleeve.

In the end it was the longest MRI I ever experienced (well it was two, actually)... well over an hour. One cool thing that I never had before was classical music piped into my ear phones! First Mozart, then Chopin (or Liszt?), then a Baroque period Bassoon concerto chamber orchestra and a harpsichord. My mind reminisced about my university days in Boston University, the orchestras I've played with, a typical day at Boston University for me, the apartments I lived in, the guys I dated during that time period. A trip down memory lane. :)

The doctor and technician were proud of themselves when they freed me from the tube-- they succeeded in doing 3mm cuts throughout. OK, dudes, thanks, but my doctor asked for 1mm cuts. Unless I go privately, though, I won't be getting that. I'll send this to New York and see what the surgeon says. If he says it's not good enough, I'll have to consider doing yet another one (two).
That would be much longer time in the tube not moving. I'd need a sleeping pill, honestly. It's not easy. The doctor in Jerusalem today told me it'd take three hours if it's possible for the machine at all. But I need the New York surgeon to be *absolutely sure* of what he may be getting into, and absolutely sure of his plan every step of the way. It's a very scary procedure, this reconstruction surgery. I don't know if I'll go through with it. If it all works out perfectly, it could be VERY promising for my abdominal pain issues and skin graft issues. But I know, and you know, that surgeries don't go perfectly, regularly. What I know I went through, and what I witnessed Sabrina suffer through her last year and a half because of surgeries gone wrong, and what I have seen on my NF support group, I know TOO MUCH. I've seen too much.

OK, I'll back up. I don't have to make that decision yet. I'll have a Skype conference with the New York surgeon after he receives the disk, and we'll be wiser.

Oh, I think I didn't tell you-- here's a good reason *not* to check email before you go to sleep. I did last night- on my exhausted night after Sabrina's memorial- checked my email quickly. What popped up? "On this day last year. See pictures of this day last year!" I think it's from Google+ or something. I clicked. The pictures were from the last day of sitting shiva for my dad, when my brothers and I, standing together, blew out the week-long yahrtziet candle while standing in the living room of my late parent's house (now sold). That's what I needed after Sabrina's memorial and such an intense day?
I sent the picture to my brothers, a reminder to them, too. (for their privacy I won't post it here)

That's how I fell asleep last night (with my new sleeping medicine, thank you, Dr. E!!)-- with thoughts of Sabrina z"l, Tessa; my dad's death, selling their pretty house where I grew up, the works.Then the MRI today and I'm BLOWN.

Good thing Shabbat is coming. I think I'm going to rest a lot.

It's good preparation for Chanukah next week! I've been taking these amazing Torah classes and learning some beautiful and mysterious things about Chanukah. The kids have their winter break from school/yeshiva. Oh wait- next week on Tuesday we have to travel three hours to Dov's yeshiva for parent's day, and drive back the same day, but taking Dov with us back home for his winter break. I think I'll be re-fueled by then. But vacation time-- all offspring home-- family doing things together-- it sounds great, but I'm so, so exhausted. And still dealing with pain and PTSD.
I have to get it together. Hashem, give me strength.

It'll all be OK. There is such goodness in the holiday of Chanukah, and such inherent strength built into it spiritually, And the kids love it. And it's over a week, together-- rare these days! It's all good. B'ezrat Hashem, with the help from the Maker of the Universe.

1 comment :

  1. Keep me in the loop next time. I qualify as a refrigerator magnet, like you, at this point, I've had so many MRIs. I've dealt with the snippettes before and learned how to prevent the problems that they tend to cause. Medical care advocacy is a science and an art.