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.

Inventory: Emotional and medical

I am reading a very wonderful, very powerful book at the moment called "My grandfather's blessings" by Rachel Naomi Remen. She is a wonderful writer, also famous for her "Kitchen table Wisdom" book. She is a psychiatrist who has been through many career changes, currently working in hospice, in California. I am receiving so many blessings from this book, it's helping me with my mourning. Rachel Remen says that if it was up to her, grief would be taught in kindergarten right up there with sharing toys.

I wish I had her as my shrink!

We have no guidance in our regular lives to navigate grief. It comes upon us by surprise, and we are as if left in a deep, dark, cold forest with no tools how to get back home. That's where I've been the past two months. In deep, dark grief. And it is up there with the hardest things I've ever had to do in my life. For the past few days, though, I have been feeling the fog lifting at times. I have had some times of feeling... a little better. A far cry from "well", but I can see times that the grief can lift, temporarily. If I only talk about it with a friend, though, the tears are as close to the surface as they have been over these few months.

I thought grieving for losing my health, careers, personal body image because of the tremendous wound damage from NF, losing lots of control over what happens in the house because I am sick so much, was a lot to grieve in the past nine years. While that's all true, since my mother passed away in June, and Sabrina in December, and especially because of all the details involved in Sabrina's passing, it knocked me down HARD. One of those "details" is the loss of not adopting Sabrina's daughter, Tessa. I'm talking about monumental details of that level. It's all SO. MUCH. I have been overloaded with sadness. I am still there, and I hope and pray the right kind of support will come soon.

Medically:

I need a secretary. It is so hard for me to follow-up on all the paperwork and appointment making and calling. If I want my throat problem fixed, I have to do two tests; one is a swallow test where you swallow liquids (Barium) from thin to thick, and the swallowing is recorded by a special type of x-ray. I also need a neck CT scan. Haven't scheduled either of those yet. Oh, and also voice coaching from the hospital speech pathologist because the upper part of my voice is shot since this whole throat fiasco started.

Then yesterday I was in Tel Aviv at the orthopedist. He looked at my last scan, but it isn't the type he needs, so I have to schedule an MRA for my right leg. Looking at the scan I had he commented that my left hip looks terrible, filled with fluid. He asked me what the oncologist says about that, I told him they said it was fine. No other comments. Didn't boost my security, though, that we are only looking at the possibility of one hip replacement... could be TWO. But I can't go there. I can't deal with that information any time soon. All I can do is try to make phone calls in morning times to make appointments and send faxes. These days, that's a lot for me.

But I did play horn the other day. Felt awful, sounded even worse I'm sure, but I did it. May do a shared recital with a friend in a year's time for my 50th birthday... we'll see...
And I bought myself a new (2nd hand) bike, and went riding with Dovie.

It's not all gloom and doom. But it certainly ain't paradise. I'd even settle for normal.

Mourning

The opening paragraph of my book is planned to look something like this:

I really wanted that baby. I wanted to get pregnant and give birth again. I felt that there was a soul flying around in my universe, needing to land in my family. Being a doula, I needed another chance at getting birth right, after having had a c-section with my last baby. I was looking forward to a positive birth experience that would repair the last one.
In time, the very essence of the words “repair” and “birth” would take on entirely new interpretations. I planned, I prayed for what I wanted. What I now realize is that I did receive repair, and I did receive birth, but only my Creator could teach me those concepts in the way they were tailor made, and intended for me.
I had a plan. As far as I was concerned, it was 100% foolproof. I had no reason, in my small scope of living, to think that things would turn out differently..... 

That's the opening concept... that I wanted another baby. That was the reason I had the hernia surgery.
Along with mourning all I lost to NF after the hernia surgery, I had to mourn not having that other baby. There was no way in the world I could physically or emotionally bring another baby into my family at that point. I know, I have four *amazing* children, and they are true blessings and each one an incredible soul. But mourning what you didn't have doesn't cancel out what you *do* have. Kind of like having a healthy baby after a cesarean section when you had planned a home birth. Yes, I was *of course* happy to have Azriel, and that he was healthy after the crazy birth we had to go through, but I had to mourn the home birth I hoped for. So, too, I talked in therapy about that baby I had prayed for, what it meant to me, how I can move on anyway, and I learned to put those feelings safely away.

What I didn't know is that there was another level of mourning waiting for me regarding that fifth child. It seems I am doing that now. I was ready and willing to adopt Tessa. I loved her mother, who just passed away. I was taking care of Tessa a lot the weeks before Sabrina passed away. It was hard for me, I was giving my all, and exhausting every emotional and physical resource to do it. I was also trying to take care of Sabrina, driving her to Tel Aviv for her appointments, visiting, errands. But I had it in my mind that I was ready to adopt Tessa if things turned out that way. Sabrina had chosen someone else to adopt Tessa, and that me and my family would be "back-ups" if something with the first choice arrangement didn't work out. During those last few weeks of Sabrina's life, I really got to know (and deeply admire) the person who Sabrina chose. We had some very deep heart-to-heart talks near the end, of course. I had to know where she stands, and she had to know where I stand.

It's just that I thought I stood in a different place. I assumed my kids did, too.
Turns out I really couldn't give Tessa everything she needed, while giving my own children what they need as well.

Turns out that what we learn from our kids is *always* our tikun. Once again, they taught me what it means to mother them.

And thank Gd Tessa's soon-to-be adoptive mother is able to make the difficult changes her life will need to take Tessa into her home, and they have a very wonderful relationship. I will still be in Tessa's life, of course. She'll always know where I am and that my door is always open to her. I'll be a loving auntie.

But right now my heart hurts. I am again mourning. Honestly, it's been so tough. Mourning Mom has been more real-time with my father here. And of course Sabrina's passing is so fresh. Then there is also this other little person who, for a few weeks, I thought I'd be bringing up... well I'm mourning the plan of that. It's so interesting how children show us exactly what they need. All we have to do is listen. They are a little piece of Gd that way, you know?

"Mother these souls. The ones I've already given you. 

I heard your prayers, I saved your life. 

I've cradled you in my palm."

-God

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ 

Thank Gd my father is indeed recovering from the pneumonia. He is starting to get a little stronger as you can see in this picture from our walk outside today.

Tomorrow is his last full day in Israel... Thursday is their flight home. I'll miss him, and I'll also look forward to quiet. I really, really need quiet more than anything these days. Quiet to rest, to write my book, to mourn, to heal (will I ever heal?).
One important concept I am learning to incorporate is that mourning is not depression, that there is a very clear distinction. That is somehow comforting, right?

Too Much.

I haven't been able to write because of life getting really heavy and scary of late. Not with my health, but that of my friend Sabrina, who's daughter I often help to take care of. Sabrina is very, very sick, and her daughter (6 years old) needs taking care-of, full-time by someone else. We pray it's a temporary decline in Sabrina's health, but there is no way to know until you know. That "someone else" to take care of Tessa has been me. I have also been trying to take care of Sabrina and get her what she needs, she is living alone, and I am very worried about her. This all weighs very, very heavily on my heart, as well as  the hearts of my kids. It's been a helluva week.

My kids are going through a very hard time about it, too. Thank Gd they are very expressive and verbal, and I have raised them to speak whatever they need to say to me, no matter how they perceive it may make me feel.

They feel that because I have been sick so much in the past 9 years (practically speaking all of Azriel's memory, and most of Shifra's life), they don't get me for themselves as much as *they* need; taking on another child isn't OK with them. They told me (separately, in different words) that they never know when I will be sick or unable to take care of them, and they feel insecure in my consistency. Guess what? They are right. I know you are all nodding your heads.

In the meantime, neither Sabrina or Tessa has other family. We are their people. (not only my family, there is another very loving family also helping take care of Tessa). Sabrina needs help and she is presently living alone in her apartment. I will do what I can to help her get the help she needs.

But I am fraying at the edges emotionally. 

It's all been way too heavy for me, and I've been paying that price. There is a reason I am not working as a doula anymore. I don't have consistency and strength to give. I wish, more than anything in the entire world, that I DID.

In the meantime, my father and his aide are coming HERE on Wednesday from New York!!!!!!!!!!
They are staying for three weeks. It's very exciting!!!! I pray that his health and strength will hold up, and we can have some quality family time. I'm nervous about how he'll do on the flight, but thankfully his lovely aide, Nina, will be by his side the whole time. She was my mother's aide, and after mom passed away in late June, Nina decided to stay on and help my father. We are so grateful for her. So now I have to clean the two rooms downstairs that they will be sleeping in...

My CT scan was inconclusive for major problems in my hurting thigh joint. It pointed out a few lesser problems (liver cyst, ovarian cyst, structural deterioration in my hips and back bones at the bottom), but we didn't get a definitive answer about the thigh joint pain and occasional fever.

My doctor agreed with me that we should be looking at the diagnosis of endometriosis.

Endometriosis is very painful.

Although my symptoms point to it, is is clinically undiagnosable without laproscopic surgery, (which I plan to avoid). My doctor told me about a new endometriosis clinic in a hospital in Tel Aviv where I have an appointment to go to in January. They opened a whole wing of a hospital for it. Thankfully my health plan already OK'd payment for it, which was not a given, because I don't have a solid diagnosis in this case. My doctor (I'm talking about my GP here) told me they have ways of lasering the wayward endometrium, as well as other new techniques to help with the disease without operating. In my case there is a lot of scar tissue adhesions in the same area, so it may be complicated. As long as I am having this level of pain, and the fevers half the month. I need to try to get help. It seems like I always need to try to get help.

BTW, the endometriosis is connected to the NF like almost every health problem I have now. How? Well, the scar adhesions in there are mainly from NF, and endometriosis (uterine tissue growing abnormally outside the uterus) is attracted to scar adhesions. It hides under them. Also the appendicitis (may or may not be related to my immune system problems after NF), and another procedure I had to have years back because of the effects from the NF damage in my life. That procedure, in a very small percentage of women, can lead to endometriosis (we just found that out while searching the two words together... these are the things nobody tells you beforehand.) I would have never needed that particular surgery if the NF hadn't changed my life so drastically.

I keep hoping that I will be able to move on.

My health has been marked for a lifetime of problems. I now have fairly frequent chest pains, but my doctor says it doesn't seem cardiac. It doesn't make it hard for me to breathe, just, uncomfortable chest pain, like something heavy is on me. I, personally, think it's stress. I think I am so, so stressed out with what is going on with Sabrina and Tessa, and so worried, that I am taking it all inward. I have duly notified my doctor about it, and if it's still there in a few weeks (the chest pain) we'll do an x-ray.

I am definitely overwhelmed with life.

I'm not sleeping well. 

I am working to find balance.

On the bright side, my migraines are TONS better. I am on a new migraine medicine now for about six weeks, and haven't had a bad headache in about a month. I am supposed to take a bit higher dosage of the migraine medicine, but I am keeping it at a lower level for the time being, if it works, it's better for my liver and kidneys to keep to a lower dosage.

OK, I have to go. I have a deadline to meet in writing a story for a brand new magazine! It's a magazine for Jewish women who are dealing with chronic illness. Hmmmmm, we know anyone like that?

With my father coming on Wednesday, no telling when you'll hear from me again. But I'd love to hear from you! Leave me a message on the blog. Thank you! XOXOXO

taken last week at Dov's yeshiva in BatYam (near Tel Aviv)
Ya'akov couldn't join us, unfortunately.