Thursday, December 14, 2017

Hard times, hard times. Chanukah 2017

*Coming to you from Be'er Sheva Israel on the third night of chanukah*

I got the results of the MRI.
From the technician who was reding it, it looks like fibroids in my uterus are the problem. Nothing else stood out, except ovarian cysts, which I knew about. I'm going to see Dr. Mashiach on Monday, and we'll see what he suggests as treatment.
It's hard for me to believe that so much heavy pain is from fibroids. I mean, a lot of women have fibroids, it's fairly common. But I am in so much pain I can barely function. And why would this start suddenly three months ago? I did some reading on the internet, and I do see many women have heavy pain with fibroids, but somehow I feel like something worse is going on.

I have taken care of the ulcers and the duodenitis, and I went off the Topamax migraine medicine. But the pain persists. Originally I thought that going off the Topamax did help to reduce the pain a bit, but I realized, when I got back to Israel from my NY trip, that I was in less pain in New York because I was sitting shiva for my father. I wasn't making food, and I wasn't serving people. The opposite, I was mostly sitting around, and people were serving me. When I can rest, the pain is less. As soon as I got back home and got back into my regular life, all the pain came back in all it's glory.

I haven't decided yet if I'll go back on the Topamax.... I'm waiting to see what my migraine situation is. Today might be the first one; I feel one in my right eye ramping up. Let's see if Excedrin can stop it.

I gotta say, I still feel like we're missing something. The whole center of my body hurts. And even when I'm resting, when the pain lessens, it's a strange feeling that things are just wrong, I can't describe it. It feels like something is dying inside me.
I'll write again after my appointment with Dr. Mashiach.

In the meantime I made an appointment for next week to see my pain specialist (Dr. Z). I haven't seen him since I went off the Fentanyl almost three years ago. But if I have to go on living this way, I need pain medicine. It's just too much pain for too damn long. I'm suffering so much, and opting out of so many things in my children's lives, it's just too depressing.
It's not going to be Fentanyl, but I'm sure there are other options. The Percocet doesn't really help, and it makes me nauseous.

I saw my othopedic oncologist last week in Ichilov hospital. It was my bi-yearly follow-up for the PVNS. I left with more referrals for MRI's- for my thigh joint and my famously swollen and painful knee. We need to check if PVNS is in the knee now. So I have to set up those MRI's and go back to the orthopedic oncologist in 6 weeks with results.

That's the news... here's the weather...

66 degrees during the days, light rain around and about. Cold at nights....

No, that's not what I meant...

I meant emotionally.
I'm really not doing well.
My Dad died three weeks ago, and I'm in constant pain physically.
I have to keep living, I have to keep being in the world, I don't want to die, but I don't want to live this way. (just grabbed a tissue). I think about starting some sort of healing through Chinese medicine; I did a little reaching out and have a recommendation. I haven't called yet.

My life force is gray. It doesn't shine anymore. I have so much in me that wants to shine, but I'm in constant pain. I'm terrified that this is my normal now. I thought the pain I had before this was my normal, and I made my peace with it. But this, this is not normal, and I have no more peace to make with it.

It's not a good place in life for me. Let's hope for a working treatment plan on Monday. Let's hope for a pain-free Sarah. I don't even remember what that feels like. I honestly do not know my life without pain since I had NF.

And today I think is the first real migraine since going off the Topamax. It's coming on strong now.

May this holiday of light bring light to everyone, and may I be able to bring you all light very soon.

Sunday, December 3, 2017

my heart hurts- my abdomen hurts.

I got the suitcases unpacked, and am trying to get over my jetlag. I am so overwhelmed with everything from the past two weeks since my father died. I am still kind of shocked, but I'm getting more used to it I guess. I feel that deep, deep saddness that I know well from when my mother died... except now I'm "orphaned". We had an "open house" here for two evenings, in which people-- friends from my community-- came over to give me condolence. I had already sat shiva for Dad, but in New York, without my people around me. The open house was Robert's idea, and it was a really good one. I got to tell things from my perspective, and talk about my feelings and experiences. Our shiva in New York was full, robust I'd even say, but I didn't know 95% of the people who came, they were all Peter's friends from Manhattan (who all seem to be wonderful people). So holding this open house was good for me, thank you to everyone who came.

I was supposed to see professor Mashiach today, but the secretary called and cancelled. She said he has too many procedures scheduled for today and cannot see me. This secretary knows I'm in pain, and have waited for this appointent for a month. She couldn't even offer me a new date yet. I have an MRI scheduled for Tuesday, so at least we'll have that, but I don't have an appointment with the doctor who I think I should be going to.

This is just going on and on.

I did go off the migraine medicine (Topamax) completely. Interestingly, I ramped *up* on the dosage last summer when I was in New York, and now I ramped *down* from it in the same place. I've been off of it for a little over a week. The interesting thing is that the pain DOES seem to be less. It hasn't gone away, not by a long shot, but it did go down. So now I am left with more question marks than answers. But the good news is, as of yet (it's only been a week), I haven't had a migraine. I know they will come back, though. I can pray some magic was done by being on the Topamax and I'll never get the migraines again, but I have the feeling that the other shoe will drop, it's just a matter of time.

So today marks two weeks since my father died. I am still in a sort of shock about that, and so deeply, deeply, saddened. I loved him so much. So, so much. My heart is aching, and the tears just keep flowing.


Wednesday I'm supposed to go to Ichilov hospital (in Tel Aviv) to have a follow-up for my PVNS, and to see if I have it in my knee- the one that is constantly swollen and painful. (I'll need an MRI for that, too.)

I have to voice this here: I am worried that I may have cancer of some sort. I hope to G-d I'm wrong. But in the meantime there is no diagnosis and obviously no treatment plan, and I am living my days at much less than half capacity because of the pain.

When my brother said, about sitting shiva, "I'm glad we only have to do this twice".... the thought went through my head "I'm next".
I hope I'm wrong.
But I just have this feeling that I'm dying of something which is as of yet hidden.
I hope I'm wrong.

Maybe, like Robert thinks, the more time the Topamax has to get totally out of my system, the better the pain will get. Intuitively I don't think so. I think somehow the Topomax did have the side effect for me of abdominal pain, witnessed by lessening of pain when I went off of it. But it's been over a week, and the pain isn't going down any more than it did from the first few days. Something is very wrong inside me. I hope the MRI can help direct us. And I hope Hashem leads me to the doctor who is wise and intuitive enough to help figure it out.

Wednesday, November 22, 2017

My father passed away.

It was terribly sudden. My brother Peter called me from New York at 11:30 PM Israel time. That is not a normal time to get a call, I knew something was wrong. It was between the time that Peter was telling me that Dad suddenly fell unconscious, has no pulse, is not breathing, but the ambulance hadn't come yet. This is what he was telling me on the phone. Shock. Peter said he was just talking to him seconds beforehand. He was fine. Then he wasn't. It was quick. Probably a massive stroke. There was no chance of resuscitation. He was 87 years old. He is survived by his sister, 9 years older than him.

I flew to New York the next night, on heavy pain killers and in business class. I arrived at my parent's house at 7:00 am, and the funeral was at 1pm the same day. Thankfully Robert flew with me, but unfortunately he flew economy class, and also unfortunately he caught a nasty flu. We're not in great shape, but at least we're together. I'm so grateful for that.

I'm sitting shiva at my parent's house. It is so strange without my father here. I miss him terribly.
I'd like to share with you my eulogy, like I did after my mother passed away 17 months ago. Here it is:


Honestly I really can’t believe he’s gone. I’m trying to write a eulogy for a man, for my father, who is still quite alive for me.
He always has been so very alive. My father was for me my sense of humor, my joy of life, my unconditional love. We very much had what might be a typical father/daughter relationship. We were very close, and we seemed to always understand each other. He was a very, very, special, gentle soul.
It seemed to me that he always had time for me. He read me bedtime stories every single night for as many nights; as many years as I wanted them. Even if it was the same one over and over again, he had the patience to repeat them. He worked long days, commuted long hours to and from work, and undoubtedly wanted to relax at night. But he always had time and energy to read me bedtime stories. My entire life was made so rich because of that time he had for me.
He was such an interesting and complex man. His intelligence was undisputed with his research, his PhD thesis, his famous patents, and his ability to discuss a wide variety of scientific subjects anywhere, anytime, with anyone.
But there were some things that did not extend over the complete horizon of intelligence… but nonetheless were completely ubiquitous and lovable about Phil Kashin, “the man, the myth.” There was the ever present stapled and duct-taped slippers, the seemingly never ending supply of taped and slightly crooked drug store glasses, the track suit that he wore every day that seemed to always be 30 years old. ...And if we’re on the subject of duct tape, I seem to remember it holding certain parts of our family cars together, as well. But don’t get me wrong, Phil Kashin was really a great engineer-- he really could fix things-- like almost anything you gave him to fix. There was a mantra while we were growing up- that was “Daddy fit it”. He fixed toilets, electrical issues, car motors, our bicycles.  He had a complete work bench in the basement with every sort of tool necessary, and a few unnecessary as well. I watched him use a wood vise, and every other sort of tool imaginable, and that was how I learned not to be afraid to fix things while I was living on my own. I still have with me in Israel the handy hammer and screwdriver set he bought me when I moved into my first apartment by myself in Boston.
Like most people of his generation, he was influenced by the great depression. You must turn off every light when you leave a room, you must test a battery before throwing it away, and you must save and fix anything that is fixable… in HIS opinion.
Spiritually he would say he’s agnostic; that he doesn’t believe in G-d. But he was one of the most spiritual people I ever knew. He thought very deeply about spirituality and the meaning of life. He didn’t mean to, but he gave me a strong sense of spiritual purpose and connection to G-d, even if it was different than the connection he sought and perhaps never found. But I believe he was always looking for a connection. He was always asking me questions- challenging me about my choice of becoming religious. It was within those challenges that he was still seeking his own answers. But like so many people of his generation who saw the Holocaust happen right before their eyes, the answers would never satisfy him.
My father; he danced around the living room with me when I was young, he sang Yiddish songs to me, we joked around together constantly, he taught me how to ride a bike. He picked me up on his shoulders and gave me rides around the house….. He was a free spirit tied to a somehow hurt soul.
But he & I had the key to free each other’s spirits.
I pray that his soul is no longer hurting; it is now in the world of Truth, with Mom, which is the only place he’s really wanted to be for the past 17 months.

Tuesday, November 7, 2017

Surgeon: "what? Are you crazy?"

Like I said in my last blog, this one isn't going down without a fight. And it's going to choose when.

The meeting with the surgeon yesterday left me bawling in the hallway afterward.
He examined me, he examined the CT scan films closely, and declared confidently that everything is in it's rightful place, exactly where he put it 8 years ago. The mesh is fine, all the pins/clips are holding up fine. "So where is all this pain coming from?!" He couldn't answer that question. He suggested I turn to a pain clinic for help. I asked if we could do an exploratory surgery, I am sure something is going on and maybe it can only be seen from the inside. He then said "?מה, השתגעת" ("what, are you crazy?"). I said, yes, I am going crazy from this pain, I am about to jump out a window. I am completely unable to live my normal life, I can't be on my feet for more than five minutes without being in searing pain, so yes, I am a little crazy at this point with you telling me there is nothing wrong. He said he would never do a surgery without good reason, and especially on me, with my history of infection. He's right. Of course he's right. But Oh My G-d, that is NOT what I wanted to hear. Walking out of his office with no plan was not one of my plans.

So I got to a bench in the hallway of this very posh office building and cried while Robert curled his arms around me, soothed my heaving, sobbing shoulders. No words could be said.

The office tower was part of an upscale mall in Ramat Aviv (a part of Tel Aviv). The kind of mall where every store you pass you say "really? People buy that stuff?", and everything is 10 times overpriced. (I felt so Bourgeois.)

Robert was sure I'd just want to go home. I never have much of an appetite these days anyway, and I was so depressed. But surprisingly I said I wanted to stop for lunch at McDonald's. Now know this- Never in my life, not the 23 years I've been in Israel with Kosher McDonald's around, have I ever desired that food. I've been the one who will go if the family wants, but not get anything. I never wanted it. NEVER. And now? With my digestion issues and pain and everything going on? I don't understand it at all, but I wanted McDonald's. There were some beautiful coffee shops around, but I told Robert I wanted old Micky D's. There was one in that mall. I had no idea why I would want that, I haven't even been eating red meat for months. But we now know why.

As we were ordering from the new-fangled order machines, there was a very pregnant woman and her young daughter, also speaking English, ordering at the machine standing next to us. We were trying to navigate this system which was all new to us, and the woman next to us was saying it's totally different than in America, too. So we started up conversation! We got our orders, and decided to sit together, we were enjoying each other.

Turns out she just moved to Israel with her family recently, a few months ago, and was brought up in Locust Valley, just a few miles away from where I was brought up on Long Island. But that was just the beginning of our connecting.

There is magic in Israel. I often forget that. I used to feel it a lot, like all the time, when I first started living here. It's a "newby" feeling, the magic. It wears off, we get used to it. It happens all the time; meeting people who become highly significant in your life, connections to other people who are highly significant. Marriages and babies happen this way, and lives get saved regularly this way. It's a way of life here, you see it all the time. This land is a magical place, the Hand of G-d is almost palpable when you live here, you can almost feel it on your back as you move. But after so many years of living here, sometimes we stop feeling it, or stop noticing it. So yesterday, at this table in the swanky mall, at McDonalds, with this woman and her daughter and Robert and the melange of Kosher but questionably nutritious food scattered about? The hand of G-d was there, too. I'm quite sure of it.

There is a long, involved story here, and I may need to cut it into two blogs, but I'll try not to lose you in the explanation. It's all about when one door closes, another opens. I'm going to call my new friend from McDonald's "R". Oh, and she's pregnant with twins, and apparently that's quite a miracle because every obgyn in the continental United States told her there is no chance of her ever getting pregnant again. The daughter she has (who was with us yesterday, she's 6) was pure luck, count her blessings, and cut your losses. She had a uterine disease called Adenomyosis. This was responsible for her fertility problems, and nobody could help her.

Nobody until she got to this certain Obgyn here in Israel named Mashiach. (that really is his name). She asked if I had heard of him (knowing I was a doula, she thought maybe I'd heard of him). Yes, I knew of him, but not from my doula world, but rather from my personal medical world. He had preformed a surgery on me during my hernia mesh surgery 8 years ago, the one we just were checking about just a half hour before that conversation. During that surgery I needed a gynecological procedure done, and my surgeon recommended to hire this Dr. Mashiach, so I did, and he came in to do his part for like 20 minutes, and that was that. I wasn't ever really a patient of his, never did any follow-up with him at all for that. But when I told R about my pain now, and what I am experiencing, also regarding my menstrual cycles, and the large fibroid tumor that was also found on the recent CT scan, and my history including a c-section, she said emphatically "go see Dr. Mashiach. He's the one who knows about this disease." He's the one who got her to the point of this pregnancy she is holding, that nobody else could help her body accomplish.

For a while now it has been kind of an assumption that I have another uterine disease called Endometriosis. It's similar but different to the other one, Adenomyosis. This new friend, R, said she used to have constant abdominal pain like mine, that changed with position, like mine does. This is a positive lead for me. So I called Dr. Mashiach, and of course he has no openings in his schedule for another month. The secretary said she'd call if something earlier came up. I don't know if Rav Fisher can help us with this particular doctor, we'll call him to find out.

That's one avenue that needs to be explored.

The other avenue is my migraine medicine. Topomax. It's a scary avenue because it means my migraines will come back. There is a rare but well documented side-effect of this medicine that is can cause abdominal pain. How strong and what sort isn't documented, but I have to see if going off the Topomax will take away the pain. I don't want to go off it, I LIKE not having migraines. I usually get them at the frequency of one or two a week. It will be more with withdrawal of the medicine, and there isn't much I can take to get rid of the headaches. I am perhaps inordinately scared to go off it at this point. I feel I am maxed out on pain, and adding migraines to it might just make me go insane. I am not sure I can handle it. Of course, ideally, if the Topomax is causing the abdominal pain, it will magically go away when I go off, and we will all live happily ever after. 
(Yeah and then monkeys will fly out...........)

I have done many, MANY medicine withdrawals. Most of them in uncontrolled environments, at home, but under doctor supervision. The most famous was the Fentanyl, of course. I was a mess for 10 months, but I did it. More like a year actually. I now doubt my inner and outer strength to endure this withdrawal. I just don't know if I can handle it. I have already endured more than two months of HARD pain in my body, I am not starting out on a good foot. Now to willingly add migraines? Shit.

Part of me just wants to go to the Mayo clinic in Minnesota and check in for a complete evaluation, and not leave until I have answers. But as Robert said, we have to take care of the "low lying fruit" first- that being the Topomax, and I guess trying to get into the gynecologist earlier. GOD GIVE ME STRENGTH.
I'm losing more and more, emotionally as well as physically, as the days- and the pain- go on.

Sarah Rachel bat Tova

Friday, October 27, 2017

Update: More Complications

This is one of the lowest times in my medical history. Two months now... Two months of pain with no improvement, and it seems to be getting worse. I can barely stand for any length of time without tremendous general pain in my abdomen.

I'll cut to the updates:

The gastro doctor who said he'd take on my case- Professor Fich:

He did get back to me, thankfully. He said he looked over my CT (CAT scan), and said that he feels the original evaluation of ulcerative duodenitis is correct. Together with that, HOWEVER, he feels he sees something amiss regarding my stomach wall surgeries. He couldn't be specific, he feels it's the job of a surgeon to evaluate. He saw something not right with the mesh/clips/pins holding things together in my belly where the NF left it's big hole. Where we all call "Gapey".

One of the problems with that is that he never saw my belly before, so he doesn't know what it normally looks like. In a responding email, we asked him if he would be willing to compare this present CT with an earlier one, because he has access to all the CT's in Soroka. He declined to spend more time on it, saying I should go see a surgeon. OK.

I feel that could totally be right, even without him doing a comparison study.
This summer, while dealing with the staph infection from hell (the one that lasted what... 6 months? on my skin graft? --it's gone now- that's another story- I used honey on it!), I felt that the whole mesh inside me was inflamed. I felt all those clips, I felt the entire mesh. It was bugging me all summer. (can you imagine feeling a hernia mesh inside you?) I remember telling Robert that I wish I could have it removed. One of the clips was actually protruding a bit, I thought it was going to make it's way out of the skin graft itself. I kept a bandaid on it, it calmed down. But I wouldn't be surprised if there is some sort of grand inflammation, or adhesions or all of the above, or some option I don't yet know about, is happening in there. I feel a lot of pressure there. What I know is that the pain is mechanical in nature. What I mean is, when I lie down, it goes away. When I start to sit up, it starts to hurt. When I stand up it hurts the most. The more I stand up, the more it hurts. To the point of, if I stand up for 10 minutes or more I am out-of-my-mind with pain. I did that the other day. I decided that I was going to do one task from start to finish. I was going to put up a pot of soup. It's one of the only things I can eat- vegetable soup. I took out the vegetables, washed them, started peeling, chopping, putting in pot, simmering, etc. By the time I sat down, I was in SO MUCH PAIN I COULDN'T EVEN TALK. My daughter was getting an Arabic lesson, and her teacher was at the table. I sat down at the table, their lesson was over. I could not talk. The teacher looked at me, a frightened look in his eye, perhaps matching the look he saw in my eye. He said "breathe"....

On the phone last night with Dorit my Homeopath, she (also a physiotherapist herself) asked me about other positions, testing out the adhesions theory. She suggested hands-and-knees. I did that in bed, and BAM- within about half a minute, I could barely breathe again because of the pain. Yup, her theory was proven. We're not exactly sure what the theory means, but there is some sort of adhesions, or blood vessels that are getting smushed and not letting blood flow properly in certain positions.

It may have all started with that stubborn staph infection on the graft. I knew it was going inside, I felt it. It was only visible from the outside, but it kept oozing, for months. That means it's coming from the inside. I kept trying to tell my doctor, then the ER. They didn't even swab it. Not until it was really far along. When will they LISTEN to me?

So, now I need a surgical consult.
The only surgeon who I would let touch me near that mesh is the one who put the mesh in, eight years ago, Dr. Amir Szold in Tel Aviv. He is a very talented laproscopic surgeon who's name came to us, of course, by Rav Benjamin Fisher at the time. Dr. Szold, however, doesn't have an opening in his schedule until the beginning of December. Weh-weh. Robert called Rav Fisher back. Explained the whole story. Rav Fisher told him that Dr. Szold is away for this week (how does he know these things?), but that Robert should try to call Rav Fisher next Wed or Thursday, and he will try to get us an urgent appointment. Let's hope that works out. In the meantime I'm going to try to get an MRI so we have that for better analysis of the situation. That should keep me busy, just trying to get that.

Emotionally I'm a mess, but that's to be expected. I'm crying every day from sheer frustration. I've really lost so much. Remember when I was just one or two months after NF and I was doing 20 hour births with women? OK, I know that was also extreme, and not always in my best interest, but there was something badass about that, right? Well, maybe not. I mean, I was still in bandages, for Gd's sake. But pain, pain is a thief. It has robbed me these passed two months of so much. And I know that there is more to come. I know that this one is not going down without a fight. This is going to be a tough one. There will be surgery, and not simple surgery, I'm almost sure.

The worst part is that I am letting it rob me of my faith. I am angry at Gd. I mean, why is He picking on me so much? Last Friday night I started talking about Dr Kevorkian... poor Robert had to sweep up the pieces of that mess. Thank Gd for Robert.  I know questioning my faith is really not a good path to go down, for so many reasons. So I try not to. But com'mon... TEN YEARS since I had NF. It's been one thing after another. Ten years ago the doctors were optimistic that I will rehabilitate well after NF; I was young, strong, healthy.
Last night on the phone with Dorit, my homeopath (and long-time medical friend) I asked her how will I rehabilitate after this? So much time in bed, I probably will need surgery, I'm losing so much strength. She said "you're young". But I'm ten years older, and not as healthy anymore. I'm going to have to really work at rehab this time, it won't come easily. I already feel so weak and tired, and drained.

I wanted so much more from life. I still dream of my careers, of who I used to be.
(and I have nightmares of puss coming out of my belly, alone in a strange room, reaching for a water bottle with a parched mouth only to find the bottle empty... terrible nightmares.)

But I have to remember to be happy with what I have. I have what many people will never have... an amazing husband, 4 incredible beautiful children, a home in eretz Yisrael, and incredible friends and loving family all over the world. Thank you all for being my people. Your words are hugs to me.