You know... NF is so devastating. Still in the mud, a year and 10 months later.

Azriel is doing great! Baruch Hashem. No side effects, and he went to gan today. He came home and started jumping off the couch saying he's Spider Man [he's never even *seen* Spider-Man cartoons, but that doesn't matter when you're three], he's fine. It'd be great if we all could bounce back so quick!!!

Well, this week was just a bit too much for me. I could've predicted that. In fact, I did, but I didn't make a better plan. I am spending the day in bed with an upper respiratory thing. Ugh. Happens to me every time I push it too much. My immune system rebels. Understandably!

Oh, and BTW, today is my Hebrew birthday. :-) I wish I felt more celebratory, but I have until March 3rd, the Gregorian calendar date, to get into the spirit. Last year at this time I was in the hospital with cellulitis, so this is an improvement! Just a viral thing. But, ugh.

Yesterday was the meeting with Prof. Halperin, the orthopedic specialist that Prof. Gur (my plastic surgeon) recommended. It was at 6AM, and that was really hard. Rivka and I were out the door at 5AM to get there. Bless her heart!

I don't have a lot of energy to write many details now, I am in bed hoping to sleep soon, but I'll jot down "for the record" what I can.

After trying to enter the hospital through a plate glass door with no warning stickers on it, Rivka sadly received some bangs and bruises. It was a very unwelcome way to start the day, especially since it was 5:45 in the morning. I was not impressed with the door, or the EMT's who were standing just behind us on a smoking break. They completely watched the whole scene, never offering a word or assistance, and when I asked for ice, they raised their arms like I was speaking Swahili to them. Nice.

Anyway, after that rude awakening, things went smoother. We got to be seen by the doctor fairly quickly, and were out before 7am.

He basically said... "I dunno". One of the experts of the experts.
What we learned ('we' meaning Rivka & I) from this particular appointment is that the next step is to have the MRI read again by someone else. That is what this Prof. Halperin recommended. He couldn't tell enough information about the tumor based on looking at the image, and he humbly admitted to not being an MRI pro. He did an exam on gapey, and hip motion, and couldn't really make any recommendations personally until someone else (who he recommended) evaluates the MRI again.

What was more interesting, actually, were the last 5 minutes of the exam. At that time, Halperin's [very highly trained] sidekick was still with us, and Halperin had moved on to his next patient. I decided to ask this doctor to just please take a look at the part of the MRI where I had thought I saw the mass. I told him it is just probably because I don't understand what I am looking at, but if he could take a minute to look at it.... I told him that what I saw is a white mass *exactly* where I have pain, and it is in an entirely different place than the tumor that was discovered. He indulged me and took a look. Mind you, this mass/thing I saw on the MRI wasn't pointed out at all on the evaluation. So, when he looked at it, he was perplexed. He said it didn't seem to be connected to something, and it looks like "collection" of some sort (infectious, cyst, something). He examined me again on that spot on my body (thigh), and again, his pressing on it made me jump with pain and automatically go to grab his hand off of it. That is the hot spot; it's always (since the cellulitis) been the painful area. My hip joint hurts a lot, also, so there may actually be two things going on. But, the point is that he acknowledged there is something where I thought there was on the MRI. This doctor actually said that the other tumor might be a 'red-herring', and this is what we are looking for. He used that term; I thought that was interesting in the middle of an entirely Hebrew conversation.

It could be that the reader of the MRI (in Hadassa Hospital) was looking for something in the hip, found it, and didn't look further. The mass that I found myself was at the end of the disk, the last 10 pictures or so. Maybe he didn't get to the end of the pictures after he found "what he was looking for"? Maybe that hip tumor is a problem as well as the other one (thigh), together making my life difficult?

Anyway, we got more questions than answers yesterday, but the bottom line is that I'll call Prof. Giladi and update him, and ask his opinion about the recommended MRI reader. I also have an appointment on the 8th of March with the orthopedic oncologist, Prof. Meller, and I want to ask Giladi if the MRI should be re-evaluated before that appointment. Rivka helped me make a clear plan about what has gone on, and what to do next. She is soooo good for me with that. She is my doula. :-)

My trip back was way too long yesterday, and it was very negative for me. The trains are striking, so I was busing it. I made the decision to go back to Rivka's house (in Modi'in) after the appointment in the morning because I was so wiped out. I slept there until 2pm, then headed out. I got a bus from Modi'in at 3PM, and walked into my home at 7:15PM (it's supposed to be at most a 2 hour trip by bus, and just an hour and 15 minutes by car). It is crazy. There will be a better plan next time.

I wound up very despairing and depressed on the bus ride. It was too hard of a day to have perspective (and only 2 days after Azriel's surgery, don't forget). I went to thoughts that are very defeating; that I'll never have another day in my life pain free, that if you get seriously hurt enough it makes it's mark forever, and the body can never be set straight again. That I am going to be bounced from one doctor to the next with no answers, just more questions. And the worst part of it? The part where tears came while I was on that bus... is that each of these doctors' visits takes so much out of me. It leaves me unavailable as a mommy to my children. Ya'akov's birthday came & went and we haven't planned a party or gotten him a gift yet. I am out of touch with my kids recently, and I am always absorbed in tired an pain. Purim is coming around the corner, and I already asked Zimrah (nanny) to work with the kids with costumes. I just don't have the physical or emotional strength.

It effects every aspect of life. Robert is extra burdened, and so is our time together, and the quality of that time suffers because we are always both soooo tired. Like now, for instance, I am in bed, on a Friday, coughing deep bronchial coughs and feeling weak & ill, while Robert is giving lunch to the kids and making food for Shabbat. He'll be quite exhausted tonight; we both will.

Doctors, doctors. I want my life back. To go through the day without medical details, medical phone calls, and medical errands to take care of. All this together with the traveling makes me so weary, how will I have strength to persevere. And if I can persevere, will it lead me to a resolution eventually? Rivka believes it will. She hasn't been doing this as long as I have. I want the reconstruction surgery and put my life back together.

I want to rejoin my family in simcha and lightheartedness.

And I want to believe I will be out of pain.

And I need you all to believe that, too, OK?