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If you have happened upon this site today for the first time then you should probably start here:

Then go through the archives from September 2007 and on.

AWOL update

The other day I was resting when Sarah franticly came into my room and whispered that 2 soldiers in uniform were at the door looking for me.

I was sure that 2 MPs were standing there just waiting to take me away. Turns out that my unit sent two soldiers from the base (between Beer Sheva and Eilat) in order to take me down there.

Sarah and I sat them down, gave them some cold water and told them the whole story + gave them weeks and weeks worth of blood tests to bring back with them to the negev. After 10 minutes they realized that I was legit, and they sheepishly left for their 3 hour ride back.

The best part is that I have a friend in the same unit who faked being sick, and they let him go, sight unseen over the phone.

For those not familiar with the Israeli army - nothing I have told is out of the ordinary.

AWOL

First of all, since my parents are reading this for the first time - Ab and Im - Don't be alarmed, it will all work out.

The Story:

Around three months ago I received a phone call from the military office in charge of my reserve duty, confirming the fact that I had reserve duty at the end of March. I cordially informed them that since I'm sick I won't be there and I faxed the appropriate medical documents and they told me that all was in order. Afterwards I called my company commander and told him, he was sympathetic and showed interest in visiting me at home (even though he is new and I've never met him).

....Yesterday I got a phone call that the doctor will not approve my discharge without inspecting me himself at the base. Now this might have been a fair request, had the base not been near Eilat!

So, in the meantime, I have been classified as AWOL, while I sort this out. Ironically, I suspect that the doctor is the same one that gave me the eydrops

But, stop worrying. Anyone who has dealt with the Israeli army before is familiar with this insanity... all will work out.

The weekly doctor's visit

Usually we go to the doctor on Tuesday, but in Jerusalem even the chance of snow scares everyone away and no one showed up at the hospital yesterday.
I think the visit today was one of our most successful ones to date. If there was a formula that could give an absolute answer as to whether all my counts are up or down, today we would have reached an all time high.

Hemoglobin - 8.4
Neutrophils - 0.9
Platelets - 27

It's supposed to snow again in Jerusalem tonight. Hard to remember 3 snow days in one winter, it must be global warming.
Last time it snowed was right around the time that my doctor insisted that I try to get back to a normal life. So, I decided that against everyone's better judgment I would venture out into the snow. As we past by the president's house, I thought it would be nice to take a picture in his unplowed driveway that was being cleared by 2 secret service agents with squeegees. As Sarah was about to take a picture, one of the agents started yelling at her that it was illegal. This really got me started since I enjoy fighting for my constitutional rights for no reason other than they are rights. I started arguing with the guy about my right to freedom and the fact that journalist photograph the house all the time etc. The other agent admitted that I was right and even offered to take the picture. And after all of that.. my eyes were closed, but I got the picture

New post coming soon, in the meantime, here is a video taken yesterday. Sid the father in law, Sarah and I went on a trip down to the Ramon Crater. My first trip anywhere since Eilat.

NPR segment on Aplastic Anemia

From NPR:

At age 12, Edward Llanos contracted a potentially fatal blood disorder called aplastic anemia. Fortunately, one of his brothers was a match for a bone marrow transplant.

Now, a healthy 18-year-old Edward interviews his family about his illness and discovers that his parents and brothers still feel its effects.

Expectations and hair growth

After the whole bone marrow biopsy ordeal last week, Sarah and I couldn't wait for the Pathology report. We thought that somehow drilling into my hipbone and inspecting the bone shards under a microscope might lead to some definitive path towards my full recovery. A week had passed since the biopsy and there was still no report. The doctor said that she had seen the slides and it all looked positive. But the report! that's where the answers must lie. Well, we got the report today. It had one line: everything looks positive, there are cells of every type visible. The doctor told us the same thing a week ago.
all we're really asking for is a path, even a long and difficult one towards normal blood counts. Sarah and I sometimes have this dark conversation where we discuss what's worse, cancer or aplastic anemia. I keep on arguing that aplastic anemia is at such a disadvantage since it is such a rare disease, even if it is worse than some forms of cancer. There is no Dana Farber, no Jimmy Fund, no "Aguda Lemilchama Ba-Aplastic Anemia". We gave in a request for aid from the Israeli Cancer Society, still no answer, it will be interesting to see how they categorize my condition, are we "cancer worthy".
a friend of mine told me that for conditions such as mine, there is a non profit organization called The Society for Rare Diseases, I wonder if I qualify for that. Sometimes it's a little disconcerting that the largest study of Aplastic Anemia had only about 200 patients. For my doctors I'm a study as much as a patient. How many patients with my condition have they possibly seen 10. Cancer experts have seen thousands. The world expert on Aplastic Anemia probably hasn't seen more than 500. In any event, tomorrow is Tuesday which is doctor day, we'll see what they say.
On another note, I've had like 5 haircuts in the past 3 months. Cyclosporin, the drug I'm taking makes hair grow just about everywhere at an alarming pace, just got another haircut yesterday.
I know that I promised to post all the random stuff at randomsurfing.tumbler.com, but I just couldn't resist, this video embodies my current relationship with Sarah, I also added some pictures so you can see that I don't look deathly ill.