one of the tzir

New People Start Here

noreply@blogger.com (Yehuda Solomont) — Fri, 04 Apr 2008 08:52:00 +0000

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

noreply@blogger.com (Yehuda Solomont) — Thu, 03 Apr 2008 22:55:00 +0000

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

noreply@blogger.com (Yehuda Solomont) — Mon, 31 Mar 2008 10:37:00 +0000

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

noreply@blogger.com (Yehuda Solomont) — Wed, 20 Feb 2008 16:25:00 +0000

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

noreply@blogger.com (Yehuda Solomont) — Mon, 18 Feb 2008 16:03:00 +0000

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

noreply@blogger.com (Yehuda Solomont) — Wed, 30 Jan 2008 15:19:00 +0000

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

noreply@blogger.com (Yehuda Solomont) — Wed, 16 Jan 2008 21:54:00 +0000

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

noreply@blogger.com (Yehuda Solomont) — Mon, 14 Jan 2008 20:23:00 +0000

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.

Bone Marrow Biopsy

noreply@blogger.com (Yehuda Solomont) — Thu, 10 Jan 2008 22:13:00 +0000

SInce leaving the hospital 2 months ago, I've spent most of my time at home, gaining strength. Now, as long as I don't have to walk up any steps, bend down, or do anything remotely strenuous I feel great, and can sometimes forget that anything is wrong with me at all. Then it hits me. I suddenly get tired lose focus mid conversation, get short of breath of breath or just get that general feeling that I'm 75 years old.
But complaints aside, I feel better than I have in months. I remember being in the hospital and thinking that there was no way I could go through another ATG, let alone a bone marrow transplant. At one point I was so frustrated by the care I was planning to pack my bags and go to Hadassa. But being at home heals far more efficiently than hospitals can, I thought it was because of the sleep, now I know it is:

"Current clinical-care protocols routinely and severely deprive critically ill patients of sleep at a time when the need for adequate rest is perhaps most essential," said Dr. Randall Friese, assistant professor of burn/trauma/critical care at UT Southwestern

In the past few weeks, I have been sighted in various places around the neighborhood. As my strength returns, I need to and have been able to get out more often. The funny thing about all of this is that I'm totally psyched to get on to the next stage, get a bone marrow transplant and be done with it, only the doctors have been more reluctant.
Originally they told us to wait a month to see if the ATG treatment would work. then they said 3 months, now the doctor says that since there is a positive upward trend in my blood counts we will wait longer, even though the three months were up 10 days ago.
A story:
A very good friend of mine insisted that while I go through my treatment I read catch 22.
He reasoned that plenty of people are reciting Tehilim or prayers with me in mind, and that he could attest to the great healing powers of Catch 22. His sister was in the hospital with severe complications during childbirth. While other read Tehilim, he sat outside of her room all night and read Catch 22, in the morning her condition changed for the better. Since then, he reads the book over and over as inspiration.
Now, although Catch 22 hasn't healed me, it has given me much insight into my condition and for that I am grateful to my friend's insistance. You see, every week I go to the hospital for my weekly checkup hoping that the doctors will give me an answer to all of my problems, or at least reveal the next course of treatment, a plan, or something. Yet almost like clockwork, every week, they decide to wait yet another week before deciding what to do. It's almost like they wish that something drastic will happen, either I get terribly sick and they admit me to the hospital for emergency treatment, or I get better and go on with my life. But my counts are so stable in their mediocrity that the doctors have no clue what to do. This condition is best described by Joseph Heller in the book:

"Yossarian was in the hospital with a pain in his liver that fell just short of being jaundice. The doctors were puzzled by the fact that it wasn't quite jaundice. if it became jaundice they could treat it. If it didn't become jaundice and went away they could discharge him. But this just being just short of jaundice all the time confused them"

Last week I had another bone marrow biopsy. For some reason everyone grows up learning at some point in their life that extracting bone marrow is an excruciatingly painful procedure. I'm not sure when that ever comes up in the k-12 curriculum, but it's just one of those things that everyone seems to know. Well I'm sorry to burst your bubble, but it doesn't hurt.

I was lying in the fetal position in the examination room, waiting for this humongous needle to pierce my bone. The doctor was great, she explained each step before. I had fasted that morning because she had planned to administer general anesthesia and she warned me that one of the side effects was amnesia, and that I would probably forget what happened this morning. In the meantime the woman in the bed next to me who had just gotten the same procedure started snoring. On top of that I didn't want to forget all the episodes of 30 Rock that I had seen that morning. So I opted out of the general for local. I got scared for a second when the nurse raised her brow at me, but the doctor said it would be fine. She walked me through the whole procedure and it didn't hurt at all. The only scary part was the "dentist like feeling" of drilling when she pushed the needle into the bone, but it really only sounded funny.

Results:
Full results aren't back but under the microscope it appears that I have all the different types of cells growing, which is a positive sign. but again, it's only positive enough to stall further treatment, but I'm far from being healed.

Blood Counts:

Hemoglobin 7.6

Platelets 22,000

White blood count 1.2

Neutrophils 0.7

randomsurfing,tumblr.com

noreply@blogger.com (Yehuda Solomont) — Wed, 09 Jan 2008 18:53:00 +0000

At the behest of my top advisor, This blog will be dedicated to my illness and feelings. The problem is that for most of the day I try not to think about my feelings too much, I like to relax watch tv and read. So I've creating an outlet for the random stuff that I find, hmm... I think I'll call it "Random Surfing". There I'll post videos, pictures, websites and articles that I come across. check it out.

Bush Visits Jerusalem

noreply@blogger.com (Yehuda Solomont) — Wed, 09 Jan 2008 18:10:00 +0000

It has been reported that the US state department spends 25,000 dollars an hour on incidentals when a president visits our country. What no one take into account is the effect on the Jerusalem economy. This morning I got a cup on coffee on Emeq Refaim, nowhere close to where Bush was, yet they were blocking traffic on such a key street. In addition, the municipality gives no warning as to which streets will be closed or for how long. My friend parked in an area the was quarantined, and he can't get to his car for the next few days. I saw a delivery guy for a pizza shop that got stuck after a delivery. The streets were empty, I wonder how this visit hurts Jerusalem businesses bottom line. My father caught the motorcade on Ramban st. on his cellphone:

Google AdSense

noreply@blogger.com (Yehuda Solomont) — Sun, 06 Jan 2008 20:44:00 +0000

Since my blog gets about 50 visits a day, I thought I would experiment with Google Adsense, so don't forget to click on my sponsers, I'll report back in a month to tell you how it went.

Blogged with Flock

Email Bankruptcy

noreply@blogger.com (Yehuda Solomont) — Sun, 06 Jan 2008 18:07:00 +0000

Previously, I mentioned that my inbox had swelled to unmanageable proportions. Many people get into the same predicament when they go away on vacation, get ill etc. There are two mainstream approaches to managing overwhelming inboxes, but they both fall short:

Responding to the oldest emails first, the problem is the new email continue to amass.
Answering the newest ones first, business as usual, and during email lulls go back to the older ones. The problem with this approach is that the oldest emails don't get responded to for months.

Recently I have heard of a new approach revolutionized by Lawrence Lessig the creator of the Creative Commons License, He proposed to put everything behind you and declare "Email Bankruptcy". From what I heard, he does it every year on his birthday. He sends a letter to his entire address book saying that he has hereby declared email bankruptcy, and from that point on you should not expect to recieve a reponse. If the email sent was important please send it again.

So, quoting venture capitalist Fred Wilson:

"I am so far behind on e-mail that I am declaring bankruptcy, If you've sent me an e-mail (and you aren't my wife, partner, or colleague), you might want to send it again. I am starting over."

Healthcare in Israel

noreply@blogger.com (Yehuda Solomont) — Sat, 05 Jan 2008 15:54:00 +0000

One of the things that has crossed my mind many times during this ordeal is how treatment would have differed if I had still lived in America. The system here has worked so flawlessly, and has made me feel that everything has balanced out. What I mean is that in Israel a person can get an anxiety attack just from the thought of visiting the post office. People show signs of road rage while sitting in line at the bank, as if terror isn't a big enough problem. Yet I know feel that enduring third world quality customer support is worth the benefits of the health care system. Since my first Doctor's appointment, I have not paid a cent for anything. Our parking ticket was even validated. Whatever you think of Michael Moore, I strongly advise seeing his movie "Sicko", it was an eye opener for me, especially during the US election season.
This clip by a CNN correspondent about his botched surgery is also a must see:

noreply@blogger.com (Yehuda Solomont) — Thu, 20 Dec 2007 22:51:00 +0000

I've already gotten complaints that my last blog post was too brief, and I acted as if I've been blogging regularly, that's my style, deal with it.

My Doctor is at a conference/vacation in the USA, I'm really just sitting around waiting. By the way, my medication can probably cure all the bald people in the world (not that baldness is a disease) my hair has been growing at an alarming rate.

Flock, Barometric Pressure and other things

noreply@blogger.com (Yehuda Solomont) — Thu, 20 Dec 2007 19:22:00 +0000

Once the hate mail started coming in at a steady pace, I realized that I couldn't hide any longer. But everyone out there whose complained about the tardiness of my posts has fallen into the same trap that I have. Because since my last blog post nothing has changed with my condition.
My blood has not budged an inch. I guess this is a good thing considering that I haven't had a blood transfusion since the nurse forced one upon me a month and a half ago, this makes me a "responder" to the ATG, based on Dr. Neil Young's article, which is a good thing, but I'm still only half way to being a "robust responder", time is of the essence.

In the meantime, I caught a cold, which was expected, especially since I've been trying to get back to a normal schedule and walk further than around the block.

A few new discoveries:

In this world of Facebook, twitter, flickr, gmail, myspace etc. it's a little overwhelming to check all of your various accounts, I found this great new web browser "Flock" that helps you organize a lot of that. To understand what it's all about go to

http://daily.mahalo.com/2007/12/19/md026-flock/

One of the "perks" of my condition was that I didn't have to go to a huge 5 day military training excercise. My friend Idan Dershowitz was gracious enough to share some pictures of what I missed

I have a little headache today. My cousin Yoni claims that it is due to extreme changes in barometric pressure, anyone know about that?

Excel sheet of my health

noreply@blogger.com (Yehuda Solomont) — Sun, 25 Nov 2007 15:14:00 +0000

Remember that time that I was woken up at 4:30 in the morning to a mysterious blood test. So the funny thing is that none of the other doctors knew about that blood test and the results went missing in action. For a while I suspected that this doctor had a secret lab in her apartment that she was using to do tests on me in those old fashioned beaker with the blue and green liquid.

So now, for the sake of that doctor and anyone else that is interested, I present: Yehuda's blood counts since my ATG in Excel format. I promise that I won't post anymore blood counts for a while, there have just been a lot of requests. I hope to update that spreadsheet often as I get new results, so check back often. According to Neil Young, the world expert in Aplastic Anemia, I need to reach 50,000 (or 50 on the excel sheet) platelets by December 30th for the ATG to be considered "effective".

My Blood Counts

noreply@blogger.com (Yehuda Solomont) — Wed, 21 Nov 2007 22:28:00 +0000

It is possible that someone will advise me against what I am doing, but below are my full blood counts from the past month for those hardcore enthusiasts. My ATG finished on October 1, these counts are from October 22 and on.

noreply@blogger.com (Yehuda Solomont) — Wed, 21 Nov 2007 22:07:00 +0000

I recently discovered this site: http://aplasticcentral.com/Aplastic_Anemia_Stories.asp

I thought it was a good read about other people with Aplastic Anemia

noreply@blogger.com (Yehuda Solomont) — Wed, 21 Nov 2007 22:03:00 +0000

The Mask

Certain celebrities can get away with wearing a surgical mask and just hanging out with friends:

but I apparently can't.

We went for our first out-patient visit to Shaarei Zedek on Tuesday, it was also my first time leaving the house and we were a bit wary of the germs floating around in the wild, so I as my King of Pop counterpart decided to distance my self from the public at large by wearing a mask.

However, unlike Michael Jackson people don't assume that I am protecting myself from them, rather I, Yehuda, must have some horrible disease such as Malaria or Cholera. But of course, we live in a politically correct society where people won't outright show their fear of me, yet I feel fear in the little things. Perhaps someone will choose to walk on the other side of the hallway as he or she passes me, or they will choose to take the next elevator. All I want to do is shout out: "It's not me, it's YOU".

Thanksgiving Resolution

noreply@blogger.com (Yehuda Solomont) — Tue, 20 Nov 2007 18:30:00 +0000

It has been a really rough week for Sarah and I, transitioning into home life again. Physically, I feel about the same as I felt in the hospital, only I'm home and everything seems normal. It's been hard for me to sit down at the computer and update the blog, but I have a newfound commitment to all of our friends.

Many have been trying to reach me, whether by phone, email, or bribes such as books, homemade fleece quilts and donuts. Don't feel discriminated against, I have answered no one. You aren't the only person that I hate and I don't want to talk to, I have shut everyone off. My mind is focused 100% on recovering and spending time with Sarah(/books/computer/T.V).

It takes sickness to make you realize just how many people in the world care about you (that and an email inbox with over 1000 unread messages and a voicemail box with over 100).

So, in appreciation of my friends I will attempt to recommit myself to regular updates, that will be my way of communicating with everyone.

A few thoughts since I've been home

One of the things I've been pondering at length is human perspective. It seems to be an innate feature of our brains that our perspective is short and selective. most of my examples are political so I will spare you the chance to argue, let's just say it is something I believe.

With Aplastic Anemia perspective is key. We are used to the typical cycle of: Getting sick, not going to the doctor, getting more sick, insisting to spouse/mother that we are fine, getting more sick, succumbing to said spouse/mother, going to the doctor, filling prescription, getting better.
That cycle takes at most a month, where the getting better part takes about a week. With Aplastic Anemia that week can take about a year or two. But our innate inability to feel perspective almost marred our judgment.
After a month of waiting with no results our patience was strained, we planned to rush into a bone marrow transplant. But my point is that not only did the lay people: myself, Sarah, my parents think that we should move towards a transplant my doctors thought the same - even professionals that are familiar with the scientific literature and know that results can take three months or more lost perspective, not because they didn't know any better, rather they succumbed to their gut feeling that has no ability to take things in perspective, they were as impatient as we were.

Now I realize how wrong we were. Today, after almost two months since my treatment I finally feal some results, albeit minor ones.

Here are my numbers:

Hemoglobin: 7.1 (normal: 14-15.5)
Platelets: 16 (normal: 150-450)
Neutrophils: 0.6 (normal 1.5-2.5)

This is phenomenal progress if compared to my numbers from 2 months ago, we were just expecting it to take a week. It's a little unnerving when you get blood results at least twice a day and they seem the same, but now I realize how excellent they are. Kind of like how you don't notice that someone is growing taller when you see them every day.

I know that my platelets seem low since the last post, but considering that I haven't had a platelet transfusion in over a month 16 is excellent. The best news is that I chose to forgo a red blood transfusion this week, leaving my total number of red transfusions at 15.

The next month is critical in our decision whether to pursue a transplant. The American Hematologist society has their yearly conference in two weeks in Atlanta so 75% of all Israeli hematologists will be out of the country for most of December, meaning that a transplant is not even an option until January.

The saying in the medical field is "Don't get sick on July 1st, since the new interns start then, and don't get Aplastic Anemia in December".

Many more posts to come, I'll try. Thank everyone for all of your support.

noreply@blogger.com (Yehuda Solomont) — Mon, 05 Nov 2007 12:12:00 +0000

After who knows how long, I'm finally home. Meuchedet (my insurance company) sends a nurse every other day to take blood and monitor my condition (I bet they wished that I had joined Macabi).

I would say that I feel now slightly worse than the day I decided to go to the doctor. The wide expanse of our apartment compared to the hospital is a little unnerving, and I have to catch my breath when I walk around the living room.

I know there are those that follow my blood levels like it's the Dow so here they are, if you are an aspiring hematologist, or just like fooling around with blood in your spare time, maybe you can offer a second opinion:

Hemoglobin: 6.8 (normal: 14-15.5)
Platelets: 21 (normal: 150-450)
Neutrophils: 0.3 (normal 1.5-2.5)

Slides of my blood available upon request

Day 37

noreply@blogger.com (Yehuda Solomont) — Tue, 23 Oct 2007 17:56:00 +0000

Today marks the 37th day since my first visit to the E.R. 31 days straight in the hospital, 22 days since the end of the ATG.

looking back on the whole ordeal, I believe that the biggest miracle is the fact that I didn't get sick (stomach sick, aplastic anemia I had) in the 2 weeks before Rosh Hashanna.
You see, Sarah was in the U.S, and I wasn't as carefull with the cleanliness of the apartment, or the kitchen, food, George Forman... to say the least.

As the saying goes: "single people wash their dishes before they eat, married people - after"

it' 5:30, why am I awake?

noreply@blogger.com (Yehuda Solomont) — Tue, 23 Oct 2007 03:41:00 +0000

At 4:30 this morning a doctor came in and mumbled something about needing to take blood, turned on all the lights, poked a needle in me and left... At 4:45 the nurse came in turned on the light and hooked me up to the I.V... At 5:00 they came in to check my vitals.

Am I crazy, or is this a little early?

Now on normal days they usually start this routine between 6:00 and 6:45, which for 25 year olds is very early, yet I can understand that the majority of the hospital population are probably in that early bird demographic.

but 4:30? Come on.

I confronted the nurse. She told me they always start this early. I said - 4:30? So she's like, no it's 5. (ugh. I wasn't talking about the time now, I meant the time you started. Duh). She tried to bargain with me and claim that they actually started at 4:45 which is like 5, which is so close to 6:00 that it was childish of me to argue.

"we start on different sides of the ward every day, today was your side, but if you want I can disconnect you and then reconnect you in 45 minutes at 6"

Thanks for totally missing the point, I'm telling on you to my sleep-expert uncle.

quick update

noreply@blogger.com (Yehuda Solomont) — Mon, 22 Oct 2007 17:53:00 +0000

A new video is coming soon... We're working on it.

just sitting around waiting, they now say that we should wait for at least another month to see if the atg worked. So I'll be in hospital for a while.

there is a perfect match for a bone marrow transplant, no I don't know who it is.

one of the strangest side effects of this whole ordeal is that I've stopped liking coffee, which I must admit sounds strange until I read that one of my medications leads to "taste perversion", which also explains my sudden craving for salad.

while reviewing some of the classic films of our times I couldn't help but notice the strangely familiar line spoken in The Big Lebowski: "Dude, where's my car?" "Where's your car dude?"

that makes you wonder. (I apologize to my former chavruta, the real life dude, if that was obvious)