Ilan of Life
Living with Neurofibromatosis (NF), and now, fighting cancer.
Tuesday, April 2, 2013
Will you spare me some gas?
Not much has happened in the last two weeks. The main thing is that I feel drained, completely worn out. I feel like I'm running on the reserve of the reserve. The very last drop of gas, of energy. Every so often the car chokes, doesn't run smooth, like when you're not changing gears smoothly. I break down, and run out of Kleenex. I used to be strong. But nowadays I feel weak. Very weak. I'm still in lots of pain. I haven't been able to control it completely. It comes and goes. Now for instance I'm fine, and so I'm able to think and write. The pain is influencing my sleep greatly. I will wake up every 2-3 hours. It's usually because of the pain. Then I will be up for 2-3 hours before I try to sleep again. This affects my days. I get tired and I take naps during the day. Again no more than 2-3 hours of sleep. So over the course of a full 24 hour day I might be sleeping 8 hours, but during the other 16 I'm often tired. I find myself reading something on the web and dosing off, my head falls back. I shake it up, I start reading again. It really takes a huge emotional toll on me. The pain, the fatigue, the worsening of my left arm and shoulder, the empty days, the waiting and the not know for what. All of these things are also contributing to keeping my undesirable weight. It's hard to eat when you're in pain, and when you're tired. It's especially hard to eat when it's very hard to swallow down the food. I used to be much stronger, but it's been getting harder and harder to shake off all the emotional burden I'm experiencing. All the negativity is strongly in the game. How I'm still holding up I don’t know.
Tomorrow I'm supposed to have an MRI to see what has changed. To see if any of the other small tumors decided to grow this year. To grow enough to add more pain. I get claustrophobic when it comes to MRI, and it's going to be a long scan. And since there is no way I can lay down on my back without moving with all this pain I'm having, I will be put out completely for the duration of the scan.
Thursday should be a great day, a day that will hopefully start charging my batteries. All the kittens have been adopted, and the mother is waiting for me. The people at the clinic told me the mother is very friendly and likes to be pet.
Well, it 2:30 at night, I'm going to watch a few more videos of cats, and then sleep (maybe I'll update this post later this week, and add some of the clips I find on YouTube).
Sunday, March 17, 2013
ruff ruff, meow
It's been weeks since I've posted something (with words). Things have been rough rough. This is not what I had in mind when I decided to move back to Israel.
In the two weeks before I moved, I felt a bit weaker than normal which was probably because I've been losing weight prior to those two weeks. I got down to about 59 kilos (130 lb). I was a bit concerned I will keep losing weight, but I've been stuck on 58 kilos for weeks now. So at least I'm not losing any more weight for now.
It's been harder to swallow more than ever. It makes it so that I need to chew longer in order to break down the food more so I can swallow it. Now, because I chew a lot I get tired, it takes me longer to eat, and I feel full pretty fast. I feel full probably because of all the chewing which makes the brain send a message to my body as if I already ate enough for this meal.
Of course there is also the pain and my mood which aren't helping in having a healthy appetite. I noticed that more than not having appetite, the actual problem for me is the pain and the swallowing. I'm not sure how much can really be done about the swallowing. It has to do with the whole left side of my neck and face being weak and paralyzed in some areas. In regards to the pain there are ways to help, it just takes time finding the right recipe. I've been trying a few kinds of pills, and also some candy called Actiq. This week I should be approved for medical cannabis.
I read something about an Israeli company that is growing a new cannabis plant without the THC (which is the compound that gives users the high feeling). If they have this specific plant and it will help my pain it will be perfect. Although it's fun being high sometimes, it's not something I want to feel all day every day. The cannabis should also act as an appetite stimulant.
The pain in my left arm has gotten better. I think it's better than what it was a month ago. What's left with the left arm right now is mostly the movement which I think has also improved, but not too much. I've been going to a physical therapist twice a week, and doing some exercises for the arm.
But, during this month the right side has been bugging me more and more. There are two main spots that are painful. One on my neck, and the other on my hip (right where the bone is). I think it has to do mainly with my weight loss, and my inability to gain some of it back. My body is, overall, very weak (though blood tests are fine). It could be that not having much meat around my bones is making my body go after muscles. There could be tumors in those two painful spots. I'm feeling something in my neck, and actually, it was there before this whole cancer started, but I'm not positive it is a tumor or some other body part (I'm supposed to have some scans soon that will show what's going on there). I'm also feeling something where my hip is. So maybe with less meat in my body these small tumors are now pressing more on near by nerves.
Moving back to Israel meant finding new doctors that I can see for follow ups and more. I've seen quite a few doctors since I moved back almost two months ago. I'm getting sick of all these hospital visits (hmm I think I actually talked about this in a recent post). Anyways, these trips can really drain my energy, the little energy that I still have. Adding to this the pain, the limitation with my left arm, the new pain on the right, the inability to gain weight, and just the overall tiredness... and this is really not what I had in mind when I decided to move back.
I was really hoping I could have a daily routine within a month after moving back. But it is what it is, things don't always go as planned.
It's not 100 percent all bad, and I have times where I'm able to step out of the house and do. Starting around the early evenings is when things usually get better, and I'm able to breathe. I went to see a movie with my cousins last week. We saw "This is 40" which was disappointing. I thought it will be a lot more comedy, but it ended up being much more of a drama movie. I've been stepping out for concerts at the kibbutz's pub. These shows are awesome and very intimate. There are only about 100 spectators which makes it almost like a private concert. And of course you can't beat walking 5 minutes to get to the pub. This Wednesday I'm going to another concert. I'm not really familiar with the artist, Eran Tzur, but it should be fun. Here is a taste:
Last weekend I was also able to step out of the house to join my family and go on a day trip near the kibbutz. I have some family members visiting from Los Anageles. So that probably helped to force myself to get in the car. It's hard to plan too much things ahead of time. We went on this trip last Saturday, and I already felt pretty good around 10 in the morning. But then from Sunday through at least Tuesday I didn't feel so well. Thursday I felt better, as well as Friday, and Saturday. So you never know. The pain comes and goes whenever it feels like it.
My cousins brought me an awesome gift. I felt like showing it off to everyone, which meant I had to write a post already (I have been writing things on paper, but didn't make a post out of them yet). I love the design my cousins chose. I will try to share a link through which anyone could get a t-shirt of their own.
In the two weeks before I moved, I felt a bit weaker than normal which was probably because I've been losing weight prior to those two weeks. I got down to about 59 kilos (130 lb). I was a bit concerned I will keep losing weight, but I've been stuck on 58 kilos for weeks now. So at least I'm not losing any more weight for now.
It's been harder to swallow more than ever. It makes it so that I need to chew longer in order to break down the food more so I can swallow it. Now, because I chew a lot I get tired, it takes me longer to eat, and I feel full pretty fast. I feel full probably because of all the chewing which makes the brain send a message to my body as if I already ate enough for this meal.
Of course there is also the pain and my mood which aren't helping in having a healthy appetite. I noticed that more than not having appetite, the actual problem for me is the pain and the swallowing. I'm not sure how much can really be done about the swallowing. It has to do with the whole left side of my neck and face being weak and paralyzed in some areas. In regards to the pain there are ways to help, it just takes time finding the right recipe. I've been trying a few kinds of pills, and also some candy called Actiq. This week I should be approved for medical cannabis.
I read something about an Israeli company that is growing a new cannabis plant without the THC (which is the compound that gives users the high feeling). If they have this specific plant and it will help my pain it will be perfect. Although it's fun being high sometimes, it's not something I want to feel all day every day. The cannabis should also act as an appetite stimulant.
The pain in my left arm has gotten better. I think it's better than what it was a month ago. What's left with the left arm right now is mostly the movement which I think has also improved, but not too much. I've been going to a physical therapist twice a week, and doing some exercises for the arm.
But, during this month the right side has been bugging me more and more. There are two main spots that are painful. One on my neck, and the other on my hip (right where the bone is). I think it has to do mainly with my weight loss, and my inability to gain some of it back. My body is, overall, very weak (though blood tests are fine). It could be that not having much meat around my bones is making my body go after muscles. There could be tumors in those two painful spots. I'm feeling something in my neck, and actually, it was there before this whole cancer started, but I'm not positive it is a tumor or some other body part (I'm supposed to have some scans soon that will show what's going on there). I'm also feeling something where my hip is. So maybe with less meat in my body these small tumors are now pressing more on near by nerves.
Moving back to Israel meant finding new doctors that I can see for follow ups and more. I've seen quite a few doctors since I moved back almost two months ago. I'm getting sick of all these hospital visits (hmm I think I actually talked about this in a recent post). Anyways, these trips can really drain my energy, the little energy that I still have. Adding to this the pain, the limitation with my left arm, the new pain on the right, the inability to gain weight, and just the overall tiredness... and this is really not what I had in mind when I decided to move back.
I was really hoping I could have a daily routine within a month after moving back. But it is what it is, things don't always go as planned.
It's not 100 percent all bad, and I have times where I'm able to step out of the house and do. Starting around the early evenings is when things usually get better, and I'm able to breathe. I went to see a movie with my cousins last week. We saw "This is 40" which was disappointing. I thought it will be a lot more comedy, but it ended up being much more of a drama movie. I've been stepping out for concerts at the kibbutz's pub. These shows are awesome and very intimate. There are only about 100 spectators which makes it almost like a private concert. And of course you can't beat walking 5 minutes to get to the pub. This Wednesday I'm going to another concert. I'm not really familiar with the artist, Eran Tzur, but it should be fun. Here is a taste:
Last weekend I was also able to step out of the house to join my family and go on a day trip near the kibbutz. I have some family members visiting from Los Anageles. So that probably helped to force myself to get in the car. It's hard to plan too much things ahead of time. We went on this trip last Saturday, and I already felt pretty good around 10 in the morning. But then from Sunday through at least Tuesday I didn't feel so well. Thursday I felt better, as well as Friday, and Saturday. So you never know. The pain comes and goes whenever it feels like it.
A day trip. This was at Tel-Gezer |
On Friday we had a nice family dinner |
My cousins brought me an awesome gift. I felt like showing it off to everyone, which meant I had to write a post already (I have been writing things on paper, but didn't make a post out of them yet). I love the design my cousins chose. I will try to share a link through which anyone could get a t-shirt of their own.
AWESOME t-shirt |
You might have noticed that I got a haircut and also trimmed my beard. Here are some more close up pictures:
Before and after. |
A little gardening with the kids |
Football practice. Although soccer is by far the most popular sport here in Israel, we, Israel, are just no match for pretty much anyone. |
Being stuck at home a lot means there are lots of lonely times. I feel like I'm reaching the point where I'm going to lose it from being home so much. So I'm planning on getting a cat. I would have gone with a dog, but a dog is too much work for now. A cat that is friendly and likes to be spoiled should be good enough. I hope this meow will bring my spirit up.
Thursday, February 21, 2013
Old dos games
I have been writing some thoughts down, but I have nothing to share just yet. I got to organize those thoughts better. In the meantime, I'll share with you some YouTube clips of old dos games. Games that I used to play for hours. I hope these clips will bring up some fun memories for some of you. How many of these games do you remember?
Commander Keen
Wolfenstein 3D
BriX
Bumpy
Thursday, February 7, 2013
A random thought plus an update
Just a thought:
Why is it amazing to people when a child does something as well as, or loves something as much as one of their parents?! If it's drawing, painting, playing an instrument... Why do people get excited when a child looks like one of the parents?! "awww, she has your eyes." Wow, really? This whole nature and evolution thing is amazing. Isn't this how things work? We are supposed to be like our parents, what's so surprising here? I'm not trying to mock anyone. I'm honestly trying to understand because I am confused and a little frustrated that I can't feel and get excited like others do.
So it's been tough since I moved back to Israel. My left arm is bugging me a lot, and is limiting me like never before. It hurts just to carry my arm around. It hurts when I get up from a chair, when I put on a shirt, or even when I roll in bed. I wake up more physically tired than when I went to sleep. It's as if I slept on the floor.
I take some pain pills when I wake up. But it takes about an hour till they kick in, and even then, the pills don't always make all the pain go away. I'm limited and very dependable on others. I'm stuck at home most of the day, and when I go out it is mostly to some doctor appointment.
I thought about it the other day, and I think that if I add up all the days I've been to some doctor appointment and other hospital visits since I was born they will add up to a whole year. Just this summer alone, with all the chemotherapy rounds and other appointments I probably spent over 6 weeks in hospitals.
Some of you who work all day, or go to school might say "I would love to have a month off just to sit at home" but you're not thinking it through. Imagine being home all day for 30 days. Not 30 days where you're free to go out, travel, and have fun. No. 30 days of just laying around at home. Not that fun trust me.
This physical deterioration of my left arm and it's consequences are affecting my mental state negatively. The solution is to step out of the house more. To go out, to see people, but it's hard to even get myself to step out.
I was able to step out yesterday to see a live concert at the local pub with my twin cousins. Maor Cohen and Peter Rut performed together. It was a very good show!
Somehow I was also able to see the Superbowl. Here in Israel it started at 1:30 in the morning. I was able to take a long nap during the day so that I'll be able to stay up for the entire game. They showed it on a big screen in the local pub. They served drinks and pizza all night. By the end of the game I think it was almost 6:00 in the morning, I was very tired and since the Niners lost I was able to easily fall asleep. It was an annoying lost for the best team in the league. And by "for" I do not mean "to the best team." That's right, even though the 49ers lost the most important game, they're still the best in my book, and probably by most analysts. It was an annoying lost because they didn't show up for the first half of the game. I've never seen the defense miss so many tackles. Oh well, on to next year. Which I think will be tough because all we will be waiting for is the Superbowl...
Why is it amazing to people when a child does something as well as, or loves something as much as one of their parents?! If it's drawing, painting, playing an instrument... Why do people get excited when a child looks like one of the parents?! "awww, she has your eyes." Wow, really? This whole nature and evolution thing is amazing. Isn't this how things work? We are supposed to be like our parents, what's so surprising here? I'm not trying to mock anyone. I'm honestly trying to understand because I am confused and a little frustrated that I can't feel and get excited like others do.
* * *
So it's been tough since I moved back to Israel. My left arm is bugging me a lot, and is limiting me like never before. It hurts just to carry my arm around. It hurts when I get up from a chair, when I put on a shirt, or even when I roll in bed. I wake up more physically tired than when I went to sleep. It's as if I slept on the floor.
I take some pain pills when I wake up. But it takes about an hour till they kick in, and even then, the pills don't always make all the pain go away. I'm limited and very dependable on others. I'm stuck at home most of the day, and when I go out it is mostly to some doctor appointment.
I thought about it the other day, and I think that if I add up all the days I've been to some doctor appointment and other hospital visits since I was born they will add up to a whole year. Just this summer alone, with all the chemotherapy rounds and other appointments I probably spent over 6 weeks in hospitals.
Some of you who work all day, or go to school might say "I would love to have a month off just to sit at home" but you're not thinking it through. Imagine being home all day for 30 days. Not 30 days where you're free to go out, travel, and have fun. No. 30 days of just laying around at home. Not that fun trust me.
This physical deterioration of my left arm and it's consequences are affecting my mental state negatively. The solution is to step out of the house more. To go out, to see people, but it's hard to even get myself to step out.
I was able to step out yesterday to see a live concert at the local pub with my twin cousins. Maor Cohen and Peter Rut performed together. It was a very good show!
Somehow I was also able to see the Superbowl. Here in Israel it started at 1:30 in the morning. I was able to take a long nap during the day so that I'll be able to stay up for the entire game. They showed it on a big screen in the local pub. They served drinks and pizza all night. By the end of the game I think it was almost 6:00 in the morning, I was very tired and since the Niners lost I was able to easily fall asleep. It was an annoying lost for the best team in the league. And by "for" I do not mean "to the best team." That's right, even though the 49ers lost the most important game, they're still the best in my book, and probably by most analysts. It was an annoying lost because they didn't show up for the first half of the game. I've never seen the defense miss so many tackles. Oh well, on to next year. Which I think will be tough because all we will be waiting for is the Superbowl...
Wednesday, January 30, 2013
Superbowl
Most of you can skip this post. It will probably bore you. It's about the 49ers and the Superbowl (sports)... But for me it is everything and anything (:
This Sunday the San Francisco 49ers will face the Baltimore Ravens in Superbowl 47 which will be played for the 7th time in the Superdome in New Orleans. Let's celebrate with some facts and stats about the history of the Superbowl games. Well, mostly facts and stats about the 49ers' Superbowl history...
The last time the 49ers played the Superbowl in New Orleans was in 1990 when they recorded the most lopsided game in Superbowl history crashing the Denver Broncos 55-10. 55 is the most points scored in a Superbowl game by one team. It is also more than the total points scored by the other three teams in the NFC west division (where the 49ers play) on their last Superbowl appearance: 50.
Two of these three teams, the Arizona Cardinals and the Seattle Seahawks, both lost in their one and only Superbowl appearance. They are the ones responsible to why there is one team who has more Superbowl wins than the 49ers. The Pittsburgh Steelers who won 6 titles (one more than the 49ers), won their last two titles against these two teams. In 2006 they beat Seattle 21-10, and in 2009 they beat Arizona 27-23. Arizona, who were down 20-7 half way into the last quarter, came from behind scoring 16 points, and took the lead with less than 3 minutes to play. They lost thanks to an amazing catch by Santonio Holmes with 35 seconds to play.
The 49ers though became the first team to win 5 Superbowl titles in 1995. A year after the 49ers won their fifth title the Dallas Cowboys joined the club beating the Pittsburgh Steelers who also had 4 titles at the time.
The New England Patriots have 7 Superbowl appearances, 5 in the last 10 years, but they've lost more than they've won (3-4).
From 1985 to 1997 the NFC conference won every Superbowl. 4 of them by the 49ers. Another 7 were won by the NFC east division. The other two wins came from the NFC north division and are the Superbowls in which the New England Patriots lost their first two appearances.
Also during these years the Denver Broncos lost 3 Superbowls in 4 years (the last to that 49ers team who scored 55 points). But it was probably even more painful to the Buffalo Bills organization who lost 4 Superbowls in a row during these 13 years drought for the AFC teams. Unlike Buffalo who have yet to win a title, Denver were able to ease the pain with two Superbowl wins in a row (1997-8).
The Cincinnati Bangals lost both of their Superbowl appearances, both to the 49ers (which where the 49ers' first 2 appearances).
In their last Superbowl appearance (1995) the 49ers scored 49 points. Since then, no team scored more points in the Superbowl (the Tampa Bay Buccaneers came close in 2003 with 48 points).
The average points scored by the last 9 Superbowl winners is 25.9. The average points scored by the 49ers in their 5 Superbowl appearances is 37.6. Appearances which they all won. Together with the Ravens who won their one and only Superbowl appearance (in 2001) they have a perfect 6-0 record. Who will stay perfect?
The last 3 Superbowl winners came from 3 different NFC divisions. Will the 49ers complete the series this Sunday?
Superbowl 47 will meet the 49ers and the Ravens, who are coached by brothers. I don't envy their parents, but I guess that's looking at the half empty part of the glass.
In a best of 7 I believe the 49ers would have been the champions, but in one game anything can happen. Who will win? We'll know in about 100 hours from now...
This Sunday the San Francisco 49ers will face the Baltimore Ravens in Superbowl 47 which will be played for the 7th time in the Superdome in New Orleans. Let's celebrate with some facts and stats about the history of the Superbowl games. Well, mostly facts and stats about the 49ers' Superbowl history...
The last time the 49ers played the Superbowl in New Orleans was in 1990 when they recorded the most lopsided game in Superbowl history crashing the Denver Broncos 55-10. 55 is the most points scored in a Superbowl game by one team. It is also more than the total points scored by the other three teams in the NFC west division (where the 49ers play) on their last Superbowl appearance: 50.
Two of these three teams, the Arizona Cardinals and the Seattle Seahawks, both lost in their one and only Superbowl appearance. They are the ones responsible to why there is one team who has more Superbowl wins than the 49ers. The Pittsburgh Steelers who won 6 titles (one more than the 49ers), won their last two titles against these two teams. In 2006 they beat Seattle 21-10, and in 2009 they beat Arizona 27-23. Arizona, who were down 20-7 half way into the last quarter, came from behind scoring 16 points, and took the lead with less than 3 minutes to play. They lost thanks to an amazing catch by Santonio Holmes with 35 seconds to play.
The 49ers though became the first team to win 5 Superbowl titles in 1995. A year after the 49ers won their fifth title the Dallas Cowboys joined the club beating the Pittsburgh Steelers who also had 4 titles at the time.
The New England Patriots have 7 Superbowl appearances, 5 in the last 10 years, but they've lost more than they've won (3-4).
From 1985 to 1997 the NFC conference won every Superbowl. 4 of them by the 49ers. Another 7 were won by the NFC east division. The other two wins came from the NFC north division and are the Superbowls in which the New England Patriots lost their first two appearances.
Also during these years the Denver Broncos lost 3 Superbowls in 4 years (the last to that 49ers team who scored 55 points). But it was probably even more painful to the Buffalo Bills organization who lost 4 Superbowls in a row during these 13 years drought for the AFC teams. Unlike Buffalo who have yet to win a title, Denver were able to ease the pain with two Superbowl wins in a row (1997-8).
The Cincinnati Bangals lost both of their Superbowl appearances, both to the 49ers (which where the 49ers' first 2 appearances).
In their last Superbowl appearance (1995) the 49ers scored 49 points. Since then, no team scored more points in the Superbowl (the Tampa Bay Buccaneers came close in 2003 with 48 points).
The average points scored by the last 9 Superbowl winners is 25.9. The average points scored by the 49ers in their 5 Superbowl appearances is 37.6. Appearances which they all won. Together with the Ravens who won their one and only Superbowl appearance (in 2001) they have a perfect 6-0 record. Who will stay perfect?
The last 3 Superbowl winners came from 3 different NFC divisions. Will the 49ers complete the series this Sunday?
Superbowl 47 will meet the 49ers and the Ravens, who are coached by brothers. I don't envy their parents, but I guess that's looking at the half empty part of the glass.
In a best of 7 I believe the 49ers would have been the champions, but in one game anything can happen. Who will win? We'll know in about 100 hours from now...
Here the two Harbough brothers can be seen scouting players together. John (left) coach of the Ravens, and Jim coach of the 49ers. Picture taken by Brian Spurlock-USA TODAY Sports. |
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