Tuesday, May 29, 2012

Second round is done.

So second round is done. Finished it last Friday. It is very exhausting being at the hospital for 5 days. I feel very limited. I feel like I'm stuck, chained to a wall. Of course I can discounted this fluid giving machine from the wall, and walk around. The machine has a 5 hour long battery. But still, I feel stuck. Nothing has gone wrong so far, so I feel like there should be away to get this chemo drugs on the go. I guess perhaps because I'm young, I haven't suffered much side effects. One side effect I do get is constipation which goes away nicely after 2 days at home. That side effect, at least, tells me that I got one thing that is working very well, and is extremely healthy as of now at least, that is my digestive system. It is nice to have a well working digestive system because - sorry for the too much information - I love having a good number two.

Another side effect that I noticed is while I'm in the hospital there aren't much food I feel like eating. My taste buds are hypersensitive. For example the only avocados that I can eat are the small ones that come in a net bag. It get's better 2-3 days after I finished my chemo round. Since yesterday I've been hungry a lot. I will eat something, and after 3 hours I will start feeling hungry again. It is annoying because I want to watch TV, read a book, maybe teach myself something, and those are hard to do when I'm hungry.

I used to eat a lot. Just 2-3 years ago I would stuffed myself, chug everything down, big steaks, burgers, appetizer before, finish all the sides, and cannot skip on some hot lava cake to top it off. Since then though I started eating differently. You could say I eat more meals, but smaller ones. I don't like getting stuffed, and feeling like you feel when you shouldn't have eaten those few extra bites. Today I know where is that moment, I can control myself, and I just stop. "I enjoyed half it, I'm happy, do I really need the other half right now at this moment or am I satisfied?" That's pretty much the, by now, automatic thinking the goes on while I'm getting to that point of no return. It seems like more often than not I would take home a box with leftovers. It could be as much as half my dish. I see it also as a good way of saving money. I now have lunch for tomorrow. This meal I'm paying for is actually for two meals. I would even sometimes take a box even though what's left on my plate is less than 5 bites. Most people would just finished the plate, and then they get stuffed. I see it as a small snack I will have later. Now, with chemotherapy, and me losing weight (I'm at 59kg which is probably the lowest I weighed in over 10 years), I have to  go back to that old Ilan. My friends used to say I have a hollow leg. That was after a night we went up to San Francisco, and I was eating everything in reach. It is kind of nice though, I HAVE to eat fattening foods with tons of calories.

It's hard having you life on hold. That's what it feels like right now. There aren't many things I can do. Cannot really work because I need two weeks off every two weeks. Cannot go to school pretty much same reasons, I will miss lectures, quizzes, tests, papers' due dates. There are things I can do to pass time, but life just feels on hold for me right now. It kind of takes away your energy and motivation to actually start some project. I need to find a way to push myself more. To just do.

Next week I'm having a CT scan. It will show if and how much the chemotherapy has reduced the malignant parts of the tumors.

Quick reminder, if you have some extra change, or if you are rich, or if you know anyone who is please help me with my fundraiser: http://ctf.kintera.org/nfwalksanjose2012/ilan. THANK YOU!!!

Also if you are in San Jose on June 16, please come enjoy a nice sunny morning, and a short walk with my NF family and I. We are trying to raise awareness for Neurofibromatosis. Don't take this lightly, your participation is greatly appreciated. Every single extra walker out there DOES make a difference. HUGE difference. Join my team here: http://ctf.kintera.org/nfwalksanjose2012/ilanoflife.

Thanks again for reading, and supporting,

I now have a Facebook page, please like and share https://www.facebook.com/ilanoflife thanks.

Sunday, May 20, 2012

My paintings

I like doing arts. I like to paint, I like doing collages, and there are probably more things I would enjoy doing that I haven't tried yet. Here are the last five paintings I did (I'm not the best photographer, so some of the colors are a tad off):

This first one I painted last year in April, and sent to Israel for my ima's birthday.

This second one I made the same week, sent it as well in the same package. I made it for my niece's birthday which is 2 days after my ima's.

This is another one I made last year in April after which I stop painting, not sure why.

This next one I painted this week, and I think it is my favorite out of the five.

This is the last painting I did which I finished it today.

The little hair I had after I used the clippers was coming off a few days ago, so I decided to shave my head completely with a razor. It is the first time I shaved my head with a razor. My usual hair cut is a buzz cut the length of about 4-5 millimeters.

These past two weeks felt like forever. They felt more like a month then just two weeks. I haven't been doing much. Mostly just staying home passing time. I've been playing Madden 2012 on my PS3 with the awesome 49ers. Watching some sports, and other TV shows like the never ending and always fun to watch The Price Is Right. I think they made a great choice going with Drew Carey as a replacement for Bob Barker. I've been probably checking Facebook repeatedly and obsessively more than ever. I really must find more things to do. Get into some weekly schedule. Maybe sign up for some short art classes or workshops.

Tomorrow I go in for my second chemo round. Another 5 days at the hospital. Last time the side effects were surprisingly mild, and I hope this time won't be any different. Also let's hope that my roommate won't be annoying and too loud. I plan to do some reading, some knitting, and maybe some writing. You guys would be ok without me posting for 5 days right? (-:

What else happened the last few days... oh! CHELSEA are the CHAMPIONS of EUROPE!! Although they finished only in the 6th place in the English premier league, they manage to win the biggest title in Europe. They've done so with a lot of heart, belief, and determination. They beat the great Barcelona team in the semis, and then Bayern Munich in the finals after a penalty shoot-out. I'll admit, they were not the better team, but it isn't always the better team that comes out victorious.

I did not take this photo myself. It was taken from www.uefa.com
FYI I'm talking about soccer here, or as they call it in Europe and pretty much everywhere else beside the US: football. Growing up in Israel, football is pretty much the biggest sport. Basketball is pretty big too. So I grew up on football. However, living here in the US for over 8 years now, and not being able to watch much football, I've kind of lost touch with football. The time difference makes it hard to follow football from back home and Europe. So now I'm much more into American football, and I've been a fan of the 49ers since forever. They looked great last year, and this coming season expectations are very high. I hope the players can withstand the pressure. I'm confident they will!!! GO NINERS!!!

Thursday, May 17, 2012

Where is my hair?!

A week ago I decided to shave my head. I didn't want to wait until the hair started to fall off. I didn't like the old clipper I had which lying around for a long time, and wasn't working well, so I bought a new one. I didn't shave my head all the way, just a buzz cut without a number, not with a razor. A few days ago I noticed that my hair, in other areas of the body, started falling off with an easy pull. Kinda weird. I wonder how much hair will fall off, and where. I wonder how smooth my body will be. Will the hair in my eyebrows fall off too? That would be freaky.

Although I thought about it in the pass, I decided not to buy a console to play with. I used to play Madden 2005 on a PS2 at one of my friends' place for hours upon hours, so I figured that if I buy one for myself I would be playing all day all night all the time. Not a good idea while in school. But now I took time off school, and I'm not working either, so I have a lot of free time. I wanted to buy an Xbox since some of my friends have one, so that would have made it easier to play each other online. However my brother who currently lives in NYC, and soon is moving to Cali has an Xbox. Plus, he won another one for his app Play The Hunt. If you have a Windows Phone you should check it out. So instead of an Xbox, I bought a PlayStation 3. I also remembered that I actually liked the PS controllers better than the Xbox because they are smaller, so it was all good. I don't play too many games. Mostly just Madden and Fifa, so I bought the 2012 versions of both. I bought the Fifa at a store near my house, so I could play right away, and I ordered the Madden from Amazon. I had a $30 gift card, so it came down to only $15. The two games that came free with the PS3 didn't interest me, and I didn't want to open them in case I wasn't happy with the PS3, and wanted to return it. They told me I would have to pay for the games if I opened, and wanted to return the PS3 which is kind of messed up. What's the point of giving me free games, if I can try them with the PS3?! The two games are Killzone 3 and God of War collection which includes 1 & 2. My brother suggested I sign up for GameFly. It is like Netflix, there is a monthly fee, and you can rent games. So I decided to sign up for it. I'll probably use it for 3-4 months, try some games, and then buy the ones I like online. Games that don't have squads, like the Fifa or Madden, I don't have to buy the newest version. If I buy the version just before the newest, the prices drop to less than $20. Anyways, GameFly is a great way to explore games before you buy them since you cannot return games if you open them. If you are considering signing up, please sign up through this link you will get a free month, and you will give me a free month too (nothing wrong with taking a little advantage of my blog right?!).

I'm also trying to learn how to knit. My ima is teaching me. I'm going to start with something basic that I like anyways - a scarf. So far I've just been practicing. I think I got the hang of it. The main difficulty is how the hold the knitting-needles.

I also like to paint using acrylic paint on canvases, so I painted one painting the other day. Came out pretty nice. I will try to post some pictures of this last one as well as the ones I did about a year ago by the end of the week.

I've been feeling pretty good overall. Not feeling much pain. I might lower the dose for the pain medicine, or just wait for the second round of chemo to see what the doctors say. Energy is a little low probably because I'm not sleeping full nights, but I always had sleeping issues. I have severe sleep apnea. So severe that the doctor don't know how I stay up during the day. I guess it has been this way since I was very young, and somehow I got used to it. I adapted to the severity, and can manage. Though it might be affecting my ability to focus when I'm trying to read things like for school work. I have hard time falling asleep mostly because I cannot stop thinking. Although I've been able to fall a sleep by midnight most of the days in the past two weeks, right now it is 3am. In away I could say I'm back to normal, my normal hours. Second round of chemo is this coming Monday. It hasn't even been two weeks since I finished with the first round, but it feels like way more. I got to find more things to do with my days.

Saturday, May 12, 2012

Let's go for a walk

A month from now, on Saturday June 16, the 2nd annual San Jose NF 5K walk will be held. I would love to see you there to support my NF family and I. You have no idea what your support can do to us. Do not take it lightly. You DO make a difference by showing up. June 16 is summer time, and it should be a nice sunny day. The walk will be held at Vasona Lake County Park in San Jose. It's a an amazing park with a beautiful lake. You will have a great time. You will enjoy a nice short walk in the park (5K isn't too long...). AND you will be doing this all for an amazing cause.

There will be young children dealing with Neurofibromatosis walking that day, and the more people they see the better they will feel. Imagine yourself as a 5 year old having to live with this harsh disease. Then coming to this walk, and seeing lots of people walking to raise awareness for your disease, walking to support you. These children don't have to know you personally. Just seeing the amount of people at the walk will do them good. I promise you they will be super excited, and the more of you show up the more joyful they will be. I can see it now. It will not only impact that sunny Saturday on June 16th for them, it will impact the coming week, the coming month, and more. This walk is not only about raising awareness, but about energizing these kids, so they will be hopeful, and have what it takes to fight their battles with Neurofibromatosis.

You can give everything I just said SIMPLY by coming down to the park for 3-4 hours. It is also a great exercise for you. Everybody wins! And if you know me personally I really hope you will make this small effort, and come show your support to me. I don't like to beg, but it will mean a lot to see you there.

You can join my team by pressing here, then press "Join Our Team" under the wording "EVERY STEP MAKES A DIFFERENCE."

The address of the park: Vasona Lake County Park. 333 Blossom Hill Rd. Los Gatos, CA 95032. The event will be at the Circle Group site. It's a huge park. Just make sure to come to the main entrance, and there will be signs.

Check-in for the event is at 9:30am, and the walk starts at 10:30am. Registration is only $20.
Also, since the event is, I believe, run mostly if not completely by volunteers, the registration fees go towards research to find a cure for NF. Refreshments will be provided, and there will be a raffle, face-painting, and fun activities!!

There are some great prizes at the raffle. Last year 6 amazing people and friends of mine showed up, and I believe we won most of the prizes. Percentage-wise, as a team, we probably ruled other teams. Not that it is a race, but your luck will be with the right team.

Donations are also a great way to support the NF family. You can help me reach my fundraising goal here. Although donations are greatly appreciated, it is through these walks where we, the NF family, see, feel, and need your support.

Thursday, May 10, 2012

A week home

I've been home a week now. I was released from the hospital last Friday after 5 days of chemo. Maybe it is because I'm young or maybe it is because it was my first round of chemo, but everyday during the hours I was getting the chemo, I actually felt better. While I wasn't getting the chemo I felt weak and tired. It could also have been all the medications I was getting against pain, nausea and other side effects that were helping me. I don't know, I just found it a little strange.

The night I released was the toughest night I've had. I felt fine when I left the hospital around 6-7pm, but then the pain started to get strong. It was the worst in that week, and the worst in months. I think I skipped some of the pain medication before I left the hospital because I wasn't feeling any pain. I was excited to go home, and I felt like I don't need anything right then at that moment. "I'll be fine" I thought to myself. I woke up multiple times during the night. I puked a little at one of those times. I think I was trying to puke because I was feeling nauseous. All these medications can cause some hallucinations, and I think I woke up a few times quite confused.

They installed a port in my right upper chest last Tuesday. What's a port in medicine?
A port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter which is a flexible tube inserted through a narrow opening into a body cavity connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected, and blood samples can be drawn many times. It is usually with less discomfort for the patient than a more typical "needle stick". You can read more about it here.

In the first few nights at home the port was making it very difficult to fall asleep because I sleep on my stomach. It's getting better now.

Taking all these preventative drugs can be very heavy on the body. It's hard to focus, it's hard to sit and do things. Things like reading a book, or writing a post for the blog. I think the pain medications are causing my to feel fuzzy, it effects my vision a little. I kind of see something like the stars you see when a cartoon character gets hit in the head.

I think the first night was also very hard spiritually. I was feeling good when I left the hospital, then 2-3 hours later, when I was home I started feeling bad mainly because of the pain. I was thinking "Is this what's it going to be after every round, for 5 months now? And what if 6 rounds won't be enough? What if I will have to find a different chemo?"

My ima (mom) is amazing. I don't know how I would have gone through all this without her. It's is not easy to be so dependent on someone else. I'm dependent on my ima, the doctors, the nurses, the medications. For the medications I have a chart where it says what I need to take, when, what amount, and I record what time I took what and how much. For the pain medications it is more up to me.

When I'm in the hospital I'm in a shared room with another cancer patient which depending on who you share the room with can make it very uncomfortable. Luckily during the first round I didn't suffer from my roommates, but I fear at one of those rounds I will get some annoying roommates. My energy level isn't high (and expected to get even lower), so it is hard to do basic things like making food. I think the port has made it even harder to swallow, at least it did for the first few days, I think it is better now, I just have to remember to chew longer than usually. But again, I'm pretty much dependent on someone to help me with going grocery shopping and cooking. My ima, again, is amazing. Both my parents are very helpful, each in their own way.

It would have been hard with no parents to help me. It is hard not to think ahead, say 20 years from now, suddenly another cancer, then what? My parents will be too old, hopefully I'll have someone new in my life, a woman, to help go through it. Even if I would, it would be tough on her. Having to work, raise kids, and take care of her man too almost all day. When I'm in pain, it's hard to stay spiritually up because I'm thinking this is just week one. I try to bounce out of it, talking to myself "you are strong, you are whole, you are healthy" something like that. I believe we, humans, can do wonders with our subconsciousness, but it's hard to keep up with it. You gotta be telling yourself some prayer again and again every day for a few months to see results. You got to find a time of day and do it. And if you don't truly believe talking to your subconsciousness can do anything, it is hard to get yourself to do it. I believe, but I'm just maybe too lazy, just don't feel like it at times, I forget, just want things to happen without having to work for them.

The last two days have been great. Pain is getting a lot better. There are two types of pain medications that I was taking. Long and short. The long one I'm suppose to take very 12 hours. The short one is for extra boost, and I can take it every 4 hours. I went outside, ate outside, went with my ima to do some grocery shopping, and more. I'm even getting back to myself where I'm procrastinating stuff. Like posting here on my blog. I have other things I wanted to share that happened this past week. I shave my head, I bought PlayStation 3, my ima is showing me how to knit, and more... But like I just before, and if I haven't then I'll say it again, when I have too many ideas, I get overwhelmed. I want to put things in a chronicle order I want to make sure the post makes sense, that I'm not repeating myself, etc (it's the perfectionist part of me reaching out).

Ok I think I'll stop here. I'll try to say more about the other things I had in mind later today or tomorrow, or the day after... (-: Right now I need to eat something, and then I'm going to go see The Avengers with a friend. I was advised to go during empty early showings, so were going at 12:30pm on a Thursday.

Hope your week is going well, thanks again for reading.

Thursday, May 3, 2012

My blog is circling.

It's nice and heart warming knowing my blog is circling around. I'm almost at 1000 views. I'm getting great feedback on the streets (was getting when I was in the kibbutz two weeks ago). I tend to be modest, and so I'm not always good with getting compliments. I don't make as big of deal as others seem to make from the things I do.

I hope the circles get wider everyday, I hope to reach more and more people all across the globe. I truly believe my life and my stories can inspire and motivate people. That, I think, has been my dream for some time. To inspire and motivate people. To be someone like Tony Robbins, maybe more on the down-low, more personal one-on-one. I haven't listen to too much of his material, just some free clips here and there, and I strongly feel that because of my life story, my experiences, and my looks, I can be successful in this field and help others. I can in my own way help people put things in perspective for people, and I don't think anyone would be able to tell me I'm a hypocrite.

It's day 4 of chemo. It's getting tough. Yesterday was the toughest so far. I had fever, and had nausea for long hours. Today was better. I am getting lots of medications to help with all the side effects. Still, just having to be in the hospital is very exhausting and tiring. Tomorrow, if I have no fever, I should be on my way home around 6pm. Then back the next day to get a shot to boost the white blood cells. I think just being home will already make me feel better. My own bed. No nurses coming in every hour to check something else, no peeing in some measuring pitcher (really annoying). I will be off for two weeks, probably relaxing at home. Thinking a little ahead, 5 more rounds of this... it's going to be hard.

Tuesday, May 1, 2012

Too many ideas

When I get a little lazy, no, scratch that. When I lose time, I'm busy with other things, I tend procrastinate, I over think things, I over analyze things.
I wanted to write a post before, but I wasn't feeling well, I had other things to do like hanging out with family and friends, and just relaxing at home, in Israel. I also didn't have something satisfying to blog about. Then I got (and I do this many times) to a point where I have too much to blog about, and I procrastinate yet again until I find an hour or two where I can sit down and nicely organize all the great material gathered up. Of course this perfect hour almost never ever comes. I have perfectionism tendencies, so that can make it hard to just write something, anything. If I have an idea, and I feel strong about it, about the topic, I want to make sure my points comes across well. If there are some facts I need to use in the post, then I have this urge to do some research myself, so that I can feel I'm being true with my readers. Trusting some article of a single person doesn't seem enough to me. Later I brainstorm my idea, and more related ideas come to mind. So I start getting overwhelmed, so mush good things, thoughts I want to share, how do I organize them all that the whole post will make sense?! It starts to feel like a paper for an English class, so I have to try to remind myself that it is not some English class. That it is a blog, a journal, a conversation.

Yesterday I got the first part of the first round of chemo. It is five days every time, and I need to stay in the hospital for five days each chemo round mainly for monitoring. Thanks to some dozens of I-don't-remember-what medications I haven't had any unpleasant side effects. I really really really hope it stays this way. I hate feeling nauseous, I think even more than having this agonizing pain. Pain which, however, with some new pain medications they gave me here seem to be working well to relieve it. The doctors and nurses said however that I might still feel those side effects once I'm released home and the blood cells counts start to drop.

I didn't get much sleep at night, I think I'm going to crash for a couple of hours once I'm done with this post. Today chemo is schedule to start in about two hours. I had a port inserted in my left chest today. It makes it easier to give me all the chemo drugs and liquids, in stead of having to give them through the IV which needs to be replace every 4 days and cannot handle as much liquid at once, like the port can.

I think I will feel ok this week and will have lots of time so I'll try to get some of those other topics I wanted to share. Don't get too excited, their not that big, I was talking more in general in the beginning of the post.

Thanks again for reading, and for you support, Ilan.

Come join my team for the 2nd annual NF walk in San Jose on Saturday June 16.