I am no one

One of the reasons I'm able to so freely open up and share my thoughts, feelings, and other things from my life that for some might seem very private is because I am no one.

I don't think there is anyone out there that is following everything I say, gathers all of that information I give away, and saves it on their computer so that one day they can make some clip or write an essay about me in order to humiliate and embarrass me. Again, I am no one.

I'm not Michael Jordan, I'm not President Obama, I'm not Meryl Streep, and I'm not Barbra Streisand. I'm not some famous politician, athlete, singer, or actor who needs to watch out for what they say (to not piss off a group of people which in turn could hurt their income). I am just Ilan, and I am no one.

Putting it very roughly, 1% of the people in this world love me, 1% hate me, and 98% don't even know who the hell I am and probably will never know.

And if (and that is a big if for me and most of us) one day I will become someone, then I could simply say that the guy back then who said and did all these things isn't who I am today (the future's today...). I'm not saying that what I'm sharing here on this blog is stupid. I'm speaking in general; about all of us. If one of us does actually became some important figure one day, we could simply and easily argue that like many, if not all of us, we've had our share of bad decisions, mistakes, partying days, and being a dumb 20 something year old. I'm not just speaking about when we were younger. Even later in life we will keep making mistakes, and we will never know everything about everything.

So what's this fear of sharing that is striking so many of us?! What is this phobia about privacy?!

What is this obsession so many of us have about pretending like we're someone else the minute we step out of our home (or in these social media days, how we choose to portray ourselves online)?!

I bet many of us, while sitting in a classroom, had a question, but were afraid to ask because we didn't want to sound stupid. So we didn't ask, and instead hoped that someone else will ask.

Do you really think someone out there is out to get you?! I don't think there is anyone out there that is out to get me, and you know why? Because I am no one!

Do you really think someone out there is so pathetic, has no life, and want to humiliate someone like me or you that no one really knows about?!

Even if there is such a person, when they finally finish their project, their silly master piece, the "humiliation of Johnny," I'm confident when I say that no one is going to care. And you know why? Well, because Johnny, like you and I, is no one.

So speak up, share your thoughts with people, and don't be afraid to say something stupid because we all have done that at one point or another.

"Even a mistake may turn out to be the one thing necessary to a worthwhile achievement"

- Henry Ford

In my last post I pleaded for people to share my blog. I want to thank all of you who did. I hope those who still have some difficulty doing so will be able to over come it. I have seen a great amount of traffic. Over 500 visits in the 24 hours following the publication of that post. I'd like to send a shout-out to some of my awesome supporters around the world in: Netherlands, Ukraine, China, Russia, Korea, and more. THANK YOU!!

I've seen my doctor yesterday and things are stable. This new chemo pills I'm on appear to be doing the trick for now. Unfortunately I'm still losing weight (I'm about 59kg or 130lb), so my doctor prescribed some appetite stimulant. I think it is doing the trick already since I've been hungry all day now, and have eaten more than usual. Also it looks like I'm moving back to Israel where I will be surrounded by more and very much needed family and friends.

Thank you again everyone for sharing, reading, and supporting. Happy holidays.

A small act of kindness

A small act of kindness can save a life. A small act of kindness can have a huge positive impact. A small act in the form of sharing. Not the sharing of your feelings and thoughts for everyone to see, but the sharing of the feelings and thoughts of someone who has already made up their mind to open up their world for everyone and anyone to see. Please share my blog.

I’ll be honest, I’m very disappointed to see the difficulty so many of my family members, friends, and other supporters have with sharing my blog. I’m having a hard time putting myself in these people’s shoes in order to understand their difficulty (feel free to message me and explain your difficulty).

It seems that most people aren’t able to, so freely, open themselves up like I do, and share their feelings and thoughts with the world. I don’t expect people to share like I do. I understand it is hard, yet I’m struggling to understand why it is hard to share a link to my blog, especially when I’ve said what a huge energy boost I get when people share my blog.

I cannot see who reads my blog, but I do see the number of visits, the number of people who stop by my blog to read what I say, and it’s a wonderful feeling to know that people are reading. It might not mean much to other people, but to me it means a lot. Every single visit cheers me up. Every single visit adds gas to my tank, and helps me keep on going. It helps me keep fighting my battle against cancer. It is another way for me to see that people care, that people are in the stands cheering for me to win.

I can only assume some of the thoughts people are having, thoughts that are preventing them from sharing. Maybe they are thinking something like “I rarely go on Facebook,” “I never respond to anything,” or “it’s not just you, I never share anything anyone posts.”

Ok, but here I am being open and honest with you. Telling you what this simple act of sharing can do. What a huge impact it can have on my life. Every time you share you are filling up my gas tank, my energy (which is running very low) to continue fighting. It is a simple act of kindness with powerful consequences.

I’m not asking you to share your thoughts. I know it hard for many people if not most people. You don’t have to say anything. Just share a link. Don’t over think it. It’s not stupid or plain if you share a link without saying anything. I cannot think of anything negative that could come out of you sharing my blog. No one is going to laugh. No one will negatively judge you for sharing my blog. Just like you are uncomfortable saying anything, others probably won’t say anything as well.

They might read, maybe get inspired. Maybe they will even share my blog with their friends. Or maybe they will simply ignore, scroll down, not even see what you shared. Maybe because you did share, someone saw it, then they read my blog and got inspired. Maybe they had a bad day, and saw someone who had a worse day, so suddenly they’re not feeling so bad. Maybe someone who is reading my blog because of your simple act of kindness will have something to say. Something that will inspire me. How great will that be huh?! You didn’t have to say anything, but you were the connection. You brought me and this new reader together. And because of you we are all moving forward, towards something better, greater, happier. Think of you sharing as you voting for me to win the election (and by the way in this election you can vote many times). With your vote I will win. I will win, I will move forward, on to saving the world from evil, and it will be all thanks to you, thanks to your simple act of kindness. Please share my blog.

I’m home most of the day. It is what it is. I’m in a battle with cancer right now. There aren’t too many activities I can do or feel like doing outside these days. My body is very weak, it’s simply a part of the battle, a part of cancer.

Through this blog I’m in my way stepping out of the house, and when you share my blog, it’s like a person that I see outside too. Like another person in the movies to laugh with, or another person in the bar to high-five with when the 49ers score.

I know many people are afraid of this thing – cancer. I know many don’t know what to say or do. But I feel that sharing is easy. When you let your mind take you to thoughts like “what will my Facebook friends think about this post” you are missing the point. You are thinking about yourself, and forgetting your friend that is battling cancer.

I really can’t think of anything negative that can come out of it for you. Only positive. It’s you helping out another person who is battling cancer. You cannot take the meds and chemo for me (unless you want to lose hair and weight). But you can help me in my fight by sharing my blog. Who will make fun of you for sharing, for doing something so good, so positive?! Who will negatively judge you? No one! Don’t be afraid, don’t over think it, just share. Even if you don’t have time to read a post, you can still share it.

You can share a link and say absolutely nothing. Or if you want you can copy this: “this is my friend’s blog, he has cancer, and he is sharing his story with the world.” Or say something else. Maybe also ask your friends to share my blog with their friends. Maybe one of them will have something to say that will inspire me and all of us.

Please share my blog, thank you!

What else? Well not much has changed. My appetite has improved a bit, but not enough. I’m still losing weight, and I’m at a critical point where I cannot lose any more weight. My body is starting to go after my muscles. I’m still feeling weak. Still dealing with chronic pain. I have a CT this week after which I will know if the chemo pills that I've been taking for the past month are working.

Want to be in my clip?

תורגם לעברית בהמשך

I had an idea. I want to make a clip of people saying the word “cancer.” I’m not sure what will come of it. I think my main goal is to help people get over their fear from the word “cancer.” My idea for now is to show about a minute of people saying cancer. I want to capture their tone and facial expression.

So, who wants to participate?

Make a video of yourself. 30 seconds. Say the word “cancer” in any language you want. I only know English and Hebrew. Say it any way you like. But I think being natural, just being you, would be best. Maybe I’ll do more than just showing people saying the word “cancer,” so if you feel like saying more, go ahead. Maybe you can share what comes to mind when you think about cancer.

So if you’re interested here are some guidelines:

• Say the word cancer a few times, and if you feel like it then say a sentence. Either do it spontaneous, or prepare what you want to say before. Don’t over think it, just be you.
• Please try to keep the footage you send under 60 seconds (90 max). I'm assuming for most of you it will be under 30 seconds. I mostly concerned about you having to send a large file.
• If you are using a smartphone please make sure you hold your phone horizontally.
• Any language. If it’s not English or Hebrew, let me know what language is it.
• Either indoor or outdoor is fine.
• I will probably not use all footage, no offense. If the responds are great, I might not have room/time for everyone.
• VERY IMPORTANT. How to film yourself: Zoom in and focus on your head, something like this:

Be prepared for this clip to be on YouTube for everyone and anyone to see. I won’t mention people’s names. So it is only your face that people will know.

I’m not sure what will come of this idea. As with many ideas I have, I get excited, I start working on it, and then fail to finish.

I will give about two weeks for people to send me their footage, and then I will start working on it. Send your files here.

Thank you.

חשבתי על רעיון. אני רוצה לעשות קליפ שבו אנשים אומרים את המילה "סרטן". אני לא יודע מה יצא מזה. אני חושב שהרעיון בגדול הוא לעשות קליפ שיגרום לאנשים פחות לחשוש מהמילה "סרטן". אני חושב שאני אראה דקה של אנשים אומרים סרטן. אני רוצה להראות את המבע על הפנים של האנשים והטון של קולם.

רוצים להשתתף?

תצלמו את עצמכם כ-30 שניות. תגידו את המילה "סרטן" באיזה שפה שבא לכם. אני רק יודע אנגלית ועברית. תגידו את המילה באיזו דרך שבא לכם. אבל נראה לי הכי טוב זה אם תהיו טבעים, פשוט תהיו אתם. אולי אני אראה יותר מאנשים שאומרים את המילה "סרטן", אז אם בא לכם להגיד יותר, לכו על זה. אולי אתם יכולים לשתף מה עולה לכם בראש כשאתם חושבים על סרטן.

מי שמעוניין להשתתף הנה כמה הנחיות:

• תגידו את המילה סרטן כמה פעמים, ואם מתחשק לכם תגידו עוד איזה משפט. תהיו ספונטניים או שתכינו מה שאתם רוצים להגיד מראש. אל תחשבו על זה יותר מדי, פשוט תהיו אתם.
• בבקשה לדאוג שההקלטה תהיה מתחת ל60 שניות (90 מקסימום). אני משער שלרוב האנשים תצא הקלטה של פחות מ30 שניות. אני פשוט מנסה שהקובץ שתצטרכו לשלוח לי לא יהיה גדול מדי.
• אם אתם משתמשים במצלמה של הפלאפון שלכם, מאוד חשוב, להחזיק את הפלאפון מאוזן. אני לא אוכל להשתמש במשהו שהוקלט בצורה אנכית.
• איזו שפה שבא לכם. אם זה לא עברית או אנגלית, תגידו לי איזו שפה זו.
• אפשר לצלם בחוץ או בפנים.
• אני כנראה לא אשתמש בכל החומר, שאף אחד לא יעלב. אם הרבה יגיבו, וישלחו הקלטות שלהם, לא יהיה לי מקום בקליפ לכולם.
• מאוד חשוב. צלמו מקרוב, תתמקדו בראש, משהו בסגנון הדוגמא למטה:

תהיו מוכנים לזה שהקליפ יהיה בYouTube וכל אחד שרק רוצה יוכל לראות אותו. אני לא אפרסם שמות של אנשים. אז מי שרואה את הקליפ רק יראה את הפנים שלכם.

אני לא יודע מה יצא מהרעיון הזה. כמו הרבה רעיונות שיש לי, אני מתלהב, מתחיל לעבוד על זה, ולא מצליח לסיים.

יש לכם שבועיים לשלוח לי את הקובץ עם ההקלטה שלכם. אחרי זה אני אתחיל לערוך את החומר.

קבצים אפשר לשלוח לכאן.

תודה רבה.

long over due update

It’s been a while (again) since I've last posted here. I update a bit more frequently on the blog’s Facebook page. You can go here, press the like “button,” and get more updates if you’re a Facebook user. Even if you don’t visit Facebook often I would greatly appreciate it if you go to the blog’s page and press the “like” button. For some of you it might seem like a fake cheap aspect of life (this whole Facebook/social networking), but for me it’s gas to keep going and fighting this battle. Every single “like” is more gas in the tank.

As always feel free to share my blog and it’s Facebook page with anyone you want, absolutely everywhere you feel like. You can share the blog with family, friends, strangers, anyone. If you've read some of my posts in the past, it should be pretty clear that privacy isn't much of an issue for me. And trust me, if there something that I feel is too private, I will simply not write about it.

So I got back from Israel about a month ago. I had a wonderful little vacation. I enjoyed spending time with family and friends very much. It was a well needed break and reward after almost 6 months of chemotherapy. Unfortunately things haven’t been good since then. The pain has come back, and it’s worse than it ever was.

I saw my doctor as soon as I got back from Israel to talk about the plan, how we are going to continue my battle against cancer. The plan was and still is to be on this new medication called Pazopanib. This new medication was recently approved by the FDA. It is meant to keep fighting the cancerous cells. It is some type of chemotherapy just not as aggressive on the body.

I had a chest CT so that we will have a start point before I go on the medication. The CT showed the tumor is stable, but looking at the measurements it seemed to have grown about 2mm (0.08 inch). Not much at all, but the tumor is already very large (larger than a tennis ball), so any small growth can cause dramatic changes. And in my case this little growth appears to be right where some nerves are.

The pain started coming back already in Israel. I think in my last week there I started taking pain pills. It got worse when I got back, and it just kept getting worse. The pain has been worse than it ever was. I might have had a day or a few hours with as much pain as I have now in the past, but it wasn't so constant. The pain has been so bad that I’m now taking more pills than ever. The pain is located a bit under my left shoulder, and more on the back side. The tumor also affects the blood flow to my left arm, so I also have pain there. More than the strength of the pain, it is the fact that it's constant, all day, and I mean all day. It really wears on me. It is very annoying. It makes it hard to do anything. It makes it hard to focus, and it makes it hard to just relax. I currently have 3 different pain medications. Some I take on a regular basis, and some as needed (which is often).

The Pazopanib (the chemo pill) is another pill I take on a daily bases. One thing annoying about it is that I cannot take it with food. I need to take it one hour after a meal, and then I cannot eat for two hours. Of the many side effects this medication has, one of the main ones is that it causes high blood pressure, so I have to take another pill to reduce my blood pressure. I also have to check and keep track of my blood pressure every day.

I don’t know if it is the pain, all the medications, or my mood, probably all together, but another thing I've been suffering from lately is loss of appetite. If you know me, can you imagine that? Me, not having appetite?! Me, not wanting to eat?! I've never thought I’d say that. I've lost a lot of weight, but I mean a lot. I lost about 10kg (about 20 pounds) in less than a month. I cannot remember a time where I ate so little.

I also cannot drink alcohol with all the medications. I’m not going to take any chances, and maybe just have one drink. No, I’m not going to be drinking at all (not that I’m much of a drinker anyways). Driving is also a problem because all these pain pills can cause drowsiness. So now I’m dependable on others to drive me around. I sometime feel fine to drive, but I prefer not to risk it especially if I’m with someone who can drive instead of me. Sleeping is another issue. Since obviously you cannot take pills while you’re asleep, after a few hours of sleep, the pain pills wear off and the pain starts to come back, and that wakes me up in the middle of the night. Then, ok, I can take more pills because I'm up, but of course it can take more than 30 minutes until the medication kicks in. Also, all these pills are causing me nausea, so much that a few times I've puked the little food I was able to eat.

I feel as if I’m drowning in a pool of despair. I thought and had hopes that things will be much better when I get back from Israel. I felt great after I finished the 6 long chemotherapy rounds. The pain was completely gone, the chemo worked well, the tumor was stable, I was eating, and I weighted I think 71kg, a nice healthy number for someone my size especially after getting so much chemo drugs. I thought I will be on this new chemo pill, maybe have to deal with some minor side effects, but life would pretty much be back to normal (at least what’s normal for me).

I thought I would be free to do pretty much whatever. Maybe go back to school, maybe find a job. Go back to working out in the gym so I can get stronger and healthier. If not school, then at least just learn something on my own, by myself, taking my time. Maybe work on some application ideas I have for smartphones. Something… anything... Instead I feel like I’m losing it. The pain is really drawing all the energy out of me. It’s hard to relax and focus on things. It’s hard to get up and push yourself to do anything (that’s one reason why it took me so long to finally write here on this blog).

The main idea, after starting the Pazopanib, was actually to move back to Israel where I felt I would have a lot more support from family and friends. Where I have adorable niece and nephew that I could charge up, fill my energy tank simply by sniffing them. But with all this pain, I guess it will be wiser to first see that I can control it. And also see how the Pazopanib medication is working. I’m probably going to have a CT in a few weeks. If there is no change then I will probably have some more chemo rounds. Not as long and drastic as the first ones. Just a one day, a few hours in hospital chemo, but it will still weaken me in the following two weeks.

Not being able to get myself to do more with my days is a wonderful recipe for thoughts. And in my case it’s mostly negative and distractive thoughts. Thoughts that are hammering me left and right. I feel like I’m stuck in this circle where I’m trying to push myself, to get myself to do more, to distract myself from all the bad things, the pain, the thoughts, the anger. Yet I keep coming back to the same point over and over again.

It feels like many people, friends and family, are in denial. Once again, I hardly hear from anyone. Maybe they are in denial about my situation, about the fact I have cancer. Maybe I should just get out there, and make it clear: I do not know if I’ll see tomorrow. I know it’s not easy to read these lines, but it’s harder to deal with what they mean as the person with the cancer, especially when you feel abounded by so many people. Perhaps they think something like “ah, it will be fine, you’ll get out of it, we will laugh about this a year from now.” But no people, this is absolutely not certain that I will be here a year from now. This tumor I have is big. It is very big. This tumor is big and in a very complex area involved with many main important crucial arteries, some that are from the heart to the brain. Even if this tumor was not cancerous it would still be life threatening because of it’s location and what it has done to all the arteries in the area.

Before all this pain started, this pain that created this wave of negativity, I was able to get some joy. The San Francisco Giants won the World Series, after an unforgettable playoff run. For those who don’t follow sport, I’m talking about baseball. In the first series (which is pretty much the quarter finals) the Giants were down 2-0 in a best of 5 series. They won the next 3 games, and moved on to next stage. There, they were once again down and behind. This time they were down 3-1 in a best of 7 series. They won games 5, 6, and 7 for a ticket to the finals where they faced the Detroit Tigers. In the finals (another best of 7 series) it was a completely different story. The San Francisco Giants won the first 4 games, sweeping the Tigers, and winning the title. It was the second title in the last 3 years. No one gave the Giants a chance to win it all. And that’s probably because most of the commentators are from the east coast. I guess all those commentators were stuck in some bubble.

As you can see my hair is back everywhere (and I mean everywhere).

Your uneasiness is making me uneasy

I have lots of material of what we could categorize as more serious deep subjects. Some of the material involves feelings and thoughts that might be too personal, some are ideas and thoughts about society (usually things I don't like about society), and some are strong and passionate opinions I have (like peoples' complains about online privacy, especially on FREE websites like Facebook).

I believe I said this before, when I have too much material, I get lost and overwhelmed. I don't know how to organize all my thoughts and where to begin. I also have a tendency to perfectionism in some areas of life, so that too might have stalled me. Or maybe I needed a good break from writing. Also, a lot of these thoughts are unfinished, with no clear point or conclusion (and I feel like they should have one).

I'm in Israel, in the kibbutz (which is celebrating its birthday today), sitting outside at my ima's front yard. I'm going over some of the many hand written notes (I think I have about 30 sheets with notes on both sides). I was thinking about sharing something else a lot longer that I've been putting off because it requires some organization (probably less than what I'm estimating). But as I was going over some of my notes I came by something shorter that I'd thought I start with. Hopefully it will get me going again.

I often feel that people don't want to hear about my life (mainly my health problems). I will avoid situations that might cause people to ask a, what might seem, private question involving my health problems. For example, I might be somewhere in public with friends, and I will notice some people staring or laughing. So I will pretend not to see those people. Sometimes I will notice my friends noticing those people. I will keep walking, looking the other way. I guess I don't want my friends to pity me or make them uncomfortable by having to deal with the situation.

I think that for too many people (friends, family, and others), it seems I'm not comfortable or wanting to talk about and share my health problems (even the small ones, like tears from my left eye which happen because the eye won't blink all the way). Sometimes it depends on the moment, and where I am. Maybe I'm at a loud bar watching a game, or maybe walking in the streets in a hurry somewhere. But more than not being comfortable, I'm just not used to people showing interest and empathy. It could be because I don't give them a chance to ask me questions. Maybe it is because they don't know how or are just uncomfortable from their own reasons.

I tend to get annoyed when friends, family, and other people who know me (not necessarily my health problems) get uncomfortable if someone, say a friend of friend, asks me a question that might seem to be too personal. So now I'm annoyed, and I'm not able to answer this friend's friend's brave question in a warm welcoming way. I'm too ticked off because my friend brought in some tension because of their uneasiness.

Also, I'm pretty sure that some people (usually people I just meet, like a friend of a friend) are uncomfortable around me (if it was the other way around, I might have been so as well). It's hard and frustrating having to make people feel comfortable. I'm quite the anxious person myself, so now I find myself having to make others comfortable and at ease?! Instead I usually tend to not even bother. Perhaps that makes me look a bit anti-social at times. Often I just wait to see who is comfortable to approach me.

This is about where this sheet of notes ends. I just now thought that instead of some conclusion I will just share an old post I wrote about some of my health problems. Problems that it would be nice if people, especially that ones I hang out with, will know and try to remember... http://www.ilanoflife.com/2012/06/some-things-you-should-know-especially.html

Oh also, my hair is slowly growing back. So far mainly my beard, it looks thin and diluted. Funny thing, last night I had a dream where at one point I was looking in the mirror and I had about an inch long hair on my head. I couldn't understand how it grew so much in one day...

The front yard