Should Ald Aquaintance Be Forgot Update 12-31-2008

It's been quite a year, and one that I am glad to see out the door. 2008 pretty much sucked for me, my family, and a lot of others I know. I hope 2009 is better; although it certainly couldn't get much worse.

I was going to do a highlight and lowlight list, but I decided not to. If you read this blog, or you know me, you know what they are.

I go in for some additional scans Friday, and as soon as I get the results from those and the others I took last week, I will post them here.

To all of you, may you and your families have a blessed New Year filled with happiness, health, and prosperity.

To my family, I could not do this without you. Thank you.

Long Time No Post Update 12-27-2008

Let me fill you in on what's been happening since last we spoke... yesterday I had some MRI's done as well as a bone scan. Next Friday (Jan 2nd) I will have a PET scan as well as some CT scans done. This will give all of us an idea of where the disease is and what steps we will take next. As soon as I know, I will post it here.

I caught a cold right after I got back from San Francisco, and it took me quite a while to recover. Two weeks ago, my tumor flared up something fierce and that knocked me for a loop. I haven't experienced that sort of pain for quite a while. I am pretty well recovered now (knock on wood).

The holiday season has been bittersweet for me. Quite frankly I am looking forward for 2008 to be over. This year pretty much sucked for me. However, all of my horoscopes say 2009 is supposed to be a highlight year... anything has got to be better then the year I just went through.

Happy Holidays to you and yours.

Update 12-15-2008

I have written before about looking through various public blogs online and being disgusted by some of the things I read. In a public forum open to everyone, anyone can say anything. This, on the surface, seems like a good thing. Upon further examination, I think it is not.

People can and do say anything they want in a public forum. They can make remarks that are insulting. They can make remarks that aren't thought out well. They can make remarks which have nothing to do with the actual subject matter. These remarks distract from the forum topic and prevents a true two way (or multi way) conversation or discussion. They, in fact, inhibit free speech.

I am becoming less of an advocate for "free speech." If the definition of "free speech" is that anyone can say anything they want to, I think I am not for that. My opinion is that speech should be a conversation, or dialog, between people. I don't advocate that we should all have the same opinion. But let's at least have some ground rules that people will stay on topic and not be uncivil to each other. Otherwise, it all becomes noise.

I write this because I was reading an open blog on the San Francisco Chronicle in which the subject was supposedly art and one artist's experience in creating art. Instead, as it so often does, the forum became a place where people inserted their own politics and insults, which had nothing to do whatever with the topic at hand. It was impossible to hold a cogent discussion because the forum was hijacked by attack and rhetoric.

I guess I still expect people to respond to the subject at hand and perhaps bring something unique or personal to the conversation. Maybe my problem is I think a forum IS a conversation, rather then a soapbox.

Absolute Insjustice Update 12/8/2008

I have just been made aware of a terrible injustice which took place in Valentine, Nebraska, today.

The person known as the Butt Bandit has been sentenced to 13 months in prison. His crime? Applying petroleum jelly to his tushis and then placing said tushis on windows throughout the town, leaving an imprint.

Now, let it be said that I personally would not want someone to leave their butt print on my window. Nor would I personally be so inclined as to do something similar, although I have mooned several people during my lifetime (their therapist sends me holiday cards). However, a 13 month stay in the clink for this sort of thing seems to me rather excessive, even for such a traditional, conservative town as Valentine, Nebraska.

I can't help think that this is another example of injustice, right up there with waterboarding and Guantanamo Bay.

I'm thinking a Presidential pardon here.

Jimmy V Foundation Update

As some of you know, Jimmy Valvano was an NCAA basketball coach who died of cancer in 1993. The V Foundation for Cancer research was started that year. It takes its motto from a line in a speech Jimmy V. gave upon winning an ESPY award that year: "Don't give up, don't ever give up."

Even before I had cancer, that particular speech and the circumstances in which it was given has always inspired me. After losing my stepmother and uncle to cancer, it resonated even more. Now that I myself have cancer, it has become a talisman, a rallying cry, to have faith and fight on one more day.

This week is the Jimmy V Foundation's fundraiser. There are numerous events going on both to raise awareness and money, including several NCAA basketball games at Madison Square Garden. Many ESPN personalities will participate. And, no doubt, the Jimmy V. speech will be played. If you haven't seen it or heard it, I am sure it will inspire you.

I am asking my friends and my family to consider making a contribution to the Jimmy V. Foundation for Cancer Research. If you go to their website, jimmyv.org, you can find out more information about the work they are doing and the goals they have to cure cancer and to support those of us who have it.

Anyone who reads this blog who knows me knows how horrific cancer is, not just to the person who is afflicted with it, but to their friends and family. Despite all the advances in treatment and technology, going through cancer treatment is amazingly difficult. Certainly it has been the most difficult, life-affecting event that I have experienced in my short time here. Please consider donating to the V Foundation to continue to fight for a cure and treatment so others don't have to go through this.

Post Thanksgiving Update

It was quite an eventful weekend! My cousin Alison got engaged to a great guy, Mario; and my brother's sister-in-law, Jenny, gave birth Saturday morning to a baby boy. This was on top of Thanksgiving, family, and San Francisco in general. We had a lot of fun. I got to spend some great times with family, particularly my cousins and aunt. I got to take my Mom to some of my favorite San Fran neighborhoods, Haight Ashbury and Cole Valley (as a side note, as we were trying to get home on the N Judah streetcar, the doors closed before my Mom could get on board. Fortunately, I had a cell phone so I could give her directions, and I waited for her at the Powell Street station. It was quite funny). It was nice, but it's always nice to come home, particularly to my new place.

I'm going to save the medical news for tomorrow; hopefully I will have an update on scheduling scans for the cancer tomorrow when I meet with the oncologist.

Thanksgiving Reflections - 11-25-2008

Tomorrow, I'll be going up to San Francisco to spend the holiday with my family. When I think back on last Thanksgiving, and what my concerns were, they seem incredibly trivial. As I recall, I was concerned that a particular advertising campaign I had been working on would close before the end of the month so I could get commission on it. (It did, and I got paid. Ironically, the ad campaign never actually ran to completion.) I was also concerned about a new manager of mine who I didn't particularly like. With all that has happened since, and what concerns me on a daily basis now, I wish that I could be troubled with things like that.

I am so blessed to have my family. Family is the most important thing in life, bar none. Without the support and love of my family, I would be nothing. I love them so much.

I have great friends who put up with me and who humor me, who accept me for who I am and who keep coming back despite my best efforts to make them go away. I am lucky to have an amazing medical support system centered on my amazing oncologist. I have neighbors who really care about me and who, when they see me on the elevator or in the hall, always ask how I am and if there is anything I need.

I appreciate the readers of this blog, if I've met you in person, electronically through e-mail, or haven't met you at all. The fact that you even give a shit about my life and read my self centered updates is something I appreciate very much and certainly don't take for granted.

Obviously this year has been hard and has many ups and downs. Thanksgiving is a time to look back, reflect, and appreciate what means most. Not the material things, although I am blessed there too... but family, friends, and random people who connect with me and are interested in what I have to say. To all I say, thanks. And to all I say, may you have a joyous Thanksgiving, however you choose to celebrate it.

Update 11-19-2008

I'm beginning to settle in to my new place and to begin to feel at home. I really like my new kitchen and the upgrades they put in. To me, the kitchen upgrades are almost worth the move. Overall, the new place is an improvement on the old - the bedroom is much bigger, and so is the bathroom. The downside is the street noise, and the fact that at around 4:15 the sun shines directly into my living room window. But that's what blinds are for, and I suppose I can always get one of those noise screens which will block some of the ambient sounds.

The move really stressed me out and put a lot of strain on me. I am feeling much more tired in general (I call it 'chemo fatigue' since many symptoms feel the same as after I have chemo - I wouldn't be at all surprised if they were related), and it's taking me a while to recover and feel normal again. I am close, though. Hopefully by next week I will be back to feeling my old self again, whatever that means.

Move In Update 11-16-2008

I finally moved in to my new place yesterday. The move was very hard for both my family and myself. I pretty much acted like a crazy person the entire time because I couldn't relax and felt like I had to manage everything. When I get like that I become impossible to deal with and end up pissing everyone off. I'm pretty calm most of the time but when I get stressed I get scared.

I'm getting used to my new place (I haven't been here for more then 24 hours) and looking forward to a quiet day today.

Special message to Yankee fans update

Kish Mir Om Tushis!!!

Because I can.
Because I'm bored.
Because they deserve it.

Please return your seats and tray tables to their full upright and locked position. We are about to land. The local temperature in Rio is 75 degrees.

If That's Movin' Up Then I'm Movin' Out update

(With apologies to Billy Joel)

I have to move out of my apartment. During the recent rains, part of my bedroom ceiling (which has leaked on and off since I moved in) fell down. Fortunately, I won't be moving far. Just a floor down, and an apartment over. It's a nice one bedroom with a different layout then my present place, and it's renovated, which is something I've wanted for this place. So all in all, although moving and change is a pain in the ass for me, the outcome should be good.

For those who need contact info, call or e-mail me.

Kinda Sorta Medical Update 11-3-2208

OK, here's the medical update:

I had chemo today, a regular dose of chemo as I have been getting for the last little while. I did NOT get the long acting dose of standostatin. I am still having problems with the small dose I am on and was not comfortable going up to the long acting dose. I'll have more to say as updates and conversations with doctors take place, but that's the up-to-the-minute latest.

I go on a lot of different blogs these days. Some of these are open to the public, open subject blogs; normally run by newspapers and general interest websites. Some are subject specific and are moderated; but still open to the public by and large. Some are invite only. Each time I go on a general subject, open to the public blog, I get sick to my stomach. There is a lot of anger out there and a lot of angry people have access to the internet and a keyboard. I am constantly surprised and saddened by the quality of people's remarks. Race bating. Anti Semitism. Liberalism equated to terrorism. Comments about people who are in really bad situations, sometimes through no fault of their own, laughed at and mocked, usually in really bad taste. It's enough to make me stick my own head in the sand. It's enough for me to want to take my own blog private so those idiots don't reach out for me. They haven't so far, but my recent experiences online regarding things posted here have made me aware that this blog is completely public and aside from the moderation firewall I've put in effect, anyone can comment.

There is an old saying that goes something like this: if you want to eat hot dogs, don't go to where they make them. Being online is something like that for me; it's great, but when you open things up to anyone, anyone can comment, and they don't have to be nice.

everything but a medical update saturday 11-1-2008

I am not writing about my medical condition today. I may write about it tomorrow, but right now I don't want to think about it. Instead you get a hodge podge of random things on my mind. If they make sense, great; if not, oh well.

Did you hear about the lady in Detroit who refused to give Halloween candy to Obama supporters? Not only did this story make the Internet, but it's national television news too. Lady, you are an idiot. Turning trick-or-treating political is a really bad idea, but getting new coverage because of it is even worse. Her phone number and address are now public. I am sure she is getting death threats. She might end up having to move out of her house. And all because she's an idiot and made some little kids cry because she wants McCain to win. I feel bad for you; the lesson here is, don't get news coverage, because there's no privacy anymore.

I had the chance to go see Gary LeMell sing at Catalina's Jazz Club in Hollywood last night. It was a good time. The LeMell's have been very supportive of me and my family before and during my illness and I appreciate them a lot.

HDNet is showing the Ridley Scott Director's Cut of Blade Runner this month. If you have never seen the movie, you really should; it's a great sci-fi version of film noir. Particularly, see the Director's Cut if you can as this version is much better then the distributed version originally shown when the movie came out. I forgot what a crush I have on Sean Young... and Elizabeth McGovern too (who is not in Blade Runner but like Sean Young is a tall, striking brunette).

The NBA season has started and I've been watching some games on TV. I like pro ball, but I like college basketball much better. Since I have high definition in my opinion the best sport to watch in that format is hockey... some would say golf, some would say auto racing. Frankly, just about anything is good in HD.

That's about it for tonight. Not much of substance but we need cotton candy once in a while too. I'll get serious tomorrow.

Medical Update 10-30-2008

The oncologist gave me some good news yesterday. If all goes according to plan (and you know how that goes), I could be done with chemo by the end of January 2009. How ironic would it be if I ended this phase of my treatment exactly one year after being diagnosed...

It's been about a month since I have had chemo. We've been focusing on getting me up to speed on Standostatin and despite a few bumps in the road it looks like we are almost there. With luck I will be on a long acting dose of Standostatin next Monday, and chemo again the week after.

Bram & Jenna Cohen Update

Last week I wrote some comments regarding Bram Cohen. His wife, Jenna Cohen, responded to these comments directly on the original post, but I thought it would be important for you all to see her response in a more prominant space on the site:

<

Bram never compared himself to Rainman *ever* commenters have. I was actually making your point *for* you that *not* all tech people have AS! I agree with you. By pointing out the hundreds of tech geeks I know and contrasting that by the very few people I know who have AS, I was stating that I do NOT believe that AS = being a nerd, tech geek or whatever. I hate that stereotype as well. There are many ways and reasons a person may have social difficulties and they are not all Asperger's. Not all people with AS are technicals. Assumptions like those were what prompted me to enter in to discussion about these things in the first place. We seem to disagree about very little in fact, though my actual point seems to have been misunderstood by you. I also agree that AS isn't an excuse for immoral behavior or intentional rudeness.
Bram doesn't think so either and has not engaged in immoral behavior to my knowledge. ( Unless wearing socks to a board meeting is immoral ;) I jest. Bram works as hard as any aspie I know of to avoid being intentionally rude or unkind to people. 
Just hoped to clear up our misunderstanding as I was intending to set up a contrast between AS and "tech-geekiness" rather than a comparison.>>

I sent an e-mail apology to both Cohen's. In my original post, I made comments based on what third parties wrote. My comments were made in anger and in hindsight were wrong. I should not have made comments based on what other people said without checking with the person being commented on. I certainly wouldn't want someone to do that to me or my family. The lesson I learned from this is: 1) Always check your sources; 2) Own your words, 3) Don't write in anger, and 4) Technology makes the world an incredibly small place; you never know who is going to be reading your blog : )

Update 10-27-2008

I'll write an update regarding my last two Cohen posts later, but right now I want to talk about insurance companies and my recent experiences with them.

I have applied for Long Term Disability through my group insurance company at work. I received a letter from them today saying they received the application for the claim, and for more information I could either go online or call them.

I decided to go online. I kept getting an error message when I put the address in; that is never a good sign. Turns out they made an error on the letter when it came to the web domain (com vs. net).

Next they asked me to register. I got multiple error messages there, too. What should have taken me about a minute and a half took around five because the website wouldn't recognize personal info I put in. 

Once I registered successfuly and got on to the site, it wouldn't recognize my claim number. Then it said I had no coverage. At that point, I decided to call them rather then waste more of my time fighting their website. 

After going through a typical automated menu, I spoke with a real person (name witheld to protect the guilty). She asked me what I wanted. I said I wanted to follow up on a LTD claim and did she want the claim number. Here is, verbatim, the opening to our conversation:

She: "Are you working?"

Me: "No."

"Are you on disability?"

"Yes, but through the state, not through insurance."

"But are you working?"

"No."

"Are you on disability?" 

"Yes, but through the state. I just applied for a LTD claim through you and I need to know the status."

"Have you applied for a claim?"

"Yes, I just said that."

Pause.

"Are you on disability?"

OH MY FREAKING GOD!!! WHAT IS THE MATTER WITH YOU? ARE YOU LEARNING IMAPARED?!?!

Needless to say the conversation was completely pointless. I hope that not all the people at the insurance company aren't like this idiot. 

Bram Cohen update 10-22-2008

In my last post I berated BitTorrent founder Bram Cohen for using Aspergers Syndrome as an excuse for his documented poor behavior and bad social skills. Now his wife has written on a blog that Bram has never used AS as an excuse for his behavior and that they never sought a formal diagnosis since "he has nothing to prove" (Valleywag.com, 10-22-2008). Apparently, she has worked with Autistic Spectrum Disorder as a teacher for some 19 years and that it was *her* that suggested he might have AS after knowing him for 5 years. She also refers to the old 'people in the tech industry usually have AS' stereotype, as says in the article, "I have 100's of tech friends" meaning she knows a lot of people who have AS (all quotes cited from valleywag.com, 10-22-2008, and 10-20-2008). 

Sorry, but I still can't give you guys a pass on this. What you have done is allowed people who don't know any better to use Aspergers Syndrome in context with an excuse for someone's behavior. You make it seem as though AS is not a real thing but a cop out. You haven't educated anyone as to how AS really affects people and not only that you both have used well known stereotypes in your defenses (Bram with the "I am Rain Man" stereotype, his wife with the "I know 100's of tech friends" stereotype). 

The point is, each person on the spectrum is different. What I have accomplished in my life would be considered by many to be impossible for someone who has AS. Then again, I am sure there are others who have AS who are more socially integrated then I am. Certainly there are people much, much smarter then myself, including Mr. Cohen. I have never used AS as an excuse for anything. I know I am not the most socially adept person but I fake it well and sometimes that's all that matters. I will say it again: a diagnosis is **never** an excuse for bad behavior. 

Second Update 10-19-2008

Bram Cohen is the creator and founder of BitTorrent, a peer-to-peer software application that allows people to share files from one computer to another. It's one of the reasons that the music and film industries don't exist the way they used to 10 years ago. BitTorrent makes it easier for people to share their files and not have to pay for things. 

In a recent article in Business Week, Cohen claims he has Aspergers Syndrome. Mind you, he was never formally diagnosed, which he admits. But he claims he has it because apparently he is an extremely obnoxious person with no social skills whom people truly dislike. I'm not just saying this. I've read it online from more then one source. 

He also posted extremely graphic, sexually explicit writings on his website, causing him and his company a lot of embarassment. Because of this, and because apparently he is an extremely obnoxious person with no social skills whom people truly dislike, he claims he has AS as a way of not taking responsibility for his actions. 

I get really tired of trying to educate people that people with AS are not necessarily people who have no social skills. Perhaps Cohen is confusing AS with classical autism, where a person cannot communicate with others, and may appear to have no social skills. In fact he apparently referred to himself as "Rain Man" in several articles. Cohen obviously doesn't know that the character in "Rain Man" was an autistic savant, not someone with Aspergers Syndrome. 

Regardless of how autism or AS affects a person, a diagnosis is not an excuse for poor behavior. Autism or AS may explain how a person's perception of reality can prevent them from understanding certain social situations, however it is not an excuse for a person to act like an asshole and say he has an autistic spectrum disorder. 

I have read Bram Cohen's weblog. He is not the sort of person I would want to meet or be in contact with. I am sure he is brillant and much smarter then I am. But the fact that he claims to have AS as an excuse says more about him being an asshole then the fact he founded a company that drove the music and film industries into the ground. I'm sure everyone who makes their living creatively thanks Bram Cohen for that discovery. 

Best Chicken Ever update 10-19-2008

In this update I will be providing you with a recipe to make the best chicken ever. 

You will need:

Chicken Breast

Soy Sauce

Garlic, fresh or prepackaged

Place the chicken breasts on a baking sheet. Drizzle soy sauce on them to taste. Add garlic to taste. Turn them over, repeat. 

Cook in a broiler or on a grill. Make sure the broiler is hot. Cook for around 5 to 7 minutes per side depending on how thick the chicken breasts are. 

Remove and eat. I am sure you will agree, it is the best chicken ever. And if it's not, then sue me. 

You can't win them all update 10-19-2008

The Red Sox lost.

They made it interesting, but in the end, as in the regular season, Tampa Bay was a bit too much for us.

Congrats to Tampa Bay. You have a great young team and a tremendous manager. 

Thank you, Red Sox. No matter what, I support you as a team and as individuals. It would be nice if we had won, but you can't win them all, and we certainly have won our share in recent years. 

We will be back next year stronger and more resolved then ever to bring home a World Series trophy to Boston. 

In the meantime I take solice in the fact that the Yankees did not even make the playoffs. Hank Steinbrenner, et al, kish mir om tuchis. 

I'll be rooting for Philly.

Glorious Red Sox Win Update October 16th 2008

What an absolutely perfect way to end what turned into a great day - Never Underestimate The Heart of a Champion!!! Sox win, we're going back to Tampa and we're going to the Series!!!

OK, let me come down now and tell you about what's been going on.

Today was a truly great day, for many reasons. First, I feel better then I have in a long time, probably since I got back from New Jersey in August. It seems as though my body has begun to adjust to the Standostatin and so I will be going up again on the dose this weekend. I'll skip chemo this coming week to focus on getting on a regular dose of Standostatin, and then have chemo again a week from this Monday. 

I was able to get out today and enjoy the weather and the outdoors. I went to Santa Monica and had a great time window shopping and having lunch. I am going to try to get out again tomorrow. 

This disease has made me realize that the little things I used to take for granted are in fact a huge deal, and those things I thought were really important are not so important. 

There is a Yiddish story about a man who goes to see his rabbi. "Rabbi, you must help me," the man said. "I cannot live in my house anymore. I have my wife, my two daughters, and my oldest daughter's husband living in a one room house. I haven't any room to breathe!"

The rabbi paused for a moment. "Do you have chickens?" he asked the man. 

"Why, yes," said the man.

"Bring them into your house," the rabbi said. "Come back again tomorrow."

The next day, the man returned.

"I don't mean to question your judgement, rabbi," said the man, "but your advice, I don't understand. Now I have feathers all over my house. This morning I was awakened before the sun came up by a rooster next to my bed! I have less room then before! Tell me, whatever shall I do?"

"Do you have goats?" the rabbi asked.

"Yes, three of them," said the man.

"Bring them into your house."

"But rabbi - "

"Did you not come to me for counsel? Bring them into your house! Come back again tomorrow."

The next day, the man was back.

"Rabbi, this is impossible, I can't take it anymore!"

The rabbi looked the man in the eye.

"Put the goats and the chickens out of your house. Do it as soon as you can."

Again, the man returned the following day, with a big grin on his face.

"Rabbi, rabbi, you are so wise! Now I have all the room I need! No more goats, no more feathers. Just my wife, my daughters, and my daughter's husband. My house is now a paradise!"

Monday Morning Update 10-13-2008

So I am sitting in front of my computer with the tv on in the background. A massive fire is burning in Lakeview Terrace. And all over the tech gossip websites, it's bad news: layoffs, companies shutting down, venture capital being withheld, and in some cases, outright investment fraud. Lots of pessimism and not a particularly good way to start the week. In regards to the financial crisis, I can't help thinking that the more bad news there is, the more bad news there will be. I don't know if there is a benefit from starting a panic, but it seems like a lot of stars are aligned to get people feeling nervous and uneasy. And since financial panics are as much psychological as they are actually financially based, I think the extensive coverage of this only makes it worse. I don't want to sound like a conspiracy theorist, but someone or something is benefiting from this. 

As far as the fire goes, its Santa Ana wind time here in Los Angeles, which means dry, hot, windy weather, perfect for fires. And if this recent fire is any indication, it's going to be a hard few days. Get your dust masks on and break out the resperators...

I am going to post a medical update later on today. Better for you to read this blog then some of the other gloom and doom blogs out there... 

earling morning update october 7th 2008

SOX WIN!

SOX WIN!

SOX WIN!

SOX WIN!

And if you have to ask which Sox (Red or White) you haven't been paying attention.

Over the past few days, it has struck me that the Red Sox winning has become a very important thing. Oh, I always enjoyed a report of seeing a win, or even better, watching a win on TV. But since it was pretty clear from mid summer the Sox would either win the AL East or get the Wild Card, the day to day progress of the Sox was less of a priority then dealing with my normal day to day things.

As of Sunday, that has changed. 

I really, really, really want and need the Sox to win. 

I don't know what changed. Sitting in chemo yesterday, I started listening to the soundtrack from "Fever Pitch" (the chick flick from a few years ago which featured an obsessed Red Sox fan and the Sox first World Series win since 1918) and realized that the Sox winning last night's game had suddenly became very important to me. 

It has become very important to me that they beat Tampa Bay, which will not be easy. The Rays are a great team and were so evenly matched against us during the regular season. I would not be surprised if the series went 7 games. 

It's not Yankees Red Sox, but it's close. And it will be fun. I can't wait for Friday. 

Post Chemo Update October 6th 2008

The original point of this blog was to keep my family and friends up to date regarding my medical progress; hence the name of the blog. I realize that actual medical progress blogs have been few and far between these days. In keeping with the original spirit and intent of this blog, what follows is an actual medical update. Please note the time and date. Who knows when this might come again.

I had chemo today. This has been my fourth round of chemo in a row since I began again and the longest I have gone consistently; in other words, I would have skipped a round by now. In total I have had 12 rounds of chemo since beginning April First. I should have 16 but I skipped two rounds for David's wedding and skipped another two rounds to go back for Scott's funeral. On Wednesday I will be meeting with the oncologist, along with Dad and David, and and that time I hope to figure out what is going to happen next. Ideally, I would be on a higher dose of Standostatin by now, but my body can't handle the increase so I am still stuck on small daily doses. There are two aspects to my disease. One is the actual tumor itself, which is a neuroendocine, carcinoid tumor, well differentiated, located in my prescaral area (between my tailbone and my rectum). This is a slow growing tumor and by itself will not kill me right now (from what I understand), but does cause me complications and will kill me in the end. The second aspect is the cancer which has spread to my liver and bone which is of immediate concern and why I am having chemo. From the research I have done, what kills people with this type of tumor is not the tumor itself, but the liver cancer and/or the bone cancer. It is far more likely that I will die of hepatic shock due to the cancer in my liver then I would from the tumor itself. The treatment for this is aggressive chemotherapy, followed by more chemotherapy. Ideally at some point I could at least stop the chemo for a while. I don't know if that is possible, from the research I've done. If the cancer in my liver can be controlled, perhaps a break might be possible for a short while; a year perhaps. But again from the research I've done, some form of chemo is going to be in my future for the rest of my life. 

As you know, I hate chemo. I hate it even when I have no symptoms, like today. I hate every aspect about it. And I hate the fact that I have had to put my life on hold. I have not worked since January, and tomorrow I had hoped to be on a plane to New York for a vacation. That is not possible now since I really need to focus on treatment. The prospect of having to have regular chemo treatment for the rest of my life is daunting and discouraging, to say the least. I keep saying that at some point, I am going to tell the doctor I don't want to continue any more. But, I know that would lead to a lot of pain, and eventually, dying, which is not an option for me right now. So I am stuck. I hate this but it's going to keep me alive. I hope that perhaps there is a third option. I haven't gotten the impression there is. Right now, I am committed to continuing with this course of treatment. I don't know how I will feel tomorrow, but that is how I feel right now. It helps, of course, that I feel generally OK and don't feel sick. When I feel sick is when I get discouraged. 

I am saying this out loud because sometimes I get frustrated and say things that give an impression that stopping treatment is some how an option for me, with the eventual result. As you can imagine this causes a lot of grief for my family and friends. Causing any more pain for my family and friends is the last thing I want to do. I have always said I think it is harder for someone to watch this then to go through it yourself. I know when I say I want to stop treatment, it makes it even worse, because that means I would be choosing to die. I don't want to die, but I do need and want some sort of option that will make this easier to live with. Sometimes, I get so frustrated, I do want to die, but that always passes quickly. I don't really want to die, and honestly, if I was going to do that, I would have done it already. Clearly I have neither the desire nor the balls to make that particular decision. I just want to do this in a more efficient, less painful way. 

OK, that was a long ass post... the Red Sox are up two going into the 8th, but I can't watch the game because Time Warner cable has an outage here... so I am forced to listen to it on the radio and online. GO SOX!!

I love you all. 

Money Grubbing Update

Today I read a blog from someone who is beginning a start-up business but since she can't get a loan through conventional means put up on her blog a request for her readers to donate $25k. There is no details on what the start-up is. The only thing she says is that for each person who donates money, she will consider it a favor which she will have to repay. As an aside, she is extremely attractive. But that's neither here nor there. 

This got me to thinking - I have a blog, I have readers, why not do the same thing?

So, I am asking you, dear readers, to send me money. I am starting low - $5k rather then $25k. It's for my new start-up: The Send Ben to BestBuy fund. 

For each dollar you donate, I promise to spend it on something I want, and tell you about it. 

I will consider it a favor if you send me money. Someday I will do you a favor. Restrictions will apply. 

You can contact me via my blog if you are interested and I'll give you details. Mom and Dad, you've got my bank account info - no need to contact me; just put your donation in. 

Thank you and good night now. 

Baseball end of season update

I am a Red Sox fan. This means that I also hate the Yankees. The two are synonymous. I am sure the reverse is also true. It gives me great pleasure to know that the Yankees will have to watch the baseball post-season from the sidelines. I hope that Yankee fans are experiencing upset stomachs from the fact that their team will not play past today. I once heard a joke that goes, "What do Yankee fans use for birth control? Their personalities." Break out the Tums and Rolaids, Hank Steinbrenner. You spent over a quarter of a billion dollars on a team that finished behind not only the Red Sox, but Tampa Bay! Hank Steinbrenner is a no class bum who should keep his bombastic mouth shut. His recent comments regarding the Dodgers and the omission of Joe Torre during the video tribute to Yankee Stadium shows Hank's true colors. He was born on third base but thinks he hit a triple. Hank, you aren't half the owner or man your father is. Here's hoping you end up with a bad case of stomach upset and the runs. Both you and your fans can kish mir om tushis all day and all night.

Go Sox. 

Oh, one more thing - much respect to the New York Mets for their choke job. Two years in a row. Guess it's not the manager, huh? Here's a thought on how to make things right... a fish stinks from the head. Look upward. Fire your GM! At least you won't have to play in that toilet known as Shea Stadium anymore... 

My cousins Scott and Sari are both Mets fans. I don't mean to disrespect either of you by writing the above. It's good to be a fan and have passion. It's far better, however, to be a Red Sox fan right about now...

mid morning addendum september 27 2008

My condolences to the family and friends of Paul Newman, who died this morning from cancer. Ironically I was watching Butch Cassidy & the Sundance Kid on cable this morning and wondering how he was doing... now I just read that he passed. Two of my all time favorite movies are The Sting and Butch Cassidy...

early morning update september 27 2008

It's been a hard week for me in a lot of ways. I had a horrid bout of constipation followed by an even more horrid bout of diarrhea. This put me out of commission for around 2 days. I am on so many medications; medications to move my bowels, medications to stop me from moving my bowels. Anti-anxiety medications, anti-depressants. Pain killers. Sleep aids. Standostatin. My body doesn't know which way is up. I had a very restless, dream filled night, which is why I am writing this update at 5 am on a Saturday. Add the ongoing stress of chemo and just plain living with cancer and both my body and mind are hanging on by the skin of their teeth. I need a break. I don't expect I'll get one though... 

This I had to post

Man charged after allegedly passing gas toward cop

Wednesday, September 24, 2008

(09-24) 18:52 PDT South Charleston, W.Va. (AP) --

A West Virginia man who police said passed gas and fanned it toward a patrolman has been charged with battery on a police officer.

Jose A. Cruz, 34, of Clarksburg, was pulled over early Tuesday for driving without headlights, police said. According to the criminal complaint, Cruz smelled of alcohol, had slurred speech and failed three field sobriety tests before he was handcuffed and taken to a police station for a breathalyzer test.

As Patrolman T.E. Parsons prepared the machine, Cruz scooted his chair toward Parsons, lifted his leg and "passed gas loudly," the complaint said.

Cruz, according to complaint, then fanned the gas toward the officer.

"The gas was very odorous and created contact of an insulting or provoking nature with Patrolman Parsons," the complaint alleged.

He was also charged with driving under the influence, driving without headlights and two counts of obstruction.

Cruz acknowledged passing gas, but said he didn't move his chair toward the officer nor aim gas at the patrolman. He said he had an upset stomach at the time, but police denied his request to go to the bathroom when he first arrived at the station.

"I couldn't hold it no more," he said.

He also denied being drunk and uncooperative as the police complaint alleged. He added he was upset at being prepared for a breathalyzer test while having an asthma attack. The police statement said he later resisted being secured for a trip to a hospital that he requested for asthma treatment.

Cruz said the officers thought the gas incident was funny when it happened and laughed about it with him.

"This is ridiculous," he said. "I could be facing time."

http://sfgate.com/cgi-bin/article.cgi?f=/n/a/2008/09/24/national/a172444D31.DTL

Update - September 15

So it's been a while since I updated. First, let me tell you all I feel much, much better, physically, mentally, and spiritually. I had very little side effects from my last chemo round, and although my body still does not like the standostatin much I am managing, with the help of Imodium.

Usually when I go this long without updating, it takes something to get me to sit down and write. While looking through my favorite tech/geek gossip website I came across something that got my interest - "lifecasting." This apparently is where people upload video of themselves 24 hours a day - and not only do people watch, but they also pay money for it. From what I understand, this is not porn. That concept I get people would want to pay for, and watch. These are simply very attractive people who video their every move and put it on their website. It caught my interest because, as we speak, these folks are moving into a mid four figure monthly rental live/work space in Manhattan, "Which needs to be unique as we will be filming quite a bit." 

I am quite confident that none of you would want to see my 'lifecast.' I am also quite sure none of you would pay me for the privilege of watching my every move (in fact, some of you would pay NOT to watch it). I think this is a case of technology and celebrity culture run amok. Just because you can broadcast your life every moment does not mean you should. Just because you happen to be more attractive then 99 percent of the population does not mean people should pay to watch you brush your hair. Where do we go from here? We are a vouyeristic culture, and I am guilty of it as anyone else (I was reading a gossip site, after all; even if it was tech/business related). Some things are supposed to be private... or is it that if I can charge for it, it's OK for you to watch?

More Cheerful Update Sunday Sep. 7 2008

This is going to be a much more cheerful, hopeful, normal update then the last one. I am pleased to say I feel much better emotionally. There is nothing particular which happened that turned me around. I just don't feel as hopeless. 

I will be going in for chemo tomorrow. 

Update September 5th 2008

This is not going to be a sweetness and light post. In fact, I would prefer not to communicate in any form at the moment except that I know that if I don't put out how I feel it will fester and grow ugly inside me. 

I have never felt so hopeless since I began this journey eight months ago. Nothing specific has happened in terms of what the doctor has told me. I just began a course of standostatin which is designed to control my primary tumor. The shots make my stomach upset and gives me diarrhea. I feel worse when I get treatment (chemo, etc.) then when I don't, and I see no light at the end of the tunnel. No one yet has been able to tell me when I can go back to work, or even stop doing chemo treatments. Everything the doctor gives me makes me sick. 

I am not sure what I am going to do. I am in the process of trying to get a second opinion through a medical organization not affiliated with my doctor or hospital, so they can look at me with fresh eyes. That doesn't really affect how I feel right now. 

I want to give up and stop everything. I am not sure if I even want to live any more. Everything seems too hard. I don't want to talk to anyone including my family. I have thought seriously about checking myself into a mental hospital as I feel as though I am losing my mind. I know you all have wonderful advice to give and want to be supportive, but I don't really want to hear what you have to say right now. I was going to block comments from this post, but that goes against the whole idea of this blog. I don't believe anyone can say anything that will make me feel better. I am not sure what I am going to do. I don't know if I can do anything that will make this go away. I have said that the day I lose my sense of humor is the day that they will put me in the ground. I am close to losing my sense of humor; in fact I don't think I have it anymore. I am tired of being sick in order to supposedly live longer. I don't think it's worth it anymore. Living five or ten years longer really isn't that big a deal to me right now if in order to achieve it I have to be sick. 

Coast to Coast Update

When last I updated this blog, I spoke about losing my cousin Scott unexpectedly. That was Tuesday around 11am. The next morning I was on a plane to New Jersey with my father for the funeral and to sit shivah with my aunt and cousin. Naturally because of my cancer I was worried about the effect a long distance plane trip would have on me. Fortunately, I was able to get through it for the most part, with the exception of when we arrived in St Louis on a layover and I had to walk around to find something to eat (St Louis is a horrid airport. I hope to never go through there again) and ended up taking half a vycodyn for the next leg of our trip. It was quite wonderful to see my family, although the occasion was a hard one. By far the best experience for me was to spend time with my father, hear him tell stories about his childhood and family, and to connect with him on a deeper level then I have been able to do before. That alone was well worth the trip.

After flying back and spending two nights at home, once again I hit the road, this time for my stepfather's 80th birthday celebration in San Francisco. This was a hard weekend for me healthwise because I really felt tired and couldn't really take advantage of the beautiful weather we had. I spent most of the time in the hotel room sleeping. The times I did spend with my family were wonderful, particularly Friday evening when we went over to David and Maggie's house for dinner. I really enjoy seeing them and being able to have our family together.

I know I am being general in terms of the details of the trips. Truly there is so much to say and so many emotions I felt spending time with both of my families. I am extremely lucky to have two groups of family who I love so much.

August 12 Update

My beloved cousin Scott Yates passed away last night from a heart attack. Scott and I were so similar it was like looking into a mirror; almost uncomfortable. We had a kind of mind meld that we both appreciated. I called him 'my brother from another mother.' I love him so much and I am incredibly sad he is gone.

Post Chemo Update Monday August 4th

I feel good, generally speaking. Much better then the previous attempts where I was getting sick almost as soon as I was finished. I did receive steroids as well as valium through the IV so that made a difference.

I'll post more later.

Six Month Update: July 31, 2008

Six months ago I was first told I had a tumor in my presacral area. (Today also happens to be my 39 1/2 birthday... six months to 40!). I think back to New Years Eve at a friend's party when I was completely unaware of the darkness living in my body, other then a realization that I was in a lot of physical pain. That was not unusual, however, so it didn't differentiate itself much to me. I often wish I could go back and be unaware and oblvious to what I know too well now.

This six months, without a doubt, have been the toughest time of my life. I don't have much good to say about them; if I had a chance I would certainly re-write the script and what I have experienced these last six months would not be included.

However, I have been blessed in many ways. In particular, the relationship I have with my Dad John has been completely transformed. Unfortunately, we both have a lot of physical problems in common, but our pain has allowed us to communicate to each other in a way that not a lot of people can understand - each of us understands what the other is going through, in a way. I feel closer to my Dad then I ever have before. For many years, both of us had issues communicating with the other, and there was a lot of resentment, at least on my part. The blessing is that I don't feel that way anymore.

The relationships I have with my entire family have changed. David and I have become better brothers and friends. My Father Mark continues to amaze me with his wisdom and love. He is by far the smartest person I know, much smarter then me, and that's saying something : ) I find we are very alike, scarily similar in many ways. He has gone through a lot and has the wisdom and scars to prove it.

Watching my Mom go through this with me has been very hard, because I know how powerless she is and how much it hurts her to see me in pain. I think it's easier to go through this then to watch it, because at least if you're going through it, you know how it feels. My Mom can only watch and hear me bitch about things.

So, I am blessed with wonderful family and friends whom I appreciate more then ever. But when it comes down to it, I'm the one who gets to go through it. No one else can do it for me, unfortunately. I don't know what the next six months will hold. Regardless, you will hear about it here.

Sunday 7-27 update

Sorry I haven't updated this sooner. I guess the good news is that I feel relatively ok... I have not gotten nauseous this time around which was my major complaint the last few times, so that is good. I have been very tired. Over all, though, I can certainly tolerate this. I began taking standozstatin last week. This is a self-administered (shot) hormone designed to deal with my primary tumor and is one of the foundations of treatment for this kind of cancer. Eventually the majority of my treatment will be self-adminstered and done monthly or bi-monthly rather then weekly or bi-weekly as it is now.

Tuesday Post Chemo Update

I had the new, revamped chemo protocol yesterday, and I am pleased to say I have not been sick. I am tired and my skin hurts. My stomach hurts a little but no vomiting, which was my major concern. I can live with this. Tomorrow I will go in to have a dose of StandoStatin, which is a hormone treatment for my primary tumor. Eventually this will be self-administered once a month. The whole direction the treatment is moving toward is doing as much of the treatment at home self-administered rather then me spending several days at the doctors office.

Tuesday Night Update

As I mentioned in my last blog entry, I've been listening to Alan Cross' "History of Alternative Rock." It's reminded me of many albums, groups, and songs from my history which I've put aside; I have their music but I rarely listen to it actively anymore. The history's section on U2 got me listening to their music again, particularly the album "The Joshua Tree."

I've always been a U2 fan; not to the extent that I loved Springsteen (well, that love was a bit disturbed, to be honest. At one point in my life, I actually thought Springsteen was God's incarnate representative on Earth. But that is another story for another time.) but I was definitely a fan. In fact, I am probably one of the few people that saw them in completely different venues as they made their way to stardom: I saw them at the Hollywood Palladium, the Long Beach Arena, the Sports Arena, and the Coliseum, on their various tours of America. I clearly remember hearing "Where The Streets Have No Name" for the first time and being absolutely exhilarated. As I grew up and my musical tastes changed and morphed, I think I began taking their music for granted. I listened less and less and relied on my memory instead of actually putting their albums on.

I put The Joshua Tree on for the first time in a while today. The music hit me hard, and I remembered why I became a U2 fan. I couldn't believe how incredibly powerful the music is, even 21 years on. Listening to "Running To Stand Still" on the bus this afternoon, I nearly broke out in tears. I guess I never really heard the lyrics, or, more likely, my life experience has changed my perception of them and the emotion they elicit from me.

Music is incredibly important to me; it always has been. It is as important as food, water, and air. It connects me with others, and connects me with my Higher Power, God. I am blessed to have experienced the wonderful creativity of the bands who make me smile and cry.

Monday Night Update

I get in these funks where I don't really want to write or update the blog. I know you all want to know how I am feeling, what I am doing, am I sick, etc. Sometimes, I just don't have much to say; it's all pretty much the same. I go back in for chemo next Monday, so I am off for the rest of this week. I am hoping to get out some now that it seems to have cooled off and the humidity here is back to normal.

I will say that I have been listening to an amazing history of Alternative Rock by Alan Cross. I highly recommend it. Supposedly there are three volumes; I found volumes one and two on ITunes but no luck finding volume 3.

Thursday Update

Sorry it's been a while since I updated. I met with the doctor Tuesday along with a chemotherapy pharmacist to try to figure out why I got so sick so quickly during my treatment Monday. Basically, they think I have 'anticipatory nausea.' What this means is that my brain is anticipating a reaction and then I have one. The way they treat it is to give me IV Xanex and a very small amount of steroids just before the treatment, and supposedly that will calm down my head. It is, of course, possible I could get sick anyway (I do have a genetic issue with one of the drugs after all), and if that is the case, they won't treat me with that particular drug any more. So we will see. I go back on the 21st.

Chemo Update - Monday 7/7

There were some problems today. As you know, the doctor adjusted the protocol in the hopes of preventing me from getting sick. Normally I would get four chemo drugs: Avastin, Lucovorin, Oxcyloplatin and 5Fu (forgive me if I spelled the names wrong; it's not like most of you would know anyway). I have a genetic sensitivity to the 5Fu so instead of giving me the standard dose I get about 30 percent of that; very small, in other words. This time around I did not get oxcyloplatin since we thought that was what was making me sick; and it is the drug that produces other side effects such as neuropathy (loss of sensation in the hands) and sensitivity to cold. This time, when the 5Fu was being administered, I got sick immediately and fairly violently. So, right now the treatment has stopped while the doctor tries to figure out how to treat me without me getting sick. I will see him tomorrow and hopefully he will have a game plan as to how to move forward.

Sunday Night Update

First of all, your eyes are not deceiving you; I changed the format and layout of the blog. Do you like it? Prefer the old layout better? Let me know, please.

Tomorrow I go in for another chemo round. I am finding it difficult to get myself to lay down and sleep. I will admit I am nervous and scared about the outcome. I know that the doctor and everyone is doing everything they can to help me not be sick. That still doesn't comfort me, as I can't get the feeling of nausea out of my mind.

I spent a very nice afternoon with family and friend Melissa at the musical "Wicked" at the Pantages Theater in Hollywood. I enjoyed the show; the staging was excellent and the cast was great. We went to dinner afterwards and had a very nice time together. As a result of a bet between Melissa and myself, I now owe her a homecooked meal of her choice (I said that Kristin Chenoweth was in the Broadway cast of The Producers as Ula; it was actually Cady Huffman). I hope you don't get ptomaine poisoning after eating my meal, Mellisa : )

I'll try to update tomorrow, depending on how I feel.

My Morning So Far

Awoke to find my toilet completely plugged and unable to flush. This situation has become all too common these days as the various drugs I take affect my bowel habits and unfortunately the toilet is a low flush model which is not very effective for dealing with someone on chemotherapy. I didn't want to call a plumber since I just called one in last week and every time they come out it costs me around $60 bucks for a five minute job (my apartment building management will no longer pay to unclog my toilet as the clog is not a result of bad plumbing but rather excessive waste). So I went online and looked up ways to unplug a toilet. One of the recommendations was to fill the bowl up with water as fast as possible without overflowing it; and you know, it actually worked. Cool, huh? However, as I went to fill up my bucket with water from my bathtub, a large Jerusalem Cricket appeared at one end of the tub. For those not familliar with these types of crickets, they look like a large cockroach. Disgusting. I sent it to cricket heaven with a mop and lysol.

I hope the rest of my day is better.

ESPN's My Wish

All this week on ESPN's SportsCenter, children who have life threatening diseases are getting their sports wishes to come true, through the Make A Wish foundation. If you haven't had a chance to see these stories, you can watch them on SportsCenter or go to ESPN's website and view them on web video. They are inspiring. The Make A Wish foundation is an extremely worthy organization which gives children who have diseases such as cancer an opportunity to live out their wishes. If you are in a position to make a donation, please do so; or if you can donate time or resources, please consider doing that.

Recomendation: Lenny Bruce is OUT again

Just downloaded this amazing Lenny Bruce album from ITunes... I am not sure if it is from one show (I doubt it since every track is a classic; it's probably a compilation); for $10 it's absolutely worth getting your hands on.

Lenny Bruce speaks the truth, and he makes me laugh my ass off.

Sunday Update

Yesterday I went to a party at one of my co-workers. It was nice to be out and to see people I know, but I was really tired and I ended up leaving early. I took the subway home from North Hollywood. I was amazed at how many people were on the train at 9pm and how much street traffic there was in my neighborhood. I think the street was more crowded at 10:30 then during the day. Living in an urban area (urban for Los Angeles anyway) is one of the most attractive aspects of my neighborhood; however I was also reminded that I really am a foreigner here. Almost all of the street traffic was either in Korean or Spanish. I forget that I am a minority.

Late Night Update

As I was randomly surfing the 'net I happened to come across a page featuring my old parliamentary debate coach. While I have some fond memories of my time debating, I was going through a lot of personal turmoil as well. I wasn't as socially apt as I am now, and there were some misunderstandings. We did not part on the best of terms. What amazed me is how quickly my mind took me right back to those days, with all the shame and resentment I still hold coming to the forefront. Instead of the person I am now, a person whom I like and accept and am proud of, I became that other person, shame-filled, angry, bitter. As though the person I am now never existed.

My photographic memory is both a gift and a curse. I remember everything; there is no filter. And much of what I remember, I would like to forget.

Here's the thing - I doubt he even remembers me. He certainly doesn't think about me, or if he does, he doesn't have the visceral reaction to his name that I had. Many of the people whom I still hold resentments against - my ex girlfriend, people I went to high school with, bosses I had in the past - I am sure they have moved on. I, on the other hand, still am filled with shame and anger which never was resolved and never has quite gone away.

Perhaps - perhaps this resentment is physically manifested in my tumor. I can't afford to have resentment at all; unresolved anger is a killer, along with regret. So perhaps my inability to forgive and forget stayed with me, and as I learn how to forgive and forget the tumor will shrink away. I don't want to be angry for things that happened decades ago, or to be angry at people who don't care enough about me that it would even matter to them. I like the person I am now. I feel proud to show him to the world. Maybe one day I can accept the past me in the same way.

Thursday Morning Update

I'm feeling much much better today. This is the longest its taken for me to recover from a chemo treatment and so I will be taking an extra week off so that my body can completely heal.

I saw on the news today that a single mother of two in Palm Beach Florida is auctioning her house and herself as a bride on e-bay... that is kind of frightening to me. I'm not sure if I would ever get that desperate to find a mate. You have to really question someones motives in that situation... she's not that bad looking, I am surprised she hasn't been able to find someone in a more conventional manner. I'd definitely be doing some background checks before we went on a date!

Latest Cancer Update

After a CAT scan yesterday, my parents and I had a meeting with Dr. Nassir, my oncologist. Basically, my disease is stable. The tumor has not grown but also has not shrunk. The spots in my lungs have disappeared, but there is a question if they were actually cancerous in the first place, or just the result of the asthma I've had all my life. While the radiologist did not comment specifically on the spots in my liver or in my bone, the oncologist believes both are stable. Because I have cysts on my liver, it is hard to get a true reading of the spots; but after some additional consultation with the radiologist, I was advised the spots are still visible, but stable.

So, things are stable, which is a good thing. The next step in treatment will be to modify the protocol so that I don't get so sick, and move me from an active, full time treatment to more of a maintenance regime. We are looking at another six cycles of chemo, or about three months. Hopefully by that time most of what I need can be accomplished either by shots self administered and by pills. Ideally I would be looking to go back to work in the fall, or, at least that is what we are all shooting for.

We had a very good meeting. I feel like we are all on the same page, and that we have the same goals, which are to continue treatment with as little side effects as possible and move toward a maintenance program at the end of the six cycles.

Perspective

There is an article in this week's LA Weekly about a street kid named Raven. She was found strangled, her body dumped in an alley in the back of a Hollywood mini-mall, wrapped in a cheap bedcover stolen from a one-hour motel not far away. She was fifteen years old. Her alleged murderer, a convicted sex offender who had been out of state prison less then a week, is now on trial in Downtown L.A. criminal court.

No matter how bad chemo is, my life is far better then anything Raven or the others like her will ever experience. I need to remember that compared to most people my life is cupcakes.

Thursday PM Update - This &*%king Sucks!!!

I am sick. This is the worst reaction that I have had to chemo so far and I am NOT pleased, nor happy. The doctor plans to make additional adjustments so hopefully this does not occur again. There really isn't that much else to say at this point.

Tuesday PM Update

This round of chemo was the hardest so far. I was sick before I left the doctor's office and was vomiting pretty much regularly all night. I got into bed at around 3pm and didn't get out of bed until around 4 the next morning. The oncologist is concerned. He has already made some adjustments in my chemo protocol and will make additional adjustments, all in the hopes of preventing me from being sick. I have a CAT scan scheduled for Monday...

Sunday Update

I start chemotherapy treatment again tomorrow morning. I can't say I am looking forward to it after five weeks of going without it. However, since the oncologist lowered some of the protocol I might not react as badly. We'll see.

What I would like to believe is that tomorrow is the beginning of the end; that the marker tests and scans will show a marked improvement in my condition; and that I can begin to consider resuming normal life once again. That is my hope and wish, anyway. I have come down completely from the high of last weekend, but last weekend also made me realize the possibilities life holds for me once my treatment is finished. I am going to try to hold on to that goal and vision as I go forward.

Saturday Night Update

Went out and saw "Indiana Jones & The Kingdom of the Crystal Skull" today. It didn't knock me out. I'm kind of shocked to say this, but I think the second "National Treasure" movie compares favorably... there were some nice moments, some decent laugh-out-loud moments, but far too few for a $12 film... I am disapointed. Sorry, Steven, George, Harrison and Frank, I wish I could give you a better review, but you did get my cash, along with ArcLight, so you'll have to be satisfied with that.

Friday Update

As some of you might know today is the anniversary of my stepmother's death from cancer. I won't pretend that she and I were particularly close, however her fight against cancer inspires me to also fight. She meant a lot to my father and family, who I love very much. I wish that there would be something I could do to ease the pain for them today, but there isn't. I hope she is in a better place and at peace.

"Let me tell you the truth. What is, IS. And what should be is fantasy, a terrible lie; which was given to the people long ago."

Lenny Bruce

Tuesday Update

As I readjust to being home and come down off of the high of the past weekend, I have begun to fear that the transformation I spoke about in my last post may be harder to sustain then I believed.

I am once again back at home, alone, going through my daily routine. After a weekend with such emotional highs for me it has been hard to be by myself and once again face the fact that next Monday I will start chemo again.

I have felt sad and lonely today, longing for the emotional connections that I received this weekend on a regular basis. I realize that I still have a long way to go before I achieve many of my goals. I still tend to isolate myself out of habit and what came so naturally to me over the weekend has become more difficult as I returned to my familiar environment.

This is a hard post for me to write. I started to write this in the morning and couldn't finish. I find myself censoring my words and not wanting to share with you my deep sadness at being alone again when I really am longing for some sort of partner in my life.

I never used to feel lonely; I prefered being by myself. Obviously something has happened to me that now moves me to want and crave connections with people in a new way. It is a hard thing to understand; I am observing myself and my life motivations change and it is both scary and wonderful.

Post Wedding Update

I just got back from my brother David's wedding. Many of you who read this blog on a regular basis were there so you know what an extraordinary event it was. For me, it was a transformational experience. Some of you know my struggles with Aspergers Syndrome and my desire to fit in socially. This weekend, I felt for the first time truly free to be who I am with no fear of being rejected. I saw myself talking and being socially involved totally and completely in a way and in a context that was new and wonderful. I can't really put it into words for people who do not have AS or struggle socially. But for me, I feel like I grew up - I've become a real adult with the possibility of having real, honest, social relationships. I am sure it's hard to relate to what I am saying. Those of you who know me well will understand.

To all of the new friends I met who might be reading this blog for the first time, it was a real pleasure to connect with you and I hope to continue to get to know you. To those friends and family who I saw again, what a wonderful time I had with all of you celebrating Maggie and David's new life together. The memories I have will last for a long time.

Back to the subject at hand - cancer and my recovery from it. Although I did some things I shouldn't have, such as dance way too much, overall I wasn't in pain, and when I was in pain I recovered quickly. If I was measuring my progress by lack of pain on a regular basis, I would have come very far. Before I left, the oncologist informed me that overall things look good and that the recent marker tests show good progress. I'll begin chemo again next Monday with a reduced chemical protocol which should make me less sick (knock on wood). At some point in the next few weeks I'll go in to have some MRI and CAT Scans done to see where we are, and my treatment will be adjusted accordingly. I am thinking positively and I know all of you are.

Although the trip was great, it's really nice to be home and be able to sleep in my own bed again, have regular cell phone and internet access, and watch tv : )

I need to go to Las Vegas

Was just reading a story in the Los Angeles Times about upcoming events in Sin City... I need to go to Las Vegas. However, based on my last trip there, I need to go back there like I need a second head.

The last time I went to Las Vegas, I lost quite a bit of money playing craps. I won some money, too. The problem with me is, I win and I keep playing, and I end up giving it all back and then some.

Ideally, if I must go to Las Vegas, I should go with someone who will stop me from playing once I win money, or at least, stop me from going into debt. I think that would be quite a job for anyone, though. Probably best if I stay away from there, unfortunately. I admit, I have a gambling problem... whenever I gamble, I go a little nuts. I can't even bet on a football pool at work because I find myself getting crazy with the results. It stops being fun. I guess that's the definition of an addiction... it stops being fun.

Still and all, I want to go to Las Vegas. Would anyone like to pay for my trip?

Friday May 30th Update

I know it's been a while since I last updated. It's funny; when I am sick I have a lot to say, but when I am feeling somewhat normal, I don't. I'm feeling good these days. I've been out and about a lot and seeing a lot of friends and family. My brother's wedding is next week and I'm looking forward to that. Basically, it's all good for me right now.

What I am listening to version 4.0

Horace Silver, "Doing The Thing: The Horace Silver Quartet Live at the Village Gate"
edIT:,"Certified Air Raid Material"
The Doors, "The Soft Parade"
Beastie Boys, "License to Ill"
Kid Creole & The Coconuts, "Off The Coast of Me"
Marlena Shaw, "California Soul"
The Rolling Stones, "Some Girls"
Ed Rec Records, "EdBanger Volume 2"
Simian Mobile Disco, "Attack Sustain Decay Release"
Thelonious Monk, "Live In Paris, Volumes 1 & 2"
ZZ Top, "Tres Hombres"
Anton Ellis, "Soul of Jamaica"
Molotov, "Donde Jugaran Las Ninas"

Saturday May 24th Update

It has been a wonderful past few days. I am getting a taste of what life will be like once I am done with chemo and I cannot wait. I have been seeing a lot of friends, going out to lunch and dinner and having a wonderful time. Last night some friends from (name of company deleted) and I went over to Busby's, a sports bar on Wilshire Blvd. to watch the Laker game. The place was packed and very loud and we had a lot of fun. The food, however, left much to be desired. I had perhaps the worst cheeseburger I've ever eaten. I couldn't even take three bites. I don't know what they did with it but it was horrid. Overall it was a lot of fun seeing friends and meeting new ones, and the Lakers blew the Spurs out, so that was great.

Tuesday PM Update

Today I went over to (name of company deleted) to see my co-workers and have lunch. It was so great seeing my teammates and friends again. I work for an amazing company that really cares about me and my well being. The co-founder of the company, (co-founder's name deleted), took time out of his schedule to say hello to me and to ask me if there is anything I needed. I really appreciate everyone's concern over there and that they made me feel like I am still a part of (name of company deleted) success, even though I haven't worked there since the end of January. I can't wait to go back and become part of the incredible future (name of company deleted) is creating for media and advertising.

On a sadder note, my sincere condolences to Ted Kennedy and his family.

On a brighter note, did anyone see my boy John Lester throw a no-hitter for the Boston Red Sox? Way to go, my friend. You inspire me... to come back from cancer and perform at such a high physical level is what I aspire to do myself.

Monday PM Update

Feeling somewhat stronger overall. Today I went to Nordstrom and bought shoes for the wedding, as well as a pair of dress casuals. There is a marked difference in the experience of buying shoes now that I have lost weight. I had a hard time with simply sitting and trying on shoes before. Now, obviously, it's much easier, and the interaction I have with salespeople is also quite different. I am so pleased with the way I look now. I wouldn't recommend this as a weight loss regime, but it is one of a number of silver linings.

Sunday Update

I am feeling much, much better; but still not 100 percent. This was by far the hardest cycle of chemo to go through. I got sicker then I ever have before. I can't tell you how glad I am that I have a month to recover before I have to go back and get more treatment.

Once I get back, I'll do one treatment and then go in for cat scans and MRI's to determine how the treatment is affecting the tumors. The pain in my ass is pretty much gone now, although I still feel it a little at the end of the day, but nowhere near what it was like previously where I couldn't even sit down or stand up without feeling pain. I suppose that means the treatment is working, but we'll see.

I have to tell you my (mis)adventures with medical marijuana : ) As you may know, I qualify as a cancer patient to buy pot legally and use it to relieve my pain and my chemo symptoms. My oncologist suggested I try it because many of my chemo symptoms (nausea, fatigue, loss of sensation in hands and feet, nerve damage, etc.) supposedly can be dealt with by the use of marijuana. On Monday after my chemo, my doctor and I had a frank conversation about how to use it and what he recommended. I then went over to one of the local "buyers cooperative" to purchase my "medicine." I bought some edible marijuana as that was recommended by both my doctor and the sellers (I have no experience smoking pot and in any case with my asthma I couldn't do it anyway). The marijuana came in the form of cookies and a brownie. It cost me about $20. I took half a cookie when I got home, on an empty stomach. Well, I got sick as a dog!! I mean, I barfed all over the place, and I was stoned too, so I couldn't even stand up : ) That was my first and last adventure with medical marijuana. Apparently my system is not set up for that sort of thing...

I've heard wonderful things about marijuana and how it relieved many people's symptoms when nothing else would. It doesn't do that for me : )

More later.

I think the worst is over

I feel better today. The worst of the nausea seems to have passed, and although my stomach is still not feeling completely normal and my energy level is very low, in general I feel more human. This has been an incredibly difficult stretch for me. I was feeling really good so going back and doing chemo was very hard, and then the sickness was by far the worst I've experienced. Fortunately, I won't be doing chemo until the second week in June, so I have a month to recover and get strong.

I know you want me to write more, but to be honest I don't have all that much to say; or, rather, I have a lot to say, but no energy to sit and write it all down. At some point I'll try to give you a more comprehensive update with more insight into what is going on inside my head, but today is not that day : )

Thursday May 15 Update

Sorry I haven't updated in a while. Quite frankly, I've been very sick; the hardest it's ever been after a chemo treatment; so I haven't really been up to updating. I don't have that much to say, except that I am really glad I get to go for a while without getting chemo so I can recover.

Saturday PM Update

I had a very good day today. People have been asking me if the pain I felt previously has gone away or subsided at all, and I haven't been able to give a definitive answer. Well, I can say that that I am feeling much, much less overall pain. A day like today proves it: First going to West Hollywood to run errands; then over to the Grove for a movie; then home. I couldn't even sit comfortably in a movie theater this time a month ago. Even when I saw "Shine A Light" at the beginning of April, I was still in some pain. That pain has gone away.

The movie I saw was "Speed Racer" and I liked it. Visually it's like nothing I've ever seen; I'd describe it as a live action cartoon, if that makes sense. Although the movie seems to be marketed to a family audience (and there were plenty of kids in the audience, unfortunately), this is most certainly NOT a kids movie. I was surprised at the cursing throughout the movie, as well as the overall violence. For the most part, I was pleasantly surprised and I recommend it. PLEASE don't take your kids. If you are going to take your kids, for pete's sake SHUT THEM UP!!! One child cried throughout the entire movie. I wanted to tell the parents, take your godforsaken child out of the theater so the rest of us can enjoy the movie in peace! I kept my mouth shut... I like and subscribe to the WC Fields view of children: "I like children; particularly female children between 18 and 22 years of age..."

Saturday Update

Had a really nice time yesterday with my Dad (John) buying clothes. I've lost a lot of weight so it's really nice to get clothes that fit me properly. When I got home, I reorganized my closet and took out a lot of my older, bigger clothes. The best part is I can fit into stuff that I haven't been able to fit in for quite a while. Although I still need to shop at a big & tall store, I won't be shopping there long... I am already at a normal size in my shirts and my pant size is not far away.

Today I will be running some errands and going to see the movie "Speed Racer" over at the Grove...

Friday AM Update

Yesterday I was pretty tired; I slept a lot. That seems to be the pattern; when I'm out and about for a few days as I have been this week, inevitably I need a day to catch up and sleep.

Today I am going out with my Dad (John) to go clothes shopping, which I am really looking forward to.

PM Update for Wednesday

Today was a really good day. I feel so strong and so much better. It is also really bittersweet, because in the back of my mind, I know I have to go have chemo Monday and I'm going to feel sick all over again. Believe me when I tell you I am tempted to simply not go back. Just the thought of it really makes me sick. I honestly don't know how I am going to go back in Monday. I know I will, but it's going to be really hard to do.

I went to Santa Monica today to the Barnes & Noble on the 3rd Street Promenade. My Aunt Vicki sent me a gift certificate, and even though there's a location closer to my house (Santa Monica is a good 15 miles and an hour bus ride away), I decided to venture out, and I'm glad I did. First, I got some really great books:

"This Is New York" by M. Sassak, a picture book about New York from my childhood; Universe Publishing did a reprint of the book last year. I'm going to try and collect all of his books, which I fondly remember reading over and over as a child and imagining the different places he traveled to and captured;

"Slavery by Another Name" by Douglas A. Blackmon: A book detailing the forced labor situation in the American South between the Civil War and World War Two. Very chilling; combine Southern racism and Northern indifference and millions of black men were enslaved by an organized, government sanctioned, big business supported system of forced labor;

And the best for last:

"Transit Maps of the World" by Mark Ovenden. A collection of every transit system's map from across the world; from London to Tokyo and in between. My dream book. I've wanted a book like this since I was a little boy. When I saw this on the shelf, my first reaction was "No Way!" I could spend the whole day with my nose in this book, going over the maps and tracing them in my mind.

The weather in Santa Monica was overcast but not too cold. There were a lot of mothers with children in strollers. I had lunch on the Promenade and really enjoyed it. On a personal note, I think I looked pretty good in a sweater I haven't been able to properly fit in to for quite a while. I don't know exactly how much weight I've lost, but it's gotta be close to 140 pounds now since August.

Tuesday PM Update

Today was a good day. I felt good for most of it; no nausea and the fatigue is a little better. I even had a regular bowel movement. I'm beginning to get used to the neuropothy, although it's still a weird sensation.

Today I had a nice conversation with my cousin, Alison. As we were talking, I started to tell her how I had come to accept the fact that, despite all of the best efforts, this cancer could still kill me. This is a pretty macabre subject for anyone, but I think particularly so for family and friends. I think it's harder for someone to watch this then to be the one who actually goes though it, although going through it is no walk in the park either. The point is, I don't mean to make people uncomfortable when I talk about cancer and death. You can't really have a good conversation when that is the topic; I mean, what do you say to that? How does one respond? I guess, what I am trying to say is that maybe I need to not say certain things out loud; maybe those kinds of things are best kept to this blog rather then in casual conversation. But, I also need to say, I've accepted that I may die. I don't expect that is going to happen and I am not depressed as I was when I first was diagnosed. But I do understand that the bottom line is this is a deadly desease and if it so chooses it will kill me no matter what I do.

Tuesday AM Update

A short update this morning...

I feel a bit more human today. The nausea has disappeared but I am still tired. My appetite is a bit more. I can really feel the neuropothy especially in my left hand and fingers. I am losing sensation on and off and it's really quite annoying.

Sunday AM update

There are several of you who receive updates from this blog in e-mail form through your AOL accounts. AOL has decided that my blog is SPAM and has blocked you from receiving these updates. Why AOL made that decision is beyond me; but right now I am powerless to do anything about it. For the meantime, please read the blog directly and send your comments to my personal e-mail address.

Having cancer really makes life simple. It is no longer a matter of IF I want to do something (go to the movies, go out to breakfast, go for a walk, etc.), it's now a matter of CAN I do something (will my body let me). For instance, I decided to get up early this morning and go out to breakfast. For any normal, non sick person, this would be a pretty automatic decision; after all the breakfast place (Denny's) is only two blocks up and four blocks over, hardly a walk that would even cause a sweat. For me, however, it's not as simple as making the decision. I have to consider if I will get sick on the way; if I will get so tired I will have to sit down and rest; or even if I get there, will I be able to eat anything. However, sometimes you have to simply put your body in motion and damn all of the possibilities. I had to get out.

I successfuly made it to Denny's, ordered breakfast, and actually managed to eat some of it. I am really amazed at just how much my appitite has changed. What I used to be able to eat comfortably I simply cannot any more. My eyes are certainly bigger then my stomach. I say I probably eat less then half of what I used to eat. This is significant. Food has played such a central role in my life. I've spent my life overweight and, recently, significantly overweight. Now, I can't taste anything; and even so I can't eat it comfortably. So the relationship between me and food has been altered radically. My brain still says, "let's eat." But my body says, "nope." I tell you, it's a trip.

So I'm home now, ready to relax and try to enjoy the rest of the day.

Saturday Night Update

I was sick again last night, but not a lot. I did manage to get out today and go over to the Beverly Center for about an hour or two. At this point I am really frustrated by my fatigue and my lack of energy. It was such a beautiful day, I wanted to stay out longer, but I couldn't.

I have a lot to say, but when it comes to writing it down and putting it into words I find it to be very difficult. I'll try to write more over the next few days.

Update Friday May 2nd

A bit better today. I was very tired and somewhat nauseated but I did manage to get out late this afternoon.

My appetite is extremely poor. I am finding that my energy directly correlates with my eating on a regular basis (surprise, huh?). When I eat, I feel better. The problem is, I sometimes can't bring myself to eat. Funny, since food has been central to my life since I can remember. Oh, the irony of all this crap.

Update: Thursday AM

I'm feeling better today. I didn't really sleep all that well, but I am feeling a bit more human.

This whole reporting of symptoms is getting pretty old. I get sick, I get better. I get sick, I get better. If it's getting old to write about it, it's probably getting old to read about it too. I wish I could give you something more exciting, such as:

A little green man appeared at the foot of my bed last night. He waved his magic wand and suddenly I had two heads. I quickly got into an argument with myself over which head would face forward and which one would face backward. We decided to compromise and face to each side, whereupon I promptly ran into the wall getting out of my bed.

Anything other then, I feel better, I feel sick...

I wish I could tell you...

I wish I could tell you my lack of posting here the last few days has been due to something positive, but, no. I have been sick almost non-stop since my last posting. The worse day (night) was Monday into Tuesday; I feel better, but that's not saying much, unfortunately. I've been getting extra hydration and anti-nausea treatments and that does help; but the fatigue is pretty hardcore.

Despite this, I still have a positive outlook and feel good in my heart and soul. This will pass eventually and I will begin to feel human once again; just in time for my next chemo treatment (sigh).

Hopefully more to follow if I am feeling up to it.

Post Chemo Update

I'm not feeling too bad. I'm not really that tired and I am not nauseous. I can't figure this thing out; I thought I would feel worse this time around based on my experience last time but I don't feel too bad right now...

Saturday Morning Update

It's going to be very warm today. It's not even 8:30 and it's probably 70 degrees outside and getting warmer. They say it should reach 90 here and over 100 in the valley. I'm preparing now for the heat later... I have my ice made and the fans going; eventually I'll get the air conditioner on and start closing the blinds to keep the sun out. I'm glad that I'm not doing chemo today; I wouldn't be able to turn the air conditioner on and I'd end up just sweating...

I am feeling good today. I ran a whole bunch of errands yesterday, one of which took me over to the DMV in Hollywood. This DMV is right around the corner from where I used to work at Comcast (now Time Warner). It was strange to be there and walk around the area I spent so much of my time in. I had some good times there, and a lot of bad times too; but I tend (as I think a lot of us do) to romanticize the past and only remember the good times.

You'll probably see another update from me later on.

Interesting Dream I Just Woke Up From

Thought I'd share with you a very interesting dream I just had:

I had some sort of meeting with Pat Summit (Tennessee Women's Basketball coach; extremely successful and very southern). I'm not sure why we were meeting, maybe I was being recruited? She walks in the room and without introducing herself (I guess I was supposed to know who she is) says in a very southern drawl, "Well, Mr. Levinson, you've been given responsibility of a very unique type of cancer, and as you know, the likelihood of survival is around 10 percent." I interrupted her and said, "Coach, hold on just one second! Now, that is no way to introduce yourself to someone." (!) Then, somehow, I was giving a speech in front of a bunch of very well dressed people. JFK and Milton Berle were in the audience(?) (!). I started talking, but instead of sounding like me, I sounded like Jack Lemmon (?). I began talking about how grateful I am, but it was all completely insincere, and it sounded even more fake since I sounded like Jack Lemmon (picture the movie Glengarry Glen Ross and you'll get the idea).

Weird, huh?

Update: Random Thoughts

A bunch of mostly non-medical random thoughts:

I have been watching a lot of playoff hockey. If you've never seen hockey in the playoffs, you owe it to yourself to check it out, if you are a sports fan. It is amazingly intense and physical, and will suck you in if you give it a chance. Added bonus: hockey in HD is amazing.

A lot of the music I have been downloading lately comes from Paris France. Apparently the dance and electronic music scene in Paris is the best in the world... I love the stuff coming out from there; it's catchy and fun. I don't understand most of the words, but when the music is that good, it doesn't matter; rhythm is universal.

Still feeling tired, but less so. I have a busy day tomorrow; I gotta go to the DMV in the morning and run some errands after.

AM Update - Thursday 4-24-2008

Feeling pretty much the same, maybe a little less tired. I seem to be less tired in the morning and then as the day goes on the fatigue hits me and I end up sleeping a lot. I am going to see the doctor today and one of the things I am going to ask him is if I can take Provigil to counteract some of the fatigue I've been experiencing. I'll let you know what he says.

Although I try to be as positive as I can be, on occasion I still get waves of regret for the things I haven't done in my life. I feel it particularly when I get fatigued and end up sleeping what I consider to be an over-amount.

Tuesday AM Update

Feeling much better this morning. I have been so tired, even six and seven days out from the chemo, and I was a bit concerned. Today, or at least right now, I am feeling much more like myself.

Today is Earth Day. Our lovely city and the Wilshire Center improvement district has decided to close Wilshire Blvd. near my house to all vehicle traffic to hold a street fair. Today, apparently, is a 'car free' day here in Los Angeles... yeah, right! By closing down Wilshire, a major, major traffic artery, all day, they are re-routing traffic through the surrounding neighborhoods - mine included. Already, at not even 7am, I can see there is significantly more traffic around my house. And it should get worse as they day goes on. I can't even imagine how frustrated drivers will be when they realize Wilshire is closed... So in order to create the illusion of a car free day, my street and neighborhood will have to absorb a lot of Wilshire Blvd.'s traffic; we will get more cars, more polution, both air and noise, and angry drivers. This, my friends, is a load of crapacola : ) I wish someone had thought this through better; at least do it on a weekend!

Monday AM Update

First I'd like to thank Frannie for the water : ) You don't even know me, and already you're giving me gifts? I'm not worthy. Thank you : )

I had a pretty good weekend, although I was really tired. I got to see my father, my sister, and her fiance on Saturday, and Sunday, I got to see Mom, Dad, my brother and his fiance. I'm very lucky to have incredible family. This thing has changed us, has made us closer and appreciate each other more then ever. In that, it is a blessing.