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:

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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.