Sunday 8:40 pm

I feel hopeful. It's a strange feeling to have, because I haven't felt hopeful very much lately. I haven't allowed myself to think about the future, to dream about any possibilities, because I had no idea what the future would bring. I could only focus on what I had to do next, which usually involved some sort of test or a doctor's visit. Thinking about what my life could become was a luxury I couldn't afford, because I didn't know if I was going to have one.

Maybe I haven't been explicit in saying this, but I was scared shitless I was going to die. I knew intellectually all the doctors told me it was a slow growing tumor, but that doesn't matter. I thought my life was over, that I had reached the pinnacle of my growth as a person, and that I was going to die. I had a lot of regrets over things I wanted to do, but didn't. Most of them centered around my lack of social connection, which, until recently, had not been much of a priority in my life. In fact, as I look back, I believe I purposely cut myself off from a lot of social connections because of my fear of doing the wrong thing and being embarrassed. I know that the fact I am extremely overweight cut me off socially from a lot of things, and I believe that on some level my compulsion to overeat and not to address the issue was a conscious decision on my part to distance myself from having to be social.

I have changed as a person. I had been changing a lot before this thing came down, but I have changed even more as a result of this experience. As I have said to my family and friends, regret is the killer. I want to live my life with as little regret as possible. And part of living without regret for me is to go out, be social, and get a girlfriend. I really want one. Sounds stupid saying it, like I am some junior high schooler wishing for someone to go steady with. In a way, on some levels I am still in junior high school, even though I am 39 years old. I have almost no experience with women. I have to accept that.

IMPORTANT MAJOR UPDATE!!

I just got off the phone with the oncologist...

The brain and PET scans came back clean, no cancer there. No cancer in the lungs. What this means is that the cancer is only where they expected it to be: the presacral mass tumor, the liver, and the bone.

The oncologist said to me, "You aren't going to die from this. You're going to be around for a long time." I will start chemo Tuesday as we discussed and also be treated for the bone loss by an infusion of calcium. At some point, I will also begin to take testasterone to boost my level up (due to being on steriods for such a long time, I have osteoporosis as well as low levels of testasterone).

I am so happy, I am floating on air right now. You wanna hear how things can change your life perspective? Now I only have to deal with chronic crohn's, asthma, diabetes, and asberger's syndrome, and I couldn't be happier!!

I thank you all for your love and your support. More to follow as I get it.

Brain MRI completed

I did the brain MRI today. I had a lot of fear going in, as I am claustrophobic and have had problems with completing MRI's without being sedated. Fortunately, I took some proactive steps to deal with this, so it turned out ok in the end. The next thing on the agenda is getting the port put in Monday, the meeting with the doctor after that, and then my first chemo on Tuesday.

Here is the playlist I put on a CD to get me through the MRI:

Sam & Dave, "You Don't Know Like I Know", The Complete Stax / Volt Singles
The Band, "Lookout Cleveland", The Band
The Bar-Kays, "Soul Finger", The Complete Stax / Volt Singles
The Beach Boys, "The Little Girl I Once Knew" (45 version), Good Vibrations
The Beatles, "Hey Jude", Past Masters Vol. 1
Abite, "Je Suis Fache (I Am Angry)" The Best of World Music
Al Green, "Let's Stay Toegether," Pulp Fiction Original Soundtrack
Average White Band, "Pick Up The Pieces", Best Of
Mo Horizons, "Prince Charles' Latest Affair", Virtual Brazilia
David Bowie, "Queen Bitch", Hunky Dory
The Beatles, "Let It Be", Let It Be Original Soundtrack
Bob Marley, "Git Up Stand Up", Legend
Everclear, "Santa Monica", The Best of Everclear
U2, "Bad (Live)", Wide Awake In America
Steely Dan, "Pretzel Logic" Pretzel Logic
Steve Miller Band, "Take The Money & Run", Smokin Aces Original Soundtrack
Stevie Wonder, "Superstition" Stevie Wonder's Original Musicuarium Vol. 1

Something I want to share with you

As I believe I have mentioned, I will be getting a chemotherapy port put in Monday in order to start chemo on Tuesday. I wasn't sure what a port was, and I had heard different things about it, so I looked it up on Wikipedia. Along with the information was a external link to someones cancer blog who had a photo essay on what a port is, how it works, and what it looks like. He was very enthusiastic about getting a port and his only regret was not getting one sooner. This made me less anxious. I wanted to read more about his experience, so I went to his cancer blog. There was some great information, most of which I didn't know and wanted answers to, so I was happy I found this resource. As I came to the bottom of the page, I saw this entry:

"(X) died very quickly on (X date) with his wife by his side. He was in no pain." Below that were details of his funeral arrangements.

I have to tell you, this put a chill in my bones. First, it really made me feel strange that the blog I was reading was from a dead person. Second, it makes the reality of what could happen to me hit me right in the face.

I do not want to have an entry in this blog like the one above. I want to have an entry which reads, "So, I am in remission, I feel good, I've been working for a while, and my doctor visits are back to a normal once a month visit. This blog has served its purpose; here endeth the lesson." I hope and pray that you will see that entry on this blog sooner rather then later.

Colonoscopy Update

Had the colonoscopy today. Per the doctor, no cancer either in the upper or lower GI. Hopefully we can rule colon cancer out. I have an MRI of my brain (what brain? some of you may ask) tomorrow.

Can't Sleep, So...

I can't sleep. So, for your reading and listening pleasure, here is What I am Listening To, Version 3.0:

Justice, "D.A.N.C.E."
I actually saw the video of this song on one of the HD music channels as I was channel surfing one night. The video is AMAZING. Go check the video out on YouTube and you'll see what I mean. The song supposedly is a tribute to Michael Jackson, with a lot of MJ song references embedded. This is a DJ group from France and they make amazing music. Their new album, "Cross," is something I downloaded recently and I really like. It sounds very "Thriller" like, but also very electronic. One of their songs, "Genesis," is featured in a Cadilac commercial, so you may have heard them before, just not known it.

Just for the record, if you watch the video, there is a T-shirt one of the guys wears that has a black triangle with an eye in the center of it and the words "She's Close..." I WANT THAT T-SHIRT!!!

Moby, "Next is the E"
One of the classic rave techno tunes of all time. We used to play this all the time when I used to work at MARS FM back in the early 90's. I'd forgotten how good the song was. Moby throws out all the stops and basically created the formula for 90's techno. You can't beat the Silvester samples : )

KLF, "3am (Eternal)"
Yet another classic from MARS-FM. "The White Room", the album this song is taken from, was one of the first albums I ever heard created by DJ's, for the DJ rave culture. It still satisfies me 15 years later.

OK, I am kinda tired now. Gonna try to sleep.

This is it...

Today, I had a number of tests done, including a PET scan. Tomorrow, I will have a second colonscopy. Saturday, I will have a brain MRI. And beginning next week, I will start chemotherapy. Yes, dear readers, after exactly two months of bullshit, the treatment is finally going to begin.

I have a oncologist who, after one office visit and three days, managed to make more progress in getting my treatment started then any other doctor did in two months. In his words, we are going to war. I like this guy a lot.

So, one chapter ends, and another begins. I don't know what chemo will bring; I know it will not be pleasant. Whatever happens, you will hear about it here.

Medical Test Update

I have the testing schedule:

Tomorrow, I'll be going to get five imaging tests done over at Cedars, including a PET scan and a chest CT scan. Saturday, I will be getting a brain MRI. April 9th is the scheduled date for the colonoscopy.

More to follow.

Latest Medical News Update

I spent pretty much all day at two different Doctor's offices with my Mom and Dad (my biological father, not John). Here is what we know:

As I mentioned before, this is not a chordoma. It is, unfortunately, a fairly rare cancer presentation. They are not entirely sure what it is, or where it originates from; and this presents a problem because, if they don't know where it originates from, they can't treat it properly. So, for example, if this originated from the colon, the chemo treatment would be one thing; if it came from the lungs, it would be treated another way. It apparently is very rare to have this type of tumor in this particular location; they think it may have started from somewhere else in the body and traveled there. So, they have to find the original source.

In order to do that, more tests are in order, among them a PET scan, a second colonoscopy, a brain MRI, and a chest CT scan. So, I'll be involved in those for a while. There is no surgery date in the forseable future, if there is to be one at all. Most likely this will be a chemo based treatment, with surgery to come later if at all. I like the oncologist very much and we are on the same page as far as treatment goes, so I have confidence in him and his approach. I do plan to get a second opinion from a different oncologist as well.

Emotionally, I am drained. I am really pissed off at God for making me go through this and interupting the plans I had for my life. I am extremely grateful for my wonderful family, without whom I would not be able to survive this. And, I will survive. Let there be no doubt about that.

I've decided to do a reverse "act as if". I have been putting off a lot of things until the treatment is clarified and completed, such as trying to meet women and doing some things career wise. Since it's pretty clear the treatment will not be clarified nor completed any time soon, I am not going to wait around any longer. I've decided to put my profile up on some of the dating sites and see what happens. I've decided not to wait any longer and try to do some continuing education online pertaining to my career. I'm not going to wait. I am going to live my life as much as possible, and move forward with my plans and schemes as much as possible, taking into account what I am dealing with. I have nothing to lose. And I feel really shitty waiting around for the shoe to drop, which is clear aint gonna happen any time soon.

Boring Update

I am BORED!!! I am freaking ass tired of feeling in pain and not having my body behave in a predictable way. I have to do something other then sit on my big freaking ass all day long, but every time I go out, I freaking pay for it in pain later... I want this to be OVER!! I want to go back to work, I want this freaking pain to END already... By the way, if any of you know a nice, mid twenties to early thirties, single, fairly good looking, smart woman who is tolerant of idiosyncratic behavior, PLEASE PLEASE PLEASE give her my damn phone number, e-mail address, etc. I gotta be honest here. I am tired of being single. I can't go out and meet anyone. Going to a bar is pretty much out of the question. So, to my dear readers: HOOK A BROTHER UP!!! Thank you and please return your chairs and tray tables to their upright and locked position.

BIG NEWS!!!

OK, I got the biopsy results back...

Per Dr. Dean Chau, it is NOT chordoma. It appears to be a neuroendocrine tumor, related to my crohn's disease. This is very positive news. It means that they know what it is, and it means that we now can move forward with an established plan for treatment. I will still have to have surgery, radiation, and probably chemotherapy; and it could still be malignant. However, overall it is good news for me and I am grateful it is what it is : )

More to follow.

By the way, I know that you can look up this tumor online. I already did that so I know what I'm dealing with. I am not getting Pollyana about the outcome, but having something that is dealt with regularly is much better then dealing with something that less then 3,000 people in the whole country have. Please, restrain yourselves from sending me or my family articles about this tumor, treatments, doctors, etc. I find that much of what is found online is the worst case senario and often tends to describe treatment and recovery in harsh terms. And, quite frankly, I don't want to know. I want to be told directly by my doctor the prognosis and recovery plan, and base my expectations on that.

Long Time No Update

Yes, I know it's been quite a while. I haven't felt much like writing. I've been dealing with asthma, including a trip to the ER Sunday night / Monday morning, so I have felt pretty shitty in general. I don't feel very enthusiastic right now about anything. I'm still waiting to hear about the biopsy. Uggh...

Maybe I'll be more inspired later.

Update - Thursday 3-13

Woke up in a bit more pain then I have been in recently. Still not enough to really be a bother, but noticable. I've been doing a lot more stuff recently, so maybe I need to take it easy for a while.

More to follow.

Are you having trouble posting to this blog?

I keep getting e-mails from my Mom saying people are having trouble posting to the blog. If you are having trouble posting, please e-mail me directly. (I don't want to put my e-mail address here because I will get spam. Ask my Mom for it if you don't have it already.)

All comments that are posted are moderated; that is, they have to be approved by me before they get posted. The way that works is I get an e-mail indicating someone has posted something. Normally, I approve it and it goes up that second. Sometimes, I don't approve it, such as comments that are directly personal to me and not related to the blog, or out and out spam. I check my e-mail several times daily so if you post something, you will see it posted quickly. If, for any reason, I decide not to approve a post, I always send an e-mail to that person explaining why, unless it's spam, in which case it's ignored. I hope that this makes sense to people.

Also, if anyone out there can take some time and explain how technology works to my Mom, I would appreciate it. I do not have the patience nor the desire to be a tutor to her; however I end up having to hold her hand constantly when it comes to her not understanding how to do certain things. My Mom is a very smart woman; she has a Masters degree. For the life of me, I can't understand why she can't figure very basic things out. She says she has a learning disability, which I agree with. But personally, I think she is so used to me and everyone else rescuing her from technology that she won't take the initative to even begin to figure out how things work. When I get upset, she tells me that it took me a long time to figure out how to be social and that she had to hold my hand then, and why can't I do the same thing for her? There are several differences. One, I am the son, and she is the mother. She's supposed to teach me things, not the other way around. Second, I really wanted to learn how to be social and I NEVER gave up trying. I made a lot of mistakes, a lot of embarassing mistakes, but through them I learned how to relate and now I am fairly comfortable with people. When it comes to technology, my Mom tries, fails, and then gives up, and I end up having to rescue her. Can you tell I really resent it?

The biopsy is complete!

I got the biopsy done today. It's a major step on the road to whatever the final treatment is going to be. Now we wait to see what the pathology results are. It is possible I could have surgery the first week of April, which means if all goes well I could be back at work by July...

Aside from the pain of the biopsy itself (which feels like someone took a nice sized bite out of my ass), I am not in pain from the tumor. My decks are clear now while we wait for the results. I am going to try and enjoy this time, get out, see some friends, try to just relax. Hopefully I will stay pain free.

Non Medical: Who's Your City?

I wanted to share this website with you - it lets you figure out what city you should move to based on your personality! I love this kind of stuff : )

http://creativeclass.com/whos_your_city/

Update - March 9th

I have been pretty much pain free for the past few days, which is an amazing blessing. With all that has gone on recently, to have my body behave somewhat normally and predictably is really a relief.

I have really needed to take a break from focusing on my condition. I haven't really wanted to talk to anyone lately. I've been talking to my parents multiple times during the day and it gets to be a little much. So, I have been turning my phone off and if I do answer it, asking people if I can call them later. You can call this isolation if you want to. All of this interaction and focus on my illness is overwhelming, and I need to be by myself for a little while. This week I will be dealing with the biopsy and getting the surgery scheduled, so for this weekend I am taking time out.

The closer it gets, the more scared I am

I am scared. I think about getting the biopsy and then having surgery and all of the various permutations of what could happen, and I get scared. I hate the idea of going under anesthesia and not being in control. The possibility of being in real pain afterwards scares me. And who knows what they are going to have to do to remove this thing? If they have to remove nerves, what will that affect? The closer I get, the more frightened I get.

Biopsy Update

The CT guided biopsy is now scheduled for March 11th (a week from today) at 6:30 am, at Cedars Sinai.

More to follow.

An Update We've been Waiting For

After speaking with Dr. Dean Chao, who is the chordoma specialist at UCSF, here is the very latest:

Dr. Chao believes this is in fact a chordoma, but does not present itself in the classic form (ie, no lesions). He has given us the OK to proceed with the biopsy, with the strong proviso the area of skin they enter has to be marked, either by a stich or a tattoo, so it can be easily referenced during surgery and removed. We are going to schedule the biopsy for this week.

After the biopsy results come back, I will go up to San Francisco and have surgery. After surgery I will have very specific radiation treatments (CYBER-KNIFE) spread out over a ten day to two week period.

I'll know more about the specific timeline later today.

All Along The Watchtower

The lyrics of this song really say what I've been feeling:

"There must be some way out of here," said the joker to the thief,
"There's too much confusion, I can't get no relief.
Businessmen, they drink my wine, plowmen dig my earth,
None of them along the line know what any of it is worth."

"No reason to get excited," the thief, he kindly spoke,
"There are many here among us who feel that life is but a joke.
But you and I, we've been through that, and this is not our fate,
So let us not talk falsely now, the hour is getting late."