"Looking good Billy Ray!"

"Feeling good Louis!"

That's about how it is for me right now. In the back of my mind, I understand that this might not last. Statistically it can't last. But statistics are boring, and right now I'm not being forced to take any chemo. In essence I have returned to a physically "normal" life, a life chopped into 6 week segments. And I was just given another reprieve at my MRI today.

I understand people's expectation for cancer to cause physical mutation. Before my "survivorship" began, I generally expected the same. That said, sometimes brain cancer makes for a strange bedfellow - predictively deadly yet often presently invisible. So yes, for now I'm looking good, feeling good, and for the most part, living good.

A must see movie!

It's about a young person with cancer. For those who are curious about what it's been like, let's go see it!

Thanks Liz Army!

Six weeks at a time

I finally got a chance to chat with Dr. B at UCSF after he looked at the MRIs and reports from Cedars-Sinai. It might have been one of the quickest conversations I've ever had with a doc! Basically he said it looked pretty good, though he did mention the same small bright areas that Dr. Rudnick described as well. He then said that I can basically stick with the plan laid out by Cedars-Sinai. Which means...six weeks of freedom! After that, I'll head in for my next MRI, hopeful that I'll get another stellar report which will buy me another round.

The reality of our world....

Today I got news about a couple of people from the brain tumor world. One of them was diagnosed about 6 years ago and was the first person who gave me advice when I was initially diagnosed. He had a recurrence in August. He then entered another trial which led to some surgical complications. From that point on it was a downward spiral that eventually took his life this past weekend.

The other is a friend who had her recurrence diagnosed around the same time as mine. The first clinical trial she was in didn't succeed and she was forced to find another trial and enter repeat surgery only a few months later. She was following in my footsteps in the Cedars-Sinai vaccine trial. This week, on her trip to LA to start the trial, she found out that her tumor had already grown back so fast that she can no longer enter the trial and needs to find a different approach to attack it.

I'm not entirely sure why I'm bringing this up now, besides the obvious fact that I really feel for Jim's friends and family and for Jackie herself and her friends and family. But part of me also sees this as another signal that optimism is important, but so is reality.

Phew!

It's been about 4 months since my recurrence was diagnosed. It's been about 3 months since it was removed and I began the new clinical trial. It's been about a month since I was motivated to post anything. And it's been about 7 hours since I got the first trial results.

To quote the Cedars-Sinai oncologist, "It think it looks really good" and "You've got the best possible case scenario." Yay!

So what are the next steps? Well, first off I'm going to try to chat with the UCSF docs to see if they can (or even want to) convince me that starting some kind of chemo would be very important. Assuming they can't (or won't), then I'll be checking in again at 6 week intervals during the "crucial time" to see if things are being held at bay.

Phew.

Why I haven't been updating

"Your pain is the breaking of the shell that encloses your understanding" - Latest fortune cookie

"Sometimes, life sucks" - Anonymous

This has been a particularly challenging year so far. Many of you know the story, but it might be new to others. Right around the day my recurrence was diagnosed, my dad was also diagnosed for adenocarcinoma. We began to battle our cancers in our own ways, though there was some overlap in the treatments. My amazing family switched into high gear, with my two sisters heading out west to take care of me while my brother remained in Michigan to watch over my mom and dad.

Since then our paths were very different. My dad's health generally declined until he just didn't feel like fighting any more. He passed away a week ago Sunday.

My dad was amazing. We all loved him so much, and while nobody lives forever, it still sucks to lose someone so wonderful. And that's why I haven't been updating the blog.

Let the countdown begin!

Today I received the first vaccine shot made from my own home-grown tumor. I have to say, there isn't much excitement to report. In fact, the scariest part was when the flight to LA was showing an hour delay, so I had to wrestle with United to get onto an earlier flight. And the most exciting part was when I finished up at 4:30, and the taxi managed to get me to LAX in under 30 minutes, in spite of commuter traffic!

Beyond that, the event was as follows:
1) Go to lunch at Jerry's Deli and be disappointed that, again, no stars are visiting me
2) Head to the appointment and take Benadryl and Tylenol 30 minutes before taking the vaccine
3) Get the vaccine shot and hold your arm up for 15 minutes
4) Try to sleep in an awkward chair until they wake you up to measure blood pressure and temperature
5) Go home

Of course, as we all know, sometimes no news is good news.

Interesting Phase 3 Clinical Trial

Here's a video of an interesting treatment explained pretty well. Not for me right now, but maybe down the line....

2nd verse, same as the first

Last year, on March 6th, I had one of my best days EVER! Well here we are, around the same time, one year later. And I now have evidence to back up the fact that the Huck Cancer tournament is amazing. This year my "bro" headed out from Michigan to join in the fun. Since we each raised over $1,000, and we were on the same team, well...let's just say our taking the championship looked suspiciously like someone fixed the system. In fact, all of the games were pretty close, and he and I were so physically spent by the end, we pretty much hobbled to the party that night and all of the next day (and we'll see about tomorrow too).

Regardless, win or lose, this tournament was incredibly wonderful for me. Once again we had a huge group of amazing volunteers pulling it all together, run primarily by Renata and Coleo, but also with most of the same amazing people as last year. In addition, a lot of my coworkers joined in the fun and helped out tremendously. We also raised over $40,000 for the Livestrong Foundation again. So for all those people who did so much to make this tournament happen (and honestly, I was not a big part of it myself), you deserve tremendous praise and thanks. Therefore, as a representative of the "Cancer Party", I present to you the official statement as follows: Thank you thank you thank you thank you thank you!

Now...time for me to go to bed so my muscles can practice loosening up before I have to walk again.

Ooops

Sorry. I kinda left people hangin'. So here's a quick summary of answers to questions you probably all have, but thankfully my dear friend Poopapuparama voiced:

1) How many treatments so far?
None. I don't start the actual vaccines until March 14th. They will be day trips to LA taking about 3 hours. I start with some Benadryl and Tylenol, and then I get "the shot". Then they watch my reaction for the rest of the time. I get 3 vaccines total, every other Monday, starting the 14th. Along with the vaccines I need to apply Imiquimod to my (soon to be shaven) armpit for 5 days surrounding the vaccine. This is meant to aggravate my immune system to enhance the vaccines.

2) How do you feel from them?
We'll see....

3) Is sis still there?
Nope. Big sis left soon after we got back from LA, and "W" left that Saturday. Last week I spent time recuperating, but this week I'm actually back at work! It's going pretty well, though I haven't yet managed to get Jimmy to sing me that song he wrote....

4) How long do the treatments last each time and for how long will you be doing them?
See #1. But there are only 3 treatments, and then after the treatments I have another post-treatment appointment down in LA to see how they might be working and also to discuss the possibility of starting another chemo. Yeah, sure, I'm looking forward to that....

Other than that I'm doing relatively well. A little better every day, but knocking on wood a lot....