I've always loved these guys...

...even before I saw this.

Thanks Peat!

(And yes, the final quote does remind me of something).

Still holding

I spoke with Dr. B today after he presented to the Tumor Board, and as before there isn't much clarity as to what the "white spot" might be. He still thinks it's likely nothing, and even the head of the radiology lab joked that he shouldn't even be allowed to present this tiny spot to the board. But they did all agree that it should be monitored.

An aggressive approach would be to have an MRI in a week or two. To me that seems less useful, since if it's still there and the same, we don't learn anything. Two weeks is not a lot of time to grow. For me, the approach that makes the most sense is to wait a month and then get another MRI. At that point, any changes will become more clear and we'll know what it is and what to do about it. And a month isn't long enough for a tumor to take over my life. Speaking of which, I've got one more month to enjoy. So I'm off!

am·big·u·ous /amˈbigyo͞oəs/ - Adjective

1. (of language) Open to more than one interpretation; having a double meaning.

2. Unclear or inexact because a choice between alternatives has not been made.
3. My latest MRI

Odds are it's nothing, right? Just a little white spot in an area near the blood vessels. Likely it's just damaged "pipes" leaking the contrast agent. And maybe it wasn't in the previous MRIs because the last three have each been on completely different equipment. Yeah, maybe it was already there and just didn't show up on those other MRIs. Of course, it does look like it could be a growing tumor also....

And that's the conundrum. What to do about white spots that appear in MRIs?
I could try for surgery, but what if it's nothing?
I could try for Avastin, to make it disappear, but then how will I know what it was?
I could try to get a biopsy, but what if they don't pull out the right stuff?
Or I could wait, and watch....

Stay tuned.

Which came first?

No, not the chicken or the eggs.
Check this out! And let the debate begin.... ;-)

A happy anniversary indeed

The "official" two year anniversary of the diagnosis was last night. Though Tuesday felt a little more like the anniversary, since it all went down on the Tuesday after the July 4th weekend. Either way, two years is two years. I've already beaten the stats. Year three, here I come.

"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.