Wednesday, September 28, 2011

50/50 is opening soon!

Here's the link to an interview with Will Reiser on Fresh Air:

Check it out, and let's go!

Sunday, September 25, 2011

And the winner is...

...T-Bone-Money with her guess of 40 staples! Congratulations! And sorry, there is no prize allowing you to pull them all out of my head. Though it you want to borrow them to torture the Torg, let's talk.

Friday, September 23, 2011

May the words of my mouth and the meditation of my heart...

...not offend too many people. Yes, I've (partially) rejoined the webbed world. Thanks to my mom and sister for filling in and updating (and hopefully still volunteering to step up for reporting when needed?) and my other sister and brother for being there for me from afar. And thanks to my freighbors and friends for all the sweet comments, visits, and contacts during the recovery. It is very much appreciated.

This whole recurrence has definitely reminded me of how awkward it can be to have a brain tumor, at least of the variety that I and some of my fellow "survivors" have. Understandably, many people are surprised by the physical and even mental recovery from a surgery involving what we all think of as the most crucial organ in our bodies. That said, and as much as I love receiving motivating compliments, I guess I don't think that my surgical recovery is that "impressive". Don't take it the wrong way. I'm thrilled at the rate of my recovery, but not completely surprised. In general, the areas of my "brain" being removed are specifically areas no longer in control of my sensory or physical functions. The brain itself isn't a physically sensitive organ, though it can effect sensitivity and physical functioning when damaged in areas controlling other organs or features. Where my personal tumors are hanging out are areas that are fairly non-functional. Well...except when I use them to make excuses....

But to put it simply, I've compared it to a recent procedure my friend "Savory-Em" went through last summer with broken ribs and a punctured lung. If she had been released from the hospital as quickly as I was, and if she were able to perform within days at a similar physical activity level, people should have been shocked. Long-term, however, she should experience close to complete recovery with little to no detriment from the original injury. My experience is the exact opposite in many ways, in that the short term effect of this particular type of cancer, even with surgery, is relatively benign compared to so many other medical issues, whereas the statistical long-term effect is what gives me the greatest concern. Hence the awkwardness of having a brain tumor. It seems like most people's standard expectations don't really match my personal expectations or experience. I should however mention (once again) that I do appreciate all of the wonderful compliments and positive comments I get! This is definitely not a criticism, but more of an explanation of my own perspective.

Many people have been curious about the surgery itself, and since I was actually awake throughout the entire procedure, I figure I should write down my experience now before I forget! The previous surgery at Cedars-Sinai was also an "awake" surgery, but their procedure was very different than this one. Down there I was first put asleep, then awakened for a quick brain mapping, and then put back to sleep for the surgery itself. After the surgery I could not remember anything. Here I was only put to sleep at the very beginning before they began the mapping, and so I basically can remember the rest of the entire process, all the way to the end.

The day before surgery I took a "test" naming simple objects shown to me on a computer screen. The test was essentially meant to determine which images I could very simply name so they could identify which parts of my stimulated cortex were affecting that process. Any image where there was some delay or doubt was removed from the list. I also read through a list of words to test another part of my verbal control.

During the surgery, I was shown these images again and told to name them as quickly as possible, as they were simultaneously stimulating my brain cortex. They also asked me to tell them if I noticed a flash of light towards the edge of my field of view. This did happened a few times and was actually externally stimulated by them in my brain. I never actually felt anything related to the stimulation process itself. The most difficult part of being awake was my general physical condition. Prior to the brain mapping I was under slightly higher sedation. I was still aware of what was happening and could hear conversations and see what was going on, but was free from pain and misery. During the mapping, things got very difficult. I was essentially brought to complete consciousness. My physical position was very uncomfortable, and my throat was very dry making it difficult to speak and breath. The worst was when they noticed that I was "snoring" while breathing. They introduced a pair of tubes into my nostrils to clear my sinuses, and the injection of some nasty fluid led to such an intense shock of pain that I almost jumped off the surgery table (if I hadn't been essentially locked down).

During the mapping process, Dr. Berger tried to comfort me by keeping me up to date on the progress and how close we were to being done. Once the mapping was complete, they were able to sedate me enough to remove the pain and discomfort, though I could still hear everything that was happening. I felt the stitches going in and heard them talking about the process. And then I heard the staples going in, which was unexpected after the stitches! Right up until the end I remained awake, if not alert. I was even awake as they transferred me to the ICU. Though I'm pretty sure soon after that I fell asleep....

So would I do the "awake surgery" again? Difficult question. If I were once again given Dr. Berger's opinion on the effectiveness of this approach for my specific case, no, I would not do it again. It probably did not offer any advantage (as confirmed in his very kind answers to my post-surgery questions), and while it was interesting from a scientific perspective, it was a miserable process to go through. That said, if another "opportunity" presents itself, I will make the decision based on the details of the situation. Or I'll go back to Cedars-Sinai where I couldn't remember a damned thing. Of course, let's hope there aren't any more opportunities showing their ugly faces!

As for the latest update, I had a brief conversation with Dr. B who did confirm that the tumor was real and aggressive, and the extra tumor that Dr. Berger removed was also likely a GBM tumor, sitting there twiddling its thumbs waiting for a chance to spread. Of course they couldn't remove it all, but a lot more is gone now than before! More information to come after an appointment with Dr. B in a week or so and possibly a discussion with Dr. Rudnick down at Cedars-Sinai.

In the meantime, I'll continue to push my recovery back to "normalcy" over the next few weeks. The staples (how many? vote now!) will be removed in about a week. The steroid dosage is already starting to taper and should last another week or so. At some point I will likely be starting the chemo again, with the hope that it does its job with little to no side effects.

Thanks again to everyone who has been there for me live or simply in their thoughts. It's definitely kept me motivated to push forward. My wonderful sister can be relieved of contact now as I do have access to my phone, though if you can't reach me I think she's still ok getting harassed until she heads back to Jersey (I do have AT&T after all, so reaching me was a challenge even before cancer).

Love you all!

"Wolverine" (Hmmm...does that explain the rapid recovery? Stay tuned.)

Thursday, September 22, 2011

Eric is home!

Yes he got his walking papers today and is back at the manse. He welcomes visitors but please call first as he is also napping a fair amount. And now the moment you have been waiting for--we are opening up the "guess the number of staples" contest again. Enter early and often. But beware--Lil mom keeps trying to cheat and count the staples, so Eric has resorted to wearing a beautiful hat, lovingly knitted for him by his niece....

Wednesday, September 21, 2011

Very latest update

Eric has just been moved from the ICU to his own private room - L 873. He is scheduled for an MRI later today, but right now we don't know what time. Otherwise he's available for visitors. TMI alert: this was his goal for the day.

Tuesday, September 20, 2011

Surgery update

Just a quick update to let you know that everything went well and Eric is already on the mend. He IS sleeping a lot--the combination of getting up at 4 in the morning and 5 hours of brain surgery seems to have depleted his strength a little. He is also still in the ICU but expects to get a regular room tomorrow. And he was happy to hear that Dr. Berger insists that his patients get private rooms! He should be ready to receive visitors tomorrow.

What Eric forgot to tell you.

So the MRI technician wondered if there was anything Eric forgot to tell him that might explain his unusual reactions to the MRI. That's when we remembered the adamantium that permeates his system. Makes sense, right? Right now he's still in surgery. We will update.
Big sis and Lil mom.

Monday, September 19, 2011

It's time

First off, I want to thank everybody who has sent me their best wishes through e-mail, phone messages, or even just thoughts. It really means a lot to me.

Today I went through an MRI, an MS, and an MSI. The MRI once again provided stimulation of my "bird wings". A lot of time was actually spent adjusting the system to reduce the peripheral nerve stimulation, but apparently I'm "unique". I am the only person to date who had the experience I had all the way through the imaging. The conclusion? That system has twice the magnetic power of the other systems I've used (3 Tesla vs. 1.5 Tesla) and apparently I'm quite sensitive....

This was my first exposure to MSI, and it was very interesting. MSI stands for Magnetic Source Imaging, and the idea is simple. You go through a series of sensory and mechanical "test cases" while they monitor the magnetic signals produced by your brain. I was given visual, auditory, and sensory inputs and also had to produce similar outputs. Dr. Berger runs these tests on all of his patients to provide additional mapping to the MRI. It's apparently similar to fMRI (KP - care to comment?) but easier to measure. The room itself looked like a research lab, but the procedure was pretty interesting to me (maybe because it was a research lab?) I'm still hoping to see the match-up between the MRI and the MSI at some point. So someone should remind me, as I have a tendency to forget due to my...never mind.

Of course, I should've remembered what happened down at Cedars-Sinai the day prior to surgery. Yep, once again it was "feduciary day".
Now I've gotta make sure I don't accidentally scratch any of them off tonight.

In other news, I finally met with Dr. Berger and it was really great to talk to him. We are now going to proceed with the "awake surgery". Even though he doesn't seem to think it's necessary, he did say that if I felt more comfortable with that approach, we should go with it. He also mentioned that he was going to take a biopsy of the area where my previous tumor was located, and if he finds something there he will remove it as well. That definitely made us all happy we chose him!

My mom and sister have been watching after me, and will continue to do so over the next several days. I love my family! And I love my friends too! Thanks again for all your support, and I'll catch you on the other side.

Saturday, September 17, 2011

"Prediction is difficult, especially about the future." - Yogi Berra

For those curious, the final plan has been laid out in stone. My "Lil Mom" and "Big Sis" arrive tomorrow morning. Monday I go through the pre-surgery MRI and finally get to meet with Dr. Berger. As many of you know, the two main motivators for battling to get Dr. Berger were his clinical trial and his "awake surgery" technique. I learned yesterday that neither of those will apply to me. The explanations I've heard so far make some sense, but I want to hear it from the surgeons mouth. Until then, I need to shake my disappointment. I've also had many people (rightfully) wonder if I'm getting nervous about the upcoming surgery. I need to report to the hospital by 5 am. Up until now, I never even knew that 5 am existed. So am I nervous? Yes! Mostly about having to get up well before 5 am! In fact, for the surgery itself I'm not sure if I'll even need to be anesthetized....

Beyond that, little is known for sure. I don't know what room I'll be in and I don't know how many days I'll be in the hospital. If I'm lucky and it's anything like the last surgery, I'll be released after only a couple of days. Once things settle in, I'll try to get more specific information up to help promote visitation!

Thursday, September 15, 2011

Me? Planning ahead?

Just bought one of these TRX Suspension Training systems! Yeah, yeah, I know. But I was thinking that after surgery I'll be stuck at home wondering how to keep up my energy. Now I can turn to the Ultimate in Bodyweight Training! At least I've got something to dream about in my post-surgical naps.

Tuesday, September 13, 2011

One week from today... surgery #3 day. Yes, it's finally been confirmed.

Friday, September 9, 2011

Elvis has left the building

Headed out of the hospital about an hour ago, feeling relatively fine. Haven't noticed any immediate side-effects. I suspect things will accumulate with time, but I'll take it!


Just took my first chemo pills. How's that for real-time blogging! Though I suppose I should be tweeting this stuff instead.

I can sense the tumor getting attacked as I type....

Thursday, September 8, 2011

T-minus 17 hours and counting

Tomorrow morning I start the chemo treatment. Unfortunately it sounds like I'll be sitting in the hospital for about 5 hours. Luckily they have wi-fi.

Saturday, September 3, 2011

And the answer is....

From NS: "The B field was high enough to awaken long dormant cells in your head that used to follow earth's magnetic field. The chirp frequency from the MRI was near the right frequency of the chirp from the bird you evolved from so your lats involuntarily flex to flap what used to be your wings."

And my co-worker "Skippy" sent me this. Yes, I'm actually giving "Skippy" credit for something. That *clearly* shows I have a brain tumor....

Now, if I could only fly!

Friday, September 2, 2011

Scientists (and science lovers), listen up!

I just had the craziest MRI I've ever had. And I've had a lot of MRIs. Listen to this, and let's figure out what happened!

This MRI was the first one I've had in the main UCSF hospital on the 3rd floor. It was a GE system, which I've been on before. This time, on the second sequence which lasted 7 minutes, I started getting crazy and rapid muscle spasms in my lats! It alternated between the right and left side, and it was happening directly in correlation with the loud chirping noise. Only it stopped in between the high chirps, and it faded away little by little as my position was shifted.

Then, as we got closer to the end of that sequence, it started up again! Slowly increasing until it ended up right where it started. Which made me think that there was some kind of cycling of the position of the brain or the field.

After that, I went through several normal cycles until they started the contrast agent. And with that particular cycle it happened again, only way stronger than the first time! This one actually scared me a little bit. The muscles were rapidly pulsating.

I mentioned it to the tech, and he looked at me like I was crazy. I could only imagine that in this particular MRI there was some (undesirable) electric field in addition to the "normal" magnetic field triggering a particular part of my brain that happens to control the lats. But I'm open to any other theories!

Bring it on....