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.)


  1. Wow - what an epic. Thank you so much for sharing, and I'll continue to keep you in my thoughts.

  2. Glad you're home. It was really helpful to compare to Emily's experience and that makes sense.

  3. Eric -

    What a great post! I really appreciate you explaining your perspective on your physical status & "recovery" that makes a lot of sense & helps me understand where you are at.

    And yes also fascinating the "no-sleep" brain surgery. Yes, let's go for "no more opportunities" to experience new surgical techniques please :-)

    And finally. Wow. Good thing he got as much of that stuff out as he could. So yes, more chemo - but I'm glad you're moving forward!