The Liz Army-squared: Me with Liz Z. in Berkeley
For all of you who worried about me you can now breathe a big sigh of relief–I was able to reassemble the 3D brain puzzle three times during my visit to Kaiser neuro-oncology this past Wednesday. I might not be the fastest assembler but surely I have set a patient record.
Super Awesome Nurse said my scan looked amazing. I asked her if my brain would get an A grade (if I was being graded). She said that I’d get an A+++++. Brett commented that my grade sounded like a positive rating from a successful eBay
Since my last scan in December the tumor has shrunk another 3.3mm–bringing the shrinkage to a total of 6.6mm since May 2009.
What does this mean? This means that, without a doubt, Temodar
chemotherapy works for me. Even though I never had genetic testing done on my tumor, Super Awesome Nurse theorized that I most likely carry the favorable MGMT
gene that responds well to Temodar
. (More about MGMT can be read here
Since I am doing well brain-wise, I can go ahead and have shoulder surgery on March 3. In an earlier post I said that I was having a laproscopic surgery, but I was wrong. The term is arthroscopic. (My bad.) (Did I really just say “my bad”? Sorry. My bad.)
Dr. Z, the shoulder surgeon, had me watch an animated video about the surgery and it was really cool. I wanted to share it with everyone so I went to YouTube looking for similar footage but could only find footage from real
surgeries. I started to watch one of the videos and couldn’t go past the first few seconds. Brett said, “You might want to wait until after
the surgery before you watch that video.” I think he is right, but if anyone else in interested in what happens, here’s a video I couldn’t watch
(but I will come back and watch it next week).
Back to the neuro-oncology appointment on Wednesday… I told Super Awesome Nurse about some weird sensations I’ve been having lately. The best way I can explain it is that my brain has been tricking me into thinking that my right hand doesn’t exist. Imagine this:
I am sitting on the couch watching TV while eating Wheat Thins out of the box. My eyes are focused on the television program but in my peripheral vision I am able to navigate my hand to the box to grab some crackers. As soon as my hand goes into the box my stomach drops into my knees (i.e., roller coaster sensation) because my brain tells me that my hand is ‘missing’. I pull my hand out of the box and as soon as I see my hand I feel better. I think, “That’s weird.” So I go back to watching the show and forget about the whole hand thing. As soon as I put my hand back into the box to grab more crackers (and can no longer see it in my peripheral vision) my brain freaks out again and tells me, “You have no hand! Where is it? Find it!” And it is not until I look at my hand that my brain is reassured that the hand exists.
It might sound strange (or sick) but I am fascinated that this happens to me. Logically I know my hand is fine and that it is still attached to my body, but I think it is interesting that I have some false wiring my parietal lobe (leftover from the last craniotomy). Hey–I am not complaining. It could be far worse.
Super Awesome Nurse confirmed that what I was experiencing was completely normal considering where I had my surgery.
After the appointment in Redwood City, Brett and I stopped in Berkeley to have lunch with another brain cancer badass: Liz Z.
Liz and I have the same medical team with Kaiser and have been messaging each other through Facebook since last summer. She is close to my age, and is further along in the recovery process than I am. She has gone through radiation and Temodar chemotherapy and is now in that crazy phase where she gets a MRI of her brain every few months and watches and waits.
Liz Z. is very cool and she is going to join me to create The Liz Army team for the Bay Area Brain Tumor Walk to raise money for the National Brain Tumor Society
. More will be written about the Walk in the near future…