New Neurosurgeon, New MRI Scheduled

Just snuck and took a video in my first neurosurgeon's apppointmet at Swedish, in Seattle. At the end of the video you can see a slice of my brain, which includes the brain tumor. Yuuuuck!!! It's gross. Every. Time. I. See. It. The image is from back in April, so it's not even current.

On this Thursday, I have a MRI and cerebral fluid scan to evaluate the growth, and see how much blood is going to the tumor. The fluid scan tracks the metabolic activity which requires more blood than regular tissue.

Will meet with a new neurooncologist after the scan. Then I will upload my images to UCLA's system and hope I get in for next Wednesday's tumor board. It's frustrating that they only review cases once a week. If there's a backlog it can take weeks, even a month, to get results on treatment recommendations.

Big day today, but an even bigger one on Thurs. Fingers crossed that all of my little issues are treatment effects, not tumor growth. I believe in miracles. And in my opinion, it only takes one to change your life.

UCLA Tumor Board

Morning Guys!

Usually you never want immediate results from your doctor. Fast phone calls after an appointment or scan is often because they have something report. You never want something to report. That being said, I received a phone call from UCLA Neurosurgery yesterday morning. They had received my radiology report (in record time - it usually takes weeks) and they were emailing me instructions on how to upload the images. (Good thing I hadn't mailed the disk yet!) They recently upgraded their computer system and after a dead end at the library, I was able to go to my friend's house and upload the report. It took a total of four minutes! Talk about fast. That's way better than the several weeks it usually takes. It's not that the US mail takes that long, it's the web of the UCLA mail department, then the physical disk has to be uploaded by a UCLA employee. And since I was able to bypass all that noise, and uploaded it on a Tuesday, I was told that my brain scan will be up for review today at the tumor board.

Now, we were pretty excited about the UW radiology report of my brain, but after uploading the images, I scrolled through my brain and was reminded of how huge the tumor is. The amount of haze. The thick white area, and the diffuse area which spans, probably, a fifth of my brain matter. It's disturbing. And scary. After the last MRI we chose not to look at the images, it was too upsetting. That means it has been a year since we looked inside my brain. Naïvely, I keep hoping that the tumor has shrunk, but no such luck.

If we're lucky, we should have an update on the status of my tumor from UCLA later today, but most likely it will be tomorrow. There are a lot of patients who will be looking for their results. Lots of anxious people. It's amazing how these results can completely change the trajectory of your life. Sometimes I feel like I'm living in a labyrinth. That I'm constantly standing in the front of two doorways. I never know what's behind them. I never know where I'm headed.