First Steps

I can't easily type because I went all gung-ho around the house yesterday, trying to distract myself as we await further information from UCLA about my recurrence, and I sliced myself.

As we wait, I grabbed a copy of all three of the most resent MRI scans (I keep copies of everything) and we shipped them to an independent radiology reading facility that we've used in the past. Hopefully they can give us more information about what's going on in my brain. 

It's always hard when doctors don't agree about your condition, but (as a few people mentioned) it's better than a definitive recurrence. That implies it must not be obvious growth. Either that or someone was asleep at the wheel.

I'll keep you guys posted on anything we find out along the way.

Shit Shit Shit. Another Recurrence.

My my mind is all over the place. I don't quite know what to do.

Crap. CRAP. I just got off the phone with a representative from UCLA Neurosurgery. It looks like I have my third recurrence. I don't understand how University of Washington could have reviewed my most recent scan to past scans and felt there was no recurrence, yet UCLA is confident the tumor has grown.

I need more information. I've asked for copies of the notes from the UCLA tumor board, and their radiology review. I've asked for a callback from one of the doctors or physician's assistants, since Dr Liau is too busy to handle me personally anymore. I worry that this is going to turn into a thing. A frustrating thing where I will need more of their scientific reasoning, and proof that the tumor has grown. That I will need to see measurements, and assessments. What about a DOPA-PET scan. Remember that scan that I took in LA back in October of 2013? It's a special scan for low grade gliomas that will differentiate between tumor and scar tissue, clarifying the MRI images. Why didn't they ask for that? Do they think that my tumor has advanced in stage? (Uh-oh.)

I'm not surprised that the tumor has grown, it's what they do. But I'm not going to start a treatment program based on an office worker's forwarded information. I want to talk to the doctors, and the decision makers. I want to talk to people that can answer all of my questions. I am a patient, and I respect my doctors, but insurance, and our money goes to pay their bills. I deserve answers. Doctors are just contract workers. I think it's always important to treat them with respect, but I also believe that we should be treated like peers. If I want/need more information, I deserve to have it.

They would like me to start radiation, and possibly enter into the following clinical trial (clearly I'm going to need more information):

Study of Orally Administered AG-120 in Subjects With Advanced Solid Tumors, Including Glioma, With an IDH1 Mutation

Phase: Phase I
Type: Biomarker/Laboratory analysis, Treatment
Age: 18 and over
Trial IDs: AG120-C-002, NCI-2014-00868, NCT02073994

Here comes another cancer trial, with it, a new motto.

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.