The path is always changing

The past 48 hours have been full of excitement. After all, what's more exciting than the unfolding saga of Shannon's GBM journey?! Yesterday Lois and I were at the Neuro-ophthalmologist's office for four hours, although it felt like longer. The office was in a nice mid-rise and had a fabulous view of Houston from all angles.The doctor was a force to be reckoned with. She was evaluating me while simultaneously teaching her students. At one point she asked her student a question and demanded the answer. When the student didn't answer, she said, "If you know the answer, tell me. If you don't know the answer, go find out." When the student hesitated, the doctor said, "If you don't know the answer, go right now, find out, and come back to tell me the answer!" I was so impressed with how quickly the student scurried out of the room that I started to wonder if this method would work with marketing graduate students. I can hear me now, "What does it mean that this statistic is non-significant? What does it tell us about our hypothesis? What other statistics could we use to bolster our stated findings? If you don't know, go figure it out!"

The only thing I didn't like about the doctor was her insistence that my lack of vision is dangerous to my health and I shouldn't be out walking alone (something most of my caregivers harp on me about). This validates both Lois and Jason, who not only insist on walking on my left, but refuse to let me ride a bike. That's right, I can't drive. I can't ride a bike. And now I can't walk. These people will not rest until I have no freedom.

There were so many visual tests, some that I'd never seen before and some that obviously would make most people nauseous. The good news is I didn't vomit, the bad news is that they found some differences in the structure of my left retina versus my right retina (probably unrelated to my tumor), and the unsurprising news is that I still have hemiaopsia. In other words, my left visual field in both eyes is dark. The upper left is the most dark (this is apparently called "pie in the sky"), but the lower left is also about 50% dark. Therefore, I'm missing A LOT of information. The worst news is that she doesn't think this will ever correct itself, however, she can correct it with Peli glasses, which are a type of prism glasses made specifically for my type of situation. Unfortunately, they are really, really ugly. At least Jason won't have to worry about my many admirers anymore! More good news is that I will be able to drive again with the glasses, so Gertrude is getting out of garage jail! By the time we got out of the office, my eyes had been numbed and dilated and I was exhausted and hungry, so Lois brought me home. The next time I will see them is March 22, when I go back for a few more tests and get fitted for the Peli glasses. I'm not sure how long it will take to adjust to the glasses, but I plan to just power through so that I can gain independence faster. 

On the tumor front, I logged into my account this morning and saw that my team had finally posted the radiologist's report from last week. The official report was better than the "eyeball estimate" that we all cobbled together last week. The official impression was: "minimal progression since 11/22/2017, stable findings since 12/20/2017. Stable flair signal." So, it didn't grow (enhance) since the prior scan and grew minimally (insignificantly) since the scan in November. Further, the illumination (flair) is stable, so it's not replicating wildly and rapidly (when flair increases, this is an indicator of denser/more problematic tissue). So that's some pretty good news since I wasn't really doing much as far as treatment goes between November and February and things are still stable.

As stated before, it is always assumed that there is something bad in there and that it will come back. Therefore, we are always looking for the next treatment. I didn't hear from my team directly about their ideas on what to do next, however, on Saturday I woke up to a Saturday morning surprise. I decided to check my online charts and saw that I was scheduled with a doctor in neurosurgery who I'd never heard of. I looked him up and saw that he does something called laser interstitial thermal therapy (LITT), a fairly new (in the last 5 years) and minimally invasive technique for going in to laser small areas that are still lighting up on the MRI. We are scheduled to see that doctor tomorrow (Wednesday) and, of course, we have a million questions about it. What I know so far is that they drill one small hole and use real-time MRI to guide the probe. The probe uses heat to kill the bad cells from the inside out, while simultaneously using cold to cool down and protect the good cells that we'd like to keep. I'm hearing my mom's voice echoing in my head, "Yeah, you need that like you need another hole in your head!" It just seems like it fits really well here, little did I know when I was growing up that this phrase would be prophetic! I actually think this is worth consideration and I will try to learn as much as I can and share what I know as I learn it. I'd say that overall, the excitement of this last 48 hours or so has given me renewed optimism and hope, so let's all hope that we can find out if this is the right direction moving forward. So many ideas, so little time...must keep going!