Our cancer journey

It's been a while since I posted on here. As you all probably know, I underwent brain surgery on October 30th. Great news #1: They were able to remove the entire tumor! (However, due to the invasive nature of brain cancer, there are certainly microscopic tumor cells left). Great news #2: the tumor turned out to be a low grade (grade 2) oligodendroglioma! Those two pieces of news are pretty much the best case scenario when it comes to brain cancer. I don't currently require any chemotherapy or radiation. I actually had the option to just monitor for signs of recurrence with regularly scheduled MRI scans. However, after discussion with my family and neurooncologist, I've decided to start a medication called vorasidenib. It's not chemo or radiation, but rather a targeted therapy that blocks a mutated enzyme in my tumor cells (IDH2 in my case) that translates into gradual tumor arrest and shrinkage. I started taking it in February, and so far I haven't noticed any side ...

Just going to put my thoughts out there, but I promise I will also include a real update on Eric and our family in the midst of the cacophony.  Many, many years ago (as in high school, so forgive me if anything I say is not totally accurate), I learned about unstable versus stable equilibria in systems governed by differential equations. Differential equations are essentially mathematical models of real-world continuous change (water dripping, stock markets shifting, telomeres decaying). In a system at stable equilibrium, like the average human body, a small nudge in one direction is slowly corrected back to the equilibrium by countering forces. You get sick with a cold, you get a fever, but your immune system responds, and your temperature goes back to 98.6. In an unstable equilibrium, even a small displacement causes the system to accelerate away from equilibrium and can ultimately result in resonance/oscillations around the equilibrium that ultimately break the system.  Bef...

It's been a while since I've written in here, and things have been busy. We went on a lovely vacation with my parents to Costa Rica over Christmastime, which was amazing. Then we came home to frigid Massachusetts and everyone promptly got the flu. Since then, life has been its usual jumble of sick children, work, and daycare drop-offs. But I wanted to give everyone a brief update. Eric and I have met with several doctors to discuss the risk-benefit calculus, and I think he has decided to start the IDH inhibitor medication, Vorasidenib. We aren't sure yet if insurance will cover it, as Eric had a great surgical resection, but thanks to everyone's kind donations, we will be able pay out of pocket if necessary. There's a chance the medicine could keep the tumor from ever regrowing, which is inevitable eventually if he doesn't take it, so we are willing to risk the theoretical possibility of it causing a different cancerous mutation. Cancer cells are devious and wil...

 Like a picture slowly coming into focus, Eric is improving every day. He is talking more, awake more, more like himself. He is still confused about some things that would not have previously confused him and has some word-finding difficulties, but night and day compared to three weeks ago. It turns out patience is the best medicine for anxious wives. The speech therapist has been working wonders.  Regarding the tumor, we have mostly good news! It is a stage 2 oligodendroglioma. It has an IDH2 mutation (will respond to targeted therapies when needed), a TERT promoter variant, and the 1p/19q codeletion that is the hallmark of the less aggressive oligo (versus an astrocytoma, which has worse prognosis). This is overall good news (though TERT promoters may worsen prognosis in higher grade tumors, as far as I can tell, they don't impact prognosis for low grade oligos). This means that with all these favorable genetics, the median survival may be over 15 years, and that was before ...

 I shouldn't complain. Things are actually good. The post-op MRI looked good. The surgeon thinks he got the whole thing out. If it turns out to be an oligodendroglioma (which he thought it looked like, fingers crossed), then the plan will likely just be frequent MRI monitoring for recurrence, without need for chemo/radiation/biologics.  However, life has changed. I knew that brain surgery was a big deal, but I guess I was hopeful that it wouldn't take long for Eric to feel like himself again. However, that hasn't been the reality. He is talking a little more, but still has a lot of aphasia (word finding difficulties, jumbled sentences, trouble focusing on conversations). He is moving well, except for a little left-sided neglect and some balance issues. He is getting home PT, OT, and will be getting speech starting next week. He sleeps about 16 hours per day, though, and when he is awake, he moves around a bit like a ghost. He is like the PS2 version of his usual PS5 self. T...

 Overall, things are good. The surgeon said he had to peel tumor off the motor area, but he thinks he was able to get it all off. He doesn't think he damaged any motor or speech areas during the surgery. Eric didn't have any seizures and was able to stay awake during the brain mapping portion, which is good as they were able to get an idea of the extent of the tumor prior to sedating him for the resection. We will know more after the MRI today. The extent of resection is important for prognosis, but even with full resection, microscopic bits are left, so they may do additional therapies (chemotherapy, radiation) or just continue close monitoring for regrowth with MRIs. The next steps depend on the tumor histology and genetic results.  Eric is doing alright. He has had a little headache, but not much pain. He is sleepy and gets tired after a few minutes of concentration. He had PT, OT, and speech therapy come this morning. He has some deficits on the left side, more with fine m...