"Don’t try to make life a mathematics problem with yourself in the center and everything coming out equal."

 The human mind is impressively capable of erecting walls. These past few weeks, we have been able to mostly ignore what is happening and return to a routine of cooking, picking up children, working, reading, sleeping, etc. Then, last week, sitting in the neuro-oncologist's office at DFCI, we were again reminded of the futility of ignorance. He said, "If you do nothing, the tumor will eventually affect your ability to speak and move the right side of your body." And just that sentence, being reminded of the inability of walls to actually enact change, brought us out of the numbness of routine and back into the unpleasant reality we are actually living in. 

I have realized that I am a control freak. I get very anxious if I don't feel in control of my life. A tumor is the essence of loss of control. I was relishing the calmness of control over small moments- cleaning the living room, planning a data analysis. However, it was merely a dream. We cannot ignore this. We cannot do nothing. Action is required of us, as terrifying as it is.

So, here are the updates demanding action. 

Eric saw the neuro-oncologist at DFCI. He first reiterated everything we already know about the situation, which is, briefly, as follows. 1. We aren't totally sure what this is in Eric's brain. It is surrounded by vasogenic edema, and is taking up about 1/8 of his brain, rooted in the left front cortex. We know it is swollen because it lights up on T2/Flair on MRI, on which water is bright. It doesn't take up contrast and is dark on T1 images, meaning the blood-brain barrier is not disrupted and making a glioblastoma very unlikely. It looks most like a grade 2 or 3 glioma (grade 1 is typically in children). 2. Grade 2 glioma, the best case scenario, could be an astrocytoma or an oligodendroglioma. Oligodendrogliomas are relatively benign, and full resection may be near-curative (low risk of transforming to higher grade). Astrocytoma would require additional therapy with an IDH inhibitor post-op. In contrast, a grade 3 tumor would require chemo and radiation after surgery in addition to the IDH inhibitor, I think. Prognosis is most dependent on genetics and degree of resection. 

The neuro-oncologist felt that having the surgery done by a neurosurgeon with specialized tumor training was very important for the prognosis. The neurosurgeon at BMC operates on a lot of glioblastoma but not as much glioma, which is important because glioma tissue can look very similar to healthy brain, and is much more difficult to resect than the obvious glioblastoma tissue. Thus he recommended a surgeon from MGH or BWH. He set up a pro-bono appointment with the chief of MGB neurosurgery, who recommended additional fMRI (though he couldn't see the BMC fMRI due to software issues) and awake surgery. He doesn't do biopsy typically as the tumor can be heterogeneous so it can be misleading, and wouldn't change the fact that surgery is essential. Given where the tumor is, he suspected a supplementary motor syndrome would be possible, in which you can't speak or move half your body for weeks after surgery. Regardless, Eric would need to be admitted for around a week at least.

Then, we saw the BMC neurosurgeon again the next day. He said he felt very comfortable doing the surgery, but that it would be difficult, as once you start operating the margins of the tumor are not as apparent and can move, and they rely so much on preoperative mapping since the tumor looks like healthy tissue. Any shift in the tumor can make the mapping less reliable. He also said he prefers to do a biopsy first so he knows what he is dealing with, but it is also reasonable to do just the full resection. 

Then, we spoke to our friend, who is a neurosurgeon. She said that she highly recommended a glioma-trained neurosurgeon. She also ran it by her friend and mentor (a glioma specialist), who said that subcortical fMRI mapping and intra-operative mapping/awake surgery were essential. He actually said we should travel to Texas or Michigan to get the best outcome.

To add a wrinkle, as mentioned, our insurance only covers BMC at the moment. We can upgrade to the PPO to take effect January 1, so Eric could have the surgery in January. Some doctors have told us it's fine to wait until January, as the tumor is likely slow-growing. Some have said it may be okay, but they would want to do more monitoring (like a biopsy or fMRI) to ensure it's not more aggressive. Some have said they wouldn't feel comfortable waiting (but if we didn't wait, we risk the BMC non-glioma neurosurgeon possibly not doing a full resection, which greatly impacts survival). 

We are feeling very overwhelmed. I guess this is probably how most people feel when dealing with the medical system. As insiders, it has been easier for us to navigate. But now we have a few too many opinions and aren't sure of the right thing to do. Get it out now with the less specialized surgeon? Wait until at least January and get it out at MGB, but risk growth if it's more aggressive than thought? Fly to Texas where we have no family and Eric would have to be admitted for potentially weeks? 

We have tentatively settled on upgrading the insurance and getting the surgery done at BWH in January (if possible). But that gives it three more months to potentially grow and cause more seizures. It's unfortunate that insurance is the barrier to care, but a neurosurgery followed by weeks-long admission would likely be 100k+ without insurance, so even with everyone's generous donations, we would be unable to afford it. So we absolutely have to wait until our insurance will cover the surgery. 

We have to weigh risks and benefits at this point, and it seems like the risk of waiting to do the surgery is worth the benefit of potentially years more of life with an improved resection. However, it is all a game of dice in the end, and it's possible the BMC neurosurgeon would do amazing, and equally possible the BWH neurosurgeon will not do great. You just never know with life.