Our cancer journey

 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...

Cancer makes explicit all of the implicit assumptions. Once you start to peel away all the things you take for granted, you realize how truly fragile life is. Life is a glass flower that even breath could shatter. You assume your husband will be the same tonight as last night. That he will walk, talk, laugh, love. The possibility of anything else is absurd. But cancer steals that certainty. It makes you realize that the life you take for granted is built on a foundation of thousands of assumptions about the successful workings of the complex differential equation of your body, your life, and your universe. In truth, if one tiny strut of that foundation cracks, the whole thing could come tumbling down. He may not walk tomorrow at this time. He may not talk. His personality may change. He may have to relearn those things, just like our 1-year-old daughter.  Nobody knows. Somewhere, now, they are preparing to open his skull, to expose his brain. To them, it is just an organ to be diss...

 I am privileged to have spent much of my adult years without toxic stress. There are studies that show that toxic stress (fear of safety of our body, not knowing if we can afford basics like rent or food) actually changes epigenetic signatures. These changes in epigenetics can affect the germ cells in our body. If you are a pregnant woman, it can affect the germ cells in the fetus. Stress can change the genetics of your grandchild this way. It makes poverty and domestic violence a generational affair. As we learn more about genetics, we learn more about the nuances of genetic regulation. It used to be a clear dogma- DNA to RNA to protein. Now we know it's so much more complex, with hundreds of tuning layers in between those steps. I also grew to appreciate the effects of toxic stress more after I read "Between the World and Me," by Ta-Nehisi Coates a few years ago. This is a book about how black identity is a literal threat to the body of a black man. When there is a thr...

It's been almost 2 months to the day since I had my seizure and I learned I had a brain tumor. These past two months have been, in a word, frustrating. Don't get me wrong, there has been so much good and so much love directed our way, but that's not what I want to talk about. Perhaps I'm giving into base instincts by venting my frustrations, but they have to go somewhere. I can't keep them inside any more. It's just after midnight and I'm sitting alone on our living room couch, literally seething with frustration and a host of other emotions, but frustration seems to trump them all.  Lindsay's last blog post detailed the status of my medical journey, so I won't belabor the details here (to spell them out in more detail would only frustrate me further). Suffice it to say that 2 months after my diagnosis, I still do not have a surgery date. I likely won't have surgery until January, when I can upgrade my insurance to a plan that covers neurosurgery...

 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 can...