Brief update

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 will accumulate mutations whether treated or not, so why not treat them. Glial cells are slow-dividing, so we are hoping that means there won't be as much selective pressure from the treatment as has been seen in hematologic cancers (in which the treatment can cause additional mutaitons). So far, the data in gliomas does not suggest that IDH inhibitors cause any additional cancer mutations/progression, so we are going to trust in the science. 

Eric continues to improve. He has aphasia that worsens when he is tired, but will be continuing with speech therapy. I would say he has the equivalent now of mild cognitive impairment. He struggles with multistep instructions and multitasking, and is easily overstimulated. He still has all his medical knowledge, but it is definitely going to be challenging for him to return to work in the hospital as a resident. He restarted clinic last week with a lighter load and has been doing alright, with AI helping with note writing, as his typing is still a little slow as well. He will start an orthopedics elective after that and then a VA rotation, so won't have a hospital rotation for several weeks, thankfully. We are hoping that by the time he is back there, his brain will have recovered even more, and it won't be as challenging or exhausting for him. His program has been very supportive in giving him a ramp back to normal residency rather than dropping him back into things. Having a large chunk of his brain taken out was definitely a big neuropsychiatric hit, and the recovery process has been very slow, but still steady.

I am hanging in there. Eric has been able to help progressively more around the house and with the kids, which is great, but he does get tired very easily, and nothing is more over-stimulating than three children yelling and bouncing off the walls. He is finally able to drive again as of this week (six months since the seizure), which has also made life way easier. I would say we have reached a new equilibrium, but are still on the uptrend, and hoping to eventually make it back closer to our old equilibrium before 2026 is over. 

Thank you all for your support, kind thoughts, donations, and prayers. We have felt them all.  <3

Comments

  1. AnneliseJanuary 15, 2026 at 10:16 AM

    Great to hear things are going alright for you guys!! Ugh, going back to residency must be super duper hard I can’t even imagine. Props to Eric.

    Real question though, did you succeed in your mission to see a wild sloth?

    ReplyDelete
  2. LindsayMarch 4, 2026 at 12:37 PM

    This is very delayed- but yes I did! we saw many sloths.

    ReplyDelete

Post a Comment

Popular posts from this blog

"you cannot protect yourself from sadness without protecting yourself from happiness"

On the day before, I read a Billy Collins book, and for a few hours everything was beautiful. But then, you had a seizure, and that was not beautiful. The next night, I couldn’t sleep, even though I was spent. I placed my hand on your head as you dreamt, palm above the tumor, and paced through five stages of grief. Now, there is still beauty: a burning blue sky, the cut of a blackbird wing across the sun. But I can't stop thinking about the cancer, and how I don’t know when it will wake, and pull you under. but then,  I guess, no one ever does. ----------------- I still have a bandaid on my leg that I put on before the cancer diagnosis. It was that recent. Not that I haven't showered since then, but I guess bandaid technology has reached an apex. I was shaving, using a relatively new Venus razor but one that recently fell apart a little, and nicked my skin. Not a big deal. But it feels like a different person put on that bandaid, in a different life.  One thing many people no ...
Read more

A surreal 12 days

It has been 12 days since I was diagnosed with a brain tumor, and I finally feel ready to share a few things in writing. Be forewarned that this will not be anywhere near as beautiful or eloquent as Lindsay's previous post. It will be "word vomit", an effort to get my thoughts and feelings on the page in an effort to process and ponder them intentionally. As a planner/second-guesser/all-around anxious perfectionist, just writing what comes to mind with little editing has never come easy for me, so thank you for bearing with me. Over the past 12 days, I feel like I have experienced a lifetime of emotions. To be honest, when I had my seizure early last Tuesday morning, July 22, I initially felt a sense of relief. After all, I finally had an answer to why my scapula had mysteriously broken 3 months earlier. Maybe it was denial, maybe it was what we call "premature closure" in medicine, or maybe I was still experiencing some post-ictal confusion, but I just assumed ...
Read more

“Hope is the pillar that holds up the world.”

Some good news today. First of all, the snails at the insurance company have approved the out-of-network exemption for the neuro-oncologist at Dana Farber, and now we are just waiting for insurance and DFCI to be on the same page so we can schedule the initial appointment. Second, Eric was able to get the fMRI scheduled for late-August, and then it got moved to 8/11. He saw the neurosurgeon on 8/12, who said that while some surgeons prefer to do the biopsy and resection in the same surgery, he prefers to do the biopsy stereotactically and then later do the surgery once the pathology/genetic results are back so he can be certain what he is resecting. I guess if it's a very slow-growing tumor, it won't make much difference, so we are trusting his expertise.  It was strange to hear that they would do a stereotactic surgery, because that is how I used to do surgeries on mice in graduate school. I was injecting microRNAs targeting the Huntingtin mRNA into mouse models of Huntingtons...
Read more