It’s been a while since my last update.

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 effects at all. My neurooncologist has patients who have been on it for 2 or 3 years and they say it's like taking a vitamin every morning. Fingers crossed it stays that way.

The landmark clinical trial that got vorasidenib approved in low grade astrocytyomas and oligodendrogliomas was the INDIGO trial, whose results were published in 2023. Briefly, among 331 patients with residual or recurrent IDH mutant gliomas, the clinical trial demonstrated a median imaging-based progression free survival time (translation: how long before disease progression of any kind occurred) of 27.7 months in the vorasidenib arm vs 11.1 months in the placebo arm. That translates to 2.5 times longer for folks receiving vorasidenib vs placebo (pretty good!). However, it's important to note that I would have been excluded from this study given I don't have any residual or recurrent disease. That's all to say we don't yet know how this medication will effect my survival in my particular situation (i.e., after a successful gross total resection). It should theoretically prevent future tumor growth, but we just don't have enough long term data for people in my situation. I haven't bothered to ask my neurooncologist for my prognosis; I know he will say it's hard to predict, every individual is different, it's hard to predict now that I'm taking vorasidenib, etc. Which is all true! But I've looked into it, and the available data suggests I can expect to live about 20 or 30 years (maybe longer now that I'm taking vorasidenib. Who knows!). I haven't really wrapped my head around that. It's long enough that I don't think about it every day or even every week. But it's also short enough that I try to soak in the little things. I'm far from perfect at it, but I try to savor my kids' hugs and just exist in the moment. The same goes for my wife's laugh, phone calls from my parents, phone calls from my siblings, and so on. But it’s all really a crap shoot. I’ve read about people with the same diagnosis who also had a gross total resection who have had a recurrence in as little as 3 years and others who have had no recurrence at all after 18+ years. You just never know.

I’ve been back at work since early January.  As many of you know, I’m a second year family medicine resident. I’m happy to say that my residency program has been extremely supportive throughout this entire journey. I have no doubt that my program director, associate program director, site director, and all the leadership of my residency program have my best interests at heart. My program director actually commented to me earlier this week that I have a tendency to minimize my situation a bit. Truer words have never been spoken! Haha. I think part of it is my personality. I’m the kind of guy who shows up, puts his head down, and gets to work (at least I hope I am). I don’t tend to complain or draw too much attention to myself. So you can imagine that I’m struggling with the idea of needing ongoing accommodations at work. So consider this my attempt to explain with candor what my experience has been like since returning to clinical work. 

If I had to pick one word to describe the past 3 months it would be fatigue. The first month or so back at work I needed at least 1 daytime nap. I’m now able to stay awake for the entire day (progress!), but I find that more often than not I am exhausted by the end of the day. Obviously there are lots of factors that can contribute to feeling fatigue. I’m not only a resident, but a father to 3 young girls. And as you can probably guess, they can be a lot. Whereas before my surgery, I could try to get some work done while they were awake (write notes, work on my inbox, etc), now I don’t even try because I’m just too tired. I occasionally have energy to do some work after they are all asleep (around 9:30 pm), but those days are few and far between. It tends to be worse when I am seeing patients in clinic. I don’t think that’s a surprise, since that is fast paced with lots of multi-tasking, lots of time in front of a computer, and involves me presenting each patient to a preceptor (which I struggle with due to me lingering speech issues. More about that later). I have found that ever since my surgery, I am just cognitively slower. It takes me a lot longer to recall a medical fact or connect various ideas together in real time. This is very frustrating and discouraging. Especially because I know what my mind was capable of before the surgery! I’m only seeing 4 patients per clinic session (i.e., per 1/2 day of clinic), which is about half the number of patients I was seeing before my surgery. However, I still find that my energy levels and fatigue are highly variable and the time I spend with each patient can take anywhere between 40 minutes to an hour. Some of this has to do with the fact that I now have to use an interpreter with nearly all of my patients. My clinic population is virtually all Spanish speaking patients, and ever since my surgery I just don’t feel comfortable speaking in Spanish. I can still understand it perfectly, but I have trouble speaking it and conjugating the verbs in real time (again, that cognitive slowing I was referring to). I have trouble enough speaking in English, so Spanish is out of the question (again, very frustrating!). My speech has come a long way. Immediately after my surgery I could barely string two words together. Literally. Now I think patients don’t even notice I’m struggling with my speech. But I know. Inside my head, I’m concentrating very hard to find the right words to say. That has gotten a lot better, but it continues to take effort and mental energy. My speech issues tend to be more noticeable when I am speaking in front of a crowd or if I am nervous or experiencing stress…which are not uncommon situations in residency. Due to my speech issues, I often feel isolated and lonely when I’m among a group of people. I think it’s likely because I can’t keep up with the conversations going on. By the time I think of what to say, the topic has already passed. I tend to just react to what others are saying. The upside is that I’m now a great listener (Let’s be honest, I probably talked too much earlier). That said, I think a happy medium would be ideal. 

I reached out to my neurooncologist this week to explain my situation in more detail. He appreciated my candor and said my observations were spot-on and exactly what he would expect from anyone going through what I have (always good to hear some validation). He thinks I could potentially benefit from a trial of a CNS stimulant, and referred me to palliative care provider to further discuss symptom management. I have an appointment to seem them at the end of April. Hopefully they can figure something out. I also recently reconnected with my therapist. I had paused therapy after my surgery while I was still working on getting my speech up to speed. She is lovely and I appreciate her insights. Speaking of appointments, I sure do have a lot them. It seems every week or so I’m seeing a neurologist (for my seizures, which are luckily well controlled), working with a physical therapist (for the scapula I broke), a neurooncologist (for my brain tumor, duh), a radiologist (for my regular MRIs), among others. I try to schedule appointments for after work whenever I can, but that isn’t always possible. The appointments alone are a headache to coordinate. 

I will confess that in my lowest moments I have thought about leaving medicine altogether. Quitting residency and moving on with my life. But then I remind myself that I’m only 5 months removed from surgery! 5 months removed from having a chunk of my brain removed! The progress I have made is truly incredible. Yes, I have hit a metaphorical wall and my progress has slowed, but I tell myself that I need to be patient with myself. Slow and steady. I still have good days and bad days, but I’m trying to focus on the good days (which is a hard thing to do for a natural pessimist). 

I start on our inpatient medicine service next week. I’m nervous. It’s the first time I’ve been on that rotation since just before my brain surgery, and even then it was only for a week and a half (Don’t worry, I got plenty of reps on our inpatient medicine service last year while I was an intern prior to my diagnosis). Luckily, I will now be supervising an amazing intern who will handle most of the day to day tasks. On the other hand, that means more responsibility and big picture thinking. I’ve only ever supervised an intern for that week and a half when I was previously on inpatient medicine (which is pretty much unheard of at stage of the year for someone in their second year of residency), so that is yet another role I need to adapt to. That’s the unique thing about residency. Every 2 to 4 weeks you start a different rotation, which is basically like starting a new job. Yes, it’s all medicine, but you are either starting a brand new rotation (e.g. cardiology, geriatrics, sports medicine, etc.) or going back to a rotation you haven’t done in a few months. That’s difficult enough with an entire brain, let along one that is still healing from surgery. I suppose I won’t know how my body will respond until I dive back in. Don’t worry, my program director and I have already discussed checking in early on during my inpatient rotation and making any necessary adjustments (e.g. perhaps leaving early on certain days, building in breaks, etc.).

I’m going to wrap this up. This post has taken me several evenings to write and I feel the quality is deteriorating the longer I go on. If you happen to see me in person in the coming days, don’t be shy to ask how I’m feeling (if you feel so inclined). Feel free to ask how my treatment is going and how my regular MRIs are looking (I get them every 3 months currently). You have my permission to use the term “brain cancer”!  I know I don’t look like the typical cancer patient you might imagine in your mind, but I do have it and you can name it. I think the more we talk about cancer comfortably in the open, the less stigmatized the condition becomes. But if you’d rather not, I will respect that as well. 

Ta ta for now,

Eric