"It's half an inch of water and you think you're gonna drown"

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 at Mass General Brigham. At the suggestion of a kind health insurance representative, we have submitted one last ditch insurance exemption request to my insurance company, making the argument that although I have access to neurosurgeons in my current health insurance network, they do not have the needed expertise and specialized training that would afford me the best chance of survival and progression free outcomes. If the request is approved, I could have my surgery sooner. It's a reason to hope, but we continue to plan for surgery in January. In the meantime, my neurooncologist at Dana Farber wants me to get at least two more brain MRIs to make sure the tumor isn't growing. If it is, then I need to have surgery right away at whatever hospital my insurance is willing to pay for (at that point, beggars can't be choosers).

I confess that I find myself increasingly thinking selfish thoughts. For instance, "I bust my butt every day taking care of patients in clinic and the hospital, but when I'm the one who is sick, I can't get the care I need? What the heck?!". Another fan favorite: "I've done everything society told me to do - I went to college, pursued a noble career (I threw in a PhD too along the way just for fun!), I'm raising a family, I try to do good in the world - and society hasn't fulfilled it's end of the bargain!" I know these are juvenile complaints. Trust me, they sound all the more ridiculous as I type them out. I know that I live a life of incredible, incredible privilege, and this challenge I am facing pales in comparison to what so many others are facing. To harken to the title of this blog post, I recognize that in the grand scheme of things I am but wading in "half an inch of water". And yet, at the same time, it still feels like I'm gonna drown (shout out to John Prine, my favorite songwriter, who penned those words). 

I feel emotionally exhausted. I am on vacation from work this week, and I have never before looked forward to a vacation like I did this one. Since my seizure, my residency program has been very accommodating, and they let me slowly ramp up my work schedule. However, this past month was my rotation in the adult emergency department, and it was rough on me. I had to call out of work on three occasions. The first time I called out after hitting a curb at 15 mph with my electric scooter and face planting on the side walk. Thankfully I walked away with just a bloody nose, scrapes, and bruises (I'm still annoyed no one driving by stopped to ask if I was okay. Shame on you, Newton). The second time, I reluctantly called out because I was physically exhausted after working a really tough 10 day stretch and emotionally rattled by yet another disappointing neurosurgery appointment. The third time I called out was just a couple days ago. I had a really severe headache that would not go away the night before my shift. Severe headaches are kind of scary when you have a brain tumor because they can be a sign of increased intracranial pressure, which can be very dangerous. The headache eventually got better, but the doctor's at Dana Farber recommended I take it easy and rest to avoid exacerbating my symptoms. I hate calling out of work. I will never be the smartest doctor in the room, but I take pride in being the doctor who shows up, works hard, is a team player, and is a pleasant person to work with. It pains me that my colleagues have to be called in to cover my shifts for reasons I never would have called out for before my brain tumor. At perhaps that's what really pains me about calling out of work; It's another reminder that I am, in fact, not physically well. Despite my efforts to put my head down and give it my all, there is still a 3 cm x 3 cm tumor in the left frontal lobe of my brain that has left me physically vulnerable. Residency is hard. Residency with 3 young kids is very, very, hard (I make a concerted effort not to complain to my co-residents about how hard it is to be a parent in residency, but by golly is it hard). Residency with 3 young kids and brain cancer is pushing me to my limits.

I'm on vacation, but I nearly broke down into tears Sunday night as I though about all the obligations I have during this "vacation" week. Earlier today (Monday), I had to go into Boston for an EEG (which from a patient perspective, I can attest feels like sci-fi witchcraft). I then had a telehealth appointment with my therapist in the afternoon. And sandwiched in between, for good measure, Lindsay and I had an emotionally draining argument that cast a pall over the whole day (as arguments with those we love always do). On Tuesday,  Quinn's school will be closed for Rosh Hashanah, so she will be home all day. I love Quinn, but it's not the "me-time" I was hoping for (again, selfish thoughts).  I have endless phone calls I need to make (Dana Farber, the insurance company, the radiology department, etc), and on Friday I have a telehealth visit with my PCP. And, of course, looming over all this like some unbanishable spectre are my incomplete clinic notes and inbox messages that fill me with constant angst. I suppose somewhere in between all that I will find some time to relax... Oh, how I wish I could fly away to some remote cabin and spend this week reading books, watching movies, going for walks, and sleeping in. 

I'm sorry this has not been a cheerful post. I'm sorry it doesn't reflect my typical trademark equanimity. I'm tired and I'm frustrated... But I also know that I am loved. I know that I have so many wonderful people in my corner. It's what keeps me buoyed afloat this half inch of water that threatens to drown me. And no one has done that more than my wife, Lindsay. She is in a rigorous fellowship training program, and she has plenty in her own life to stress about as she tries to establish a career as a physician-scientist during a political climate where that has become incredibly challenging to do. She has taken on so much of the household and parenting responsibilities since I started residency, and she has taken on even more in the wake of my diagnosis. As ashamed as I am to admit it, she has also borne the brunt of the fallout from my periods of sadness and frustration. I love her, and I can do better. She deserves better. Thank you to all those who have given her the support I have often fallen short of providing her. 

I hope my next blog post is more uplifting. I pray that I can soon share a surgery date. Until then, we will keep fighting the good fight. Much love, friends.