After getting discharged a second time after getting a blood patch for a spinal CSF leak, we still had a lot of trips to the hospital for appointments over the next week. I still hadn’t been contacted to set up Dustin’s follow up appointments with a neurologist, so I worked on the consults my attendings helped me set up.
July 19th was a Thursday and just a day after being discharged from the blood patch. Dustin was feeling pretty great all things considered. But today we had the pre-scheduled CT guided biopsy for the nodule seen on the CT and PET scan. So just after the unexpected trip to Interventional Radiology (IR) the day before, Dustin was back in IR as an outpatient for the biopsy. Interestingly, it turns out the appointment would be cancelled because they couldn’t find the nodule. The nodule seen was just a spot of inflammation from the cold Dustin had and nothing nefarious. Which was great news in that he didn’t have to have a biopsy of his lung. But kinda scary as more signs are pointing to a primary brain cancer.
Over the next week, I worked on getting the neurosurgery consult set up at the hospital where I worked. On Friday, July 20th, I brought in Dustin’s imaging done at Northwestern so it could be uploaded into the system for review. Dustin’s neurosurgery appointment would be on Wednesday, July 25th which was just a few days away so I wanted it to be in the system ASAP for review.
I also ran into one of my attendings who asked me how I was holding up and how he could help. I explained that I was spinning my wheels because we had no follow up yet. Turns out one of his best friends used to be a Neuro Oncologist at our hospital but had moved over to Northwestern. He immediately rang him up on his cell phone and explained the situation. I gave him permission to give Dustin’s date of birth and MRN (medical record number) so this Neuro Oncologist could look him up. He looked at his scans and said he’d have someone call me to set up an appointment either on Friday or Wednesday. Later that day, the appointment was schedule for Wednesday, July 25th. BOOM.
I’m so incredibly thankful for the help that I received from my colleagues in setting up these consults. Time was of the essence here. But I was also really pissed because these should have already been setup by Northwestern. I shouldn’t have to push to get these appointments set up. They should have been established before Dustin was discharged from the hospital. Sure they said someone would call to set up the follow up…but they didn’t. It’s one of those times where I wonder WHAT THE FUCK normal people do? I’m in a situation where I work in health care and I know how to navigate the system. I have connections. It’s just unacceptable to me. It’s not how I provide care to my patients. Dustin deserved better. Everyone deserves better.
It was frustrating that navigating the health care system was so complicated and challenging for someone in the biz. It pissed me off to think of the patients who didn’t have this luxury. No wonder there were so many disparities in health care. I can see why people give up or don’t want to hassle with it. This was in 2018, shouldn’t it be a little easier for patients to access the care they need? Little did I know that the health care system would become much more complicated to navigate once the COVID-19 pandemic hit.
A few short days later, it was July 25th and Dustin had his appointments with the neurosurgeon and the neuro oncologist. Both appointments were rather informative albeit depressing.
The neurosurgeon explained that the imaging looks like a low grade glioma. He wasn’t concerned that it was CNS lymphoma or tumefactive multiple sclerosis. This guy sees weird brain stuff every day, so his hunch could be trusted. He was also vetted by my chief and the chief of neurosurgery. I knew he was an expert and trusted him. He recommended either a biopsy or a biopsy and awake brain surgery all in one.
Option #1: If we just did the biopsy, it would be a needle biopsy and he’d be home the same day. We’d wait for the the pathology which takes a couple of weeks. If it confirmed a glioma we’d proceed with an awake brain surgery at a later date.
Option #2: Do the biopsy and awake brain surgery all in one go. They would get the specimen directly to the pathologist for a quick analysis of is this a glioma, yes or no. That takes like 15 minutes. If yes, they’d proceed with removing everything they could. Full pathology would result in a couple of weeks.
The surgeon recommended option #2 – no piddling around waiting for a full pathology, just get it out instead of going in twice. Okay, made sense to me. But did I hear that right? Awake brain surgery? Can we go back to this whole awake brain surgery thing?
Dustin’s brain tumor was in his left frontal lobe. This is where his executive functioning is but it also extends into the part of the brain that contains language and some motor function. If they do it while he is asleep, they risk damaging these areas permanently leaving him with possible significant deficits. By doing it awake, they can ensure they are staying away from any critical regions that would cause significant deficits. Dustin would have to undergo neuropsych testing and a functional MRI. The neuropsych testing determines his baseline. The functional MRI shows how his brain functions for critical tasks and how close those functions are to the brain tumor. They use this information in the OR along with intraoperative brain mapping to confirm in real time the function of the brain around the tumor site.
Holy hell that is intense and super scary to have someone poking around in your brain while you’re awake. Damn. Apparently, the brain doesn’t have pain receptors so there isn’t pain during the zapping and cutting. They’d do a block on the scalp so he wouldn’t feel that either.
The neurosurgeon was going to be out for a week or two. But not to worry, because Dustin’s situation is urgent and not emergent. He was no longer experiencing seizures which was controlled by the anticonvulsant. The imaging looked like it was a low grade glioma – so less aggressive. We’d have time to explore our options and make a decision. The neurosurgeon recommended we take no longer than a month to get the ball rolling on either option. Doing the surgery today or in a month would not make a difference in his clinical outcome. Waiting longer than a month would likely impact his outcome.
Well that was a heavy and intense appointment. Now we had to run over to Northwestern for the appointment with the neuro oncologist. This appointment was also intense and informative.
The meeting with the neuro oncologist was similar in gravity and intensity. This guy came at a recommendation from one of my attendings. He assured me he was a great person and provider, but more importantly he’d trust his wife in his care.
The neuro oncologist also sees weird brain things literally every day and also had a strong suspicion that this invader was a low grade glioma. He explained to us a little more of what things would like moving forward. Dustin’s case would be presented to Northwestern’s Tumor Board which is a weekly multidisciplinary meeting consisting of neuro oncologists, neurosurgeons specializing in brain tumors, neuro radiologist, neuropsych, and other disciplines that are intimately involved with brain tumor patients. It’s a pooling of the minds of tons of experts with tons of experience to share their recommendations to establish a plan of action for the patient. Northwestern’s Tumor Board meets every Friday and Dustin’s case was already on the schedule to discuss.
The neuro oncologist went on to explain, they would likely recommend similarly to what the other neurosurgeon and recommended. The plan would likely be biopsy and awake brain surgery given the location. He also recommended doing the biopsy and surgery in one procedure and not splitting it up.
If this invader was indeed a glioma, treatment depends on a few things but would likely include chemo and radiation followed by maintenance chemo. He didn’t want to go into too many details since we didn’t have all the information yet and it’s not relevant until we have that info. But he suspects a low grade glioma and that he will likely need chemo and radiation and we will discuss it more once we have the results.
I remember asking what the prognosis was for a low grade glioma and being wildly offended by his answer. He said it’s hard to predict because everyone’s tumor behaves differently. There is a wide range of survival and a lot of it depends on the molecular markers and how aggressive it is. This tumor isn’t curable but it is treatable. Meaning it always comes back but you can often keep it away for some time. The oncologist could only give us statistics for a population of people not any accurate timeline for Dustin. He explained that patients with the most aggressive tumors have on average 6-18 months. Those with less aggressive tumors have years to decades. But looking at all these patients pooled into one group of people the 5 year survival was still dismal. Like 5% of people are still alive five years after diagnosis which is really fucking bleak.
Despite this bleak outlook, the oncologist was very optimistic and encouraging. Ideally, given that Dustin is young and otherwise healthy he would hopefully have many years left. If all goes well, it is kinda intense at first, but then he can go on living his life as he wants to with brain cancer just being in the background. It’s very possible to live a good life where brain cancer is just a nuisance making you come into clinic for scans every few months.
What the actual fuck? I didn’t understand how anyone could let brain cancer be in the background, a simple nuisance of managing a chronic condition. This fucker will kill Dustin eventually. Yes, everyone dies. But Dustin is 34 years old. How do you live a normal life knowing that your clock is ticking and that you may or may not make it to 40? Dustin had an unknown expiration date that was much closer than most people our age. The future was grim. I kept thinking – had we already surpassed his “best by” or “use by” date? All our plans and dreams were suddenly threatened.
The oncologist was kind, thorough, and optimistic. I was miffed by his optimism and vagueness. However, this cancer is vague which isn’t the oncologists fault. I hate vagueness and uncertainty. I like clearly delineated paths. This path was against the very core of who I am and would likely challenge me every step along the way.
We left the neuro oncologist with the vague plan of discussing Dustin’s invader at tumor board meeting on Friday (July 27th) and in the meantime they would get Dustin on the schedule with a neurosurgeon who specializes in awake brain surgeries. My only request to the neuro oncologist is to pick the best of the best to consult. Someone he’d trust his wife with. Someone who has an interest in gliomas or an interest in Dustin’s case. Not just some robot who gives no fucks. Only the best for Dustin. Someone else can have the second best.
So now we are back to hurry up and wait. Lovely, more torture.
Beside you in time 