One of the things that initially attracted us to each other was our love for music. Not just any music, but Nine Inch Nails. We both had a profound love for industrial synth rock. Loud, weird, electronic rock has so many complex layers that resonates with so many parts of your soul. Some of our favorite musical artists were vulnerable, complex, and flawed humans who felt so real and relatable. They weren’t plastic versions of who were just reflections of what people wanted them to be. Artists like Trent Reznor and David Bowie broke out of the plastic mold of what predefined them. They are not just artistically beautiful, they are personally beautiful souls
Dustin spent seven days in the hospital getting poked and prodded. I spent 7 days in the hospital meticulously monitoring everything. I didn’t want Dustin to be left alone. I didn’t want to miss any assessments by the providers. So I stayed with him, only running home every few days late in the evening to get a quick shower and get back to him.
I told the nurses and techs I’d do my best to anything he needed so they could focus on patients who didn’t have a family member at the bedside. I kept notes of anything they needed to know for their documentation. I know Dustin didn’t want other people doing things he could do himself or have me help with. So I helped him get washed up, I helped him to the bathroom, and we took walks around the unit. If the food from the hospital was gross, I got him food from places near by.
That week was another week of hurry up and wait. Everything felt like the NIN song Everyday is Exactly the Same.
I believe I can see the future
‘Cause I repeat the same routine
I think I used to have a purpose
Then again, that might have been a dreamI think I used to have a voice
Now I never make a sound
I just do what I’ve been told
I really don’t want them to come around, oh noEvery day is exactly the same
Every day is exactly the same
There is no love here and there is no pain
Every day is exactly the sameI can feel their eyes are watching
In case I lose myself again
Sometimes, I think I’m happy here
Sometimes yet, I still pretendI can’t remember how this got started
But I can tell you exactly how it will endEvery day is exactly the same
Every day is exactly the same
There is no love here and there is no pain
Every day is exactly the sameI’m writing on a little piece of paper
I’m hoping someday you might find
Well, I’ll hide it behind something
They won’t look behindI’m still inside here
A little bit comes bleeding through
I wish this could’ve been any other way
But I just don’t know, I don’t know
What else I can doEvery day is exactly the same
Lyrics NIN Everyday is Exactly the Same
Every day is exactly the same
There is no love here and there is no pain
Every day is exactly the same
Every day is exactly the same
Every day is exactly the same
There is no love here and there is no pain
Every day is exactly the same
Everyday in the hospital follows the same basic routine. There are some deviations depending what service you’re on or what you’re in the hospital for. Dustin was on the neurology service and was on the floor – meaning he wasn’t in the ICU. His daily basic routine was vital signs every 4 hours, labs early in the morning, providers begin their assessments as early as 5am, rounding late morning or early afternoon, with sprinkles of tests and procedures whenever they could be fit in the schedule. There is no real rest or respite in the hospital. You’re a slave to the schedule of everyone else.
- 00:00 Vitals
- 04:00 Labs, Vitals, nursing assessment
- 07:00 Nursing shift change and bedside report
- 08:00 Nursing assessment, breakfast
- 09:00 meds
- 10:00-11:00: maybe a bath and maybe changing bed linen
- 12:00 vitals, lunch
- 16:00 vitals, nursing assessment
- 17:00 dinner
- 19:00 nursing shift change and bedside report
- 20:00 nursing assessment
- 21:00 meds
The providers usually come and see the more critical patients first leaving the stable patients for last. It makes it hard to know when they will come around because you don’t know who else they are seeing and how sick everyone else is or where you fall on that list.
That week Dustin was very fatigued. He slept an absurd amount which was very unusual for him. He was also absurdly forgetful. Literally every time he woke up, it was like the romcom with Adam Sandler and Drew Barrymore in 50 First Dates. Where Drew Barrymore’s character has amnesia and forgets everything from the day before. Adam Sandler’s character works every day to win her affections all over again. It was mentally and emotionally exhausting.
Anytime Dustin would fall asleep, he’d sleep for a few hours at a time. He’d wake up remembering he had a seizure but forgot everything else that had happened. He’d look at me and say, “well this is bummer. I really hope I don’t have epilepsy because I’m a rock star and I can’t be having seizures all the time.” He was very focused on the possibility of him having epilepsy because he was in a band called RedLyon and they had some interviews and gigs coming up.
Every time, I’d have to explain to him that it was complicated because it wasn’t just epilepsy. He had a seizure because he had a ginormous mass in his brain that caused his brain. He’d look at me incredulously telling me that I was just being dramatic and didn’t know what I was talking about. I’d tell him about the CT scan and he’d remember he had a CT scan. Which him forgetting all of this would frustrate and exhaust him. So he’d fall back asleep. This was the cycle every few hours for the first several days. Sometimes he’d recall things more quickly. But every few hours, I was the asshole breaking the news to him that he had a giant, unwanted blob in his brain. It was awful to watch him go through this cycle every few hours.
From July 11-13th, there wasn’t a whole lot going on clinically. On the 11th, he had the CT of the brain, then he had a CT angio of the brain, and an electrocardiogram of his heart. We knew the mass was there and likely a tumor of some sort. But we didn’t know were there other masses elsewhere in the body. The 12th, they did a CT scan of the chest, abdomen, pelvis to look for other masses.
I remember telling the team, “Dustin has had a lot of contrast with these scans. I’m a little concerned about his kidney function because he’s really not drinking enough fluids. He’s just taking a sip here or there to take his meds. He’s just sleeping all the time. There is no way he’s drinking enough to flush out the contrast. Do you think he should get some IV fluids so he doesn’t fry his beans?”
His team literally rolled their eyes at me and laughed. “He’s young, he’ll be fine.”
That annoyed me. I moved on to the next question – what were the results of the recent CT scan. Well, there is a weird nodule in his lung. It could be nothing, nodules are not uncommon for folks living in the midwest. But they wanted to schedule him for a biopsy of the nodule since lung cancer can metastasize to the brain. They wanted to know if they were connected. But that would take a few days to get sorted out and scheduled.
I guess I should also note here that Dustin was put on isolation during his admission because he had a cough. So they had run a respiratory panel…he was positive for adenovirus. Yep, he had a cold. Which also could be the cause of some random finding on an otherwise normal CT scan.
What they really wanted to do was an MRI of the brain since the pictures it provides can give a lot more information. Okay, give me the MRI questionnaire and get him scheduled. The MRI turned out to be such a pain in the ass to get because they were not sure if Dustin’s prothetic hearing bones were MRI compatible. MRI scans are super powerful magnets and if his hearing bones were metal and not compatible with MRI machines…they theoretically could become dislodged which would be both dangerous and painful.
I went on a wild goose chase to track down his ENT who had done his surgeries but he was retired and his records were no longer in existence because it had been so long.
Again, more hurry up and wait. Both of us were frustrated because if Dustin was stable enough, he could just go home and we could schedule all this shit as an outpatient. But his team was not very efficient. It was like hearing cats to get shit done.
It was Friday, July 13th, and the team came into round and the nurse followed in behind them with a bag of IV fluids. They kind of stood sheepishly in the corner which was odd. Finally the intern speaks up, “So as you accurately predicted, Dustin needs some IV fluids because he had a significant bump in his creatinine.”
I was pissed and CORRECT. His kidneys took a hit from the contrast and dehydration. It was likely going to be reversible with some fluids but it was totally preventable had they listened to me.
I got a little upset. “I fucking told you so. I work in advanced heart failure and I can smell AKI from a mile away. I’m really trying hard to be kind here and not step over boundaries. But I knew this would happen based on how many contrast studies he had and the fact that he wasn’t drinking anything, so I brought it up as an FYI. I was telling you how to do your job, but you also didn’t and couldn’t know he wasn’t adequately hydrating. I wanted you to be aware. It’s just frustrating that you chose to ignore and dismiss me.”
At this point, Dustin sees that I’m pissed and speaks up. “Wait, DID YOU GUYS FRY MY BEANS? I don’t know what beans are or what they do but I remember my wife telling you this yesterday that I was going to have refried beans.”
The team kind of chuckles and explains AKI = refried beans = rise in the creatinine and BUN = a kidney injury.
Dustin continues, “So I’m going to let you guys in on a little secret. It took me 10 years to figure it out myself. But based on the current situation I find myself in, I don’t think I have 10 years for you to learn the same lesson. My wife is really fucking smart. Annoyingly smart and definitely never wrong. So I’d appreciate it if you’d listen to her and take her seriously. Because sounds like we could have avoided this bean thing had you not been full of yourself and just listened to what she said.”
FUCKING MIC DROP.
I was totally shocked that Dustin was so blunt and that he even remembered the “you’re gonna fry his beans” conversation. But I was also proud of him and totally flattered that he said I was “annoying smart” and “never wrong”. I was on cloud nine. I didn’t know Dustin thought those things about me. Hell, the past two days he had repeatedly told me I had no idea what I was talking about. But it felt great to hear him not only stand up for me but share that he thinks I’m smart.
Weekends in the hospital are largely uneventful as staffing is lower and not a lot happens diagnostically. He slept a lot that weekend and struggled with some nausea and vomiting. But we finally got the approval for the MRI on Saturday, July 14th. Dustin’s bandmates came up to visit which really cheered him up. They also broke the news that they cancelled the interview and shows they had scheduled. Dustin was really upset about that, but it wasn’t his fault he had a giant blob in his brain. Having his friends up really was a boost of joy for him.
That week we had some other visitors from his work colleagues which was super nice. I really appreciated them coming by and visiting. Quinn even brought Dustin a bottle of Coke because that was his primary beverage of choice. I think what was most astonishing is that the President/CEO of the company reached out to me and asked if he could come by for a visit. He did ad he brought his own MRI films to show Dustin. He had a brain tumor and had gamma knife surgery. What a remarkable gesture – it was so kind and vulnerable. You just don’t hear stories about CEOs like that.
The rest of his hospital stay was much of the same. He was stable on his new anticonvulsant, Keppra, and did not have any other noticeable seizures. Just more hurry up and wait.
Dustin had a lumbar puncture on Monday the 16th. Hurry up and wait. He had PET scan on the 17th. Hurry up and wait. The results of lumbar puncture were within normal limits and of no concern. The PET scan was as expected. His brain invader lit up and so did the nodule in his lung. But overall, nothing else was out of the ordinary.
Thankfully, since he was stable on the new seizure medication and the other results weren’t overly unexpected they decided he was safe enough to go home. We were thrilled. However, I was a little miffed because there was no real plan in place. There was absolutely NO instructions on what to do if he had another seizure. There was no follow up appointments scheduled or person I could call if I had questions. I was just told that they CT guided biopsy in IR on Thursday 19th and someone from the hospital would eventually call me to set him up with a follow up appointment. When I asked what I should do if he had another seizure or who I should contact, they just said to not worry about it because he was fine and someone would be calling to set up the rest of the appointments. That is just weird to me, that’s not how I treat my patients. I just don’t release them into the wild with no follow up or contact person.
What I found to be really frustrating about the whole experience was the lack of transparency and communication from his team. I shouldn’t be surprised, communication and clinical efficiency in July is always poorly executed. But I was always kept in the dark and handled like a fragile kitten and when the fragile kitten asked questions they were basically dismissed as stupid or unnecessary concerns.
I recall very vividly, that every day I would ask for what was their list of differential diagnoses and they flat out kept refusing to tell me. To the point where the attending told me, “this isn’t your patient, this isn’t your job, this is your problem to solve. This is the time to be his wife and nothing more.”
I did not take that well. I kind of lost it really. That’s just not the thing to say to anyone. It’s condescending and total bullshit. I said, “I appreciate your perspective and guidance. But that’s a bit ridiculous and trite. You’re telling me you’d just be sitting back with your feet up only being a wife if your husband were in this position? I don’t think so. To me being his wife also means being his advocate and doing anything within my power to help him. Yes I am a nurse practitioner and I’m going to use those skills if it at all benefits him. I can’t turn that part of me off. Someone has to make sure you guys don’t fuck up or pussy foot around. I’m not going to be a submissive person here. This is my husband and I want what is best for him.”
When the attending finally sat down and gave me their differentials, it was weird. She acknowledged that I was indeed right and that she wouldn’t have been just a wife. She also said that she wanted to give me some normalcy for as long as she could before coming in like a wrecking ball and destroying my life. She finally gave me what I had so desperately wanted to know. Most likely was a glioma but CNS lymphoma and tumefactive multiple sclerosis was also on the list. Well fuck, none of those are good options. I thanked her for her honesty and apologized if I was difficult to deal with. I will never forget what she said. “You have no need to apologize. You’ve been kind, professional, and very attentive to all the details. You’ve gone above and beyond to get medical records sent to us faster than we did. You were not only a wife but integral in helping us. None of us would be good as you have been let alone maintain professional integrity if we were in your shoes. Every single one of us would have lost our shit. We all can learn a lesson from you on how someone can be both an extraordinary wife and extraordinary provider at the same time.”
What a roller coaster. Nothing will ever be the same. His week long hospitalization was a lot to unpack. It still is.
Looking back on this week of Dustin’s first hospitalization, I have a lot to be thankful for. Dustin’s employer and colleagues were over the top supportive of him. It gave me a glimpse into Dustin’s work life. I was able to finally meet many of these folks he had spoken about. I think what stood out the most is how much Dustin meant to these people not only as colleagues but as friends. Dustin would always say he kept work and personal life separate but clearly these folks didn’t get the memo and adored him. Knowing he was admired not only as a knowledgeable colleague but as a friend was such an incredible gift to receive. I knew Dustin would always be safe at work because people there genuinely cared about him.
I also had a lot of support from friends and colleagues here locally. I had folks giving me rides when I needed to come home and shower. Bringing by food because I’m terrible about remembering to eat. I had two colleagues who were unhelpful and nosy – they were ultimately really unpleasant throughout my entire journey but they were the exception, not the rule. I had a lot of support from my immediate coworkers which meant the world to me. Some of the attendings I work with offered more than just emotional support. A few opened up a lot of doors for me to get Dustin the quick consults with the best neurosurgery and neuro oncology docs in the city and across the country. One of my attending’s lived a couple blocks away from Northwestern and gave me access to his home so I could get sleep and take a shower without being far from Dustin.
A surprising support came from Dustin’s psychiatrist. I had sent him a text message when Dustin was admitted for his seizure. I knew he had an appointment him and obviously Dustin was going to miss it. The psychiatrist is affiliated with the hospital and he came to visit him literally every day in the hospital and also checked in on me. I was in the process of trying to find a psychiatrist for myself and he said he could take me on as long as we both were okay with that and okay with the fact that he couldn’t offer any couples counseling. Such a blessing for me because I was having a terribly difficult time finding a provider that took my insurance, was accepting new patients, and would call me back.
It was only just the beginning of a really fucked up situation but I had many things to help prop me up to get through it.
Beside you in time 