What About Bob?

The Waiting Is Unequivocally The Hardest Part

We’re going to play a game with our imaginations today. We’re going to pretend we all know the same person, and that this imaginary person is living out the following story in real time. As the story unfolds, we’re also going to imagine that this pretend friend lives an ordinary life similar to our own, and that it’s all happening in Modern Day America. Are you with me? Okay, off we get:

Once upon a time, 3 weeks and 2 days ago, a man (we’ll call him Bob) experienced a medical emergency. He was having a change in his mental status that resulted in a trip to the Emergency Room. On the way to the emergency room, he began having seizures. Bob had no major medical history before this, just mildly elevated blood pressure and he was almost diabetic. Otherwise, no known health history. This change in behavior and seizures were completely out of the blue, and they scared Bob’s wife and daughters tremendously. The Emergency Room did a CT scan of his brain (a basic imaging scan that generally looks for bleeding when there’s a neurologic emergency). The CT scan was negative for a bleed, indicating this was not a hemorrhagic stroke. Bob continued to have seizures, but the hospital did not have an electroencephalogram (EEG) machine to evaluate him further, nor did they have the neurologic services Bob needed, so he was transferred to another hospital for further workup.

Thankfully, Bob was transferred to a hospital where his wife had worked for almost 2 decades in the Emergency Department and his oldest daughter had worked as a nurse for the first 7 years of her career. He was directly admitted to the Neurology Unit (the exact unit where his daughter worked) for monitoring and further testing. An EEG machine was applied to his head for continuous monitoring of seizure activity, and he was given fluids and medications to stop seizures and treat a potential infection. In the modern medical world, there are algorithms and protocols for neurologic workup, to find and treat the problem that’s causing the change in condition. In this case, the team was looking for the cause of the seizures, and the next likely cause was infection.

The type of infection they were looking for was either meningitis (infection/inflammation of the tissues surrounding the brain and spinal cord) or encephalitis (infection/inflammation of the brain itself). They start the treatment for this right away (even without an official diagnosis) because time is of the essence. They usually give anti-seizure medicine, antibiotics, antivirals, and IV fluids.

Weekend Warrior

To determine the cause of the seizures, two important tests were needed: a lumbar puncture (also known as a spinal tap) and an MRI (a more detailed brain scan that gives information about tissue damage from problems like strokes — another possible diagnosis). The problem was, it was Saturday, and Bob wasn’t able to get either of those tests done the first day.

Then came Sunday, when Bob started waking up more and piecing together the events from the last two days. He was very forgetful and was mixing up words frequently. He was also calm, pleasant, and able to cooperate with the healthcare team so he could get moving and out of bed. He was seen by doctors, nurses, and other healthcare workers who made sure his vitals were stable, his condition was improving, and that he was closely monitored for any changes or signs of new or worsening problems. He was as safe as he could be, given the circumstances.

Fortunately, Bob was cared for by a brave neurologist who agreed to perform the lumbar puncture (LP) in his room on a SUNDAY instead of waiting till Monday when the other departments reopened (further delaying his diagnosis). A lumbar puncture is nothing to sneeze at — a neurologist positions your body just so (to make space between the vertebrae of your spine), then sanitizes your skin, injects numbing medicine under the skin with a needle, then inserts a much larger needle into the space between your spine bones, and drains a copious amount of spinal fluid to send for testing. This is a routine test for meningitis/encephalitis. There are risks when it goes right, and if it goes wrong. If the patient moves, flinches, the doctor sniffs, the needle could move and damage the spinal cord or surrounding tissue. Or after the procedure, the puncture hole might not close right away, causing spinal fluid to leak and result in a very severe headache and the need for another procedure to stop the leak. The insertion site could get infected. Or, everything can go perfectly right, with no signs of complication or infection.

Then, you wait to find out the results of the test.

See, here’s the thing about Modern American Healthcare — not a lot happens on weekends (at least, not from the patient’s perspective). But on this particular Sunday, Bob got his LP and he had his MRI. Things were looking up. With how quickly his condition was turning around, it seemed like the medicines were working. Maybe it was an infection, and the antibiotics or antivirals were taking effect quicker than usual (but they wouldn’t know until the LP results returned). Bob’s family visited and they were pleased to see him more talkative and making sense, and they breathed a sigh of relief that things were looking good.

That was until the MRI results came back. On a Sunday evening. Bob’s wife (a nurse) was able to read the MRI report before a doctor came to explain them. She showed them to Bob’s daughter (also a nurse) and they froze in disbelief.

While they were distracted thinking that an infection was being treated and improving, they hadn’t considered there could be worse lingering inside his brain. The impression of the MRI (the MRI is a noisy 45-minute test, then the pictures get sent to a radiologist who reviews and writes a report), written by a radiologist (a doctor specializing in reading radiology imaging) indicated there was a mass. There were specific worrisome words in the impression like “glioma” and “infiltrating” and “mass effect” and “uncal herniation”… all in one sentence… ripped Bob’s family’s hearts from their chests.

It was out of nowhere.

And that was when the REAL WAITING began.

Bob and his family had to wait for doctors to say those words out loud, but they never did. A different neurologist saw them the next day (Monday). He showed Bob and his family the images from the MRI (the pictures), but didn’t describe them in detail, nor did he describe the report from the radiologist to them. He didn’t use the words that were given to him by the radiologist. He was vague and spoke in generalities.

Between that Sunday (3 weeks ago today) and now, Bob has been seen by healthcare workers who specialize in neurologic conditions, infectious disease, and neurologic surgery. He’s been cared for by doctors, nurses, physical therapists, medical assistants, mobility aides, dietary teammates, and so on. He’s had conversations with care managers, charge nurses, stroke coordinators, and physicians assistants. He’s seen everyone there is to see.

He has experienced delay after delay.

Bob needed a biopsy (cells/tissue gets removed from the body, then sent to a lab find out what they’re made of). And it had to be done by a neurosurgeon (a brain surgeon).

After many delays, Bob finally had a biopsy of the mass in his brain (on a Friday, 2 weeks after the journey began). To biopsy a brain mass, a neurosurgeon cuts open the scalp, drills into the skull, inserts a needle into the brain, and aspirates (removes) enough cells to get an accurate result. Then they close the hole, staple the skin, and send the patient to be monitored in the intensive care unit. Bob’s neurosurgeon said he would go home the next day (a Saturday). He was kept in the hospital till the following Monday (a 4-day hospital stay for a “routine” procedure) — again, two weeks into this journey.

Again, Healthcare function seems to cease on the weekend.

He was also told he’d get the biopsy results by the end of the week.

The end of the week was 2 days ago.

Bob’s wife called on Thursday — no callback.

She called again on Friday — office was closed.

Then came Saturday, and there went Sunday.

And Bob is still waiting.

3 weeks and 2 days — from the start of this adventure till now.

3 weeks to the day of knowing there’s a mass in your brain, but you don’t know what it’s made of, what’s to be done with it, what problems it might cause, for how long…

How many days is too many to wait to know what the fuck is in your brain in modern day America?

I’d say this is too many. This is too much waiting.

I mean, really, what about Bob?

Ending On A Hopeful Note

Well, I’ll tell you, Bob’s busy playing guitar, watering his garden, walking his dog, and spending time with his wife and family. He’s patiently waiting while everyone else holds their breath. He’s keeping his cool, better than he ever has in his life. He’s savoring every strum, every bite, every breath. He’s learning that it’s all precious, none of it’s promised, and even the promises of excellent care providers fall through.

Husband of a nurse, father of a nurse. And he’s not the exception, he’s the rule.

So, while we anticipate the upcoming work week — let’s use this breath to send the Bobs of the world some positive thoughts, prayers, good wishes, healing energy, whatever your beliefs tell you might work.

And then let’s hug our families, our friends, our colleagues, our strangers. And give thanks for this breath, while hoping for the next.

Take good care.

Love,

Jessie

PS: Here’s Tom Petty saying it better than I ever could: