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READ MOREPublished on June 21, 2024 in Share Your Story
Guest Author: Michael P. in Iowa
It started rather small, as I suppose these things often do. One day last year as I was leaving work and walking to my car, I heard a rhythmic sound that I couldn’t identify. I tried to figure out what direction it was coming from (was it some kind of construction equipment or was a nearby factory going crazy?) but it was elusive – everywhere and nowhere all at once. I’m a little slow on the uptake, so it took a little bit before I realized the sound was coming from inside the house.
Or, in this case, the head.
Of course, I immediately assumed the worst and came to the conclusion that my blood pressure medication had become ineffective and this was a symptom of cardiovascular stuff. After all, I had been going through a string of stressful days at the office. And then, true to form, I employed my usual unjustifiable strategy of “let’s ignore the problem and it will probably go away”. It works for car troubles (no it doesn’t) so it must work for my health too (no it didn’t).
Well, spoiler alert, it didn’t go away. It kept happening. THROB. THROB. THROB. I kept ignoring it, hoping it would just go away. Again, it didn’t. It got worse.
The throbbing graduated to headaches and the headaches soon started working toward an advanced degree. Eventually, it became the worst pain I had ever experienced. It sent me home early from work a few times, it made me no fun at social events and at least one party I can remember. Ibuprofen and other over-the-counter pain relievers helped a little, but when a headache would set in, which was happening more and more frequently, it was excruciating, and I was completely at its mercy. There was no real trigger I could identify. The headaches just… happened… and whatever shape I thought my day was going to have was now going to be completely different.
The headaches had gone on for months, and by this point, it was close to the end of the year, which is when my annual check-up happened. I brought up the throbbing and the headaches to my doctor and shared my concern that it was heart-related. He disagreed and said it probably had to do with my caffeine intake and to cut down on Diet Coke.
Up until that doctor’s appointment, I had avoided the word “migraine” because I had always thought that migraine=a strong headache and I had been, shamefully, a bit judgemental of those who used what I assumed was, essentially, discomfort to cancel plans, get out of work, etc. Previous me was very much in the “Suck it up, cupcake” camp. In hindsight, how wrong I was. How unfair and terrible. I knew that what I was going through was more than just strong headaches. It was something else entirely and even though I wanted to be in control, I was very much not. I wanted a name for it, so I asked my doctor, “Are these migraines?” Yep, of course, they were, but not to worry because he was prescribing me a medication that I could take when in the throes of one to stop it in its tracks. I had a get-out-of-jail-free card!
Which never really worked. It took the edge off, sort of, but it was not a solution. And then other symptoms started showing up. After a migraine would pop off, I would get weird visual effects like auras and zig-zag lines crossing my field of vision. One day, I was talking with Emily, who was sitting on the couch, and I knew that behind her head was a pillow with an embroidered holiday message. I could see the pillow but my brain wouldn’t let me see its letters. Not like there was a dark blob over the letters, but like my brain was photoshopping them out, a select->delete job that I didn’t ask for. The migraines also began to bring about tingly hands and fingers and what I called “clompy legs” – sometimes, while awash in migraine, my legs would get extra heavy and it would feel like I was STOMP, STOMP, STOMPING around.
But time passed, the holidays came and went, and I mostly made it through ok. And then, one day in late January, I fell.
I was at work, having one of the worst migraines yet, but determined to push through because I had a hefty to-do list that day. All the associated symptoms were present: visual artifacts, tingles, clompy legs – you name it. But I was determined to soldier on. I was between meetings and on my way to the bathroom when my legs stopped working. I dropped to all fours, scuffing my knees pretty badly through my khakis. I was close to a few chairs we use as a small waiting area, but I couldn’t make my legs work to get there. So I pulled myself along with my hands, like Lieutenant Dan in Forrest Gump when he’s out of his wheelchair. A coworker who had seen my fall offered to help, but fear, shame, and pride made me make her move along. I was rude. I was not at my best.
Some part of me was still convinced this was all cardio related so I extrapolated and decided I’d had a stroke. When my motor functions returned after 5 minutes or so I returned to my desk, skipped my meeting, and googled stroke symptoms for an hour. Other than loss of motor function, I didn’t have any.
A rational person would have called 911 and gone straight to the emergency room. But I wasn’t thinking straight and, besides, “let’s ignore the problem and it will probably go away”. When I got home that night and told Emily what had happened, she was worried and not a little bit upset with me that I hadn’t called an ambulance or told her about it at all until well after the fact. I was scared, I am stubborn, and I still wanted to avoid the issue. But on her insistence, I set up a doctor’s appointment ASAP.
I arrived at the appointment with a lot of trepidation and feeling a little defensive. After all, when I first brought the migraines to my doctor’s attention his guess was that they were related to my Diet Coke habit. But since then, they’d gotten so much worse and so much more complicated. I came to the appointment with all the headache data I’d been accumulating (there’s an app for that!): dates, times, duration, associated symptoms, etc. I was worried that the doc would be dismissive and I was prepared to assert myself.
Which ended up not being necessary. You never want your doctor to look worried, but after I laid out for him how the last few months for me, including the fall, things in that exam room got really serious really quickly. The doctor changed my migraine prescription from a medication I’d take after the fact to one I would take every day to prevent them from starting in the first place. He also shared his concern that something larger was the ultimate source of the migraines, so he ordered an MRI so we could get a look inside my head.
It was two weeks before I could get in to do the MRI, two weeks filled with worst-case scenario daydreams and self-pep talks about how everything was going to be ok because, after all, heyyyy…. it’s me.
The afternoon of my MRI, I changed out of my clothes and climbed into the machine. The tech explained to me that it should be quick and easy, no more than twenty minutes, and not to worry as my doctor didn’t order any “contrast”, injectable liquid that makes the scan come through more clearly. He asked what kind of music I wanted to listen to. I told him I didn’t care, and so for my first MRI, I listened exclusively to the Taylor Swift channel on Pandora.
Four songs went by, then five, six, seven. I was doing the math in my head trying to guess how close I was to the end of the twenty minutes I’d been promised, when the tech pulled me out. He apologized, said I would need the contrast injection after all, and that they were going to run me through again.
Uh oh. That didn’t sound good.
Back in for more Taylor and a cavalcade of some seriously dark and scary thoughts. Why did I need to go again? What had they found? Was it serious? What if they found something so bad that I’ll be rushed from here into emergency surgery? What if that surgery doesn’t go well? What if this morning was the last time I got to see my wife and son? What if I die?
There were no answers at the MRI office, at least not for patients, so eventually, my time ended, and my thoughts and I headed home to present a brave face and, later, for some fitful sleep.
The next day, at 8:30 or so, I saw the notification come through from my patient portal that the MRI results were in. Now, my doctor is usually pretty good about adding his comments to any test results that come through (“You’ll see your cholesterol numbers are this, so going forward we need to change your diet to include more….” or “The numbers in such and such category are outside the typical range, but not to worry because…”) But today? Radio silence. I read the findings attached to the MRI, which was full of scary words like “lesion”, “subependymoma”, and “neurocytoma”.
Bringing my vast medical experience to bear (Google), I was pretty sure I had a brain tumor, but couldn’t be sure if it was benign or malignant. The more I googled, the more convinced I was that this was the BIG BAD. I now know why they caution against WebMD rabbit holes, but I was deep down in one and not doing so well. I was freaking all the way out. 9:00 came and went. So did 9:30, 10, 11, and lunchtime. I was working from home that day, so Emily was there to keep me (sort of) grounded but, with apologies to my employer, I can’t say I was really focused on work that morning. I made it through lunch and finally sent a message to my doctor which basically said, “Saw the results. Really freaking the fuck out (actual quote) and I need you to call me.”
To his credit, he called me almost immediately upon clicking send. Less to his credit, the first words out of his mouth were “Hi Mike, is Emily home with you today?”
Whaaaaaaaaaaaat???????? Not exactly how I wanted to start that call.
I went downstairs, grabbed my wife, and returned to my office to face the music. The doctor explained that the MRI had found a “mass” and that it was located inside my brain’s right ventricle, which was cutting off the proper flow of my cerebrospinal fluid. This was causing that ventricle to grow much larger than it should, and the combination of the two – the mass and the enlarged ventricle – was putting pressure on my brain and very likely causing the symptoms I was experiencing, the headaches, the tingling, the loss of motor control, etc. If left untreated all of those would only grow worse and more frequent and could eventually include confusion and other realities I’d rather not face.
At first, the doctor only referred to it as “a mass”, and I was getting annoyed. I have had no experience with anything like this, so I needed to nail him down – was the “mass” a tumor? And if so, was it cancer? He clarified that, yes, I did have a brain tumor, but based on the shape, texture, and likely slow growth, it was almost certainly not malignant. His direct quote was “this will not be the thing that ends you”.
This was, obviously, a huge relief and a big weight off our shoulders. Or at least one set of weights. We were pretty sure we found out what had been going on, we were also pretty sure it wasn’t going to kill me, so it was time to talk about next steps and logistics.
The doc advised that the end of this road was very likely brain surgery, but he wanted me to talk to some neurosurgeons to confirm. In my metro area, there are two hospital networks with neurosurgery departments, but my doctor had a higher opinion of the department at the University of Iowa hospital, which is almost two hours away. I was shell shocked, trusting in the advice of someone smarter and more experienced than me, and going with the flow, so I quickly agreed to the referral. I’m so glad I did.
U of I, it turns out, is a world-class organization. They are incredibly knowledgeable, professional, and patient-focused. From the moment I walked into my first consultation appointment, I felt extremely well cared for.
Anyway, we met with a neurosurgeon who reviewed my MRI and was told the story of me and my health issues over the last year. I’m sure he asked a lot of questions, none of which I can remember, and at the end of the appointment, he told us that he’d be recommending surgery to remove the tumor from my brain. Tumors of my type aren’t the most common, but surgery is usually successful with low rates of relapse or regrowth. We penciled in late April or early May as the date for the surgery and got in the car for the two-hour drive home.
My thoughts were in overdrive and probably went something like: “OMG. OMG. OMG. I’mGoingToHaveBrainSurgery” on repeat.
It’s hard to reassure people that you are confident, composed, and going to be 100% fine when you’re not at all sure of any of those things, but that’s exactly what I tried to do on the ride home. Emily drove and I checked in with parents, siblings, and in-laws as I called to fill them in on what the neurosurgeons said and what the plan was.
Two big tasks were now in front of me: letting extended family and friends know what was going on and working with HR to coordinate what I was becoming more and more certain would be a leave of absence from work.
After the “it’s a tumor” phone call with my doctor, I had, naturally, told my parents, my sister, and my in-laws what was going on, but I didn’t want to tell anyone else until we had a plan in place to deal with it. But now it was time to tell my aunts, my dear cousins, and my close friends.
Turns out these conversations, while important, were really hard on me. I was unprepared for how world-shaking it would be to tell people I truly love that I had a brain tumor, the level to which it had been affecting me and that I needed brain surgery. At first, I thought I was just calling to share my news, but it became clear fairly quickly that I was dropping an emotional bomb and that I had to help them grieve a little bit and (on some level) provide reassurance and empathy. It was necessary. It was the right thing to do. It was exhausting.
Luckily I didn’t have to drop an emotional bomb on my then-9 year old son. We made the decision early on, right after the MRI was scheduled, to bring him into the loop and share as much information as a 9-year-old a) should have and b) would be able to process. So he knew that dad was having a bunch of headaches and headache-related symptoms, that I was getting an MRI so the doctors could see inside me, and then later that I had a tumor that needed to be dealt with.
He was scared, how could he not be, but doing it this way stretched out the time to process all of it, gave him the chance to have conversations with us whenever he felt the need, and allowed him to feel the things he needed to feel rather than getting all the info and the BIG FEELS all at once. That’s what I hope happened anyway. I guess when he’s an adult his therapist will ultimately be the judge.
Talking about it at dinner one night, we decided that my tumor was not a hitchhiker; hitchhikers ask permission to ride along. Mine was a stowaway, hiding from the authorities in hopes of a free ride.
We eventually picked a date for the surgery, May 11, and my part-time job became learning how to navigate the medical leave process at my full-time job. It was bureaucratic, it was red-tape-y, it was not user friendly. I ended up requesting and being approved for six weeks of leave. I had no idea whether that would at all line up with the recovery time my body needed or the amount of sick days I had saved up.
In general, I’m sort of a hope-for-the-best-but-plan-for-the-worst kind of guy, so I was happy that Emily and I had our wills and living wills put together a couple of years ago. One less thing to worry about. Higher on my mind was making sure Emily had my login info to the various accounts, web portals, devices, and computers that one uses to conduct their affairs. I also worked very hard to make sure I left no loose threads at work and everyone, internal and external, knew who to contact in my absence. Matthew’s grandparents had graciously agreed to come stay with him while I was in the hospital (Emily would be staying at a nearby hotel) and our friends were on Ready Standby to offer any assistance they could.
As we got closer to the surgery date, my symptoms increased. One afternoon after work, in the midst of a migraine I joined Emily and Matthew at a 4th grade orchestra concert. My legs didn’t really want to work, but this time I had Emily to lean on as we made our way through the parking lot of the venue. We sent Matthew on ahead to meet his group and I sat in the lobby until my faculties returned to me. I was also getting confused. The night before we left for the surgery, we were out to dinner with the in-laws, and I had a blazing migraine going on. At one point, I expressed frustration that it was taking so long for the waiter to take our order. Emily looked at me like I was crazy and told me that he’d come five minutes ago. I asked if I had ordered. She said yes and told me what I had chosen. Indeed, it was something from the menu that I was able to recall having my eye on.
We drove down to Iowa City the day before the surgery for a final appointment with the neurosurgeons and another MRI. Everything was set for the next day, and I didn’t have to be at the hospital too early. We went out for a nice dinner downtown, which I don’t really remember that well, and headed back to the hotel to rest up. I had some pre-surgery homework to do, mostly showering that night and the next morning with their special soap, and all I could think about was whether everyone was going to be ok without me for a few days (personal) or a few weeks (professional). Best case.
All in all, logistically I was ready. Emotionally, I was anxious and afraid. But, how could it be otherwise?
The next day we drove over to the hospital in the late morning and began what felt like an interminable process of meetings and conversations with various medical professionals to get me physically and legally ready to have my head cut open. They told me how the surgery would work (peel back skin, drill hole in the head, pick out tiny pieces of the tumor until done, reassemble). They also advised me that, at discharge time, they would be the ultimate decider of where I got discharged to. We all had every reason to believe it would be my home, but it could be an assisted living facility or another hospital. Not my call.
That was the first of two “oh shit” moments of the day.
The next came when they were wheeling me to the operating room after Emily and I said, “I love you” and “See you soon.” I was required to lay on the gurney which made its way to what looked like every classic operating room set you’ve seen in any medical drama on CBS. Lots of bright lights, lots of computers and tubes, lots of beeping and booping. In that moment it all became very real and very scary. I thought, “This is happening. It’s real. And there’s no way at all to back out of it.” Even if I claimed illness in an attempt to escape, I was in a hospital. Where could I go?
Thankfully, the nurses and doctors were chatty and pleasant, and the anesthesia soon came, and before I knew it, the lights went out, and I didn’t know anything at all.
Special shoutout, recognition, validation, and MVP award here to Emily who spent the next five hours in the neurosurgery family’s waiting room with nothing but my name and a status bar on a monitor to let her know what was going on with me or where the doctors were in the procedure. When I was inside the tube for that original MRI, I remember the dark night of the soul I went through and all the scary questions I asked myself. I wouldn’t be surprised if she went through something similar, except instead of the 40 minutes of vortex I swam through, she swam for FIVE HOURS.
I woke up in a recovery ward, feeling drugged, dry-mouthed, and with the worst sore throat of my life. I knew I was going to be intubated for the surgery, and even though I was technically awake when it went in, the anesthesia kept me from remembering it. But now that the tube was out and the drugs were wearing off. I was given ice chips, and the best-tasting saltines of my life, and my nuclear sore throat started to feel better. After a while, I was taken to my room in the neurosurgery ward. Home for the next few days.
I was still kind of out of it, but I knew I needed to eat. I remember asking for and receiving a peanut butter sandwich and an apple juice, but both arrived hot for some reason, and it was all I could do to get them down. Eventually, lying in my room and drifting in and out of consciousness, I realized that I wasn’t alone. Emily was there, sitting next to me in my room’s recliner. I wish my first words to her were filled with love, gratitude, and romance but I’m pretty sure they were just, “Hey. When did you get here?”
Emily had been busy while I was under, sending innumerable updates to family and friends. After we caught up, we called home to talk to Matthew. He was relieved to hear my voice and told me that, at recess, he was thinking about me and wondering how I was doing and “had some emotions”. I guess he sat down and started crying, and one of his classmates, an otherwise wild, rough and tumble 9-year-old, came over to comfort him. I later reached out to that boy’s mom to express my gratitude that her son had taken care of mine in such a fraught moment.
The surgery had taken about five hours and, we’d find out later, was very successful. A middle-of-the-night post-surgery MRI would show that the surgical team had removed everything they wanted to remove. This time, I specifically requested Taylor Swift for my in-the-tube entertainment. Hey, it’s tradition.
Now my job was to recover and, I would learn, I was in excellent hands to get that started. I really can’t overstate how well cared for I was at the U of I hospital. I had two primary nurses during my stay and both were knowledgeable, charismatic, comforting, and empathetic. As I began to get up out of bed and take walks with Emily around the floor, it was becoming clear that I was recovering very well. I was still on some pretty heavy medication, so headaches wouldn’t be a problem, but the surgery had not affected my mobility, speech, hearing, sight, or cognition. The same can’t be said for others on my floor. I began to understand that my surgery outcome was much better than it could have been. I was luckier than many, or luckier than most.
I was doing so well that the neurosurgeons were willing to discharge me on Saturday, after only two days in the hospital. I was glad that they felt so positive, but two days felt too rushed for me, so I asked to stay an extra day for additional rest.
I went home on Sunday, riding shotgun as Emily drove what I was sure was 125mph down the highway. The speedometer disagreed, telling me that we were only doing a leisurely 70. I was in slow-motion mode, and I would be for the next couple of weeks.
Once again, I spent the ride home from Iowa City checking in with parents, siblings, in-laws, and (this time) friends to let them know that I was ok and that everything looked really good. I was rocking a truly gnarly line of stitches that extended from the top of my forehead down to my right temple. I had bought a pack of little caps that I was wearing to shield others from my hideousness, but I wondered how long the stitches would be in and what I would look like when they came out.
It was wonderful to come home, to reunite with Matthew, talk to my in-laws, and let everyone see that I was ok. We’d bought a new recliner for the family room just before the surgery, and for the next few weeks, my job would be to sit there, read, and watch TV. Other than the massive head wound and the cocktail of post-surgery medications I had to take throughout the day, it was heaven.
The in-laws left after a few days, back to their real life, and my mom and stepfather came to town. It was good to see them and I know they were glad to be there with all of us, but eventually they too went home. With no more guests or caretakers at our house, it was back to (sort of) normal life for us. Friends from all different corners of our lives had really gone above and beyond with generous donations of DoorDash, UberEats, and GrubHub gift cards, delicious food delivered directly to our door, and other means of support. It was a glorious time of unlimited takeout, grocery deliveries, and tasty snacks.
As I recovered, I read a few books, I rewatched Band of Brothers, and I napped. A lot. I tried to be a little more active each day and it wasn’t too long before I was able to take the dog on walks. One day, after practicing a bit in the neighborhood first, I drove myself to see a movie. I mowed the grass. I did some light fix-it stuff around the house. But, surprising myself, I was starting to become restless with too much free time and limited responsibilities.
Still, as time went on, I was feeling better and better with only two lingering side effects, one worse than the other. First, I was a numbskull. Literally. The first week or so after returning home, the whole top of my head was numb. Couldn’t feel anything. As time went on, the patch shrunk, eventually to a pool ball’s diameter on the top right side. Looking at the post-surgery MRI images, you can quite clearly see where they went in through my skull, so perhaps this was to be expected, but it was new to me.
More concerning was the persistent tinnitus that I first noticed a day or two after the surgery. It was not really loud and not high-pitched; it was more of a somewhat quiet hiss or hum. When there was a lot of white or environmental noise, it would recede into the background, but the moment I noticed it again, it was front and center once more.
Just before Memorial Day, I had an appointment with my primary care doctor and had my stitches removed. He also agreed that, since the surgery went so well, there was no need to be on my migraine medication anymore. I told him that the sooner I could be off the better, as my least favorite side effect of that medication was the general dopey feeling it often left me with. You can’t go cold turkey, so we decided on a phase-out plan to get me off completely.
I also asked about my side effects. The doctor said, “Mike, even though the surgery went about as well as we could have hoped, your brain has still been through a traumatic experience. It’s going to take time for it to put itself back together. The numbness will almost certainly go away, but the tinnitus may or may not. And even though you’ll be off the migraine meds, a general dopey feeling may resurface from time to time. These are normal symptoms of a brain healing itself. Let’s revisit all of these in six or nine months.”
In the end, that appointment felt very positive. The regular doc was happy with the surgery and my progress, stitches out, plan to get off the meds, and reassurances that what I was feeling as I healed was normal. We left town for Memorial Day feeling thankful for my progress and hopeful for the future.
When we were planning for the surgery and my medical leave, the doctor told me to count on six weeks of recovery time. I was able to scrape up enough time off to cover that, so six weeks is what we set my leave at. In doing so, I figured my time off balances would be down to zero by the end of my leave, so we reluctantly put our summer vacation plans away. There just wouldn’t be a way to make it possible. Which was a real shame, because this was the year we were going to take advantage of the 4th grade free National Parks Pass and do a tour of the national parks in Colorado, Utah, Montana, and Wyoming.
But, as it became clear that I was recovering much faster and better than we’d expected (and especially because I was getting antsy), I decided to go back to work early. I cleared it with my various doctors and after only two weeks of recovery, did a soft return to work. I worked part-time and didn’t announce my presence to anyone other than my coworkers to allow me to ease back in and whittle down the mountain of emails and voicemails that had come through in my absence. Doing it this way gave me back about 3 weeks of time off that we could use to make a pared-down version of our great national parks road trip happen.
That trip was absolutely wonderful, and I relished the opportunity to be healthy, healing, and stowaway-free. Our time together on the road was something of a celebration of togetherness and that we had weathered the storm.
I’ve been off my various medications for some time now, and there have been no recurrences of the migraines or the other symptoms I had experienced. Everything feels blissfully normal. There is a small chance that the tumor could regrow at some point in the future, but apparently, tumors of this type are not aggressive. So, with proper monitoring, we will be able to catch it early enough to greatly reduce the risk. My last MRI in July (more t.swift) was perfect. While I will still have to have MRIs done every so often as I make my way down the years, the interval between them can grow longer and longer.
My numb patch is almost entirely gone. Some dopeyness remains, most often seen in trouble finding words or choosing the wrong word when I’m really spouting off at work. But that’s improving week by week, I think. The tinnitus is still here and I’m beginning to suspect that it may be with me forever. But if that’s the price I have to pay to not have a brain tumor anymore, I will pay up and not think twice.
I could not have gotten through this without Emily, who came to every doctor’s appointment with me, often taking notes, and was by my side while I was in the hospital. If you ever have a life-altering situation that feels too big to manage on your own, I hope you find yourself an Emily.
I also felt Matthew’s love throughout. I found that oftentimes when I was explaining a situation to him and providing reassurance, I was also putting it into context for myself and practicing self-soothing. Parents and in-laws offered love and support (both emotional and logistical). Our friends showed up in a big way, making sure we were taken care of in whatever ways they could as well as making sure we felt seen, loved, and supported. The U of I staff I’ve already mentioned, but it bears repeating: they’re the best. Top-notch, world-class. I still get a little choked up remembering how scared I was and how well they took care of me. And, finally, in the early days, when it was a big, bad, scary situation that was all-consuming and totally terrifying, I reached out to an old Baltimore friend who I remembered had personal experience with something similar. In the interest of anonymity, I won’t directly name her here, but if she’s reading she knows who she is. This friend listened, reassured, put things into perspective, and made herself available to my questions, anxieties, and hopefully well-hidden freakouts. She checked in on me throughout and made me feel less alone. I owe her a lot.
I don’t know what the future holds. I could be totally fine, the tumor could come back, or some other terrible thing that’s on no one’s radar could rear its ugly head. But I seem to have made it through this one, and that’s not nothing. Sometimes it hits me out of the blue: I had a brain tumor. And brain surgery. And I’m fine. When I remember what I went through and when I come to that same final statement it always amazes me.
TAGGED WITH: brain tumor
Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.