Graduation & The Blog: 4 Years Later

When I started college four years ago, I was a shell of a person. My surgery had taken place less than a year prior, and I felt it. I really, really felt it. Fifteen minutes of a reading assignment required a nap from brain exhaustion. So did having lunch with friends in the noisy dining hall, a fishbowl of voices coming from every direction. The flashbacks to the awake portion of surgery were overwhelming, and I think that they were one of the hardest parts to push through.

While I found a way to camouflage my needs in the classroom using tan earplugs to muffle the extreme noise sensitivity and audio recording notebooks to help with memory retention, some professors lacked tact in assisting with my accommodations. The awkward instances of direct mention that the class notetaker was for me, while initially bothersome, eventually became a good segway for the ultimately necessary conversation about my health history with new friends.

I wanted people to know about my surgery. They needed to know it in order to understand me – and, to know why I wore ear plugs everywhere. Now, almost five years later, they still need to know, even if I don’t wear the earplugs anymore. The difference between when I started college and now is that back then, I thought my limits were deal breakers or opportunity enders in all the wrong ways. I didn’t think that I could go out with friends, or participate in anything outside of the academic arena because I wouldn’t have the energy or excitement levels to keep up with peers. Now, I realize that my limits are actually opportunities in themselves, and that my activities of daily living and otherwise just take a little bit more thought and extra care and thought than most others. The need to nap isn’t something to be embarrassed about. Oftentimes, people are actually jealous that I’ve arranged a schedule or figured out how to manage a life that fits in time for a nap now and again!

What strikes me the most as the biggest difference between four years ago and now is the ability to imagine a future. I didn’t make plans farther than a few hours in advance during my freshman year. I couldn’t even comprehend the following week. I illogically didn’t think that I would live to see that long. Flashbacks to surgery and fear of recurrence controlled everything I did. Selecting courses for the next semester seemed trivial for the first two years of college because I was that certain of a recurrence. The MRIs, switching seizure medications sophomore year, and figuring out what to do when seizing in class were so confusing and exhausting that planning for a life outside of medical mayhem just didn’t seem possible. Then, something just changed. My brain chilled out, the new meds started working, I seized less, and I hit my life, health, personal, and academic stride. The flashbacks and fear eased, and I was able to be a more typical college student – at least, in ways that made sense to me – and started to look ahead.

Two weeks ago I graduated the healthiest and happiest in my life.

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Image description: A college graduate wearing a maroon cap and gown with two sets of tassels and a medal. Their black shoes and pants are visible underneath and are holding a maroon diploma case while standing in front of a large, gold colored 2017 block letter statue with the number 20 stacked on top of the number 17.

Not only did I graduate, but I did so with a 3.99 GPA from the honors college, and was awarded the most outstanding thesis in my college. I had the opportunity to work in multiple child development labs, and be funded to conduct my own patient population research outside of the university. That research is now being utilized by that community’s lead national organization as well! Next up is my MSW with a health concentration out in Seattle starting in the fall.

I saw my neuro-oncologist here in Arizona yesterday, and she told me the wildest thing: she’s retiring to go and open up a breakfast food truck in rural Arkansas! She said that she has worked every day of her life since she was seventeen, and even though she could certainly work in the field longer (she’s just under sixty), she wants to go and do something more fulfilling in her personal life. This choice was inspired by an epiphany she had after organizing a family reunion out there last summer, and I couldn’t be happier for her. She’s a world-class name in the neuro oncology field, and she’s exchanging her scrub cap in for an apron and skillet. The stress melted right off of her face when she started talking about the truck (The Peck & Egg) named after what her mom used to call sunny side up eggs, for anyone wondering. She also cleared me for annual scans, and gave me names for referrals in Seattle.

When I first started this blog, I did so with the intent of creating something that future brain tumor patients entering college could look to and say, “You know what? This is doable. I can make this work.” in the context of college and chronic illness. I also used it as a way to track and update a large group of people about my health all at once, while simultaneously sharing what I had been up to and learned at conferences. Many students, parents, and fellow patient advocates have reached out to me after finding this blog, some of whom I’ve even had the privilege to meet up with in person.

I don’t know if I will continue this blog going forward, though. I struggle with this decision, as the brain tumor community has so few people and stories available as is. How I feel about this blog right now is similar to how I felt about the video updates I recorded for the first nine months or so after my surgery, eventually setting their access to private. Recording the videos as updates and documentation were what I needed, until they weren’t. Eventually they weren’t what I felt anyone else really needed to see unless it was a contextual teaching moment, in which case I shared direct links to specific videos, some of which I’ve linked within posts on here before.

You don’t grow up and out of a brain tumor, but, you may reach a life stage where this identity can take more of a back seat in your life. I am wondering if I am at that point right now. I do know that I will maintain #BTSM Chats and other related projects. The #BTSM community showed me that our medical experiences have meaning outside of ourselves, and I am continuing to explore what that meaning means for others and myself. These connections run so deep that I am even attending the wedding of one lovely chat participant at the end of July! With that being said, I am also now finally at a point to have multiple other parts of my life that portray meaning outside of this health identity. I’ve spent the past year exploring these parts more than I ever have before, and like I said, I’ve also had the happiest and healthiest year of my life. And that – that is something that can’t be ignored. It means something.

Two Years Later

Two years ago today I had awake brain surgery. All 50 (technically 49) stitches, a brain drain, oxygen tube, multiple arm and toe IVs later, I emerged from the OR. My eyebrows looked great, but the rest of me was definitely not ready for senior photos. I look at the photo below and see power. I see my body’s resilience. Perhaps most importantly, I see me smiling in my sleep and think to myself, “just another day in the life,” because it’s true.

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I’ll spend most of the day wondering how I got here. How I got to a point where professors are surprised that I’m the one who emailed them about brain surgery and epilepsy when I look so “normal.” I originally planned on posting a recap of what I remember from the morning of, during, and night following surgery, but I deleted it. I’m sure that it would have made for a great reading, but it just didn’t feel right. Maybe next year. People have asked why today is so important to me. They can understand how one year later was significant, but are confused as to why I find two years later to be just as meaningful. The answer is simple: Awake brain surgery isn’t just something that you undergo and then forget about. It’s not that you don’t want to, but rather, that you can’t. I take the tranquilizes that are anti-seizure medications 3x a day, and they are a reminder. I am cognizant about the amount of noise I can be around before it completely drains my energy, and they are a reminder. I have to be aware of exits in the room so that I can leave as soon as a migraine is coming on, or if I wish to be elsewhere when a seizure makes its presence known in full force. I have to be on duty at all times.

When my Dad helped move me back into college this year he asked me if I remembered what Dr. B had told him when I was resting in the ICU. I didn’t. He told my Dad that “You just gave her a shot at life.” And here I am. I’m a college student who wakes up every day on my own, goes to class, makes the Dean’s List, makes friends, and dates like any other college student out there. I am normal in many ways thanks to Dr. B.

I had access to one of the world’s most talented neurosurgeons. I didn’t have to “fight” as hard as some might think. I got lucky, and now, I manage my body and brain the best that I can. I occupy a body that could have, would have, should have etc. been many different things than it is today. The combative language that people use when describing chronic illness make it seem like you are either aggressively using all of your energy to stay alive, or that you have given up. I didn’t have energy to expend either way. I woke up every day and took the medication that I was prescribed, and it worked out. I woke up in the middle of the night when the steroids called out to me. I drank the chocolate milk that they commanded me to crave. I went for short walks and held onto my Dad for balance. I watched movies, and I napped in the two months immediately following my brain surgery. I existed for the time being, and that was enough. That was enough to save my body so that I could rebuild my mindset and fully acknowledge a shift in perspective. Now, if I spend too much time thinking about the surgery I’m bound to go insane. How could it be that I’m this functional after all that happened? I have friends who have spent extra time inside hospital walls after trying to answer that very question. But, if I don’t acknowledge the surgery, then I’m selling myself short of my incredibly miraculous history. It’s a fine line to walk.

And just like that, it hits me. Out of nowhere a memory takes over while biking to class. I woke up in the ICU. My throat was dry, and my voice was hoarse. I assume that I had a tube down there at some point in time. I stayed awake in awe for much of my first night in the ICU. I remember a TV being on but me not watching it. The light from the screen helped make the first video that I made, though. And then I’m back. I’ve reached my destination and I know where I am. How I got there is another story. There are moments like that, and when my speech slurs, that I wonder and worry, am I just tired, or is the tumor back? Regardless, here I am. I’ve reached year 2. If I got to do it all over again, I want to say that I wish I wasn’t awake for the surgery. But, I’m not sure if that’s true. Those memories ground me, and I am undecided. Our own experiences are our best teachers, and I’m still learning how to process some of them. I’m headed in for my latest scan this afternoon. It makes sense to double check two years stable by making sure that the tumor (or rather lack thereof!) is still stable, right? This will be two years of an every-four-months scan protocol, and I am hoping to have the scans bumped back to every six months after today. As always, I’ll send the disc out to UCSF for Dr. B’s review.

I recorded videos every day for the first week, then every month, and stopped somewhere around 6 months after surgery. I recently went back to watch them, and didn’t remember taking any videos but the first one. If they’re fascinating to me, they might be to you too. Take a look:

Day 1:

Day 2: 

Craniversary Wrap Up

Today reminded of how much I adore my surgeon. He is such a sweet man. I send him updates for big occasions (ie birthdays, graduation, milestones, etc.) and he always responds within hours. Below is today’s response. Fun fact: he was an all-american high school football player and started for Harvard’s football team before going to medical school.

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I enjoyed a passage from one note in particular today, kindly written by a new friend. It reads: “Every one in a while, you meet someone who’s immense strength is apparent before you even get to know them. You, my dear, are one of those people!”

Year one was full of regrouping and adapting. Maybe I’ll figure out how to write a physics lab report during year two.

One Year Later

One year ago today I gained more in perspective than I lost in grey matter. Today marks one year since I underwent a six-hour craniotomy, during which I was completely coherent and awake for forty-five minutes. It still baffles me that it took longer to fill out college applications than it did to sign my life away in paperwork. Last year September 4th was the first day of my senior year of high school, and I spent it in the ICU instead of going over course syllabi.

My brain tumor was in the left insula, a nub tucked in between the frontal and temporal lobes, which is the speech and language hub for most right-handed people. I was told my ability to speak would be severely compromised after surgery, if I were even able to even talk at all. In the weeks leading up to surgery I secretly practiced writing the alphabet with my left hand in preparation for possible right side paralysis. I was proud of how I lived my life up until that point, and knew that regardless of the outcome of surgery, my ripples had already spread around the world.

I emerged from surgery with phenomenal results. I have no visible side effects other than a scar hidden by my hair, the only remnants of the fifty stables that were once there. Under the surface of my head are four plates and eight screws. Their presence and varying textures on the side of my head serve as a daily reminder that nothing I face in life will be more difficult than that surgery. Although not a week goes by without a seizure or headache, working memory difficulties, and energy challenges, I would not choose to alter my circumstances. These obstacles make me a more comprehensive person. I now take the time to realize and appreciate the capabilities I had prior to my surgery, as well as what I have acquired over the past year since.

Today, I am officially ONE YEAR stable. Brain tumors are the second leading cause of cancer related deaths for those under the age of eighteen, and here I am, still standing and navigating a college campus (NBTS). My next MRI, part of my every four months MRI regimen, takes place in two weeks. Thank you to everyone who has cheered me on with support and encouragement over the past year.

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