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.

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Well that was awkward

The office called to reschedule the appointment for April 28th instead of the 29th, so I didn’t have to go to the doctor on my birthday after all!

Dr. Z was surprised to hear about the intensity to which some of my symptoms had effected. But, now that I’m pretty much back to my baseline cognitive state and energy level, we were able to reflect. We decided that I would call her the next time I have a seizure and that then I will very likely add another 100mg of Zonegran. I have the script ready to fill, it’s just a matter of if I want to and feel ready to do it. I’ll be busy volunteering at a children’s hospital this entire summer, and I don’t want to be all fogged up again. So, then we circle back to the ‘Are you putting your health or life first?’ debate, the ‘How is your quality of life, and how do you define quality of life?’ question. Those are conversations to have in person, not via a blog post.

I’ve actually had a seizure since I saw Dr. Z the week before last, but I know that it was directly caused by the lack of sleep and stress that came along with final exam week. Because the seizure was not triggered by an unknown cause, I didn’t call Dr. Z. I will call her and add more Zonegran when I feel like a seizure really goes out of control, or that they are truly unmanageable and increasing. The Klonopin wafers knock the seizures out within minutes, and it has been 3 weeks since my last seizure, and I’m feeling pretty content, which is nice. Part of being an empowered patient is taking responsibility for life circumstances and life events that are both within and out of my control. I could have chose to go to bed earlier when I was studying, I suppose that I could have petitioned to take my exam later in the day instead of in the early morning, etc.

I remain a huge fan of Dr. Z. She listens intently, and you can see the gears churning in her head as she cross-referencing her neurological knowledge with her personal, familial history of epilepsy prior to answering questions. I had a question that she wasn’t sure of the answer to, so she checked with a colleague and called me back with an answer within two hours of the appointment. There’s a second doctor, Dr. D, who has come in for a few minutes at the end of my two appointments with Dr. Z just to basically summarize and verify everything that I talked about with Dr. Z. Dr. D is so incredibly socially awkward. The interactions are almost painful to have. I’m not sure if he has some sort of social impairment, but his [perceived] level of uncomfortableness and social anxiety when speaking with patients is something that I truly believe is holding him back from connecting with and building relationships with his patients. I’m cringing now even just thinking back on the two interactions now. I might write another blog post about my thoughts on doctors and social skills/interactions more at length at a later point in time. Medical knowledge matters, but so do social skills and knowing how to navigate social spheres, even patient and waiting rooms.

Let’s Try Again

After nearly two years of living in Arizona, it was finally time to establish a local neurologist. My parents are moving to the Southwest and out of Michigan, therefore I won’t be able to see my incredible neurologist in Michigan any longer. Dr. Z is a neuro oncologist from the Barrow Neurological Institute out here, and I am very pleased with her after this morning’s appointment. If this were Yelp, I would rate her a “10/10 would recommend.”

Naturally, I did some research on her ahead of time. A few papers and research studies popped up per usual. What surprised me was that her social media accounts came up, too. All of the sudden I found myself looking at her tweets and Instagram posts about the marathons she has ran (woah!). At first, I thought it was strange and almost felt uncomfortable. But then I realized that I liked knowing this information about her. Knowing that Dr. Z has hobbies and a “real life” outside of her practice was comforting, and reminded me that doctors are people too. While it might be weird for her to know that I know all of this outside information about her, it makes me feel like I know her a little bit better other than just my doctor with a name tag. It also probably makes me a little bit creepy, though. Oops. No shame.

I felt more nervous for this appointment than going on a first date. In most previous first appointments that I’ve had over the years I have to reexplain my entire medical history starting from the beginning. Dr. Z had already read my case file though and knew my story for the most part, which was a nice surprise. She was affirming and honest throughout the appointment, while also hopeful and kind. Dr. Z also has a family connection to epilepsy because both her sister and mother have epilepsy. In my mind, this makes her work all the more meaningful because she brings an extra sense of empathy to the table that truly understands the toll that these medications and this condition can have on a person and family.

While I only had 4 seizures over a four month timespan during my first semester this year, it has not even been three semesters since, and I have had 7 seizures. WIth that being said, we decided to change my medications and see if we can cut that number down. The new plan after today’s appointment and within two weeks with stabilized medication adjustments is: Morning – 200mg Vimpat, Afternoon – 200mg Vimpat, Evening – 100mg Vimpat with 200mg Zonegran, and Breakthrough –  .5 to 1mg of Klonopin wafer. I am extremely grateful that my new insurance plan covers both new medications. Dr. Z mentioned the possibility of surgery to sever the connections causing the seizures somewhere down the line as a big-picture type of view, but that’s something that I don’t think I would ever consider unless I had exhausted all types of seizure medications and other treatment options ever.

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I know that I said before that I was done with scans for a little while, and I still believe that. Dr. Z thought that moving on up to an every 6 months scan regimen would be smart, and I conceded with her there. Thus, my next MRI will be in June. I feel comfortable having one over the summer, while also knowing that I’ll only have two (hopefully) scans a year now. When I brought up my fear of recurrence, Dr. Z states that “Of all of the tumors to have, this isn’t a terrible one.” That actually made me smirk. It was something that I had been wanting to hear but no one would say it. This tumor isn’t completely devastating, but it also isn’t nothing. She said that there are some people whose cases you look at, and you can tell them that this is what they’re going to die of. That isn’t definitively the case with me, but it also isn’t something to completely take off the table somewhere down the road. This case and tumor are manageable, and I can do manageable. Hearing those words allows me to breathe a bit easier. When she took a look at my MRI, she pointed out a little section of tumor that still remained, but that had not really changed since my surgery 2.5 years ago, which was good. She said that keeping an eye on my noggin for the next 5, 10, and 15 years are important. The farther out I get from this surgery without recurrence, the less likely it will be for a recurrence to happen.

So, let’s try again. Let’s try to go four months seizure-free again, just like after surgery.