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.

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Are you feeling better today?

Friends, professors, and coworkers have continued to be incredibly understanding of my temporary decrease in focus and energy levels. I missed several work meetings to nap the week before last, and everyone was completely ok with it. Those who weren’t aware of my brain tumor and seizure history at work were alarmed and skittish when I casually mentioned to them that I wasn’t making the meetings because I was trying a new medication and needed to rest. They then started asking me if I was feeling better the next day, the day after that, and the day after that, and eventually I just told them that I was feeling ok. Over the past seven or so years, I’ve come to learn you can’t expect those who haven’t dealt with a chronic condition before to understand that you don’t suddenly wake up the next day feeling better, as nice as that would be for them to understand. Regardless, all of my coworkers truly do care, and I’ve heard so many horrible stories from other college students with invisible illnesses about professors and coworkers treating them like absolute crap when they’re feeling sick or changing medications, so I truly am lucky to be in such considerate company. I’d also say that I am either gaining some of my energy back, or that I’m getting a little bit more used to the fatigue after the past three weeks of Zonegran, because this past week didn’t feel as bad as the first two.

The last two Zonegran side effects standing appear to be limited battery life and nausea. They pose the expected problems…

Problem: I still want to go back to sleep after just one class (way more than just a regular college student, I swear)

Solution: drink a chai tea with two shots of espresso as just the right combination to stay alert without getting jittery

Problem: getting everything I need to get done without falling asleep

Solution: plan the entire day out ahead of time, literally hour by hour, in order to spread energy levels accordingly, and allot time for some tasks to take place the next day if needed

Problem: the preschoolers I work with on campus on Tuesday and Thursday afternoons use up half of the day’s energy

Solution: hang out with the kids sitting in the sandbox instead of the cops and robbers lovers when it’s time to play outside

Problem: still relatively nauseous 24/7

Solution: always have ginger tea in my backpack so that I can drink some wherever I am on/off campus, whenever

Problem: decreased appetite re: nausea + in general

Solution: still working on it (/also sad because I love eating everything, all of the time). Your suggestions are welcomed.

bdday meme

Fun fact: it was brought to my attention this week that I was so out of it when I scheduled my six-week check-in with Dr. Z that I scheduled it for the morning of my 20th birthday at the end of the month. Cool.

It’s kind of like having the flu all of the time

The usual extreme fatigue, nausea, and bit of dizziness have made their presence known. Mood swings made a few surprise guest appearances as well. The last time I checked, working on statistics homework doesn’t normally make people want to cry. An acute episode of confusion visited one afternoon as well, where I had absolutely no idea where I was on campus. I exited the same building that I leave after a class twice a week, and have been for the past two and a half months having no idea where on Earth I was.

It felt like a scene out of a movie almost in slow motion, and after standing there in a foggy daze of looking back and forth and checking my phone to see if I went somewhere for an appointment, etc., I remembered where I was. Overall, nothing out of the ordinary or unexpected that won’t level off with time has happened since starting the new meds. The biggest nuisance is the need for naps in-between classes/meetings. I emphasize need, because there is no choice. Without taking the time to come back to my room and snooze there’s just no way that I’m able to stay awake because of how much the meds knock me out. Even keeping my eyes open while walking and riding my bike has been difficult at times over the past week and a half. If I’m walking with friends, I’ll give my eyes a little break and close them for a few moments to get some extra rest. I’m serious. Regardless of these short-term symptoms with any seizure medication, at least with those that I’ve had experience with, the immediate side effects are always the most intense. I am completely willing to give this medication a fully adjusted chance of another three or four months to see if it’s able to bring my numbers down. I’ve had a ridiculous amount of seizures this semester currently totaling up to 10 as opposed to only 4 from last semester. I have a six-week check-up with Dr. Z in another month to discuss how this medication regimen is going for me as well.

These side effects have made attending classes very, very difficult to stay awake through, but I haven’t missed a single one yet. I’ve trudged through them, coffee in hand. Some days all I think about is how much I want to be in bed sleeping, and then other days I think about how grateful I am to be sitting there and able to be taking notes with my right hand thanks to these seizure meds.

I had two seizures over the two weeks, and .5mg of a Klonopin wafer knocked them out both times, and much quicker than 250mg of Keppra had in the past. There was typically a 10-15 minute waiting period before I felt that the Keppra had a full effect on calming the seizure down, but I felt a difference within five minutes with the wafer because it dissolves into the bloodstream right away.

A week ago was the first day in 7.5 years that some form of Keppra didn’t enter my body. That’s nuts! I haven’t noticed any difference without Keppra in my system over the past week, but I figure that it’s hard to notice what symptoms are missing when new ones are being added right now. Eliminating Keppra from my list of medications means no more spells of anger when taking extra pills for breakthrough seizures, and I am definitely a fan of that.

I’ve been walking around and sipping from a giant water bottle full of ginger tea bags which helps with the nausea. I forgot what this was going to be like. It’s hard. It’s kind of like having the flu all of the time. But it’ll be worth it.

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.