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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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.

Camp Make Your Heart Swell

I’ve spent the past three-ish weeks at Camp Mak-A-Dream, a medically supervised, cost-free camp in Montana for children, young adults, and families affected by brain tumors and cancer. My experience at Camp Mak-A-Dream (pronounced camp make a dream) was much different this year than last because I attended the brain tumor specific week for those ages 18-35 instead of 18 and under. I had anticipated the majority of attendees to be like me, attending college, starting to adapt to “the real world” post-treatment, and looking ahead into the future about long-term careers and goals. Some attendees were, but others were still developing social skills and hitting marks that they had missed along the way while going through treatment at younger ages. I was surprised to find that there were so many more widespread cognitive delays and intellectual differences between this group of participants than the teen group that I had previously attended. Regardless of where each of us was in our lives, we all expanded our camp families. I spent much of my time during the week as a camper documenting other participant experiences by creating “Humans of CMAD” modeled after Humans of New York which was a blast.

I spent part of the weekend between camp sessions out in the woods camping with the full-time staff, and had a blast. This was my first time camping at all, much less in Montana, and it was incredible. The hikes that we went on and views that we had were incredible. The rest of my time between my weeks as a camper and volunteer was spent helping out at RATPOD (Ride Around the Pioneers In One Day), which is camp’s biggest fundraiser of the year. The event raised over $400,000!!! 650 cyclers rode a 130-mile route to benefit campers even though it was freezing cold outside and it rained for most of the morning. Many of the cyclers stuck around afterwards to listen to four campers talk about what camp means to them. I was one of the campers to speak, and this is what I said:

“This camp changed my life. It was the first place where I met other people my age with my exact same obstacles, fears, and experiences. When I’m at camp I get to meet other people my age who too have experienced seizures and memory loss. There, relearning how to walk, talk, and rest from fatigue is the norm. We’re all on the same page. There are some things that you just can’t talk about with most people because they just don’t get it. Most people don’t know what it feels like to have awake brain surgery, or to sign an advanced directive like my friends from camp and I do. It’s hard to describe what camp is like because it’s so magical, and words can’t do the experience justice, but I’ll try.

Camp Mak-A-Dream is a place that reminds us that it’s never too late to become who we thought that we might have been before we got sick. Outside of camp we’re told that we’re different, and asked why we can’t just go back to the way things were before our treatment. We’re still struggling to find our new normal whether that’s five months or five+ years later. We aren’t the same people as we were before, which is very difficult for many people to understand. Our illnesses aren’t just a dot on our lives’ timelines because they continue to affect us psychosocially and cognitively even after treatment ends. The friends that we make at camp know what that feels like. Camp brings people together from across the country, and allows the noise of school, work, and families to be put on hold for a week. We are provided with the opportunity to open up about how treatment has affected our every day lives without judgment. We don’t have to explain why we take the medication that we do, because chances are that half of the rest of camp is taking it too! Campers don’t have to explain their leg braces, prosthetics, visual, or hearing impairments, because we all have a bit of at least one of them going on.

A side effect of camp is friendship. We find ways to meet up during the year all over the country. We text and Skype with each other reminiscing about our time spent at camp. As unbelievable as it sounds, some campers don’t have any other friends outside of the ones they camp. Camp Mak-A-Dream transcends all differences amongst people. It’s sometimes even joked about as camp make a baby because of the couples that it produces. Campers are able to find friends and partners who understand their same medical histories, something that is so incredibly difficult to do elsewhere. The amount of support that camp make a dream provides for its campers is absolutely unparalleled. Hearing about, and attending this camp is one of the best things that ever happened for me.”

Once the Teen Week session commenced I helped out in the kitchen on the Dream Team for most of the day, and elsewhere in between meals. I had a fantastic time bonding with the chef and our other volunteer. We spent just as much time joking and telling stories as we did preparing meals, and I was happily surprised at the amount of food that is actually made fresh given the mass quantity demanded. Most of the volunteers were former campers, child life specialists, or radiation therapists. One had been reading my blog before we had met, which I thought was pretty cool! The child life specialists and radiation therapists expressed throughout the week how this camp was the first time that they had ever interacted with patients outside of a hospital setting and had gotten to know their personalities, not just their patients’ cases. Many of these volunteers were from Michigan, and all arrived in one massive group in matching t-shirts. Dozens of teens from the same hospital center in Michigan had never met until this week. It’s shocking to think that so many people could be treated in the same small hospital, live in the same city, team up with the same care providers, under the same circumstances, and not get to meet each other until flying across the country.

Seizures made two unfortunate appearances while I was in Montana. The second could have been avoided, but the first was out of my control. The first, and worse of the two happened during my week as a camper when we went to a bowling alley. All of the loud noise, bright lights, and flashing games threw me for a loop, and I ended up going in and out of seizures for the remainder of the day. I spent that night in the health center just to be safe because an extra dose of Keppra didn’t help ease any of the events up. I eventually ended up taking Ativan, which seemed to relax my clenching hand, and help me to sleep everything else off. The second seizure instance at camp happened during my week volunteering. I had spent the night before staying up and talking with friends instead of going to sleep early, even though I knew that I had to be up the next morning.

Up until this week I had not interacted with kids who have lost limbs due to their cancer treatments, and it was a really humbling experience. These kids hopped their way up rock walls, navigated high ropes courses, swam, and made their way around campus without a problem. Their confidence to wear prosthesis or opt not to was incredible. My life challenges of living with an invisible illness are nothing compared to theirs of living with a visible one. They were stared at as we moved through the airport to board our planes, given pity looks, and sometimes even purposefully ignored. I never experienced any bullying for having short hair or a brain tumor, so I just assumed that bullying wasn’t a problem for kids with serious health conditions. I was wrong. I heard multiple stories about kids getting harassed for being bald and having cancer that made me sick to my stomach. When I think about how people act towards kids with cancer I think about compassion and kindness, but apparently that’s not the case with middle-schoolers and high-schoolers, which is a huge shame. These phenomenal kids are spirited, gritty and bold. I’m used to internally rolling my eyes as people tell me that I’m an inspiration. As a volunteer, I was able to be the person on the outside and looking in at such incredible, inspiring kids. They’re all going to change the world, whether they know it yet or not.

We all have to grow up a little bit extra to qualify for cancer camp, but once we get there, we get to be a kid again. I mean, where else can you spend the day making friendship bracelets?

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Planning

I’m starting to set some long term, tentative goals for the next couple of years. They are particularly goals about community involvement on campus, and patient advocacy in the chronic illness arena. These goals are about both events, and mindsets. I’ve never really been much of a goal setter, but I’ve felt like mapping things out more recently. The more time passes since my surgery (it has been about one and a half years now) the more comfortable I have become with thinking longer than a few months ahead. It feels good to be able to, and to feel comfortable enough to plan more long-term again.

While I have begun focusing on the long term again, I’ve started to overlook my health in the short term. I’d like to think that I can do whatever I want now that I’ve had my surgery, but that’s not the case. I’ve gotten into a rhythm where I’m tired for much of the day, but start to regain energy at night once all is quiet and still. I find myself having to glean through fragmented thoughts throughout the day before finding some that I can latch on to.  Then, the lack of stimulation from outside forces seems to fire my brain up with ideas at night, and it’s hard to go to sleep once organized thoughts actually become accessible. This fatigue/lack of sleep/stress combination continues to bring on plagues of seizures. I don’t like laying in bed and resting when there are other things that I could be working on, or other places that I could be. I was committed to logging each and every one of my headaches, seizures, etc. for several months in the fall/winter, but I have taken a break from that because I feel that the numbers are irrelevant at this present time. While logging that information is very important, and something that I should probably be doing as a responsible patient, I am currently content with the medication dosages that I am taking. Those numbers would primarily signal a need for change in medication, and that is not something that I am interested in doing, at least not now with finals approaching.

In other news, I am meeting up with some of my cancer crew tonight during the Phoenix stop along the Stupid Cancer Road Trip. We will all be in Las Vegas for the OMG! 2014 Stupid Cancer Summit this time next week. I have quite a few thoughts about what to expect, who I will meet, etc., and I think that my post-summit blog post will cover a gamut of topics both about and outside of cancer and patient advocacy. Stay tuned.

National Brain Tumor Society 2014 Phoenix Walk

This past Saturday was the National Brain Tumor Society‘s 2014 Phoenix Walk. There were 1,300+ people in attendance and the event raised $126,000 towards research run by the NBTS. The Liz Army‘s face was plastered on a banner to represent the voice of survivors and patient advocates. I sent her a text with a selfie as evidence. I really liked the set up of the event – well organized tents with clear and simple banners. I was joined by two close friends who were surprised that I was even awake enough to walk. I got up at 5:55am to get at the event early and help out – I hadn’t been awake that early since I took the ACT. I was able to talk with the woman running the event and disperse #btsm handouts too, which will hopefully provide a new support system for those in attendance.

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All of the survivors stood on stage for a few minutes and took photos. It was easy to identify other survivors for the most part because we were all given gray t-shirts to wear. I was a bit disappointed that there were not many adolescent/young adult survivors present, though. I wasn’t able to interact with all of the other survivors who were in attendance because I tired out after 3/4 of the walk and left early to rest. This walk was comprised of the largest brain tumor population that I had come in contact with at an event, and I’m glad that I was able to attend.

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I’ve had more headaches and seizures recently, so that’s all for now.

Dear current and future educators

Please do not breach your student’s privacy and loudly announce that they are “the one with epilepsy” in the middle of a lecture hall full of 199 other students. Also avoid stating that you are “sure that someone in a room full of 200 people will know what to do” if the student has a seizure without taking the time to ask about precautionary measures you yourself could take. Do not proceed to ask how often the student has seizures, once again loudly in the middle of the lecture hall, as well as assume that it is ok to announce a student’s affiliation with the Disability Resource Center. Such acts are highly offensive, inconsiderate, and unprofessional. 

Sincerely,

A fuming student

Health > School

I had a seizure last night, and it actually scared me. My absent mindedness threw my brain for a loop.

My brain has been running a marathon over the past week studying for and taking two exams in combination with working on two papers. I definitely could have used more sleep, but I pushed myself. I wanted to stay up with friends chatting in the hallway. I wanted to wake up early to meet with a professor kind enough to reteach me a lesson. I gave myself the benefit of the brain doubt – that I would be ok with less sleep..that I could do it.

My schedule is set so that I can sleep in as late as 1pm if necessary on Fridays. I woke up much earlier yesterday and met with a professor who volunteered to do me a huge favor. I completely zoned out after taking an exam on Wednesday and missed his class. I remember the basics of what I did between the exam and when I realized I had missed the class, but I’m fairly certain that another mini-seizure took place that day. Instead of using yesterday to recharge, I used it to recover for lost time. Bad move.

I was tired in the morning. My right pinky and ring finger started to curl in the early afternoon. By dinner time I started to mix up sentence structure and slur a few words every couple of sentences. Yet, I told myself that I needed to work on a paper. I wanted to be productive. Three hours of staring at a computer screen and getting nothing but typing quotes later, my right middle finger dropped. I decided that typing with one hand when I barley even had anything to say wasn’t good for my paper or for my brain. I called it a night and walked back to my dorm from the library exhausted, and slightly confused. Per usual, my right cheek started to feel heavy, the use of my right hand and arm slowly faded away, and my right leg started to feel unbalanced. 

I was laying in bed when the sensation started to progress, but I didn’t want to try and sleep. I didn’t want to be alone. I wanted to get up and walk around – prove that I could do whatever I wanted. I was pissed at my body. I complained, mumbled, and groaned out of frustration while a friend comforted me. The heavy symptoms lasted for about an hour and a half until they had significantly faded. 

The scary part about yesterday’s seizure is that I chose to ignore that it was going to happen. I recognized the precursor symptoms building throughout the day and didn’t recognize them as warning signs. I convinced myself that I was just tired. I actively chose school over my health.

Never again.

College vs. Health: Can Both Win?

I don’t know if I’m supposed to push past my health or not. If I spend most of my time focusing on my health, then my work is sub par. If I spend most of my time on my work, then my health depletes (cough and I end up getting mono cough). There isn’t one clear answer.

Do I put my health challenges aside while in class and address them later? 

I was sitting in the middle of my toughest class last night when my right hand, arm, and leg started to feel heavy (the hallmark of my seizures). As I sat there and contemplated what to do, I realized that although I had two choices, it really only felt like I had one. I could have gotten up and left the room to head back to my dorm and sleep; Instead, I remained seated. If I left class every time I felt the warning signs of a seizure, I would leave class all of the time out of fear, and I can’t pass a class with spotty attendance. As time went on my symptoms lessoned, and I ended up earning a 10/10 for discussion points – a feat I’ve only managed to achieve three other times this semester. I always seem to rebound from..just about anything, really..like a champ.

I’m not sure if I’ll continue to look past symptoms while in class. Attendance and participation are necessities, but aren’t my misfiring synapses too?

Plight of The Paper

I’ve been worried about seizures more than usual recently.

I pulled my first “all-nighter” on Thursday/Friday to complete a paper. It wasn’t like I procrastinated and saved everything for the night before the deadline – I had worked on the paper for two solid weeks. I made four appointments with the writing center, two office hours visits with my professor, and talked through edits by five of my friends. Yet, I still needed more time to formulate ideas and put my words into writing. This paper was also the first analytical essay I had written since my brain surgery, so it was a test for my memory, overall writing skills, and confidence. There’s only so much you can write about Antigone!

Sigh…there’s actually a lot you can write about Antigone. I scraped by with five pages out of the 5-6 page assignment.

In some ways, college actually IS more stressful than awake-brain surgery! Compensating for my deficits is draining. Working harder than my peers for the same results is disappointing. With a 3.7 GPA in high school while taking predominately honors classes, I’m used to being one of the best in a highly competitive academic environment while working equally as hard as everyone else. It’s very new for me to be behind from the start of the race. Everyone enjoys a good comeback story in sporting event, but it’s the domination of teams from the start that blows you away. I miss dominating. Speaking of comebacks, our flag football team is 0-3; We didn’t make the playoffs, so tonight is our last night to shine and hopefully get the W!

Back to seizures: I had my first medium sized seizure last night since I’ve started college. I’m assuming that it stemmed from Thursday/Friday’s lack of sleep finally catching up to me. My roommate was a big help and she made sure I felt ok to fall asleep before she left me alone. The seizure was atypical and started in my leg and face, rather than my hand and arm. My right hand curled up as usual and started to feel heavy with a lack of muscle control. As a college student, there really isn’t time to stop and think “Ok, I had a seizure yesterday, so today I should be careful and do x, y, and z.” Classes don’t stop, and homework isn’t delayed. I felt groggy throughout today but couldn’t just not go to class. I was SO close to leaving my physics class to nap, but I willed myself to stay and grabbed some coffee afterwards to stay awake.

After Thursday/Friday’s late night/morning, I wondered when the seizure would hit me. I knew it was coming. Unfortunately, it always does; Lack of sleep is my biggest seizure trigger. I wondered, if I didn’t seize the following day, then when would it hit me? Would I have my usual symptoms, or something new? Would I be in the middle of a big crowd? Would someone know what to do? As a precaution and out of fear, I’ve been sleeping with my medical alert bracelet on. I figure having the bracelet on would help in case someone ever found me unconscious.

Check out the article “I Don’t Know How to Be Anything But A Patient” when you get a chance. I think that the article, particularly the bottom half of it, is a great representation of life post-cancer, brain surgery, or any type of major health condition or event. As the author Kate Sievers says, “I wish they would’ve taught me how to deal with this in cancer school.”

I haven’t heard back from my neurosurgeon yet, but I should get a report by the end of this week. I’ll post about his report when I hear the latest and greatest news.

First College Mishap

I thought I was being bold by playing on the intramural flag football league here on campus, but I ended up being bloody. Last night I was part of a collision during the fourth play of my team’s first practice. With my medical luck, the collision was in the general vicinity of where I had brain surgery. The CT scan came back fine..phew. The PA said that the fist 12-24 hours could be a period of heightened seizure activity, but 24 hours have now passed so hopefully I’m in the clear! I slept in my community assistant’s room so that someone would be right there in case of an emergency (my suitemate and I have a bathroom + two walls separating us). It’s also reassuring that I have one of my every-four-month MRI scans in another week or two so my neurosurgeon can take a look at my precious noggin soon anyways.

Welp, five stitches later and the gash barely peaks out from my eyebrow. Phew! It looked A LOT worse before the stitches. I’ll get them out on Saturday and then my eyebrows will be back to their glorious form. An attending med student stopped by to take a look and I could tell he was prepping to do the stitches himself. I casually asked him why he went into medicine (he appeared to be in his mid-thirties and a bit past the typical med student’s prime), and he told me he used to be a family therapist on the East Coast and simply wanted a change. I quickly asked who would be doing the stitches and then requested for the PA to stitch me up instead. In my mind, PAs are doctors who just get paid less. Always speak up as a patient to ask for the best treatment possible! Patient advocacy at its finest.

I’ve been nauseous and with headache throughout the day, but things could be way worse! The headache associated with this collision is nothing compared to my usual headaches so that’s a relief. This headache is probably a 2 or 3/10 as opposed to my usual 6 or 7/10. I skipped my English class this morning and then went to my physics lecture/lab in the afternoon.

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I’d say that I maybe I should have joined a fantasy football league instead, but in all honesty I would have hated that! I love competition, especially in the sporting arena. We had our first game tonight and got mercied, but we’ll improve! We can only go up from here. I plan on bringing a white board to draw plays and shouting out quotes from Friday Night Lights during next week’s game.