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.

Semester 3 + Neuro Update

Three semesters down, three to five more to go. This semester went very, very well all around. Academic highlights include a 4.16 GPA, and being asked to TA for a course next semester.

The biggest medical highlight was only four seizures in the total four month span, which is much better than the three or four seizures that I averaged per month in the 2013-2014 academic year. While I am not, and have not been 100% seizure-free since 2007, I am very pleased with the decreased rate at which the seizures have been occurring. It feels freeing to not have to expect clusters of them popping up all of the time.

I’d like to start to plan my life with the possibility of seizures one day being out of the picture. I asked my neurologist if she thought that I could taper off of my seizure medications one day. Unfortunately, as soon as I asked, she bluntly responded (with kindness in her voice and eyes, though) that that was very unlikely to become an option. I cried a little bit, and I nodded. I understand that epilepsy is a lifelong condition. But, in all honesty, I never imagined life without it until the seizures started to decrease as much as they have. It’s hard to be let down about the possibility of good news when I’m so used to simply accepting the unpreventable bad news.

Today’s appointment also brought up the possibility of a PET scan. I had my one and only PET scan two years ago, just before my surgery. My insurance changes at the end of the month, so now would be the time to have one if there were ever a time. On the most basic level, PET scans show you the metabolic grade of the cells, whereas MRIs show you a picture of where the tumor is hiding. My neurologist always covers all of her bases and is extra cautious, and I appreciate that. She is going to check with the neurosurgeon I once saw in Michigan, Dr. M, who she happens to be friends with, and let me know what he thinks just to have another brain in the mix. I emailed Dr. B to ask about what he thought, and he responded within 30 minutes saying that “I see no value in a pet scan.” That’s a pretty powerful statement. With that being said, if Dr. M doesn’t think that the extra scan is really necessary, then I’ll continue to just stick with the every-four-months MRI plan as Dr. B has recommended. I have my next MRI scan scheduled for the end of this month, actually. And, given Dr. B’s certainty in his response, I’m not quite sure what I’ll do even after I hear Dr. M’s response about the PET scan.

At the end of the day, my neurologist spent two hours with me, and for the third time now, I have been the last person in the office when they close. She is someone who really cares about her patients. She recorded today’s appointment in part of a study a company is doing with her practice to create better physician-patient interaction and discharge plans. The appointment resulted in the decision to change taking the 250mg of regular Keppra that I take at night, to taking 250mg of extended release Keppra in the morning. This makes sense, because the four seizures I have had this semester have all taken place during the day. She also recommended that I have another EEG, but I passed. I’ve had three or four EEGs over the past five years, and I always end up spending five days in the hospital for nothing.

I’m going to take the free time I have outside of doctor’s appointments during the rest of this month off to curl up with a few good books, and to enjoy all that Netflix has to offer.

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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Neuro Visit + Upcoming MRI

I saw my neurologist earlier this week. Even though the number of seizures decreased in September and October, I still had the same number of them in August as I did in November after a medication increase. Numbers: 4, 3, 2, 4. We discussed adding more Keppra or a third medication because of the numbers. I am not in favor of adding more meds because Keppra makes me extremely fatigued, and I also don’t want to add a third medication at the start of a new semester with unknown side effects. We decided to continue my current Vimpat + Keppra combination for now and see what December and January bring number wise and go from there.

She also told me about Todd’s Paralysis, which is what I experience for a day or two after my seizures. Sometimes it’s just nice to have a name for an actual condition to know that whatever is going on is a “real” thing.

I had a lot of trouble with car rides stirring up nausea after surgery, before I went to college. I wasn’t traveling in the car very much at all during the past semester, so I had forgotten about the problem. We visited family who live about 30 to 45 minutes away last night and the car ride was pretty bad. I felt sick for most of the night. Yuck. The experience stirred up memories about cab rides in San Francisco.

My next MRI is in one week on December 27th.  We’ll drop off hats and other resources for the center’s library as usual. This will be my one year and four month scan since surgery. It’s a few weeks early, but this way I can have it done when I’m at home rather than rushing around to get it done while I’m back at college. For the first time in over a year I actually don’t feel that nervous!

Spikes

The 6th, 8th, 9th of November, and today have all been seizure spikes. I was too tired and dealing with residual symptoms to write about them until tonight. Each event lasted for up to an hour and a half before serious symptoms started to fully fade, but all left residual effects for days. My right pinky, pointer finger, and forearm remained weak and partially numb/heavy for most of this past week, which was very inconvenient because I had to writing a paper. Three or four seizures a week was a typical, sometimes even a “good” week for me five years ago. Now, more than three or four a month is off the charts.

Three big events in such a short time frame the week before last warranted a chat with my neurologist. I texted her to give me a call (Yes, we text each other!) to discus recent events when she had a minute, which ended being midnight her time. Some doctors work a strict 9 to 5 Monday – Friday and then fall off the grid. My doctor is on-call for her patients anytime, anywhere, any day of the week. She is incredible.

I went to the health center and had labs drawn to check my Keppra and Vimpat levels the week before last – the consensus is that there must not be enough of the two of them in my system, prompting these seizure spikes. There was a fax number mix-up getting the script to transfer out here from Michigan, but the script was eventually received. Now that the old levels are being checked out, my neurologist has added another 100mg of Vimpat. It has been a little over a week since the labs were drawn, but neither my neurologist’s office nor I have received any report in the mail yet. Being the über-patient that I am, I am going to stop by the health center on Monday and track down my results.

I don’t consider these seizures setbacks, but I definitely consider them obstacles. It’s tough keeping a positive attitude when dealing with something that most of my peers are typically unaware of, but I will continue to “dodge, dip, dive, duck, and dive” around anything thrown my way. I’m an underdog, and it’s my job to rise to the occasion. I do what I have to do to create as close to a level playing field as possible for myself.

chart snapshot

Symptoms are numbered 1-5 in order the of when they presented. Boxes are blank if symptoms did not present in those areas.

Here’s to improvement. The less seizures, the better. I’m awaiting the lab results and then we’ll go from there.

Whoops

I took the wrong pills this morning for the first time since starting college.

I accidentally snagged my night-time seizure meds instead of my day-time combo. Luckily, the only real difference was taking an extra Keppra (which I now only take at night) in combination with my usual Vimpat. I thought I would feel wiped out during the day because of the med mix-up, but surprisingly I’ve felt more energized and focused. The effects are counterintuitive, seeing as I took more seizure meds this morning, and seizure meds typically make patients groggy.

Helpful medication tip: pick a day to sort out your pills for the week and stick with that day as a refill routine. If you’re taking several different medications, use a weekly medication container so that each time slot is easy to grab-and-go when you need them.

It’s worth noting that I did end up with symptoms associated to the medication mishap. Spells of a common side effect associated with Keppra, the “Kepprage,” hit me for about two days following the double dose of Keppra. I maintained my schedule of taking Keppra at night the same day that I accidentally took it in the morning, which meant doubling my Keppra levels.

Backstory

September 2007:

I started experiencing bilateral tingling and numbness anywhere from my ankles to my cheeks at least four or five days a week. Doctors thought my symptoms were anxiety due to 7th grade. Three months of misdiagnoses including questionable heart studies and diabetes pricks later, an MRI was finally ordered. A brain tumor story was born.

My initial reaction was excitement. The diagnosis meant that there was a reason behind the symptoms I felt. After months of weekend and occasionally week-long hospital visits, it was determined that the tumor was both benign and not life-threatening enough to warrant surgery. Oddly enough, the only information put in laymens terms for my parents and I to take home was that the tumor was on the “front, left side”…nondescript and painfully inaccurate as I would find years later.

2008:

The symptoms were diagnosed as mini focal seizures, and I started anti-seizure drugs. The first, Topamax, gave me hallucinations during math class. It had to go. Then, Keppra entered my life. I went on to live the next five years taking Keppra and napping. All while gloriously somehow foreseeing my eventual brain surgery  *spoiler alert*

2009-2010:

My interest in brain tumor and other cancer related groups skyrocketed. I became fascinated with Facebook groups (the first of which was the Tumors Suck page) to connect with other people “like me” – that is, people living with or survivors of brain tumors. I researched genetic links to various types of brain tumors, but none of the information was helpful for me yet because I knew next to nothing about my tumor. I continued to research regardless of if it was for myself or for others. I had a feeling deep inside that my tumor wouldn’t just go away..that it would eventually need some sort of treatment..

March 2011: ruptured L4 and L5 from a series of tennis injuries..underwent spinal surgery at 16 like a champ. The surgery gave me back an unmeasurable amount of quality of life – I was able to sit for longer than 10 minutes without crying! I was left with some slight nerve damage in my quads but that didn’t matter much, now that I can exercise, watch movies, and sit in a chair at school.

March 2012:

My annual MRI report read “density increased” and it was game on from there. My first thought was: “If the tumor was benign, it wouldn’t grow, so what new density would be showing up?” Technically, that thought was wrong. Benign brain tumors can and a lot definitely do grow! Regardless of my train of thought, a PET scan confirmed that comet tails were shooting out of the tumor and were starting to infiltrate other areas of the brain. I didn’t learn until practically five years after my initial diagnosis where the tumor was actually located: the left insula, located between the frontal and temporal lobes.

September 4, 2012: Awake brain surgery at UCSFImage

I’ll leave the immediate research, traveling, and selection process of my surgeon for another post.