Four years later

My awake-craniotomy took place 4 years ago today. Things that would have been long-term goals 4 years ago are now just things on my to-do list for this month. Things that I never thought I’d see happen are now daily occurrences, in the best way possible. I got better, but not everyone does. I had a great support system, the financial resources to weigh my options and select my surgeon, and the time to do so. My latest MRI was last month, and everything is still stable. Even so, every day is a tightrope walk of accounting for sleep, taking medication, and managing symptoms. My life wouldn’t be anything like it is now if it wasn’t for this patient experience, and I wouldn’t change it.

Community engagement has always been how I’ve processed. We’re talking about the financial impact of being treated for a brain tumor during tonight’s #btsm chat (6pm PST/9pm EST) – all are welcome to join, share, and learn.

Here’s a video of me giving an update four days after surgery, four years ago for a fun flashback.

Semester 6 + Summer Update

As usual, I was hyper focused on school this semester. Everything worked out well in that department, and the semester wrapped up with a 4.05 GPA, bumping my overall GPA up to a 3.97. I’ve said it before and I’ll say it again – academics have become my arena for competition now that I no longer compete in sports. Scoring high on an exam, setting a curve, or receiving praise from an instructor is my way of winning tournaments or being seeded at the top of a bracket. I haven’t lost my competitive nature, I’ve just channeled it elsewhere post-sport era.

I had the opportunity to take several courses relating to healthcare administration this semester, which were a blast. It was within these courses that my interests in research were highlighted even more so than ever before. I’ve also spent more time exercising this semester than I have in the past several years, and while I am (DEFINITELY) not the strongest person in the gym, I take pride in marking off the number of days that I work out each week in my calendar.

I may not play tennis or do the same things that I used to do before my surgeries, but I can still do so many things, and that’s important for me to realize. While part of life after all of my medical experiences is adjusting to the medications, need for extra sleep, and increased interest in brain tumor research, it’s also remembering that not everything is different. Many things are still the same. I’m still figuring my life out just like any other college student. And, the best part is that my concerns and dreams are starting to expand out even further past three or five years to ten years and beyond. I never would have thought that having concerns about the future would be a good thing, but when you used to spend every waking moment worrying about if you’re going to be alive next week, being able to worry about where you’re going to be living in 10 years is a strangely nice worry to have. My next MRI scan is in August, I’m starting to feel like everything in my life has hit a stride that makes sense. The only thing that could really go wrong in it right now is another brain tumor popping up, and, I’m really not planning on that happening!

I am spending my summer in the Child Development Lab here on campus and in the Child Life department at the children’s hospital I was at last summer, as well as continuing to conduct interviews for and work on writing my thesis. It has been incredible to hear families tell me their stories and have them open up to me in the ways that they have. What parents have said is what has stuck with me the most, though. I think that this may be because as much as I have asked my parents what it was like for them during the worst of my surgeries, testing, etc., they couldn’t have truly opened up to me because they were still trying to protect me. The parents that I’m interviewing have no reason to omit information and protect me from anything, though. I think back on when my dad first took the bandage off of my head after surgery and how he told me that it didn’t look “that bad,” and how I believed him. He went on to tell me months later that it looked absolutely horrifying, and how my mom almost threw up it was so bad. In that moment and upon first sight, my dad just wanted me to know that even though I had just had a life-altering and major surgery, something as irrelevant to my future as a scar was the last thing I needed to be worried about.

I’m also writing personal statements and applying to graduate schools where I’m hoping to pursue a master’s in social work with a health specialization. I have another exciting opportunity involving writing, research, community building, precision medicine and cancer care, but I can’t say what it is quite yet!

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.

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.

two years 2

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: 

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.

2014

2013 was all about:

  • My scans
  • My surgery
  • My college acceptance letter
  • My [ongoing] recovery
  • My reintegration
  • My seizures
  • My medications
  • My appointments
  • My ability to attend college

2014 will still involve almost all of the above. In preparation for the year I have:

  • Located an MRI center close to campus
  • Familiarized myself with a local hospital (whoops)
  • Sent scripts to the Walmart pharmacy across the street
  • Scheduled most 2014 appointments already
  • Recognized that sleep is the key to a seizure-free life (I’ll get there one day)

My hope is that 2014 will feature less flashbacks and bring more laughter to the table.

My 2014 brain tumor related plans are up in the air right now. I don’t have a set focus just yet. I could lobby with NBTS (completely uncharted territory). I could fundraise (eh..been there, done that). I could technically work in a research lab (18+..but science..). I could do a lot of things. I will do my best to continue to keep #btsm chats up and running.

There is one thing that I can guarantee for 2014: I will continue to let my roommate clean the bathroom. She does it because she knows that I won’t. 

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.