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.


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.