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.

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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.

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.

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.