A surprise worth sharing

Being here, senior year, is a surprise worth sharing.

I thought maybe I would make it through the first, or second year of college. Then I would have a recurrence, go through treatment again, and die. It wasn’t just a fear; it was statistical and founded in research. Brain tumors are the number one killer of those under the age of 19 and with my tumor type a recurrence within the first two year isn’t all that uncommon. Now at 21, I am graduating college. I have not had a recurrence, and I am stable. My next scan is coming up, but I’m not even worried. In fact, I forgot that I even needed to make the appointment. Whatever happened to scanxiety?

I never thought that I would make it to this point. When I entered my freshman year of college it had been less than a year since my awake-craniotomy. I was still having flashbacks to surgery on nearly a daily basis. My life was living in fear moment to moment, wondering when the next seizure would hit, when I would be told to pack up and come home to live with my parents because I couldn’t safely live on my own anymore. I thought that I would go to school for as long as I could, learn as much as I could, and just try to experience as much as possible for as long as possible.

This didn’t really hit me until I defended my thesis because a thesis is something that people plan for. They start their research early, they select committee members, and they write for years. I did so, but I didn’t expect to actually follow the plan through to the end, because I didn’t think that I would get the chance to. The night before I defended I realized how shocked I was to be in this position. It was so…satisfying. The same professor I met my shell-shocked freshman year, back when I couldn’t sit through a film in class because the sound was too loud, was the same committee member that I met with every week this semester to put the finishing touches on my thesis, and the same committee member who saw me blossom into someone who believed in the possibility of a future.

For so long I just didn’t think that one would come. I was so afraid of tomorrow, of next week, next month, the next scan, that when I finally started being able to plan years in advance it seemed beyond my wildest imagination that I would actually get there.

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.

I’ve been trying to forget

I’ve been trying to forget what magazine subscriptions belong to which waiting room offices. I’ve been trying to forget the names of receptionists, and the faces of which technicians blow veins.

I’ve been trying to live a normal college student life.

Well, the music is too loud. The hot yoga classes are too early in the day. And, the excitement over the new (mediocre) Asian cuisine restaurant is overrated.

I filed a maintenance request to fix my bathroom door that had somehow come off its hinges last week. As the custodian’s drill bit whirred and the screws brought the door back to the wall, I remembered. Dr. P’s face came back in focus and he asked me to identify the objects and letters appearing on the screen, pressing the spacebar to set off the thick, mechanical swooshing sound that moved from one picture to the next. I hadn’t seen his face in two or three weeks, and that had been a victory.

We briefly talked about axons, dendrites, synapses, and other basic neuroscience in a class this week. We brushed right on through the PowerPoint slide, not evening mentioning the duties of each lobe and delicate area of the brain. I wanted to pipe up and explain their functions, but I didn’t. The word plasticity was mentioned, and I remembered the sound of Dr. B’s voice. I remember his reassuring response to my questions, reminding me that the brain rewires and relearns.

I’ve been trying to forget, but all I can do is remember.

I have been trying to distance myself from my medical memories and subconscious patterns of reminders over the past month, but life keeps calling myself back to remember. These memories are haunting me, and they mean something. Maybe I’m not ready to forget, or, maybe it’s that I’m not supposed to?

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: 

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. 

MRI – What If My Brain Tumor Respawns?

Typical college distractions include struggling with time management and substance abuse. My biggest distraction in college? Waiting to hear if I have a reccurrence.

What would an active college student do upon reoccurrence? From what I’ve heard they would take a year off, start online classes, or eventually just graduate late. Of my friends who are battling reoccurrences, most are still enrolled in college in one way or another.

A reoccurrence would mean starting a whole new life, again.

The thing is, my MRI looks completely fine. Or at least it looks fine to me. The surgical cavity is still pitch black. No new white or bright spots, no new wisps around or within. In fact, this MRI looks better than the last because it doesn’t have an artifact on the scan to scare me. Although the worries might not be warranted, they still exist. Two friends (and fellow cancer survivors!) accompanied me to the appointment yesterday. MRIs are always better with ice cream and friends.

mri

I sent a package with the MRI on a disc and a note enclosed to UCSF today. The package should arrive in San Francisco on Thursday, September 27th. Coincidentally, I was originally diagnosed with a brain tumor sometime between September 25th and the 29th in 2007 (as time goes on have forgotten which exact day it was). I hope to hear back from my doc by October 4th.

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.