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!

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Done for A While

My scan from last month came back stable, and now, I’ve decided to discontinue my regular MRI scans indefinitely. For the first time since my surgery, I didn’t foresee trouble while I waited for my results. I allowed myself to sit within, instead of fearing the unknown.

It didn’t seem possible, but I think that I might actually be letting go of some of the fears I’ve held about recurrence over the past two years. I’ve realized in recent weeks that I might be subconsciously living in perpetual fear that I might escape it, that I might break away and suddenly elude my condition. When you are so used to living in one mindset, it’s easy forget what it’s like to live in another. And while I like schedules, concrete plans, and always being in the loop about what’s going on, these scans are one component of my life that I no longer want to know about. I’ll know when I need to have another scan either by identifying a new symptom, or by feeling in my heart that it’s time. With this matter, it’s ok not to plan.

To put it bluntly, I’m over it. I’m done with the alarms going off in my head that there’s bad news because Dr. B is taking longer than usual to get back to me. I’m done with my heart beating fast enough to outrun Usain Bolt when I see an email from Dr. B sitting in my inbox. I’m done with the stress that comes with scheduling MRI appointments just to hear that everything is still the same (which I recognize is a good thing, of course). I’m done with waking up the week before a scan, and wondering if next week is going to be the week I’m told that I’m dying.

But to be honest, I’m afraid to abandon the super-sick normal I’ve been living in over the past six or so years of my life. I’m afraid that I’ll get a taste of a brilliant, new normal, just to go back to being sick..because that’s what happened last time. It was in the spring of my junior year of high school when something like this last happened. One day, I just woke up feeling free. I had accepted that I had been living with a brain tumor for years, and reached a point where I became comfortable believing that it would probably just stay that way. I let my worries go, and it felt incredible. I spent the next two months feeling what I can only describe now looking back on it as open. I was open to myself as a complete person. I got to know myself and other people without worrying that one day my health would come swooping in to steal the show again. But then, it did. I am afraid that the new life I’m about to adjust to might only be temporary. This also might be the beginning of the rest of my life in the best, and healthiest way possible.

“But, don’t you need those scans to make sure you’re still healthy?”

Healthy isn’t panicking over the possibility of bad news every 4 months. I’m not really living while I still have those scans to think about. I’m not saying that I’m done with them forever, but, I’m done with them for now. Maybe my next scan will be in a year. Maybe it will be in two. Or, maybe it will be in another four months.

Having a brain tumor is part of my identity, there’s no doubt about that. I am still a college student, though, and I want to be able to wake up, feel, and live that way too. Living is not thinking that I’m going to die every four months. Living is somehow taking time to forget that you were ever sick in the first place. Living is not being afraid of dying. And while I’m not afraid of dying, I’m afraid that I haven’t really been living for a while now.

This isn’t “giving up.” This isn’t giving in to pressure from anyone or anywhere. This is opting-out, for now.

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: 

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.