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: 

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#BTSM at #ASCO14

The American Society of Clinical Oncology annual meeting has released its 2014 Social Oncology Report, which details cancer conversations in niche communities, awareness, and pop culture over the past year. Breaking Bad was this year’s top pop culture highlight, naturally. There was a 52% increase in the total number of tweets from 2012 to 2013 at the American Society of Clinical Oncology annual gathering, convincing more and more physicians and researchers that social media matters in the context of cancer.

Waiting room conversations about cancer have migrated to Twitter. The power of hashtags, as detailed by Dr. Matthew Katz, a radiation oncologist, and regular attendee of ‪#‎btsm‬ chats, takes place on page 13. I am ECSTATIC to announce that #btsm (brain tumor social media) finished SECOND as the most frequently used cancer-related hashtag on Twitter over the past year. This means that people from around the world have been having meaningful conversations about their experience with a brain tumor, research, and more thanks to #btsm connecting them with each other. #btsm chats matter (Join us this Sunday at 7pm PST)! The brain tumor social media movement owes the history of our hashtag to the incomparable ‪#‎bcsm‬ community (breast cancer social media). Both of these grassroots efforts and communities have brought people together for support and information about their respective diseases at anytime, from anywhere in the world, for FREE. We both win, big time.

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MRI Findings and Update

The report from my neurosurgeon about my latest MRI scan read:

“I wanted to let you know that I reviewed the current scans on Catherine and everything looked stable going back to the first real postoperative scan in June of 2013. Again seen are some signals around the resection cavity which looks stable and either represents gliosis or some residual tumor cells. There is no contrast enhancement so for now we will assume that this is stable and will continue to follow this carefully with serial imaging. Thanks again for allowing me to see the followup films”

My initial reaction was: “ASSUMED stable?! What do you mean ASSUMED stable?!”

I panicked. If something was in the cavity that wasn’t there four months ago, then it had to be bad. Suddenly, I wanted an opinion that covered the other two brain tumor options – chemotherapy, radiation – as well. I wanted a neuro-oncologist. I went into research mode. The last time I went into research mode I selected four neurosurgeons, sent my scans their way, and had a craniotomy. Research mode doesn’t mess around. I located a neuro-oncologist in the area and began writing down dates and times that my schedule would allow for an appointment. I waited on the line while editing one of my papers (typical college stuff). I walked to class writing down the office’s fax number, and I told my Dad what scans and other information to include in the package. I was all in.

And then, I talked to a veteran caregiver. We met a few months back when her daughter and I also met. This mother is more than just a mother. She is a researcher and a fierce advocator for patients everywhere. She doesn’t settle for rescheduling excuses or test result delays. She demands the best for her daughter’s care and for the care of others. We talked about which specialist I should see, who else I should send me results to, her daughter’s reaction to Temodar, and finally, our own analysis of MRIs. She made me realize something huge. If the tumor was back and growing, it wouldn’t infiltrate an empty cavity. It would most likely do just the opposite! It would start attacking tissue, not growing back into a space that had nothing to feed off of. Scar tissue grows into empty cavities (duh). Whoops.

I have the neuro-oncologist’s information handy if I need it now, but all is well again. My next scan will take place in April or May, and I’ll go from there.

My first week of my second semester of college is just about to wrap up. Besides an insensitive professor, semester two is off to a good start.

I Met My Neurosurgical Duplicate

What are the odds that I would find someone else within a 5 year age range who has undergone brain surgery to remove a brain tumor, and spinal surgery to have a double disc laminectomy just like me?!

Well, an estimated 688,000+ people are living in the United States with a primary brain tumor, and an estimated 600,000 people have back surgery each year. Assuming that those numbers don’t double dip, factoring in age, location etc. our chances of meeting are 1 in (you do the math because I can’t!).

At any rate, we both exist, met, and somehow only live TWO minutes away from each other. Incredible.

Thank you for connecting us, Stupid Cancer.

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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.