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.

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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?

Semester 3 + Neuro Update

Three semesters down, three to five more to go. This semester went very, very well all around. Academic highlights include a 4.16 GPA, and being asked to TA for a course next semester.

The biggest medical highlight was only four seizures in the total four month span, which is much better than the three or four seizures that I averaged per month in the 2013-2014 academic year. While I am not, and have not been 100% seizure-free since 2007, I am very pleased with the decreased rate at which the seizures have been occurring. It feels freeing to not have to expect clusters of them popping up all of the time.

I’d like to start to plan my life with the possibility of seizures one day being out of the picture. I asked my neurologist if she thought that I could taper off of my seizure medications one day. Unfortunately, as soon as I asked, she bluntly responded (with kindness in her voice and eyes, though) that that was very unlikely to become an option. I cried a little bit, and I nodded. I understand that epilepsy is a lifelong condition. But, in all honesty, I never imagined life without it until the seizures started to decrease as much as they have. It’s hard to be let down about the possibility of good news when I’m so used to simply accepting the unpreventable bad news.

Today’s appointment also brought up the possibility of a PET scan. I had my one and only PET scan two years ago, just before my surgery. My insurance changes at the end of the month, so now would be the time to have one if there were ever a time. On the most basic level, PET scans show you the metabolic grade of the cells, whereas MRIs show you a picture of where the tumor is hiding. My neurologist always covers all of her bases and is extra cautious, and I appreciate that. She is going to check with the neurosurgeon I once saw in Michigan, Dr. M, who she happens to be friends with, and let me know what he thinks just to have another brain in the mix. I emailed Dr. B to ask about what he thought, and he responded within 30 minutes saying that “I see no value in a pet scan.” That’s a pretty powerful statement. With that being said, if Dr. M doesn’t think that the extra scan is really necessary, then I’ll continue to just stick with the every-four-months MRI plan as Dr. B has recommended. I have my next MRI scan scheduled for the end of this month, actually. And, given Dr. B’s certainty in his response, I’m not quite sure what I’ll do even after I hear Dr. M’s response about the PET scan.

At the end of the day, my neurologist spent two hours with me, and for the third time now, I have been the last person in the office when they close. She is someone who really cares about her patients. She recorded today’s appointment in part of a study a company is doing with her practice to create better physician-patient interaction and discharge plans. The appointment resulted in the decision to change taking the 250mg of regular Keppra that I take at night, to taking 250mg of extended release Keppra in the morning. This makes sense, because the four seizures I have had this semester have all taken place during the day. She also recommended that I have another EEG, but I passed. I’ve had three or four EEGs over the past five years, and I always end up spending five days in the hospital for nothing.

I’m going to take the free time I have outside of doctor’s appointments during the rest of this month off to curl up with a few good books, and to enjoy all that Netflix has to offer.

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 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.

A Piece of Paper

I came across a folded up piece of paper today while cleaning out a drawer in my room. This wasn’t just any piece of paper..it was the piece of paper. The piece of paper that kickstarted my hunt for a neurosurgeon. The piece of paper divided into four equal quadrants responsible for different categories of questions for doctors.

I wrote on this piece of paper during my first consult with a neurosurgeon sometime in the late spring or early summer of 2012 when I was first told that my brain tumor had grown. I’m almost coming up on two years since that day. It feels like a lifetime ago.

Excerpts from the piece of paper read:

  • “Stable by no means”
  • “Watch & wait -> chemo & radiation down the road”
  • “Average 10-12 years from diagnosis to grade 3”
  • “Take the risks today for tomorrow’s benefits”
  • “Risks will never be = to or less than they are today”
  • “Time is on our side”

I feel the need to keep and preserve this piece of paper because one day it will be ancient relic..a thing of the past. I’ve gotten rid of all other hospital based items including scrubs, socks, and t-shirts besides a couple of bracelets from monumental surgeries.

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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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.