Conversations that matter

This year I was fortunate enough to be asked to moderate a panel at Stanford Medicine X. The panel was called “Ah-Ha! moments in mental health and chronic disease management,” and I used the moment to shine a light on the similarities between patient communities regardless of age and diagnosis. The room for our panel was packed, and had standing room only. Each of the panelists – Mark Freeman, Danielle Edges, Ally Ferlito, and Sarah Kucharski – nailed their responses to questions and so clearly articulated the importance of mental health both in their own lives and in the lives of others within their patient communities.

standing-room

We saved time for a few questions at the end, and Christopher Snider pulled one from the live Twitter audience who was tuning in. We also had a physician remind the room how there is simply a lack of training related to patient mental health. His reminder didn’t present as an attack on the panel, but rather as words of empathy and a pleading apology to panelists after hearing how systems have failed and continue to fail some of them. As a follow up to his statement, I reminded everyone in the room how there were several Student Leadership Program attendees present for this session. Hopefully these students – future pharmacists, physicians, and researchers, took away a better understanding of the patient experience. Those attending the conference within the Student Leadership Program (SLP) blossomed, many receiving offers for funding their venture ideas, connecting with physicians for mentorship, and successfully networking amongst other guests. As an SLP Advisor, I felt like a proud parent! It was an honor to help coordinate the SLP program, and to improve upon accessibility efforts. It’s exciting to know that I was one of the youngest people there with very few undergraduate students, yet still tasked with the responsibility and respected for expertise, whether that be as a patient or student. And to think that two years ago I was apprehensive about applying to the program. This just shows that age, degrees, and professional qualifications cannot be substituted for life experience.

Just like last year, I met more people than I can count. But, out of everyone, Elizabeth Jameson stood out as the clear frontrunner as the person who I was supposed to meet. She was a part of the ePatient program as well, and I was immediately drawn to her. Liz was too. elizabethI think that we all had an instant connection. I found one of Elizabeth’s cards on the ground, and can swear that I have come across her artwork somewhere else before. While my admiration of her work certainly opened up the conversation, I believe that we were meant to meet for other reasons. You can see some of her pieces here. Elizabeth specializes in the intersection of art and science, and has secondary progressive Multiple Sclerosis. She and her artist assistant Catherine Monahon have created some incredible pieces over the years, all of which center around her own brain scans, similar to the ones that I have created in the past. I think that Elizabeth’s artwork speaks to the power of the patient voice, and also the reclaiming of one’s condition in a world so focused on fixing and medicating upon diagnosis. Her work is featured in permanent art collections at places like the National Institutes of Health, Stanford University, Yale University, and the Center for Brain Science at Harvard University, and I can only hope that one day we can collaborate on a piece of artwork together.

Friends and conversations had at 2015’s conference have translated into opportunities for 2016-2017, too. I’ll post that update later this month.

Disclosure: This post is one of several as a part of the Stanford Medicine X ePatient Scholar Program – Engagement Track, for which I receive financial support for travel, lodging, and registration fees for this conference. The views expressed in this post are my own.

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!

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.

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: 

February #BTSM Chat – Scanxiety

This month’s #btsm (brain tumor social media) chat theme was scanxiety. After some issues on the tchat.io/rooms/btsm server, we switched over to tweetchat/room/btsm for the night to better view the live chat stream.

Scanxiety. Noun. [skan-zi-etee]

1. Uneasiness waiting for ones scans after cancer treatment

  • T1: How does your scanxiety manifest?

– Has your scanxiety always presented in the same fashion, or has it changed over time?

  • T2: What helps distract you leading up to scans, and waiting to hear back about results?

We will be back in business on 3/2 for March’s #btsm chat. Please, join us!

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.

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. 

Serial Imaging – 4 month MRIs

The visit is the same every time. I head down to ground level and down a fluorescent tunnel you’d usually see at the zoo. I am greeted by the same XXL scrubs. I enter the same empty waiting room. Only twice have there ever been other patients inside. The same desk attendant asks if we know each other from somewhere and I explain that I’ve been there dozens of times before. She remembers and smiles to herself.

I am led to the same 3T MRI chamber. There is a little red chair in the corner for parents to sit if their child needs extra comfort inside the room. The same perfect ear plugs are offered – I use the same brand for test taking. Then, there’s the face cage. It snaps on easily, but not until giving a bit of resistance with its sturdy frame. Sponges are placed through the sides to keep my head locked in. Lulling waves wash over me as the table slides back into the machine. The machine gives off noises louder than Miley Cyrus and her wrecking ball on a construction site. I like the consistency.

I usually fall asleep in the machine quickly but this time was different. I stayed awake the entire time which was a shame. I’m not claustrophobic, but I prefer to sleep through the scans and not have the memory. Another scan added to the collection of dozens.

I collected two copies of the scan afterwards as always. I popped the disc into my computer and everything looked ok. Not bad by any means, just odd. There weren’t any bright white spots, but it just seemed like there was more grey hanging out in the cavity. My last MRI was crystal clear, which is why this one looked kind of strange. Although I see some of the same markers between these two scans, it is very difficult to have two exact images for comparison, especially when they are from two different machines. Not to mention that I’m not a doctor hahah. Who knows, the gray twirls could simply be scar tissue.

The package should arrive at UCSF on Thursday. I should get the results back within the next two weeks.