Sophomore Year In Review

This year completely flew by! I can’t believe that I’m halfway done with my undergraduate career. I feel like the first semester just wrapped up. If I could, I would rewind to the end of the first semester and start over from there again. I’m a nerd..I absolutely love school, and would stay here forever if I could. I would probably attend the biomedical, business, engineering, and marketing classes just to see what they were like if they didn’t conflict with my schedule. Well, we know that I would attend the biomedical.

But school isn’t just learning, though, it’s the social opportunities that come with it too. I had a fantastic job working on campus this year and got to meet to many incredible people with such drive and passions that I never could have guessed that I would meet coming into the year. While I won’t be returning to work there next year, I don’t regret working there for a minute, and I found my roommate for this summer and next year because of that job. Speaking of that roommate, we both moved into our new apartment yesterday, and it’s awesome.

I wrapped up sophomore year with a 4.0, and made the Dean’s List both semesters. That leaves me with a 3.9 cumulative GPA for the two years that I’ve been here. Woot woot! I TAed for a course this year as well, and really enjoyed working together with the professor and PhD student on that. I take a lot of pride in my academic work, and it is pretty obvious that I also find a lot of self-worth in my academic success. I used to derive my self-worth from being the best on the tennis court, or whatever other sports arena that I competed in as a serious athlete, but ever since my back and brain surgeries I have not been able to compete in those same ways. The classroom has since become my arena, and exams and courses have become my competitions. I of course find self worth in character traits, friendships, and other aspects of life and myself as well, but I would be wrong not to point out the obvious and glaring importance that I place on academic success.

My favorite course this year by far was one of my Child Life courses called Children Facing Health Care Challenges. While it was only a brief overview of psychosocial assessments of hospitalized and chronically ill children, and techniques to support their coping, I learned a lot, and have another course with the same professor in the fall. As someone who considers themself to be chronically ill, I thought that all of the information was spot on, and that the professor did an excellent job delivering the information, even though the course was taught online.

There was one course, though, Early Childhood Intervention, that I struggled with this year for a reason that surprised me. While the course focused on an age group (0-3) unrelated to any treatment or medical procedures that I could recall or even had any health problems with at the time, a particular unit of the class focused on trauma, and I continuously experienced flashbacks from my surgery and other hospital visits as we went into detail about PTSD and how trauma can effect children down the road. I think that the professor noticed, because she came up to me after several classes to ask me mundane questions, as if she was waiting for me to disclose that I was struggling to her. That was really difficult for me, because I hadn’t had any flashbacks in what felt like months, even though it had unfortunately only been weeks, and then I had to sit there and have them multiple times a week.

I am now starting to get my thoughts together for my honors thesis, and that is very exciting. It will be on the topic of end of life for school-aged children and adolescents. I have my committee fully formed, and now it’s time to get in the research zone. I’ll be spending much of my free time reading to get a jump on that so that I can defend this spring as a junior and get it out of the way instead of stressing over it as a senior. I have quite a few friends who are seniors who are preparing to defend this spring as well, so we can research, drink coffee, and complain together.

In other news, tomorrow will be my first day volunteering in the Child Life department at a children’s hospital out here, and I am ecstatic! I am spending the summer out here in Arizona, and I have been warned that I just might melt. I was excited that my scrub pants were black, ie no awkward sweat stains when I take the bus to get there, but then I was told that it gets so hot that no color is truly safe from sweat stains, which was terrifying to hear. Regardless, wearing scrubs feels like wearing your pajamas to work, and I am all about that.

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Are you feeling better today?

Friends, professors, and coworkers have continued to be incredibly understanding of my temporary decrease in focus and energy levels. I missed several work meetings to nap the week before last, and everyone was completely ok with it. Those who weren’t aware of my brain tumor and seizure history at work were alarmed and skittish when I casually mentioned to them that I wasn’t making the meetings because I was trying a new medication and needed to rest. They then started asking me if I was feeling better the next day, the day after that, and the day after that, and eventually I just told them that I was feeling ok. Over the past seven or so years, I’ve come to learn you can’t expect those who haven’t dealt with a chronic condition before to understand that you don’t suddenly wake up the next day feeling better, as nice as that would be for them to understand. Regardless, all of my coworkers truly do care, and I’ve heard so many horrible stories from other college students with invisible illnesses about professors and coworkers treating them like absolute crap when they’re feeling sick or changing medications, so I truly am lucky to be in such considerate company. I’d also say that I am either gaining some of my energy back, or that I’m getting a little bit more used to the fatigue after the past three weeks of Zonegran, because this past week didn’t feel as bad as the first two.

The last two Zonegran side effects standing appear to be limited battery life and nausea. They pose the expected problems…

Problem: I still want to go back to sleep after just one class (way more than just a regular college student, I swear)

Solution: drink a chai tea with two shots of espresso as just the right combination to stay alert without getting jittery

Problem: getting everything I need to get done without falling asleep

Solution: plan the entire day out ahead of time, literally hour by hour, in order to spread energy levels accordingly, and allot time for some tasks to take place the next day if needed

Problem: the preschoolers I work with on campus on Tuesday and Thursday afternoons use up half of the day’s energy

Solution: hang out with the kids sitting in the sandbox instead of the cops and robbers lovers when it’s time to play outside

Problem: still relatively nauseous 24/7

Solution: always have ginger tea in my backpack so that I can drink some wherever I am on/off campus, whenever

Problem: decreased appetite re: nausea + in general

Solution: still working on it (/also sad because I love eating everything, all of the time). Your suggestions are welcomed.

bdday meme

Fun fact: it was brought to my attention this week that I was so out of it when I scheduled my six-week check-in with Dr. Z that I scheduled it for the morning of my 20th birthday at the end of the month. Cool.

It’s kind of like having the flu all of the time

The usual extreme fatigue, nausea, and bit of dizziness have made their presence known. Mood swings made a few surprise guest appearances as well. The last time I checked, working on statistics homework doesn’t normally make people want to cry. An acute episode of confusion visited one afternoon as well, where I had absolutely no idea where I was on campus. I exited the same building that I leave after a class twice a week, and have been for the past two and a half months having no idea where on Earth I was.

It felt like a scene out of a movie almost in slow motion, and after standing there in a foggy daze of looking back and forth and checking my phone to see if I went somewhere for an appointment, etc., I remembered where I was. Overall, nothing out of the ordinary or unexpected that won’t level off with time has happened since starting the new meds. The biggest nuisance is the need for naps in-between classes/meetings. I emphasize need, because there is no choice. Without taking the time to come back to my room and snooze there’s just no way that I’m able to stay awake because of how much the meds knock me out. Even keeping my eyes open while walking and riding my bike has been difficult at times over the past week and a half. If I’m walking with friends, I’ll give my eyes a little break and close them for a few moments to get some extra rest. I’m serious. Regardless of these short-term symptoms with any seizure medication, at least with those that I’ve had experience with, the immediate side effects are always the most intense. I am completely willing to give this medication a fully adjusted chance of another three or four months to see if it’s able to bring my numbers down. I’ve had a ridiculous amount of seizures this semester currently totaling up to 10 as opposed to only 4 from last semester. I have a six-week check-up with Dr. Z in another month to discuss how this medication regimen is going for me as well.

These side effects have made attending classes very, very difficult to stay awake through, but I haven’t missed a single one yet. I’ve trudged through them, coffee in hand. Some days all I think about is how much I want to be in bed sleeping, and then other days I think about how grateful I am to be sitting there and able to be taking notes with my right hand thanks to these seizure meds.

I had two seizures over the two weeks, and .5mg of a Klonopin wafer knocked them out both times, and much quicker than 250mg of Keppra had in the past. There was typically a 10-15 minute waiting period before I felt that the Keppra had a full effect on calming the seizure down, but I felt a difference within five minutes with the wafer because it dissolves into the bloodstream right away.

A week ago was the first day in 7.5 years that some form of Keppra didn’t enter my body. That’s nuts! I haven’t noticed any difference without Keppra in my system over the past week, but I figure that it’s hard to notice what symptoms are missing when new ones are being added right now. Eliminating Keppra from my list of medications means no more spells of anger when taking extra pills for breakthrough seizures, and I am definitely a fan of that.

I’ve been walking around and sipping from a giant water bottle full of ginger tea bags which helps with the nausea. I forgot what this was going to be like. It’s hard. It’s kind of like having the flu all of the time. But it’ll be worth it.

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?

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.

Blackout or Backout

A common phrase for students at my school when the football team dons the all black uniform against opponents is, blackout or backout. Today, I backed out of an elevator and blackout on the floor outside of my dorm room.

I’ve had a bad cold for a couple of days now, and I went to bed last night at 9pm. My entire body was so achy that the water in the shower almost hurt. I woke up at 8am this morning, threw on a hat to cover up my messy hair, and headed downstairs to get some food from the dining hall before climbing back in bed. As I walked down the hall towards the elevator, I realized that my body was still incredibly weak and that it would be important for me to get back in bed as soon as I had finished eating. I got in the elevator on the 5th floor, my floor, and the elevator made two stops, on the 4th and 3rd floor. By the time the elevator reached the fourth floor, my vision had started to cut out, and everything went black by the 3rd floor. The next thing I knew I was on the first floor outside of the elevator and on my back, and one of the maintenance workers was standing over me and asking how many fingers he was holding up (3). He called for the campus security to come, and they did. The EMS came, checked my pulse ox, EKG, and then advised me to go to the hospital to get an iv line for some fluids.

What bothers me most is that not one of the three other people in that elevator helped me. Not one stayed or called anyone to help me. I was left alone on the ground for what was probably was not very long, I mean, it’s pretty easy to spot a body laying on the ground, but come on..you’re supposed to help someone when they’re in need of help. Sheesh. Today’s experience was also an excellent example of the importance of patient and caregiver advocacy. A friend drove me to the health services center on campus, and after waiting for about a half hour, she noticed that several students had been admitted before me, even though they had arrived far afterwards. My friend took it upon herself to ask where we were on the docket, and she soon found out that they had forgotten to enter me in the system. So, pager number 29 that I had been holding on to was more like pager number twenty-nothing. My friend then strongly asked if we could be seen as the next patient, as we had waited and, as far as we were concerned, making sure that I didn’t pass out again was more of an emergency situation than cutting someone’s leg cast off. I was too weak and exhausted to ask many questions, challenge any tests or doctors, etc. but she wasn’t. She asked if a needle was sterile because it had been laid down on a table before entering my finger, she asked if the second EKG of the day was really necessary, and she made sure that there was a bottle of Gatorade in my hand all day. What would the world do without patient advocates?

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: 

Haircuts

The harsh whirr making its way around the sides of my head echoes in my ears.  It sounds just like the drill they used during my surgery. The razor brushes up against my plates and screws. It makes its way up and over the bumps as if this is a motocross race, surmounting one ramp after another. The noise paralyzes me. it’s ok, though, because I’m used to it now. It has been almost two years since my brain surgery, and I still have flashbacks. They used to last for what felt like hours, but now they are only momentary. These flashbacks serve as a reminder of how far I have come, as well as how far I still have to go. I do not expect these flashbacks to ever fully dissipate, and that is ok. Of all of the things I have hope for, this is not one of them. I hope to fully regain my working memory capabilities. To regain all of my old vocabulary. To regain all strength on my right side completely, all of the time. These flashbacks keep me grounded in a sense. They are a way of telling me that the hardest part of my life is over.

I forget about the sound until the next time.

 

 

August #BTSM Chat – Survivorship Plans

August’s #BTSM Chat talked about making a map for survivorship mode: a guide to the what’s next and how to’s of life after treatment. As far as Liz and I could tell through our research, there is no standardized survivorship plan for brain tumor patients. The chat for the month of August also announced some new and exciting things for #BTSM – we created a #BTSM Twitter chat account, and a #BTSM Community website is in the works. Keep checking the site for updates!

T1: Do you consider yourself or your friend/family member a survivor at this point?

  • How do you define survivor?

T2: How many of you talked with your doctor to determine a survivorship plan after diagnosis/treatment?

  • Did you know that there’s such a thing as a SURVIVORSHIP PLAN?
  • What should a brain tumor survivorship plan include?

T3: What kind of medical related things do you want survivors to know to follow up with after treatment has ended?

  • What are some non-medical related things that you think brain tumor survivors need TO DO after treatment ends?

T4 (bonus round): What ideas can you contribute to a survivorship plan for your specific tumor type/locations? 

Screen Shot 2014-08-12 at 8.34.47 PM

Two resources for creating generalized survivorship plans that Liz and I came across were The Livestrong Care Plan and Journey Forward. Let us know what you have done to create your survivorship plan, and tune in on September 7th for the next #BTSM chat.

July #BTSM Chat – Addressing Patient Symptoms and Clinical Trials with The National Brain Tumor Society

#BTSM chats teamed up with The National Brain Tumor Society (NBTS) for July’s chat to discuss addressing patient symptoms and clinical trials, and, we even made an awesome, special logo for the event:

july chat logo

NBTS made a really cool storyboard to recap highlights of the chat here if you’re interested in seeing more of the full conversation. I was off the grid and in Montana when this month’s chat took place, and The Liz Army did a fantastic job moderating. NBTS also launched a new, and brief survey (that will take less than a minute to complete) to gather patient/caregiver perspectives which I encourage you to take here. When asked about the quantity of benign vs. malignant brain tumor clinical trials, NBTS responded that: “Clinical trials can be for both malignant and benign…often more in malignant space, though. early phase clinical trials evaluate safety and identify evidence of biological drug activity, such as tumor shrinkage. later phase efficacy trials commonly study drug clinical benefit, eg increased survival or improvement in symptoms.”

  • Q1: [for NBTS] What does the term “clinical trial endpoints” mean?

– A1: “Endpoints are outcome measures that allow us to decide whether a treatment provides clinical benefit” – NBTS

  • Q2 [for everyone]: What are the top symptoms that you think should be addressed in brain tumor drug development?

– A consensus answer was a drug that could simultaneously shrink tumors while easing seizure and headache symptoms would be ideal, as well as one that does not cause tremors, which Temodar (a commonly used oral chemo pill for brain tumors) does. In a perfect world, this drug would also not cause a change in appetite and minimize the need for steroids, eliminating moon face.

  • Q3: Have you (or your loved one) taken part in a clinical trial–if not, what has prevented you from taking part in a clinical trial?

– Many participants responded that a clinical trial was never discussed, nor offered to them.

  • Q4: If you DID participate in a brain tumor clinical trial, how did you find out about it?

– One of the better resources to search by tumor type is clinicaltrial.gov if you’re interested in finding one

  • Q5: If you had the opportunity to help give input on the development of brain tumor clinical trials, would that be of interest?

NBTS is currently working on their own clinical trial finder (nice!), where people will be able to search by tumor-type. In the meantime, the Alliance for Clinical Trials In Oncology is a way for patients to get involved in developing clinical trials that matter. Those involved can:

  • Attend and participate in scientific meetings
  • Review study concepts and protocols
  • Assist in designing study accrual strategies
  • Develop plain language study result summaries
  • Make presentations to interested groups of scientists and clinicians

Tune in for the next #BTSM chat taking place on August 3rd, same time, same place!