A surprise worth sharing

Being here, senior year, is a surprise worth sharing.

I thought maybe I would make it through the first, or second year of college. Then I would have a recurrence, go through treatment again, and die. It wasn’t just a fear; it was statistical and founded in research. Brain tumors are the number one killer of those under the age of 19 and with my tumor type a recurrence within the first two year isn’t all that uncommon. Now at 21, I am graduating college. I have not had a recurrence, and I am stable. My next scan is coming up, but I’m not even worried. In fact, I forgot that I even needed to make the appointment. Whatever happened to scanxiety?

I never thought that I would make it to this point. When I entered my freshman year of college it had been less than a year since my awake-craniotomy. I was still having flashbacks to surgery on nearly a daily basis. My life was living in fear moment to moment, wondering when the next seizure would hit, when I would be told to pack up and come home to live with my parents because I couldn’t safely live on my own anymore. I thought that I would go to school for as long as I could, learn as much as I could, and just try to experience as much as possible for as long as possible.

This didn’t really hit me until I defended my thesis because a thesis is something that people plan for. They start their research early, they select committee members, and they write for years. I did so, but I didn’t expect to actually follow the plan through to the end, because I didn’t think that I would get the chance to. The night before I defended I realized how shocked I was to be in this position. It was so…satisfying. The same professor I met my shell-shocked freshman year, back when I couldn’t sit through a film in class because the sound was too loud, was the same committee member that I met with every week this semester to put the finishing touches on my thesis, and the same committee member who saw me blossom into someone who believed in the possibility of a future.

For so long I just didn’t think that one would come. I was so afraid of tomorrow, of next week, next month, the next scan, that when I finally started being able to plan years in advance it seemed beyond my wildest imagination that I would actually get there.

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.

Let’s Try Again

After nearly two years of living in Arizona, it was finally time to establish a local neurologist. My parents are moving to the Southwest and out of Michigan, therefore I won’t be able to see my incredible neurologist in Michigan any longer. Dr. Z is a neuro oncologist from the Barrow Neurological Institute out here, and I am very pleased with her after this morning’s appointment. If this were Yelp, I would rate her a “10/10 would recommend.”

Naturally, I did some research on her ahead of time. A few papers and research studies popped up per usual. What surprised me was that her social media accounts came up, too. All of the sudden I found myself looking at her tweets and Instagram posts about the marathons she has ran (woah!). At first, I thought it was strange and almost felt uncomfortable. But then I realized that I liked knowing this information about her. Knowing that Dr. Z has hobbies and a “real life” outside of her practice was comforting, and reminded me that doctors are people too. While it might be weird for her to know that I know all of this outside information about her, it makes me feel like I know her a little bit better other than just my doctor with a name tag. It also probably makes me a little bit creepy, though. Oops. No shame.

I felt more nervous for this appointment than going on a first date. In most previous first appointments that I’ve had over the years I have to reexplain my entire medical history starting from the beginning. Dr. Z had already read my case file though and knew my story for the most part, which was a nice surprise. She was affirming and honest throughout the appointment, while also hopeful and kind. Dr. Z also has a family connection to epilepsy because both her sister and mother have epilepsy. In my mind, this makes her work all the more meaningful because she brings an extra sense of empathy to the table that truly understands the toll that these medications and this condition can have on a person and family.

While I only had 4 seizures over a four month timespan during my first semester this year, it has not even been three semesters since, and I have had 7 seizures. WIth that being said, we decided to change my medications and see if we can cut that number down. The new plan after today’s appointment and within two weeks with stabilized medication adjustments is: Morning – 200mg Vimpat, Afternoon – 200mg Vimpat, Evening – 100mg Vimpat with 200mg Zonegran, and Breakthrough –  .5 to 1mg of Klonopin wafer. I am extremely grateful that my new insurance plan covers both new medications. Dr. Z mentioned the possibility of surgery to sever the connections causing the seizures somewhere down the line as a big-picture type of view, but that’s something that I don’t think I would ever consider unless I had exhausted all types of seizure medications and other treatment options ever.

Processed with VSCOcam with f2 preset

I know that I said before that I was done with scans for a little while, and I still believe that. Dr. Z thought that moving on up to an every 6 months scan regimen would be smart, and I conceded with her there. Thus, my next MRI will be in June. I feel comfortable having one over the summer, while also knowing that I’ll only have two (hopefully) scans a year now. When I brought up my fear of recurrence, Dr. Z states that “Of all of the tumors to have, this isn’t a terrible one.” That actually made me smirk. It was something that I had been wanting to hear but no one would say it. This tumor isn’t completely devastating, but it also isn’t nothing. She said that there are some people whose cases you look at, and you can tell them that this is what they’re going to die of. That isn’t definitively the case with me, but it also isn’t something to completely take off the table somewhere down the road. This case and tumor are manageable, and I can do manageable. Hearing those words allows me to breathe a bit easier. When she took a look at my MRI, she pointed out a little section of tumor that still remained, but that had not really changed since my surgery 2.5 years ago, which was good. She said that keeping an eye on my noggin for the next 5, 10, and 15 years are important. The farther out I get from this surgery without recurrence, the less likely it will be for a recurrence to happen.

So, let’s try again. Let’s try to go four months seizure-free again, just like after surgery.

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: 

Sophomore Year

My second year of college is officially underway. I am still living on campus in what is considered upperclassmen dorms. I made the decision to stay on campus in case a new health concern arose, as well as to remain in a relatively quiet environment. I have to admit, I do semi-regret the decision. Many of my friends live in nearby apartment complexes and I miss not seeing them as much. However, my single room is quiet and peaceful all of the time, so I am definitely not complaining about my living conditions themselves, just not waking up to my buddies in the morning. The new kids in town, freshmen, have never been so obvious, walking around huddled together like little ducklings with their gold lanyards swinging back and forth. They even managed to start a fire outside one of the dorms last week (WHY?!).

Surprise: I changed my major from Elementary and Special Education to Family and Human Development with a focus in Child Life. I thought that I wanted to teach within hospitals, but, I no longer see myself leading a classroom full of students anymore. My teacher’s college courses have made me realize that while I do find education fascinating, I want to know why children think the way they think, how their families function, and what outside of the classroom makes them the student that they have become. Best explained in one of my McGraw Hill textbooks, “Child life specialists work with children and their families when the child needs to be hospitalized. They monitor the child’s activities, seek to reduce the child’s stress, and help the child to cope and to enjoy the hospital experience as much as possible. Child life specialists may provide parent education and develop individualized treatment plans based on an assessment of the child’s development, temperament, medical plan, and available social supports.” Do I think that I would have learned about or been interested in this career had I not spent so much time in the hospital? Probably not. Do I think that this career best suits me? Absolutely.

Announcement: I also have a job on campus this year! I am the Social Media Chair for an organization that focuses on community service, community outreach, social entrepreneurship, innovation, and student-driven social change. We work as connectors to other organizations and resources on campus as well. The job keeps me busy, which I like. I was weary about disclosing my medical conditions at first, but then I noticed that a co-worker was wearing a medical alert bracelet (for diabetes), and we bonded over shared stories and experiences of being the “sick kid” at school. Another co-worker missed a day with a massive migraine, and we bonded over headache struggles. I wondered if I should disclose my various conditions to the faculty advisor, but waited a few weeks until doing so. She was very supportive, and even shared that her brother-in-law had passed away from GBM. It wasn’t one of those cancer comparison stories where a person tells you about someone they knew with the same condition who died because they were so uncomfortable that they didn’t know what else to say. Instead, it was a way of her reaching out and saying hey, I know that this is hard, and I will do whatever I have to do to help you. I really appreciated that gesture, as well as how co-workers have checked in with me during events to see if the noise level is too loud, or to ask if I need to take a quiet break somewhere. Working with this team of tremendously hard working, dedicated, and driven students has been an incredible experience so far, and I can’t wait to see what the rest of the year brings for our organization.

Exercise plan: I’ve been really into swimming since I returned from First Descents this summer, but now that I’m back on campus I haven’t been getting into the pool as much. I’ve been going to the gym with one of the co-workers that I mentioned above, and I can’t tell you enough how helpful it is to have someone else there with you to cheer you on. I also signed up for a yoga class this fall, because why not? I had to get a doctor’s note to prove to the instructor that I wouldn’t pass out and die in the middle of class once I disclosed my medical history to him. I’m not sure that the note was something that I legally had to provide for him, but it wasn’t too difficult to acquire, so I did it anyways. To my surprise, I was actually pretty dizzy for most of the first class, 99.9% likely due to all of the head movement. The class will carve out a set schedule for exercise during my week, as well as strengthen my back.

Not a surprise: Once again, there was an awkward situation when it came to setting up disability accommodations with a professor. Last semester’s incident was horrendous, but this situation was more of an kind-hearted accident. I had reminded a professor to read off the statement provided by the disability resource center that requests another student in the class to scribe and submit their notes to the DRC for $25 per credit hour – the student essentially gets paid to submit a copy of their notes, something that they are already doing for the class anyways. He then added an extra slide to the lesson’s PowerPoint and made the announcement mid-class where he had inserted the slide so that he wouldn’t forget. Just as class ended, he looked at me, asked if he had asked about a notetaker, re-asked the class, and then asked me if he did the announcement correctly. This professor was very nice about it all and meant very well, he just didn’t realize that he had singled me out. The purpose of announcing that a notetaker is needed is to provide an accommodation for an anonymous student in enrolled in the course, not to identify them to the entire class. This accommodation serves as a backup plan for days when I have a seizure, or when my hand/arm is too weak/heavy to take notes. Having an extra copy of notes to refer to also helps in case I wasn’t able to write down a point fast enough. As I move farther and farther away from my surgery, I find myself feeling the need to justify any accommodation or “special treatment” that I receive more and more, even though that I don’t have to. This feelings stems from the notion that people who don’t look “sick” don’t need help. But, we still do.

Check back here in another week for a TWO year post-cranio reflection.

First Descents OBX 2014

So, what is First Descents (FD)? “First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same.” It’s also a place where you get to know people by nicknames like Sir Apple and Meow Mix instead of their real names. I heard about FD through friends a few years ago, and finally decided to apply last Fall. FD offers three outdoor adventure programs: whitewater kayaking, rock climbing and surfing. I picked the surfing program in the Outer Banks of North Carolina because it felt like the best fit for my compromised lower back, and I’ve always found water to be relaxing.

My first full day at First Descents commenced at 7:45am when we all woke up to freshly brewed coffee, fruit, oatmeal, and a selection of cereal all prepared by two incredible chefs and program volunteers. Unfortunately, the waves were too intense for us newbies to surf that day. We all made our way to the Farm Dog Surf School and got outfitted with wetsuits so that we could get started with our training bright and early the next morning. The Farmdog Surf School instructors were quite possibly even more excited to teach us than we were to learn how to surf! Their patience and enthusiasm were a huge part of what made this week so incredible. I fell off my board time and time again, and someone was always right there to help me paddle back out, or get out of the water for a break. The surf crew even came over for a dinner a few night so that we could get to know them better.

We had a campfire on the beach each evening, and one of the discussion questions posed was: What are you hoping to get out of this week? Responses ranged from taking a break from work and having a vacation, to rediscovering passions and forming new identities. For me, this week was about learning how to exercise again and actually enjoy it, rather than being afraid of what might happen, or how my body might feel. FD proved to me that my brain tumor isn’t holding me back physically anymore. I was able to surf and get beat up by the water all week without any seizures, migraines, or trouble balancing. Even though I had been told that it was ok for me to partake in exercise again, I still wasn’t sure if I could do it, and now I am. The only brain tumor related side effect that I felt at FD was fatigue related. I took many naps on the beach and at the house, and I received an award for honoring my health needs – Where else could I have won an award for napping?

Participants of FD programs don’t have to worry about anything the entire week. There was food already prepared when we woke up each morning, a yoga instructor to greet us at the beach, surfboards already laid out for us, and snacks always made available. This worry-free and laid back atmosphere at FD was conducive to casual yet intimate conversations. Getting to know the 13 other program participants and 8 staffers was an absolutely wonderful experience. While participants ranged from a year younger to 20 years older than I, age didn’t make much of a difference. We were all young adults looking for a week to catalyze believing in ourselves outside of our comfort zones, and we found what we were looking for.

This week reminded my body that it’s ok to be sore. I had forgotten what it felt like to be sore. Over the course of the past four years I transitioned from an extremely active and highly competitive person to someone living a sedentary lifestyle after my surgeries. While I am no longer able to participate in all of the physical activities that I once could, I can still try. FD reminded me that I should at least try. While my brain has recovered remarkably from its surgery, my back still has many limitations after spinal surgery. A week spent learning to surf has translated into two days of bed rest and reverting to sitting on a chair in the shower because I don’t feel stable enough standing up on my own. My back felt fairly decent throughout the week, but I’m really feeling the strain now that the adrenaline from this week has started to die down. I’m sure that there aren’t any new injuries, but I think that lifting the surfboard caused some serious strain and stiffness for my lower back. Regardless, the joy and state of mind that I felt all week is worth the pain. Anyone can lay in a hospital bed for weeks on end. Not everyone can push themselves to challenge their medical conditions and try something new, and First Descents facilitates that adventure.

fd group photo