On Finding Meaning in my Cancer Journey

Throughout my radiation treatments I took some time to do some writing.  Now that I am starting to get some energy back and feel myself again, I wanted to post what I had written.  I wrote the following post about a month ago at the half-way point of my radiation treatments:

On New Year’s Day, long before I knew where my medical journey would lead me, I took a relaxing walk around Walden Pond with my sister.  Along the trail that surrounds the pond sits a pile of stones next to the spot where Henry David Thoreau’s house once stood.  On a wooden signboard one of Thoreau’s most famous quotes is written:  “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived.”  My sister and I took a few pictures of the picturesque lake as the sun began to set, and continued walking.

A few weeks later, I met with my Rabbi from when I was younger.  I can’t remember exactly, but it must have been at least 8 years since I had last seen him.  I grew up with this man, and it was an amazing flashback to my childhood listening to his sermons.  On the same day I had my brain surgery in 2004, my Rabbi had back surgery.  The nurses and doctors told him that he could not leave his bed, but he insisted to see me in the ICU.  It is one of the few moments in the ICU that I remember following my surgery.  As we sat together over coffee, we caught up on lost time, but also focused a lot on my present situation.  He encouraged me to take the time to find meaning in all of this…to find meaning in my diagnosis…my uncertain prognosis.

Over the past couple of months I have thought about my Rabbi’s question from time to time.  What meaning can I find from my cancer recurrence?  What meaning can be derived from myself and those around me having to live in a constant state of uncertainty?  I had already gone through this thought process before.  Over the many years following my original diagnosis and recovery, I had reflected back on my experience, finding a way to shape my hardships into a drive and ambition to make a lasting positive difference for others.  I had felt like I had been given a second chance at life, and I felt a responsibility to make the most out of it…to make the greatest impact possible.

This mindset helped me reconcile my struggles as well as push myself to accomplish things I would not have thought were possible back in 2004.  Looking back on my experience now, I am not sure if I would say I was given a second chance, or that the medical care I am receiving today is my third chance at life.  I do not think that my journey has been split up by these moments where I have been faced with these ultimatums in my life’s course…forks in the road to keep going or stop.  Rather, I see my struggle with cancer as a part of my life and who I am.  Cancer does not define me, but the experience…the journey…has shaped my character.

Already half-way through proton therapy, I have started to feel some sense of routine in my treatment.  I now have the luxury of time to begin thinking about my long-term plans.  What do I want to do during my year of chemo in Boston?  What do I want to do as a career? As these thoughts start spiraling, I get energized as if the sky is the limit.  But like a plane stalling in the sky, these highs have often resulted in frustration over the uncertainty in my long-term prognosis.  I have been blessed by the support of so many people, opportunities, and experiences.  All of which have helped me get to where I am today.  I continue to feel this urge…this responsibility…to take what has been given to me and direct that towards making a positive impact on others throughout my life.

As a 23 year old my mind is naturally thinking about graduate school and possible career tracks.  I think about what path will help me reach the impact I want to leave on this world.  As I think about these possibilities, I am quickly reminded by my medical situation…the uncertainty in my prognosis.  When this happens, I feel powerless…drowned by the weight of not knowing whether or not I can take all that has been offered to me, and transform it into something good for others.

One night, to get away from all of this stress, I turned on the film The Dead Poet’s Society (…I know, I couldn’t believe either that I hadn’t seen it until now).  On the front page of the Society’s book of poetry is Thoreau’s quote…the same one I saw on New Year’s Day.  Unexpectedly, I was overcome with emotion…tears falling down my face.  The mere observer would have thought I must really like the film…but it was more than that.  It made me think about Thoreau’s quote, particularly the words, “I wished to live deliberately.”  And that was it…the meaning I was trying to search for.

Since my original surgery, I have spent the past 11 years, and now the past few weeks, trying to create meaning from my journey with cancer.  True meaning though cannot be created at the end of the journey, but must be experienced along the way.  So what is the meaning I have been searching for in my experience with brain cancer?  To live deliberately…to live a life of vulnerability and authenticity.  People my age usually do not have to deal with the concept of their own mortality…that is often something encountered later in life.  What questions does facing your own mortality bring up?  For me, it has been how I want to live my life.  When the time comes however many years down the road when I meet my own mortality, I want to, as Thoreau said, know that I had lived.

Experiencing cancer, particularly the uncertainty it brings, has opened my eyes to how precious life is.  I still feel the same drive to turn my experience into something positive for others…but that is not the only meaning of my journey.  The meaning of my journey with brain cancer is in how I choose to live, and I choose to live deliberately, authentically…to be vulnerable.

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Radiation Complete…Gratitude and Next Steps

Everyone has been asking me how does it feel to be done with radiation…Are you excited to be done?  I don’t really know how to answer.  It’s strange.  I’m finishing the first major step of my treatment, and after 6 weeks of going in for radiation 5 days a week, I can finally move on to a different routine.  Part of me thinks I should feel like this is a momentous occasion…a milestone reached.  But I don’t feel that way.  I’m not sure if it is the fatigue from the radiation or that the past month and a half feels like it has only been a few days, but the ending of my proton treatment just feels matter of fact…the next step along this roller coaster of a journey.

That’s what I wrote last weekend before my final treatment…but despite those lingering feelings, after stepping off of the proton machine yesterday, I celebrated!  Cancer journeys can be long.  From spending half my life living with cancer, I have learned it is important to celebrate every milestone no matter how small or big it may feel.  I have learned it is important to appreciate these moments, and recognize the privilege, effort, and support that is involved with getting to these milestones.  That is why after my last proton treatment I was filled with mixed emotions:  a lot of fatigue, joy, anxiety over what’s next…but above all else, a huge sense of gratitude.

I feel immense gratitude to everyone who has made these past 6 weeks go by flawlessly.  First, I have to thank my family for continuously supporting me.  To my Dad for helping arrange the apartment in Cambridge that made the logistics for getting to my treatments incredibly easy…saving me a lot of much needed energy;  To my Mom for the delicious and constant supply of food to meet my non-stop “grazing” chemo-radiation diet as well as emotional support along the way;  To my brother and sister for always being there to chat with, hang out, and lean on; To my extended family for their continuous support, food, and chocolate;  And to all of my friends who have helped me pass the time with joy and humor.  There are too many people to thank, but if you are reading this, please know how appreciative I am for all of your support.

I feel tremendous gratitude for the entire radiation oncology team at Mass General who made this treatment possible.  The amount of people and work involved with my proton treatments is truly mind-blowing.  From my incredible radiation oncologist, nurses, and techs, to people I never even met (…including the physicists, dosimeters, and many others).  In particular, I want to thank the staff at the proton center.  Paul and Elaine for their constant kindness at the front desk even in the midst of a tornado of phone calls and organizing as well as Maryellen, my nurse, who always took the time while passing through the waiting room to check on how i was doing, reassure me that my blood counts were at normal levels, and never stopped having a smile on her face.

Finally, to my proton technician team:  Katie, Scott, Gary, and Hui!  Not only are they amazing at their jobs, but despite the long and stressful days, they always approached my treatments with incredible kindness and humor.  They treated me like a friend in a setting where it is very easy to become just another patient number.  Whether it was fights over music choices from Gary’s rock, Scott’s EDM, and Katie’s Beyonce, to Katie discovering Narwhals were a real animal from a sprint commercial song, they all went above and beyond to make the treatments go by easier while providing extremely high-quality care and concern.

Throughout all of my medical experiences over the past 11 years living with cancer, I have learned it is the people you interact with everyday during treatments who make all the difference.  It is very easy for cancer treatment to become like a factory assembly line.  The past 6 weeks could have been a monotonous routine of stressful treatments, but it was the staff I interacted with everyday who made all the difference.  Everyone at the proton center were not only amazing at their jobs, but they approached it with immense kindness and humor that made the entire process go by much easier…and for that I am truly thankful.  The past 6 weeks of radiation was only the first step, but it was an important step during my long journey of kicking this cancer’s butt.

Next Steps:

After finishing my radiation treatments I had my oncology appointment at Dana Farber.  The plan is to wait a month to have my next MRI.  During the next month I will stop all of my treatments to allow my body to recover from both the chemo and radiation.  The fatigue from the proton therapy can increase after the treatment over the next several weeks.  For younger people the fatigue usually dissipates after a few weeks, and then can oddly reemerge months later (…whereas in older patients, the fatigue can last for several months post-treatment).  The proton treatments can also cause increased brain swelling, which is why I will get the MRI in a month.  I am also stopping the chemo because the doctors have found that continuous Temodar treatment after 42 days could lead to increased toxicity and lower blood counts (a.k.a. it can hurt my immune system).

Once I get my MRI in a month, I will begin the longer-term oral chemotherapy treatments.  This will consist of 5 day periods taking the Temodar (…with 23 days in-between) at double my previous dose for at least 6 months.  The amount of time I will be on the Temodar will depend on how my body reacts to it.  I will get frequent MRIs to see if the treatment causes the tumor to shrink at all.  In addition, I will get blood drawn every week to make sure that my platelet levels are at a healthy number.  If my body can maintain healthy blood levels, and the doctors see positive results in my MRI scans, then I may continue the chemo treatment for up to 12 months.  However, if the toxicity levels build up too much, we will cut off the chemo at a certain point after 6 months.  It will all depend on how I am doing week by week.

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In the meantime though, I will enjoy the next month being treatment-free and hopefully gain some of my energy back as the weather starts to warm up!  I am incredibly grateful for all of the support that I have received.  I am blessed with immense privilege both in my medical care and all of the support I have around me…please know I do not take any of this for granted, and I am incredibly grateful.

Some of you may know that in my long periods of fatigue, I spent many hours curled up on the couch watching West Wing on Netflix.  Over the past 6 weeks I watched the entire series from start to finish…so much so that some days (particularly when I was pretty out of it) I would mix up real news for “West Wing” news.  (As a tangent) Given the amount of episodes in the series, I think West Wing is one of the best binge-watching shows out there, and I’m fairly confident that if it was required training material for political office, our government would function a lot better.  The reason I bring up West Wing though is that in the final scene (…which I watched the night before my last treatment), Jed Bartlet (the retiring president) gazes out the window of Air Force One, and is asked what he is thinking about.  He responds… “Tomorrow.”  As I write this, about to pack up my things and head back to Concord after 6 weeks of intensive radiation, it is nice to be able to think about tomorrow and all of the possibilities it holds…and for that, I am again, truly grateful.

Here are some photos from the final day of treatment:

My awesome team of techs (a.k.a. Team Narwhal!):

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Graduating with my diploma from the MGH Department of Radiation Oncology (…it will go right next to my college diploma):

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And finally, nothing like a chocolate trio dessert to wrap up the night…because as my sister knows:  “Chocolate doesn’t ask silly questions, chocolate understands.”:

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Also, here’s the video of my epic-fail while trying to ring the “end of treatment” victory bell.  Who knew you were supposed to ring it perpendicular to the hinge?  I thought I was going to break it!:  LINK

#tbt: Nyepi – the Balinese New Year…a day of self-contemplation

To all of my Balinese friends:  Selamat hari raya Nyepi!

This Saturday all of Bali will celebrate Nyepi, the Balinese new year.  After thanksgiving it is probably one of my favorite holidays.  Nyepi, also known as the “day of silence”, is 24 hours of self contemplation.  In the months leading up to Nyepi, kids in banjars (villages) construct elaborate statues called Ogoh-ogoh.  On the eve of Nyepi, Balinese around the island carry the Ogoh-ogoh in processions and subsequently burn them.  This practice is meant to cleanse the island of any bad spirits.  On the day of Nyepi, no one is allowed to leave their house, the entire island is silent, and no lights can be used.

I remember last year having the amazing opportunity to take part in this holiday.  The entire island closed down, including the airport.  As the sun began to set, no one was allowed to let any light shine outside…not even the candle-light we were using to try to cook our fish!  What resulted though was truly breathtaking.  Sitting on the stairs leading up to my neighbor’s temple, the stars across the sky shined bright.  With no light pollution from the island, the sky was an amazing spectacle…the Milky Way brightly exposed.  What struck me even more was the realization that at that moment, the entire Balinese population (over 4 million people) was cut off from the rest of the world…together with family and friends to contemplate the previous year, and begin the next year anew.

While I would love to be there in person, I wish everyone in Bali a peaceful Nyepi as the entire island steps off the grid to self-contemplate and be with family and friends…something I think we should all take more time to do and embrace.

Update – 1 week to go!

I haven’t posted any updates recently because I have been feeling pretty fatigued from the proton therapy treatments, but I wanted to check in so that everyone knew that I am doing well…and bald (a.k.a. no longer have the ridiculous monk-cut). The fatigue is a normal side-effect from the proton treatments.  I’ve been experiencing two different types.  The first type is feeling like I hit a brick wall, and suddenly having no energy.  This usually lasts for a couple of hours, but after relaxing for a bit, I’ll return to my normal self.  This “brick wall” fatigue has been occurring on and off since my 3rd week of proton treatment.  The second type of fatigue feels more like general exhaustion.  I feel too tired to want to go out and do much, but not tired enough where I feel comfortable lying on the couch all day.  After a few hours binge watching West Wing on netflix, I usually start to get a bit stir crazy even though my body still feels too exhausted to do anything.  This exhaustion-like fatigue has been happening pretty frequently over the past week, and is expected to peak over the next couple of weeks.

The good news is that I am on my last week of proton treatment, with my final treatment on Monday the 23rd!  While the fatigue is a bit frustrating at the moment, I know it will subside soon, and I will be able to start getting back to a normal routine…well a normal routine including the oral chemo and weekly blood-work.

In other news…I shaved off the rest of my hair!

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Thanks again to “Eddie” Eduardo Tramontozzi for taking the time to cut my hair!  I actually like the almost bald look.  It helps the bald spots from the proton treatment blend in a bit better.  Also, the shorter hair helps when my head starts to get sensitive from the proton treatments.  The radiation affects the hair follicles, which causes an itching…sometimes burn-like sensation.  This is usually at the point when the hairs start to fall out, and it feels a lot better when the hair is short.  It is still up in the air how much of the hair will grow back, but out of everything going on, that is not a big concern for me at the moment.

Oh, and for everyone who donated to the wacky haircut fundraiser, I fulfilled my promise and took a picture on the T.  Fortunately for me, most people were too preoccupied with some form of screen or technology that no one noticed my “unusual” haircut.  Also, the only person not wearing headphones was a lot shorter than me, so the haircut was not so obvious in the photo…but anyways…as promised, here it is:

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P.S.  The fatigue has been slowing me down on my writing, but I have a few things in the works…so stay tuned!

The Wacky Haircut for Brain Tumor Research…Thank you for Donating!!!

You Donated…And I got a pretty wacky haircut because of it!

In just one week, we raised $2,014.36 towards brain tumor research (…and a wacky haircut)!!!

Here’s the new hairdo:

Front and BackA BIG thank you to “Eddie” Eduardo Tramontozzi for offering your wonderful artistic talent and time to the most stylish monk-cut I have ever seen! 

Below are some photos of the process.  It was a blast getting my haircut with Eddie!  Everyone around us was a bit perplexed at first (…especially the customers walking in), but once they knew what the haircut was for, we all had a great time.  Thanks to Salon Arte for offering the space, and not being afraid that customers might run away once they saw my haircut in progress.  🙂

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Thank you again to everyone who donated over the last week!  Our team is already 60% of the way towards our $20,000 goal!  There are still 70 days left until the Boston Brain Tumor Ride on May 17th!  Please support crucial brain tumor research by joining the ride or donating.  Together, we can create a future with better treatments, and eventually a cure for brain tumors!  CLICK HERE to support the ride!

Thank you again to everyone who donated, Eddie, Salon Arte, and also my mom for helping organize the haircut.

Before and After Group Shot

(P.S. if anyone wants to join me, I think the monkcut is pretty trendy…)

#tbt – Boys of the Banda Islands, Indonesia

Kids in Banda

While I was wandering around Banda Neira in the Banda Islands, I came across these kids playing in the trees.  They clambered around the trees and barrels as they enjoyed a quick photo shoot.  They serve as a great reminder to find joy in the simple things of life…and that tree climbing is fun no matter where you are in the world.

The boy in the waiting room…why we need to support pediatric brain tumor research!

I am finally at the half-way point of my proton treatment, and besides some fatigue and hair-loss, I’ve been feeling pretty well.  Every day I have a similar treatment routine:  I take the T to Mass General (…usually while listening to a Spotify playlist made by my brother), take the elevators down to the Burr Proton Center, scan my MGH card to check-in, sit down, and wait until it is my turn for treatment.  Some days the waiting room is empty and quite (…usually in the afternoon).  Other days it can be quite chaotic.  Nurses and doctors walking through, the receptionists barely catching a breath in-between phone calls, and fellow patients and their families chatting away as they wait for their turn on the machines.  I often see the same people throughout the week, but as the schedule changes and treatment plans end, old patients leave, and new patients take their place.

I remember my first week in the waiting room being amazed by the diversity of people.  There are patients coming in from all around the country and the world…filling the room with an orchestra of accents and languages.  There are people of all ages, from toddlers in strollers to elderly being wheel-chaired in.  I usually sit there quietly (…sometimes sleeping), often observing everything going on around me.  Parents of children chat with each other, and older patients say hi to friends they likely met just a few weeks ago.  But I sit there quietly…not because I am shy and don’t want to talk to anyone, but there is no one my age…no one I can closely relate to.  I sometimes fantasize about engaging in a conversation with one of the older patients…and being whisked away on an adventure tail from their youth, like reading a thrilling novel.  I will at times wave high to the younger kids eyeing the candies on the counter as if they are trying to make them levitate towards them…But I rarely think about engaging in conversation with any of the parents…and this is why.

At the end of my first week of treatment, a father and son sat down next to me.  I could tell from their accent that they were from somewhere in the mid-west.  I started talking with the father who said they were staying in housing near MGH while his son received proton treatments.  We started casually talking about the weather and traffic, but we quickly changed topics to our treatment and medical situation as most conversations do in these settings.  The boy, around 11 or 12 years old, recently had brain surgery to remove a tumor, and was approaching the end of his proton treatment.  The father and boy were so excited to be almost done with treatment…to finally get back home after having been living in temporary housing for so long.  As he continued telling me about their experience, I slowly became increasingly uncomfortable.  This discomfort was not from hearing about their story, but knowing I would have to tell mine soon after…but I didn’t want to.

This was the first time I felt uncomfortable in this type of situation.  Before my tumor recurrence, I would love to make small talk with parents in the waiting room.  I would be proud to tell them what I had been through, and how well I was doing.  I hoped that them hearing how I surpassed my own childhood diagnosis would provide them with some hope and strength as their child began their own brain cancer journey.  I had beaten the odds of my diagnosis…I had gone from being paralyzed to competing in tennis and swimming…I had gone from only being able to handle a couple of days in school per week to graduating college at the top of my class.  I felt like I could serve as a reminder that a brain tumor diagnosis does not define your life, but that it is you who defines the journey.

Now, with my recurrence, I feel like I serve as a reminder of how uncertain this brain cancer journey can be.  The boy in the waiting room was only 12 years old…the same age as when I was first diagnosed.  While the father talked, I was dreading the moment he would ask me about my current situation.  When a parent is bringing their child to proton treatments, all they want to think about is the moment they can return home, and put all of their medical concerns behind them.  The last thing they want to be reminded of is the reality for many pediatric brain tumor patients…that it might be over for now, but the journey is a very long road.  There will always be uncertainty if (or when) they will have to deal with this again.

I am a reminder of that uncertainty…and it’s not fair.  It’s not fair for me, that boy in the waiting room, or his father.  It is not fair that despite it being 11 years following my original diagnosis, kids across the country and the world face the same uncertainties my family and I were presented with when I was first diagnosed at 12 years old.

Here are some sad yet important statistics (*statistics from the National Brain Tumor Society):

Malignant brain tumors are the second most common form of childhood cancer
Malignant brain tumors are the leading cause of cancer-related deaths for children under 10 years old
Malignant brain tumors are the second leading cause of cancer-related deaths in all children under 20 years old
Over the past 40 years there has been little progress in improving these statistics, and funding for one of the most prevalent forms of childhood cancer remains incredibly low.

I was (and am) lucky that my tumor is a slow-growing glioma, and more characteristic of an adult-like tumor.  Many kids though are not as lucky…and that is unacceptable.

I want to live in a future where that father and his son don’t have to face the long-term uncertainty that my family and I have (…and continue to) face, and thousands of kids with brain tumors (…and their families) face today.  In my lifetime, I want there to be more certainty for these kids and their families.  When those families finally do arrive back home, I want them to be able to put their concerns behind them, rather than having the lingering, gut-wrenching feeling that it may just be the beginning of a long journey.

…As the father finished talking about their treatment plan, my name was called, and I left the waiting room overcome with a nauseating sense of relief that I didn’t have to serve as a reminder of the reality of a brain tumor diagnosis.  I don’t want to have to hide away from these conversations though, and parents shouldn’t have to face this excruciating reality.

That is why for the Boston Brain Tumor Ride, I am doubling my team’s commitment to $20,000.  In addition to the National Brain Tumor Society’s Oligo Research Fund, our team will now be supporting their Pediatric Initiatives.  It is our hope that this money can help catalyze research for Oligo and pediatric tumors in order to develop better treatments, and one day find a cure…a day when there is finally some certainty for patients and families impacted by brain cancer.

To join or donate to our team, CLICK HERE.  All donations made by Friday, March 6th will go towards my Wacky Haircut Fundraiser for Brain Tumor Research!