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.

***

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!):

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

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.”:

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