Thank You Carolyn

I know it has been a while since my last post, but I wanted to take a moment to honor and remember my friend Carolyn. Carolyn and I met when I first started my treatment at Dana Farber. I remember being incredibly nervous going into my first young adult support group session. I was still coming to terms with the physical and emotional realities of my cancer recurrence, and the idea of being vulnerable with a complete group of strangers was terrifying. Sitting just a couple chairs from me was this confident, funny, vibrant woman who embraced vulnerability and created a space for others to feel safe sharing…Her name was Carolyn.

After the meeting she told me about Dana Farber’s young adult program (YAP). She was a fierce advocate for young adults with cancer. She would trek into Boston to staff the YAP table outside the hospital’s cafe. My first volunteer activity with YAP was helping Carolyn with the table. I was in awe as she passionately shared with patients, family members, healthcare workers, and complete strangers the resources available for young adults and why it was so important to have access to those resources. We later served on the patient advisory committee together, partnering to improve resources for young adults with cancer.

I felt so lucky to have met Carolyn at the early stages of my treatment. She served as an example for how I wanted to move forward with the news of my recurrence and in my life. Before her recurrence, Carolyn returned to nursing school because she wanted to give back and help people. She didn’t let the uncertainty of cancer get in the way of living. My experience with YAP was one of the core reasons I chose to enter medical school, and¬†I would likely not have become so involved with YAP if it wasn’t for Carolyn.

To bring back one of my favorite quotes:

When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.” – Stuart Scott

Our community has lost yet another wonderful human being. Throughout my experience with cancer I have met so many incredible, inspiring people who have passed far too soon. In the face of mortality and life’s fragility, these people have taught me what it truly means to live.

In the face of uncertainty, Carolyn showed me how to live, why to live, and the manner in which to live. I cannot express how grateful I am to have known Carolyn.

My thoughts are with Carolyn, her family, friends, and all whose lives she touched.

For Carolyn, GO BRADY! ūüôā

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An Amazing Day at Fenway: Jimmy Fund Radio-Telethon

It was a day I will never forget!¬† Yesterday, I had the amazing opportunity to participate in the Jimmy Fund’s Radio-Telethon at¬†Fenway¬†to help raise money to strike out cancer at Dana Farber as well as raise awareness for the importance of supportive care services like Dana Farber’s Young Adult Program.¬† Over the two days, the telethon raised over $3.3 million, and to have been a small part of that was a true honor.¬† Thanks to all of the incredible staff from Dana Farber/Jimmy Fund and WEEI/NESN who made all of this possible!¬† And most importantly, thanks to everyone who donated to help find better treatments and a cure for cancer.

Here are some photos of the day as well as a link to the first interview on WEEI before the game.  Stay tuned for the link to my conversation with Don Orsillo and Jerry Remy during the Sox game on NESN.

Photo Credit:  My sister, Jenn

WEEI Interview

WEEI/NESN Jimmy Fund Radio-Telethon Promo

Below is a promo video that was aired the other day on NESN Live for the¬†annual WEEI/NESN Jimmy Fund Radio-Telethon on August 18th and 19th.¬† I’m honored to be participating¬†in one of the largest fundraisers for the Jimmy Fund and Dana Farber.¬† Tune in August 19th¬†for the pre-game coverage on WEEI around 5pm¬†as well as¬†NESN during the Red Sox game for a live broadcast interview about my experience, what it is like to have cancer as a young adult, and how Dana Farber has helped me move forward with my brain cancer diagnosis.¬† Looking forward to a great evening at Fenway…more details to come!

Medical Update 1: 5 Days Until 11 Years – finding out I have cancer

My doctor has a tell when she has bad news.   She will start telling stories to help calm down the mood, but in reality it elongates the anxiety.  A couple weeks into my first visit back from Indonesia, I had my annual MRI appointment at Dana Farber.  As my doctor was talking, my heart was pounding, and I could tell my mom was uneasy.  A few minutes later my doctor told us the bad news:  There has been significant tumor growth in the area of my brain where I had my previous tumor removed 11 years ago.

This all started a few months ago when I was visiting a friend in Singapore.  While relaxing in a hostel planning a night exploring the city, I had a seizure on my right side.  This was my first seizure since before my brain surgery and tumor 11 years ago.  Like my previous seizures I was awake, but this time both my speech and general awareness was affected.  I had an MRI and was monitored in the hospital for a week.  The doctors found no change compared to previous scans, and attributed my seizure to the scar tissue around my resection site (a.k.a. hole in my brain).

I returned to Bali, and resumed life as usual.¬† Well…not completely usual.¬† I started taking keppra, an anti-seizure medication that causes¬†significant drowsiness and fatigue.¬†¬†After a while I eventually got used to the medication, but then I started to have frequent headaches and odd feelings in my right arm.¬† In October, just two weeks before my first trip home in a year and a half, I had another seizure.¬† This time the seizure was focused on my upper right side, arm, and face.¬† The seizure, combined with an unknown virus I¬†contracted, made me incredibly tired for the next few weeks.¬† My headaches continued to get worse, and the odd feelings I would get in my arm became more frequent.¬† Fast forward a¬†month (…and¬†a¬†36 hour plane ride), and I was back in Boston getting another MRI.

When my doctor told me that my brain tumor was back, my heart sank.¬† Given how I had been feeling over the past few months, I wasn’t fully surprised, but still shocked.¬† The tumor has grown outwards from where I had my surgery¬†when I was 12 years old.¬† It is located in the motor-sensory cortex on¬†the¬†left side of my brain, which controls movement and sensation on my right side.¬† The majority of the¬†change can be seen comparing my scans from just three months ago, but compared to my scans a few years back, the growth has been significant.

On the drive home I didn’t know what to think.¬† My life had suddenly come to a stop.¬† Here I was looking forward to my first visit home, and now I didn’t know what the future had in store, and I still don’t.¬† My head started to fill with thoughts about the future.¬† All of the “what ifs” started flooding my mind.¬† I kept trying to reconcile what all of this meant for my hopes and dreams, for my future, for how much of a future I could look forward to.

Since then, we have been¬†running several diagnostic tests to figure out the best possible treatment plan.¬† 11 years ago I had my surgery at Massachusetts General Hospital.¬† It just so happens that the hospital still has the¬†tissue sample they took during my surgery.¬† While it is strange to think my brain (…or at least a piece)¬†is sitting somewhere in a jar, I am sure glad the medical community has a hording tendency.¬† There are a lot of new molecular tests available now that my doctors are using to help determine the best type of treatment for the tumor.¬† In addition, I had a functional MRI about 2 weeks ago where I performed a variety of motor, visual, auditory, and memory tests while they took images of my brain.¬† This will help map out my brain function in relation to the tumor so that we can decide if surgery is possible, and if it is possible, to what extent we can remove the tumor without sacrificing too much function.

And now we wait…which sucks.¬† The past month¬†has been an agonizing¬†waiting game until we get the results back to determine our next steps.¬† I am incredibly privileged and lucky though to have one of the best teams of doctors at Dana Farber.¬† Since my original surgery, I have been seen at Dana Farber’s pediatric brain tumor clinic, one of the best in the world.¬† The day after my neurologist told us the news, she discussed my case¬†with a¬†team of over 20 doctors, all of whom are leaders in their fields.¬† This multidisciplinary approach and my amazing neurologist gives me some form of comfort that whatever recommendation they provide, it will be the best possible treatment plan I can get.

The irony of all of this is that I found out about the cancer recurrence¬†just 5 days before my 11 year anniversary of my original diagnosis.¬† Initially it felt like¬†I was travelling back in time¬†11 years ago¬†to square one.¬† Over the past few weeks, however,¬†I have¬†come to realize how different this experience is going to be as a young adult.¬†¬†While there are both¬†good and bad¬†differences of dealing with this experience now as a 23 year old (…which I’ll discuss at¬†another time), the most meaningful difference is that my support network has become so much bigger.¬† I am truly blessed to have¬†amazing support from family, friends, and communities throughout the world.¬†¬†That is why I am writing this post so that everyone is updated on what is going on.

I hope this blog will serve as a means to continue to keep everyone updated, but definitely not as a replacement to talking in person, over the phone, or via email.  There are so many thoughts going through my head, so this blog will also be a place where I will try to digest my thoughts, and share them with you so that hopefully it can serve as a resource to benefit others.

If you are hearing about this news for the first time via this post, I am¬†sorry I could not tell you directly, but please know I am always open to catching up in person or over the phone.¬† For many of you reading this, it has been a long time since we have spoken¬†because I have been abroad for so long.¬† The one silver lining of this unfortunate circumstance is now I have more time to see family and friends.¬† I don’t know what the future has in store for me, but I do know that I have an amazing group of people who have my back.¬† I am incredibly thankful for that, and I hope I can use this blog to help find some meaning in something that can seem so meaningless.

For more information about my intentions for this blog, you can visit the (About Jeremy) page.

Best,

Jeremy