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

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8 thoughts on “Medical Update 1: 5 Days Until 11 Years – finding out I have cancer”

  1. Jeremy, you are a remarkable young man. Smart, independent, adventurous, and very very strong! I know whatever comes your way you will fight with your amazing courage and with the love of your family and friends…… and maybe a few banana muffins!

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    1. Jeremy, you are remarkable and strong, and show such dignity in your thoughtful blog. Thank you for sharing it, you are an inspiration.
      I have seen a few posts of what you have been up to since Mada and it has been wonderful to hear updates on your great project.
      Now you face this new challenge that seems so unfair after what you have already endured but you are a fighter, surrounded by those who love you and admired by so many more who have known you, even though far.
      My thoughts and positive energy going out to you, wishing for good news for the new year 2015.
      Sarah

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  2. You have always and continue to be an inspiration to me every single day of my life Jeremy. I send you all my love, prayers and support! Please let me know if there is absolutely anything I can do ❤️

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    1. Phyllis & Paul Rosenstein from Westlake, Jackson, NJ are praying for your total recovery; you can never fully anticipate what advances that may become available shortly might help.

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