Medical Update: Good News!

Scan days are always filled with a dose of anxiety.  I’ve had countless MRI scans over the past 11 years, and the angst has remained constant.  I don’t have any problem with the MRI itself…in fact I have no problem falling asleep in the machine as I match the rhythms of the magnetic pulses to songs in my head.  The moment I have the most trepidation is the few seconds right before the doctor tells me the results.  My heart speeds up a few notches, noticeably raising and lowering my chest.  Most times, calm returns when the doctor simply says, “the scan looks good,” or “we saw no change.”  A few times, as I have written about before, the doctor delivers some bad news.  In 2004, “we’ve found what looks to be a brain tumor”…in 2012, “there may be a slight enhancing abnormality, it’ll be safer to monitor it more frequently”…and this past November, “the tumor has grown back.”  These moments, merely a few seconds, feel like an eternity when I replay them in my mind.  I prepare myself for these moments by sorting through and accepting the potential worst-case scenarios.

Yesterday, when I went in for my MRI, I went through my same routine.  I fell asleep to the thumping of the MRI machine, grabbed some lunch, went to Dana Farber’s nuero-oncology waiting room, had my vitals taken, and then went into the exam room to wait for the doctor.  I sat in the exam room prepared for the various results I could receive from the MRI.  I went in knowing we were not going to expect to see any noticeable change in the size of the tumor.  Instead, this scan was focused on checking the degree of swelling as well as if the tumor had become more vascular (…meaning that it takes up blood, a sign of it evolving into a more aggressive form).  Debra, my nurse, was the first to come into the exam room.  My heart fluttered for a second, but when she told me they saw no swelling or vascular nature to the tumor, I relaxed a bit in my chair.  I was relieved…everything was going as expected…I had some good news to report.  What I didn’t expect nor prepare for was to hear more news about the MRI…more good news!

My nurse practitioner, Lisa, who fills in for Dr. Wen when he is not in town, came in next.  After repeating what Debra told me, she pulled up the scans on the computer, and said, “it looks like the tumor has shrunk a little!”  Thinking that I might have misheard her, I asked her to clarify what she meant.  I knew this was a potential possibility down the road, but didn’t imagine we would see any noticeable change this soon.  She told me she and the radiologist looked over the scans together, and both agreed there was a noticeable change.  I was still in disbelief.  I knew I was hearing fantastic news, but I was skeptical that it could be true.  After so much bad news over the past 6 months, I was completely unprepared for something good like this to happen.  I left the exam room a bit bewildered, deciding to be cautiously excited until I saw my radiation oncologist the next day at MGH, as if there must be some catch to what I had just heard.

Earlier today, I went into MGH for my appointment with Dr. Loeffler, my radiation oncologist.  My goal was to first and foremost confirm whether or not what I had been told the day before was true.  When I walked into the meeting room, Dr. Loeffler greeted me, saying, “congratulations! you were told the good news yesterday, right?”  I immediately asked him if he agreed with the scan results, knowing how finicky MRI interpretations can be.  He told me that the day before he had spent an hour pressing F5 to refresh his computer, waiting for the scan to show up.  When it didn’t, he went off to a meeting, but when he returned, he looked through the scan, and was shocked to see that the margins of the tumor had shrunk to a degree that it was visible with the naked eye.  He said that we were potentially hoping to see changes like this months if not a year down the road, but that it was surprising to see this amount of change so fast.  And with that, I felt an overwhelming sense of joy as it all began to set in.

So what does this all mean in the bigger picture?  Well, to start it is a clear sign that the proton treatment I went through, combined with the small doses of chemo had an effect on the tumor.  And that is important!  In my entire treatment plan, the radiation was the period I would receive the biggest bang for my buck in terms of treatment, and it looks like I received a big bang for my buck.  It doesn’t mean I’m “cured” or that the uncertainty of my entire situation has dissipated.  There is still tumor there, it can still keep growing, it is still going to be a long journey…but for the first time in 6 months, we are getting some control over this cancer, and that is definitely worth celebrating!

Next Steps

My treatment plan remains the same.  Over the past 3 weeks, my blood platelet count dropped pretty significantly and leveled off at 70.  The minimum most people want to be at is around 150.  For those who don’t know, platelets are blood cells that help stop bleeding.  Since mine were low, due to the lasting toxicity from my first round of chemo, I just had to be extra cautious around knives and making sure not to fall (a.k.a. no skydiving allowed).  I’ve also felt a bit drowsy as well, but luckily my platelets are on their way back up.  Once they get back up to 100, I can begin my long-term chemo treatments.

I will be taking the same oral chemotherapy, Temodar, that I took when doing proton therapy.  This time, however, I’ll be taking about double the dose for a period of 5 days, with 23 days off for recovery.  Depending on how I react to the treatment, we will continue these cycles for at least 6 months to potentially 1 year.  I may feel nauseous and get fatigued, but that will all depend on how my body reacts to the treatment.

The goal of the chemo is to keep attacking the tumor cells, and prevent any additional growth.  My doctors do not expect to see as much shrinking as we just saw from my radiation treatments, but I will get another MRI in 3 months, and if the scan comes back showing no growth, I’ll be happy!

It’s a long journey ahead, but as spring emerges and the flowers and trees begin to blossom, I can’t help but feel that things are looking bright.

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A beautiful spring day to bring in some good news!
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Some delicious french toast and a mimosa to celebrate the good news!

P.S.  HAPPY EARTH DAY!!!  How lovely it is to have such great news on one of my favorite days of the year!

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1 Month from Ride Day: Please join and donate!

It is exactly one month until the 2015 Boston Brain Tumor Ride!!!

So far we have 29 riders signed up on our team, and have raised over $16,000!

Thank you to everyone who has already contributed to the ride.  Our goal is to raise $20,000, but I know we can raise even more.

Please consider signing up and joining our team!  Even if you can’t be at the event in person, you can still participate from where you live as a virtual rider!  Follow this link to JOIN OUR TEAM!

It is going to be a great day riding for such an important cause.  All of the money raised will go to advancing brain tumor research, developing treatments, and finding a cure.

Also, as a bonus, everyone on the team will get a T-shirt with the fantastic design shown above.  Thanks to Laurie Bean and Neil Quigley for putting together the amazing design!  It represents how our team is made up of people from all around the world, supporting a cause that impacts hundreds of thousands of people worldwide.

If you can’t ride, please consider donating HERE.  No amount is too small!

Below is part of a Facebook Interview I did with the National Brain Tumor Society about why this ride is so important to me:

4) Why is raising funds for the National Brain Tumor Society important to you?

Raising funds for this event has always been important to me because I want to see a day when kids and their families don’t have to go through the experience I had in my childhood. A brain tumor diagnosis comes with a lot of uncertainty about the future,and a lot of pain not only for the patients, but their family and friends as well. This past November, during what was supposed to be a brief Thanksgiving vacation home, I found out my brain tumor had grown back. At 23 years old, when I finally felt like I had moved forward with my life, the news was devastating. Suddenly, my life was on pause, brought back into the whirlwind of appointments, tests, fear, and anxiety. Because of the location of my tumor in the motor strip, it is not possible to operate without paralyzing my right side, but I am not without hope, and that is because of the advancements being made in brain tumor research. Since my original diagnosis in 2004, the way we approach and treat brain tumors has evolved tremendously. I just recently finished proton beam therapy, and will begin a year-long cycle of oral chemotherapy. This will hopefully keep my tumor at bay long enough for new treatments to be developed, which will only happen if there is funding for brain tumor research. I am lucky that my tumor is currently slow-growing, providing me with the time to wait for the development of these potential treatments. I am definitely not alone in my situation, and many people do not have the luxury of time to wait. Thousands of people around the United States and across the world hold onto some hope that treatments will be developed, and cures will be found. It is truly a global effort, one that doesn’t get nearly enough funding or attention it requires. With the ease of communication and social media, it is finally possible to grow a movement worthy of the cause. That is why we need as many people as possible to raise funds for the National Brain Tumor Society, whether it is at the ride in Boston, at another event, or virtually, because the larger the community, the more hope patients like me will have for a better future.

Long-term thinking vs. focusing on the present…cancer as a young adult

Here is another post I wrote about a month ago while half-way through radiation treatment.  I didn’t want to make many changes to it after the fact, so I apologize if it comes off as a bit of rambling…just blame the fatigue  😉

Just a couple weeks after finding out about my recurrence, a friend of mine posted the following Steve Job’s quote on Facebook:  “You can’t connect the dots looking forward, you can only connect them looking backwards, so you have to trust that the dots will somehow connect in your future…because believing that the dots will connect down the road will give you the confidence to follow your heart even if it leads you off the well-worn path, and that will make all the difference.”

Having cancer at any age is a difficult reality, but having cancer as a young adult presents many unique challenges.  When I was originally diagnosed as a kid, I had my parents making the important decisions.  All I needed to focus on was recovering, getting healthy, and eventually returning to school.  Now as a young adult, cancer feels like a giant pause button on a life that was about to launch forward.

Just a few weeks before finding out about the new tumor growth in November, I was living independently in the beautiful country of Indonesia.  I enjoyed all facets of my present moment…my friends, the fascinating culture, the meaningful work…but like most young adults a couple years out of college, I constantly had thoughts about what’s next, what do I want to do with my life, where do I want to be 5, 10, 15 years down the road?

From my original journey with brain cancer, I understood the importance of living life to the fullest and enjoying the present, but as time went by, my ambition and drive to make a meaningful difference for others increased…and with that, so did my excitement to envision a potential path forward.  I think this is natural for most young adults.  We all have goals, both professional and personal.  There are issues I care deeply about, and I wanted to take the path towards the point where I could make a positive impact on those issues…that long-term point…close enough to visualize, but still distant enough where both drive and determination were needed to get there.

When I first found out about my brain cancer recurrence, that long-term point blurred away…somewhat able to visualize, but potentially unable to attain.  When that long-term point faded away, all that was left was the point right in front of me…the present moment.  It is not that my passions, dreams, and ambitions have disappeared; rather, the present moment has become so much more important.

Over the past decade, before my recurrence, I reflected extensively on my initial brain tumor diagnosis.  This process opened my eyes to the importance of the present, but also created a feeling of responsibility to make the most of my time.  While I further understood the meaning of “living life to the fullest,” I also felt a perpetual drive forward towards the future.  I was constantly pulled in two directions by this dichotomy between living in the present and moving towards the future.  What is different now in my current situation is that I am no longer simply reflecting on past experience, but rather, cancer is my present and future reality.

Just a week after finding out about my recurrence, I was corresponding via email with another Oligo tumor survivor.  In his email, one sentence in particular stayed with me:  “We are blessed, fortunate souls; our tumors invited us to open up and see the gifts we already are living…and then some.”  Over the past few months, among all of the hardships, this is probably one of the greatest silver linings I have experienced.  For the first time since probably my surgery in February, 2004, what is right in front of me…what I consider to be truly important in life…is clearer than ever.  When faced with my recurrence, I had nothing to do but focus on the present moment.  I finally had the time to appreciate the “gifts” in my life…my family and friends…the people who have and continue to be in my life.

For so long I was driven by this long-term, goal-oriented mindset that when I was briefly in the same physical place as my family and friends, my relationships remained on a mostly surface level.  This was not because I didn’t care, nor was it a reflection of the state of my relationships.  Rather, it was that I had not previously invested nor had the time to delve deeper into these relationships.  My cancer diagnosis has provided me with the time to focus on my relationships with those I care deeply about.  I think as a result, my relationships with family and friends have evolved into a deeper bond that I now want to continue to maintain and foster.

Cancer has not only offered me the ability to make more time for these relationships, but has also offered me the perspective and opportunity to reassess my values…to reassess my character…to look deep inside myself and discover what it is that I truly value in the present.  When I had coffee a few months back with my Rabbi, he asked, “In times of suffering, when there seems to be no light at the end of the tunnel, what will I look to for the strength to keep moving forward?”  I sat silently for a few seconds to reflect, and answered, “my family and friends.”  He questioned if there was anything else, and I began to tear up as I told him my answer:  to experience true love, to find the person I want to spend my life with, to have the opportunity to have kids…Everything that was rolling through my mind were not long-term oriented goals I wanted to achieve, but moments I wanted to have the chance to experience…to cherish in the present moment.

My journey is uncertain…there is no way to know what the dots will be in the future.  This experience though has offered me a true gift to assess what matters most to me, who I want to be as a person, and how I want to live my life day to day.  This does not mean I do not still have goals and aspirations I wish to achieve.  There are many issues I care deeply about, but instead of always focusing on these distant points, I know that if I follow my heart…if I live my life authentically…then no matter where my journey leads me, I will be content with how I lived it and where I ended up.