10 Years with Glioma - Part 1

 My journey started 10 years ago with a seizure that revealed a brain tumor, more specifically a mixed oligoastrocytoma grade 2 and 3.

This journey is divided in never ending phases, where everything is unexpected and unplanned:

Month 1 - Desperation: Without a clue about what I was dealing with, between hearing the words brain tumor and uncurable I thought I had days to live, with no one who has been through this journey to talk to.

Month 2 - Acceptance: Time to figure out what to do about it. Meeting doctors, hearing opinions, evaluating options, and picking a treatment path.

Months 3-4 – Preparation: Time to get ready physically and mentally for surgery, a time when support and prayers from friends and family were of utmost important. I think the best description of this time is “I died and went to my own funeral”, and I was incredibly pleased with what I saw. The support I received from friends and family, personally, through messages and prayer would hopefully be heard by God. 

Month 5 – Surgery time: I have to say that having an awaken craniotomy was quite an experience. If it were not for the time to recover from removing my skull to enable Dr. Duffau to perform his miracle I would do it any time.

Months 6 to 12 – Recovery and chemo: surprisingly, I was able to lead quite a normal life, but that would have never happened if it weren’t for me having very supportive leaders at work, A life changing experience was sitting in line at the public health drug dispensary in Brazil and talking to people while I waited for my chemo drugs. It was an eye opening and humbling experience to see that when you think your world is about to end others faced and thrive through a lot more.

Year 2 – Chemo and observe – the tumor stability and the mild to none side effects made me feel like I beat the tumor. Given my mild side effects, I took Temodar for 18 months, doing a triathlon, switching jobs and moving internationally through it, as if this was all planned for me to be diagnosed in Brazil, where I had an amazing support system.

Year 3 – Observe – easy to become complacent and think the journey is over, but I continued to have quarterly MRIs and that paid-off. My neuro oncologist said I was incredibly lucky as many patients drop their periodic exams after a few years of stability.

Year 4 – Recurrence – Knowing this was bound to happen I did not get desperate or hopeless, I knew I still had the nuclear option – radiation - and luckily right before I was diagnosed with a recurrence PCV was discovered to be an effective treatment for gliomas.