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.

10 Years with Glioma - Part 2

 

Year 5, 1^st half - Another surgery, radiation, vacation and a job change – As I prepared for my radiation treatment my doctor uncovered another cancerous tissue during a pre-operative MRI, leading me into another surgery (EEA – Endonasal Endoscopic Approach) to biopsy the new cancerous tissue. With that we found I also had Langerhans Cell Histiocytosis (LCH) on my occipital bone, something radiation would easily take care of. As I prepared for proton radiation treatment in Philadelphia, after 6 cycles of PCV in Pittsburgh, through which I worked - computer on lap and needle in vein - all along, I found out my employer would not give me the flexibility to work from Philadelphia, and we parted ways. Through that process I found out through the American Cancer Society’s website a very cruel reality of cancer. Many companies fire their employees when they are no longer healthy. This is particularly true for small businesses and big businesses with an aggressive culture. This made me realize how blessed I was and am to work for amazing companies with leaders that have a “People First” mentality. There are simply no words to express how grateful I am to work with incredible leaders, and their support gave me the peace of mind to thrive to very tumultuous times.

Year 5, 2^nd half – New life – Between jobs I was able to do a short motorcycle trip with a friend on rented bikes. That restored my love for motorcycles, and I ended up buying one, only to travel and get face to face with a bear, an experience of a lifetime and another survival moment! After that I watched the Olympics in Rio de Janeiro. Like a friend of mine described it, “at this moment this is the happiest place on Earth”. I not only enjoyed the games but reconnected with friends and family I had not seen in years. Following that I started a new job, one that was offered to me in the coolest possible way. Was riding bikes with my boss, and as we finished climbing the top of Observatory Hill in Pittsburgh he handed me the offer as if it was a proposal. I cannot think of a better was to start a new life. To close the year we had Christmas with the full family and I had the experience of going to a Christian healer, something my aunt really wanted me to do. As we are staring at the stage an older woman dressed exactly like my grandmother used to dress to church nearly every Sunday steps on stage, as if my Nana was there telling me not to worry, everything will be great!

Year 6 – Another amazing year, filled with the joy of watching my oldest daughter really enjoy softball, a family reunion, a great trip to California with my wife, lots of bike rides, including my first Century ride, and my first long motorcycle trip, from Pittsburgh to Montreal and back through Toronto, passing through the Adirondacks and Maine, a trip of a lifetime.

Year 7 – Things only got better, we moved to a new house, I got to coach my oldest daughter’s basketball team, finished a grueling rainy triathlon in 44 degrees of temperature and travelled to Brazil to see my father survive a massive heart surgery. Made me understand how he probably felt when I was going into the surgery room.

Year 8 – Made a spectacular motorcycle trip to Nova Scotia with a friend, filled with mishaps and fun, with the high emotion of losing my wallet and recovering it at the quaint NY town of Poughkeepsie, with the help of legendary BMW motorcycle rally organizer Michael Friedle. Luck doesn't describe how fortunate we were to find my wallet and meet Michael Friedle, who would unfortunately pass only a year later.

Year 9 – The Year of the Pandemic – not all was bad in 2020, I got to spend a lot more time with my family, a great time to reconnect after 4 years working in a different town and only seeing them on Fridays and weekends. But this was probably the year when I have lost the most friends and acquaintances to cancer and covid-19. A sad reality of getting old, but if you think getting old is bad the alternative is a lot worse!

Year 10 – Back to normal? “God laughs at those that have plans”. If there is anything I learned through these 10 years is that there is no better time than now. Like I shared before, yesterday if the past, tomorrow is the future and today is a gift, this is why it is called the present. These have been incredible 10 years, I am sure they made me appreciate life more than if I hadn't gone through this. I was told 10 years ago that I could "even live 5 to 10 years". I made it, and as science progresses I hope I will see the end of cancer, there are countless people dedicating their lives to cure, treat and support cancer  patients. To all of you my most sincere words of appreciation, I could not have done it without you, and for those newly diagnosed never forget that you can live with glioma.