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.

5 Years With Glioma

What a Journey!

5 years after my surgery I am still here, healthier and wiser that I ever thought I could be following my diagnose.

From the anxiety of a brain surgery and the questions that came with it - will I be able to walk? Will my memory be OK? Will my cognitive skills be the same? - to the realization that so many people are going through similar or worse situations and continue to fight through them, I could not feel more inspired and stronger than I am today.

Today I feel like the most blessed person on Earth, I thank God every night for the last 5 years, God always teaches me something new. From the day I realized He conceded me a new day after my diagnose, to everything that happened in between I could not be more grateful.

Being diagnosed with glioma enabled me to see the best in people and realize what amazing family and friends I have. As crazy as it sounds a cancer diagnose is like going to your own funeral. You get to see who suffers with you and your tragedy. You get to see first hand how much you are loved by family and friends, and nothing can describe the feeling of being so overwhelmingly loved and supported. At the same time it was an amazing way to experience first hand the magic of Medicine and the evolution of science. At every step of my treatment only a few years had passed between the inception of my treatment options to me leveraging them, from the awaken craniotomy to the use of PCV to treat gliomas, and the proton-beam radiation treatment.


Today I was listening to the radio when Joe Biden came up and made an emotional speech about the Cancer Moon Shot. Brain tumors are very close to him as he lost his son Beau Biden to brain tumor. Joe very accurately depicted how cancer makes our time horizon get shorter. He talked about the grandparents that only ask for 2 months of life to see their grandkids be born.


From the day I accepted my diagnose to today I only ask for one more day, but I do it every day, and it seems to be working. 5 years after my surgery I have been luckier than 51% of glioma patients my age, and that number is already much higher than when I was diagnosed. In reality statistics don't matter, my and your chances are 0% or 100%, and so far I've been at 100%!


So what are the most important things through my journey? Below is my list:


Family: From the scary call following my seizure to the brain tumor diagnose, my family has always been there with me. The support, compassion and unconditional love from family is a huge blessing. With 14 aunts and uncles, 30+ cousins, a loving wife and amazing in-laws I always felt supported. And my kids, who provide the motivation I need to keep fighting - the thought of not being around for them was and continues to be my number one reason to fight for my life.


Friends: I have absolutely no doubt I've amassed the best friends in the world! From my College Reunion turned send-off trip to France preceding my surgery, to my work friends who supported me unconditionally, prayed and cheered every victory with me I will always be grateful. After hearing so many stories like mine I realized how privileged I am for the support I got from friends of all corners of life. I realized how important it is to choose the right people to come into your life.


Fellow Survivors: I could not have done it without them, they provided the most important thing I could ask for - hope. If all these people survived cancer, in all different forms, why can't I?


Doctors: They are just special people! I continue to be amazed with the stamina, intellectual ability, emotional stability and dexterity it takes to be a doctor. How could so much happen to my brain and I am still here to write the story? I can only thank doctors for going through so much to help people like me. As busy as they always are (not enough doctors for the number of sick people out there) my doctors continue to amaze me with their responsiveness, transparency, sense of urgency and patience.
It is very hard to capture in a few lines what happened over the last five years, but I am so grateful to the doctors that enabled me to be here to write this.


Intellectual Activity: Following my surgery I tried to keep my brain as rested and active as possible. When I got tired, particularly in the 2 weeks following the surgery, I slept a lot. And for the first year I always tried to sleep early to let my brain heal. But when I was idle I always had a book in my hand, I do not recall reading so much as I did during the two years following my surgery, and that was a great choice. During my radiation treatment I also stimulated my analytical skills studying the stock market. My advice is to pick something you like and go deep, especially if you are out of work recovering - much better than sitting on a couch and watching TV.


Physical Activity: As early as possible I tried to exercise. One month after my first surgery I was desperate to run but my skull was still not fully scared, so I ran barefoot thinking that before my head got hurt my feet would be bleeding. It worked! In addition I was able to bike, run and swim through my chemo treatments, except during the last cycle of PCV treatment, when I got nauseated biking.


Work: As soon as I was able to return to work I did, it was very important for me to keep a sense of normality during my treatment. In fact I even worked with a needle in my arm during my vincristine chemo sessions to ensure that this damn thing did not disrupt any aspect of my life.


Looking back the best thing I was able to do during the last 5 years was not to let this thing bring me down. If I had to write a list of the most important things in my life before glioma I would probably come up with the same exact list, excluding the doctors and fellow survivors, but given the circumstances I am happy to bring them into my list.


If I knew then what I know now the one thing I would not have done is agonize about the future. That made the first 6 months of the last 5 years the most agonizing period of my life. With this I leave you with the Life Thread, a really nice story about this simple concept, because yesterday is the past, tomorrow is the future and today is a gift, that is why it's called the present.

Too Much Experience With Glioma, and More...

And on May 27 2015 we uncovered new tumor growth. Since I've been through 18 cycles of Temodar my neuro-oncologist recommended a new drug cocktail (new to the glioma world but old to the cancer world), PCV - Procarbazine, CCNU and Vincrystine. 6 cycles lasting 6 weeks each were prescribed, and to close I am going nuclear with radiotherapy.

PCV requires a series of dietary restrictions (no foods with tyramine), so I had to eliminate from my diet my favorite staples - cheese, chocolate milk, yogurt and cold cuts were all gone from my diet for 2 weeks out of every 6.

Diet aside I tried to maintain my exercise routine and was able to keep it intact through nearly the whole Summer, but as Fall came I felt nauseous towards the end of a bike ride. To make matters worse PCV was lowering my platelets to dangerous levels and I had to leave my bike in the garage.

As the treatment progressed my platelets kept dropping and in my last 2 cycles I had to delay the start of chemo to enable my platelets to come back to a safe level.

Finally in early March 8th 2016, following the end of my chemotherapy, I went to Philadelphia to prepare my proton therapy. Preparation means making a mask that enables the proton beams to be radiated to the right spots. In the process I also had an MRI and for everyone's surprise I had a new tumor-like image on the tip of my spine, on the right basiocciput. Given the speed at which this new image occurred my neurooncologist, Dr. Jan Drappatz, quickly scheduled a consultation with Dr. Paul Gardner, an experienced neurosurgeon that operates with a technique developed at UPMC - EEA, or endoscopic endonasal approach, to do a biopsy of the newly found lesion.

By March 23 I was having a surgery, and I could not be more pleased with EEA. Basically the doctors inserted an endoscope through my nose and navigated through my brain to get to the tip of my spine and remove as much of the new lesion as possible. The doctors were able to remove 50% of it, a more aggressive resection would have meant losing my ability to move my tongue, and that would be a terrible blow to my quality of life.

To everyone's surprise I have developed a very rare condition - LCH, or Langerhans Cell Histiocitosis. This condition only impacts 1200 people a year in the US, and luckily UPMC has 2 doctors specialized in it.

I have not met the doctors that will help me treat LCH but my neurooncologist shared that my prognosis is good considering I only have it in one part of the body.

Fingers crossed, prayers on, and let's see what science brings me. I am still blown away that only one week ago I had another brain surgery and I am already fully recovered, with virtually no pain or signs that I had a surgery.

I have been incredibly lucky through my glioma treatment, always being at the right place at the right time, I really hope that the trend continues, and that science continues to evolve at light speed to soon develop definitive cures for glioma and other rare diseases such as LCH.

Tumor is Back

And somehow my tumor found a way to grow back. I am already beating the statistics for survival time in a grade 3 glioma and as expected, in this race against time, science found a new way to help.
I was diagnosed on May 27 2015 again, nearly 4 years after my first diagnose, and in less than 1 week I was able to get support from my full medical angels to decide on a treatment path.
As soon as I was diagnosed my neuro-oncologist suggested a biopsy to determine the genetic mutations of my tumor and precisely determine its grade.Given the MRI image and my history we agreed that the likelihood of it turning into a gliobastoma was low so I started a new chemo protocol with PCV - procarbazine, CCNU and vincrystine.
After my first cycle I am happy to share that I've had no side effects and in fact I was able to bike for 56 miles 8 days after my vincrystine injection.
I am blessed to have an amazing medical team, the best science at my disposal and a very supportive family to travel this journey with me.
Step 1 was accomplished, I bought enough time to be able to adopt a new, better chemo treatment protocol, and if this is not enough I will start radiotherapy in December.
As crazy as it sounds I was not phased at all by the tumor recurrence, knowing that I did not have to operate the tumor again and finding it while it is still small shows that I will need to stay vigilant forever because it is always better to be safe than sorry. The only additional anxiety point was my potential reaction to chemo but apparently my body once again shows it can take it, I suppose all these years taking care of myself are paying out.
Wish me luck and say a prayer if you read this!

What to Expect When You Have Glioma

Back in Oct-13 I thought I would stop blogging as my treatment was over but I decided to write again.
A fellow glioma patient who was incredibly helpful to boost my morale after my diagnose (Liz - The Liz Army) wisely shared that there are many glioma survivors but few blog about it, there is a need for more experience sharing and I figured I can contribute a bit more.
Three years after my diagnosis there are a few things that I should celebrate:
- I am as healthy as I was before my diagnosis, both physically and most important mentally;
- When I had my last MRI my new doctor was thrilled with how well my surgery was done and with the fact that the tumor has not grown back;
- On July 9th I stared at my watch's date and could not remember why that was an important date - turns out that July 9th 2011 was the day I had the seizure that led me to discover and treat my tumor. I always looked at the date as my tumor birthday and this year I forgot about it, I suppose the tumor is not as present in my mind as it used to be.
But to think that a glioma will not leave enduring scars is not realistic and I wanted to share some insights as I've noticed that many survivors suffer from the same anxiety points and wonder if the changes we all go through have to do with the tumor, the anti-seizure drugs we took or take, or with the surgery itself as we all removed a chunk of our brains and that must have some side effects right?
These are all valid and real concerns but before I share my experience it is important to remember that this condition tends to hit young adults (let's say ages 30 to 50), being a young adult brings its own change factors so it is hard to dissect what is driven from the tumor and what is simply a natural life stage issue. I will not try to separate these but just share what has changed in my life without judging if it is due to the tumor, the drugs or the surgery. Here is my "what to expect when you're diagnosed" list, one thing that seemed to be common is the fact that everything in your life will be amplified:
1. Friends and family will be closer to you than ever - if you have a tight family and group of friends expect them to be a massive support group. I was incredibly blessed to have been diagnosed in Brazil during my short 2-year work stint in São Paulo. My parents, my school and my College friends were an incredible boost to my spirits and played a big role in my positive attitude, and I cannot forget the support I got from my friends in the US through emails, FB messages and prayers;
2. Financial concerns will become a major issue - I was always the bread winner but my wife and I had to face the possibility of a life without me working. My wife worked hard taking care of the kids and working part-time before my tumor but as the possibility of her needing to be the bread winner came closer she had to work hard to get a full time job;
3. Your perspectives will change - seeing life so close to an end has an incredible effect on how you see the world. Expect to have a greater appreciation for those who devote their lives to taking care of others and those who are just living a simple life. All of a sudden the priorities you were so sure everyone should have become secondary and you learn to appreciate other people's concerns and priorities;
4. Time will become more precious - the possibility of a shorter life makes your time more precious and you might find yourself less patient;
5. Long-term plans become secondary - a surprise like this completely changes the way you think about long-term plans such as retirement and career aspirations, anything beyond next year seems way too far ahead;
6. Your energy level might go down - no matter how active you were before the tumor, the time you spend in bed after the surgery, the exercising restrictions following it and the need to rest to let the brain heal will reduce your energy level. Don't panic, only when you feel ready try to reestablish a work-out routine to boost your energy and get you back to bright, the endorphin released by exercising will help boost your energy so try to incorporate exercising to your daily routine a few months after surgery;
7. Expect occasional anxiety crisis - we live in fairly stressful days and being diagnosed with glioma does not help. Expect to find yourself worried when you have any kind of headache, I found myself feeling them when I had sinus infections and would not relax until my next MRI. This is totally normal but try to focus on other stuff - family, work or any goal that you can create to keep your glioma thoughts at bay;
8. Expect to hear dramatic stories - I've found myself being a sounding board for several people in the middle of their own crisis. When you share that you have a glioma people will open up because they know you can relate to a personal tragedy. Listen carefully and open up too, it is great to get stuff out of your chest every once in a while.
9. Expect to become more philosophical - You will appreciate little things that you've never before appreciated and will not sweat over things that many people would get depressed about - simple things like a walk in the park with your kids or just watching how people interact and what motivates them will become enjoyable experiences but big issues such as losing a job or crashing your car become less important - you can always find another job or fix your car later. You will find that it is very hard to get a piece of news worse than "you've got a brain tumor" and as such you might find it very hard to get phased again by bad news;
10. Expect havoc in the family - all these changes happening so quickly will definitely affect how you interact with your partner and I hope you find one as patient as my wife who has been a trooper through all this and also wondered if all these changes were happening because of the tumor, the surgery or the drugs.
The reality is we all change with time, we all are a product of what we live and this is just another experience that shapes who we are.
My advice to you is to focus on the present, try to live as best as you can one day at a time and always know that God is with you, whether you believe it or not. Right before my surgery I walked into an image of Christ at a top of a hill near Montpelier and that powerful image reminded me that there will always be people that go through a lot worse things than this and still manage to change the world for better. Stay positive, disciplined and focused on your cure but don't let glioma take over your life, we can live with glioma.

Treatment Over!

I am thrilled to share that after nearly 27 months from when I discovered my glioma my treatment is over! Other than the periodical MRIs to monitor recurrence, which I hope and pray never happens, I am back to life without glioma.
An experience like this changes your life and of your loved ones forever, but believe it or not it can be for the better. You will grow spiritually and will appreciate yours and your brothers' and sisters' lives at a higher level.
I was incredibly fortunate and blessed for my treatment, it was a resounding success. Starting with the surgery where I had all of the grade 3 tumor resected without any neurological impairment, followed by 18 months of Temodar chemo taken with nausendron for nausea. The chemo had absolutely no impact on my quality of life - no nausea or any other bad feeling. I also had Keppra, an anti-seizure medication that had kept seizures at bay. I was feeling so well during chemo that I was able to run a short triathlon during cycle 14 and I swear that during chemo weeks my endurance was up.
This will be my last post in this blog, I want to leave this for anyone that has been diagnosed and is assimilating the news and thinking through all the things that can happen following diagnose. 25 months after being diagnosed, 22 months after surgery and one week after my last chemo cycle I want to share what has worked for me through this journey:
- Clear your mind of bad thoughts - understand that this is not the end but the beginning of a new journey to a mysterious land. Life is unpredictable and this is just a reminder of that, so don't feel that all of a sudden you are mortal because you have always been;
- Focus on support - family, friends, healthcare professionals and fellow glioma patients provided incredible support to me, if it weren't for them and their prayers I would not have been able to stay positive and happy. I will never be able to thank them enough, I am just thrilled to be here to share my story, we can live with glioma;
- Stay focused on life - do as many things as you can to be as close to your pre-glioma life as possible. In my case working-out was my way to feel normal. Running, biking and swimming were key for me, but overcoming my fear of swimming was the best moment, it felt like I left my seizure in the water;
- Exercise during chemo (if you can) - there is growing evidence that exercising helps chemo, I will keep writing on my "We Can Think With Glioma" compiling evidence of potential causes and cures for this malady;
- Exercise your brain - I have never read so many books in my life, from Siddhartha Mukherjee's "The Emperor of All Maladies - a Biography of Cancer" to 14 Volume Arnold Toynbee's "A Study of History". My logic is that nothing like exercising the brain to keep it strong;
- Sleep well - I religiously sleep 8 hours a day for the first year and went to bed as soon as I felt tired. I even left my sister-in-law's wedding (she got married right after my surgery) to sleep as soon as I felt tired and to keep my "8 hours of sleep every night" streak intact. My logic is if the brain recovers at sleep I decided to do it well.
- Eat well - I have always read in sports' magazines that eating a lot of foods with different colors is the easiest way to eat nutritiously. Color can be an indicator of nutritional variation in the food. I used to joke that I only ate things that move, but now I incorporated vegetables and fruits to my diet and I actually feel better regardless of the glioma;
- Thank God for every day you get - my late night prayers of appreciation for everything God has done for me, from the family and friends I have to the doctors and people I met through my glioma, are a reminder that when we decide to help each other life becomes more plentiful and we get closer to Heaven. Building Heaven on Earth is the best way to earn a place in Heaven.
God bless you, stay strong and try to stay calm. At times emotions take over rationality and fear kicks in, this is perfectly normal, but don't let it happen for too long. Every person has a different way of coping with glioma, find what works for you and keep it out of your mind. This is a mind vs. brain game, as long as you can control your mind you will be able to enjoy every day of your life, and I hope you have a lot of life left. I personally would not mind crossing the 100 year-old mark, but this is not up to me, so I live life one day at a time. Focus on the present because yesterday is the past, tomorrow is the future and today if a gift, that is why it is called the present.

2 Years With Glioma

What a journey! Today is my 2nd glioma birthday, exactly 2 years and one day after I had a seizure that led me to my glioma.
While a nightmare at first I still believe that this has been a blessing, I have been living a more purposeful life and have invested every minute of it into something valuable and it still feels like I should invest a lot more time particulalry into friends and family.
Life is always too short when you live well and mine just doesn's stop getting shorter, I still hope to live until I am 100 and I am loving all the scientific contests that revolve around extending life.
Today I see the world differently and many things that I took for granted make no sense to me today. As I listen to crazy nationalistic ridiculous retoric from several countries around cyber-security and privacy I wonder what haven't people learned with the past, before being citizens from any country we are humans and should act like such. To make my point I will share 10 lessons learned with glioma.
I was first supported by several nurses and a dedicated doctor from the Brazilian Northeast, a region from which many migrate to São Paulo in search of a better life. At the crowded public hospital, HGG - Hospital Geral de Guarulhos - where I was taken after my seizure, I learned the value of free health care, one that while not perfect and severely under-funded/mismanaged, is still full of commited professionals who dedicate their lives to taking care of people and that put life ahead of money, lesson #1 learned.
From there I was sent to a private hospital as HGG did not have an MRI machine, it had only tomography equipment, accurate enough to find a mass in my brain. There I learned the value of the dedicated nurses and sensitive people. As I received the news of my brain tumor and fell into a slight depression I was constantly supported by the dedicated professionals who watched me cry for several days. They showed me how privileged I was to be supported by their dedication, and by total coincidence I was taken care of by the same nurse that took care of me at the public hospital. If one hospital job is not enough how about two? Lesson #2, purpose is the most important quality in life and provides the strength to do anything.
Following my time at the hospital I arrived at my in-laws where me and my family were supposed to stay until our move arrived. Our plans changed drastically, we were supposed to move to a friend's rented apartment and had to replan as I had no idea of what to expect from my glioma. Lesson #3, plans are important but don't count on them, they are only plans. When reality hits you have to live it and do the best you can under your circumstances.
For a few days I would cry every time I looked at my daughters until one day I woke-up and thanked God for another day. Lesson #4, don't under-estimate God's power.
As I started living one day at a time I realized the true value of life. Life happens now and as a portrait at my grand-mother's house used to say, "Yesterday is the past, Tomorrow if the Future and Today is a Gift, that is why it is called the Present". Lesson #5, live every minute as if it were your last one.
As I picked myself up from the ground I started researching how to treat my glioma and how long I could live with it. Several strangers helped me more than any doctor could have helped me. The experiences from people like Liz, Scott Vickroy and Mark Green gave me more strength than any statistic or doctor. Lesson #6, the most rewarding help is the one from complete strangers.
As I prepared for surgery and got increasingly scared with the prospect of messing with my brain I was supported by many friends and my wife, who gave me an incredible book of memories and good wishes, not to mention my wrist-band "Força Patrick" that is still hanging in my wrist. Once it falls I will know I am cured and I hope this happens shortly. My College year-end turned farewell party felt like attending my own funeral and I was very proud of the love my friends nurtured for me. As my friend told me, "we sow what we reap". Lesson #7, family and friends are the only treasures that matter in life, cultivate love and friendship and you will get it back when you need it most.
Once in France for surgery I was welcomed by a country and people to whom honestly I had nothing better than prejudice for. I always thought of France as arrogant and unwelcoming from my time working at a French bank and my back-packing trip to France. I would never dream that the country I once despised would be my honor birth-place, where I was saved and treated like a king by the people of the Montpelier University Hospital. Lesson #8, there is nothing to gain with prejudice, rid yourself of generalizations based in one observation and treat every individual like a unique person, most people are good, bad people are exceptions no matter where you are - don't let a bad apple poison the bunch.
Once back to Brazil I rested for 30 days to get my brain back in shape sleeping and reading as much as i could. It was hard to stay home for that long so I used my time to reconnect with as many friends from the past as possible through Facebook. It was great to talk to so many people to whom I had not spoken in a very long time and the uplift I got from it was surely helpful in my recovery. Lesson #9, old friends keep you young and energized to live long, nurture your friendships and even if you haven't talked to your friends get in touch, good friendships last forever.
Now I invest a good amount of time reading, learning and sharing my thoughts in this blog, I hope I live for many additional years (at least 60 so I can break 100!) and that you find these tips helpful, if you are a glioma patient or caregiver you can see there is hope, if you are a friend or a family member just know that I felt every prayer and wishful thought sent my way, I dedicate this blog and the next years of my life to you, if it weren't for you I would not find the strength to be here. Lesson #10, love thyneighbor as thyself.
May this world find the peace I have found through my glioma, being close to death made me more alive than ever, I hope and pray every night for humanity to become one entity, this is truly what God is and if we all try to build Paradise on Earth we can easily get there, it all starts right here right now. Obama, after Snowden's revelation of cyber-security spying I hope you and the NSA crew enjoy this post, peace!

A Headache will never be the same and so won't be a clear MRI!

This was an exhilarating but phenomenal week! Weather changed and I had a terrible headache, one that made me barely sleep on Sunday. I have never been the type that complains about headaches, for me to complain about pain it needs to be hair pulling and this was the case. To make things worse Brazilian basketball star Oscar Schmidt, who was diagnosed with a grade 3 oligoastrocytoma two months before me, was all over the news last month as his glioma recurred. It made me wonder if this was my time too and I've never been so anxious before an MRI.
I had my MRI on Monday at 10PM and as always I slept inside the machine. For whatever reason MRI machines have the same effect that TV has on me, it makes me sleep.
As I was dreaming inside the machine the MRI was interrupted and I was waken up to answer a few questions. As I was pulled out of the MRI machine I found myself surrounded by a huge crew of doctors, nurses and administrators. The first thing that came to my mind was "this is it, the damn thing is back!".
First question from the crew was "can you hear us?" as I had ear plugs on. "Yes" I replied and as I stared at them waiting for the freaking question I get a "your MRI was wrong, you need a perfusion and our administrator did not notice it, your insurance does not cover it and you need to pay for it, is that OK?".
Talk about the best way to get bad news, everything is relative and getting a $1,000+ bill instead of a positive recurrence was great. I never thought money would mean so little but it did, my MRI has remained unchanged since my December MRI with perfusion and therefore my tumor did not grow!
As I move on with life I have to confess that my long gone fear of dying came back last week but I am happy to say that it is gone again, I can focus again on life and live in the present, the only tense we should live by. I just read an article about Henry Molaison, a man who at 27 was operated and had his hypocampus and amigdala removed, only to wake-up without the ability to memorize anything for more that 20 seconds. For not having a long-term memory Henry never kept a grudge or resentment. American neurologist Suzanne Corkin wrote a book called Permanent Present Tense about it, of course this will go on my list and as soon as I finish my Study of History I will dive into it, nothing like learning from those that left us precious lessons from the past to apply in the present.
Living in the present is great and is the only certainty we have, not to get too philosophical yesterday is the past, tomorrow is the future and today is a gift, that is why it is called the present.

What I Learned with Glioma

It has been a while since I last wrote about my glioma, I have suddenly felt an urge to share what I have learned so far. Nearly 2 years after being diagnosed I was discussing with my "twin-brother", the fellow Brazilian operated one day before me at Montpelier, what has changed since our surgery. I now feel prepared to share the key lessons from the incredible experience of feeling mortal and I want to share with those with and without glioma what I have learned so far. Here are my key take-aways:
- Death is a great equalizer and it shows the true value of life: from the moment I was hospitalized at a public hospital in Guarulhos, where as in most public hospitals in Brazil patients vastly outnumber health care professionals, I learned the extreme value that people that live to serve others deliver. The attention I got from the nurses that work for very little, the sympathy from all those that surrounded me during my walk through the desert of my diagnose and most importantly the understanding that we are all living creatures worth exactly the same under Heaven made me have a much better comprehension of life and its value, not only my life but that of every human being and living creature;
- The value of time: time is the most precious gift we have as from it all other gifts derive. I have shared that yesterday is the past, tomorrow is the future and today is a gift, that is why it is called the present. Nothing can be more true, the present is the only certainty we have and we should always respect it as God. Of course we are all humans and as such we are subject to making mistakes, sometimes bad ones, but trying to do good now and learn from our mistakes, which is truly the only value of the past, is our most important mission.
- The eternity of good: history abounds with examples of how doing good outlasts evil. It is no accident that Salomon's kingdom is gone but his religion, Judaism, is still alive for the values it preaches. The same can be said about the Roman Empire, gone, and Christianism, still alive. Another example comes form the Ottoman Empire, gone, and Islamism, still alive. The true value of all religions is setting a foundation for people to put the collective above the individual as God resides in the collection of all individuals and nature, by definition, as He is omnipresent, omniscient and omnipotent. Unfortunately humans ritualized religion and turned a deep spiritual exercise to understand what we are doing here into a set of rituals and divisions to separate one group from another. I just read a brilliant book from a friend that described his spiritual journey while travelling in India. Among incredible descriptions of how he felt God everywhere, particularly at the Ganges River, he pictured a scenario where people would worship themselves. While selfish at first it would lead to a state where no one would blindly follow others to destroy, corrupt or impose values on others in the name of religion. If we all followed the common thread of all religions, not doing to others what we do not wish done to ourselves, the world would certainly be very close to, if not a perfect portrait, of Heaven.
- I was never religious but going through this journey felt a bit like attending my own funeral. In fact a friend shared with me that my College's year-end/"go-away" party right before my surgery was thought to be by many the last time they would see me in good health. I have to say that I am very fortunate to have the best family and friends in the world and for that I am grateful and proud to have lived a great life and for making mostly great choices.
As I mentioned in my first take-away life is about feeling closer to others and to nature, and not about separation or conquest. I was blown away this weekend when I greeted a few people in a condo, where in theory everyone knows each other. The two ladies walking up the street that I greeted almost had a happiness fit for the simple fact that I gave them a good morning. They shared that nowadays no one says good morning and how refreshing it felt to finally get one from a by-stander.
No one knows how long life will last, it can last a few days or several years, I certainly hope for several decades of a healthy and productive life, but the secret to eternal life is to live life while it lasts, and until the last bit of life exists in us we should all do our best to be kind and gentle. Like I taught my daughter while playing basketball with her this weekend the secret to a happy life is not playing to win, but playing to enjoy the game as we will all eventually lose. Life is not about the destiny but about the journey, I really hope you all have a great trip and enjoy the ride, I certainly am enjoying it and I am glad you are part of it.

Don't Let the Future Get in the Way of the Present!

Just had an incredible weekend, 3 days celebrating my 10-Year graduation from business school with great friends, most of which I have not seen in a long time.
I was invited with a few alumni to speak at a panel and share insights with students about how to prepare for the future, from job-hunting to networking and how to better use their time at school. Interestingly we all had wildly different words of wisdom to share, and in some cases diametrically opposite opinions. After thinking of what happened I concluded that the secrets for a student's career do not exist, they lay in the future and each individual has to create and follow their own path. As we search for answers about what to do and the potential outcomes to our future it is easy to forget about the present, particularly in stressful situations such as a glioma diagnose. To quote Ralph Waldo Emerson, whose words are embossed in a wall at my business school, "do not go where the path may lead, go instead where there is no path and leave a trail".
I was reading an interview with Peruvian writer Mario Vargas Llosa and found a quote that inspired me to write. After being asked how the Literature Nobel Prize change his life he said "I continue to do my job, now with a bit more difficulty because the pressure is greater. It is important to keep the illusions and the projects until the last moment to fight against time..."
The greatest philosophical challenges are always sitting in the future, "why are we here?", "what are we supposed to do?", "what is the path to enlightenment?". The reality is that both the past and the future do not exist, we are what we do in the present and therefore I would argue that with or without a glioma the future prospects of a glioma patient and a random walker are similar as they are both uncertain.
A friend of mine went through the painful and powerful process of following and supporting her son's cure from a neuroblastoma and she shared words from hew son's doctor that are worth sharing: "his chances of survival are 0% or 100%, what happened to other kids is completely irrelevant". Luckily for all that love them and for my inspiration he is 100% and is an incredible kid.
If you are diagnosed or go through any form of hardship stop worrying about the remote future and ask yourself how you might improve your life now, don't wait for tomorrow to live a plentiful life. I have changed very few habits after being diagnosed but the habits I changed have drastically affected the way I perceive the world, making me more thoughtful and purposeful. Below are to me the most important aspects of my life that I would recommend for someone under stress:
- Turn off the TV and read more books: what you see in the news is probably irrelevant and has no way to impact your life in the future. We cannot react to the infinite pieces of news that we are bombarded with everyday, so pick an interest and go deep.
- Exercise: use your body as a means of transportation, we were born to run and as such need to remain active to maintain our sanity. It is no accident that the brain releases stamina when we run, the body likes it and recognizes its benefit.
- Think: with the information you accumulate while reading and the lonely time you will get exercising you will have time to process the information and find a way to translate it into your purpose.
- Eat well: my new interpretation of "eat well", which used to be "I only eat things that move", is now "eat as many colors as you can". Minerals in the soil are reflected in the colors of food, so the bigger variety of colors you get (preferably naturally colored) the better you will feel.
- Always remember the 3Fs: family, friends and fun. Don't fall in the trap that work, family, friends and personal time are at odds. We all have busy lives but need to find time for all these pillars, If you like your work, exercise and read you can consider the fun part taken care of. Family and friends will always be there for you when you need them and you should always be available for them when they need you. Being with family and friends is always fun so once again you closed the loop!
When disaster strikes don't worry about the future, look at where you are and focus on your immediate next step to progress, happiness and do what you think is best thing for that moment, and never forget that most likely you will have to live with the consequences of your action, so treat the present and live responsibly.
So much for saying that everyone should find their path to close with a laundry list of things to do to achieve happyness. I hope you build your list and eventually share it with others, I am sure my list will match someone else's list and this might be you.

Two Months Without Chemo And...

Yesterday I received the best news since my post MRI with perfusion images were evaluated. After finding out that no apparent tumor growth was evident on my MRI from December 28th I stayed for the first time three months without an MRI, changing the frequency at which I check myself out. The results are in and no tumor growth was apparent, same images as my post-surgery MRI from January 2012.
Given my tolerance to chemo and the apparent lack of side effects from a prolonged use of Temodar I am about to begin another 6 cycles of chemo to play it safe, but I hope I am taking it for no reason! As I do my own research and get extra life I get more energized about the prospects of all those afflicted by brain tumors and cancer. Incredibly I started wondering if obesity was just a type of cancer on the fat tissue and the answer might be yes according to Dr. William Li, who presented his angiogenesis theory at a TED conference (http://blog.ted.com/2010/05/17/can_we_eat_to_s/).
The interesting theory he exposes is that cancer might be an abnormal development of blood vessels that grows uncontrollably, hence the successful adoption of Avastin to treat the most aggressive form of brain tumor, glioblastomas. He expresses a theory on eating to starve cancer by essentially preaching a list of different foods that might help combat cancer. While I don't buy that eating well is a recipe for cancer cure I do believe that there is something to be said about trying to eat a menu as diversified as possible. While I lived in the US I have to say that my menu was fairly restricted, the restaurant options around work were limited and I was never the kind of person that took my food to work. In fact I was simply more likely to live by my joke of not eating things that do not walk!
While talking to my wife about flowers she mentioned how different types of soil minerals affect flower colors. I have also read extensively that when choosing food options the simplest way to ensure healthy eating is by having lots of colors on the plate. I would not be surprised if a good variety of minerals in a diet leads to a healthier body, after all we are what we are and got here by being omnivores.
I have shared in my "We Can Think With Glioma" blog that the highest correlation to cancer incidence is latitude - the higher the latitude the higher the cancer incidence. While at first I thought of sun incidence (or lack of) as a potential cause for cancer I am now wondering if the restricted number of food options might be to blame. As humanoids migrated away from the tropics they were confronted with the exposure to seasons and were therefore in need to hunt to survive as picking fruits and vegetables from the ground were no longer an option. This also created the need for farming, a way to produce and accumulate food for the harsh winters, providing fewer but more reliable sources of food. These two factors - lack of sunlight exposure and a more restricted diet - might be factors to be further investigated, but while the infinite number of causes might be to blame the finite number of cancer cures seem to be working better and better, great news to all of us who were abruptly reminded that life in our current form does not go on indefinitely.
In any event to celebrate this great news I am signing up for my first post-tumor triathlon and can't wait to share that experience. While swimming might not seem like the best idea for someone who is still taking anti-seizure medication sitting at home waiting for death to arrive sounds like an even worse option, so to prove that we can live with glioma and hopefully for a very long time I am going to continue to train and tri until I can, I am back and as energized as I have ever been!

More Great News!

Yesterday I visited my onchologist and received one great news after another. He shared that a number of patients are seeing similar recoveries to mine, temozolamide seems to work wonders around gliomas and progresively more patients are cured with little side effects for some lucky people like me - no hair loss, no blood changes and no nausea (except for when I felt adventurous and tried chemo without anti-nausea medication).

We decided to extend my chemo cycles for another 6 months in case I still have tumor cells that are not visible in the MRIs, which I now have every 3 months (next one on March 28th). He also shared that my theory around exercising may be right (check out www.wecanthinkwithglioma.blogspot.com), it looks like exercising not only improves outcomes for cancer patients but it also helps prevent cancer and tumors. I was excited to get another 6 months of doping - I feel much stronger on the bike when I am on chemo. UCI, watch out for athletes on temozolamide, Rio here I come!

This weekend was very special, my friend's son had his 19th birthday party and his daughter just got a great job after graduating from College. Many people go through this cycle and I can only imagine how proud they are when it happens, but my friend had a stomach cancer years ago when his kids were around the same age as mine. When I was diagnosed one of the things I wished the most was to live to watch my girls graduate from College, and regardless of my tumor status I have no guarantees I will likve to see that. Yet we all live as if these are sure things and plan our lives as if everything would go according to plan. Watching the happiness in my friend's expressions and Facebook posts was incredible, but when I realized how much more special a moment like this is when we stare at death from so close all of a sudden every moment feels deeper, longer and stonger. I was living his happiness through my normal life, and once again I felt a lot more joy from watching what may be a trivial moment to a by-stander like me.

One of the best lessons I learned from this experience is that regardless of our plans, actions and results nothing will go according to plan. Life is about enjoying the journey, not about the destination or result. When a great friend of mine lost his life to cancer his last words to me were "what a journey". I vividly remember his skiny smilly face summarizing life in this brilliant phrase and while I have always lived as if there was no tomorrow I never really believed that no tomorrow was an option. Being aware that life is finite, at least in our current state, made me focus more than ever on the present and I feel happier than ever. Losing my fear set me free, and I invite you to live without fear. No matter what life is great, the world is full of things to do, look around and you will not find it hard to see something to do to make the world better, from giving a smile to a stratnger to walking a lost soul to his destination. I have oddly a few times walked with people in the street who ask me for directions and I just reply "walk with me!".

So many times I looked down and kept walking when strangers approached me for something, from beggers to lost people looking for direction, Since my experience I have totally changed my attitude, I have developed a profound curiosity for what drives people. Understanding and more importantly respecting everyone's driver and perspective made me better, and as crazy as it might sound I would not change my life for anything in the world, and this is the best testament for how I lived, for the great family I have and for the great friends I made, thank you all who have prayed for me. Whomever your God is keep praying, He is on our side! We all have our journeys through the desert but we should never quit walking, life is about turning challenges into adventures, if you can do this at any time you will have a great life, no matter how long it lasts or what happens along the journey.

Change in MRI Schedule!

After a long year of chemo I have good news to share! I have completed and reviewed my MRI with spectroscopy and perfusion and my tumor has officially disappeared from the MRI, enough for me to move to a quarterly MRI schedule.

In any case my Tumor Board (that's right, when you have a neuro-surgeon and an onchologist treating you you get to call your doctors a Tumor Board!) has decided that I should continue with my chemo cycles. I am getting too comfortable with my health and keep postponing my onchologist visit but since I am not having any side effects whatsoever under chemo we are extending my treatment for another 6 months.

I will do another MRI in March and if nothing is shown that is excellent news! My last chemo cycle was in December and it will probably take me another 6 weeks to start my next cycle, the time between my next consultation and the traditional wait for the Public Health Care system to evaluate my need to extend my chemo and provide me with free drugs.

In the mean time I continue to work hard, exercise and live a full life, if things continue like this my upcoming birthday will be a massive party!

I insist in my belief that the combination of Temodar and exercising is the secret for my cure, this might be just luck or simply the effect of Temodar alone, but if you want to check my theory just go to my latest post on "We Can Think With Glioma" at  http://www.wecanthinkwithglioma.blogspot.com.br/.

Time to sleep, really rainy and busy day in São Paulo, but it still feels great to live with glioma, every days feels like a real blessing and now more than ever I need to make everyday count, I hope you do that too!

Happy New Year: One Year After Surgery!

Wow, what a year! I have just returned from my one year consultation with the angel that a year ago removed 95% of my tumor without leaving me with a single impairment. The consultation could not have been better!

Dr. Duffau is a very busy man and somewhat serious, and when I told him that I was feeling better than before my glioma he jokingly asked "should we remove the other side?".

I am now on my 12th chemo cycle and Temodar seems to be doing wonders in my brain. When I decided under D. Duffau's advice not to follow the standard protocol of radio and chemotherapy - I did not undergo radiotherapy - I was aware that I was taking a calculated risk, and the risk paid off! What is now left of my tumor is so little that it can barely be seen in an MRI. There are a few bright spots that I will check in a new, more detailed exam - an MRI with prefusion and spectroscopy. This will help us determine if what I have is dead tissue or left-over tumor. The phenomenally great news I received from Dr. Duffau is that he left the door open for me to interrupt my chemo treatment, something I will discuss with my onchologist and Dr. Ribas after my next exam.

I don't think things could have gone better after this first year. I have never lived life so intensely and cannot complain for a second about my condition:

- I have been having breakfast and dinner with my family everyday for the first time in my life: nothing like living close to work and skipping my crazy triathlon training schedule!
- I play nearly everyday with my daughters at night;
- I work 11 hours a day;
- I have been able to exercise enough to keep me happy - ran two 10k races, biked with friends and alone nearly every weekend and even did my unofficial triathlon;
- I read 12 books from start to finish, from the History of Cancer to the Medieval History of Europe;
- I read my weekly magazines every week, like they are suposed to be read;
- Updated this blog to provide comfort to those that need it, just like others provided comfort to me when I most needed it, and to keep my friends and family up-to-date with my latest updates.

One might ask how is this even possible and my answer is I have never watched so little TV like now. São Paulo is a dangerous city and it is not hard to fill the news with bad news, so I simply decided to ignore it and all of a sudden São Paulo became a liveable and safe city for me! Like FDR said "there is nothing to fear but fear itself".

Of all the factors I could share about my success to date I believe that the most important ones are knowing that I have an amazing family, the best friends in the world and that God is on my side! With all the prayers I have received, including from people that didn't even know me, I don't think things could have been any different. I was never a very spiritual person but after all this it is hard to believe that life is restricted to now, like the agnostic tradition preaches.

Brain tumors are unpredictable, just like life, and I hope to have at least 62 healthy years ahead of me, the 100 years-old mark just seems so cool! But the number of years we live is significantly less important that what we do now, today, and for that I want to thank everyone that has been following me and cheering me up in this journey, I hope that everyone experiences the avalanche of love I have experienced.

In three days we celebrate Christmas and in nine days we enter a new year. It is great to see how all of a sudden people become nicer, more peaceful and wish everyone a great 2013 during the holiday season. The great news is that it is up to us to make it happen, let's keep the Christmas spirit alive for the whole year of 2013 and we might witness the best year in the history of humanity.

Merry Christmas and a Happy New Year!

Overcoming Mental Barriers

What a month! Sixteen months after trying to reach Pittsburgh, when I had a seizure at the Airport and later found I had a brain tumor, I finally made it there!
It is hard to express with words how happy I was to see again all the friends I left when I lived there. The expression of happyness in everyone's face as they saw me is simply impossible to describe. All the prayers sent my way when I was diagnosed and every smile given to me when I arrived mean a lot to me and I will be eternally grateful for the friendships I cultivated in my 10 years there.
Getting in a plane and arriving at Pittsburgh was an enormous mental barrier, I have always asked myself if I would ever make it back and I was so happy to land there, the first mental barrier was gone.
Arriving at my former work place and watching my old peers smiles as I surprised them without advanced notice was priceless, it was hard to contain myself and not cry but I did, mental barrier number two gone.
Biking with my former cycling buddies from the Mount Lebanon Caffeine and Cycling Club was the last mental barrier I overcame at Pittsburgh. After all these months I would always find myself worrying if I would ever be able to keep up with the group and climb Mount Washington again. Mental barrier number three gone.
Yesterday I went to pick up my chemo drugs at the Public Pharmacy where the drugs are distributed and a system crash that would normally drive me nuts did not. I am now on a cycle where literally my drugs are released on the same day I have to start my chemo cycle. Without the system the pharmacy workers cannot confirm my drug prescription and therefore release my drugs. I sat there for 7 hours waiting for my Temodar do be released and started talking to other people that were like me waiting for their or their relatives' prescribed drugs to be released.
My first encounter was with a guy that was there to pick up his grand-mother's insulin. He was lucky and arrived early and left with his drugs in four hours.
As time passed I left to grab lunch since it was clear that I had enough time to do that. I came back and the system would simply not recover. As in an act of God I looked at one of the guys that worked there and decided to talk to him to see what was happening.
As I explained to him my situation and that of others, he calmed me down and shared that everyone in there was at an emergency situation but that nonetheless the drugs could not be released. I asked him what would happen if the system did not recover and he said that nothing could be done. I asked him if those in life or death situations would simply die and with the certainty of an angel he explained why he worked there he that no one would die.
He was a very young guy named Marcelo. He had a degree in publicity that had previously worked in IT. He shared that the Health Department IT system was the best in the country and it would come back fast. He also gifted me with his amazing story. He was diagnosed with a pancreatic condition that would shoot his amylase enzimes to deadly levels, a condition that killed his dad on the same day he was diagnosed. After several months of treatment his doctor asked him if he believed in God. He said that his faith was the only thing that carried him throughout the treatment and the doctor, who confessed being an atheist, shared that Marcelo's God must be a very good God. He was cured, something that he had never heard of before. He decided to dedicate his life to the public health system that had saved him and started to work dispensing drugs at the Public Pharmacy to help others in need. The most amazing thing he shared was that when he was cured he did not know what to do with his life. He was so ready to die that he felt disoriented when he realized that he just got his life back. I was overwhelmed with how he felt and how well he was using his life.
As I returned to my chair overwhelmed with such an amazing story a person behind me asked if it would take long for things to be back to normal. I shared that no one knew but that we should sit there and wait. I shared my story and after he consoled me with a brain tumor survival story I asked him what he was there for. His name was Daniel and he was there to pick up diapers for his 18 years-old daughter who had cerebral pausing. I was humbled by how blessed my life is and how lucky I was to meet these incredibly good people.
Daniel shared that at one point he was returning home and could simply not find consolation for the life he had. He started walking in the opposite direction to his house for hours and then decided to go back and take care of his daughter as best as he could. He shared with me the same line I've shared right after I was diagnosed - we do not choose many of the things that happen in our life but we always choose how we react to them. He shared that the cure for his mental barrier was to always look at the positive side of things with humor and optimism.
I have to confess that yesterday was not an easy day for me, probably the first time since I rebounded from my diagnostic, that I was not very positive. As if in anticipation for my first stomach sickness since I started on chemo - I stupidly did not take my anti-nausea mediaction with my chemo drugs as in my last cycle I did not in my last day and did not get sick - I was feeling a little down. After learning these incredible stories, as if God had created this day especially to pick me up, I am back to being my positive person.
There are essentially two ways of looking at the world. The first choice is to believe that God is always on your side and that whatever happens to you has a good reason to be. The second choice is to believe that the world is conspiring against you and that no matter how hard you work and how faithful you are you always or will eventually get dealt a bad card.
When I was working at my first full-time job I was feeling frustrated and my father as usual gave me a great book and the following story hand-written in it to help me understand my situation (I hope I did not butcher the story, this is what I recall):
Phidias, Greece's most famous sculptor, was hired to sculpt a statue of Zeus at the top of the Parthenon. After months working on it he was finishing the work by sculpting the back of the statue. Greece's king approached him and asked why he was investing so much time on the statue's back, in his eyes the work was done since no one could see the staue's back from the ground. Phidias then replied "The Gods can see it".
When I face a mental barrier my cure is to always believe that things are happening for a reason. It is hard to have Job's patience but any time I face adversity I try to think of Job. When we put things in the right perspective we can always pick ourselves from the ground, so pick yourself up when you are down and see the good side of your life's events. Things will always end well, if you are not well the end has not arrived.

Live for Today Without Mortgaging the Future

People have different interests and ways of dealing with life. Machiavel`s lesson on politics, "the ends justify the means", is applied by everyone on a daily basis at a personal and professional level.
Before I ramble over my non-cancer related experiences I want to share a key lesson I've been learning through this journey with brain tumor. My timeline changed and I became a lot more mission oriented, questioning very strongly everything that deviates fom my personal values. This of course has implications because the world continues to operate under its normal course.
My sense of urgency, which was already accentuated, became even more intense. I became less patient and more action oriented, but the world still operates at the same pace it did before my brain tumor. While time became a lot more precious to me it continues to have the same value to others. All of a sudden I became very sensitive to how I use my time but of course my life is not just me, my life is everyone that surrounds me - my family, my friends, my co-workers. How other people use their time and how it affects mine became very important and I went through a big adjustment of accepting that we all have different views on priorities and therefore use of time. What may be in my view the obvious and most productive course of action and time may not be the same to others.
As an example I will share my experience at home. Accepting our imperfections at home and compromising to keep the family happy is key for a healthy family life. While waiting for anything at home became a huge exercise of patience for me I had to re-learn that waiting is a fact of a married life. I had always been and became even more impatient with my wife when she is running late due to the traditional chores that women submit themselves to for social occasions and to look great. I am very lucky to have a very commited wife that is patient enough to show me the way, and I am applying these lessons again in other spheres of life where I was losing my patience.
Life is a constant exercise of revising priorities and compromising to achieve what gives us the most satisfaction (or like I learned with Uday Rajan, my managerial economics professor, utility). We are social creatures and constantly deal with the natural tension of doing what is good for us as individuals and what is good for us as family members and members of society.
Throughout history we created mechanisms to deal with these tensions in every sphere of life:

• Family Ties: the commitment to accept the imperfections we all have as humans and that become significantly more evident with our close relationships. This applies particulalry to our parents, wife and kids;
• Religion:  the commitment to accept a view of the world and life that unites groups around faith and our existential questions about what life is about, what should be a commitment to Humanity;
• Corporations: the commitment of many people around a cause and an economic purpose that creates value for all stakeholders. Of course most people think it is just a company with job opportunities but in fact it is much more than that;
• Government: a framework created for people of the same culture, or in heterogeneous countries like Brazil and the US, different cultures with evolving values, that need a common legal framework to stay together and act as a giant group of people;

All these organizations are created to protect us from the potentially destructive powers of ourselves when we act exclusively in self-interest. It is no accident that the first thing Adam did once God created him was to break a rule. This is a key lesson from the Old Testament about the nature of humans. For the agnostics Emmanuel Kant shares the same belief under a different light. However individuals are also the motors of progress and have many great qualities, so despite our flaws we can really be great.
Most people think that one person can't change the world. Nothing could be further from the truth, in fact the world only changes when individuals decide to change it. All it takes is one person to organize many and change the world. Brazil just bred another amazing example of an enlightened person. Joaquim Barbosa, the Supreme Court President, just lead the trial and conviction of several high ranking politicians. The first black man to lead the Supreme Court started his life as a janitor and studied his way up to the Supreme Court and he created a spark that I hope will significantly change this country for better, illustrating that from now on the Rule of Law applies to everyone in Brazil.
Despite all the mechanisms and lessons from others many people still live a life that they do not enjoy, hoping to compensate for it later. There are examples of people that abandon everything when they uncover cancer. I heard a case of a guy that was diagnosed with cancer in the UK, quit his job and family to make the trip of his life only to find out later that his diagnose was false. The key lesson here is that while we will certainly go through a drastic revision of priorities we should never forget that we might, and I really hope that most certainly will, live many years to come. My goal is to live another 62 years to break the 100 years-old barrier!
As an example many people take jobs for the money so that when they get older they can finally do what they like. This is to me one of the factors that leads to the increasing rates of stress that spills into other aspects of life. I was very lucky not to fall in that trap.
Early in my life I learned a great lesson. I once worked at a financial services firm where we all worked for the money. Me and many of my peers worked from 7AM to 10PM to make a big fat bonus (when you are 22 years-old a big fat bonus is neither big nor fat). Interestingly after dedicating a whole year to this insane schedule the market went South and the company closed. The partners of the firm founded an Asset Management company and invited me to join it. My "interview" was at 8PM (who interviews at 8PM?) and I was left with the same message, "you are going to work very long hours, maybe more than before, but the money will come". I left and went to a friend's house to watch a big soccer game. I spent the evening there having a lot of fun and enjoying my friends' company. The very next day I declined the offer, I realized that if I worked there I would have missed precious moments with my friends, that my time would not come back.
I continued working at my job at the time where I learned one of the most profound lessons in life. One of the partners at that firm once taught me that we need to work on what we like and believe in, the money will follow. Today this company is a case study in the services industry, one of the first Brazilian service companies to go global, and its culture continues to be a winning culture.What is also interesting about this is that my working hours were not that different, I reduced my hours from 14 to 12 hours, but I felt a much bigger sense of purpose and came home happy every single day.
The key lesson here is to avoid waiting until you are old to be happy. However for the newly diagnosed don't think you can change the world in a few days and compensate for your life's poor decisions in a few days. Short-term decisions always lead to bad outcomes, the world is plagued with it at several levels:

• Government leaders making bad decisions to win elections;
• Public company leaders making bad decisions to hit the quarter;
• Small businesses owners evading taxes by not recording sales and profits;
• People commiting crimes to get money they did not earn.

My key lessons for cancer patients and the accidental readers here are:

• Be honest: never lie to others or yourself, we all have the right to be happy and enjoy life but that responsibility is 100% ours. Being honest will always help us to prevent regreting decisions;
• Be patient: Work hard to change the things you can change, accept the things you can't change and be wise to know the difference between them;
• Be mature: accept that people will look at you differently, being closer to death accelerates our maturation process but don't expect others to be as mature and that does not make them worse;

Thanks to all my family members, friends and co-workers that blessed me with their friendship, lessons and advice at every juncture of my life, I hope I use our lessons well. To those that don't know me I hope you can constantly learn and follow the three simple principles above, life should be that easy.

Life Expectancy - Forget About It!

Models are lies that help us better understand the truth. This simple statement has given a complete new meaning to my life and helped me understand much better what statistics and faith are about.
I am an engineer, by heart and education, and as such I like to quantify everything. However I lacked philosophy in my life until I realized that I was not immortal.
My father, in contrast, is a theologist, a philosopher, a tireless reader who can separate wisdom from ignorance in a second. He loves to say that statistics is the prostitute of science. That would always come as a big blow to my quantifying ears but today I understand what he means.
When poorly used anything can be prostituted, with all respect to the oldest profession on Earth.
This week I talked to a saddened mother that was told by several doctors that her son had X, Y or Z years of life. When a company advertises a product claim it needs to place disclaimers everywhere, yet when doctors tell patients how long they expect the patient to live there are no disclaimers. What a non-sense.
About Science (Statistics)
All the statistics doctors share are based on clinical studies, and therefore are an extrapolation of what has been observed over a population not controlled for age, tumor size, location etc., and most importantly, the individual's own characteristics.
Patients insist in asking doctors life expectation stats and under pressure doctors feel compelled to provide an answer, particularly the less experienced ones. This is a common mistake in every profession. We are trained in school that if we don't provide an answer we are wrong, so most professionals feel more compelled to answer a question with a wrong answer than to say "I don't know", as the latter might be perceived as lack of competence.
If I were to live by a set of poorly used statistics let's see what would be different in my life:
- Biking: every day a person dies in São Paulo in a bike accident. I'd better stop riding if I want to escape death in a bike accident in São Paulo, a much more likely death cause than brain tumor;
- Driving: every day more than one person dies in São Paulo in a car accident. I'd better stop driving if I want to escape death in a car accident in São Paulo, a much more likely death cause than brain tumor;
- Eating: I once heard that the more we eat the shorter we live, as every time we eat we produce free radicals that make us age biologically faster. But how could I survive without food? Isn't this an example of beating up the dog to kill the fleas?
- Drinking: This one I can live without, people that drink are likely to live less, but I have to say that my College experience would have been completely different if I didn't drink. Today I only drink non-alcoholic beer, but nonetheless drinking is part of our western social fabric and the socialization that happens around drinks is part of our Modern Western Society;
- Having Kids: had I know that I had a brain tumor 10 years ago, the likely age of my tumor, I would not have had kids. How sad would my life be without my girls, and would I ever be willing to sentence my wife to a life without kids?
About Philosophy (Religion)
I was never religious but growing up in a Christian family I was of course heavily influenced by Jesus Christ. Right before my surgery in Montpelier we were driving to Milau and spotted a small village called Le Caylar where we stopped to visit an old castle. When we got to the village a little cat came to us and meowed profusely. We followed the cat, the picture below is a proof that this happened!

As we followed the trail we arrived at a statue of Jesus, something that had a profound meaning to me, not so much for the circumstances that lead us there - a cat leading a hike - but for the inspirational effect that made me put in perspective how little I was suffering relative to what Jesus suffered when he was crucified.

Religion is not a literal translation of texts to prove who is right and who is wrong, it is a philosophical background that helps give meaning to life from an individual and social point of view. Humans thrived in the world both for their individual abilities and for their ability to collaborate. Religion provides a framework that leads us to favor a group at the expense of the individual, and a lot of times that is necessary. Providing a helping hand is good for us and Religion has been historically a great motivator to make us collaborate towards a common goal.

About Purpose
What could have made Jesus endure so much? How could a man carrying a heavy cross in a dry, cold land while being tortured later be described as forgiving so many people?  Jesus knew that he was God's son. According to Jesus himself so are all of us. Whether Jesus was truly or not the Messiah that came to rescue the Jewish people from apocalypse is completely irrelevant, the matter of fact is that a 33 years-old man born 2012 years-ago completely changed the world. I already outlived Jesus by 5 years and feel like I have so much to do! If you can live and believe that you are the son of God you will have the strength to endure anything, you will never give up. And the best way to change the world is by being a great role model. No, this is not an attempt to save souls, just a demonstration of the power that faith has in life when well used.

About Our Social Fabric
Christianity was spread throughout Europe as a unifying force for the Roman Empire. As diverse people as Huns, Gaelics, Brits and Saxons resisted the Roman Empire there was a need to create something in common for all these tribes to keep the Roman Empire united, and Christianity was used as a unifying force.
Years later the Dark Age came and the Roman church tried to burn anything not endorsed by it. I was once in Turkey and a friend I met there explained to me how the Ottoman Empire saved several pieces of ancient western history from being burned as Europe was immersed in ignorance and intolerance. Centuries later we are once again engulfed by religious fundamentalism in many different fronts, the most visible being obviously Islamic Fundamentalist Terrorism.
We need threads to keep us together as social organisms, to compound our individual abilities with the power of collaboration. National identify, race, gender, religion and political views have been traditional forms of social fabric. We need to accept that we are both individuals and pieces of a social fabric, but we cannot let our social fabric overcome who we are as individuals.
If we live a life believing that society is the sum of the individuals and refusing to believe that individuals are fragments of society with no control over it we can live with a whole lot more purpose.

Conclusion - Forget About Life Expectancy, Focus on Driving Your Life
As I confronted death for the first time I could not accept that we are merely a set of chemical reactions living among many others. I was told by a neurologist that "today we know that the separation between brain and mind does not exist, we are just the brain". What a sad way to see life.
In the car of life we can pick two seats, the passenger seat or the driver's seat. We can also drive by looking at the rear-view mirror or looking forward and picking the roads that take us to where we want to go. Statistics are simply a way to try to predict the future based on past observations. When we resign ourselves to live by statistics we condemn ourselves to the passenger seat and the rear-view mirror, by definition.
Don't give up on life, we don't know what is going to happen to us and therefore should always strive to do the best with the cards we are dealt. The fact that we don't control most of what happens in our life does not mean that we should resign ourselves to doing nothing, to a constant state of apathy.
The minute we quit is the minute we die, and life is too precious for us to quit before dying. Never let a doctor sign your death sentence before you die, live like there is no tomorrow but always remember that there is a pretty good chance that you will still be around tomorrow to see what you are doing and that your legacy might last over 2000 years if you are good.

One Year With Glioma

Today I complete one year since I woke up inside an Airport Ambulance on my way to the hospital. This one year has been the scarriest, most intense and fullfilling year of my whole life.
I have learned more about myself and life in general in one year than I have learned throughout my entire journey on this planet. After thinking about what to write to "celebrate" my first birthday with brain tumor I decided to share the lessons I learned in this intense year. These are not set in order of importance but they are all important to me.
1. The Importance of Faith - I used to believe in God`s existence, but now I am sure He exists. Being closer to death made me as close to life as I have ever been. Life is a miracle and the sequence of events that led me to write this can only be explained by God's desire for me to be here;
2. The Importance of Family - Nothing has been more important through this journey than having the comforting presence of my wife, daughters, parents, in-laws and relatives throughout this journey. If I needed a strong reason to fight for my life they have given it to me, and the relentless optimism with how I face my condition is only possible because I get re-energized every time I see the smiley faces of my daughters when I get home.
3. The Importance of Friends - I have always kept a strong connection to my friends. The love and support they have given me has just been overwhelming (pause to cry). The way in which Livia and my College friends sent me to France for surgery (Força Patrick) has simply been the most incredible demonstration of affection I have ever received and I will be eternally grateful for the energy boost I got from it, not to mention all the incredible messages and support from all the friends I made in the US and the new friends I made at work in Brazil, who have been uncodittionally supportive.
4. The Importance of Fellow Brain Tumor Warriors - When I was at my lowest point right after being diagnosed I was picked-up from the ground by complete strangers. Liz (Liz Army), Jim Hewitt (RIP brother, I have not met you but you have helped save me), Scott Vickroy and others I have met through the Internet helped me understand that I might still have a lot of life ahead of me. While none of us are exactly sure about how much, we all ought to live life at its fullest until our time comes.
5. The Power of the Digital World - the Internet has helped me connect to very importamt people, has given me access to scientific papers that have helped me make critical decisions with the help of my doctors and has enabled me to help others, the original intent of this blog. I believe we are entering an era where people with common interests will finally be able to leave their differences behind and connect to work for the common good. We ought to leverage the knowledge sharing power of the Internet and digital information to accelerate the scientific gains in the fight for a disease free, long and great life for Humanity.
6. The Importance of Public Health Care - I had never been a supporter of big Government or Public Health Care, but there are things we need to socialize in order to create a strong society. As the IRS says in front of its building, "Taxes are the price we pay to live in a civilized society". I was saved by the Brazilian Public Health Care System, where I was diagnosed and which now provides me with "free" (I do happily pay taxes) chemo drugs, and by the French Public Health Care System, where I was operated at a significantly lower cost that it would have cost me to be operated in Brazil, even with Insurance. After reading stories about the personal financial havoc that Cancer can cause to people in the US I had to rethink my views on Public Health Care. Public Health Care is bad until we find ourselves caught in the sad side of the debate. Strong democracies socialize gains that benefit society in general, such as Education and Health Care, and privatize losses to those that have caused them. We ought to rething the direction in which the world is going, where Banks and Companies are rewarded with "Too Big to Fail" policies, socializing losses and privatizing gains to risk takers and bad managers, while Health Care and Education, the foundation for any strong society, become secondary.
7. The Liberating Power of Knowledge - Brain Tumor has kept me away from my old passion, triathlon, and I had to find a new outlet for my energy. I have been reading more that I have ever read in my whole life. My father has always been a role model, a self-made man that reads an average of 3 books a week and who instilled in me the passion for knowledge. I have never studied so much since I was a student, and I love every new discovery I make, from the History of Cancer, the History of Medieval Europe, Capitalism and the power of Democracy combined with the Rule of Law. I am now reading a book by Fernando Henrique Cardoso, the Brazilian President that transformed this country into what it is today. His "Brain Tumor" was exile. A fervorous Brazilian, FHC was extradicted during the Military Government and risked his life to come back at age 37 (my age at diagnosys) to help fight for a new Brazilian democracy. His defining characterisitic is his focus on the present with a relentless optimism and vision of how we can make the future better, because the future will always be different from the past.
8. Dealing with Suffering - I had always been a "chicken" when it came to dealing with bad news, such as death and disease. I have learned to live with both in a way that continues to surprise me. One of the first things I did to "test" my brain after surgery was to speak to unemployed executives going through Out-Placement at my father's office. The topic was "Every Executive has his Journey in the Desert". The types of journeys included things such as being laid-off, going through divorce, going out of business and losing a loved one. I was there to talk about dealing with a challenging health condition, and this was set to help me understand how I would react to public speaking as I knew I had a big one coming at my real job. It was the best feeling ever, I was fine to speak in public and most importantly was finally able to empathize with people that were also in very challenging situations. Having Brain Tumor invites people to talk about their problems, and the advice I always give is the same Winston Churchill gave England during the Second World War: "never give up, never, never, never!" Everything will be fine in the end, if things are not fine you have not reached the end.
9. The Importance of Priorities - Life is too short and unfortunately we cannot do everything we want. In order to enjoy all aspects of life, from family, friends, work and personal hobbies, we need to set limits, or one will take over the others. We will never have enough time to do everything we want, so being choiceful about where to invest our time is critical to a fullfilling life.
10. The Importance of Curioity - Never take answers for granted, often times things are done in certain ways due to a sequence of events rather than because it is the best way to be done. A mind that is focused on making things better will always find opportunities for improvement, even if you are an Engineer in search for answers on brain tumor. If you can't find an answer remember that Human Progress has only been possible because some people decided to never quit until they found answers to their questions.
Thank you all for the support and love given to me, I hope these thoughts help me give a little bit back to you of all you've given to me in the past year.

It's a good day to be alive!

Today was a very good day. Woke up early to go to my first post-glioma race, after a long night where I finished my first analytical research on brain tumor. For those than know me well there is nothing like sports or analytics to get me going.
I am creating a new blog based on my "scientific" discoveries, I want to generate insights for students or doctors that are getting into brain tumor research, I hope I can help open new avenues for research on brain tumor. This new blog will be called "We can think with glioma".
I ran a 10k with a good old friend of mine who was also a great runner but got off the wagon after getting married a few months ago. It was an incredible day, perfect weather, about 8,000 people running and a great route close to downtown São Paulo (Pacaembu). This was the first "run-only" race I've done and the energy was incredible, I think I am ready to set more ambitious plans, and I will create a sports blog to talk about my goals and achievements called "We Can Run With Glioma".
On Friday I had dinner with a good old friend. I was set to have beer with him nearly one year ago but disappeared and never got back to him with a meeting spot. I was hospitalized right after having a seizure and when he finally got hold of me I shared that I was diagnosed with a brain tumor. While stunned by the initial shock, he and his mom, who I am yet to meet, always cheared me up with very cool messages.
My friend shared with me a video that captures my feelings in a way I would have never been able to describe, check this out: http://www.ted.com/talks/lang/en/stacey_kramer_the_best_gift_i_ever_survived.html
This is the same friend that shared with me 12 years ago a phrase I repeat until today when someone tells me they don't have time - "What separates us from death?".
He shared a moving story about a relative diagnosed with a very aggressive form of cancer, one of those with poor recovery prospects. I am sure I am butchering the details but I hope I got the essence. They consulted a psychologist to understand what might happen in that person's mind with that prognostic, and he shared that it depends on the person's attittude towards those last days.
Some people have the best time of their lives in that period, telling people they've dettached themselves from how much they missed and love them. They would also check-off their bucket lists or simply reject anything that was not fully endorsed by their hearts.
On the other hand some decided to die right there, living a life of misery and pessimism, forgetting that they still had precious days. months or even years to do the best they could with their time left.
What a profound impact attittude can have on anyone's life, wether with or without cancer. In Steve Job's biography he shared that he always had a feeling that he would die early, so he decided to use every precious second he had to change the world. What a success!
I really think we should all live like this before we are reminded of how much time we've divested making poor choices or simply not following our hearts due to lame excuses. We all have a mission or more in life, your heart will tell you where to go, be open because an unwanted experience -- frightening, traumatic, costly -- can turn out to be a priceless gift, just like Stacey Kramer shared. Thank you Stacey for sharing your experience, you have made the world a better place by choosing optimism instead of pessimism.
One of my favorite Esopus paraboles is the one about the fox and the grapes. The fox really wanted to catch some grapes that were too high for it to reach. Instead of figuring out a way to get to those grapes the fox told itself it didn't want grapes anymore.
Always remember that pain is temporary, quitting is forever, like my Mount Lebanon Caffeine and Cycling Club friends had taught me. Those nuts just finished the most painful bike race I've heard off (seemed worse than The Dirty Dozen!), the Diabolical Double. Hats-off to you my friends, I hope to join you again, maybe in the same shape you have seen me last. Yesterday I biked for about an hour searching for hills that replicated the same painful experience of climbing Mount Washington. I dearly remember when I climbed Mount Washington for the first time, then followed Liberty Ave. all the way to the Zoo, going into the long observatory climb to finally bonk at Greentree! Luckily those guys had a cereal bar to share with that inexperienced Brazilian that showed up to bike with them for the first time.
What a great time, I will never quit!