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!
Saturday, December 22, 2012
Tuesday, November 20, 2012
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.
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.
Saturday, October 13, 2012
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:
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:
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;
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.
- 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;
Friday, September 7, 2012
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.
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.
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.
Monday, July 9, 2012
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.
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.
Sunday, July 1, 2012
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!
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!
Saturday, June 16, 2012
Saving for Retirement with Glioma
Liz, the young 32 years-old inspiring leader of The Liz Army (check Survival Stories to learn more about her), asked a question that is so relevant not only to us living with a gun pointed to our heads but to everyone that saves money for retirement: should we or should we not save money for retirement?
In fact by total coincidence when Liz asked the question I was having the same discussion with my wife.
In my opinion every responsible person that has enough to do so should save money for a rainy day, which can come in the form of a health issue, a job loss or other bad things. On the other hand savings can open new opportunities, such as making the trips of your dreams, building the house of your dreams etc.
However saving for retirement to me today is an obsolete concept. In a day and age when people that are 75 years-old finish Ironman races, run Marathons, run large corporations etc. I wonder what is retirement good for when you can be productive your entire life.
Obviously age brings its effects, such as gray hair, wrinkles, lost mobility, eyesight, strength etc. However saving for a day when you can finally do nothing does not make a lot of sense to me. Why defer your dream for 30 years when you can chase your dreams today?
I had an uncle that worked like a dog his whole life and had very tough ups and downs, from being arrested and tortured during the Brazilian military Government because he was a "communist" when he was just a student leader chasing new ideas. Once he begun working he eppitomized capitalism. Working for an energy company he made his way from rags to riches, but when he finally decided to do more of what he liked (i.e. travelling) by retiring, it was too late. He was diagosed right after retirement with lung cancer and is now watching us from Heaven. He accomplished a lot professionaly and personaly, raising my cousins who are both great guys, made a trip to China to see communism in action and made a lot of people around him better people with his great heart. Nonetheless he enjoyed only a small portion of the fruits of his labor.
On the other hand you have people like my dad, who doesn't save for retirement and says that he is going to work until the last day of his life. My dad loves what he does and it always feels like a day away from work to him is a day wasted.
There are two phrases that summarize what I think about this topic:
- Find a job you love and you won't have to work for the rest of your life
- Life is what happens to you when you're busy making other plans (this one comes from John Lennon, I just learned this one from Kotler's book Winning at Innovation)
In the field of economics there is a concept called "utility", which in essence is an equivalent to money except that it doesn't have a value. What to me is worth 100 bucks might be worth as little as 5 or as much as 1,000 bucks to someone else. Instead of calling this money "bucks" a teacher I had called it "utils".
If knowing that having a safety cushion brings you more utility that investing in your dream trip today save enough to bring you peace of mind before you make your trip. If you realized that saving for when you turn 80 doesn't make a lot of sense either go ahead and make your trip!
I hope this helps everyone that wonders if they should save for retirement. From a strictly financial stand-point saving for retirement makes the most sense as the Government provides tax incentives for those that save money in retirement accounts, but if you are saving but deferring your dream strictly for tax gain purposes I would reconsider the decision. Money is a means, not an end, but a lot of times it can be an end and might lead us down a wrong path.
I just finished watching Margin Call, a good depiction of the mortgage backed securities market melt down. In a way the movie helps illustrate how a bank, supposed to transfer money from those that have too much and don't have anything productive to do with it, to those that need it and want to produce something with it, of course at a cost, all of a sudden turned into a big gambler through leverage. This has lead solid century-old institutions to disappear in a blink of an eye because instead of being a good resource allocator the bank became a blind money chaser, investing in securities they barely understood.
Think about what moves you, and if saving is a requirement to do what moves you, save it now. But don't differ your dreams as life expires and we have to live it while it lasts.
But remember that you might have decades after tomorrow, so be careful with living as if there is no tomorrow because I really hope we all have thousands of tomorrows!
In fact by total coincidence when Liz asked the question I was having the same discussion with my wife.
In my opinion every responsible person that has enough to do so should save money for a rainy day, which can come in the form of a health issue, a job loss or other bad things. On the other hand savings can open new opportunities, such as making the trips of your dreams, building the house of your dreams etc.
However saving for retirement to me today is an obsolete concept. In a day and age when people that are 75 years-old finish Ironman races, run Marathons, run large corporations etc. I wonder what is retirement good for when you can be productive your entire life.
Obviously age brings its effects, such as gray hair, wrinkles, lost mobility, eyesight, strength etc. However saving for a day when you can finally do nothing does not make a lot of sense to me. Why defer your dream for 30 years when you can chase your dreams today?
I had an uncle that worked like a dog his whole life and had very tough ups and downs, from being arrested and tortured during the Brazilian military Government because he was a "communist" when he was just a student leader chasing new ideas. Once he begun working he eppitomized capitalism. Working for an energy company he made his way from rags to riches, but when he finally decided to do more of what he liked (i.e. travelling) by retiring, it was too late. He was diagosed right after retirement with lung cancer and is now watching us from Heaven. He accomplished a lot professionaly and personaly, raising my cousins who are both great guys, made a trip to China to see communism in action and made a lot of people around him better people with his great heart. Nonetheless he enjoyed only a small portion of the fruits of his labor.
On the other hand you have people like my dad, who doesn't save for retirement and says that he is going to work until the last day of his life. My dad loves what he does and it always feels like a day away from work to him is a day wasted.
There are two phrases that summarize what I think about this topic:
- Find a job you love and you won't have to work for the rest of your life
- Life is what happens to you when you're busy making other plans (this one comes from John Lennon, I just learned this one from Kotler's book Winning at Innovation)
In the field of economics there is a concept called "utility", which in essence is an equivalent to money except that it doesn't have a value. What to me is worth 100 bucks might be worth as little as 5 or as much as 1,000 bucks to someone else. Instead of calling this money "bucks" a teacher I had called it "utils".
If knowing that having a safety cushion brings you more utility that investing in your dream trip today save enough to bring you peace of mind before you make your trip. If you realized that saving for when you turn 80 doesn't make a lot of sense either go ahead and make your trip!
I hope this helps everyone that wonders if they should save for retirement. From a strictly financial stand-point saving for retirement makes the most sense as the Government provides tax incentives for those that save money in retirement accounts, but if you are saving but deferring your dream strictly for tax gain purposes I would reconsider the decision. Money is a means, not an end, but a lot of times it can be an end and might lead us down a wrong path.
I just finished watching Margin Call, a good depiction of the mortgage backed securities market melt down. In a way the movie helps illustrate how a bank, supposed to transfer money from those that have too much and don't have anything productive to do with it, to those that need it and want to produce something with it, of course at a cost, all of a sudden turned into a big gambler through leverage. This has lead solid century-old institutions to disappear in a blink of an eye because instead of being a good resource allocator the bank became a blind money chaser, investing in securities they barely understood.
Think about what moves you, and if saving is a requirement to do what moves you, save it now. But don't differ your dreams as life expires and we have to live it while it lasts.
But remember that you might have decades after tomorrow, so be careful with living as if there is no tomorrow because I really hope we all have thousands of tomorrows!
Wednesday, June 6, 2012
Human Experiment - Exercising During Chemo
One of the most important things I learned is how little we know about brain tumors. The more I read about it the more conflicting information about what can and can't be done during treatment I find. One of the most frustrating ones relates to exercising during glioma treatment.
While most neuro-surgeons say no to exercise as it might induce seizures, onchologists encourage exercising for various reasons. I therefore decided to become an experiment to validate or not which route to take. With a sample size of one this might not be statistically significant but hey, someone has to start. If someone wants to join this experiment please sign-up to my self-serving clinical trial.
This week I am on chemo treatment and decided to exercise, completing my first 10K run on Tuesday in under 50 minutes, my old training pace. I signed up for a 10K race in 3 weeks and kept thinking of how emotional I might become when I cross the finish line, but in a much less glamorous fashion I ran 10K on the treadmill and was just as happy to finish.
If biking was my great feat a few weeks ago, I added running to the list. To make it even more exciting my wife was just as excited with my accomplishment, which made me twice as happy.
In 3 weeks I have an MRI, I hope combining exercise and chemo might work. It seemed to work for Lance Armstrong, why not follow his lead? Once again he set the standard and won Ironman 70.3 Florida.
What an example to be followed! Mental toughness, sense of purpose, goal setting, planning ability and lack of fear, this seems to be a decent recipe for success if I could summarize what I see in Lance.
Regardless of what we accomplish we should strive to chase our dreams, and mine is still to finish an Ironman when I turn 40, no matter what I face along the way. To accomplish big things we need to have big dreams, and this is my big one. I hope this makes you dream big too and chase your dreams, wether just a 10K run to trully changing the world through your unique talent. God has given every one of us a gift, find what is your gift and use it. If you don't know what is your gift keep experimenting, I am sure you will find it!
While most neuro-surgeons say no to exercise as it might induce seizures, onchologists encourage exercising for various reasons. I therefore decided to become an experiment to validate or not which route to take. With a sample size of one this might not be statistically significant but hey, someone has to start. If someone wants to join this experiment please sign-up to my self-serving clinical trial.
This week I am on chemo treatment and decided to exercise, completing my first 10K run on Tuesday in under 50 minutes, my old training pace. I signed up for a 10K race in 3 weeks and kept thinking of how emotional I might become when I cross the finish line, but in a much less glamorous fashion I ran 10K on the treadmill and was just as happy to finish.
If biking was my great feat a few weeks ago, I added running to the list. To make it even more exciting my wife was just as excited with my accomplishment, which made me twice as happy.
In 3 weeks I have an MRI, I hope combining exercise and chemo might work. It seemed to work for Lance Armstrong, why not follow his lead? Once again he set the standard and won Ironman 70.3 Florida.
What an example to be followed! Mental toughness, sense of purpose, goal setting, planning ability and lack of fear, this seems to be a decent recipe for success if I could summarize what I see in Lance.
Regardless of what we accomplish we should strive to chase our dreams, and mine is still to finish an Ironman when I turn 40, no matter what I face along the way. To accomplish big things we need to have big dreams, and this is my big one. I hope this makes you dream big too and chase your dreams, wether just a 10K run to trully changing the world through your unique talent. God has given every one of us a gift, find what is your gift and use it. If you don't know what is your gift keep experimenting, I am sure you will find it!
Sunday, May 27, 2012
Overcoming Fear - The Secret of Life
One of the biggest challenges for humans is that with our ability to think we developed a deep need to plan for the future, or at the very least minimize risks associated with the future. When I say risk I mean uncertainty as the word risk can take us into totally different universes, from trivial dangerous situations to really bad things. So when faced with potentially dangerous situations we create mechanisms to minimize risks. This has lead us to create mechanisms to try to minimize the uncertainty from all sorts of unexpected events, creating large industries and products such as the financial industry with products like insurance, retirement planning and financial derivatives, the pharmaceutical industry and anti-anxiety drugs, the military industry and weapons, the consulting industry that tries to help us understand what the future will be like and so forth,
all of which to give us a false idea that the future is totally in our hands. However the future, as I learned the hard way, is much further out of our control than expected. .
I am not trying to advocate that planning is not important but quite the contrary, I believe that to live a fully productive, healthy life we need to overcome fear and manage the risks associated with everything we do.
Let me recap what I have done in the last 10 years, all of which with an unknown brain tumor inside my head:
- Quit a great job and sold a fully paid car and apartment to get an MBA in another country (moved from Brazil to the US)
- Left the comfort of being close to family and long-lasting friendships to start from scratch in a new country
- Graduated from the best MBA program in the world (sorry Harvard, Stanford, MIT etc. Carnegie Mellon is the best), where I met amazing people and made long-lasting friendships
- Got married to my wonderful wife and had two amazing daughters
- Decided to stay in the US after graduating and started a new career in Marketing, meeting and working with amazing people and making great friends
- Purchased a house, obviously borrowing lots of money
- Made great new friends and got closer than I had ever been to my American side of the family
- Completed 2 seasons playing in an adult soccer league
- As my knees got destroyed by soccer I decided to ride bikes, encouraged by my "older brother" and my uncle
- Joined the Mount Lebanon Caffeine & Cycling Club, where I made great friends
- To balance all this leg work I started swimming
- I then decided to do triathlons,swimming in 55 degrees water at my first short-triathlon and moving up to complete 3 Half-Ironman events
- Quit a great job and sold two fully paid cars and a partially paid home in the US to go back to Brazil and start-over, now more safely working with the same company I worked at in the US
- Worked and partied hard on every step of the way
Looking back I wonder what my life would be like if I had known that a brain tumor was growing in my head. This is not a self-celebratory blog, it is just to highlighted that my risk profile would have probably been much different. My challenge now is to not let fear overcome my life, and yesterday I reached a milestone: I left the safety of my bike trainer and faced the mad traffic of the city to ride my bike on the road, by myself!
I never thought that such a trivial, taken for granted activity would feel so liberating. I felt like I have finally overcome my fear of having seizures, which I hadn't experienced since my first one last year. Riding where I was I should have been much more worried about traffic, bike thieves or getting lost, but those were simply not in my risk checklist, just like my brain tumor wasn't in my risk checklist when I left Brazil in 2001.
At every stage in life we face decision time, and we should never let our fear of what might happen, which can quite frankly be an infinite list, overcome the joy and feeling of accomplishment that makes us all feel life is worth living and fighting for.
I hope you read this and stop worrying about what can go wrong, life can only be truly fulfilling when we find out how we can be happy if things go right, even if your idea of life going right is a mere bike ride.
Sunday, May 20, 2012
Evolution - Biology, Individual, Society and Me
I am about to finish reading "The Emperor of All Maladies", from Sidharta Mukherjee. What a spectacular book, probably the best I have ever read. I am now migrating to a non-cancer related book from Allan Meltzer, in my opinion the best economist/financial historian in the world, a teacher at the Tepper School of Business at Carnegie Mellon, ardent student and "biographer" of the US Federal Reserve, and most reasonable and knowledgeable defender of capitalism, democracy and the rule of law. His book is called "Why Capitalism?".
It is interesting to see how in the last 6 months I have read books that are seemingly so unrelated on the surface, such as "Neuroscience for Dummies" and "Why Capitalism?", but I see stricking connections on how we evolve as species, individuals and society.
I have found a new interest in biology and realized that I have to learn everything I learned in high school again. Science has evolved enough in the last 20 years that I see a need to go back to basics and study high-school biology to understand several things I learned about cancer. Oncogenesis, Tumor Suppressor Genes, Heat Shock Proteins and so forth, things that I feel a deep need to connect in order to understant what is happening to me and how the drugs I am taking help fight it. I have even formulated a few hipothesis that I feel a need to validate, but before I pose my questions I want to make sure I am not asking trivial questions.
One thing that became clear to me is that cancer can be as deadly as it can be resurrecting. As I studied Neuroscience I learned new theories on how we evolved as species from unicellular organisms to what we are today.
As unicellular organisms grouped themselves to perform tasks, the cells in the inner part of the group of cells faced very different environments from the cells exposed to the outside world. That created a need for cells to specialize. Of course cells, just like people, don't choose what they want to become biologically. Saying that a cell can choose what function to perform is as crazy as me saying that I decided to grow wings.
But the environment takes care of changing cells. Radiation, just to mention one known environmental factor that can change our DNA, and as a consequence the function of our cells, will create new cell functions, creatures and sometimes diseases. Evolution then takes care of the rest.
Imagine that at first all cells in multicellular organisms performed all vital functions. Then radiation hit the group and the cells outside the group could not produce energy anymore, but only filter radiation as cells inside the group focused on building energy reserves and "feeding" the outside cells. These cell groups, with the genetic stability provided by the radiation filtering cells, all of a sudden became more stable, creating a multicellular organism much better prepared to face the enviroment and survive. For another random reason DNA changed again and the inner cells were transformed in two groups, one specialized in digestion and another one specialized in energy storage for tough times. When food became scarce the energy storage cells provided the food for the other cells, enabling this organism to survive while others died in times of scarcity.
Of course this is an overly simplistic view of evolution, but if we think of ourselves as a self-regulated group of unicellular organisms we can look at cancer as a Coup D'Etat of certain cells.
In my case for some reason the cells that are supposed to protect my brain now think they need to take over it, messing up the balance of forces that turns a chaotic unicellular environment into a well organized single entity that is now writting this crazy story.
As I read Meltzer's book I realized how capitalism, in the form of market forces, democracy and the rule of law, performs in essence a self-regulating function for our society. We want a society where individual rights are preserved and never above the collective good. Democracy gives all players the right to choose what is best for society. When a group of individuals tries to take over control at the expense of others, the voters can expel that "cancer" and self-regulate the country, or the "body". This self-regulating mechanism of capitalist democracies has proven over time to be the most effective way to produce prosperity and improve the standards of living, no matter in which society it is implemented, from multi-cultural US or Brazilian societies, to the uniform and conservative Japanese or German societies.
Brazil is now living a wonderful moment. People of all classes are realizing that they can create opportunities for themselves. I met a person at a Trade Show last week, an entrepreneur that was turning garbage into reusable bags. I learned that his office was close to where I lived before I moved to the US. When I told him that I sold my house, car and gathered all my money to get an MBA in the US he said he got goose-bumps. To me that was such a no-brainer (no pun intended), but to a lot of people choosing instability over stability might be a tough choice. I, on the other hand, was blown away by this rags to riches young adult who saw in trash an opportunity to help the environment and make money.
Resurrecting after my brain tumor was just another example of how one can face adversity (or instability), adapt, evolve and move on, always on a path to become better than before. If we all try to become better as we face instabilty we will always strive as humans. Of course if I had the choice I would not have chosen to take the brain tumor road, but now that I am on it I want to come back home better than I was before, and so far I feel much better.
It is interesting to see how in the last 6 months I have read books that are seemingly so unrelated on the surface, such as "Neuroscience for Dummies" and "Why Capitalism?", but I see stricking connections on how we evolve as species, individuals and society.
I have found a new interest in biology and realized that I have to learn everything I learned in high school again. Science has evolved enough in the last 20 years that I see a need to go back to basics and study high-school biology to understand several things I learned about cancer. Oncogenesis, Tumor Suppressor Genes, Heat Shock Proteins and so forth, things that I feel a deep need to connect in order to understant what is happening to me and how the drugs I am taking help fight it. I have even formulated a few hipothesis that I feel a need to validate, but before I pose my questions I want to make sure I am not asking trivial questions.
One thing that became clear to me is that cancer can be as deadly as it can be resurrecting. As I studied Neuroscience I learned new theories on how we evolved as species from unicellular organisms to what we are today.
As unicellular organisms grouped themselves to perform tasks, the cells in the inner part of the group of cells faced very different environments from the cells exposed to the outside world. That created a need for cells to specialize. Of course cells, just like people, don't choose what they want to become biologically. Saying that a cell can choose what function to perform is as crazy as me saying that I decided to grow wings.
But the environment takes care of changing cells. Radiation, just to mention one known environmental factor that can change our DNA, and as a consequence the function of our cells, will create new cell functions, creatures and sometimes diseases. Evolution then takes care of the rest.
Imagine that at first all cells in multicellular organisms performed all vital functions. Then radiation hit the group and the cells outside the group could not produce energy anymore, but only filter radiation as cells inside the group focused on building energy reserves and "feeding" the outside cells. These cell groups, with the genetic stability provided by the radiation filtering cells, all of a sudden became more stable, creating a multicellular organism much better prepared to face the enviroment and survive. For another random reason DNA changed again and the inner cells were transformed in two groups, one specialized in digestion and another one specialized in energy storage for tough times. When food became scarce the energy storage cells provided the food for the other cells, enabling this organism to survive while others died in times of scarcity.
Of course this is an overly simplistic view of evolution, but if we think of ourselves as a self-regulated group of unicellular organisms we can look at cancer as a Coup D'Etat of certain cells.
In my case for some reason the cells that are supposed to protect my brain now think they need to take over it, messing up the balance of forces that turns a chaotic unicellular environment into a well organized single entity that is now writting this crazy story.
As I read Meltzer's book I realized how capitalism, in the form of market forces, democracy and the rule of law, performs in essence a self-regulating function for our society. We want a society where individual rights are preserved and never above the collective good. Democracy gives all players the right to choose what is best for society. When a group of individuals tries to take over control at the expense of others, the voters can expel that "cancer" and self-regulate the country, or the "body". This self-regulating mechanism of capitalist democracies has proven over time to be the most effective way to produce prosperity and improve the standards of living, no matter in which society it is implemented, from multi-cultural US or Brazilian societies, to the uniform and conservative Japanese or German societies.
Brazil is now living a wonderful moment. People of all classes are realizing that they can create opportunities for themselves. I met a person at a Trade Show last week, an entrepreneur that was turning garbage into reusable bags. I learned that his office was close to where I lived before I moved to the US. When I told him that I sold my house, car and gathered all my money to get an MBA in the US he said he got goose-bumps. To me that was such a no-brainer (no pun intended), but to a lot of people choosing instability over stability might be a tough choice. I, on the other hand, was blown away by this rags to riches young adult who saw in trash an opportunity to help the environment and make money.
Resurrecting after my brain tumor was just another example of how one can face adversity (or instability), adapt, evolve and move on, always on a path to become better than before. If we all try to become better as we face instabilty we will always strive as humans. Of course if I had the choice I would not have chosen to take the brain tumor road, but now that I am on it I want to come back home better than I was before, and so far I feel much better.
Sunday, May 13, 2012
Incredible Week with Family, Friends and Sports!
“The same way Escola Politécnica (my College) develops the professional, sports develop in people the key aspects of their character. It is where one learns to win and lose; it is where one practices solidarity all the time, it is where one nurtures respect for the opponent. AAAP (Athletics Association of Escola Politécnica) does that: it helps to improve the human being. That is why it is indispensable and helpful.”
Senator Mario Covas, January 19, 1993.
With this letter São Paulo’s deceased Senator, State Governor and democratic leader Mario Covas opened our Athletics Association honors book. Before my surgery my College friends, specifically from AAAP, with Livia’s magical touch and help, gave me an incredible gift, a Photo Album with many wishing well notes, pictures of our College days and demonstrations of love. For this and so many other reasons I love my friends and sports and feel so compelled and positive to keep battling my tumor. I was sent to France for surgery in the most upbeat state possible. Mario Covas, who also played basketball at my College, was a prominent political leader that helped shape Brazil’s current democracy. He also shared my passion for sports and hard-work.
This past week was probably the best week since I was diagnosed. If anything it was the closest to normal week since I was diagnosed, despite the fact that I was in my fifth chemo cycle, which continues to be light on my body and I hope aggressive on my tumor. As a matter of fact my tumor continues to remain quiet, not showing any signs of growth.
I worked really hard this week as we had a very important trade show, but my great week started with a conversation on Saturday that really energized me to exercise. I met a talented cancer biologist and shared my story with him and was curious to hear his opinion on exercising and cancer. He had an irrefutable argument to demonstrate that cancer and exercising go in opposite directions. In fact if exercising was a potential cause of cancer high performance athletes would have a higher incidence of cancer, but in fact it is just the opposite. Maybe that is why we have Race for the Cure, Livestrong and so many other fundraising organizations that use sports to help in the fight against cancer.
On Monday I called my “older brother”, it had been a while since we last spoke and I knew he would be excited with my progress. I also wanted to share the great news that I am back exercising, as he was one of the people that inspired me to get into biking, leading me into triathlon. He was very excited to hear the news; he is one of those people that just feed you with energy, cheering me up to work-out as I was. As soon as I hung up I started feeling a light pain in my lower back, which I immediately associated to my spinal bone marrow.
One of the first things my oncologist shared after my first chemo cycle was that I must have a great bone marrow as my blood was nearly unchanged after my first chemo cycle. When I felt the pain I thought to myself, talking to my bone marrow: “if this is how it is going to be I am going to teach you a lesson”. I hopped on my bike and rode hard for 30 minutes. The pain was gone.
Interestingly I felt like the chemo was making me handle exercising better. In fact the next day I went for a run and was on the treadmill for 30 minutes, which enabled me to run 6 km. In essence I ran at my pre-tumor training pace and didn’t feel a thing. I hadn’t run 6 km straight at that pace since I was diagnosed, and to do that felt great!
An interesting fact happened this week too: all of a sudden I started remembering several names from the past. From kindergarden friends I see in school pictures whose names I had long forgotten to my whole basketball team at the club I played for when I was 13 years old.
The brain is just incredible! I used to be a decent student at school and right after I came back from surgery a school friend of mine jokingly said, after I shared I removed a large chunk of brain, that we were finally playing on a leveled field. I never laughed so hard but little did he know that I uncluttered the brain as if I've done a total system recovery!
On Wednesday I went to the gym again after a long day of work and ran for 15 minutes to warm-up and lifted weights. To do that a day after a 6km run, to which I was not used to anymore, made me feel like I am ready to get back to business.
An interesting fact happened this week too: all of a sudden I started remembering several names from the past. From kindergarden friends I see in school pictures whose names I had long forgotten to my whole basketball team at the club I played for when I was 13 years old.
The brain is just incredible! I used to be a decent student at school and right after I came back from surgery a school friend of mine jokingly said, after I shared I removed a large chunk of brain, that we were finally playing on a leveled field. I never laughed so hard but little did he know that I uncluttered the brain as if I've done a total system recovery!
On Wednesday I went to the gym again after a long day of work and ran for 15 minutes to warm-up and lifted weights. To do that a day after a 6km run, to which I was not used to anymore, made me feel like I am ready to get back to business.
On Thursday I went to my oncologist for a consultation and he encouraged me to keep exercising, I felt so great!
After that I went to a party to celebrate my College’s Athletics Association Birthday. We probably had at least 20 generations of College grads there, every one of which at some point involved in building and maintaining AAAP. To watch how things have evolved made me feel really hopeful about Brazil’s future. The students are much better at fundraising, preserving the history of the organization and most importantly continue to demonstrate the importance of sports to build the character of those that love it.
To my surprise a current student knew about my story and was curious to know how I was doing. He sold to a friend of mine a sweatshirt from my College that I took with me to France for my surgery. My friends gave me it at my farewell party and the student found out about me when my friend picked it up. He was happy to see me well and every smile I get just feeds me up with energy. I got home at nearly Midnight, something I hadn’t done in a long time!
To my surprise a current student knew about my story and was curious to know how I was doing. He sold to a friend of mine a sweatshirt from my College that I took with me to France for my surgery. My friends gave me it at my farewell party and the student found out about me when my friend picked it up. He was happy to see me well and every smile I get just feeds me up with energy. I got home at nearly Midnight, something I hadn’t done in a long time!
One would think I would be tired on Friday after such a week, but I was feeling great! I worked hard all day and was meeting my cousins for dinner as one of them was at São Paulo from out-of-town. Before they met me at 9:30PM I decided to ride my bike on the trainer and hit another milestone: for the first time since I was diagnosed I rode for one straight hour on the trainer, which is even more painful than riding on the road as there are no downhill roads to rest or landscape to relax the mind.
On Saturday I woke up early and repeated my running/lifting routine, getting me ready to go out and walk around my neighborhood to get Mother’s Day gifts for my mom and Livia. It was a long week and we still had more ahead: we went to a friend’s twin-girls birthday party, dropped the girls at my mom’s house and closed the day with dinner with friends and once again a great time!
At the birthday party I was speaking to a friend who has an 18 years-old son that is also battling cancer. I am confident that he, just like me, will beat this beast. Interestingly when I shared the pain I felt in my lower back she shared that her son felt the same pain during chemo, so my remote hypothesis might be right, I might have put my bone marrow to work as planned.
To close this perfect week Sunday was Mother`s Day and Livia made the best lunch she has ever prepared to celebrate Mother`s Day. Hers and my parents came over with my brother and her brother and sister and we had a great time. We have officially inaugurated our kitchen with an amazing homemade meal.
I was tinkering with the idea of going downstairs to exercise but I wanted to share this amazing week with you with a conclusion: as long as we have a loving family, great friends and a passion to live for we will always be happy. Life is perfect as long as we live it well, despite all the hardship and battles we face.
I have been reading another amazing book that a Pittsburgh friend sent me: "The Sunny Side of Cancer", from Sunny Carney. The power of staying strong as we face our battles will always determine how well we live, whether we have 60 months or 60 years to live ahead. I thought I was having some original thoughts about life but Sunny faces Carcinoid Cancer, a rare and tough cancer, with the same strength and positivity I am facing my tumor, focusing on living life to the fullest and battling her cancer with an uplifting attitude, inspiring me even more to do the same.
Like a friend I still owe a visit to used to tell me when I said I didn`t have time for something he would reply “How can you not have time? What separates us from death?”. Since then I rarely say I don’t have time for something, I always say I am doing something better instead.
Enjoy your time, I hope you liked this update; life is great and will continue to be no matter what! Focus on the positives and fix the negatives, this is what life is about.
Monday, April 23, 2012
Scary Good News!
This weekend was great and scary at the same time. Let's start with the best part: on Friday I got back my MRI results after my forth chemo cycle, and once again great news: no contrasting areas, and therefore no grade 3 tumor. This means that the worst part of my tumor has not come back. The second good news is that the grade 2 portion that was left in my brain has gotten smaller once again. God is giving me more chances, I feel so blessed, the chemo seems to be working and I am feeling great!
Saturday started well, with me putting training wheels on my daughters' bikes and taking them for a ride, which was lots of fun. After that I spoke to a couple of friends from Boston that always inspire and energize me, then went to a friend's birthday party, where I met another brain tumor survivor, which of course is always energizing (at least from my perspective!). Finally I headed to my 21st high-school reunion, which I helped organize while I was at home recovering from surgery through Facebook. It was so great to see old friends, some of which I hadn't seen for over 15 years!
However after such a long day I ended up with a bad sinus infection. For any normal person no big deal, but this was the first time I got remotely sick after I started chemo. While knowing that my blood has not been terribly affected by my chemo, I could not help wondering if my body could handle an infection like it used to.
So I dedicated my Sunday to bed, spending most of the day in the horizontal position reading a fascinating book that I highly recommend: "The Emperor of All Maladies, a Biography of Cancer", by Siddhartha Mukherjee. Not only is this book an incredible journey through the history of cancer and medicine, but a series of lessons in many different topics: the perseverence of different people to find answers to several scientific challenges, the tough work to make cancer a national scientific priority in the US, the genious of several scientists that with amazing insights connected dots that were far away to develop new drugs against cancer, and the journey of so many people that were left behind in the fight against cancer but that with their bravery opened the doors to so many new treatments. Now I understand how the medication I take is connected to Mustard Gas, or why I resisted so much against radiotherapy and still believe I should until there is no other option, even though radiotherapy is in several cases the right treatment option, and the genious behind this discovery is just incredible.
Today I am up again in front of the computer to share my perspectives. A phrase in the book from Franz Kafka really struck me in the guts as a real lesson: Impatience kicked us out of Heaven, indolence kept us out. The fight against cancer, brain tumor and so many other persistant diseases is about patience and hard work, not only from the patient but also from amazing people that invest their lives to research, treat and raise funds to combat this modern day plague that has been around for centuries but that is much more present today as people don't die anymore from other diseases that were but are not deadly anymore.
I really want to thank the whole medical and pharmaceutical community for all their work and I hope that their continued efforts will someday help us find a magic pill against cancer. As I thought about work and tried to connect the dots and give meaning to our jobs and companies I came up with an interesting thought: students are taught in finance classes that managers are supposed to act in the best interest of shareholders, and therefore always strive to maximize profits. This is the moral equivalent of saying that survival is about eating the most. Like a famous organic products retailer CEO and founder says, food is for people what money is for business. Yes, all businesses and people need money, but the key to a long life and business is purpose. Eating is for people a way to survive, but not necessarily a path to total satisfaction. Every business needs a purpose, the money will follow if it performs its purpose well and if it pursues a relevant purpose to its customers or consumers. When we are lucky and happy enough to reconcile professional and personal goals we've found our way to total happiness. As I read the book and became increasingly interested in medicine I wondered if I should have been a Doctor. I quickly answered myself: if I had wheels I would be a car, if I had wings I would be an airplane, but I am who I am and love every second of it, with or without brain tumor. Life is awesome and unfortunately finite, but if it lasted forever we would probably not find a sense of urgency to live and do the things we like the most. Carpe Diem!
And I almost forgot: my sinus infection is gone, what an amazing recovery!
Saturday started well, with me putting training wheels on my daughters' bikes and taking them for a ride, which was lots of fun. After that I spoke to a couple of friends from Boston that always inspire and energize me, then went to a friend's birthday party, where I met another brain tumor survivor, which of course is always energizing (at least from my perspective!). Finally I headed to my 21st high-school reunion, which I helped organize while I was at home recovering from surgery through Facebook. It was so great to see old friends, some of which I hadn't seen for over 15 years!
However after such a long day I ended up with a bad sinus infection. For any normal person no big deal, but this was the first time I got remotely sick after I started chemo. While knowing that my blood has not been terribly affected by my chemo, I could not help wondering if my body could handle an infection like it used to.
So I dedicated my Sunday to bed, spending most of the day in the horizontal position reading a fascinating book that I highly recommend: "The Emperor of All Maladies, a Biography of Cancer", by Siddhartha Mukherjee. Not only is this book an incredible journey through the history of cancer and medicine, but a series of lessons in many different topics: the perseverence of different people to find answers to several scientific challenges, the tough work to make cancer a national scientific priority in the US, the genious of several scientists that with amazing insights connected dots that were far away to develop new drugs against cancer, and the journey of so many people that were left behind in the fight against cancer but that with their bravery opened the doors to so many new treatments. Now I understand how the medication I take is connected to Mustard Gas, or why I resisted so much against radiotherapy and still believe I should until there is no other option, even though radiotherapy is in several cases the right treatment option, and the genious behind this discovery is just incredible.
Today I am up again in front of the computer to share my perspectives. A phrase in the book from Franz Kafka really struck me in the guts as a real lesson: Impatience kicked us out of Heaven, indolence kept us out. The fight against cancer, brain tumor and so many other persistant diseases is about patience and hard work, not only from the patient but also from amazing people that invest their lives to research, treat and raise funds to combat this modern day plague that has been around for centuries but that is much more present today as people don't die anymore from other diseases that were but are not deadly anymore.
I really want to thank the whole medical and pharmaceutical community for all their work and I hope that their continued efforts will someday help us find a magic pill against cancer. As I thought about work and tried to connect the dots and give meaning to our jobs and companies I came up with an interesting thought: students are taught in finance classes that managers are supposed to act in the best interest of shareholders, and therefore always strive to maximize profits. This is the moral equivalent of saying that survival is about eating the most. Like a famous organic products retailer CEO and founder says, food is for people what money is for business. Yes, all businesses and people need money, but the key to a long life and business is purpose. Eating is for people a way to survive, but not necessarily a path to total satisfaction. Every business needs a purpose, the money will follow if it performs its purpose well and if it pursues a relevant purpose to its customers or consumers. When we are lucky and happy enough to reconcile professional and personal goals we've found our way to total happiness. As I read the book and became increasingly interested in medicine I wondered if I should have been a Doctor. I quickly answered myself: if I had wheels I would be a car, if I had wings I would be an airplane, but I am who I am and love every second of it, with or without brain tumor. Life is awesome and unfortunately finite, but if it lasted forever we would probably not find a sense of urgency to live and do the things we like the most. Carpe Diem!
And I almost forgot: my sinus infection is gone, what an amazing recovery!
Tuesday, April 17, 2012
Birthday Post!
What a week! Nothing like another birthday...
Now that I have two birthdays I feel like I am getting older faster, and I have to say that getting older never felt so good. Feeling like every day counts gave me a renewed sense of life and in a way I feel so much better today than I was before. Facing death in a way enabled me to really live and enjoy every second, I have to admit that in a strange way my brain tumor enabled me to really find a renewed sense of purpose and really focus on doing things that I really enjoy. Everything else gets brushed to the side, why would I ever do anything with my life that I don’t enjoy? Shouldn’t we all live like this? I have to say that I did already live like this, but now I believe even more strongly that people should not waste time with things they are not passionate about. Whether work, friends, family, I’ve always tried to do the things I enjoyed and surround myself with people I liked, and it shouldn’t come as a surprise that I live a very happy life, regardless of any condition.
My mother-in-law’s father had a really funny saying that I have to share: “no one wants to get old, but even less die young!” What a great way to capture how I felt. Today getting old doesn’t feel that bad. Livia would always ask him why he wouldn’t go out with his friends and he would always reply “the sons of ** all died”. In a weird way I always felt really connected to him, we had a really similar sense of humor, we shared a taste for wine, we were tall, and as crazy as it sounds he developed a brain tumor. Unfortunately he was diagnosed late, his tumor was a glioblastoma and was well larger than mine. But he lived a long and fulfilling life and I live with his legacy until today.
My birthday was really special. I woke up with my little daughter singing happy birthday while I was still in bed. She is usually the last one to get up and I am the first one. She was so proud to be the first one in the house to get up and knowing that my birthday was the first thing she remembered that day made me feel really special and lucky. I was also blessed with lots of Happy Birthday wishes, most wishing me also lots of health. I had an MRI on Sunday and for whatever reason I felt cured, we’ll see what the results say. For that reason I got up, biked for 20 minutes and went for a 10 minute run, which I did at my old running pace. Running never felt so good, I hadn’t run for a long time and it made me feel great. To add to the feeling, I ran into a girl at the gym that did 2 Ironmans. Is this a coincidence? What a motivation, everything pointing in the right direction, she shared that there are triathlon teams, cycling clubs, all within walking/running/biking distance from where I live. My life has such a strong gravity towards the things I wish, makes me feel like someone is really watching over me. As someone born on Easter from a mom born on Christmas I am starting to suspect who He is. Regardless of religion I have found that Faith is such a motivation in life.
This is it for today, I hope to have more great news on my next post, at the very least I will have a lot of fun, in 5 days we are having a high-school reunion and I hope to meet a lot of old friends that I haven't seen in several years. Let the celebration schedule begin!
Friday, March 30, 2012
Great News and More!
I don't even know what to start sharing, so I will start by apologizing for not updating this blog for so long. I've finally moved with my family to our own apartment (thanks extended family for keeping up with us for so long!) and life has been great! It took us a while but we now have Internet (no TV yet...).
I now live a few minutes from work, and best of all, walking distance! I never realized how much energy commuting consumed, I don't recall a single period in my life when I've had so much energy, even when I was in great shape. I have breakfast with Livia and the girls everyday for the first time ever as now our schedules match (they have to get up early to commute and I've always liked to wake up early). Wonder why the Government doesn't give tax breaks to those that live close to work (no, I am not legislating in my own interest, it just makes logical, environmental and spiritual sense).
Finally on the tumor front some amazing news to share: my tumor is smaller! After 3 chemo sessions I've witnessed a visible reduction in my tumor and best of all, still have witnessed no side effect. I am so confident now with my progress that I am back on the bike! Of course taking it easy, 30 minutes of relatively low effort on the trainer and I am good to go. Check this out:
Hopefully in a few weeks I might join a cycling club around here and start over, I still want to do an Ironman when I turn 40. It is so good to dream and have plans, although I learned the hard way that there is nothing like the present!
These last weeks have been incredible! I've witnessed Isabel learn to read (interestingly her first favorite book is a Bible for kids) and Isadora learn to swim (best of all, thanks to the help of another little friend that just gave her the best advice ever: "dig like a dog!").
I also had the incredible pleasure of meeting Oscar Schmidt. For the Brazilian basketball unaware, this guy is the highest scoring basketball player in history (yes, more points than even Kareem Abdul Jabar). I ran into him at a party where I didn't know anybody, and when I saw him I had to talk to him. As I asked to talk to him because we had something in common he said "OK, you are tall". I pointed at my head and he said "did you have an oligoastrocytoma?". Unbelievable but we had the same tumor and were there to share our stories.
Work has been amazing, I've been blessed to work with incredible people all over the place, and while working hard I am enjoying every second of it. , I feel so blessed!
For all my friends that have been praying for me, my family who I know protects me everyday with thoughts, prayers and love, and to God I just want to share that I've never been so happy. Yes we can live with glioma! God bless you all and enjoy your lives!
I now live a few minutes from work, and best of all, walking distance! I never realized how much energy commuting consumed, I don't recall a single period in my life when I've had so much energy, even when I was in great shape. I have breakfast with Livia and the girls everyday for the first time ever as now our schedules match (they have to get up early to commute and I've always liked to wake up early). Wonder why the Government doesn't give tax breaks to those that live close to work (no, I am not legislating in my own interest, it just makes logical, environmental and spiritual sense).
Finally on the tumor front some amazing news to share: my tumor is smaller! After 3 chemo sessions I've witnessed a visible reduction in my tumor and best of all, still have witnessed no side effect. I am so confident now with my progress that I am back on the bike! Of course taking it easy, 30 minutes of relatively low effort on the trainer and I am good to go. Check this out:
Hopefully in a few weeks I might join a cycling club around here and start over, I still want to do an Ironman when I turn 40. It is so good to dream and have plans, although I learned the hard way that there is nothing like the present!
These last weeks have been incredible! I've witnessed Isabel learn to read (interestingly her first favorite book is a Bible for kids) and Isadora learn to swim (best of all, thanks to the help of another little friend that just gave her the best advice ever: "dig like a dog!").
I also had the incredible pleasure of meeting Oscar Schmidt. For the Brazilian basketball unaware, this guy is the highest scoring basketball player in history (yes, more points than even Kareem Abdul Jabar). I ran into him at a party where I didn't know anybody, and when I saw him I had to talk to him. As I asked to talk to him because we had something in common he said "OK, you are tall". I pointed at my head and he said "did you have an oligoastrocytoma?". Unbelievable but we had the same tumor and were there to share our stories.
Work has been amazing, I've been blessed to work with incredible people all over the place, and while working hard I am enjoying every second of it. , I feel so blessed!
For all my friends that have been praying for me, my family who I know protects me everyday with thoughts, prayers and love, and to God I just want to share that I've never been so happy. Yes we can live with glioma! God bless you all and enjoy your lives!
Saturday, February 25, 2012
Welcome back Lance Armstrong!
Maybe unnoticed by most non-cyclists, non-triathletes or non-cancer fighters (speaking as a non-US resident), cancer survivor, 7-times Tour de France champion Lance Armstrong, who started his athletic career in triathlon, came back to his original sport in the Panama Triathlon 70.3 Ironman. He accomplished the amazing feat of finishing in second place, only 31 seconds behind the winner, Bevan Docherty.
Considering Lance's age - he is 40 - his lack of experience in triathlon (especially long ones, where balancing your effort across the race is critical) and his incredibly busy life leading one of the largest cancer fundraising organizations in the world, Livestrong, this is quite an amazing feat.
When we consider that he was only 31 seconds behind an Olympic champion that is significantly more experienced in the sport, this is simply incredible. Thank you for doing this Lance, you are a huge inspiration!
I am not sure if this was the final boost I needed to get back to triathlon but several things are conspiring in that favor, and I am trully determined to be back soon. OK, maybe not as fast as Lance, but I will be happy just finishing one. And definitely no Tour de Frances wins, but maybe as a spectator...
The first great news is that my head no longer hurts. This has not only allowed me to sleep better but also to get my first haircut since my surgery! When I run my head doesn't hurt either, although I have to admit that my doctors intimidated me into not running yet.
The second great news is that I finally move into my own house in 5 days, and will be only a few minutes from work. This means that after 8 long months my stuff is finally leaving the moving container, including my bike trainer, a gift I got from my "older brother", the person that got me into cycling and to whom I owe so much personally and professionally! I am going to start biking at home until I feel confident enough to go outside without the fear of having a seizure. With the two extra hours I get in my day simply from reducing my commute time I will have plenty of time to dedicate to my girls and to the sport I learned to love.
My last few weeks have been so amazing that I am starting to believe that Temodal is a magic drug that even improves my energy levels. Today I walked nearly 10 kilometers around the city, got a haircut, had lunch with my dad, came home to work for a few hours on my taxes and still had the energy (in fact quite a lot) to write this post.
Last week was Carnaval in Brazil and we headed to the mountains with the family. We hiked quite a bit and played a lot with the girls, who all got a little sick afterwards. Interestingly I was the only one that did not get sick in the house, which is quite surprising given that my chemo is supposed to mess with the white cells in the blood in most cases, hammering the immune system.
Once again I feel incredibly lucky, my oncologist shared that my first post-chemo blood exam showed no signs of blood changes, and that I must have an excellent blood marrow. Wonder if triathlon contributed to this. Oddly in my life things seem to always conspire in my favor, nobody ever understood what has gotten me to start waking up at 5AM to torture myself swimming, biking and running, but this might be why, I was getting prepared for my next battle.
Just as being diagnosed as soon as we moved back to be closer to our families in Brazil, this might be another sign of incredible luck. I once again feel like God is carrying me in his arms, just as in footprints in the sand (http://www.footprints-inthe-sand.com/index.php?page=Poem/Poem.php).
This week was very important to me, I exchanged a few notes with Scott Vickroy (check the Survival Stories section in this blog) and his caregiver Shelly Francis. He is doing really well, inspiring me to follow his example, and Shelly is publishing a book about her experience with Scott. To anyone who, like my wife, was frightened by the idea of what can come with a glioma, her book is certainly a welcome gift. For more details check caregiverhope.com, the book should be out very soon. These are heroes who are yet to save lots of people by delivering hope and optimism, the most important things we need in our journeys.
Finally I just wanted to reassure all of you that follow my blog that I am as well as I can be, my life is completely normal and that there is still a lot for all of us to do with our lives, except wasting our precious time doing nothing.
Wether I am doing my taxes or walking barefoot to spend energy I am as thankful as I can be for God's ability to teach me how to lead my life. Yes I can live with glioma and today I feel like a better person than I have ever been before, and as long as we always learn to appreciate everything we have, and to have the fortitude to chase the things we love, we will be happy.
To close I want to share my biggest wish: I hope God continues to give me the strength to change the things that need to be changed, the patience to deal with the things that I can't change, and the wisdom to distinguish between the two.
My glioma might fall into the "things that I can't change" category, but I will continue to fight it until it is totally gone, I owe my friends a big party to celebrate life and I am determined to make it happen.
Friends around the world, get ready for Brazil!
Considering Lance's age - he is 40 - his lack of experience in triathlon (especially long ones, where balancing your effort across the race is critical) and his incredibly busy life leading one of the largest cancer fundraising organizations in the world, Livestrong, this is quite an amazing feat.
When we consider that he was only 31 seconds behind an Olympic champion that is significantly more experienced in the sport, this is simply incredible. Thank you for doing this Lance, you are a huge inspiration!
I am not sure if this was the final boost I needed to get back to triathlon but several things are conspiring in that favor, and I am trully determined to be back soon. OK, maybe not as fast as Lance, but I will be happy just finishing one. And definitely no Tour de Frances wins, but maybe as a spectator...
The first great news is that my head no longer hurts. This has not only allowed me to sleep better but also to get my first haircut since my surgery! When I run my head doesn't hurt either, although I have to admit that my doctors intimidated me into not running yet.
The second great news is that I finally move into my own house in 5 days, and will be only a few minutes from work. This means that after 8 long months my stuff is finally leaving the moving container, including my bike trainer, a gift I got from my "older brother", the person that got me into cycling and to whom I owe so much personally and professionally! I am going to start biking at home until I feel confident enough to go outside without the fear of having a seizure. With the two extra hours I get in my day simply from reducing my commute time I will have plenty of time to dedicate to my girls and to the sport I learned to love.
My last few weeks have been so amazing that I am starting to believe that Temodal is a magic drug that even improves my energy levels. Today I walked nearly 10 kilometers around the city, got a haircut, had lunch with my dad, came home to work for a few hours on my taxes and still had the energy (in fact quite a lot) to write this post.
Last week was Carnaval in Brazil and we headed to the mountains with the family. We hiked quite a bit and played a lot with the girls, who all got a little sick afterwards. Interestingly I was the only one that did not get sick in the house, which is quite surprising given that my chemo is supposed to mess with the white cells in the blood in most cases, hammering the immune system.
Once again I feel incredibly lucky, my oncologist shared that my first post-chemo blood exam showed no signs of blood changes, and that I must have an excellent blood marrow. Wonder if triathlon contributed to this. Oddly in my life things seem to always conspire in my favor, nobody ever understood what has gotten me to start waking up at 5AM to torture myself swimming, biking and running, but this might be why, I was getting prepared for my next battle.
Just as being diagnosed as soon as we moved back to be closer to our families in Brazil, this might be another sign of incredible luck. I once again feel like God is carrying me in his arms, just as in footprints in the sand (http://www.footprints-inthe-sand.com/index.php?page=Poem/Poem.php).
This week was very important to me, I exchanged a few notes with Scott Vickroy (check the Survival Stories section in this blog) and his caregiver Shelly Francis. He is doing really well, inspiring me to follow his example, and Shelly is publishing a book about her experience with Scott. To anyone who, like my wife, was frightened by the idea of what can come with a glioma, her book is certainly a welcome gift. For more details check caregiverhope.com, the book should be out very soon. These are heroes who are yet to save lots of people by delivering hope and optimism, the most important things we need in our journeys.
Finally I just wanted to reassure all of you that follow my blog that I am as well as I can be, my life is completely normal and that there is still a lot for all of us to do with our lives, except wasting our precious time doing nothing.
Wether I am doing my taxes or walking barefoot to spend energy I am as thankful as I can be for God's ability to teach me how to lead my life. Yes I can live with glioma and today I feel like a better person than I have ever been before, and as long as we always learn to appreciate everything we have, and to have the fortitude to chase the things we love, we will be happy.
To close I want to share my biggest wish: I hope God continues to give me the strength to change the things that need to be changed, the patience to deal with the things that I can't change, and the wisdom to distinguish between the two.
My glioma might fall into the "things that I can't change" category, but I will continue to fight it until it is totally gone, I owe my friends a big party to celebrate life and I am determined to make it happen.
Friends around the world, get ready for Brazil!
Saturday, February 11, 2012
Might the Chemo Work!
Yesterday I got my first MRI clear enough to see what is left from my tumor. As expected I had a "contrasting" portion, leading the MRI doctor to write that the tumor is 1.2cm. A little more than I was hoping but a lot less than before my surgery. As I shared before it was leaving a bit of tumor or losing my left side movement. I haven't spoken to my doctor or onchologist yet, I have an appointment with my onchologist on Monday to discuss implications, but what I know is that my chemo is supposed to reduce this until it totally disapears, fingers crossed!
What is important is that I have been living a totally normal life, I am back to work and had a great kickstart (or I should say re-kickstart), went to my friends monthly Happy Hour (Clube do Rato!), to which a few members still resist to show up every once in a while to everyone's disappointment, and most importantly, closed a rental agreement and will finally live in my own house after nearly 9 months "camping" at my in-laws or parents. I really thank my parents and in-laws for opening their houses for a grown-up family, one more reason why I am always so positive, I have an amazing and supportive family.
On Wednesday, when I had my MRI, I ran into a few friends at the Hospital, something that is becoming a tradition, and this one was awesome. First a friend of mine that I hadn't seen since High School! He looked at me and asked "Patrick?". I recognized him immediately, he hadn't changed at all in the last 20 years, just like me :-)! He had been following my journey in a closer way than I expected, and by a huge coincidence his little brother suffered from a nervous system tumor on his hearing nerve. He removed it and is living a healthy life. As he approached me I was staring at a lady that I thought was identical to a Brazilian lady I met in Pittsburgh. She was at Pittsburgh for a lung transplant at UPMC and lived there for a while with her husband to recover from the procedure. For anyone that thinks a brain tumor is tough, watching her recover from a lung transplant gave me a new perspective. And for my amazement and delight it was her, healthy and energized, absolutely perfect from my point-of-view. And her husband, a great person with a great heart, who could not contain his emotions from seeing me. He had been following my story and witnessing in person how well I was certainly caught him by surprise. The happiness we got from each other certainly gave us a few extra years of life, and I look forward to seeing them more often. God bless the doctors that have helped us share these moments. But this is not about who has the worst condition, but about who can heal better, and I think we all tied in first place!
Life is good, looking forward to a renewed adult life with my wife and kids at our own house, as this chemo works its magic. I hope I can help people going through this enlighting but scary journey with brain tumor, and help others that can learn and get inspiration from us, as the clock is ticking for everybody and we must enjoy life at its fullest with our families and friends. We don't choose what comes at us but we choose how we react - let's always react optimisticaly, positively and leaving a smile on the faces of those we see.
What is important is that I have been living a totally normal life, I am back to work and had a great kickstart (or I should say re-kickstart), went to my friends monthly Happy Hour (Clube do Rato!), to which a few members still resist to show up every once in a while to everyone's disappointment, and most importantly, closed a rental agreement and will finally live in my own house after nearly 9 months "camping" at my in-laws or parents. I really thank my parents and in-laws for opening their houses for a grown-up family, one more reason why I am always so positive, I have an amazing and supportive family.
On Wednesday, when I had my MRI, I ran into a few friends at the Hospital, something that is becoming a tradition, and this one was awesome. First a friend of mine that I hadn't seen since High School! He looked at me and asked "Patrick?". I recognized him immediately, he hadn't changed at all in the last 20 years, just like me :-)! He had been following my journey in a closer way than I expected, and by a huge coincidence his little brother suffered from a nervous system tumor on his hearing nerve. He removed it and is living a healthy life. As he approached me I was staring at a lady that I thought was identical to a Brazilian lady I met in Pittsburgh. She was at Pittsburgh for a lung transplant at UPMC and lived there for a while with her husband to recover from the procedure. For anyone that thinks a brain tumor is tough, watching her recover from a lung transplant gave me a new perspective. And for my amazement and delight it was her, healthy and energized, absolutely perfect from my point-of-view. And her husband, a great person with a great heart, who could not contain his emotions from seeing me. He had been following my story and witnessing in person how well I was certainly caught him by surprise. The happiness we got from each other certainly gave us a few extra years of life, and I look forward to seeing them more often. God bless the doctors that have helped us share these moments. But this is not about who has the worst condition, but about who can heal better, and I think we all tied in first place!
Life is good, looking forward to a renewed adult life with my wife and kids at our own house, as this chemo works its magic. I hope I can help people going through this enlighting but scary journey with brain tumor, and help others that can learn and get inspiration from us, as the clock is ticking for everybody and we must enjoy life at its fullest with our families and friends. We don't choose what comes at us but we choose how we react - let's always react optimisticaly, positively and leaving a smile on the faces of those we see.
Sunday, January 29, 2012
Back to Life, Back to Work!
The last few weeks have been very interesting. I've been anxiously waiting to be well enough to safely get back to work, so I was home for most of the time. As my energy level got back to normal with no traditional outlet to release it (work, exercising etc.) I spent most of the time reconnecting with old friends through email or Facebook, playing with my kids, trying to stay tunned with what was happening at work remotely, reading and eating. Interestingly a friend from Mexico posted a very cool phrase that really applies to this period: es mejor perder tiempo con los amigos que perder los amigos con el tiempo (better to waste time with friends than lose friends with time).
On the week of Jan 9, the last week preceeding chemo, I organized a Happy Hour with my College friends and made a surprise visit to the place I worked at in Brazil before I moved to the US. I joke that I never felt like I left, so I always come back unnanounced to their delight.
On Jan 16 I started chemo and had a wonderful relationship with it. No side effects, so I felt much better about getting back to work and normal life. To celebrate I spent the weekend at the beach with great friends. The better I felt the more motivated I felt to get back with normal life.
On Jan 19 I attended my neurologist's office and he recommended that to ensure my safe return to work I should have a few extra exams. Among them I was literally induced to have seizures through hyper-ventilation and what I call "Pokemon Lights", a series of blinking lights that try to induce seizures to ensure that my anti-seizure medicine is working appropriately and to verify if I am having seizures that might not be noticeable. Since I switched my anti-seizure medication to Keppra, which is not widely known in Brazil yet, these precautions were important. Sometimes these seizures can have psychological side effects, but as the people who know me can attest I am probably as good as it gets.
On the week of Jan 23 I attended 2 birthday parties and gave a motivational speech at my dad's office, something unthinkable before my glioma. My dad wrote a few articles titled "Every Executive has a Journey in the Desert". My dad is an Outplacement Executive and after years working with people that go through their journeys in the desert, he identified key periods that are particulalry difficult in their lives: getting fired after a successful career, experiencing the death of a loved one, financial ruin, betrayal from business partners, divorce and finally health problems, and this is where I came in, I was the subject of his article.
I shared my experience dealing with my unexpected journey in the desert and the importance of always facing the situation bravely, optimistically and always acting to overcome adversity. In my case I shared the importance of the family, friends, of doing what you love. I spoke for about 2 hours and brought-up things that even my dad had forgotten, such as when I used to work with him as an office-boy when I was 13. It was a great dry-run to see if I can still speak in public. I just watched the video and it was pretty good, I am ready to get back to work.
On January 26 I was back to my neurologist to discuss the results of my exams and they were good! I was cleared to get back to work, so I was back the next day!
Yesterday I attended a wedding from a very dear friend. To give you an idea of the kind of friend he is, he ordered non-alcoholic beer just for me at the wedding party. It was so great to see the joy in his and his wife's face, and to reconnect with his family, to which I was pretty close during High-School.
I ran into friends I hadn't seen for a long time, reinforcing a declaration I got from a great friend right before my surgery. I kept joking that if I forgot who they were I hoped that I still liked them after surgery once I was reintroduced to them. He wrote in the Photo Album Livia prepared with my friends right before my surgery that I should not worry about forgetting them because they lived in my heart, not in my brain. And nothing was closer to reality, yesterday was another demonstration that my friends have always lived in my heart, not in my brain.
The last piece of news is that I finally might close an apartment deal this week, allowing me to live for the first time in my life at a place that is walking distance from work. Wish me luck, this will give me a couple hours to get back with my exercise routine, writting this blog and clearing my mind from the stress of daily traffic!
Tomorrow my kids start school and I am going to work. Life is back to normal!
On the week of Jan 9, the last week preceeding chemo, I organized a Happy Hour with my College friends and made a surprise visit to the place I worked at in Brazil before I moved to the US. I joke that I never felt like I left, so I always come back unnanounced to their delight.
On Jan 16 I started chemo and had a wonderful relationship with it. No side effects, so I felt much better about getting back to work and normal life. To celebrate I spent the weekend at the beach with great friends. The better I felt the more motivated I felt to get back with normal life.
On Jan 19 I attended my neurologist's office and he recommended that to ensure my safe return to work I should have a few extra exams. Among them I was literally induced to have seizures through hyper-ventilation and what I call "Pokemon Lights", a series of blinking lights that try to induce seizures to ensure that my anti-seizure medicine is working appropriately and to verify if I am having seizures that might not be noticeable. Since I switched my anti-seizure medication to Keppra, which is not widely known in Brazil yet, these precautions were important. Sometimes these seizures can have psychological side effects, but as the people who know me can attest I am probably as good as it gets.
On the week of Jan 23 I attended 2 birthday parties and gave a motivational speech at my dad's office, something unthinkable before my glioma. My dad wrote a few articles titled "Every Executive has a Journey in the Desert". My dad is an Outplacement Executive and after years working with people that go through their journeys in the desert, he identified key periods that are particulalry difficult in their lives: getting fired after a successful career, experiencing the death of a loved one, financial ruin, betrayal from business partners, divorce and finally health problems, and this is where I came in, I was the subject of his article.
I shared my experience dealing with my unexpected journey in the desert and the importance of always facing the situation bravely, optimistically and always acting to overcome adversity. In my case I shared the importance of the family, friends, of doing what you love. I spoke for about 2 hours and brought-up things that even my dad had forgotten, such as when I used to work with him as an office-boy when I was 13. It was a great dry-run to see if I can still speak in public. I just watched the video and it was pretty good, I am ready to get back to work.
On January 26 I was back to my neurologist to discuss the results of my exams and they were good! I was cleared to get back to work, so I was back the next day!
Yesterday I attended a wedding from a very dear friend. To give you an idea of the kind of friend he is, he ordered non-alcoholic beer just for me at the wedding party. It was so great to see the joy in his and his wife's face, and to reconnect with his family, to which I was pretty close during High-School.
I ran into friends I hadn't seen for a long time, reinforcing a declaration I got from a great friend right before my surgery. I kept joking that if I forgot who they were I hoped that I still liked them after surgery once I was reintroduced to them. He wrote in the Photo Album Livia prepared with my friends right before my surgery that I should not worry about forgetting them because they lived in my heart, not in my brain. And nothing was closer to reality, yesterday was another demonstration that my friends have always lived in my heart, not in my brain.
The last piece of news is that I finally might close an apartment deal this week, allowing me to live for the first time in my life at a place that is walking distance from work. Wish me luck, this will give me a couple hours to get back with my exercise routine, writting this blog and clearing my mind from the stress of daily traffic!
Tomorrow my kids start school and I am going to work. Life is back to normal!
Tuesday, January 17, 2012
First Chemo Day - Allez Klar!
Thank you! Your prayers worked!
I cannot believe this but just like my oncologist predicted I am reacting very well to my chemo medicine, Temodal. I had a full meal after taking it, had a totally normal night of sleep and woke-up for a big breakfast, which now is a bit healthier than my pre-glioma breakfast. My old breakfast consisted of a cereal bar and chocolate milk. Now I have a slightly different breakfast, with a Granola/Yogurt combo, coffee and a banana. Today Livia added a fruit smoothy to the mix, with a full Papaya (including the seeds), apple, banana and orange (and probably another mistery fruit...). I have to confess that I am worried a Papaya tree might grow inside me, but I suppose my digestion will take care of that! This is a radical shift from my previous life behavior, when I would joke I didn't eat things that didn't walk, such as fruit and vegetables.
Thank you so much for all your notes, prayers, positive thoughts and support. Once again you are proving that friends are always the best medicine, you cured my anxiety and prepared me for a smooth start to chemo. I am doing great, 3 more days of chemo to go to finish my first cycle, but the first day could not have gone better, assuming that the Temodal is already working its magic on my remaining tumor.
God bless you all, I hope that as you look at me you realize, just like I did, that God is always there for you when you need him. Your collective love and support have all been a proof of God's love, so thank you for being here at this very important moment.
Love you!
I cannot believe this but just like my oncologist predicted I am reacting very well to my chemo medicine, Temodal. I had a full meal after taking it, had a totally normal night of sleep and woke-up for a big breakfast, which now is a bit healthier than my pre-glioma breakfast. My old breakfast consisted of a cereal bar and chocolate milk. Now I have a slightly different breakfast, with a Granola/Yogurt combo, coffee and a banana. Today Livia added a fruit smoothy to the mix, with a full Papaya (including the seeds), apple, banana and orange (and probably another mistery fruit...). I have to confess that I am worried a Papaya tree might grow inside me, but I suppose my digestion will take care of that! This is a radical shift from my previous life behavior, when I would joke I didn't eat things that didn't walk, such as fruit and vegetables.
Thank you so much for all your notes, prayers, positive thoughts and support. Once again you are proving that friends are always the best medicine, you cured my anxiety and prepared me for a smooth start to chemo. I am doing great, 3 more days of chemo to go to finish my first cycle, but the first day could not have gone better, assuming that the Temodal is already working its magic on my remaining tumor.
God bless you all, I hope that as you look at me you realize, just like I did, that God is always there for you when you need him. Your collective love and support have all been a proof of God's love, so thank you for being here at this very important moment.
Love you!
Sunday, January 15, 2012
Last Pre-Chemo Day
Today is my last day before chemo and I am a bit anxious. Nonetheless I am fully alive, and might as well enjoy! Livia got me out of the house to workout today and I biked in those sitting stationary bikes for 15 minutes and was able to sweat a bit. I could not believe it but I am still able to keep a 100rpm cadence without struggling. Then I lifted some weights, something I never do, light but enough to trigger my endorphins. I am now focused in gaining some muscle mass to build reserves, in case I need it. Today I weighed myself and am happy to report that I am right back to my pre-surgery weight, and can fully open my jaw to eat, the pain in my head is almost gone!
You have been awesome praying for me, keeping me positive and giving me the strength to beat this tumor. As a new battle begins please say a prayer for me, wish me luck and envision me climbing the Pyrinees on my way from Montpelier, France, to Fatima, Portugal. There is more to this than a simple bike ride, but we will get there at the right time, and you will be part of it. Since seeing the snow covered mountains from the distance I keep dreaming of dipping my healed head into the snow of the Pyrinees. As crazy as it sounds, I think I miss snow...
I wish you could all see how well I am now, give me a big smile and receive a big hug in exchange! Since so many of you are far away, just envision it and feel it. It is real and tight. Thanks for hanging with me, you are the best!
You have been awesome praying for me, keeping me positive and giving me the strength to beat this tumor. As a new battle begins please say a prayer for me, wish me luck and envision me climbing the Pyrinees on my way from Montpelier, France, to Fatima, Portugal. There is more to this than a simple bike ride, but we will get there at the right time, and you will be part of it. Since seeing the snow covered mountains from the distance I keep dreaming of dipping my healed head into the snow of the Pyrinees. As crazy as it sounds, I think I miss snow...
I wish you could all see how well I am now, give me a big smile and receive a big hug in exchange! Since so many of you are far away, just envision it and feel it. It is real and tight. Thanks for hanging with me, you are the best!
Thursday, January 12, 2012
Life Goes On!
This week has been pretty amazing so far!
Started with an onchologist visit, and I was able to negotiate my chemo start date: Monday, Jan 16 2012!
I hope that I can navigate (or even better, negate) any side-effects from the therapy, such as nausea or hair loss, and maximize the benefits, eliminating completely my tumor. Keep the prayers and positive thoughts coming. Believe me, they work, they make me feel like God is always on my side, and He trully is, keeping me strong and positive.
Some work related friends organized a lunch for me yesterday and it was so energizing! It is amazing to experience the genuine happyness coming from people that see me for the first time after surgery and see how well I am.
Following lunch I spent the afternoon with another work related friend, a cancer survivor but most importantly an amazing individual who epithomized a phrase I learned recently: we don't make new friends, we simply recognize them. This person, who I met in October of last year, was a guy I felt I've been friends with since childhood. And I didn't even know he was a cancer survivor at first. Now we openly share stories and deeply care for each other.
I finally closed the day at a Happy Hour with several College classmates, some of who I haven't seen for years as I had been in the U.S. for the last 10 years. I obviosly gave them an earful for not getting together in my absense. I told them that we should not need someone to have a brain tumor to get together. Life is busy, we all have families and jobs to care for, but letting friends behind for those reasons are false dicotomies, terrible and unexcusable mistakes! Life is too short, and we need to have constant moments of celebration to relive the good old days and to create the great new days of the future. This applies to everyone!
Today I spent the day at the park with my girls and my mom (shouldn't she be part of my girls list?). They rode bikes while I tracked along walking. Isabel is almost riding without training wheels, I can't wait to see her riding without training wheels! After biking we had some ice cream and came back home.
I've been trying to stay as active as possible, socially, physically and mentally.
I just downloaded the biography of Henry John Heinz into my Kindle, and what a great read! Pittsburgh and its citizens fascinate me, I've read about Andrew Carnegie, Henry Frick, Mellon and Westinghouse, but of all the amazing people that changed the world from Pittsburgh, Mr. Heinz is definitelly the best! I am really proud to be part of his legacy and to be an honorary Pittsburgher.
Speaking of honorary citizenships, I've been claiming French citizenship since my rebirth on Dec 13-2011 in Montpellier, Framce. Yesterday a friend gave me a music box that plays the Marseillaise, what a thoughtful present! I think that the only missing component now is my French soccer jersey to cheer Vive le France during the World Cup in Brazil! It is possible (and great) to have 3 nationalities in your heart! I will be wearing Brazil, U.S. and France next year, may the best one win!
The key take-aways I want you to take from this post are:
- Everything is possible when you are surrounded by people that love you and people you love
- Life is too short so enjoy every second of it as time is the most precious resource we all have
- Treasure your friends from all your walks of life - they will never let you down
- Immediatelly send an email, tweet, facebook message or call a friend that you haven't seen in a while but that you think about often and schedule a dinner with him/her - the group may get bigger as you talk about it but do it right now. Trust me, you will not regret it!
Started with an onchologist visit, and I was able to negotiate my chemo start date: Monday, Jan 16 2012!
I hope that I can navigate (or even better, negate) any side-effects from the therapy, such as nausea or hair loss, and maximize the benefits, eliminating completely my tumor. Keep the prayers and positive thoughts coming. Believe me, they work, they make me feel like God is always on my side, and He trully is, keeping me strong and positive.
Some work related friends organized a lunch for me yesterday and it was so energizing! It is amazing to experience the genuine happyness coming from people that see me for the first time after surgery and see how well I am.
Following lunch I spent the afternoon with another work related friend, a cancer survivor but most importantly an amazing individual who epithomized a phrase I learned recently: we don't make new friends, we simply recognize them. This person, who I met in October of last year, was a guy I felt I've been friends with since childhood. And I didn't even know he was a cancer survivor at first. Now we openly share stories and deeply care for each other.
I finally closed the day at a Happy Hour with several College classmates, some of who I haven't seen for years as I had been in the U.S. for the last 10 years. I obviosly gave them an earful for not getting together in my absense. I told them that we should not need someone to have a brain tumor to get together. Life is busy, we all have families and jobs to care for, but letting friends behind for those reasons are false dicotomies, terrible and unexcusable mistakes! Life is too short, and we need to have constant moments of celebration to relive the good old days and to create the great new days of the future. This applies to everyone!
Today I spent the day at the park with my girls and my mom (shouldn't she be part of my girls list?). They rode bikes while I tracked along walking. Isabel is almost riding without training wheels, I can't wait to see her riding without training wheels! After biking we had some ice cream and came back home.
I've been trying to stay as active as possible, socially, physically and mentally.
I just downloaded the biography of Henry John Heinz into my Kindle, and what a great read! Pittsburgh and its citizens fascinate me, I've read about Andrew Carnegie, Henry Frick, Mellon and Westinghouse, but of all the amazing people that changed the world from Pittsburgh, Mr. Heinz is definitelly the best! I am really proud to be part of his legacy and to be an honorary Pittsburgher.
Speaking of honorary citizenships, I've been claiming French citizenship since my rebirth on Dec 13-2011 in Montpellier, Framce. Yesterday a friend gave me a music box that plays the Marseillaise, what a thoughtful present! I think that the only missing component now is my French soccer jersey to cheer Vive le France during the World Cup in Brazil! It is possible (and great) to have 3 nationalities in your heart! I will be wearing Brazil, U.S. and France next year, may the best one win!
The key take-aways I want you to take from this post are:
- Everything is possible when you are surrounded by people that love you and people you love
- Life is too short so enjoy every second of it as time is the most precious resource we all have
- Treasure your friends from all your walks of life - they will never let you down
- Immediatelly send an email, tweet, facebook message or call a friend that you haven't seen in a while but that you think about often and schedule a dinner with him/her - the group may get bigger as you talk about it but do it right now. Trust me, you will not regret it!
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