Yesterday I received the best news since my post MRI with perfusion images were evaluated. After finding out that no apparent tumor growth was evident on my MRI from December 28th I stayed for the first time three months without an MRI, changing the frequency at which I check myself out. The results are in and no tumor growth was apparent, same images as my post-surgery MRI from January 2012.
Given my tolerance to chemo and the apparent lack of side effects from a prolonged use of Temodar I am about to begin another 6 cycles of chemo to play it safe, but I hope I am taking it for no reason! As I do my own research and get extra life I get more energized about the prospects of all those afflicted by brain tumors and cancer. Incredibly I started wondering if obesity was just a type of cancer on the fat tissue and the answer might be yes according to Dr. William Li, who presented his angiogenesis theory at a TED conference (http://blog.ted.com/2010/05/17/can_we_eat_to_s/).
The interesting theory he exposes is that cancer might be an abnormal development of blood vessels that grows uncontrollably, hence the successful adoption of Avastin to treat the most aggressive form of brain tumor, glioblastomas. He expresses a theory on eating to starve cancer by essentially preaching a list of different foods that might help combat cancer. While I don't buy that eating well is a recipe for cancer cure I do believe that there is something to be said about trying to eat a menu as diversified as possible. While I lived in the US I have to say that my menu was fairly restricted, the restaurant options around work were limited and I was never the kind of person that took my food to work. In fact I was simply more likely to live by my joke of not eating things that do not walk!
While talking to my wife about flowers she mentioned how different types of soil minerals affect flower colors. I have also read extensively that when choosing food options the simplest way to ensure healthy eating is by having lots of colors on the plate. I would not be surprised if a good variety of minerals in a diet leads to a healthier body, after all we are what we are and got here by being omnivores.
I have shared in my "We Can Think With Glioma" blog that the highest correlation to cancer incidence is latitude - the higher the latitude the higher the cancer incidence. While at first I thought of sun incidence (or lack of) as a potential cause for cancer I am now wondering if the restricted number of food options might be to blame. As humanoids migrated away from the tropics they were confronted with the exposure to seasons and were therefore in need to hunt to survive as picking fruits and vegetables from the ground were no longer an option. This also created the need for farming, a way to produce and accumulate food for the harsh winters, providing fewer but more reliable sources of food. These two factors - lack of sunlight exposure and a more restricted diet - might be factors to be further investigated, but while the infinite number of causes might be to blame the finite number of cancer cures seem to be working better and better, great news to all of us who were abruptly reminded that life in our current form does not go on indefinitely.
In any event to celebrate this great news I am signing up for my first post-tumor triathlon and can't wait to share that experience. While swimming might not seem like the best idea for someone who is still taking anti-seizure medication sitting at home waiting for death to arrive sounds like an even worse option, so to prove that we can live with glioma and hopefully for a very long time I am going to continue to train and tri until I can, I am back and as energized as I have ever been!
My name is Patrick Macedo and on July 9, 2011 I had a seizure that led me to discover a tumor inside my brain. Blogging was never something I thought of doing but after being inspired by people who like me were diagnosed with glioma (just qualified my glioma as a grade 2 oligoastrocytoma with areas of grade 3 transformation) I thought sharing my perspectives can help others.
Wednesday, March 27, 2013
Tuesday, February 26, 2013
More Great News!
Yesterday I visited my onchologist and received one great news after another. He shared that a number of patients are seeing similar recoveries to mine, temozolamide seems to work wonders around gliomas and progresively more patients are cured with little side effects for some lucky people like me - no hair loss, no blood changes and no nausea (except for when I felt adventurous and tried chemo without anti-nausea medication).
We decided to extend my chemo cycles for another 6 months in case I still have tumor cells that are not visible in the MRIs, which I now have every 3 months (next one on March 28th). He also shared that my theory around exercising may be right (check out www.wecanthinkwithglioma.blogspot.com), it looks like exercising not only improves outcomes for cancer patients but it also helps prevent cancer and tumors. I was excited to get another 6 months of doping - I feel much stronger on the bike when I am on chemo. UCI, watch out for athletes on temozolamide, Rio here I come!
This weekend was very special, my friend's son had his 19th birthday party and his daughter just got a great job after graduating from College. Many people go through this cycle and I can only imagine how proud they are when it happens, but my friend had a stomach cancer years ago when his kids were around the same age as mine. When I was diagnosed one of the things I wished the most was to live to watch my girls graduate from College, and regardless of my tumor status I have no guarantees I will likve to see that. Yet we all live as if these are sure things and plan our lives as if everything would go according to plan. Watching the happiness in my friend's expressions and Facebook posts was incredible, but when I realized how much more special a moment like this is when we stare at death from so close all of a sudden every moment feels deeper, longer and stonger. I was living his happiness through my normal life, and once again I felt a lot more joy from watching what may be a trivial moment to a by-stander like me.
One of the best lessons I learned from this experience is that regardless of our plans, actions and results nothing will go according to plan. Life is about enjoying the journey, not about the destination or result. When a great friend of mine lost his life to cancer his last words to me were "what a journey". I vividly remember his skiny smilly face summarizing life in this brilliant phrase and while I have always lived as if there was no tomorrow I never really believed that no tomorrow was an option. Being aware that life is finite, at least in our current state, made me focus more than ever on the present and I feel happier than ever. Losing my fear set me free, and I invite you to live without fear. No matter what life is great, the world is full of things to do, look around and you will not find it hard to see something to do to make the world better, from giving a smile to a stratnger to walking a lost soul to his destination. I have oddly a few times walked with people in the street who ask me for directions and I just reply "walk with me!".
So many times I looked down and kept walking when strangers approached me for something, from beggers to lost people looking for direction, Since my experience I have totally changed my attitude, I have developed a profound curiosity for what drives people. Understanding and more importantly respecting everyone's driver and perspective made me better, and as crazy as it might sound I would not change my life for anything in the world, and this is the best testament for how I lived, for the great family I have and for the great friends I made, thank you all who have prayed for me. Whomever your God is keep praying, He is on our side! We all have our journeys through the desert but we should never quit walking, life is about turning challenges into adventures, if you can do this at any time you will have a great life, no matter how long it lasts or what happens along the journey.
We decided to extend my chemo cycles for another 6 months in case I still have tumor cells that are not visible in the MRIs, which I now have every 3 months (next one on March 28th). He also shared that my theory around exercising may be right (check out www.wecanthinkwithglioma.blogspot.com), it looks like exercising not only improves outcomes for cancer patients but it also helps prevent cancer and tumors. I was excited to get another 6 months of doping - I feel much stronger on the bike when I am on chemo. UCI, watch out for athletes on temozolamide, Rio here I come!
This weekend was very special, my friend's son had his 19th birthday party and his daughter just got a great job after graduating from College. Many people go through this cycle and I can only imagine how proud they are when it happens, but my friend had a stomach cancer years ago when his kids were around the same age as mine. When I was diagnosed one of the things I wished the most was to live to watch my girls graduate from College, and regardless of my tumor status I have no guarantees I will likve to see that. Yet we all live as if these are sure things and plan our lives as if everything would go according to plan. Watching the happiness in my friend's expressions and Facebook posts was incredible, but when I realized how much more special a moment like this is when we stare at death from so close all of a sudden every moment feels deeper, longer and stonger. I was living his happiness through my normal life, and once again I felt a lot more joy from watching what may be a trivial moment to a by-stander like me.
One of the best lessons I learned from this experience is that regardless of our plans, actions and results nothing will go according to plan. Life is about enjoying the journey, not about the destination or result. When a great friend of mine lost his life to cancer his last words to me were "what a journey". I vividly remember his skiny smilly face summarizing life in this brilliant phrase and while I have always lived as if there was no tomorrow I never really believed that no tomorrow was an option. Being aware that life is finite, at least in our current state, made me focus more than ever on the present and I feel happier than ever. Losing my fear set me free, and I invite you to live without fear. No matter what life is great, the world is full of things to do, look around and you will not find it hard to see something to do to make the world better, from giving a smile to a stratnger to walking a lost soul to his destination. I have oddly a few times walked with people in the street who ask me for directions and I just reply "walk with me!".
So many times I looked down and kept walking when strangers approached me for something, from beggers to lost people looking for direction, Since my experience I have totally changed my attitude, I have developed a profound curiosity for what drives people. Understanding and more importantly respecting everyone's driver and perspective made me better, and as crazy as it might sound I would not change my life for anything in the world, and this is the best testament for how I lived, for the great family I have and for the great friends I made, thank you all who have prayed for me. Whomever your God is keep praying, He is on our side! We all have our journeys through the desert but we should never quit walking, life is about turning challenges into adventures, if you can do this at any time you will have a great life, no matter how long it lasts or what happens along the journey.
Thursday, February 14, 2013
Change in MRI Schedule!
After a long year of chemo I have good news to share! I have completed and reviewed my MRI with spectroscopy and perfusion and my tumor has officially disappeared from the MRI, enough for me to move to a quarterly MRI schedule.
In any case my Tumor Board (that's right, when you have a neuro-surgeon and an onchologist treating you you get to call your doctors a Tumor Board!) has decided that I should continue with my chemo cycles. I am getting too comfortable with my health and keep postponing my onchologist visit but since I am not having any side effects whatsoever under chemo we are extending my treatment for another 6 months.
I will do another MRI in March and if nothing is shown that is excellent news! My last chemo cycle was in December and it will probably take me another 6 weeks to start my next cycle, the time between my next consultation and the traditional wait for the Public Health Care system to evaluate my need to extend my chemo and provide me with free drugs.
In the mean time I continue to work hard, exercise and live a full life, if things continue like this my upcoming birthday will be a massive party!
I insist in my belief that the combination of Temodar and exercising is the secret for my cure, this might be just luck or simply the effect of Temodar alone, but if you want to check my theory just go to my latest post on "We Can Think With Glioma" at http://www.wecanthinkwithglioma.blogspot.com.br/.
Time to sleep, really rainy and busy day in São Paulo, but it still feels great to live with glioma, every days feels like a real blessing and now more than ever I need to make everyday count, I hope you do that too!
In any case my Tumor Board (that's right, when you have a neuro-surgeon and an onchologist treating you you get to call your doctors a Tumor Board!) has decided that I should continue with my chemo cycles. I am getting too comfortable with my health and keep postponing my onchologist visit but since I am not having any side effects whatsoever under chemo we are extending my treatment for another 6 months.
I will do another MRI in March and if nothing is shown that is excellent news! My last chemo cycle was in December and it will probably take me another 6 weeks to start my next cycle, the time between my next consultation and the traditional wait for the Public Health Care system to evaluate my need to extend my chemo and provide me with free drugs.
In the mean time I continue to work hard, exercise and live a full life, if things continue like this my upcoming birthday will be a massive party!
I insist in my belief that the combination of Temodar and exercising is the secret for my cure, this might be just luck or simply the effect of Temodar alone, but if you want to check my theory just go to my latest post on "We Can Think With Glioma" at http://www.wecanthinkwithglioma.blogspot.com.br/.
Time to sleep, really rainy and busy day in São Paulo, but it still feels great to live with glioma, every days feels like a real blessing and now more than ever I need to make everyday count, I hope you do that too!
Saturday, December 22, 2012
Happy New Year: One Year After Surgery!
Wow, what a year! I have just returned from my one year consultation with the angel that a year ago removed 95% of my tumor without leaving me with a single impairment. The consultation could not have been better!
Dr. Duffau is a very busy man and somewhat serious, and when I told him that I was feeling better than before my glioma he jokingly asked "should we remove the other side?".
I am now on my 12th chemo cycle and Temodar seems to be doing wonders in my brain. When I decided under D. Duffau's advice not to follow the standard protocol of radio and chemotherapy - I did not undergo radiotherapy - I was aware that I was taking a calculated risk, and the risk paid off! What is now left of my tumor is so little that it can barely be seen in an MRI. There are a few bright spots that I will check in a new, more detailed exam - an MRI with prefusion and spectroscopy. This will help us determine if what I have is dead tissue or left-over tumor. The phenomenally great news I received from Dr. Duffau is that he left the door open for me to interrupt my chemo treatment, something I will discuss with my onchologist and Dr. Ribas after my next exam.
I don't think things could have gone better after this first year. I have never lived life so intensely and cannot complain for a second about my condition:
- I have been having breakfast and dinner with my family everyday for the first time in my life: nothing like living close to work and skipping my crazy triathlon training schedule!
- I play nearly everyday with my daughters at night;
- I work 11 hours a day;
- I have been able to exercise enough to keep me happy - ran two 10k races, biked with friends and alone nearly every weekend and even did my unofficial triathlon;
- I read 12 books from start to finish, from the History of Cancer to the Medieval History of Europe;
- I read my weekly magazines every week, like they are suposed to be read;
- Updated this blog to provide comfort to those that need it, just like others provided comfort to me when I most needed it, and to keep my friends and family up-to-date with my latest updates.
One might ask how is this even possible and my answer is I have never watched so little TV like now. São Paulo is a dangerous city and it is not hard to fill the news with bad news, so I simply decided to ignore it and all of a sudden São Paulo became a liveable and safe city for me! Like FDR said "there is nothing to fear but fear itself".
Of all the factors I could share about my success to date I believe that the most important ones are knowing that I have an amazing family, the best friends in the world and that God is on my side! With all the prayers I have received, including from people that didn't even know me, I don't think things could have been any different. I was never a very spiritual person but after all this it is hard to believe that life is restricted to now, like the agnostic tradition preaches.
Brain tumors are unpredictable, just like life, and I hope to have at least 62 healthy years ahead of me, the 100 years-old mark just seems so cool! But the number of years we live is significantly less important that what we do now, today, and for that I want to thank everyone that has been following me and cheering me up in this journey, I hope that everyone experiences the avalanche of love I have experienced.
In three days we celebrate Christmas and in nine days we enter a new year. It is great to see how all of a sudden people become nicer, more peaceful and wish everyone a great 2013 during the holiday season. The great news is that it is up to us to make it happen, let's keep the Christmas spirit alive for the whole year of 2013 and we might witness the best year in the history of humanity.
Merry Christmas and a Happy New Year!
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!
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.
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.
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