I am thrilled to share that after nearly 27 months from when I discovered my glioma my treatment is over! Other than the periodical MRIs to monitor recurrence, which I hope and pray never happens, I am back to life without glioma.
An experience like this changes your life and of your loved ones forever, but believe it or not it can be for the better. You will grow spiritually and will appreciate yours and your brothers' and sisters' lives at a higher level.
I was incredibly fortunate and blessed for my treatment, it was a resounding success. Starting with the surgery where I had all of the grade 3 tumor resected without any neurological impairment, followed by 18 months of Temodar chemo taken with nausendron for nausea. The chemo had absolutely no impact on my quality of life - no nausea or any other bad feeling. I also had Keppra, an anti-seizure medication that had kept seizures at bay. I was feeling so well during chemo that I was able to run a short triathlon during cycle 14 and I swear that during chemo weeks my endurance was up.
This will be my last post in this blog, I want to leave this for anyone that has been diagnosed and is assimilating the news and thinking through all the things that can happen following diagnose. 25 months after being diagnosed, 22 months after surgery and one week after my last chemo cycle I want to share what has worked for me through this journey:
- Clear your mind of bad thoughts - understand that this is not the end but the beginning of a new journey to a mysterious land. Life is unpredictable and this is just a reminder of that, so don't feel that all of a sudden you are mortal because you have always been;
- Focus on support - family, friends, healthcare professionals and fellow glioma patients provided incredible support to me, if it weren't for them and their prayers I would not have been able to stay positive and happy. I will never be able to thank them enough, I am just thrilled to be here to share my story, we can live with glioma;
- Stay focused on life - do as many things as you can to be as close to your pre-glioma life as possible. In my case working-out was my way to feel normal. Running, biking and swimming were key for me, but overcoming my fear of swimming was the best moment, it felt like I left my seizure in the water;
- Exercise during chemo (if you can) - there is growing evidence that exercising helps chemo, I will keep writing on my "We Can Think With Glioma" compiling evidence of potential causes and cures for this malady;
- Exercise your brain - I have never read so many books in my life, from Siddhartha Mukherjee's "The Emperor of All Maladies - a Biography of Cancer" to 14 Volume Arnold Toynbee's "A Study of History". My logic is that nothing like exercising the brain to keep it strong;
- Sleep well - I religiously sleep 8 hours a day for the first year and went to bed as soon as I felt tired. I even left my sister-in-law's wedding (she got married right after my surgery) to sleep as soon as I felt tired and to keep my "8 hours of sleep every night" streak intact. My logic is if the brain recovers at sleep I decided to do it well.
- Eat well - I have always read in sports' magazines that eating a lot of foods with different colors is the easiest way to eat nutritiously. Color can be an indicator of nutritional variation in the food. I used to joke that I only ate things that move, but now I incorporated vegetables and fruits to my diet and I actually feel better regardless of the glioma;
- Thank God for every day you get - my late night prayers of appreciation for everything God has done for me, from the family and friends I have to the doctors and people I met through my glioma, are a reminder that when we decide to help each other life becomes more plentiful and we get closer to Heaven. Building Heaven on Earth is the best way to earn a place in Heaven.
God bless you, stay strong and try to stay calm. At times emotions take over rationality and fear kicks in, this is perfectly normal, but don't let it happen for too long. Every person has a different way of coping with glioma, find what works for you and keep it out of your mind. This is a mind vs. brain game, as long as you can control your mind you will be able to enjoy every day of your life, and I hope you have a lot of life left. I personally would not mind crossing the 100 year-old mark, but this is not up to me, so I live life one day at a time. Focus on the present because yesterday is the past, tomorrow is the future and today if a gift, that is why it is called the present.
Sunday, October 20, 2013
Wednesday, July 10, 2013
2 Years With Glioma
What a journey! Today is my 2nd glioma birthday, exactly 2 years and one day after I had a seizure that led me to my glioma.
While a nightmare at first I still believe that this has been a blessing, I have been living a more purposeful life and have invested every minute of it into something valuable and it still feels like I should invest a lot more time particulalry into friends and family.
Life is always too short when you live well and mine just doesn's stop getting shorter, I still hope to live until I am 100 and I am loving all the scientific contests that revolve around extending life.
Today I see the world differently and many things that I took for granted make no sense to me today. As I listen to crazy nationalistic ridiculous retoric from several countries around cyber-security and privacy I wonder what haven't people learned with the past, before being citizens from any country we are humans and should act like such. To make my point I will share 10 lessons learned with glioma.
I was first supported by several nurses and a dedicated doctor from the Brazilian Northeast, a region from which many migrate to São Paulo in search of a better life. At the crowded public hospital, HGG - Hospital Geral de Guarulhos - where I was taken after my seizure, I learned the value of free health care, one that while not perfect and severely under-funded/mismanaged, is still full of commited professionals who dedicate their lives to taking care of people and that put life ahead of money, lesson #1 learned.
From there I was sent to a private hospital as HGG did not have an MRI machine, it had only tomography equipment, accurate enough to find a mass in my brain. There I learned the value of the dedicated nurses and sensitive people. As I received the news of my brain tumor and fell into a slight depression I was constantly supported by the dedicated professionals who watched me cry for several days. They showed me how privileged I was to be supported by their dedication, and by total coincidence I was taken care of by the same nurse that took care of me at the public hospital. If one hospital job is not enough how about two? Lesson #2, purpose is the most important quality in life and provides the strength to do anything.
Following my time at the hospital I arrived at my in-laws where me and my family were supposed to stay until our move arrived. Our plans changed drastically, we were supposed to move to a friend's rented apartment and had to replan as I had no idea of what to expect from my glioma. Lesson #3, plans are important but don't count on them, they are only plans. When reality hits you have to live it and do the best you can under your circumstances.
For a few days I would cry every time I looked at my daughters until one day I woke-up and thanked God for another day. Lesson #4, don't under-estimate God's power.
As I started living one day at a time I realized the true value of life. Life happens now and as a portrait at my grand-mother's house used to say, "Yesterday is the past, Tomorrow if the Future and Today is a Gift, that is why it is called the Present". Lesson #5, live every minute as if it were your last one.
As I picked myself up from the ground I started researching how to treat my glioma and how long I could live with it. Several strangers helped me more than any doctor could have helped me. The experiences from people like Liz, Scott Vickroy and Mark Green gave me more strength than any statistic or doctor. Lesson #6, the most rewarding help is the one from complete strangers.
As I prepared for surgery and got increasingly scared with the prospect of messing with my brain I was supported by many friends and my wife, who gave me an incredible book of memories and good wishes, not to mention my wrist-band "Força Patrick" that is still hanging in my wrist. Once it falls I will know I am cured and I hope this happens shortly. My College year-end turned farewell party felt like attending my own funeral and I was very proud of the love my friends nurtured for me. As my friend told me, "we sow what we reap". Lesson #7, family and friends are the only treasures that matter in life, cultivate love and friendship and you will get it back when you need it most.
Once in France for surgery I was welcomed by a country and people to whom honestly I had nothing better than prejudice for. I always thought of France as arrogant and unwelcoming from my time working at a French bank and my back-packing trip to France. I would never dream that the country I once despised would be my honor birth-place, where I was saved and treated like a king by the people of the Montpelier University Hospital. Lesson #8, there is nothing to gain with prejudice, rid yourself of generalizations based in one observation and treat every individual like a unique person, most people are good, bad people are exceptions no matter where you are - don't let a bad apple poison the bunch.
Once back to Brazil I rested for 30 days to get my brain back in shape sleeping and reading as much as i could. It was hard to stay home for that long so I used my time to reconnect with as many friends from the past as possible through Facebook. It was great to talk to so many people to whom I had not spoken in a very long time and the uplift I got from it was surely helpful in my recovery. Lesson #9, old friends keep you young and energized to live long, nurture your friendships and even if you haven't talked to your friends get in touch, good friendships last forever.
Now I invest a good amount of time reading, learning and sharing my thoughts in this blog, I hope I live for many additional years (at least 60 so I can break 100!) and that you find these tips helpful, if you are a glioma patient or caregiver you can see there is hope, if you are a friend or a family member just know that I felt every prayer and wishful thought sent my way, I dedicate this blog and the next years of my life to you, if it weren't for you I would not find the strength to be here. Lesson #10, love thyneighbor as thyself.
May this world find the peace I have found through my glioma, being close to death made me more alive than ever, I hope and pray every night for humanity to become one entity, this is truly what God is and if we all try to build Paradise on Earth we can easily get there, it all starts right here right now. Obama, after Snowden's revelation of cyber-security spying I hope you and the NSA crew enjoy this post, peace!
While a nightmare at first I still believe that this has been a blessing, I have been living a more purposeful life and have invested every minute of it into something valuable and it still feels like I should invest a lot more time particulalry into friends and family.
Life is always too short when you live well and mine just doesn's stop getting shorter, I still hope to live until I am 100 and I am loving all the scientific contests that revolve around extending life.
Today I see the world differently and many things that I took for granted make no sense to me today. As I listen to crazy nationalistic ridiculous retoric from several countries around cyber-security and privacy I wonder what haven't people learned with the past, before being citizens from any country we are humans and should act like such. To make my point I will share 10 lessons learned with glioma.
I was first supported by several nurses and a dedicated doctor from the Brazilian Northeast, a region from which many migrate to São Paulo in search of a better life. At the crowded public hospital, HGG - Hospital Geral de Guarulhos - where I was taken after my seizure, I learned the value of free health care, one that while not perfect and severely under-funded/mismanaged, is still full of commited professionals who dedicate their lives to taking care of people and that put life ahead of money, lesson #1 learned.
From there I was sent to a private hospital as HGG did not have an MRI machine, it had only tomography equipment, accurate enough to find a mass in my brain. There I learned the value of the dedicated nurses and sensitive people. As I received the news of my brain tumor and fell into a slight depression I was constantly supported by the dedicated professionals who watched me cry for several days. They showed me how privileged I was to be supported by their dedication, and by total coincidence I was taken care of by the same nurse that took care of me at the public hospital. If one hospital job is not enough how about two? Lesson #2, purpose is the most important quality in life and provides the strength to do anything.
Following my time at the hospital I arrived at my in-laws where me and my family were supposed to stay until our move arrived. Our plans changed drastically, we were supposed to move to a friend's rented apartment and had to replan as I had no idea of what to expect from my glioma. Lesson #3, plans are important but don't count on them, they are only plans. When reality hits you have to live it and do the best you can under your circumstances.
For a few days I would cry every time I looked at my daughters until one day I woke-up and thanked God for another day. Lesson #4, don't under-estimate God's power.
As I started living one day at a time I realized the true value of life. Life happens now and as a portrait at my grand-mother's house used to say, "Yesterday is the past, Tomorrow if the Future and Today is a Gift, that is why it is called the Present". Lesson #5, live every minute as if it were your last one.
As I picked myself up from the ground I started researching how to treat my glioma and how long I could live with it. Several strangers helped me more than any doctor could have helped me. The experiences from people like Liz, Scott Vickroy and Mark Green gave me more strength than any statistic or doctor. Lesson #6, the most rewarding help is the one from complete strangers.
As I prepared for surgery and got increasingly scared with the prospect of messing with my brain I was supported by many friends and my wife, who gave me an incredible book of memories and good wishes, not to mention my wrist-band "Força Patrick" that is still hanging in my wrist. Once it falls I will know I am cured and I hope this happens shortly. My College year-end turned farewell party felt like attending my own funeral and I was very proud of the love my friends nurtured for me. As my friend told me, "we sow what we reap". Lesson #7, family and friends are the only treasures that matter in life, cultivate love and friendship and you will get it back when you need it most.
Once in France for surgery I was welcomed by a country and people to whom honestly I had nothing better than prejudice for. I always thought of France as arrogant and unwelcoming from my time working at a French bank and my back-packing trip to France. I would never dream that the country I once despised would be my honor birth-place, where I was saved and treated like a king by the people of the Montpelier University Hospital. Lesson #8, there is nothing to gain with prejudice, rid yourself of generalizations based in one observation and treat every individual like a unique person, most people are good, bad people are exceptions no matter where you are - don't let a bad apple poison the bunch.
Once back to Brazil I rested for 30 days to get my brain back in shape sleeping and reading as much as i could. It was hard to stay home for that long so I used my time to reconnect with as many friends from the past as possible through Facebook. It was great to talk to so many people to whom I had not spoken in a very long time and the uplift I got from it was surely helpful in my recovery. Lesson #9, old friends keep you young and energized to live long, nurture your friendships and even if you haven't talked to your friends get in touch, good friendships last forever.
Now I invest a good amount of time reading, learning and sharing my thoughts in this blog, I hope I live for many additional years (at least 60 so I can break 100!) and that you find these tips helpful, if you are a glioma patient or caregiver you can see there is hope, if you are a friend or a family member just know that I felt every prayer and wishful thought sent my way, I dedicate this blog and the next years of my life to you, if it weren't for you I would not find the strength to be here. Lesson #10, love thyneighbor as thyself.
May this world find the peace I have found through my glioma, being close to death made me more alive than ever, I hope and pray every night for humanity to become one entity, this is truly what God is and if we all try to build Paradise on Earth we can easily get there, it all starts right here right now. Obama, after Snowden's revelation of cyber-security spying I hope you and the NSA crew enjoy this post, peace!
Thursday, June 27, 2013
A Headache will never be the same and so won't be a clear MRI!
This was an exhilarating but phenomenal week! Weather changed and I had a terrible headache, one that made me barely sleep on Sunday. I have never been the type that complains about headaches, for me to complain about pain it needs to be hair pulling and this was the case. To make things worse Brazilian basketball star Oscar Schmidt, who was diagnosed with a grade 3 oligoastrocytoma two months before me, was all over the news last month as his glioma recurred. It made me wonder if this was my time too and I've never been so anxious before an MRI.
I had my MRI on Monday at 10PM and as always I slept inside the machine. For whatever reason MRI machines have the same effect that TV has on me, it makes me sleep.
As I was dreaming inside the machine the MRI was interrupted and I was waken up to answer a few questions. As I was pulled out of the MRI machine I found myself surrounded by a huge crew of doctors, nurses and administrators. The first thing that came to my mind was "this is it, the damn thing is back!".
First question from the crew was "can you hear us?" as I had ear plugs on. "Yes" I replied and as I stared at them waiting for the freaking question I get a "your MRI was wrong, you need a perfusion and our administrator did not notice it, your insurance does not cover it and you need to pay for it, is that OK?".
Talk about the best way to get bad news, everything is relative and getting a $1,000+ bill instead of a positive recurrence was great. I never thought money would mean so little but it did, my MRI has remained unchanged since my December MRI with perfusion and therefore my tumor did not grow!
As I move on with life I have to confess that my long gone fear of dying came back last week but I am happy to say that it is gone again, I can focus again on life and live in the present, the only tense we should live by. I just read an article about Henry Molaison, a man who at 27 was operated and had his hypocampus and amigdala removed, only to wake-up without the ability to memorize anything for more that 20 seconds. For not having a long-term memory Henry never kept a grudge or resentment. American neurologist Suzanne Corkin wrote a book called Permanent Present Tense about it, of course this will go on my list and as soon as I finish my Study of History I will dive into it, nothing like learning from those that left us precious lessons from the past to apply in the present.
Living in the present is great and is the only certainty we have, not to get too philosophical yesterday is the past, tomorrow is the future and today is a gift, that is why it is called the present.
I had my MRI on Monday at 10PM and as always I slept inside the machine. For whatever reason MRI machines have the same effect that TV has on me, it makes me sleep.
As I was dreaming inside the machine the MRI was interrupted and I was waken up to answer a few questions. As I was pulled out of the MRI machine I found myself surrounded by a huge crew of doctors, nurses and administrators. The first thing that came to my mind was "this is it, the damn thing is back!".
First question from the crew was "can you hear us?" as I had ear plugs on. "Yes" I replied and as I stared at them waiting for the freaking question I get a "your MRI was wrong, you need a perfusion and our administrator did not notice it, your insurance does not cover it and you need to pay for it, is that OK?".
Talk about the best way to get bad news, everything is relative and getting a $1,000+ bill instead of a positive recurrence was great. I never thought money would mean so little but it did, my MRI has remained unchanged since my December MRI with perfusion and therefore my tumor did not grow!
As I move on with life I have to confess that my long gone fear of dying came back last week but I am happy to say that it is gone again, I can focus again on life and live in the present, the only tense we should live by. I just read an article about Henry Molaison, a man who at 27 was operated and had his hypocampus and amigdala removed, only to wake-up without the ability to memorize anything for more that 20 seconds. For not having a long-term memory Henry never kept a grudge or resentment. American neurologist Suzanne Corkin wrote a book called Permanent Present Tense about it, of course this will go on my list and as soon as I finish my Study of History I will dive into it, nothing like learning from those that left us precious lessons from the past to apply in the present.
Living in the present is great and is the only certainty we have, not to get too philosophical yesterday is the past, tomorrow is the future and today is a gift, that is why it is called the present.
Monday, May 27, 2013
What I Learned with Glioma
It has been a while since I last wrote about my glioma, I have suddenly felt an urge to share what I have learned so far. Nearly 2 years after being diagnosed I was discussing with my "twin-brother", the fellow Brazilian operated one day before me at Montpelier, what has changed since our surgery. I now feel prepared to share the key lessons from the incredible experience of feeling mortal and I want to share with those with and without glioma what I have learned so far. Here are my key take-aways:
- Death is a great equalizer and it shows the true value of life: from the moment I was hospitalized at a public hospital in Guarulhos, where as in most public hospitals in Brazil patients vastly outnumber health care professionals, I learned the extreme value that people that live to serve others deliver. The attention I got from the nurses that work for very little, the sympathy from all those that surrounded me during my walk through the desert of my diagnose and most importantly the understanding that we are all living creatures worth exactly the same under Heaven made me have a much better comprehension of life and its value, not only my life but that of every human being and living creature;
- The value of time: time is the most precious gift we have as from it all other gifts derive. I have shared that yesterday is the past, tomorrow is the future and today is a gift, that is why it is called the present. Nothing can be more true, the present is the only certainty we have and we should always respect it as God. Of course we are all humans and as such we are subject to making mistakes, sometimes bad ones, but trying to do good now and learn from our mistakes, which is truly the only value of the past, is our most important mission.
- The eternity of good: history abounds with examples of how doing good outlasts evil. It is no accident that Salomon's kingdom is gone but his religion, Judaism, is still alive for the values it preaches. The same can be said about the Roman Empire, gone, and Christianism, still alive. Another example comes form the Ottoman Empire, gone, and Islamism, still alive. The true value of all religions is setting a foundation for people to put the collective above the individual as God resides in the collection of all individuals and nature, by definition, as He is omnipresent, omniscient and omnipotent. Unfortunately humans ritualized religion and turned a deep spiritual exercise to understand what we are doing here into a set of rituals and divisions to separate one group from another. I just read a brilliant book from a friend that described his spiritual journey while travelling in India. Among incredible descriptions of how he felt God everywhere, particularly at the Ganges River, he pictured a scenario where people would worship themselves. While selfish at first it would lead to a state where no one would blindly follow others to destroy, corrupt or impose values on others in the name of religion. If we all followed the common thread of all religions, not doing to others what we do not wish done to ourselves, the world would certainly be very close to, if not a perfect portrait, of Heaven.
- I was never religious but going through this journey felt a bit like attending my own funeral. In fact a friend shared with me that my College's year-end/"go-away" party right before my surgery was thought to be by many the last time they would see me in good health. I have to say that I am very fortunate to have the best family and friends in the world and for that I am grateful and proud to have lived a great life and for making mostly great choices.
As I mentioned in my first take-away life is about feeling closer to others and to nature, and not about separation or conquest. I was blown away this weekend when I greeted a few people in a condo, where in theory everyone knows each other. The two ladies walking up the street that I greeted almost had a happiness fit for the simple fact that I gave them a good morning. They shared that nowadays no one says good morning and how refreshing it felt to finally get one from a by-stander.
No one knows how long life will last, it can last a few days or several years, I certainly hope for several decades of a healthy and productive life, but the secret to eternal life is to live life while it lasts, and until the last bit of life exists in us we should all do our best to be kind and gentle. Like I taught my daughter while playing basketball with her this weekend the secret to a happy life is not playing to win, but playing to enjoy the game as we will all eventually lose. Life is not about the destiny but about the journey, I really hope you all have a great trip and enjoy the ride, I certainly am enjoying it and I am glad you are part of it.
- Death is a great equalizer and it shows the true value of life: from the moment I was hospitalized at a public hospital in Guarulhos, where as in most public hospitals in Brazil patients vastly outnumber health care professionals, I learned the extreme value that people that live to serve others deliver. The attention I got from the nurses that work for very little, the sympathy from all those that surrounded me during my walk through the desert of my diagnose and most importantly the understanding that we are all living creatures worth exactly the same under Heaven made me have a much better comprehension of life and its value, not only my life but that of every human being and living creature;
- The value of time: time is the most precious gift we have as from it all other gifts derive. I have shared that yesterday is the past, tomorrow is the future and today is a gift, that is why it is called the present. Nothing can be more true, the present is the only certainty we have and we should always respect it as God. Of course we are all humans and as such we are subject to making mistakes, sometimes bad ones, but trying to do good now and learn from our mistakes, which is truly the only value of the past, is our most important mission.
- The eternity of good: history abounds with examples of how doing good outlasts evil. It is no accident that Salomon's kingdom is gone but his religion, Judaism, is still alive for the values it preaches. The same can be said about the Roman Empire, gone, and Christianism, still alive. Another example comes form the Ottoman Empire, gone, and Islamism, still alive. The true value of all religions is setting a foundation for people to put the collective above the individual as God resides in the collection of all individuals and nature, by definition, as He is omnipresent, omniscient and omnipotent. Unfortunately humans ritualized religion and turned a deep spiritual exercise to understand what we are doing here into a set of rituals and divisions to separate one group from another. I just read a brilliant book from a friend that described his spiritual journey while travelling in India. Among incredible descriptions of how he felt God everywhere, particularly at the Ganges River, he pictured a scenario where people would worship themselves. While selfish at first it would lead to a state where no one would blindly follow others to destroy, corrupt or impose values on others in the name of religion. If we all followed the common thread of all religions, not doing to others what we do not wish done to ourselves, the world would certainly be very close to, if not a perfect portrait, of Heaven.
- I was never religious but going through this journey felt a bit like attending my own funeral. In fact a friend shared with me that my College's year-end/"go-away" party right before my surgery was thought to be by many the last time they would see me in good health. I have to say that I am very fortunate to have the best family and friends in the world and for that I am grateful and proud to have lived a great life and for making mostly great choices.
As I mentioned in my first take-away life is about feeling closer to others and to nature, and not about separation or conquest. I was blown away this weekend when I greeted a few people in a condo, where in theory everyone knows each other. The two ladies walking up the street that I greeted almost had a happiness fit for the simple fact that I gave them a good morning. They shared that nowadays no one says good morning and how refreshing it felt to finally get one from a by-stander.
No one knows how long life will last, it can last a few days or several years, I certainly hope for several decades of a healthy and productive life, but the secret to eternal life is to live life while it lasts, and until the last bit of life exists in us we should all do our best to be kind and gentle. Like I taught my daughter while playing basketball with her this weekend the secret to a happy life is not playing to win, but playing to enjoy the game as we will all eventually lose. Life is not about the destiny but about the journey, I really hope you all have a great trip and enjoy the ride, I certainly am enjoying it and I am glad you are part of it.
Monday, April 22, 2013
Don't Let the Future Get in the Way of the Present!
Just had an incredible weekend, 3 days celebrating my 10-Year graduation from business school with great friends, most of which I have not seen in a long time.
I was invited with a few alumni to speak at a panel and share insights with students about how to prepare for the future, from job-hunting to networking and how to better use their time at school. Interestingly we all had wildly different words of wisdom to share, and in some cases diametrically opposite opinions. After thinking of what happened I concluded that the secrets for a student's career do not exist, they lay in the future and each individual has to create and follow their own path. As we search for answers about what to do and the potential outcomes to our future it is easy to forget about the present, particularly in stressful situations such as a glioma diagnose. To quote Ralph Waldo Emerson, whose words are embossed in a wall at my business school, "do not go where the path may lead, go instead where there is no path and leave a trail".
I was reading an interview with Peruvian writer Mario Vargas Llosa and found a quote that inspired me to write. After being asked how the Literature Nobel Prize change his life he said "I continue to do my job, now with a bit more difficulty because the pressure is greater. It is important to keep the illusions and the projects until the last moment to fight against time..."
The greatest philosophical challenges are always sitting in the future, "why are we here?", "what are we supposed to do?", "what is the path to enlightenment?". The reality is that both the past and the future do not exist, we are what we do in the present and therefore I would argue that with or without a glioma the future prospects of a glioma patient and a random walker are similar as they are both uncertain.
A friend of mine went through the painful and powerful process of following and supporting her son's cure from a neuroblastoma and she shared words from hew son's doctor that are worth sharing: "his chances of survival are 0% or 100%, what happened to other kids is completely irrelevant". Luckily for all that love them and for my inspiration he is 100% and is an incredible kid.
If you are diagnosed or go through any form of hardship stop worrying about the remote future and ask yourself how you might improve your life now, don't wait for tomorrow to live a plentiful life. I have changed very few habits after being diagnosed but the habits I changed have drastically affected the way I perceive the world, making me more thoughtful and purposeful. Below are to me the most important aspects of my life that I would recommend for someone under stress:
- Turn off the TV and read more books: what you see in the news is probably irrelevant and has no way to impact your life in the future. We cannot react to the infinite pieces of news that we are bombarded with everyday, so pick an interest and go deep.
- Exercise: use your body as a means of transportation, we were born to run and as such need to remain active to maintain our sanity. It is no accident that the brain releases stamina when we run, the body likes it and recognizes its benefit.
- Think: with the information you accumulate while reading and the lonely time you will get exercising you will have time to process the information and find a way to translate it into your purpose.
- Eat well: my new interpretation of "eat well", which used to be "I only eat things that move", is now "eat as many colors as you can". Minerals in the soil are reflected in the colors of food, so the bigger variety of colors you get (preferably naturally colored) the better you will feel.
- Always remember the 3Fs: family, friends and fun. Don't fall in the trap that work, family, friends and personal time are at odds. We all have busy lives but need to find time for all these pillars, If you like your work, exercise and read you can consider the fun part taken care of. Family and friends will always be there for you when you need them and you should always be available for them when they need you. Being with family and friends is always fun so once again you closed the loop!
When disaster strikes don't worry about the future, look at where you are and focus on your immediate next step to progress, happiness and do what you think is best thing for that moment, and never forget that most likely you will have to live with the consequences of your action, so treat the present and live responsibly.
So much for saying that everyone should find their path to close with a laundry list of things to do to achieve happyness. I hope you build your list and eventually share it with others, I am sure my list will match someone else's list and this might be you.
I was invited with a few alumni to speak at a panel and share insights with students about how to prepare for the future, from job-hunting to networking and how to better use their time at school. Interestingly we all had wildly different words of wisdom to share, and in some cases diametrically opposite opinions. After thinking of what happened I concluded that the secrets for a student's career do not exist, they lay in the future and each individual has to create and follow their own path. As we search for answers about what to do and the potential outcomes to our future it is easy to forget about the present, particularly in stressful situations such as a glioma diagnose. To quote Ralph Waldo Emerson, whose words are embossed in a wall at my business school, "do not go where the path may lead, go instead where there is no path and leave a trail".
I was reading an interview with Peruvian writer Mario Vargas Llosa and found a quote that inspired me to write. After being asked how the Literature Nobel Prize change his life he said "I continue to do my job, now with a bit more difficulty because the pressure is greater. It is important to keep the illusions and the projects until the last moment to fight against time..."
The greatest philosophical challenges are always sitting in the future, "why are we here?", "what are we supposed to do?", "what is the path to enlightenment?". The reality is that both the past and the future do not exist, we are what we do in the present and therefore I would argue that with or without a glioma the future prospects of a glioma patient and a random walker are similar as they are both uncertain.
A friend of mine went through the painful and powerful process of following and supporting her son's cure from a neuroblastoma and she shared words from hew son's doctor that are worth sharing: "his chances of survival are 0% or 100%, what happened to other kids is completely irrelevant". Luckily for all that love them and for my inspiration he is 100% and is an incredible kid.
If you are diagnosed or go through any form of hardship stop worrying about the remote future and ask yourself how you might improve your life now, don't wait for tomorrow to live a plentiful life. I have changed very few habits after being diagnosed but the habits I changed have drastically affected the way I perceive the world, making me more thoughtful and purposeful. Below are to me the most important aspects of my life that I would recommend for someone under stress:
- Turn off the TV and read more books: what you see in the news is probably irrelevant and has no way to impact your life in the future. We cannot react to the infinite pieces of news that we are bombarded with everyday, so pick an interest and go deep.
- Exercise: use your body as a means of transportation, we were born to run and as such need to remain active to maintain our sanity. It is no accident that the brain releases stamina when we run, the body likes it and recognizes its benefit.
- Think: with the information you accumulate while reading and the lonely time you will get exercising you will have time to process the information and find a way to translate it into your purpose.
- Eat well: my new interpretation of "eat well", which used to be "I only eat things that move", is now "eat as many colors as you can". Minerals in the soil are reflected in the colors of food, so the bigger variety of colors you get (preferably naturally colored) the better you will feel.
- Always remember the 3Fs: family, friends and fun. Don't fall in the trap that work, family, friends and personal time are at odds. We all have busy lives but need to find time for all these pillars, If you like your work, exercise and read you can consider the fun part taken care of. Family and friends will always be there for you when you need them and you should always be available for them when they need you. Being with family and friends is always fun so once again you closed the loop!
When disaster strikes don't worry about the future, look at where you are and focus on your immediate next step to progress, happiness and do what you think is best thing for that moment, and never forget that most likely you will have to live with the consequences of your action, so treat the present and live responsibly.
So much for saying that everyone should find their path to close with a laundry list of things to do to achieve happyness. I hope you build your list and eventually share it with others, I am sure my list will match someone else's list and this might be you.
Wednesday, March 27, 2013
Two Months Without Chemo And...
Yesterday I received the best news since my post MRI with perfusion images were evaluated. After finding out that no apparent tumor growth was evident on my MRI from December 28th I stayed for the first time three months without an MRI, changing the frequency at which I check myself out. The results are in and no tumor growth was apparent, same images as my post-surgery MRI from January 2012.
Given my tolerance to chemo and the apparent lack of side effects from a prolonged use of Temodar I am about to begin another 6 cycles of chemo to play it safe, but I hope I am taking it for no reason! As I do my own research and get extra life I get more energized about the prospects of all those afflicted by brain tumors and cancer. Incredibly I started wondering if obesity was just a type of cancer on the fat tissue and the answer might be yes according to Dr. William Li, who presented his angiogenesis theory at a TED conference (http://blog.ted.com/2010/05/17/can_we_eat_to_s/).
The interesting theory he exposes is that cancer might be an abnormal development of blood vessels that grows uncontrollably, hence the successful adoption of Avastin to treat the most aggressive form of brain tumor, glioblastomas. He expresses a theory on eating to starve cancer by essentially preaching a list of different foods that might help combat cancer. While I don't buy that eating well is a recipe for cancer cure I do believe that there is something to be said about trying to eat a menu as diversified as possible. While I lived in the US I have to say that my menu was fairly restricted, the restaurant options around work were limited and I was never the kind of person that took my food to work. In fact I was simply more likely to live by my joke of not eating things that do not walk!
While talking to my wife about flowers she mentioned how different types of soil minerals affect flower colors. I have also read extensively that when choosing food options the simplest way to ensure healthy eating is by having lots of colors on the plate. I would not be surprised if a good variety of minerals in a diet leads to a healthier body, after all we are what we are and got here by being omnivores.
I have shared in my "We Can Think With Glioma" blog that the highest correlation to cancer incidence is latitude - the higher the latitude the higher the cancer incidence. While at first I thought of sun incidence (or lack of) as a potential cause for cancer I am now wondering if the restricted number of food options might be to blame. As humanoids migrated away from the tropics they were confronted with the exposure to seasons and were therefore in need to hunt to survive as picking fruits and vegetables from the ground were no longer an option. This also created the need for farming, a way to produce and accumulate food for the harsh winters, providing fewer but more reliable sources of food. These two factors - lack of sunlight exposure and a more restricted diet - might be factors to be further investigated, but while the infinite number of causes might be to blame the finite number of cancer cures seem to be working better and better, great news to all of us who were abruptly reminded that life in our current form does not go on indefinitely.
In any event to celebrate this great news I am signing up for my first post-tumor triathlon and can't wait to share that experience. While swimming might not seem like the best idea for someone who is still taking anti-seizure medication sitting at home waiting for death to arrive sounds like an even worse option, so to prove that we can live with glioma and hopefully for a very long time I am going to continue to train and tri until I can, I am back and as energized as I have ever been!
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!
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!
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