And on May 27 2015 we uncovered new tumor growth. Since I've been through 18 cycles of Temodar my neuro-oncologist recommended a new drug cocktail (new to the glioma world but old to the cancer world), PCV - Procarbazine, CCNU and Vincrystine. 6 cycles lasting 6 weeks each were prescribed, and to close I am going nuclear with radiotherapy.
PCV requires a series of dietary restrictions (no foods with tyramine), so I had to eliminate from my diet my favorite staples - cheese, chocolate milk, yogurt and cold cuts were all gone from my diet for 2 weeks out of every 6.
Diet aside I tried to maintain my exercise routine and was able to keep it intact through nearly the whole Summer, but as Fall came I felt nauseous towards the end of a bike ride. To make matters worse PCV was lowering my platelets to dangerous levels and I had to leave my bike in the garage.
As the treatment progressed my platelets kept dropping and in my last 2 cycles I had to delay the start of chemo to enable my platelets to come back to a safe level.
Finally in early March 8th 2016, following the end of my chemotherapy, I went to Philadelphia to prepare my proton therapy. Preparation means making a mask that enables the proton beams to be radiated to the right spots. In the process I also had an MRI and for everyone's surprise I had a new tumor-like image on the tip of my spine, on the right basiocciput. Given the speed at which this new image occurred my neurooncologist, Dr. Jan Drappatz, quickly scheduled a consultation with Dr. Paul Gardner, an experienced neurosurgeon that operates with a technique developed at UPMC - EEA, or endoscopic endonasal approach, to do a biopsy of the newly found lesion.
By March 23 I was having a surgery, and I could not be more pleased with EEA. Basically the doctors inserted an endoscope through my nose and navigated through my brain to get to the tip of my spine and remove as much of the new lesion as possible. The doctors were able to remove 50% of it, a more aggressive resection would have meant losing my ability to move my tongue, and that would be a terrible blow to my quality of life.
To everyone's surprise I have developed a very rare condition - LCH, or Langerhans Cell Histiocitosis. This condition only impacts 1200 people a year in the US, and luckily UPMC has 2 doctors specialized in it.
I have not met the doctors that will help me treat LCH but my neurooncologist shared that my prognosis is good considering I only have it in one part of the body.
Fingers crossed, prayers on, and let's see what science brings me. I am still blown away that only one week ago I had another brain surgery and I am already fully recovered, with virtually no pain or signs that I had a surgery.
I have been incredibly lucky through my glioma treatment, always being at the right place at the right time, I really hope that the trend continues, and that science continues to evolve at light speed to soon develop definitive cures for glioma and other rare diseases such as LCH.
Thursday, March 31, 2016
Thursday, June 18, 2015
Tumor is Back
And somehow my tumor found a way to grow back. I am already beating the statistics for survival time in a grade 3 glioma and as expected, in this race against time, science found a new way to help.
I was diagnosed on May 27 2015 again, nearly 4 years after my first diagnose, and in less than 1 week I was able to get support from my full medical angels to decide on a treatment path.
As soon as I was diagnosed my neuro-oncologist suggested a biopsy to determine the genetic mutations of my tumor and precisely determine its grade.Given the MRI image and my history we agreed that the likelihood of it turning into a gliobastoma was low so I started a new chemo protocol with PCV - procarbazine, CCNU and vincrystine.
After my first cycle I am happy to share that I've had no side effects and in fact I was able to bike for 56 miles 8 days after my vincrystine injection.
I am blessed to have an amazing medical team, the best science at my disposal and a very supportive family to travel this journey with me.
Step 1 was accomplished, I bought enough time to be able to adopt a new, better chemo treatment protocol, and if this is not enough I will start radiotherapy in December.
As crazy as it sounds I was not phased at all by the tumor recurrence, knowing that I did not have to operate the tumor again and finding it while it is still small shows that I will need to stay vigilant forever because it is always better to be safe than sorry. The only additional anxiety point was my potential reaction to chemo but apparently my body once again shows it can take it, I suppose all these years taking care of myself are paying out.
Wish me luck and say a prayer if you read this!
I was diagnosed on May 27 2015 again, nearly 4 years after my first diagnose, and in less than 1 week I was able to get support from my full medical angels to decide on a treatment path.
As soon as I was diagnosed my neuro-oncologist suggested a biopsy to determine the genetic mutations of my tumor and precisely determine its grade.Given the MRI image and my history we agreed that the likelihood of it turning into a gliobastoma was low so I started a new chemo protocol with PCV - procarbazine, CCNU and vincrystine.
After my first cycle I am happy to share that I've had no side effects and in fact I was able to bike for 56 miles 8 days after my vincrystine injection.
I am blessed to have an amazing medical team, the best science at my disposal and a very supportive family to travel this journey with me.
Step 1 was accomplished, I bought enough time to be able to adopt a new, better chemo treatment protocol, and if this is not enough I will start radiotherapy in December.
As crazy as it sounds I was not phased at all by the tumor recurrence, knowing that I did not have to operate the tumor again and finding it while it is still small shows that I will need to stay vigilant forever because it is always better to be safe than sorry. The only additional anxiety point was my potential reaction to chemo but apparently my body once again shows it can take it, I suppose all these years taking care of myself are paying out.
Wish me luck and say a prayer if you read this!
Saturday, August 9, 2014
What to Expect When You Have Glioma
Back in Oct-13 I thought I would stop blogging as my treatment was over but I decided to write again.
A fellow glioma patient who was incredibly helpful to boost my morale after my diagnose (Liz - The Liz Army) wisely shared that there are many glioma survivors but few blog about it, there is a need for more experience sharing and I figured I can contribute a bit more.
Three years after my diagnosis there are a few things that I should celebrate:
- I am as healthy as I was before my diagnosis, both physically and most important mentally;
- When I had my last MRI my new doctor was thrilled with how well my surgery was done and with the fact that the tumor has not grown back;
- On July 9th I stared at my watch's date and could not remember why that was an important date - turns out that July 9th 2011 was the day I had the seizure that led me to discover and treat my tumor. I always looked at the date as my tumor birthday and this year I forgot about it, I suppose the tumor is not as present in my mind as it used to be.
But to think that a glioma will not leave enduring scars is not realistic and I wanted to share some insights as I've noticed that many survivors suffer from the same anxiety points and wonder if the changes we all go through have to do with the tumor, the anti-seizure drugs we took or take, or with the surgery itself as we all removed a chunk of our brains and that must have some side effects right?
These are all valid and real concerns but before I share my experience it is important to remember that this condition tends to hit young adults (let's say ages 30 to 50), being a young adult brings its own change factors so it is hard to dissect what is driven from the tumor and what is simply a natural life stage issue. I will not try to separate these but just share what has changed in my life without judging if it is due to the tumor, the drugs or the surgery. Here is my "what to expect when you're diagnosed" list, one thing that seemed to be common is the fact that everything in your life will be amplified:
1. Friends and family will be closer to you than ever - if you have a tight family and group of friends expect them to be a massive support group. I was incredibly blessed to have been diagnosed in Brazil during my short 2-year work stint in São Paulo. My parents, my school and my College friends were an incredible boost to my spirits and played a big role in my positive attitude, and I cannot forget the support I got from my friends in the US through emails, FB messages and prayers;
2. Financial concerns will become a major issue - I was always the bread winner but my wife and I had to face the possibility of a life without me working. My wife worked hard taking care of the kids and working part-time before my tumor but as the possibility of her needing to be the bread winner came closer she had to work hard to get a full time job;
3. Your perspectives will change - seeing life so close to an end has an incredible effect on how you see the world. Expect to have a greater appreciation for those who devote their lives to taking care of others and those who are just living a simple life. All of a sudden the priorities you were so sure everyone should have become secondary and you learn to appreciate other people's concerns and priorities;
4. Time will become more precious - the possibility of a shorter life makes your time more precious and you might find yourself less patient;
5. Long-term plans become secondary - a surprise like this completely changes the way you think about long-term plans such as retirement and career aspirations, anything beyond next year seems way too far ahead;
6. Your energy level might go down - no matter how active you were before the tumor, the time you spend in bed after the surgery, the exercising restrictions following it and the need to rest to let the brain heal will reduce your energy level. Don't panic, only when you feel ready try to reestablish a work-out routine to boost your energy and get you back to bright, the endorphin released by exercising will help boost your energy so try to incorporate exercising to your daily routine a few months after surgery;
7. Expect occasional anxiety crisis - we live in fairly stressful days and being diagnosed with glioma does not help. Expect to find yourself worried when you have any kind of headache, I found myself feeling them when I had sinus infections and would not relax until my next MRI. This is totally normal but try to focus on other stuff - family, work or any goal that you can create to keep your glioma thoughts at bay;
8. Expect to hear dramatic stories - I've found myself being a sounding board for several people in the middle of their own crisis. When you share that you have a glioma people will open up because they know you can relate to a personal tragedy. Listen carefully and open up too, it is great to get stuff out of your chest every once in a while.
9. Expect to become more philosophical - You will appreciate little things that you've never before appreciated and will not sweat over things that many people would get depressed about - simple things like a walk in the park with your kids or just watching how people interact and what motivates them will become enjoyable experiences but big issues such as losing a job or crashing your car become less important - you can always find another job or fix your car later. You will find that it is very hard to get a piece of news worse than "you've got a brain tumor" and as such you might find it very hard to get phased again by bad news;
10. Expect havoc in the family - all these changes happening so quickly will definitely affect how you interact with your partner and I hope you find one as patient as my wife who has been a trooper through all this and also wondered if all these changes were happening because of the tumor, the surgery or the drugs.
The reality is we all change with time, we all are a product of what we live and this is just another experience that shapes who we are.
My advice to you is to focus on the present, try to live as best as you can one day at a time and always know that God is with you, whether you believe it or not. Right before my surgery I walked into an image of Christ at a top of a hill near Montpelier and that powerful image reminded me that there will always be people that go through a lot worse things than this and still manage to change the world for better. Stay positive, disciplined and focused on your cure but don't let glioma take over your life, we can live with glioma.
A fellow glioma patient who was incredibly helpful to boost my morale after my diagnose (Liz - The Liz Army) wisely shared that there are many glioma survivors but few blog about it, there is a need for more experience sharing and I figured I can contribute a bit more.
Three years after my diagnosis there are a few things that I should celebrate:
- I am as healthy as I was before my diagnosis, both physically and most important mentally;
- When I had my last MRI my new doctor was thrilled with how well my surgery was done and with the fact that the tumor has not grown back;
- On July 9th I stared at my watch's date and could not remember why that was an important date - turns out that July 9th 2011 was the day I had the seizure that led me to discover and treat my tumor. I always looked at the date as my tumor birthday and this year I forgot about it, I suppose the tumor is not as present in my mind as it used to be.
But to think that a glioma will not leave enduring scars is not realistic and I wanted to share some insights as I've noticed that many survivors suffer from the same anxiety points and wonder if the changes we all go through have to do with the tumor, the anti-seizure drugs we took or take, or with the surgery itself as we all removed a chunk of our brains and that must have some side effects right?
These are all valid and real concerns but before I share my experience it is important to remember that this condition tends to hit young adults (let's say ages 30 to 50), being a young adult brings its own change factors so it is hard to dissect what is driven from the tumor and what is simply a natural life stage issue. I will not try to separate these but just share what has changed in my life without judging if it is due to the tumor, the drugs or the surgery. Here is my "what to expect when you're diagnosed" list, one thing that seemed to be common is the fact that everything in your life will be amplified:
1. Friends and family will be closer to you than ever - if you have a tight family and group of friends expect them to be a massive support group. I was incredibly blessed to have been diagnosed in Brazil during my short 2-year work stint in São Paulo. My parents, my school and my College friends were an incredible boost to my spirits and played a big role in my positive attitude, and I cannot forget the support I got from my friends in the US through emails, FB messages and prayers;
2. Financial concerns will become a major issue - I was always the bread winner but my wife and I had to face the possibility of a life without me working. My wife worked hard taking care of the kids and working part-time before my tumor but as the possibility of her needing to be the bread winner came closer she had to work hard to get a full time job;
3. Your perspectives will change - seeing life so close to an end has an incredible effect on how you see the world. Expect to have a greater appreciation for those who devote their lives to taking care of others and those who are just living a simple life. All of a sudden the priorities you were so sure everyone should have become secondary and you learn to appreciate other people's concerns and priorities;
4. Time will become more precious - the possibility of a shorter life makes your time more precious and you might find yourself less patient;
5. Long-term plans become secondary - a surprise like this completely changes the way you think about long-term plans such as retirement and career aspirations, anything beyond next year seems way too far ahead;
6. Your energy level might go down - no matter how active you were before the tumor, the time you spend in bed after the surgery, the exercising restrictions following it and the need to rest to let the brain heal will reduce your energy level. Don't panic, only when you feel ready try to reestablish a work-out routine to boost your energy and get you back to bright, the endorphin released by exercising will help boost your energy so try to incorporate exercising to your daily routine a few months after surgery;
7. Expect occasional anxiety crisis - we live in fairly stressful days and being diagnosed with glioma does not help. Expect to find yourself worried when you have any kind of headache, I found myself feeling them when I had sinus infections and would not relax until my next MRI. This is totally normal but try to focus on other stuff - family, work or any goal that you can create to keep your glioma thoughts at bay;
8. Expect to hear dramatic stories - I've found myself being a sounding board for several people in the middle of their own crisis. When you share that you have a glioma people will open up because they know you can relate to a personal tragedy. Listen carefully and open up too, it is great to get stuff out of your chest every once in a while.
9. Expect to become more philosophical - You will appreciate little things that you've never before appreciated and will not sweat over things that many people would get depressed about - simple things like a walk in the park with your kids or just watching how people interact and what motivates them will become enjoyable experiences but big issues such as losing a job or crashing your car become less important - you can always find another job or fix your car later. You will find that it is very hard to get a piece of news worse than "you've got a brain tumor" and as such you might find it very hard to get phased again by bad news;
10. Expect havoc in the family - all these changes happening so quickly will definitely affect how you interact with your partner and I hope you find one as patient as my wife who has been a trooper through all this and also wondered if all these changes were happening because of the tumor, the surgery or the drugs.
The reality is we all change with time, we all are a product of what we live and this is just another experience that shapes who we are.
My advice to you is to focus on the present, try to live as best as you can one day at a time and always know that God is with you, whether you believe it or not. Right before my surgery I walked into an image of Christ at a top of a hill near Montpelier and that powerful image reminded me that there will always be people that go through a lot worse things than this and still manage to change the world for better. Stay positive, disciplined and focused on your cure but don't let glioma take over your life, we can live with glioma.
Sunday, October 20, 2013
Treatment Over!
I am thrilled to share that after nearly 27 months from when I discovered my glioma my treatment is over! Other than the periodical MRIs to monitor recurrence, which I hope and pray never happens, I am back to life without glioma.
An experience like this changes your life and of your loved ones forever, but believe it or not it can be for the better. You will grow spiritually and will appreciate yours and your brothers' and sisters' lives at a higher level.
I was incredibly fortunate and blessed for my treatment, it was a resounding success. Starting with the surgery where I had all of the grade 3 tumor resected without any neurological impairment, followed by 18 months of Temodar chemo taken with nausendron for nausea. The chemo had absolutely no impact on my quality of life - no nausea or any other bad feeling. I also had Keppra, an anti-seizure medication that had kept seizures at bay. I was feeling so well during chemo that I was able to run a short triathlon during cycle 14 and I swear that during chemo weeks my endurance was up.
This will be my last post in this blog, I want to leave this for anyone that has been diagnosed and is assimilating the news and thinking through all the things that can happen following diagnose. 25 months after being diagnosed, 22 months after surgery and one week after my last chemo cycle I want to share what has worked for me through this journey:
- Clear your mind of bad thoughts - understand that this is not the end but the beginning of a new journey to a mysterious land. Life is unpredictable and this is just a reminder of that, so don't feel that all of a sudden you are mortal because you have always been;
- Focus on support - family, friends, healthcare professionals and fellow glioma patients provided incredible support to me, if it weren't for them and their prayers I would not have been able to stay positive and happy. I will never be able to thank them enough, I am just thrilled to be here to share my story, we can live with glioma;
- Stay focused on life - do as many things as you can to be as close to your pre-glioma life as possible. In my case working-out was my way to feel normal. Running, biking and swimming were key for me, but overcoming my fear of swimming was the best moment, it felt like I left my seizure in the water;
- Exercise during chemo (if you can) - there is growing evidence that exercising helps chemo, I will keep writing on my "We Can Think With Glioma" compiling evidence of potential causes and cures for this malady;
- Exercise your brain - I have never read so many books in my life, from Siddhartha Mukherjee's "The Emperor of All Maladies - a Biography of Cancer" to 14 Volume Arnold Toynbee's "A Study of History". My logic is that nothing like exercising the brain to keep it strong;
- Sleep well - I religiously sleep 8 hours a day for the first year and went to bed as soon as I felt tired. I even left my sister-in-law's wedding (she got married right after my surgery) to sleep as soon as I felt tired and to keep my "8 hours of sleep every night" streak intact. My logic is if the brain recovers at sleep I decided to do it well.
- Eat well - I have always read in sports' magazines that eating a lot of foods with different colors is the easiest way to eat nutritiously. Color can be an indicator of nutritional variation in the food. I used to joke that I only ate things that move, but now I incorporated vegetables and fruits to my diet and I actually feel better regardless of the glioma;
- Thank God for every day you get - my late night prayers of appreciation for everything God has done for me, from the family and friends I have to the doctors and people I met through my glioma, are a reminder that when we decide to help each other life becomes more plentiful and we get closer to Heaven. Building Heaven on Earth is the best way to earn a place in Heaven.
God bless you, stay strong and try to stay calm. At times emotions take over rationality and fear kicks in, this is perfectly normal, but don't let it happen for too long. Every person has a different way of coping with glioma, find what works for you and keep it out of your mind. This is a mind vs. brain game, as long as you can control your mind you will be able to enjoy every day of your life, and I hope you have a lot of life left. I personally would not mind crossing the 100 year-old mark, but this is not up to me, so I live life one day at a time. Focus on the present because yesterday is the past, tomorrow is the future and today if a gift, that is why it is called the present.
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.
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.
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