Today I had an interesting event. Went downstairs with my daughter to roller-skate, something I hadn't done since 2002 when I played street hockey with some B-school friends in Pittsburgh. It is probably not hard to imagine how a 6'4'' feet Brazilian plays street hockey and how "well" I skate. I have ice-skated a bit while in Pittsburgh and that had kept me slightly into the groove.
The interesting fact is that I would always get a little tense before roller-skating or ice skating, something I had always experienced since being a kid without even thinking about it. Funny enough today I felt no tension, which was quite nice.
While I have no fear I did not loose my judgement so I can ride according to my talent, meaning no tricks or high speed riding. I believe this is linked to the removal of my insula and that is why I am sharing this experiece. Today I often question if my tension was due to an over-active insula or if that is how everyone feels before doing something unfamiliar.
Next to test my "system" I took my skateboard. The last time I skateboarded was in 1999 on a trip to Rio. While not talented I could do easy tricks for todays standards such as slides or board flips. Once again no fear and I felt as comfortable on the board as I did when I rode in my teens! Once again no tricks but I might start riding again, possibly with a helmet :-).
I have shared that I might be off chemo depending on the results of my last MRI with perfusion and spectroscopy; results will be in on January 7. Yesterday I went biking in fairly scorching heat (close to 90 degrees) and on my way home a guy on a motorcycle was looking for a street that was about two miles away, with a hill in between. I decided to instead of telling the guy how to get there he should follow me, so back to the road where I ususally ride I went. Riding beside a motorcycle is quite fun, I went much faster than normal but I could tell he was having a much easier time!
When I got home I felt like my head was burning! I forgot to remove my helmet's winter liner and after riding relatively hard for a few minutes on my way back I felt like I had definitely fried what was left of my tumor. Let's see what next week's results say but I continue to feel great and hopefully will remain this way for many years to come! I received a very encouraging note from a guy called Scott that just completed his 5 year surgery birthday and continues to do well, just like so many other glioma survivors such as Liz and Scott Vickroy.
As my blog title says we can live with glioma, and stealling what Scott shared in his note we can also laugh and love, this is what life is about!
May 2013 be a year of big accomplishments, and possibly my first post-surgery triathlon!
Sunday, December 30, 2012
Monday, October 22, 2012
First "Triathlon"
Big milestones! This weekend was awesome, after a great appointment on Thursday with my doctor who seemed more comfortable than usual with me. 10 months after surgery my glioma did not get worse, a great sign considering I had a grade 3 portion in my glioma. I was a little worried because he asked for a more detailed MRI but he made me feel much better after my consultation.
This made me confident that life is back to normal, despite the fact that I am occasionaly haunted by thoughts of what can go wrong. In any case I have to say that I invest 99% of my time thinking about what I can do right today.
On Saturday I had my first glass of wine after surgery, my future syster in law cooked a great meal and I could not dismiss a half glass of wine with it and it felt great. I figured that 5-6 bottles of non-alcoholic beer, the volume I drink at long social events, equal half a glass of wine, so I went for it. Big step and no side effects from Keppra!
Yesterday our kids spent the day with my in-laws so Livia and I went for a nice and easy bike ride. After a few miles Livia felt tired so I left her at a coffee shop and biked home to grab the car. Instead of coming back driving I ran to the coffee shop.
Instead of dragging the bike back we raced back home, Livia on the bike and me running. The day was incredible so we went to the pool and I swam for the first time since I was diagnosed. My fear of having a seizure swimming is over, I swam a few laps and did not feel anything, I think I can survive a short triathlon.
Once I got home I felt a little dizzy, probably from all the spinning in the "empty" part of my brain as I turned my head in the water to breath. I am a two-sided breather so the 180 degree turns in my head might make the spinal fluid in my brain spin a bit.
In any case I feel as healed as I can and biking, swimming and running in the same day felt great, all I need now is to get the sports in the right order and go for it!
Summer is back in Brazil and I am really excited with the prospect of racing a triathlon.
4 years ago I ran my first triathlon in Lebanon, PA, a triathlon called "Got the Nerve". The triathlon is organized to stimulate people of all abilities and disabilities to prove that they can do a lot more than what they believe at first, and from that point I went all the way to a Half Ironman, something I would not have dreamed about previously. The dream continues and I will be back, my mind is in the right place and this is the first step.
This made me confident that life is back to normal, despite the fact that I am occasionaly haunted by thoughts of what can go wrong. In any case I have to say that I invest 99% of my time thinking about what I can do right today.
On Saturday I had my first glass of wine after surgery, my future syster in law cooked a great meal and I could not dismiss a half glass of wine with it and it felt great. I figured that 5-6 bottles of non-alcoholic beer, the volume I drink at long social events, equal half a glass of wine, so I went for it. Big step and no side effects from Keppra!
Yesterday our kids spent the day with my in-laws so Livia and I went for a nice and easy bike ride. After a few miles Livia felt tired so I left her at a coffee shop and biked home to grab the car. Instead of coming back driving I ran to the coffee shop.
Instead of dragging the bike back we raced back home, Livia on the bike and me running. The day was incredible so we went to the pool and I swam for the first time since I was diagnosed. My fear of having a seizure swimming is over, I swam a few laps and did not feel anything, I think I can survive a short triathlon.
Once I got home I felt a little dizzy, probably from all the spinning in the "empty" part of my brain as I turned my head in the water to breath. I am a two-sided breather so the 180 degree turns in my head might make the spinal fluid in my brain spin a bit.
In any case I feel as healed as I can and biking, swimming and running in the same day felt great, all I need now is to get the sports in the right order and go for it!
Summer is back in Brazil and I am really excited with the prospect of racing a triathlon.
4 years ago I ran my first triathlon in Lebanon, PA, a triathlon called "Got the Nerve". The triathlon is organized to stimulate people of all abilities and disabilities to prove that they can do a lot more than what they believe at first, and from that point I went all the way to a Half Ironman, something I would not have dreamed about previously. The dream continues and I will be back, my mind is in the right place and this is the first step.
Monday, September 17, 2012
New 10K Race Complete - Yes We Can!
Yesterday, September 17th, I ran a marathon relay in São Paulo.
When I was at the peak of my obsession with triathlons I never thought that 10K races would be something to celebrate. After watching 36,000 people run yesterday I have to say that I am extremely disappointed with my narrow way of seeing the world back then.
As I looked at people of all ages and walks of life running I have to say that a 10K race is a huge thing to celebrate. Many people in there probably never played sports in their lives, never dedicated time for themselves or thought that leisure was something they've had the right to. My friend captured the moment with one great phrase: "I think a pipe of people just exploded!"
More than celebrating another great athletic weekend I want to highlight the importance of dedicating time to yourself, whether you have a brain tumor, you are a caregiver or simply someone that happened to read this post.
Every morning a guy in my building wakes up at 5:00AM to jog on the tread mill. He lost 50kg (110lbs) after he incorporated jogging to his routine and told me how this has changed his life. He now has more energy, sleeps better and feels better than ever.
It is never late to take back your life, you deserve time for yourself.
A brain tumor is not the end, focus on life and leverage the endorphins of exercising, they will clear your mind from all negative feelings and help you sleep better, free your mind from the eventual fear of the worst and give you energy to continue living.
The best thing that happened last week was the most important mental release I've had since I was diagnosed. Since my diagnosis I have been taking anti-seizure medication. I need to take one pill of Keppra every 12 hours, and have been doing this religiously since my operation. One time I almost freaked out because I did not have my medicine and passed my 12 hour interval from one pill to another.
Last week, as I woke up earlier than usual, I got out of bed and hit the treadmill to use the one hour I gained. When I got back home I realized that I did not take my medication prior to running. I was so happy for it that all my negative feelings simply went away. This was not only my happiest 5K run ever, but my happiest run period!
Exercise if you can, and keep trying if you can't, you can do it! You can do anything you set your mind towards, if you really want something you can get it. The only thing standing between you and your goals is your mind, don't give up on believing in yourself, once that happens anything is possible.
Yes we can enjoy life, exercise and have fun, a brain tumor is not the end, enjoy your time while you can and if you can exercise do it, it will make you more confident, happy and reflective. When you run by yourself you are the only one you can talk to, and you have no idea how much you can learn with yourself.
When I was at the peak of my obsession with triathlons I never thought that 10K races would be something to celebrate. After watching 36,000 people run yesterday I have to say that I am extremely disappointed with my narrow way of seeing the world back then.
As I looked at people of all ages and walks of life running I have to say that a 10K race is a huge thing to celebrate. Many people in there probably never played sports in their lives, never dedicated time for themselves or thought that leisure was something they've had the right to. My friend captured the moment with one great phrase: "I think a pipe of people just exploded!"
More than celebrating another great athletic weekend I want to highlight the importance of dedicating time to yourself, whether you have a brain tumor, you are a caregiver or simply someone that happened to read this post.
Every morning a guy in my building wakes up at 5:00AM to jog on the tread mill. He lost 50kg (110lbs) after he incorporated jogging to his routine and told me how this has changed his life. He now has more energy, sleeps better and feels better than ever.
It is never late to take back your life, you deserve time for yourself.
A brain tumor is not the end, focus on life and leverage the endorphins of exercising, they will clear your mind from all negative feelings and help you sleep better, free your mind from the eventual fear of the worst and give you energy to continue living.
The best thing that happened last week was the most important mental release I've had since I was diagnosed. Since my diagnosis I have been taking anti-seizure medication. I need to take one pill of Keppra every 12 hours, and have been doing this religiously since my operation. One time I almost freaked out because I did not have my medicine and passed my 12 hour interval from one pill to another.
Last week, as I woke up earlier than usual, I got out of bed and hit the treadmill to use the one hour I gained. When I got back home I realized that I did not take my medication prior to running. I was so happy for it that all my negative feelings simply went away. This was not only my happiest 5K run ever, but my happiest run period!
Exercise if you can, and keep trying if you can't, you can do it! You can do anything you set your mind towards, if you really want something you can get it. The only thing standing between you and your goals is your mind, don't give up on believing in yourself, once that happens anything is possible.
Yes we can enjoy life, exercise and have fun, a brain tumor is not the end, enjoy your time while you can and if you can exercise do it, it will make you more confident, happy and reflective. When you run by yourself you are the only one you can talk to, and you have no idea how much you can learn with yourself.
Sunday, August 5, 2012
Human Experiment II - Exercising with Chemo
Today is August 5 2012 and on Friday, August 3, I finished my 8th chemo cycle to treat my glioma.
Last week, pushed by the Olympic spirit, I completed an uphill bike ride that I had been trying for 4 weeks.
When I got home I was exhausted and jelly-legged, but I finished it.
The following Monday I started my 8th chemo cycle, which I finished on August 3rd, Friday.
Today I tried the same hill that crushed me last Sunday, and I have to say that I had a lot left in the tank. I went back to my traditional easy ride in hopes of getting a little longer ride, but when I got there I was surprised by a Duathlon (run-bike-run) competition happening on the road that is usually closed on Sundays for recreational riders. I had to go back home.
Once I got home I felt like doing a Duathlon of my own. I dropped my bike, put my sneakers on and ran to the competition, probably a 2km run. On my way I tripped and fell, getting bruised and cut on my hands. I am lucky and my chemo has not been dropping my red blood cells count and my cuts quickly healed naturally. I got up and kept on running.
The most surprising thing to me is how easier on the body the long exercising routine is during and following chemo weeks. I noticed that when I ran 10k for the first time after my surgery, and that happened during a chemo week. I had been trying to run 10k for a while but my legs would scream.
Somehow chemo seemed to help me run longer, although once done I did not have trouble repeating when I was not on chemo.
Let's see what happens after my next cycle but I will keep sharing what my experience is like.
The interaction between the body and what goes into it doesn't stop to amaze me, I hope this helps my tumor heal as well as it seems to help my muscles heal after exercising.
Last week, pushed by the Olympic spirit, I completed an uphill bike ride that I had been trying for 4 weeks.
When I got home I was exhausted and jelly-legged, but I finished it.
The following Monday I started my 8th chemo cycle, which I finished on August 3rd, Friday.
Today I tried the same hill that crushed me last Sunday, and I have to say that I had a lot left in the tank. I went back to my traditional easy ride in hopes of getting a little longer ride, but when I got there I was surprised by a Duathlon (run-bike-run) competition happening on the road that is usually closed on Sundays for recreational riders. I had to go back home.
Once I got home I felt like doing a Duathlon of my own. I dropped my bike, put my sneakers on and ran to the competition, probably a 2km run. On my way I tripped and fell, getting bruised and cut on my hands. I am lucky and my chemo has not been dropping my red blood cells count and my cuts quickly healed naturally. I got up and kept on running.
The most surprising thing to me is how easier on the body the long exercising routine is during and following chemo weeks. I noticed that when I ran 10k for the first time after my surgery, and that happened during a chemo week. I had been trying to run 10k for a while but my legs would scream.
Somehow chemo seemed to help me run longer, although once done I did not have trouble repeating when I was not on chemo.
Let's see what happens after my next cycle but I will keep sharing what my experience is like.
The interaction between the body and what goes into it doesn't stop to amaze me, I hope this helps my tumor heal as well as it seems to help my muscles heal after exercising.
Saturday, July 28, 2012
Blogging with an Olympic Spirit!
Today is another big day for me! For the last 5 weeks I have been trying to climb a somewhat steep hill near my house only to stop halfway through without good enough legs to keep going.
Yesterday watching the London Olympic Games opening ceremony I was inspired by what so many athletes endure to be there, and here am I struggling to climb a hill. I went to bed determined to beat that hill and I did it. Check out the picture below from the view at the top of the hill. I don't know the elevation but it felt like Mount Everest, and I got to the top of it!
As you can see it is not snow covered but my legs would scream every time I tried going up and today I decided not to quit. I started up a little slower than usual to save my legs for the climb, and it worked.
After learning the story about Great Britain's basketball player Loul Deng I realized that my life is a piece of cake! This kid was born in South Sudan and was driven out of his country by a Civil War. He moved to Egypt with his family and learned the trade with Manute Bol, another Sudanese player that made history in the NBA. Life is about endurance, never quiting, and I am determined to never quit.
I created this page for people with glioma that are into sports. Instead of boring friends and fellow glioma survivors that bear no interest in sports I created this page for those that like it.
A few weeks ago I completed a 10K with a friend and want to keep pushing myself for more. Below is a picture of it. Back in my triathlon days I would run a 10k in 45 minutes, and I have been running 10k in 50 minutes, my pre-glioma training pace. Yes we can run with glioma.
My way back into sports started in March, when I got tired of waiting for life to happen as I watched my bike on the trainer. I wanted to ease my way back into sports as my neuro-surgeon warned me that exercising might increase my chances of having a seizure. I rode my bike on a trainer for 30 minutes on March 25 2012, 3 months after my surgery and right after my third chemo cycle. I had no seizures, this was all I needed to do more.
On May 1st I rode on the road for the first time, and today I finally celebrate climbing the beast, the first hill that beat me (Mount Lebanon Caffeine and Cycling Club, Noblestown Rd. bonking did not count as beating me as I did finish it, albeit with emotional and nutritional support from you!).
So how can the Olympics change the world? I got into cycling through a former boss that got into it after watching cyclists during the Los Angeles Olympic Games in 1984. Fast forward 28 years and here I am climbing a hill thanks to the 1984 Olympic Games, the last games not attended by the best athletes in the world following the Soviet Union's boycott, in retaliation for the sad boycott by the United States of the 1980 Moscow Olympic Games.
I hope politicians learn something from sports, the only people that were victims of these boycotts were the athletes. Several US and former USSR athletes lost their chances to win gold. At least we are better today than we were back then.
With all the violence, war, terrorism and fear-mongering in the Middle East to me the strongest image of yesterday's ceremony was Iran, Iraq and Israel following each other to present their athletes in a civilized, wonderful manner. Yes we will always compete but we don't need to kill each other to be the best, we just need to work hard, respect our differences and let the best one win as we try as hard as possible to live a healthy, plentiful life.
Yesterday watching the London Olympic Games opening ceremony I was inspired by what so many athletes endure to be there, and here am I struggling to climb a hill. I went to bed determined to beat that hill and I did it. Check out the picture below from the view at the top of the hill. I don't know the elevation but it felt like Mount Everest, and I got to the top of it!
As you can see it is not snow covered but my legs would scream every time I tried going up and today I decided not to quit. I started up a little slower than usual to save my legs for the climb, and it worked.
After learning the story about Great Britain's basketball player Loul Deng I realized that my life is a piece of cake! This kid was born in South Sudan and was driven out of his country by a Civil War. He moved to Egypt with his family and learned the trade with Manute Bol, another Sudanese player that made history in the NBA. Life is about endurance, never quiting, and I am determined to never quit.
I created this page for people with glioma that are into sports. Instead of boring friends and fellow glioma survivors that bear no interest in sports I created this page for those that like it.
A few weeks ago I completed a 10K with a friend and want to keep pushing myself for more. Below is a picture of it. Back in my triathlon days I would run a 10k in 45 minutes, and I have been running 10k in 50 minutes, my pre-glioma training pace. Yes we can run with glioma.
My way back into sports started in March, when I got tired of waiting for life to happen as I watched my bike on the trainer. I wanted to ease my way back into sports as my neuro-surgeon warned me that exercising might increase my chances of having a seizure. I rode my bike on a trainer for 30 minutes on March 25 2012, 3 months after my surgery and right after my third chemo cycle. I had no seizures, this was all I needed to do more.
On May 1st I rode on the road for the first time, and today I finally celebrate climbing the beast, the first hill that beat me (Mount Lebanon Caffeine and Cycling Club, Noblestown Rd. bonking did not count as beating me as I did finish it, albeit with emotional and nutritional support from you!).
So how can the Olympics change the world? I got into cycling through a former boss that got into it after watching cyclists during the Los Angeles Olympic Games in 1984. Fast forward 28 years and here I am climbing a hill thanks to the 1984 Olympic Games, the last games not attended by the best athletes in the world following the Soviet Union's boycott, in retaliation for the sad boycott by the United States of the 1980 Moscow Olympic Games.
I hope politicians learn something from sports, the only people that were victims of these boycotts were the athletes. Several US and former USSR athletes lost their chances to win gold. At least we are better today than we were back then.
With all the violence, war, terrorism and fear-mongering in the Middle East to me the strongest image of yesterday's ceremony was Iran, Iraq and Israel following each other to present their athletes in a civilized, wonderful manner. Yes we will always compete but we don't need to kill each other to be the best, we just need to work hard, respect our differences and let the best one win as we try as hard as possible to live a healthy, plentiful life.
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