New Clinical Trial: Triathlon + Chemo!

 

I did it! Yesterday I finished my first post-glioma triathlon, a short but long triathlon. The day was beautiful, the event was awesome and my mood could not be better as I got my brother to join me on his first triathlon.


While scared to swim as seizures are always a ghost to haunt a glioma patient, once I was in the water I felt good. My brother followed me for the first five minutes and then I took off - nothing like a swim-suit to provide comfort, speed and safety!
While not as fast as I used to be I was really happy with the results, not bad at all for an untrained body in the middle of a chemo cycle. For comparison here are the results below (pre-glioma Jackie Kallal tri on June 11th 2011; post glioma Trofeu Brasil on May 12th 2013):

Swim:
Pre-glioma: 18:08 (750m)
Post-glioma: 15:34 (750m)
Bike:
Pre-glioma: 28:57 (15km)
Post-glioma: 45:35 (20km)
Run:
Pre-glioma: 21:59 (5km)
Post-glioma: 25:51 (5km)

As you can see we can run with glioma! Now I really believe that Temodal helps exercising if you are lucky like me and do not to have side effects from it. After every triathlon I would feel a little bit of lactic acid, an absolutely normal post-race condition, but not on this one: no pain whatsoever, I would not be able to tell I raced if I did not know it, aside from a slight knee pain as I have not been running regularly.

In any event the most important victory in all this is to restore an unprecedented sense of normalcy, a feeling that I can finally live a normal life and leave my last ghost behind me: I swam without problems, biked in peace and ran a very happy race, knowing that my brother and I could give our mom the best Mother's Day gift, our lives!

Of course it is scary to have a glioma, and my life or my family's will never be the same after it, but reestablishing pre-glioma life in every aspect of it provides a sense of normalcy that fuels me with more life than ever.

My next MRI is next month, I hope that it comes clean to prove that the combination of exercising and chemo are the magic solution for glioma, but if not no problem, I will continue to live a normal life like we all should, taking one day at a time and enjoying every second of it, there is no time to waste!

Going for it big time!

Yes we can! After a long hiatus triathlon is back, I signed up for a short triathlon taking place on May 12 and am bringing my brother and some friends as a bonus, can't wait to see them shine in the tri scene. They are all making awesome progress training and will now put it into practice, nothing like a BT brother or friend to get you out of the couch.
I have been training easily so to compensate for my slackness I signed up for a bike race, a 45K uphill bike ride on April 28. Should be fun and dangerous, I have never done a bike race so nothing like going uphill to start. Luckily I will be with a friend and it shouldn't be that bad, this weekend I got lost around my house riding and climbed a bunch of hills that long board skateboarders use to go down, quite a contrast!
As I shared in my other blog (We Can Think With Glioma) exercising seems to have a positive effect on cancer so why not take it to the limit and fry my leftover BT with endorphins and heat shock proteins?
It is pretty clear to me that the best thing brain tumor and cancer patients can do is to push their limits, no matter where those limits stand. If you were a professional athlete your limit would be well beyond that of an amateur but we should all strive to achieve our potential no matter what the circumstances are or where we stand relative to others. Don't wait for things to get better to do what you like, just keep trying no matter what the circumstances are and you might accomplish something you have never expected.
Life is too short to waste on things we don't like so focus on what you love and every second you have will count towards a better you. Sports have always been a part of me and there is never a good time to stop, so I will keep running and more until my body stops responding to prove that we can run with glioma.

Getting Ready to Tri!

Another good training weekend, swimming and biking just as I used to. Yesterday I swam as a normal person (not the stationary method where I tie my feet to the pool with an elastic band) and felt better than ever! I don't think I've ever had such a smooth swim stroke, crossing 25 meters in mere 13 strokes, and being able to easily cross the 25 meters without taking a breather, something that was usually hard for me.
Wonder if the removal of brain tissue leads to a lower oxygen consumption rate as neurons are oxygen hogs... Tour de France contenders, I don't believe the UCI tests for brain removal, you might want to try this before it goes on the doping list!
Regardless of the reason it felt great to swim fearlessly and without getting dizzy at the end of the swim. I only swam 1000 meters but nonetheless a swim.
Today I biked with a friend who is probably the strongest biker I know around here and it wasn't as humiliating as I thought it was going to be, although he was recovering from a bad crash. He had a GPS on him and answered a long time question I had: how much climbing was involved in my bike ride. We climbed 440m (about 1000 ft) in a 40K ride, just enough to get me ready for an Olympic triathlon again. It felt great to have a riding buddy again as my latest rides have been lonely as I live far away from my bike buddies.
I haven't ran in a while, need to get back on the wagon, but if everything keeps moving as it is today I might be able to tri this year, this is in the plan and I intend to accomplish it.
We can swim, bike and run with glioma!

Lance is Still Cool as a Cancer Warrior

Yesterday I watched Lance Armstrong's interview and was humbled but not shocked by it. Humbled for seeing someone confess his worse sins to millions of people and apologize for a series of mistakes that are probably eating him up now. What is truly surprising in all this controversy is how long it took for Lance to get nailed. Cycling and probably most sports have a culture of doping since the days of the Cold War when the East and West competed for supremacy by injecting their athletes with sophisticated substances to enhance performance, and battling over new ways not to get caught.
Here we have once again an individual, with all character flaws that humans have, aggravated by a series of events that made him feel above everybody else, having his life investigated and judged by nearly all cycling, sports fans and cancer fighters in the planet.
In a weird way I connected Lance Armstrong to Adolph Hitler after watching a documentary where Hitler's secretary Traudl Junge shares her recollection of the years when she lived with Hitler in a Berlin bunker. Poor Lance, am I now going to call him Hitler? No, the similarities and dangers in both cases start and end with the facts below:
- Both survived "near-death" experiences and believed that God was on their side for that and therefore they were above everything in the pursuit of a mission, and therefore they were never wrong (any similarities to recent Presidents line of thinking are a mere coincidence).
- They have created a legion of blind followers who would not question anything coming from them, from humble people looking for an end to their misery to Heads of State looking for simple solutions to complex human issues such as liberty, poverty and disease.
The first book I read about Armstrong was David Welsh's "From Lance to Landis - Inside the American Doping Controversy". One of the stories Welsh shares in his book is how Lance "mandated" that Trek discontinue Greg LeMonde's bike brand, erasing part of American's cycling history after LeMonde would not testify that Lance was clean (he repeated under oath what he heard from Betsy Andreu). What kind of person does this? Any angry person is subject to making nasty mistakes that will later be regretted, and he was probably very angry because Greg shared what he knew. I side with Greg on this one, between telling the truth or lying under oath I side with telling the truth, not for the oath vote but for the truth itself, which as life teaches over and over always prevails. When I say truth I mean facts, things that ocurred, not about what one believes to be truth, which I classify as faith.
Luckily we are only talking about a bike brand and a few obscure-to-most personalities, but many big decisions are made by individuals during moments of anger that have repercussion much wider than just a bike brand discontinuation. This is where Tocqueville's observation of the wisdom of the masses might prevail, but this assumes the masses are thinking. When people justify decisions based on what others are doing they forfeit the most important human feature of all: free will.
Lance is and will always be an amazing inspiration of cancer survival. While I read Welsh's book I also read "It's Not About the Bike", Lance's life in his own words. His battle against cancer was an amazing one and the work that his foundation performs is outstanding, and we should never forget that there is always another side to any story. Looking at the Livestrong foundation's operational expenses (assuming they are real) Livestrong raised since its inception US$470 million, US$65 million of which only in 2011. This is a massive organization with people trying to make a difference, but as in every organization it needs checks and balances. Check out for yourself where the money goes:
http://www.livestrong.org/What-We-Do/Our-Approach/Where-the-Money-Goes
Every time I donate money I check how much of it is going to its cause and how much of it is used simply for its existence. If you believe the balance is good continue to give, if not keep the money for yourself, but don't blame Lance for giving him your money, we are all individuals with free will and we cannot blame anyone but ourselves for all the decisions we make, including the organizations we support.
Beware of super-heroes, they only exist in fiction but every culture in every corner of the planet has myths of heroes, so there is something inherently human about waiting for heroes to rescue us. My advice is that if you want a different world start by changing it yourself. Lance was trying to change the world in his own many times flawed way and many lined-up behind him to do so, leading to good and bad things. This is life, good and bad as always, let's keep trying to make it better than worse.

The Importance of Never Giving Up

On Sunday I went out to run 50 minutes, time over which I usually run 10km. By minute 40 I ran out of steam, the 92 degree heat in the Sun was too much to handle, but I could not get over the fact that I did not finish the 50 minute tun I was planning.
Tonight (Tuesday) I was back on the road to finish what I started. The temperature was lower (86 degrees) and I ran in the dark and rain, definitely fresher than it was on Sunday.
For the first time since my surgery I ran for one hour, time over which I would normally run 12 km. I did not have a GPS on me to manage speed or distance, but hitting the one hour mark was an important milestone on my road to removing all my mental barriers.
My next milestone is to start swimming, tonight was raining and I did not want to get wet!
Anyway I hope this helps you understand that if something doesn't work out simply don't give up unless you know for sure that you have set an impossible goal or mission. Without knowing that the one hour mark was impossible I went out and did it.
One hour run, important milestone, many more to go. We can run with glioma! Half Marathon here we go!

Exercising to Cure Brain Tumor

Wow, what a ride! On Friday I received exams from a detailed MRI (with spectroscopy and perfusion) to assess whether I can interrupt or not my chemotherapy as my last MRI showed that my tumor did not grow since my surgery one year ago, and that I might be eligible to a watch and see approach. Watch and see?
While I haven't met my neurosurgeon to discuss if we could wait based on the latest MRI as he is on vacation until Jan 15 I read the technician's report to try to understand on my own what is going on.
I might be a little paranoid but two comments called my attention:
1. "One of the samples, adjunct to the posterior aspect of the surgical cavity, shows evidence of a discrete elevation of the peak hill (sorry if I butchered this one but I am not sure what is the exact translation of pico de colina) in relation to the hill, compatible with an increase in membrane turn-over, while maintaining the NAA/creatine relationship, unspecific pattern that might be related to a scarring process or eventually to the presence of a residual lesion/relapse. No evidence of abnormal peaks".
2. Thickening of the mucus layer of the paranasal cavities, with retention/polyp cysts on the maxillary sinus, being larger on the right side
The first comment freaked me out a bit with the "presence of residual lesion/relapse", or in other words the tumor could be back. The second one freaked me out with the word "polyp", particularly larger on the right side, the side of my brain tumor.
The brain can play games with us and we need to control it. In my case I have always had a feeling of water in my right ear resulting from an ear infection from when I was about 15 years old, consequence of ocean water that got into my ear. I still need to swim with ear plugs to prevent infections but the feeling of a bad ear has always been there, but now I had a reason: "polyp"!
So I did what I had to do in that situation according to my treatment book. Got on the bike on Saturday morning, under a 33 C heat (92 F) with my poor brother who just started riding, and climbed a few steep hills close to my house to get rid of the damn polyp. What an unfair treatment to my brother but as a 23 years-old he should be able to chase his 38 years-old brother. I suppose my 5 years biking were enough to break his 5 weeks biking, but he is loving it and I am loving to ride with him! If age meant anything I would not get my ass kicked by my uncle and by the MLCCC crew, many of who while approaching 60 would always kick my butt too! And people think there is an age where one can be called old. This is what I call the state-of-mind barrier, think of yourself old and you become old, think of yourself sick and you become sick.
On Sunday I ran 6K under similar heat, that should take care of the polyp. In fact I felt much better than before, nothing like exercising to cure cancer!
Today I went into the Internet to check what exactly retention/polyp cysts on the maxillary sinus meant, and here I find that it meant nothing more than something that might occur in any sinus infection.
Anyway all this preamble is meant to help me share that I truly believe that exercising can cure cancer and I will continue to subscribe to my Heat Shock Protein (HSP) treatment theory. If an increase in HSP production can help the body regenerate damaged DNA I will get back on the wagon as I have not since I was diagnosed. I am heading to the pool and will get ready for my first post brain tumor triathlon. No matter what I cannot let this thing slow me down, to the contrary I need to act quickly to prevent my life from running away from me.
I hope that 2013 brings new treatments and cures to this scary condition but that in the meantime we can all fight the good fight to get better. My father once again taught me a great lesson through his numerous Facebook posts: "Without an adversary courage languishes. It is only clear how great it is and how far its power can go when it shows, as it handles suffering, what it is capable of. It is worth knowing that good people should do the same thing: do not panic when facing adversity nor complain about destiny; whatever happens take it as a good thing, convert it into a good thing; what matters is not what you face, but how you face it." This was written by Seneca, on Divine Providence.
Ops, I was going to hit the pool but it is too late and it shut-down, so I'd better go to bed and get some rest in hopes of running tomorrow morning.
A positive attitude is everything in life, I had no idea of how great a world we are living in from a historical perspective. I just finished reading two great books, "A History of the Nations and Empires Involved and the a Study of the Events Culminating in The Great Conflict", by Logan Marshal, and "1943 - Roosevelt and Vargas in Natal", by Roberto Muylaert. It is simply amazing what a man with polio was capable of, I am more convinced that ever that Roosevelt was right, there is nothing to fear but fear itself, and he proved it over and over. We all have abilities far beyond we give ourselves credit for, and while we have life, with or without cancer, we ought to live life to the fullest, and while I can run, ride and swim I will do so at will, without of course forgetting my lovely family, friends and job!

Noticeable Change Post Surgery - No Fear!

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!

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.

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.

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.

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.