10 Years with Glioma - Part 1

 My journey started 10 years ago with a seizure that revealed a brain tumor, more specifically a mixed oligoastrocytoma grade 2 and 3.

This journey is divided in never ending phases, where everything is unexpected and unplanned:

Month 1 - Desperation: Without a clue about what I was dealing with, between hearing the words brain tumor and uncurable I thought I had days to live, with no one who has been through this journey to talk to.

Month 2 - Acceptance: Time to figure out what to do about it. Meeting doctors, hearing opinions, evaluating options, and picking a treatment path.

Months 3-4 – Preparation: Time to get ready physically and mentally for surgery, a time when support and prayers from friends and family were of utmost important. I think the best description of this time is “I died and went to my own funeral”, and I was incredibly pleased with what I saw. The support I received from friends and family, personally, through messages and prayer would hopefully be heard by God. 

Month 5 – Surgery time: I have to say that having an awaken craniotomy was quite an experience. If it were not for the time to recover from removing my skull to enable Dr. Duffau to perform his miracle I would do it any time.

Months 6 to 12 – Recovery and chemo: surprisingly, I was able to lead quite a normal life, but that would have never happened if it weren’t for me having very supportive leaders at work, A life changing experience was sitting in line at the public health drug dispensary in Brazil and talking to people while I waited for my chemo drugs. It was an eye opening and humbling experience to see that when you think your world is about to end others faced and thrive through a lot more.

Year 2 – Chemo and observe – the tumor stability and the mild to none side effects made me feel like I beat the tumor. Given my mild side effects, I took Temodar for 18 months, doing a triathlon, switching jobs and moving internationally through it, as if this was all planned for me to be diagnosed in Brazil, where I had an amazing support system.

Year 3 – Observe – easy to become complacent and think the journey is over, but I continued to have quarterly MRIs and that paid-off. My neuro oncologist said I was incredibly lucky as many patients drop their periodic exams after a few years of stability.

Year 4 – Recurrence – Knowing this was bound to happen I did not get desperate or hopeless, I knew I still had the nuclear option – radiation - and luckily right before I was diagnosed with a recurrence PCV was discovered to be an effective treatment for gliomas.

10 Years with Glioma - Part 2

 

Year 5, 1^st half - Another surgery, radiation, vacation and a job change – As I prepared for my radiation treatment my doctor uncovered another cancerous tissue during a pre-operative MRI, leading me into another surgery (EEA – Endonasal Endoscopic Approach) to biopsy the new cancerous tissue. With that we found I also had Langerhans Cell Histiocytosis (LCH) on my occipital bone, something radiation would easily take care of. As I prepared for proton radiation treatment in Philadelphia, after 6 cycles of PCV in Pittsburgh, through which I worked - computer on lap and needle in vein - all along, I found out my employer would not give me the flexibility to work from Philadelphia, and we parted ways. Through that process I found out through the American Cancer Society’s website a very cruel reality of cancer. Many companies fire their employees when they are no longer healthy. This is particularly true for small businesses and big businesses with an aggressive culture. This made me realize how blessed I was and am to work for amazing companies with leaders that have a “People First” mentality. There are simply no words to express how grateful I am to work with incredible leaders, and their support gave me the peace of mind to thrive to very tumultuous times.

Year 5, 2^nd half – New life – Between jobs I was able to do a short motorcycle trip with a friend on rented bikes. That restored my love for motorcycles, and I ended up buying one, only to travel and get face to face with a bear, an experience of a lifetime and another survival moment! After that I watched the Olympics in Rio de Janeiro. Like a friend of mine described it, “at this moment this is the happiest place on Earth”. I not only enjoyed the games but reconnected with friends and family I had not seen in years. Following that I started a new job, one that was offered to me in the coolest possible way. Was riding bikes with my boss, and as we finished climbing the top of Observatory Hill in Pittsburgh he handed me the offer as if it was a proposal. I cannot think of a better was to start a new life. To close the year we had Christmas with the full family and I had the experience of going to a Christian healer, something my aunt really wanted me to do. As we are staring at the stage an older woman dressed exactly like my grandmother used to dress to church nearly every Sunday steps on stage, as if my Nana was there telling me not to worry, everything will be great!

Year 6 – Another amazing year, filled with the joy of watching my oldest daughter really enjoy softball, a family reunion, a great trip to California with my wife, lots of bike rides, including my first Century ride, and my first long motorcycle trip, from Pittsburgh to Montreal and back through Toronto, passing through the Adirondacks and Maine, a trip of a lifetime.

Year 7 – Things only got better, we moved to a new house, I got to coach my oldest daughter’s basketball team, finished a grueling rainy triathlon in 44 degrees of temperature and travelled to Brazil to see my father survive a massive heart surgery. Made me understand how he probably felt when I was going into the surgery room.

Year 8 – Made a spectacular motorcycle trip to Nova Scotia with a friend, filled with mishaps and fun, with the high emotion of losing my wallet and recovering it at the quaint NY town of Poughkeepsie, with the help of legendary BMW motorcycle rally organizer Michael Friedle. Luck doesn't describe how fortunate we were to find my wallet and meet Michael Friedle, who would unfortunately pass only a year later.

Year 9 – The Year of the Pandemic – not all was bad in 2020, I got to spend a lot more time with my family, a great time to reconnect after 4 years working in a different town and only seeing them on Fridays and weekends. But this was probably the year when I have lost the most friends and acquaintances to cancer and covid-19. A sad reality of getting old, but if you think getting old is bad the alternative is a lot worse!

Year 10 – Back to normal? “God laughs at those that have plans”. If there is anything I learned through these 10 years is that there is no better time than now. Like I shared before, yesterday if the past, tomorrow is the future and today is a gift, this is why it is called the present. These have been incredible 10 years, I am sure they made me appreciate life more than if I hadn't gone through this. I was told 10 years ago that I could "even live 5 to 10 years". I made it, and as science progresses I hope I will see the end of cancer, there are countless people dedicating their lives to cure, treat and support cancer  patients. To all of you my most sincere words of appreciation, I could not have done it without you, and for those newly diagnosed never forget that you can live with glioma.

5 Years With Glioma

What a Journey!

5 years after my surgery I am still here, healthier and wiser that I ever thought I could be following my diagnose.

From the anxiety of a brain surgery and the questions that came with it - will I be able to walk? Will my memory be OK? Will my cognitive skills be the same? - to the realization that so many people are going through similar or worse situations and continue to fight through them, I could not feel more inspired and stronger than I am today.

Today I feel like the most blessed person on Earth, I thank God every night for the last 5 years, God always teaches me something new. From the day I realized He conceded me a new day after my diagnose, to everything that happened in between I could not be more grateful.

Being diagnosed with glioma enabled me to see the best in people and realize what amazing family and friends I have. As crazy as it sounds a cancer diagnose is like going to your own funeral. You get to see who suffers with you and your tragedy. You get to see first hand how much you are loved by family and friends, and nothing can describe the feeling of being so overwhelmingly loved and supported. At the same time it was an amazing way to experience first hand the magic of Medicine and the evolution of science. At every step of my treatment only a few years had passed between the inception of my treatment options to me leveraging them, from the awaken craniotomy to the use of PCV to treat gliomas, and the proton-beam radiation treatment.


Today I was listening to the radio when Joe Biden came up and made an emotional speech about the Cancer Moon Shot. Brain tumors are very close to him as he lost his son Beau Biden to brain tumor. Joe very accurately depicted how cancer makes our time horizon get shorter. He talked about the grandparents that only ask for 2 months of life to see their grandkids be born.


From the day I accepted my diagnose to today I only ask for one more day, but I do it every day, and it seems to be working. 5 years after my surgery I have been luckier than 51% of glioma patients my age, and that number is already much higher than when I was diagnosed. In reality statistics don't matter, my and your chances are 0% or 100%, and so far I've been at 100%!


So what are the most important things through my journey? Below is my list:


Family: From the scary call following my seizure to the brain tumor diagnose, my family has always been there with me. The support, compassion and unconditional love from family is a huge blessing. With 14 aunts and uncles, 30+ cousins, a loving wife and amazing in-laws I always felt supported. And my kids, who provide the motivation I need to keep fighting - the thought of not being around for them was and continues to be my number one reason to fight for my life.


Friends: I have absolutely no doubt I've amassed the best friends in the world! From my College Reunion turned send-off trip to France preceding my surgery, to my work friends who supported me unconditionally, prayed and cheered every victory with me I will always be grateful. After hearing so many stories like mine I realized how privileged I am for the support I got from friends of all corners of life. I realized how important it is to choose the right people to come into your life.


Fellow Survivors: I could not have done it without them, they provided the most important thing I could ask for - hope. If all these people survived cancer, in all different forms, why can't I?


Doctors: They are just special people! I continue to be amazed with the stamina, intellectual ability, emotional stability and dexterity it takes to be a doctor. How could so much happen to my brain and I am still here to write the story? I can only thank doctors for going through so much to help people like me. As busy as they always are (not enough doctors for the number of sick people out there) my doctors continue to amaze me with their responsiveness, transparency, sense of urgency and patience.
It is very hard to capture in a few lines what happened over the last five years, but I am so grateful to the doctors that enabled me to be here to write this.


Intellectual Activity: Following my surgery I tried to keep my brain as rested and active as possible. When I got tired, particularly in the 2 weeks following the surgery, I slept a lot. And for the first year I always tried to sleep early to let my brain heal. But when I was idle I always had a book in my hand, I do not recall reading so much as I did during the two years following my surgery, and that was a great choice. During my radiation treatment I also stimulated my analytical skills studying the stock market. My advice is to pick something you like and go deep, especially if you are out of work recovering - much better than sitting on a couch and watching TV.


Physical Activity: As early as possible I tried to exercise. One month after my first surgery I was desperate to run but my skull was still not fully scared, so I ran barefoot thinking that before my head got hurt my feet would be bleeding. It worked! In addition I was able to bike, run and swim through my chemo treatments, except during the last cycle of PCV treatment, when I got nauseated biking.


Work: As soon as I was able to return to work I did, it was very important for me to keep a sense of normality during my treatment. In fact I even worked with a needle in my arm during my vincristine chemo sessions to ensure that this damn thing did not disrupt any aspect of my life.


Looking back the best thing I was able to do during the last 5 years was not to let this thing bring me down. If I had to write a list of the most important things in my life before glioma I would probably come up with the same exact list, excluding the doctors and fellow survivors, but given the circumstances I am happy to bring them into my list.


If I knew then what I know now the one thing I would not have done is agonize about the future. That made the first 6 months of the last 5 years the most agonizing period of my life. With this I leave you with the Life Thread, a really nice story about this simple concept, because yesterday is the past, tomorrow is the future and today is a gift, that is why it's called the present.

Too Much Experience With Glioma, and More...

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.

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!

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.

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.