Christmas Miracle

Interesting that the best Christmas of my life followed a brain surgery to fight a tumor and a tough but inspiring year. I would have never guessed, even in my wildest dream, that I could take 75cc of brain tissue (95% of the tumor!) and 11 days later hop on a plane, with my physical and intellectual abilities intact, and show up to surprise my daughters dressed up as Santa Claus for a surprise appearence on the night of Dec 24th.

I never felt so blessed in my life. The peace that seeing my girls gave me was incredible, they are an endless source of peace, energy and inspiration.
Speaking of energy, today was the first time I got up since my surgery feeling like I wanted to do everything (hence the blog update), I had a ton of energy. I wanted to run the 10 miles between my in-laws house and my parents house, but my doctors yesterday were quick to slow me down regarding physical activity as my brain is still recuperating from the surgery. I will slowly get there. But the source of all this energy came from a single thought when I got up. A turning point after I was diagnosed with my tumor was when I woke-up one day and thanked God for being alive. I might not have been imortal as I originally felt, but I was still alive.
For the last 17 days getting out of bed has been a struggle. I am not sure if due to the pain in my head from the surgery, but I have not been sleeping very well, I have not been waking up fully rested. Today I opened my eyes and thought "hurry-up, the clock is ticking, enjoy life while you have it!". What's so wild about this thought is that it applies to every one of us, but it gave me the boost I needed to feel like I am not in recovery mode, I am in life mode and will live intensely until the end of my tenure on Earth. I invite you to do the same.
I shared a few notes with a friend who highlighted the number of bad things that happened in 2011 to so many dear friends (I suppose my brain tumor could go in this list). The bad things put the good ones in perspective. May all of us have the presence of spirit to recognize the number of great things that happen everyday around us, and if great things are not happening may all of us be an endless source of joy, inspiration, positive energy and love to help us advance life, happiness and the power of the Human Spirit. I hope we can all face adversity with a big smile and show the world that life is what we make out of it, and nothing will slow us down.
May all of us have a great 2012 with plenty of health, peace, love, accomplishments and reasons to celebrate.
God bless you,
Patrick

Round 2

Yesterday I met my neuro-onchologist, introduced to me by my neuro-surgeon, the man that continues to assemble the amazing team taking care of me. I immediately found myself at ease while talking to her, as she patiently walked Livia and I through what my next steps might look like. I've been blessed to be able to be treated by an amazing, world-class medical team. Interestingly the challenges of neuro-onchology are similar to the challenges of childhood cancer. Due to their much lower incidence these types of tumors receive significantly less tumor specific research. They tend to benefit from drugs developed to fight other types of tumors or cancers with higher incidences. This might lower the effectiveness of the treatment, but I am still sure I will win. Like I learned with my friend and hero Max, the most important pillars to help overcome the limitations of Human Knowlegde are to be blessed with amazing families, friends and doctors. My next step is to go through 6 to 12 rounds of chemotherapy with Temodal, and depending on the results possibly radiotherapy. Nothing to be scared of, I am mentally ready, just like I was for surgery, and will thrive. Thank you all for your prayers and positive thoughts, I am 100% sure they made all the difference. Love you all.

Tour of Montpellier

Milestone: 21-12-2011  Went to a restaurant for the first time since surgery.


Finally a little sense of normalcy back.  Took the tram, visited the city (Antigone) and closed the afternoon eating a really nice plate of duck for lunch.  It was great to walk for over a mile, get out of bed and forget about my headache.  Having a saw cut through your skull hurts!  I am getting better! Can't wait to head a soccer ball! (This would be very bad today.  I can live without it.)  My energy is improving and I will be back to normal life quickly.  This is my hope.  My girls need me up and running.  This might take a while but I'll get there!

(from Patrick's own handwriting)

First Post Surgery Update

Milestones 

- Dec 13-11: Resected 95% of my glioma - Thank God and Prof. Duffau's #1 team

Today is Dec 21st and I finally feel in good shape, in good spirits and energized to recap my surgery.

I entered the surgery room very alert and knowing exactly how Prof. Duffau's team could use my help. I went in with my mind set to show all my skills as the team resected my brain. My mission was to highlight any neurological deficits while the brain was stimulated. The first involuntary reaction I had that indicated a non-touch zone after electrode stimulation was a short stretching of a few words, i.e. "dddddddddog". I joked that I sounded like a DJ. To help I also counted in 5 languages while I moved my left side limbs (hand and foot) and the team was able to preserve the healthy and functional part of my brain. They were able to remove a considerable portion of the tumor but there was still a small piece left. The surgery was very delicate and that was why I wanted to be aware to anticipate potential deficits with the medical team. A small portion of the tumor was very close to a stream of motor nerves that control my left side movement. Removing it was Prof. Duffau's last attempt. As he stimulated with electrodes those nerves, my whole left side froze, stubbornly not moving. 

At that point the doctor and I discussed the alternatives, including keeping that piece as a precaution. We agreed to do that.

That was the last surgical act. The results were beyond my expectations. We resected 90% of the tumor without any neurological deficit. There is only one explanation for this: I was in God's hands. Thanks to all of you who prayed and for the medical team who has invested so much of their lives to save people like me. I feel like I was born again. I still have additional treatment (chemo) but this step was as good as possible. I am blessed.

(by Livia from Patrick's own handwriting)

What a Week!

I am now in Montpellier where I met my surgeon, Dr.Duffau, and an anestheseologist, who reviewed my medical history to ensure that I am able to be sedated.

Before I talk about that I want to share how optimistic I am about the procedure, not from a medical stand-point but from all the support I am getting from my family and friends.

This weekend was incredible. It started with a farewell dinner at the office on Friday to send me to France in good spirits. On Saturday, a lunch with dear cousins, my girls and Livia, and dinner with my parents and in-laws at night. Finally a very special event on Sunday. Every year my College friends get together to celebrate the end of another year. This has been happening since we graduated in 1996 and we did it again.

We are a very tight group of friends but this year-end party was special to me. First because I haven't attented it in 5 years, but most importantly because Livia and my friends prepared me an amazing surprise: an album with several pictures, testimonials and love to boost my spirit right before I left, a College coat from our Athletics Association, the source of our friendship. and to top it off a friend brought over 200 wrist-bands with the phrase "Força Patrick", which means "Strenght Patrick". Everyone that attended the party is wearing one today, plus all the family members and friends that we could get these to before I left. What a gift!

In addition to this weekend's events, I received great messages, gifts, amulets (all very meaningful to me and the givers) and two incredible messages from my friends' sons that I wanted to share:
- my friends' 9 year old son asked his teacher if his school could build a chapel for him to pray for his dad's friend. WOW!
- A personal hero, who at only 2 years old went through way more than I am going through now with his mom and dad, asked his mom if I was going to get my hair shaved. He advised me to wear a rainbow wig, those are cool!
I won't let you down, I will get better and will come back with a great rainbow wig!

Now back to Montpellier... What an incredilble city. The people here are extremely friendly, we are feeling really welcome. But the person that impressed me the most was Dr. Duffau. With the extra years of life he has given to so many people and the huge contributions he makes to Neurosurgery, I felt like I was talking to an angel. A calm, peaceful, knowledgeable genius who gave me the confidence that my brain is in the best hands on Earth for God to work his magic.

Trust me, we are doing together everything we can, wish me well, 5 days to go.

I will be hospitalized on Monday, Dec 12, and the surgery begins in the morning of Dec 13.

Merci Beaucoup!

Patrick

Tribute to My People

I wish I could spell-out the names of all the great people I've met in my life, the people that invariably contributed to shape who I am. A lot of them are back, helping me with words of wisdom, support, prayers and positive thinking, keeping my energy at or above my pre-glioma levels.

I got a ride back from work yesterday and my friend said "I don't know how you can remain so calm". I believe that we all need three pillars to keep ourselves together. Below are the three pillars that have helped me before, during and will continue to help me after my glioma so I can always remain centered and positive:

Family - the constant throughout my life, the port I can always sail back to for peace. It got bigger now with wife and the little treasures we had together. My parents, my in-laws, my extended family, always there for me no matter what, with or without glioma. A friend asked me how Livia was dealing with all this. She has always been right by my side, since the first day in the hospital, and even when I was clearly devastated with the news she held tight, giving me strength and "control". But I know this is not easy on her, I can notice her stress getting progressively higher at times, but she continues to hide her anxiety about the future from me and the kids". Thank you so much for always being there for me, even when I lose it in the bad São Paulo traffic, as if she had anything to do with it...
Oh, I have to tell another Isabel story - today I was sitting in the couch showing her how Columbus got to America, how the Portuguese got to Brazil amd how the Brittish got to the US. She suddenly touches my stomach and says "daddy, you are gaining weight, you need to start exercising again" (trust me, I am still a stick, now with guts...). I told her that my commute is too long and my workout time got cut, but that once we move to a house close to work I will be right back. That's when she says "let's go downstairs to play". As soon as we get there she goes "let's jog". She is so intuitive, always reading my mind, like if she realized how much I like to run...

Friends -  I will break this one in two categories...
School and "life" friends - I have seen them sporadically, some more than others, throughout the last 20 years and they always amaze to show me how long friendships can last, how little we change and how wiser we become as we get "experienced" (OK, maybe I am stretching on this one...)
Work friends - Yesterday was my last pre-surgery day at work, and I could not stop thinking about how fortunate I am to be surrounded by people that are unconditionally supportive. Most of the people I have been working with in Brazil know me for less than one year, but it surely feels like a lot more. In contrast my former US co-workers continue to make me feel like I've never left. Not to mention friends from my first jobs, who have magically come back to my life to give me strength.

Good people of the world - every once in a while I am blessed with random acts of kindness, nice words to wish me well from people I've never met.

Thank you all for sticking with me. I am very grateful for having such an awesome circle of people.

Well, in two days I head to France. Wish me well, the first thing I will do after surgery will be to post my status (as long as I remember my password...). Joking about this has been a way to keep it in perspective. This is not the end of the world, it is a whole new beginning!

I love you all!

Battle & Party

This one is going to feel like a novel but it might be the last post before my surgery.

On Monday I did my last MRI - trust me, if positive thinking, peace of mind and praying is what it takes to get rid of this tumor it would be gone by now, and I was so hopeful that this could happen that I only paid for my surgery in advance, as required in France, after getting the results. I guess I still need to add surgery to positive thinking, praying and relaxing...


Nothing unexpected, the overall tumor size remains the same but the grade 3 portion (the dangerous part) grew about 20% in 2 months. No change to my prospects, the plan is still to remove it completely in my surgery with no predicted side effects.

The Battle
I am flying to the battle field on December 5, and all the arrangements have been made for me to win on December 13. We will come back on the 28th and if needed I will follow with additional treatment (physical therapy, chemo, radio etc).

One of the toughest things in all this has been what to tell my girls, to which I seem to become more devoted to the older they get. I am sorry to all other parents, but my girls are the best! Livia and I finally told them that we are going to France in 3 weeks, but we said it was for our Honeymoon! They cried a lot for all reasons (the toughest one being that I am not here for Christmas, the only time that I am with the family for a long time, according to Isabel), but my favorite ones were:

Isabel: "Not fair, you know I always wanted to go to France to meet the Fashionistas"
Isadora: "Not fair, we always had 4 people in the family and now we are only going to have 2"

Back to surgery...

I hope I pass Doctor Duffau's interview that will happen on Dec 7th. He only operates people mentally prepared to go through this, and from the smile on my Doctor's face in Brazil I think I am ready. I am confident I am among the calmest patients he's ever met.

I remain extremely positive and living my life normally, to the dismay of many people I run into that think Cancers and Tumors are death sentences - hey, I did when I was diagnosed. After, between me and Livia, witnessing 6 crimes in São Paulo in 45 days (this is not the norm, just bad luck), from bank robberies to policemen stealing bribes from policemen, I wonder if I should give the people of São Paulo the same look I get when I break the news that I have a tumor. We are all at risk, just different ones.

Advice: be careful with saying that positive thinking, faith, eliminating all sources of stress etc. can cure cancer/tumors - that is simply not true. Every time I am presented with treatment options I look for arguments against them. In this process I read a very interesting blog from a person that lost 2 relatives to alternative cancer treatments, and one quote struck me the most: most alternative cures blame the patient, not the treatment, for the cure.

There is a long-lived quote in marketing that states "only half of my marketing investments work, I just don't know which half". I now believe that in some cancers there there is a similar dynamic - state-of-mind, environment, treatment and most importantly the way one's body reacts to all these factors will determine one's prognostic, but the reality is we still don't know what leads our body to kill and heal itself.

I've been very transparent about my condition, the title of my blog is absolutely about this, we can live with glioma, but most people are not prepared to deal with the news. Thinking about the possibility of death, just like the unknown, is scary (to my Brazilian friends - quem tem cu tem medo), but trying to predict when and how it will happen is as fruitful as trying to guess next week's lottery results.

In the last few months I changed my habits a bit, the time I used to invest training for triathlons is now dedicated to reading and sleeping. I recently read one book about cancer (Anticancer), one about the brain (The Doctor that Cured her Own Brain), and am now reading the most fascinating one, Steve Job's newly released biography.

Interestingly Jobs always lived as if he would not have a long life, his intuition told him that. As a consequence he treated his time and priorities very preciously and the results are obvious - I think he gave his share of contributions to all of us. Like a portrait my Grandmother had in her house, "Yesterday is the past, tomorrow is the future, but today is a gift, that is why it is called the present". My condition is just a constant reminder of this, that is why I feel like I am better than before.

The Party
I want to thank everyone that is following this blog, from the bottom of my heart. Your messages,  words of wisdom, prayers, positive thinking and offers, that many times brought tears to my eyes, are eternal and have made me very strong and positive, I am very grateful to all of you.

I am resolved to come back from Montpellier and have a huge party to celebrate life and you, the people I've been able to meet and stay in touch with. You've shown me how well I've been living my life and why I should keep doing it. I invite you all to do the same, always celebrate life, your family, and your friends. Remeber: Today is a gift!.

Mind vs. Brain

So much about the last 3 months has been about enabling my mind to beat my brain. Fortunately my mind is winning. As my surgery date approaches (Dec 13), I would normally get anxious and worry about the outcomes. The certainty that I am doing the best I can to live a healthy and long life and the reassurance that I have the best support network I could ever wish for gives me the energy to barely worry.

I have been getting notes of support and prayers from people I don't know, and the people I know continue to surprise me and bring tears to my eyes with gestures that are simply incredible.

This week I met a new hero, someone of the stature of my little friend Max (Go Max), who with 2 years old faced a very tough battle and now inspires people in so many places. My new hero operated her brain with the same doctor that will operate me. Her prognostic was tougher as the tumor location affected speech, memory, logic and right side movement as it was large and located on the left side. I simply would never be able to tell what she went through. Today she teaches Marketing at the best MBA programs in Sao Paulo, 5 months ago she was talking to the surgeon as he carved her brain.

The experiences I have been gathering, the recognition of how many people care about me and the new way I look at things have definitely made me better. When I created this blog I included the number 20, to simbolize 2.0, a new and improved version of me. I can't believe how right I was. Family, friends and unkownn heroes all over the world who are fighting your own battles, God bless you.

Treatment Path

Dear Family and Friends,

Sorry for the delay with this update as this is probably the most important one. After analyzing my MRI images my Doctor is very secure that I have a grade III glioma and therefore I need surgical intervention. An alternative would be a biopsy followed by chemotherapy, but since this is also invasive I opted for surgery.

The biggest downside of surgery is the risk of collateral damage (losing movements on my left side, for example). I read about a surgery that can be done while I am awake (intraoperative functional mapping) and became interested in it. This enables the doctor to shut down an area of the brain before removing it. He then asks the patient to move or talk, for example, before removing it. If the answer is yes, he proceeds.

As a coincidence my Doctor returned from a conference in Europe and had a chance to watch an excellent Doctor perform two surgeries using this approach. As he observed him and studied his results (higher resection volume and lower neurological deficits), he is coming to the conclusion that this is probably the best path for me.

Now we are working with this Doctor to find a date for surgery but everything indicates that I am flying to Montpellier, France, in December for surgery. Would appreciate if you could connect me to friends there, if you have any, to prepare the ground.

I am extremelly calm and peaceful with this decision, nearly 3 months have passed since my diagnosis and I don't feel much different, I think I can wait another 3 months.

My dad had a quote from King Solomon that had a very strong effect on me, "We choose our path but God determines our destiny". I hope that I am choosing the best path, I feel extremely fortunate that I was presented with so many great Doctors and that I chose one that was willing to open this new door.

Keep the messages, prayers and thoughts coming, I hope that this is over soon and that we remember this in the future as just another bump in this journey called life.

MRI Update

Just came back from the Hospital, getting used to MRI Machines. I even now know when to stop it as I have a cold and had to caugh a few times during the MRI - counting minutes as the exam goes on, wonder if it changes the results...

Just talked to the Doctor and he said that nothing changed too much since my last exam, I will meet him next week to get more details and discuss next steps.

Thank you all for the prayers, please keep sending me positive thoughts.

Patrick

Seeing the Positives Always!

Two weeks ago my family, rightly so, in essence forced me not to drive anymore worried that I can have a seizure while driving. As I dug into it it turns out that this is the right thing to do, so I am a carless man.

My first reaction was complete shock, how can I live without driving? Then it occurred to me that bus stops are aleays full, people get rides, cabs exist and our family can survive without a second car! So how many positives can I get out of this?

1. I need to find a place to live close to work, saving me at least 2 hours commuting
2. Big savings in gas, car and insurance
3. Walking to work
4. Reducing my carbon footprint!

Anyway I realized in my desperation that I was not abbiding by one of my biggest principles. When one has a life changing event (death, job loss, accident etc) it is very difficult to imagine a better life after it. That is because we have a tendency to look back, and when we do that there is only one path: the one we already took. When we look forward things are much better because we have choices, and they are infinite!

Next message on Sept 17, post MRI.

Cheers!

First Treatment Decision

Today I spoke again to the surgeon that saw me at the hospital. He asked for a tractography of my brain, a really neat image to start planning my surgery.
I shared my concern of having surgery since the only guaranteed way to improve my prognostic through surgery is to remove at least 95% of the tumor, and all doctors agreed that this would bring a very high risk of leaving me paralyzed on the left side. He agreed and shared that the risk was very real but that this is a very personal decision.
I shared that since I am feeling great and didn't have seizures since the one I had on day one I would rather wait and manage the tumor through frequent MRIs until it becomes obvious that I need surgery. He said that as long as I am comfortable, waiting is the best option.
So I scheduled another MRI for September 12th. Stay posted and keep praying and sending me positive thoughts. In the meantime I am determined to melt this thing by channeling all the energy I am getting from my family and friends and keeping my pre glioma routine as best as I can.

Message to my Friends and Family

I cannot thank you enough for all the support, messages, shared stories and the simple fact that you felt comfortable to send a message to me at a difficult moment. I know it can be uncomfortable to reach out in times like this, but rest assured that every note was precious and brought a smile to my face. I know tumors carry a stigma but so far I am incredibly comfortable with what is happening, this is already proving to be a positive experience. Friends that I have not heard from in years reached out, I feel closer than ever to my family and I am really focused and enjoying work. The support I am receiving from every walk of life is unbelievable, I wish everyone could experience the positivity and support I am getting, wonder why it takes something like this for us to share how much we like each other. I encourage you all to send an uncalled message to someone you love to share your appreciation. Finally, no updates on the glioma front, I decided to wait 45 days for another MRI, believe or not I talked to 6 neuro surgeons and 3 recommended surgery and 3 thought it was better to monitor and see how things evolve, and possibly do a biopsy if it gets worse. Since this tumor grows very slowly I decided to wait before I go for surgery. Like my friend said good thing I have an open mind. I know a lot of you are uncomfortable but don't feel so, feel free to ask questions, send emails or simply say that you were thinking about me, every positive thought feeds me with more energy and resolve to beat this and stay around all of you for many years. God bless you.

Moving On

On July 20th I went back to work. It felt so good to get back with life. I had a doctor visit in the afternoon (another pro-surgery opinion) and went back home. Ran 5k very slowly, most doctors told me to take it easy on exercising. This might be the first order I will not follow.
Worked all day the following 2 days, and on Friday afternoon I received the best news - it is OK to exercise as long as someone is with me in case something happens. The funniest thing was to receive calls from my wife and dad asking me to take it easy at work - I always said that working never killed anybody, and I am not about to be the first one. Working really made me feel great. And getting back home to my daughters after a good day was the perfect way to finish, life is good.
Two weeks after my seizure I have to share that I feel like I am totally back on track. The prayers, positive thoughts, messages, support and love I've experienced in the last two weeks reassured me that no matter what happens I am the luckiest man in the world and I will do my best to bring smiles to everyone around me.

Treatment Options

Very quickly I became acquainted with the best Brazilian neuro-surgeons. Once again I could not stop thinking about how lucky I was to be in Brazil when this happened. The doctors I talked to were incredibly accomodating, despite their incredible credentials, and seemed very comfortable with the fact that I was talking and looking for several different opinions. A lot of doctors looked at my case without even meeting me in person. I've also been simultaneously reading every glioma medical scientific paper available on the Internet to learn more about my options. Surgery is definitely at the top of the list but we are still not 100% sure - gliomas are interesting because you really need to get the diagnostic right. Treat a grade 2 glioma as a grade 3 and you lose firepower for when the glioma really turns into grade 3. Treat a grade 3 glioma like a grade 2 and you might have lost a chance to catch it when it's small.
What I know for sure is that I can't remove the whole glioma, at the risk of losing movement on the left side. But I know that removing a large piece of it gives oncologists the best insights for chemo and radiotherapy. I may decide next week what to do (biopsy, surgery or wait and see).

Turning a Negative into a Positive

I got up on July 15 and the first thing that occured to me was thank God I am alive. I was never so determined to make the best out of the time I had left on Earth. After all, with or without a tumor, no one knows how long one will live, so why would I have a different attitude just because I had a tumor? I started looking for inspiration on the Internet from people that live with glioma. Found people in every corner of the world living a healthy, inspiring life, years after being diagnosed. The Astro Fund website (http://www.astrofund.org.uk/) was a particularly helpful source of inspiration, with several great examples of people that live a great life with glioma. The Liz Army blog was also very inspiring, amazing how people I have never heard of became my instant heroes (thelizarmy.blogspot.com).
I was determined to live my life and enjoy every minute of it. At the same time I knew I had to find out more about insular glioma to determine my best treatment options.

Assimilating the News

As people found out about my condition help started coming. Doctor recommendations, support from work, friends visiting, but the thing that really comforted me was knowing that I had a family standing by me. Ironically after living in the US for 10 years I had been back in Brazil for only 2 weeks - really made me pretty certain that there is a very good reason for this to be happening, the chain of events was just too perfect given the condition.
In any case I had a hard time thinking about the future, and every time I thought about my family, particulalry my wife, daughters, mom and dad I would start crying like a baby. I knew I could not live like this. When I got back from the hospital and saw my daughters for the first time after the diagose I cried profusely. They asked me what was wrong and I said that my tear box was full and after a week without seeing them I just missed them too much. I promised my daughter that once I emptied my tear box I would not cry again.

The Diagnostic

I was sent to the ICU with suspicion of bacterial or viral brain infection. Liquor was taken from my back to evaluate my prognostic but I was warned that if exams came back clean most likely I had a brain tumor. I don't think I've ever wished so hard to have a viral or bacterial infection. Spent 2 nights at the ICU and became good friends with the nurses, talking about everything, from basketball to kids, motorcycles and soccer. I only had one hour a day to be visited, so the hospital crew was really important to keep my mind busy. After 2 days the diagnose was ready - low grade insular glioma with 2 suspicious spots that might be turning into a grade 3 - and this means we need surgery.

Nothing prepares a 37 year-old for this kind of news - I went from thinking I was imortal to believing I was on my death bed.

The Beginning

On July 9th 2011 I was at the airport on my way to Pittsburgh when I started feeling numbness on my hands and feet, and lost control of my breathing pace (I thought I was having a heart attack). I got up to wash my face, last thing I remember - I woke up in the Airport Ambulance, found out I had a seizure and was on my way to the Hospital (Hospital Geral de Guarulhos).
Had a taste of what people without means go through to get healthcare in Brazil, and what unknown heroes (nurses, doctors and others) go through to try to help significantly more people than what a Hospital of that size can support. Everybody did their best to help me, I felt really calm there, but I seemed to be the only one comfortable in there. After a few hours (around 3 AM) the doctor finally showed up and shared the results of a brain tomography. He recommended that we immediately go to another hospital to get an MRI - he suspected I had something in my brain.