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.