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.