Offensive Thinking

Guest Blog Post: Living with Oligoastrocytoma

Posted: 2015-11-17

At a Stone Beach in Canada

I’ll make it short today: Check out my guest blog post over at Spero for Cancer. The original title was “Preparing for the Inevitable”, but I guess it didn’t fit the theme :). I’m mainly touching two topics I want to write about in more depth here when I find the time: Working out (I already did so in 2013, I think an update is in order), meditation, and what both have to do with cancer.

Disclaimer: I am not affiliated with Spero nor do I endorse their app in any way. I didn’t even had the chance to test it yet, as there is currently no Android version available. They just asked nicely if I would write a guest post, so I did.

Update 2018-03-27: Apparently, Spero went the way of so many other startups and vanished, at least the article is not online any more. So here it is as it was published in their blog, for completeness sake.

LIVING WITH OLIGOASTROCYTOMA

As in every proper cancer blog post, first the background: I was diagnosed with a malignant brain tumor (Oligoastrocytoma grade III) in February 2011. I had a tonic-clonic seizure in the middle of the night, ambulance to the hospital, MRI and EEG to check what happened. They found the tumor in my left frontal lobe, surgery was scheduled for about a week and half later. Got about 90% of the tumor removed. The problem with brain cancer is, you cannot just cut out with a safety margin like with other cancer types, as you need your brain to be as intact as possible (well, at least most of us do, let’s leave politicians out of this for now). The last 10% were just not worth it.

There are also always more tumor cells in the surrounding tissue, so without a complete removal of my brain (what would you even call that? Cerebrectomy?) the risk does not outweigh the benefits. Since then I did a round of Chemotherapy with Temodar directly after surgery and just recently Radiotherapy, both of which went rather well for me. The most obvious side effect is the hair loss from Radiotherapy, but I can live with that. Being bald can actually be quite liberating and I’ve grown to like the look.

I believe one of the hardest parts of a brain cancer diagnosis is that you just have to accept that whatever you do, you will not be able to get rid of the cancer and things will never be the same. Sure, there are statistics telling you when you are considered “healed” and we are talking about “cancer survivors”, but deep down every patient knows that someday, their cancer might come back.

For some cancer types the statistics are better, for some they are worse. With brain tumors (like Oligoastrocytoma), the question is usually not if, but when it returns. They also very often mutate to a more aggressive type where at least the statistics still talk about months and not years to live (mind you, statistics can never give a qualified prediction of your individual case, which is why every professional oncologist will deny you a definitive answer to the question “How long do I still have?”). There is this feeling of helplessness because it is completely out of your control.

So, should we just give in and do nothing, as it doesn’t really matter? No way! I might not be able to control cancer itself, but I can control how I treat my body and mind. I was always very active sports-wise, so I started to do strength training three times a week as soon as I could walk again (which I couldn’t after surgery, by the way, because of a hemiparesis of my right side). At 6’2″ (189 cm), I went up from my meager 140 pounds (64 kg) to a more healthy 174 pounds (80 kg) by watching my diet and training hard.

I feel that the more resilient I make my body, the better I can cope with whatever my brain tumor will try to do next. I also like to imagine I can intimidate it by making myself as strong and healthy as possible, so that it is scared of putting up a fight with me. It’s all just imagination, but it helps me to feel better.

I also started to meditate a couple of months ago, which is the equivalent for my mind, as it makes me more resilient against stress and whatever negative thoughts I might have regarding my outlook on life with a brain tumor. I always tell people that I have no idea when I will die, but I’m pretty confident of knowing what the cause of my death will be. Which can, in a strange and twisted way, be kind of comforting.

Please be aware that I do my strength training and meditation practice not only because I have cancer, but first of all because I love doing them. I guess what I want to say is: I know I cannot control my cancer, but I can control my cancer story. Anyone can.