Over the past 3 weeks I’ve learned a lot about brain tumors and brain cancer… more than I ever wanted to know. And, some of the information I probably would rather still not know. But, there is comfort in knowledge, and especially with this: knowing that the science is changing quickly and even in the last few years things have dramatically improved. There is a lot of information online and in the medical literature– but most of it is outdated now, and therefore appears worse than hopefully the reality will be. My type of cancer, called oligodendroglioma, is very rare– and in the past these were included in studies with other types of cancers that are more aggressive. So the information we have found on our own, and even some that has been given to us is hard to interpret in my specific situation… I am lucky to have found a badass cancer team that I trust completely, and I am wholeheartedly going to do whatever they tell me to do, based on the most up-to-date evidence that exists.
From everything I know my summary would be: If you HAD to choose a type of brain cancer to have, mine probably isn’t the best but also not the worst. I also do not recommend googling this stuff… and if you do, certainly don’t talk to me about it. Even though I’m open with what I know, I’m using my family to buffer the information for me… it helps me to be able to talk about it, learn about it, and rise above it. I sometimes need to remind myself that I am more than what is happening this week, this month- I am not a number or a statistic. My path is my own and I plan to make it as long and happy as possible.
The idea is that this will be a chronic illness. Something I now will live with forever. It will likely have ups and downs, which I will deal with in turn. Keep working on moving forward each day and enjoying the time I have as fully as I can, brain tumor or not.