The average survival rate of someone with a GBM IV is 12 – 18 months. The standard of care (surgery, temodar (chemo), and radiation) helps most patients get close to that average or with any luck beyond. If you’re participating in a trial, maybe that will help increase your time. When you get beyond the average with minimal symptoms you begin to feel invincible. In my case the tumor hasn’t been heard from in nearly 2 years. It’s easy to get too comfortable with your general good health. You take your medication, you ensure you don’t get exhausted, you eat well (with a few fries thrown in), you buy new shoes, you plan a grand vacation with a just a tinge of fear, and you listen to someone talking about another awful terminal illness without cringing.
Then something happens that reminds you of your impending mortality. It could be new or increasing symptoms, an MRI that warrants closer monitoring, news of a fellow GBM warrior losing their battle, people around you being newly diagnosed (how is it possible that I know so many people in my community with a GBM – outside of my social media connections?), hearing your child express her fear (not blatantly connecting it to your cancer) about watching a movie or reading a book where one parent dies, or any number of other things. But the realization is that you ARE going to die…and it may come out of nowhere or it may be 2, 5, 10 years from now. The uncertainty of your fate is almost as terrifying as knowing it.
Then the scrutiny begins. The fear returns. The sense of urgency hits you in the face. Every sign of a possible tumor return is marked down and tallied. Memory lapses, more examples of stammering or forgetting words, moodiness, exhaustion, headaches and so on.
This hyper awareness may make you more sensitive to symptoms that were already there. It may also cause you to completely ignore any other legitimate triggers for these ‘new’ symptoms. It could be a lack of sleep, a busy schedule that requires more focus than usual, medication side effects, normal hormonal cycles, or so many other reasonable and tumorless explanations.
BUT it may be new or worsening symptoms. What if?! What if I have another seizure? What if the tumor is growing again? What if its back and my decline is sudden? What if I haven’t done enough to prepare my family for life without me? So many other ‘What if’s’ flow through your head.
Perhaps it sounds ridiculous to have these thoughts, to be afraid, to panic…but it’s the reality of living with a deadly tumor lurking in your brain. Positive thinking and prayers will do A LOT to give you hope that maybe you won’t be a statistic, but every once in a while the reality of your situation hits you like a semi truck.
So, how can you tell the difference between real or imagined symptoms?