Communication and memory issues are usually the hallmark symptom that initially brings a GBM patient to the ER room where they finally find out they have glioblastoma. Sometimes these symptoms disappear after surgery and/or treatment, but often they plague GBM patients continuously in one way or another. Stroke, seizures and cancer all have a negative impact on functions of the brain.
I’m not a scientist, but I did study special education for a time, specifically working with severe and profoundly mentally disabled children. And though I later chose not to take that career path, I find that what I learned then gives me a lot of helpful perspective in what my husband is going through now. The brain is fascinating and powerful.
The good news is, given time, and if the brain can get ahead of the cancer, it can rebuild itself. There are so many amazing case stories out there just in the stroke community alone. GBM is so fast, it’s hard to get far with brain therapy, but if we can get ahead of the cancer, the rest can come back.
Radiation (and stroke during surgery when an artery was damaged during the procedure) had a negative effect on my husband’s memory. However, about 4 months after completing radiation, it was coming back more. About the time his hair was growing back in! He still struggles with aphasia and apraxia, but it’s getting better.
People often describe a brain cancer patient as being sort of like a child. The childlike part is really more related to what brain trauma does to us. Essentially, the brain sort of resets itself when it’s undergone trauma like that. Not that the patient is a child as much as it’s like a computer (their brain) that’s running through all its files in defrag from the beginning. In other words, the patient is often essentially in a constant state of defrag. The closer to the trauma, the more the brain is simply focused on its greatest needs, just like it is in early human development, whatever those core needs are – that’s what’s fixated on.
Often our more cultured side is stripped out of the equation during that kind of recovery, depending on the location and level of trauma. And if you thought about the phrases used by a GBM patient, that is being interpreted by others as being harsh, too direct, rude or hurtful – in the context of coming out of a 4 year old’s mouth – we would realize we are no longer offended. Because in that context, it makes sense to us. We know that a 4 year old brain communicates a certain way because they have not developed the cultured aspects that an adult brain has to choose from.
To be clear, I’m not saying that a GBM patient is like a child. I’m pointing out how our brain handles damage and trauma. The brain needs what the brain needs. In extreme circumstances, the brain will use whatever means necessary to try to get what it needs, even going primal. It’s a fascinating, living machine.
At its closest to the trauma, bit by bit, the brain runs through its files, finding errors and missing pieces in the pathways. It needs to make patches and recreate new pathways and records. There’s a lot of physical stress and brain racing during these more traumatic stages. And because the entire system is in shock, all processes tend to slow down a bit as resources are allocated.
Getting to deep sleep is imperative for recovery as well. (Melatonin supplementation is highly recommended, both by us and by John’s oncology team.) We’ve also learned that glioblastoma patients often respond very well to the same kind of therapies used with TBI (Traumatic Brain Injury) patients.
The first 3 months were tough with my hubby. His ability to deal with and process emotions was all over the place. I didn’t hear the words “I love you,” “thank you,” or “I’m sorry” at all during that time. I’d say I love you and all he could say was “I know.” And he came off harsh and demanding without a whole lot of his usual nurturing self.
But it came back. I remember the week he first said I love you again. I cried so hard. A little bit later he softened more and started saying, “I’m sorry, I didn’t mean to sound like that, I’m trying to say ____.” Today we have near normal conversation, with some issues from aphasia. And it was only a few weeks ago that I realized his more usual facial expressions were coming back. I hadn’t thought about how they hadn’t really been there in months, but when I starting seeing them again, I realized that’s just one more part of communication that is affected by the aphasia.
However, when he’s tired, or has a seizure (which really sucks the energy out of him), he’s less “adult-ish.” Or if he misses his workout for the day. (Seriously, it helps!) Thankfully, he often apologizes if he’s grumpy.
The neuro psychologist told us it takes an average of 18 months for the brain to recover from a brain trauma like TBI. And obviously GBM is worse.
It’ll come back with time and stimulation. Make activities count. Be forgiving. Give the brain every opportunity to rebuild the broken pathways between records by utilizing a multi-pronged approach to “remember-education.”
It’s not as slow as learning from the very beginning, but it does take time, good diet and deep sleep.
Recovery from brain surgery, stroke and brain cancer is a big deal, no doubt. But it is doable.