Its kinda crazy how life events can bring your attention to things that you never really thought about before. The brain is so interesting to me now. Anything about the brain and how it affects, well, everything! This photo explains so well why people who develop tumors in different parts of the brain have different deficits. Mikes main deficit (which is the loss of vision on his right side all the way to the center, and he has a hard time reading now) is a result of the empty cavity that is now in his Occipital lobe. We will take an empty cavity where a tumor has been removed over a growing tumor any day!
Often people are diagnosed with a Glioblastoma that is not operable because it is embedded in the brain too far, or is attached to a place in the brain that can cause paralysis. We are still thankful for the location that his tumor was in. They are still watching the location very closely, (at least every 8 weeks with an MRI) because these little monsters like to come back in their original location, or in new locations all together. We are thankful that his treatment is working and there is no regrowth.
With that said, we are so close to celebrating ONE YEAR with no regrowth!! Too many people who get diagnosed with a GBM are not as fortunate to be able to celebrate a year. I think knowing that is what is causing me some anxiety about this next MRI. We are so close to that milestone!!
I know I have said this same thing over and over….but I have to constantly remind myself that there ARE long term survivors and there is no reason that Mike cannot be one of them. I read about long term survivors and there is always a blurb in there about “Only 3% of those diagnosed with GBM live to be long term survivors…general prognosis is 12-14 months” and it cuts me a little in the heart, and gets me emotionally for a second – but then I do the self pep talk that this small percent will be Mike! There is no reason not to have hope and faith.
I will be honest for a minute though. I hear stories all the time in online support groups and via email about others who are newly diagnosed with GBM. I choose to walk the journey with them, I support the caregivers and encourage them the best that I can. I listen to their stories and pray for them. I can’t tell you how many times this year I have been silently devastated by the news that someone loses the battle way too quickly. Its not because they didn’t put up a good fight, or because they didn’t have great treatment. I don’t share these stories usually. I go into a room and shut the door, cry for the loss of that family, cry at the reality that they had the same diagnosis as Mike, pray for them, and for strength for me to continue to have the faith that I need to carry on. I want each person who has lost someone to GBM to know that I do grieve with them. I think about the lives lost.
With Mike’s diagnosis, I am not naive and I try not to mislead anyone in the “general prognosis” of this illness. I never know how to answer when people ask how it is going. Daily “how its going” changes. I can tell everyone that he has NO tumor right now and he is on the path to being a long term survivor. I’m so thankful for that, and it is exciting when I stop and think about it.
As time goes on, I thought we would gain more and more confidence in getting those positive results from the MRI’s. I thought it would get easier. The first MRI’s after his surgeries we were so nervous because we didn’t know what to expect. The next several MRI’s got easier and easier, because we got used to getting good news. The MRI after his seizure had us scared, but again, it was good news. So I don’t know why there has been a shift in our confidence. We have started to get nervous again. Not because there are any new signs. But I guess because we know that the odds say that we should not be getting good MRI’s. The more time that goes by, the more those odds are against us. But I have to remember, God is bigger than any odds. He already knows the plan He has for us, and we have to hold our confidence there. Not in the MRI’s. So every now and then we have a conversation about the reality of the diagnosis, but we try to remain positive and look forward to a great future. We try to make plans and dream of things we want to do or accomplish. We are working on that. We are working on trying to have vision for the future again.
So my simple prayer today is “God, help us to remain positive and restore our ability to have dreams and visions for the future. And please heal and restore all the physical and emotional areas that need it.”
I was only going to post the picture of the brain on the blog because I thought it was interesting, but the blog just got ahead of me.