Recently, I saw an article written by Dr. James C. Salwitz, in which he explains why brain tumors are his least favorite cancer.
While he goes into some depth explaining the widespread reach of malignant tumors (50,000 adults are affected each year, with that number growing) as well as the typical treatment options (surgery, chemo, radiation), I believe his main point is one I can really personally relate to.
“This malady is not only challenging to treat, but it attacks in such a personal and disturbing way. It is hard enough to fight a complex disease, but to do it when the ability to focus and understand is disrupted by brain injury is a terrible curse,” Salwitz says.
Personally, I still have most of my cognitive function. But I still have “bad” days. I might have a “so-so” day where it’s difficult to find words do to aphasia – and on that day it’s difficult to talk over the phone or do business with people don’t already know. Or I might have a worse day where I have a migraine and that leaves it almost impossible to do regular activities – like anything on a bright computer screen.
Or I might have a day where I just feel completely out of sorts, unable to focus on tasks for long periods. Especially on those days, I’ve learned that my calendar is my *best* friend. I have one large enough that I can not only write my schedule, but I can go back and write a few words or little sentences about what happened as a mini-journal to help with a sometimes rusty memory.
But of course, I have good days as well. And not just good days, but GREAT days.
And on these great days, I’ve been trying to make the most of my time by doing fun things with the people who mean the most to me. I’ve had an incredibly fun-filled summer with trips to New York City, Cape Cod, and Palm Springs. I’ve seen both Lolita and Manhattan at the out-door Hollywood forever Cemetery Screenings. Seen several great live concerts – including one of my favorite performers, Jack White (despite a migraine – thank you to my Ultimate Ear ear plugs!!). Reconnected with some old friends and made some new ones.
I just wish that on my down days weren’t necessarily “bad” days or “so-so” days, so that I could focus, and concentrate and spend a little more time blogging and sharing these good times and more relevant things I run across with you.
When I was first diagnosed, I scoured the internet looking for brain tumor and brain cancer survivors. Looking for blogs and information. And I found a few, but not many. And they didn’t always have a much information, and they weren’t updated very regularly.
And now I think I understand why.
Of course, in general, it is difficult to keep up with regularly writing a blog. But when on some days you WANT to post, and you have a SUBJECT to post about, but you can’t concentrate or look at a screen long enough to do it, there is an added obstacle.
But one I’m going to attempt to surmount more often. Because my list of potential blog posts is getting too long and they need to get posted ASAP!