Benign Does Not Mean Fine

 I have an Adult Pilocytic Astrocytoma. That's a WHO Grade 1 benign brain tumor. So really, it should be no big deal, right? That's what I thought when they told me, and for nearly a year afterwards. Benign sounds, well, benign right? From Webster's 1828 Dictionary (the only real dictionary 😉):

Benign

BENI'GN, adjective beni'ne. [Latin benignus, from the same root, as bonus, bene, ancient Latin benus, Eng. boon.]
1. Kind; of a kind disposition; gracious; favorable.
    Our Creator, bounteous and benign
2. Generous; liberal; as a benign benefactor.
3. Favorable; having a salutary influence; as the benign aspect of the seasons.
    The benign light of revelation.
4. Wholesome; not pernicious; as a benign medicine.
5. Favorable; not malignant; as a benign disease.

 Doctors seem to want to make you feel like you're doing good, you've got a win, everything's fine. They tell you, "Good news! Its a WHO Grade 1 benign tumor." You walk away thinking you got good news. I mean, I guess it could have been worse news, like it was a Grade 4 and you have two weeks to live, but that doesn't exactly make it good news. I ended up finding out how dangerous, life-threatening, my brain tumor is myself when I was challenged into research more than a year after my diagnosis. No one told me. None of the dozen doctors I worked with mentioned it. The Neuro Radio Oncologist I work with now alludes to it. She says, "You know that the overall survival isn't changed by radiation." That means, if you're going to die in 4 years, radiation isn't going to lengthen that. There is no, let's do this treatment to add a few years, or even a few months to your life. They don't have that for my situation. But even she doesn't come straight out and say that my tumor is dangerous. It's like they want to keep your spirits up by closeting all the potential negatives. Are they trying to avoid hypochondria where you start to feel different symptoms because you learned that you might? Are they trying to make it so that you don't "manifest" a negative outcome? I don't know. I'm sure there's some well-researched reason behind it, but as a patient I find it very frustrating.

 So what's benign about that? Well, it's not malignant. That means it is less likely to duplicate itself or spread to other parts of my body. Not impossible, just less likely. Fun fact, if you do radiation, your tumor is exponentially more likely to become malignant. The thing is, benign doesn't mean safe and malignant doesn't mean a death sentence. In fact, a friend of mine was diagnosed with a malignant brain tumor just months before me and goes to the same tumor clinic I do. She is currently cancer free and has been for two years. Her tumor is gone and, I pray, stays that way. My tumor, on the other hand, will never be gone apart from a miracle of God. There is no medical treatment available that will shrink or remove it. Based on documented history, it will grow. In this admittedly limited example, benign definitely does not mean fine.

 I went hunting around to find things to share with you guys to help explain this and I happened upon this article. It states:

A benign brain tumor involves abnormal growths in the brain that can disrupt essential functions. These tumors can press on critical areas, causing debilitating symptoms, long-term complications, and a significant decline in quality of life. Many patients struggle with symptoms that affect their physical abilities, cognition, emotions, and social interactions. 

  It goes on to list 13 different ways people are affected long-term by benign brain tumors including: treatments and their side-effects, the lack of a return to normal, mobility changes, vision or hearing difficulties, the potential for seizures, hormonal imbalances, mental health struggles, relationship difficulties, cognition or speech changes, and, of course, fatigue. I got to thinking about it and realized that most people probably have no idea about this. On TV and in stories, someone has a brain tumor, it gets taken out, they recover, and then life returns to normal. Turns out that once again the veracity of TV has let us down. So, as I am attempting, somewhat feebly but with great intention, to "Go Gray in May," I wanted to bring this information to your attention.

Here's the Thing: Living with a benign brain tumor isn't easy. On top of all the challenges listed above, you face the bizarre vocabulary that it isn't cancer. Do they treat it with surgery, chemotherapy and radiation? Yes. Can it spread? Yes. Can it kill you? Yes. Is it cancer? No. Oh, then you're fine!