Advocacy Improves My Cognitive Impairment Caused By My Brain Tumor
Last updated: May 2023
I was diagnosed with lung cancer with metastasis to the brain five years ago. Now my cancer is under control. My body has adjusted to this new normal with the side effects of my treatment. I've also overcome the stigma, shame, and embarrassment of having lung cancer. I feel comfortable in my skin, except for the troubles I've had with my brain tumor. It takes a long time for our brains to recover.
My brain impairments cause me trouble in 2 ways: 1) difficulty to verbally express myself (expressive aphasia*), and 2) loss of my memory (chemo brain).
Language impairment caused by my brain tumor
My brain tumors are at the left anterior regions of the brain, known as Broca's area, which is responsible for language production. It's believed later that it also plays a vital role in language comprehension.
I have done four Gamma Knife procedures during my cancer. Due to the location of my brain tumor, the Gamma Knife procedure was detrimental to my language production. I stuttered and couldn't find the right words to complete the sentence. Note that the Gamma Knife procedure is the better option for my brain tumors comparing with whole-brain radiation. When I spoke, nobody understood me, even myself. This was because my speech sounded like a telegraph, but the keywords were somewhat there. But when people spoke, I could understand them well.
And then there's the memory loss
I only have one chemotherapy at the beginning of my cancer. Soon after that, I kept forgetting things even after several minutes. It was so bad that I couldn't count back from 10 to 1 for two years. The phenomena are called chemo brain or brain fog. It happens quite often for patients with chemotherapy.
After three years I was sick, I started to read again. In the beginning, I could only read straightforward sentences because I couldn't remember what I read before if the sentences were too long or the sentence structure was too complicated.
My husband became my translator
So, when I spoke, the sentences were like a telegraph with wrong words and poor sentence structure. I couldn't remember things occur to me soon after. It's frustrating.
Interestingly, my husband is the only one who can not only understand me but also becomes so skilled to translate my "ill-grammatical and half-finished sentences" into a complete sentence that I exactly want to say.
Suffering from expressive aphasia and memory loss
The self-awareness of impairment language and severe memory loss can lead to frustration, loss of confidence, and social withdrawal. I was a professor before I got lung cancer. Teaching and research are what the professors do, and I was damned good at it. But lung cancer robs it from me. I could not express what's in my mind. When I talked to my children, they couldn't understand me, but they didn't want to show it because they didn't want to make me upset. It breaks my heart.
I tried to talk slowly or write down my speech, but I couldn't, no matter how I prepared it. When I talked to my lung cancer friends, they pretended they didn't notice my stuttering, which was probably the best way they could react. They were so kind, but I knew my speech was horrible.
Also, I couldn't remember even what I want to say just a few minutes before. When I had something important, I had to interrupt people; otherwise, I would forget. I gave people the impression that I was rude. Eventually, I stopped talking. I was frustrated and embarrassed. I was self-isolated and struggled quietly.
Addressing the elephant in the room
Recently, I was thinking about opening up my language difficulty (expressive aphasia). At the beginning of the spring, I organized a Zoom meeting. For the first time, I mentioned that I stuttered due to my brain tumor. At that moment, I felt a great deal of relief -- the elephant has finally come out. It's so crucial for me to say it out loud. From then on, not only I talked about my stuttering but also I felt ok about it. And surprisingly, I've stutter less since then.
I will not allow my cancer to define me
I need to talk. I'm more determined to speak up in front of people and to make my experience public. I want people who suffered from expressive aphasia, to know that even if you stutter and can't find the right words, you can still speak in front of the public. I belied that we have to be comfortable about ourselves, and practice makes speaking better. Don't give up. People are genially understanding and forgiving. If you feel like to talk about expressive aphasia, don't be shy, go ahead and talk about it. From my experience, expressive aplasia can be improved.
I don't know if my brain impairment will recover, but I will not let stuttering, losing the proper words and my compromised memory define me, just like how lung cancer does not define me either.
*Note: I have not been formally diagnosed with expressive aphasia by a pathologist. Rather I self-diagnosed by reading WIKIPEDIA.
Beside manner matters! What has your experience been?