It’s been a long wait for few answers. While I’ve been told my lesion (not the same as a tumor) is a demylenating lesion (like the insulation coming off a wire and causing inflammation and irritation in the surrounding area), doctors have been unable to provide me with a specific diagnosis, and thus a clear treatment plan.
I’ve undergone brain surgery to obtain a biopsy sample, and I’m doing fairly well, considering the fact that a grape-sized something is stirring up trouble inside my brain stem–pressing on nerves and control centers the monitor everything from my vision and speech to my breathing and walking.
So what should you expect if a loved one or friend is experiencing a brain tumor or lesion similar to mine?
Here are a few of my symptoms. They may not represent everyone’s, but they’ll help you get an idea what life is like.
1. Exhaustion. I tire very quickly. I’m usually asleep by 8:00 at night, and simple tasks like getting up to get a drink of water can feel overwhelming.
2. Emotional outbreaks. I cry very easily, which I’ve learned is very common for those who’ve experienced brain tumors or lesions. I also irritate more easily, partly because simple tasks can seem overwhelming (buttoning buttons, keeping track of my glasses because I take them off 100 times a day because they sit on my incision site).
3. Reduced focus. It’s hard for me to find my clothes in my closet or find a pen on my cluttered desk. I often feel stupid because simple tasks are so much harder for me to do.
4. Pain management. Yes, I can feel the lesion in my head. It’s a weird sense of pressure, but it also causes pain in my face and influences my walking, vision, and other functions. I also struggle with migraines.
5. Mind management. Imagine knowing that you have a sizable “something” (a life-threatening “something,” at that) cuddling up against your brain stem. And it’s taking doctors MONTHS to figure out what it is and what to do with it. It’s a challenge not to micro-analyze every pain and sensation in your body and to focus on details and scenarios that could drive you crazy. My choice is to remain positive and keep moving forward–but it’s a daily choice and battle. And the center of my focus is always the goodness of God–my hope.
So how can you help your friend or loved one?
1. Listen. Don’t feel like you have to provide easy answers or Bible verses. Let emotions roll when they come, and provide comfort and support.
2. Provide safety. Let your loved one know that you’re there for the long haul. You’re not bailing because they’re facing a battle. You’re in it with them. Then show them consistency, compassion, and advocacy when they need your help.
3, Learn. Learn about their illness, it’s treatments, and how you can best provide support along the way. Look for local or online support groups that can help you better understand both your loved one’s illness and your support role.
Have you supported a loved one who fought a battle with brain tumor or brain illness? How were you able to provide support for them? Share your wisdom and experience with us.