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JOIN USPublished on May 29, 2024 in Survivor
In 2022, at the age of 31, Ana H. began experiencing sporadic migraines and sinus infections. One day, while at work as a speech language pathologist, Ana felt a bad headache coming on.
“Suddenly, my vision starts to go, and I tell my co-workers to come into my office because I can’t even see anymore,” Ana said. “Thankfully, they were in the room with me when I had a seizure, and they called the ambulance.”
Ana’s parents and sister immediately left Texas to be at Ana’s bedside at a hospital in Chicago when they learned doctors found a golf-ball-sized tumor in the middle of her brain, later determined to be a central neurocytoma.
“I think because my brain was so swollen, I couldn’t process much, especially complex feelings,” Ana explained. “It was maybe a week after my brain surgery, once I was out of the hospital being taken care of by my mom, that I had the feeling, ‘That was so close. I could have come out of that so much not myself anymore.’ I had to go excuse myself to my dark recovery room, and I just cried for a while.”
“Benign doesn’t mean it’s fine,” Ana explained. “I noticed in the very beginning that everyone is very understanding of your limitations and what you can and can’t do. But I’m a year and three months out, and this far out, people forget that this can be a very long-term thing.”
With a lot of structure and consistent life changes, Ana has been able to adjust to her new reality. Still, it can be frustrating to hear “Oh, you look great” from friends and colleagues when she is navigating significant changes.
Another challenge was when Ana’s friends offered to connect her with someone they knew who had a brain tumor, but that person’s tumor was cancerous and had undergone radiation. She felt guilty about reaching out to the patient as a result.
“I felt guilty to reach out consistently or seek support because I know benign isn’t fine, but she had been through so much more,” Ana said.
Ana needed to get another MRI shortly before she was to be released from the hospital after surgery. She wanted to ask when she would leave her room to go to the MRI but kept asking the nurse, “When do I get out of here?” As she grew frustrated with her inability to phrase the question correctly, the nurse offered her a notepad to write it down. No matter how hard she tried, she could only write down the same sentence repeatedly.
“I only remember snippets of my time in the neuro ICU,” Ana said. “But I remember not being able to express basic things. I remember knowing an idea I wanted to express, but finding the words was like grasping in a black abyss. The abyss was infinite and my words were nowhere to be found. I could reach as much as I wanted to, but I couldn’t find my words. It was the strangest feeling. I was experiencing all the stuff that I’d heard of in grad school.”
When word finding is that much of a struggle, a patient has limited options available to express themselves, according to Ana:
Once the patient is further into recovery, there are a few strategies to help when the patient struggles to find a specific word repeatedly, such as their address or a relative’s name.
“You have to make it more meaningful to you and think about whatever it is more dynamically,” Ana explained. “Because the idea there is that you’re building as many meaningful connections into your brain so that it’s more accessible. I think one of the really basic rules of brain plasticity is neurons that fire together wire together.”
In the example of struggling to recall a person’s name, a patient can try visualizing where they were when they met, remembering a favorite memory, thinking of their perfume or cologne, or recalling a feeling from a previous interaction with that person. Use as many senses as possible to create a connection.
“The way that I think of the brain now and senses is that our brain is very literally in a dark box with no connection to the outside world,” Ana said. “Its only connection to the outside world is through our senses so use as many senses as you can to make whatever that thing that you’re frequently forgetting more meaningful.”
If a person finds it hard to recall a street name, they can try writing the first letter on their palm, using their finger to write for sensory input. They can also look at their palm while starting to write for additional input.
Ana’s first language was Spanish, and she started speaking English around three or four.
“Depending on when you learn your two languages is where they’re mapped in your brain,” Ana said. “If you learn both of them at the same time, then they’re mapped basically at the same space. If you learned the second language pretty early in childhood, then they’re probably mapped, maybe overlapping pretty closely together. The older you were when you learned the second language, the farther apart they’re mapped.”
Immediately following surgery, Ana found it easier to communicate in Spanish, likely because it was her first learned language. As she could handle more, English became easier for casual conversation, which is the language she uses most frequently.
“Especially with work, English is the easiest,” Ana said. “In my career, everything has been in English. When I go and work with families and schools where I use my Spanish a lot, that is still challenging because it’s speaking professionally and about science in Spanish because it’s the skill I acquired the latest between all of my languages.”
Before her surgery, Ana used to easily translate between the two languages. Now, the act of translating something tires out her brain for hours despite taking time to rest.
“I still can’t flip between the two languages as easily as I used to even if it’s like something casual, much less translating for work,” Ana said.
Sensory sensitivities are relatively common for people living with a brain tumor and can significantly impact their quality of life. They can affect one’s sight, hearing, touch, and smell. The nature and extent of these sensitivities depend on several factors, including the location of the tumor and the type of treatment received (such as surgery, chemotherapy, or radiation).
“Imagine all of your senses as highways from the outside world into your brain,” Ana said. “Everything was magnified after surgery, and so much was coming in all at once.”
Her biggest tip for patients and their support network is categorizing sensory experiences as pleasant or unpleasant.
Ana explained, “When someone asks, ‘What does it sound like? What does it taste like?’ That is a lot of having to explain things that can be hard to describe, even with a full brain capacity. Just label things pleasant and unpleasant. If it’s unpleasant, get rid of it. When I’m sensory overloaded, my brain almost starts to feel kind of numb. So, to pull more information out of myself when I’m in that state takes so much more effort, and it’s not important. It’s just important that we get rid of it or we decrease it in that moment.”
For Ana, she struggled with sound sensitivities in the aftermath of her diagnosis and surgery. When co-workers would talk in the same room as Ana, her post-surgery brain couldn’t help but process what they were saying and the implications of their conversation.
“One thing that I noticed, especially in the earlier months, is we don’t realize how much our brain inhibits sensory input,” Ana said. “It kind of shuts us off from paying attention to everything. That’s why background noise is even a thing that we can understand. Our brain doesn’t process all the noise in a similar way. Typically, our brain knows what to turn off and what to tune into. In the beginning, after surgery, our brain, if it’s limited, can’t always prioritize sound, so it just feels like a giant flood of sensory input.”
To manage this sensitivity, Ana purchased several inexpensive foam earplugs and keeps pairs around her home, car, coat pockets, purse, and office to ensure they are available whenever she needs them.
Ana also experiences light sensitivity, particularly when it comes to bright lights.
“Even now, I’ll get into an Uber, and there are screens everywhere,” Ana said. “I literally have to either try to turn it off or ride with my eyes closed because it’s too much light, and it’s way too much stimulation.”
She will use a sleeping mask in situations like a flight where there might be too much visual stimulation.
One of the biggest changes Ana made following her diagnosis was allowing her brain to genuinely rest.
“We think things that are pleasant to us are technically rest, but the world is so much more overstimulating than we realize,” Ana shared. “Let’s say we want to take a break at work and sit on our phone and scroll because it’s downtime, and we want to catch up on a few things. For your brain, it’s still really overstimulating.”
Getting outside and taking a walk can help give a person’s brain a break.
“There are certain things I look into for brain health,” Ana said. “One of the important things is movement and then genuine connection, so I make sure to spend time with people I care about at least once or twice a week. I prioritize and don’t spend time with anyone who I don’t feel is a true connection and truly stimulating.”
In addition, Ana found she needed quality sleep to help her get through the day.
“My memory really suffers the most when I’m tired, so I do probably four or five different things to sleep,” Ana shared. “It’s not just the length of it, but the quality of it that matters so much to how we’re functioning. If I didn’t get good rest, especially in the beginning, I could not do anything the next day, as far as being productive.”
Ana takes sensory breaks in various ways when she experiences sensory overload. She finds her brain gets the rest it needs when she sits down in a dark, quiet room.
“My dark room was super important in the beginning, as I used it every day for the first two weeks,” Ana shared. “As you go throughout the day, and you’re living in this world that has such high sensory demands, at some point your brain gets overloaded. The dark room decreases inputs and essentially gives your brain a break from any sensory input.”
Ana’s story is a powerful reminder that recovery is a marathon, not a sprint, and that support and effective coping strategies can make a big difference for people living with a brain tumor.
TAGGED WITH: brain tumor, central neurocytoma