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After Cancer At 18, I Learned 'Chemo Brain' Can Last Long Past Chemo

Young cancer survivors, from left to right: Cynthia Fernandez, Kelly and Christina (Jesse Costa/WBUR)MoreCloseclosemore
Young cancer survivors, from left to right: Cynthia Fernandez, Kelly and Christina (Jesse Costa/WBUR)

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My 19th birthday was the worst day of my life.

Riding with my mom through Miami rush-hour traffic, I quietly tried to move my right leg. I leaned forward and willed it to shift with my eyes, but it was stubborn. I told myself it was all in my head.

I had spent the morning in clinic getting a steady stream of drugs into my blood to treat my lymphoma. For five months, I’d been feeling the visceral waves of nausea that come with chemotherapy, and at this point, they were bad but also reassuring – the chemicals were in me, devastating my manic T-cells with broad strokes that also weakened the rest of my body.

I was diagnosed shortly after I graduated from high school. I had just begun summer classes at Florida State University when a few subtle but persistent symptoms emerged: loss of appetite and a cough that would not go away. I also had some pain in my lungs when I turned in bed. I later found out this was because the tumor behind my sternum was blocking the fluids in my lungs from draining, and the bag of tissue that lines the organ had swelled up.

The student clinic staff at the university was only mildly concerned when they read that my blood oxygen was low, but when the ER technician who took my chest x-ray glanced at the images and saw a heart-sized tumor behind my breastbone, she asked if I knew why I was here. My countenance told her that I didn’t know about the tumor. "The doctor will read the image," was all she told me.

“Cancer” wasn’t used in those first few days. They opted to use “mass,” to give me hope that this wasn’t going to consume my life.

It Stole My Movements

Five months later, on my 19th birthday, I was discharged from the oncology clinic during afternoon rush hour. We had to make our way through 40 minutes of traffic to get to the post office. My mother had a strange way of celebrating my birthday. She wanted to mail my medical leave of absence to the university where I had been a student for five weeks.

“Come on, it’ll be quick,” my mom said when we finally reached the post office. She got out of the car and made her way to my door. When she opened it, I lifted my leg as hard as I could with whatever muscles were working.

It’s OK, it’s OK, it’s OK.

I managed to lift my leg over the running board and tried to make my foot meet concrete with grace. But I collapsed onto my mom.

She poured me back into my seat. The paralysis made my limbs feel more like a liquid than a solid. Even if I completely applied myself, any movement of my leg lagged behind my intentions. It was a dead load. I felt the heaviness of my limb but none of its animation. And my right arm was quickly joining my leg.

Rush hour was no match for my panicked mother. We made it back to the hospital in less than 20 minutes.

There, a resident doctor asked me to touch my nose and then to touch her pointed index finger just inches from my face. We were all horrified when my finger slammed into my cheek, shot through the air and drew circles around her finger. It took all of my concentration to land it on the tip of hers.

She and a nurse rushed me into a CT scanner and placed my head in a fixed helmet with slanted mirrors so I could see the agitation of the neurologist on call.

Leukoencephalopathy was written on my chart. The doctors attributed it to methotrexate, a foundational chemotherapy treatment for blood cancers that I'd been given. It was supposed to stay in the fluid that bathed my spine, killing any potentially dormant cancer cells that could wake up after remission and sprout tumors in my brain. But the methotrexate’s molecules were small enough to slip through the weakened blood vessel barrier that protected my brain. It wreaked havoc on my brain's white matter and stole my movements.

I had lost my hair, my friends, and had forgotten what it felt like to wake in the morning without pain. I did not know if there was much left to lose, and yet here was this new insult.

Not Back To Normal 

Luckily, the paralysis lasted just two days. One of my nurses teared up when she saw me walk out of my room with a healthy gait — as if the paralysis had never occurred. But there are more subtle scars of that birthday on my brain.

By all medical accounts, I am now a healthy 23-year-old college student in full remission. I am finally a survivor. Doesn’t that mean everything goes back to normal, like the cancer never even happened?

Four years later, I tried to repeat the name of my neurological event to Dr. Mary-Ellen Meadows, a neuropsychologist at Brigham and Women’s Hospital who studies the cognitive after-effects of chemotherapy.

“Leuko…encelele-whatever,” I said. Meadows nodded and scribbled it down during her assessment.

By all medical accounts, I am now a healthy 23-year-old college student in full remission. I am finally a survivor. Doesn’t that mean everything goes back to normal, like the cancer never even happened? Why was I here, at an appointment that took months to book and even longer to realize I needed?

The answer is that I wasn’t back to normal and the cancer had definitely made a difference.

Back in college — now at Boston University — the last year and a half have been a struggle. As a student who excelled in high school, I know the difference between earning an A and a B. In my first semester at BU, I aimed for the A. After all, this was the cancer girl’s comeback. I went to lectures, read the textbooks cover-to-cover, went to office hours, completed the study guides.

My friends, on the other hand, only sat in on lectures and skimmed the book when it came time to complete the study guides. Yet I noticed that they got A's and B's as I flipped through my test booklet and came upon my own grade: a D.

I had done everything I could think of to prepare, and yet I severely under-performed. I thought that maybe I just had to relearn how to learn. It had been a while since I was in an academic setting, let alone a competitive school. There had to be a learning curve.

The next semester, I still wasn’t getting the grades I wanted. I grew frustrated and disillusioned but I denied my academic struggles as I had denied my unmoving leg in traffic years earlier. Maybe I wasn’t trying as hard as I could, or maybe I was never that great a student. Maybe this is all in my head.

Re-Learning How To Learn

I was still getting checkups at the Dana-Farber Cancer Institute when someone recommended I go to their annual Young Adult Cancer Conference. It would be an opportunity to meet patients and other survivors my age.

Over three dozen cancer patients, survivors and advocates filled a circle of chairs. We were here to talk about misunderstandings and frustrations that came with cancer. Christina talked about the hardships she was encountering as a student after completing chemotherapy. (I’m identifying her only by her first name to protect her privacy.) She mentioned that she was working with a specialist to help alleviate her symptoms.

Before she was a cancer patient, Christina had been a traveling nurse. She was constantly on the move helping patients, until she became one. She had surgery to remove the cancerous tissue in her colon and achieved remission, but later relapsed. Relapse is difficult to talk about. Those experiencing it are devastated, and those in remission are terrified of it. But she completed treatment and achieved remission again.

Christina is now in a graduate program. Poring over dense medical material is not unfamiliar to her, but as she began classes again after chemotherapy, she found herself struggling to learn the material.

She would read and reread the same paragraph but could not grasp the information. It was now taking her at least twice the time to learn new concepts.

She had heeded her doctor’s advice to wait until she had recuperated from the treatment.

“The six-month mark came and classes started and I did not feel like [the fogginess] had dissipated at all,” Christina said. “I should have waited longer, but I already had to defer a year and a half because the cancer came back.”

She underwent neuropsychological testing to help identify her new weaknesses and what strategies could help her cope with her new challenges.

Christina learned how her new brain learned. She recited her notes into a voice recorder and listened to her class lectures while lying in bed. She prepared her discussion questions beforehand because she knew she would struggle to find the right words. But this amount of planning almost overwhelmed her tenacity.

“Even though it was a part-time program, it quickly became a full-time job. It really is all I have the stamina to do at the moment, almost two years after treatment,” Christina said.

Doctors used to dismiss patients who complained of brain fog after cancer treatment. It’s still unclear exactly how many patients among the 15-million-plus cancer survivors are affected.

In some cases, difficulty with concentration, multitasking and retaining information comes from the cancer itself, for reasons that aren’t fully understood. Other times, it’s the therapy, causing brain cell death or breaking connections among those cells. Or it’s the stress of treatment that, like PTSD, leaves people struggling.

Many people bounce back fully within six months or a year of their treatment; some others, like Christina, don’t.

Doctors used to dismiss patients who complained of brain fog after cancer treatment. It’s still unclear exactly how many patients among the 15-million-plus cancer survivors are affected.

Meadows said most of her patients have received some type of treatment affecting the central nervous system: cranial radiation, or chemotherapy that damages brain cells.

“I typically see some of the blood cancers like leukemia, breast cancer survivors, brain tumor patients … lung cancer patients who received a whole brain radiation,” she said.

Perhaps the chemistry of cancer — the underlying cellular mechanisms, and inflammatory processes triggered by the tumors — are the factors that affect a person’s brain function, Meadows said. One study found that 30 percent of breast cancer patients who had been diagnosed but had not yet begun treatment scored lower on neurocognitive assessments.

Although the causes may differ, the effects are largely the same, Meadows said.

“Usually what we'll find are difficulties with attention and executive functioning; they just kind of feel less cognitively efficient,” she said. “Whereas before it would have taken them 15 minutes to do a task, now it's just taking them a little longer.”

Chemotherapy Leaves Its Mark

Kelly, who was a couple of seats from Christina at the Young Adult Conference and is now her roommate, has been dealing with these issues since she finished treatment 10 months ago.

She has always struggled with learning. As a middle-schooler, she was diagnosed with a learning disability and required extra time on exams. Chemotherapy exacerbated her challenges. A theater major, she waited six months after chemo to try out for a new show. But still, things were different. She earned a spot in a musical, but had lost her knack for memorizing her steps.

“Normally, I could learn that material quicker, but I had to put my heart and soul into it," Kelly said. "There were even points on stage where I had to concentrate hard to make sure I was hitting everything."

"There is a certain percentage of individuals who do have some subtle cognitive issues post-treatment, but even though they're subtle, they can be life-changing and concerning for patients."

Dr. Mary-Ellen Meadows, a neuropsychologist at Brigham and Women’s Hospital

Why post-chemotherapy brain function issues are so highly varied is the “million-dollar question,” Meadows said. She and other researchers are working to understand these cognitive deficits better.

Some people only show subtle discrepancies in the assessment, but these small gaps can be felt as vast voids, particularly for people like me who were used to being quick-thinking and always at the top of their game, Meadows said.

“There is a certain percentage of individuals who do have some subtle cognitive issues post-treatment, but even though they're subtle, they can be life-changing and concerning for patients,” she said. Sometimes, people who were high-functioning before treatment notice they’re producing less and grow frustrated with their performance.

Some cancer survivors with new priorities choose quality of life over the demands of their jobs and switch from full-time hours to part time, or get a position that is less exacting. Some have no choice but to stop work and enroll in disability.

Doctors now think about these cognitive problems when they prescribe cancer therapy, and are dialing back on – or eliminating – some of the most damaging treatments, like whole-brain radiation, Meadows said.

But many chemotherapies can affect the brain, said Dr. Lynda Vrooman, the associate director of Dana-Farber’s Perini Clinic for survivors of childhood cancer.

“We generally recommend survivors who have received treatment with these risks consider formal neuropsychologic testing,” Vrooman said. “This can be helpful in developing a plan to support the survivor medically, academically, and socially.”

When I went in for my own testing months ago, the four hours of puzzles and sketching figures from memory left me with a day-long headache. But the results of this assessment can help Meadows identify weaknesses and develop strategies for coping with new cognitive obstacles.

Her first step after testing is to make sure that patients are sleeping well, exercising regularly and are getting treatment for any anxiety or depression issues — all of which can help optimize brain function.

Sleep deprivation can affect thinking and memory, Meadows said. “And mood, like underlying anxiety or depression, [can make it] hard to pay attention to what is going on and focusing on what you need to remember. The idea is to optimize all these other factors,” to optimize the patient’s performance.

Constantly Defy The New Normal

My 24th birthday is in a month. It’s taken over five years, but I finally feel like the old Cynthia is turning the corner — the quick-witted, devastatingly funny Cynthia is showing up again. I’m now catching my mistakes when I edit; I’m winning at board games; and I find myself able to follow lectures from beginning to end. I feel fully present in conversations with friends. I’ve deeply missed the old Cynthia.

My postponed dream seems within reach: In a year and a half, I’ll be a college graduate. I know I have been incredibly lucky to notice my deficiencies, get assessed and get help. Cancer feels like a lifetime ago. As one of my doctors put it, “I knew your life would change, but I did not expect this transformation.”

I’ve learned to over-prepare: Over winter break, I began reading the textbook for a class that weighs on my cognitive weaknesses. I’ve learned to ask for help; if I am struggling with material, I’ll get tutoring before the semester slips away from me and I’m too behind to catch up. When I’m given a deadline or appointment, I write it down in my planner that same second. I do activities to increase levels of dopamine, “the memory molecule,” in my brain, like walking and yoga.

If there is any solace in knowing that it’s harder for me to learn, it is in knowing that there are also habits and behaviors, as well as medications, that can help me lead the extraordinary life I am determined to live.

Kelly’s issues, like Christina’s and mine, seep into our personal lives. We all shared a brief moment of cheerful solidarity when we found out we each repeat the same stories to the same people. Some cancer survivors forget names, introductions, schedules and directions.

“I have to have that conversation a solid three times before it even starts to slightly absorb,” Kelly said. “It’s embarrassing because it makes me feel like they think I don’t care, or I’m not present when they’re talking, but that couldn’t be farther from the truth.”

But the three of us are realizing that though we may have to work harder than we used to, triumph only gets sweeter with tenacity.

“I’m not your average Joe. I’m also the person who wasn’t supposed to survive three times," Kelly said. "I like to say that I’m a bad-ass and I constantly defy the normal."

She was speaking for all of us.

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