I wanted to figure out a way to put chemo brain into context for people going through cancer treatment. Some folks think it’s an imaginary thing, more psychological that physiological. The truth is that a number of chemo drugs (but not all) can affect the nervous system, and as such, they can affect the thought process. This YouTube video is my attempt to share some insight on how chemo brain can change a cancer patient’s life.
I’m a big believer that family caregivers can make a difference for cancer patients when we focus on overcoming the dreaded “chemo brain” by helping our loved ones in gentle, respectful ways.
This article, by Ellen A. Walker in the April 1, 2013 issue of The Scientist, is the basis of my blog post. If you have a loved one who struggles to remember things, check it out:
I trained as a teacher, so I understand that not all students process information in the same way. I often saw students struggle to learn what came easily to other classmates and peers. It’s part of the reason why I always made an effort to gear my approach to the specific student. By understanding how a student perceived information, I was better able to figure out ways to connect that student to the information I wanted to impart.
Why does that matter? My mother had chemo brain after being treated for lung cancer. Oddly enough, she also had ADD. It runs in my family, and although I don’t have it, I made an effort to understand what it is and how to help someone overcome it. Patterning the brain to overcome deficits can help build connectors and connections, can bypass what isn’t working. The human brain is an amazing thing, especially when you look for ways to overcome the obstacles. In the years of being a family caregiver, I had devised strategies to help my mother cope with all the simple things that she couldn’t remember due to the ADD. But with chemo brain? Wow. She was devastated. Why?
She had an amazing mind when it came to language skills. Verbal and expressive, she might not have been able to focus on concrete issues, but she had been a writer for decades, a voracious reader, and a talented Scrabble player, who didn’t like shortcuts or cheating. With chemotherapy, all that seemed to fly out the window.
Even as those cognitive issues began to rear their ugly heads, I was looking for ways to reduce the emotional blows she endured because of the chemotherapy. We moved from competitive Scrabble to cooperative Scrabble. I refused to compete with her, insisting that it was more important for her to get the words than it was to get the points. I would give her little prompts, trying hard to encourage her to push herself a little more to come up with possible solutions. I even nudged her to think of more than one solution. I wanted her to have options that would allow her to realize, to recognize, that there were points according to the value of the letter tiles.
In other words, I wanted her to have the chance to relearn how to play the game, and in doing so, I wanted to return to her some of the verbal skills she lost after chemotherapy. Did I succeed?
I’d like to tell you that my mother went back to being her old self eventually, but that’s not quite true. She never did seem to fully recover her ability to read for any length of time. The joy of reading slowly slipped away from her. Part of that could have been due to the progression of her cancer.
But I can tell you that those Scrabble sessions actually made a difference. What is my proof? Time and time again we played the game, on a regular basis, a regular schedule. Slowly, but surely, my mother began to recognize the value of the letters and to recall the potential words. It took hours of sitting and staring at the board. I believe that’s part of the recovery process. The human brain needs to see, to rebuild the connections in the brain, or even to bypass the old connectors for new ones.
Would that same type of brain patterning have helped her with her reading skills? I can only wonder. But I can tell you that she was pleased as punch the first time she found herself a 50-pointer on that Scrabble board, without any prompting from me. It was her success, her win, her climb up the mountain, back to what she was before chemo brain challenged her life.
If you’re a family caregiver for a cancer patient challenged by chemo brain, consider finding gentle, respectful ways to encourage your loved one to “relearn” what once came easy. Focus on the fact that chemo brain is a very real side effect from many types of chemotherapy drugs. Expect that there will be times you might have to prompt your loved one to remember. Don’t nag. Don’t take over your loved one’s mental life. Think of yourself as a train conductor. You want your loved one to get from point A to point B. Call out the stations as they pass by. Remind your loved one what he or she is seeing and where he or she is seeing it. Give a heads up at each juncture. When you do this, you are assisting your loved one to reconnect, to stay in the game of life, to regain what was lost.
Always remind yourself that a cancer survivor with chemo brain is not a child. Never speak down to your loved one. Never say things like, “Listen this time!” or “You have a mind like a sieve! Why can’t you remember this stuff?” Think of chemo brain this way. Your loved one’s brain is like a castle, filled with rooms. The chemotherapy has gone through that wonderful palace and not only shut off the lights, but locked the doors. Recovering from chemo brain requires that each door is not only unlocked, but the light switches have to be turned back on. That takes time and effort. Some parts of the brain may be less affected by the chemo therapy than others. Take a mental inventory and build on it. What is your loved one still good at? What can he or she still do without as much prompting? When you identify those skills, work with them. They will help your loved one recover more quickly, because everyone needs to experience success on a regular basis. It’s what encourages us to take challenges that we believe we can tackle effectively. We are drawn to light and repelled by darkness. When you identify things your loved one can still do well, find the associated activities that offer some struggles, and work on those skills. Those are the connectors in the brain that will eventually lead to the darkest regions. If you focus on the darkness, if you only see what the failures are, you will miss the opportunity to light the lights. Strength comes from success, from what is functioning. Weakness comes from darkness, what is failing. Point yourself in the direction of helping your loved one use his or her strengths to adapt to weaknesses.
Above all, believe in your loved one. Don’t assume that every change in mental acuity is permanent. Don’t be afraid to put up notes, to put things in writing, to place reminders. There will be times that your loved one may get frustrated or feel “stupid”. Make a point of reminding him or her that chemo brain is real and not the result of laziness or disinterest.
One thing I did learn from watching my mother struggle with the cancer and the cancer treatment? It’s a lot of extra work above and beyond living life. It can be exhausting to juggle the side effects and the emotions of cancer. Cancer caregivers need to understand the wide range of issues. When you educate yourself, you are better able to reach out to your loved one. You don’t want to make your loved one dependent on you because of chemo brain. You want to empower him or her. Offering effective prompts and encouraging your loved one to get back to living can actually help overcome many of the temporary effects of the powerful drugs. When you focus on helping your loved one regain those mental skills, that’s the best kind of caregiving.
A note — Ellen Walker’s article in The Scientist was brought to my attention by Robyn Stoller, who tweets as @cancerHAWK, and she got it from Bruce Shriver, who tweets as @Bruce_S. My thanks to both of them.
For more help as a family caregiver, visit The Practical Caregiver Guides
News stations are reporting that chemotherapy can actually make tumors grow, increasing their aggressiveness. My first thought upon hearing this was that people might unnecessarily turn away from cancer treatment on the assumption that chemotherapy does no good.
Back when I did my teaching practicum in the pediatrics department of a big city hospital, I used to sit with children who had any of a variety of ills. I met a wide range of children with cancer, from those with brain tumors to those with leukemia. Back then, the survival rate was dismal. Cancer was a death sentence. Cancer treatment was a tiny ray of hope to cut through that death sentence. In some cases, it was a little more time. In others, it was remission until the cancer kicked in again, if it did. We’ve come a long, long way since those days.
Even in my mother’s case, that chemotherapy made her life better for a while. When I recall the days before her lung cancer was diagnosed, I remember days when she could not leave her chair because breathing came with great difficulty. For months, she had complained to her pulmonologist that she was having trouble. He chalked it up to emphysema and COPD. “Put her in a wheelchair,” was his solution. It was only when an infection landed my mother in the hospital that the cancer was found. By then, it was inoperable. That’s why I defend chemotherapy as a tool. I understand the effect it had on my mother and I know she was glad for the extra time she had to prepare for the end of life.
I say that she had extra time because that cancer was inoperable. She was already dying when the cancer was discovered. She was unable to eat, weak, stuck in a wheelchair, miserable and frustrated. Without that chemotherapy, she would have died much, much sooner. And there is much she would have missed in life.
Cancer can move quickly in some cases, slowly in others. For my mother, the extra time she had to live her life allowed her to finish the unfinished things that weighed on her mind. And when she felt that the struggle was more than she wanted to continue, she chose to stop. She was lucky. She had a great oncologist who was very supportive.
So, for this elderly woman with inoperable cancer, what did chemotherapy do for the extra months of her life? My mother went from being stuck in a chair, because she couldn’t breathe, to getting out, traveling, having fun. She was able, for some months, to give up her oxygen tank, that heavy weight that constantly reminded her she couldn’t breathe. That was freedom. That was heaven for a woman who lived to eat at her favorite restaurants and to go for long drives to see the sights. It was Red Hat gatherings with the ladies and senior lunches at the community center. It was family celebrations and reunions. The chemotherapy helped shrink that cancer enough that she could breathe on her own and she made good use of the extra time.
It’s easy to think there is no point in going for chemotherapy when you hear news stories telling you that chemotherapy can make cancers grow. That’s not necessarily the whole story you need to know. Cancer is a tough disease, and in the last fifty years, there have been many, many new ways to treat the disease. Every day, researchers are working hard to find the new medications that will target it more successfully. Every day, oncologists and hematologists are tweaking chemotherapy treatments to be less damaging and more effective.
Cancer treatment is always complicated by individual needs, by how the body handles this drug or that. No two patients are the same, and the better doctors get at profiling the cancer and determining the best course of treatment based on the type of cellular and molecular issues involved, the smoother the treatment goes.
Before you consider stopping any cancer treatment, ask for information that is specific to you, to your cancer, to your loved one’s cancer. Don’t ask your neighbor, your garbage man, your cashier at the grocery store, your Aunt Gert who runs a gift shop, or even a stranger on the street. Ask your medical team, the people who are on the front lines in the war on cancer. Ask those who have seen what works and what doesn’t work over years, who have seen what happens to people who are treated and those who are not. Ask what your survival rate is without it. Ask what your survival rate is with it.
So many things have changed about chemotherapy treatments over the years. Some cancers are less aggressive than others, and over time, researchers have found that sometimes no treatment or a little treatment is better than a lot of treatment. That’s why we need good researchers. That’s why we need good studies that take a hard look at every aspect of cancer treatment. We should not fear finding the answers, even if they take us in a different direction. We need to know the truth about cancer and about its treatments.
When all is said and done, you want to survive cancer as well as is possible. You want quality of life, so you can spend your time doing what matters most to you and your loved ones. You want to manage your disease, so that it doesn’t manage you. Don’t let the news reports about chemotherapy terrify you or turn you away from chemotherapy that can make your life more comfortable and keep you active longer. Wonder, ask, demand, seek — be active in the fight against cancer because it matters, life matters, you matter.
For more help with your role as a cancer caregiver, please visit The Practical Caregiver Guides