|Karen Saywitz, PhD|
By Karen Saywitz, PhD
Before I was diagnosed with cancer, I led a fast-paced life. I was a tenured professor at a major university who conducted research, taught seminars and I ran a clinical program with a staff of 20 M.D.s, Ph.D.s, and social workers--a program that delivered mental health services to families of children prenatally exposed to drugs and alcohol. I traveled some, consulting for the Department of Health and Human Services, The Centers for Disease Control, and the American Psychological Association. In fact, two days before I was diagnosed, I had been in Washington, DC, giving a congressional briefing in the Senate Building on children’s mental health care. Most nights I was making a healthy dinner for my husband and my two children, driving carpools, attending my daughter’s concerts, and cooking multi-course holiday meals for a crowd.
After my diagnosis, I had multiple surgeries with the obligatory complications, picked up a host of infections because my immune system was suppressed, and had six months of chemotherapy until I couldn’t take it anymore. By the end, I was walking into walls and cabinets, pretty out of it. My uncharacteristic ditzy conversation was a source of great amusement for my daughters and sisters. I wasn’t driving, grocery shopping, cooking for my family, socializing or working…..I had basically been in bed for 9 months. But after the most intense period of treatment was complete and I had survived the life-and-death battle, there remained a variety of symptoms and side effects that had not remitted. Among them, these nagging cognitive difficulties: symptoms I came to learn were not uncommon after cancer treatment.
One day I went to fax something, I put in the wrong number. I walked back to the desk, looked at the number a second time, walked to the fax machine, same thing, a third time, same thing. As a psychologist I knew that usually you have about 12 seconds of short-term memory without rehearsing something before it fades. Obviously there was something wrong with my short-term memory; it didn’t take that long to walk across the room. My husband, who was talking to me about something entirely different, offered to do it for me. The next day, I went to compute some simple mental math and again, it was a problem, but once I picked up a paper and pencil I could do it easily. There was something wrong with my working memory, my mental scratch pad.
I tried to start cooking meals again and found I had trouble staggering the cooking times of the dishes to get them all out of the oven at the same time. “Here, just eat the side dish first, I know you are hungry and its dinner time, but I just realized that the main dish still has another 40 minutes to go.” Something was wrong with my ability to multi-task. I had trouble talking on the phone while cooking, “Hello Mom…. Are you there?” I had trouble sustaining my attention across interruptions and distractions, switching attention back and forth between two frames of reference. People began alluding to things they had already told me in prior conversations that I did not remember, and I wondered if I did not encode the information because of distractions or interruptions to my attention.
In addition to short term memory and multi-tasking, I noticed that there were a lot of mental tasks that took forever for me do, like finding the right words that I thought were on the tip of my tongue. I seemed to have such a slow speed of processing information, I could still do a lot of the same tasks, but it took a lot longer, I was worried about missing deadlines, giving lectures from memory. …Needless to say I was worried that my brain was broken and my re-entry into the workforce would be a disaster. All I could see was that the bright future I envisioned for myself was crumbling. I couldn’t imagine reciting research findings chapter and verse the way I used to.
When I talked to my oncologist, Philemena McAndrew, she referred me to the Cedars Rehabilitation and Cancer Survivorship program where I met Dr. Asher and Dr Jo. Over the course of the next three months in their comprehensive rehabilitation program, I got out of bed and started exercising, slowly in fits and starts, going to physical therapy to regain range of movement so I could drive, and cooking my favorite recipes but first making a chart that worked backwards from dinner time. I started practicing qi gong two to three mornings a week, and wore a pedometer, trying to walk 10,000 steps a day. I attended a six-week class called, “Emerging from the Haze,” that involved a neuropsychological evaluation with feedback on how to work around my attention, processing, and memory problems. I figured out a wide range of strategies to compensate, accommodate and side step my problems.
I would like to say that mine is a simple story of loss and recovery. And to some extent it is, there were certainly losses in terms of my abilities and I have made steady improvement. But I have yet to fully return to the same cognitive functioning I had before this all began. So I am going to say that it is a story of loss and resilience ….of patience, pacing, prioritizing, balancing, and hard work. Of course, I could not say what will work for someone else. Each cancer is different; each person’s reaction to treatment is different. But I fought for my brain. It took a lot of effort, but it was worth it. It has been like learning to read music and play the piano for the first time late in life. At first you have to look at your fingers, look up at the music, down and up, it’s a halting choppy, laborious procedure, your joints hurt and your hand eye coordination isn’t what it was, but if you persist, eventually you get things onto automatic pilot and you can play a piece without putting so much conscious effort into it.
What I’ve learned is that the path to recovery takes a concerted, integrated effort of both physical and mental exercise, but it is also an extraordinary learning opportunity to develop new strengths and abilities. What did I do? In the chemo brain class I learned to be more self-aware, monitoring my cognitive errors over the course of a day or a week, what triggered them, under what circumstances they appeared, and what were the consequences. I learned to pace myself, use memory mnemonics like imagining a neon sign above a student’s head with their name on it or above my car with the level and section on it, because at a large university you can’t just park in the same spot each day. I learned to be more flexible, give myself breaks, to use checklists, giving myself more time on deadlines.
Not everything I tried worked. I felt like a GPS navigation system that kept recalculating the route to my destination. I had a neuropsychological evaluation with Dr. Jo and she identified a certain type of memory problem: proactive memory interference. That meant new information would interfere with my ability to recall prior information, ie: trouble getting back on track once interrupted with new input. Dr. Jo and I talked about my returning to work and preparing detailed power points as an external cue to prompt my memory and stay on track, and having students wait until the end of the lecture to ask questions.
But once I started back to work, I would inevitably run over and there wasn’t time for questions… and the class was boring! During all those months at home in bed with my iPad, I had become an aficionado of the internet, Ted Talks and YouTube. So I started using internet video clips to demonstrate concepts better than I ever explained them before by citing all those research findings chapter and verse by heart. I got over my pride and started telling students, "I don’t know the answer to that question off the top of my head, I’ll look that up and get back to you,“ and then wrote down their questions.
Now, I am happy to say this is my second semester of teaching again at the university. I would say that the last lecture I gave on Thursday is one of the best I have ever given. Not one student had the nerve to check his BlackBerry during class. That could be a first. I give the students more of the wisdom I’ve gained through this process, lessons for life. And most of the time, I can find my car in the university parking lot on the first try.
Michael asked that each speaker provide three take-home points. So what did I learn?
1. Be resilient. If you find you have some nagging cognitive problems after the intense treatment phase is complete, it’s a setback, but be flexible and persevere.
2. Be proactive. It is not realistic for oncologists or surgeons to be responsible for this transitional stage of your care. They simply do not have the time or expertise. Accept that there will be a transitional stage of rehabilitation during which there is a lot we patients can do to influence our internal biology, educate ourselves, and seek professional help from the field of rehabilitation medicine and neuropsychology. This can make a huge difference in the level of functioning we attain. These are core health care issues, not optional or ancillary ones.
3. Develop an observing ego and keep moving forward. Find a viewpoint from which you can observe yourself and how you interact with the world you live in. From this you will see choices, options, for being in control again. Use your brain. Learn something fun that revitalizes you rather than drains you. I no longer believe I will be returning to my previous life. I think that the landscape has changed forever; I am going forward, in new directions, still on a magnificent journey. - Karen Saywitz
Cedars-Sinai Cancer Survivorship and Rehabilitation: (310) 423-2111
Cedars-Sinai Neuropsychology Services: (310) 423-9722
Cancer Support Community: (888) 793-9355
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