Sometimes things show up just when you need to hear them…
I ran across this quote while scrolling mindlessly through sites on the Internet, trying valiantly to avoid my own thoughts. (That is easier than it used to be, thanks to cancer’s lovely mental side effects)
“Why can’t you just shake it off, and do something productive for once?”
“This isn’t you–you’re tough, you’re strong, you can get through anything!”
“Enough wallowing, already!”
“Good grief, how long are you going to sit around feeling sorry for yourself?”
Ever since I was forced to retire in mid-October, I have been in a funk. I started my first real job when I was sixteen years old, and have been working ever since. Before that, too, I worked. I babysat, and did any other kind of jobs I could find, like helping harvest potatoes on the family ranch. Suddenly, six months ago, I found myself without a job. No warning. And without even a glimmer of a clue about what I wanted to do next.
I hadn’t had time to plan. In the last few years, I found myself wishing I could afford to retire. I had become seriously disillusioned with watching public education move farther and farther away from research-based best practices at lightning speed. I planned to work at least three more years, until my youngest had graduated from high school. But now, suddenly, without a plan for what to do next OR how to swing it financially, I was retired.
After 25+ years as a teacher–with good evaluations and reputation–suddenly, I was no longer able to do my job. My ability to think on my feet, once so effortless, was gone. All my free time was filled with homework. Even then, I couldn’t keep up with the demands of planning, presenting, and assessing. I was always behind. Nor was I able to communicate successfully with colleagues and parents anymore.
Knowing I can no longer competently do the job I loved for a quarter century is a bitter pill to swallow. I no longer loved teaching (or, more accurately, what teaching in public schools has become). But I wanted to leave on my own terms. I wanted to decide when, and under what circumstances I left my career. And I definitely didn’t want to leave on an all-time career low. It felt like my choices were to retire, or stick around until I was fired.
The cognitive decline I’m experiencing is probably caused by one of cancer’s lovely mental side effects, affectionately known as “chemo brain.” Though it is difficult to pin down the cause of the cognitive losses often referred to as chemo brain, many attribute those losses to chemotherapy. The oncologist said it would last a year or less. But the more research I did, and the more survivor stories I read, the clearer it became that for a surprising number of people, chemo brain often lasts far longer.
Great thing to discover AFTER chemo!
I would not even have known chemo brain was a “thing,” if it hadn’t been for a blog about cancer I follow, Nancy’s Point. For many, chemo brain lasts for anywhere from two to ten years. Some people never regain their pre-cancer cognitive functioning. Had I known this before treatment, would I even have said “yes” to chemo? Due to the size and characteristics of my tumor, I was right on the edge between “should have chemo” and “chemo not required.” Not that it matters now. The damage is done. (you can read about my cancer journey here)
Recently, I read a blog post by a woman who lost TWENTY points from her IQ, which she attributed to cancer’s biggest mental side effect. Twenty! To date, after a long time, a lot of work with a speech/language pathologist and by using the Brain HQ computer program, she has regained fifteen of those IQ points. Encouraging news, for sure. But I have already retired, which required agreeing not to return to the profession full time, even as a substitute. Plus, there are no other districts I could work for in this town, even if I COULD go back to teaching.
But what if it’s not chemo brain?
I have been working with mental health professionals–a psychiatric nurse practitioner and a therapist–for many years. Medication and various therapies, including EMDR, tapping, and traditional “talk” therapy, helped minimize the effects of depression and anxiety, and allowed me to function in daily life. But so far, nothing has made any noticeable difference in the level of cognitive decline I am experiencing.
When the nurse practitioner suggested that I talk to my primary care doctor about the possibility of early-onset dementia, I panicked.
Dementia runs in my family. Not Alzheimer’s, just plain old garden-variety dementia. The last three generations on my mother’s side of the family have lived to a ripe old age. Physically healthy as a horse, my mom lives in a memory care facility. While her body is still healthy at eighty-two, she is no longer able to pay her bills, remember to eat, or perform most day-to-day life activities. Her personality changed. Just as her mother’s and her grandmother’s did. As the person in charge of keeping her safe and cared for, I see her gradual decline up close and personal.
My primary care physician agreed: a neuropsychological evaluation would be the best way to figure out what is going on in my brain. Unfortunately, in Montana, neuropsychologists are few and far between. We checked with all the neuropsych offices across Montana before finding one who was even accepting new patients. Still, the soonest appointment I could get is seven months away. Seven months! That’s a long time to wait, particularly with the possibility of early onset dementia hanging over my head.
Given a choice, I’d far prefer chemo brain!
My primary care doctor also suggested getting an updated sleep study. I use a CPAP due to sleep apnea, but still struggle with insomnia. She thought making sure that the CPAP therapy is working would be a good idea, since prolonged sleep deprivation can also cause cognitive decline. I flunked the follow-up sleep study. I am in the process of figuring out what the next step will be to resolve that issue.
In addition, the CPAP only helps when I actually can get some sleep!
A few things I need to remember….
First, I worked, starting at age sixteen, with no real breaks. That’s forty years! Maybe I need to give myself a little longer than six months to figure out who I am post-retirement.
Second, I had no warning. Though I realized teaching was getting more difficult, and I spent far more hours outside of school planning and grading papers than I ever remember having to before, I thought I’d be able to make it for at least a few more years. I had started to think about retiring. But in an abstract, “someday, I’ll need to start thinking about what I want to do when that happens” sort of way. Not in an “it’s coming soon–you’d better start planning” sort of way.
Third, sudden retirement intersected with a number of other recent changes. I downsized to a new house a little over a year ago. My youngest child, quite close to leaving the nest, decided to live full time with her dad. Previously, she split her time between houses, switching every Sunday. Then there is the never-ending responsibility of being caregiver of not one, but two people.
These days, everything takes longer.
Last, but probably most important: the changes in my cognitive function severely limit my options. Though I feel like my intellect is still there, it takes me far longer to complete tasks, plan, and solve problems. If I don’t write everything down, then remember to look at those lists, disaster is soon knocking at my door. Stress makes all of it worse. The big change in routine has not helped with that–I can’t stack new habits on long-established routines, because those routines no longer exist.
The changes in my cognitive function mean that everything I do takes me a lot longer (writing, problem-solving, planning). Wouldn’t it be realistic to believe that maybe it will take me a little longer to settle into a drastically changed life, as well? To figure out what changes I need to make to deal more successfully with the mental side effects cancer has left me with? I know if I were talking to a friend, that is what I would tell her. Why is it so hard to follow my own advice?
For now, I think my focus needs to be on taking my own advice. Give myself some time. Establish new routines. Enjoy my hobbies and free time as I thoughtfully consider what I want for the next chapter of my life. Easier said than done, but important, nonetheless.
We put far too much pressure on ourselves to immediately jump up and get back on the horse when we fall (or get knocked off). We need to stop doing that!
How about you? Are you good at giving yourself time to regroup? Or, like me, do you beat yourself up about not being able to immediately rebound after a life-changing event?
What events have thrown YOUR life unexpectedly off-course? Were you able to take time for yourself to regroup and recover? If you have been in this position before, what strategies and actions helped you through your tough times? Or are you still trying to find your way?
Tell me about it!