I was attending a recent meeting as a member of the renowned Cancer Center’s Patient and Family Advisory Council. We routinely take time to share and process our volunteer interactions with cancer patients and caregivers.
A gentleman volunteer who was on the Council shared a troubling experience. He was connecting with patients and caregivers in the neuro-oncology reception area. He spoke with a woman who was waiting for her claustrophobic husband to complete a head-molding procedure. The husband returned and approached the volunteer. “I’m getting a procedure and you’re out here hitting on my wife!” (In the meantime, the volunteer’s own wife was in an adjacent room.) The volunteer introduced himself and explained how he was connecting with all caregivers and patients to provide support and resources. The patient took him aside and started telling him dirty jokes.
The volunteer was shaken. However, the Council is blessed with members who had brain cancer. One was currently undergoing treatment. “Don’t be surprised if you see him again and he’s a totally different person.”
On Moffitt’s website, the experts explain:
“Brain tumor symptoms can include personality changes and mood swings when the tumors press on a person’s brain or cause the brain to swell. Mood changes are commonly associated with brain tumors located in the frontal lobe since that part of the brain is highly involved in regulating personality and behavior. The temporal lobe also controls a person’s behavior and emotions. Additionally, tumors affecting the pituitary gland can affect someone’s mood, since they can cause the gland to under- or overproduce hormones, leading to an imbalance.
“In addition to a brain tumor’s physical impact on a person’s mood, a brain tumor diagnosis can greatly affect someone’s mental and emotional state. Plus, personality changes and mood swings can result from chemotherapy and other types of cancer treatments.”
Anxiety and depression from learning of a diagnosis, or the administration of harsh chemicals, are common. Some of us top this off with delirium. I believe it’s important for caregivers to be safe, understanding and compassionate. Sometimes, that’s a tall order.
From what I learned, a few contributing factors to mental confusion in addition to chemo for any cancer patient may stem from pain killers, steroids, anti-nausea and sleep meds, low oxygen in the blood, infection, dehydration or too many fluids, too much or too little sugar in the blood, and organ failure.
I had acute myeloid leukemia twice and received a bone marrow transplant. Even without brain cancer, my cognition was often disturbed. Thankfully, I do not believe I was ever offensive or violent.
At different times, I experienced hypoactive and hyperactive delirium.I wrote, said and did things that I do not remember. As a tiny example, I’m sharing two texts that I have no recollection of writing much less sending:
“I’m still achy and sick but I’ll probably refrain the creators of the world.”
“Now for all the care to perfect and side effects fever for a year, etc. Hoping it goes smoothly! I hope you are really enjoying love!”
I mumbled absurd and irrational things. (So I am told.) I KNOW I had unwarranted temper tantrums. I often had a serious lack of balance. (One of my more understandable temper tantrums was when I was put in bed-lock after falling.) I heard monks calling for me.
Sometimes, the biological and neurological shifts in our bodies from cancer treatment make our emotions come out sideways.
A reassuring and safe environment, a good balance of electrolytes, healthy hydration, adherence to a prescribed diet and anti-depressives are a few things that helped me. Doctors can also prescribe anti-psychotic drugs. My suggestion is to let them know when mental confusion is witnessed.
My brother contacted the medical team when I experienced (what we are calling) chemo-brain while recovering at his house. I just remember a time of psychedelia and weird pains in my arms.I went in for a brain MRI. The results were written in alien medical jargon. I later deciphered that my brain needed more oxygen. I have no recollection of what was done, but I swiftly got better.
Some patients may have had an irritable disposition prior to the cancer. Maybe there is a chance that a softer side would emerge? (I haven’t read that, but I’m hoping.)
No matter what, every patient deserves to be wholly treated: mind body and spirit. And every caregiver should be blessed.
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