“Cool, like a spaceship”–the positive spin I put on the MRI machine. At eleven, my son Matthew was mature enough to understand that doctors needed pictures of his brain, naive enough to play along, trusting his parents to keep him safe.
Less than an hour after I tucked Matthew onto the gurney, my husband, Mike, and I squeezed into a radiology lab, unprepared for the sucker punch.
“We found a growth.”
It would be hours before I absorbed the true meaning of the euphemism.
My son had a brain tumor.
That jacket and sunglasses morning in October 1997, Matthew became one of an estimated 700,000 Americans living with brain and central nervous system (CNS) tumors. There are 140 types of brain tumors, and each patient’s symptoms, treatment, and outcome vary widely.
Brain tumors are categorized as either primary–those that originate in the brain, like most pediatric brain tumors, or secondary—those that metastasized to the brain from another part of the body.
About half of all primary tumors are gliomas, and the most common gliomas are astrocytomas.
Finally, pilocytic astrocytomas, one of the most prevalent brain tumor types in children up to age fourteen–the type of tumor Matthew had–are low-grade and slow-growing. If my child had to have a brain tumor, I concluded, he had the right one.
The radiologist had more to say.
Pointing to a computer monitor, he explained that the errant clump of cells was attached to Matthew’s brainstem, a structure deep inside the brain which controls and regulates vital body functions including respiration, heart rate, and blood pressure.
“It’s too dangerous to remove,” the radiologist said, “inoperable…”
And before I had a chance to scream or collapse, he added, “but benign.”
Benign is not always harmless
The word “benign” kept me upright and coherent that day. But sometime in the blur of the following week, a doctor told us it didn’t matter if a brain tumor was benign or malignant.
Benign tumors in most other parts of the body are often not harmful, but in the brain, boxed in by the rigid skull, any abnormal growth can be dangerous, even life-threatening. And, because a child’s brain is still growing and forming connections, the danger is magnified.
I was thoroughly confused. I understood that Matthew didn’t have cancer, yet it seemed “benign” in the oncological sense didn’t mean “benign” in the literal sense.
Here’s what I’ve come to understand about the difference between benign and malignant tumors:
1) uncontrolled growth,
2) invasion and damage of healthy cells
3) metastasizing (spreading) to other organs of the body
A tumor that lacks these characteristics, therefore, is considered benign.
However, while a benign tumor in the brain may not invade and damage healthy cells, (number 2 above), it may crowd and damage structures of the brain that control every aspect of living, from breathing to thinking and blinking, walking and talking, swallowing and wallowing in emotion.
A benign brain tumor may be deadly, and I’ve read the stories of those who did not survive.
A benign brain tumor may be deadlier than a malignant one.
For this reason, the American Brain Tumor Association prefers the term non-malignant to benign.
Understanding tumors and cancer in other parts of the body is beyond my expertise and the scope of this blog, but here are some great sites to help you understand:
Matthew’s benign brain tumor—the pilocytic astrocytoma clinging to his brainstem—was slow-growing and small, the size and shape of a big kidney bean. The danger was that its location trapped cerebral spinal fluid in the ventricles—cavities in the brain—and expanded them like water balloons.
This condition is called hydrocephalus. I had heard of babies being born with it, but I didn’t know it could happen in older children, even adults.
Matthew’s hydrocephalus was so severe, it squished his gray matter into a sliver against his skull. Every part of Matthew’s brain was affected, which explained his cognitive, motor, and emotional decline over the previous three years. A bright, active, and happy child, he had become a spacey, lethargic, and often depressed preteen.Anything the brain can do, a benign brain tumor can take away. Click To Tweet
A novel surgery—an endoscopic third ventriculostomy (ETV)—was Matthew’s ticket back to his old self, or so we believed.
I understood only the basics: the neurosurgeon would poke a hole in the third ventricle and the excess fluid would drip away, to be reabsorbed by the body. Matthew would spend two nights in the hospital and have follow-up scans of decreasing frequency. Unless the tumor grew significantly, which was not expected, chemotherapy and radiation would be unnecessary.
I’ve connected with many patients and survivors over the years for whom the vestiges of their brain tumor are visible— surgical scars, physical, cognitive, and behavioral impairments. Others don’t survive. Then there are individuals like Matthew whose consequences are invisible.
Yet, just as benign doesn’t mean harmless, invisible doesn’t mean nonexistent.
Invisible doesn’t mean nonexistent.
Today, Matthew is an independent adult who has accomplished more in his life than I ever anticipated: graduating college, working full-time to support himself, buying a house on his own. Since his tumor was inoperable, it’s still there, and Matthew describes its effects as an invisible illness.
Mostly his symptoms are forgetfulness and confusion, especially when he is tired, stressed, or on information overload.
Beyond that, it is Matthew’s story to tell, and he has taken a stab at it.
As for my story, what I’ve shared here is the easy part. The hard part would take a book to tell and that’s what I’ve done.Growth: A Mother, Her Son, and the Brain Tumor They Survived. A memoir. Click To Tweet
My memoir is not yet ready for publication, but I hope you’ll subscribe to my blog and newsletter so you’ll be the first to know when that happens.
In the meantime, remember to be gentle with others. You never know what “benign” matters are making their life hell, what invisible afflictions make it hard to get through their day.