After glioblastoma diagnosis, a garden of human kindness

October 24th, 2018

Last fall, Ken Smith, 65, a controller for a bus company, began to experience bad headaches and his balance seemed a little off.

Initially, doctors thought Smith had a stroke but at the urging of a neurologist, he had additional MRIs that showed Glioblastoma Multiforme (GBM), a malignant brain tumor that starts in the brain itself.

Ken Smith tends to tomato plants
Ken Smith tends to his garden. He was diagnosed with gllioblastoma about a year ago.

“It doesn’t migrate from cancer elsewhere, like a breast or lung tumor,’’ said Dr. John McVicker, a preeminent neurosurgeon and medical director of neurosciences at UCHealth Neurology and Neurosurgery Center at Memorial Hospital Central in Colorado Springs. “There is no one specific cause, but rather a series of gene mutations, deletions and multiplications, which can trigger a brain cell to lose control and multiply wildly.’’

Glioblastoma surgery

Everything about the glioblastoma diagnosis was surprising for Smith and his wife, Patsy. Smith was healthy otherwise and thriving in his job — enjoying every minute of it.

Surgery to extract 80 percent of the tumor lasted about four hours. The remaining 20 percent of the tumor was wrapped around a part of the brain that controls speech. Removing that part was simply too dangerous.

“If a person is otherwise healthy enough, the most important thing we can do to treat GBM is remove as much of the tumor as we can (over 90 percent has a big impact on outcome), and determine what the specific genetic mutations are that may make the tumor more susceptible to certain treatments,’’ McVicker said.

Before every surgery, including Smith’s, McVicker meticulously maps a patient’s brain function.

“We wouldn’t want to prolong a person’s life but paralyze them, or doom them to a life where speech or language had no intelligible meaning,’’ Dr. McVicker said. “Since these cells migrate throughout the brain, there will always be a few abnormal cells left behind after brain surgery, still resistant to other types of treatments. So far, no matter how good the surgery and the therapy, it will always come back.’’

Ken Smith with his wife, Patsy
Ken Smith and his wife, Patsy.

An abundant garden

With a median life expectancy that has improved to about 18 months, Smith and Patsy are relishing every moment together. In the spring, they planted their garden in the backyard of their central Colorado Springs home.

“My wife has been so wonderful,’’ he said.

In the dog days of June, when temperatures soared over 85 degrees, Smith wondered if his poor garden was going to make it.

They planted 17 vegetables and rows of flowers and for those days in June, he saw only spindly growth, his plants thirsting for moisture and a break from a scorching sun.

Smith had come through the winter and early spring, having endured brain surgery and 28 rounds of radiation.

A photo of Dr. John McVicker
Dr. John McVicker

He welcomed the sight of July’s monsoon rains, when the heavens opened nearly every afternoon, sprinkling Smith’s plants with the nectar of life. By mid-August, the bounty that sprung from the garden nourished his soul and body — potatoes, tomatoes, broccoli, zucchini, eggplant, cauliflower, onions and more. Through all that he had been through, his sense of humor remained intact.

“People lock their cars when they come over so I don’t put anything in it,’’ Smith said. “They thought I would give them zucchini.’’

Despite plenty of news of late about glioblastoma diagnosis, the tumor that took the life of U.S. Sen. John McCain, the incidence (rate) has remained remarkably stable over the last 20 years, Dr. McVicker said.

Along the way, Smith said he has been fortunate to have people like Dr. McVicker and his oncologist, Dr. Ann Mellott, who provides care at the UCHealth Cancer Care and Hematology Clinic at Memorial Hospital Central and the nurses and technicians who took care of him at his side. He considers them to be delightful surprises, a kind of human garden, sweet and tender, full of color and texture.

Feeling like a VIP

“They were just wonderful,’’ he said. “The people were just exceptional. It is such an intimidating and scary thing. They make you feel welcome, and they care about how you feel. I left feeling like a VIP, they were so good to me.’’

Smith has always been fond of Memorial; his son was born at the hospital 41 years ago, but he said the place is way different now.

“The biggest change you can see is in the people, not just the wallpaper. It’s just how the people seem to feel – upbeat and outgoing,’’ he said.

Dr. Ann Mellott
Dr. Ann Mellott

Dr. Mellott said she believes that the nurse navigators have helped patients feel more welcome and comfortable.

On one occasion, when the effects of the chemo left him weak, Smith returned to the hospital for a brief stay. He said that before people left his room, no matter if they were a doctor, a nurse or a housekeeper, they always said: “Now before I go, is there anything that you need?’’

“It’s a culture,’’ he said. “A lot of places have good people and it still doesn’t work. It’s from the heart – that place is totally from the heart.’’

Smith says that not being able to go to work every day has been difficult. And reviewing glioblastoma diagnosis information on the internet –it’s something to use on a very limited basis and not to assume that everything applies to everyone.

The tumor hasn’t grown of late, Smith said. “It’s something that I can have for quite a while or not very long at all.’’

Dr. Mellott said that when explaining glioblastoma cancer to patients, she explains it this way: “I ask people to think of their brain as a plate of pasta, and you want to add some pasta sauce, so you spread it over the pasta.

“Then, you decide you do not want some pasta sauce and the surgeon goes to take out the sauce, but there are still little tracks that get in. They’re there.’’

Like others who have been diagnosed with cancer, the disease has its way of separating the important from the unimportant. What was important, he says, was to take the time to write a thank-you note to the bounty of caregivers who have looked after him. To them, he wrote:

“Of course I believe that God has a plan for everything, but in the assembling of your team, He was really thinking big. Not only is each of you so professional and skilled at your jobs, it is the ‘human’ element that you bring to the patients and their families that makes so much difference. Each of you brings such kindness at the same time you exercise your competence.

“You have made the patients feel safe, well taken care of, but most of all, cared about. I’ve gone through a stage of trying to learn as much as I can about GBM. I’m at the point that I’ve learned more than I want to know. I’ve been blessed with a great medical team. I’ve done everything they have said and will continue to do so.

“I am just going to try to enjoy every day for itself. God bless each of you – not just for what you have done for my wife and me, but all the patients who have yet to meet you.’’

About the author

Erin Emery is a writer for UCHealth and is based in Colorado Springs.