For Craig Alguire, MD, the switch from doctor to cancer patient began mid-pedal.
Alone in his basement on a bike trainer early one morning, he had a strange feeling that he could not speak. He tried. Only a mish-mash of words came out.
He soon found himself steeped in the patient’s side of medicine, as doctors diagnosed and treated a tumor that had taken hold in his brain.
Amid the whirlwind of tests and treatments, he juggled his roles as husband, father, cardiologist and patient.
To make sense of it all, he added one more role to his resume: Writer.
A cardiologist with Spectrum Health Medical Group, he narrates his treatments with humor, poignancy and a physician’s insight. He even posted a photo showing the hole in his brain left after a surgeon removed the tumor.
He found it fascinating.
“It blows me away,” he says.
The blog began as a way to update family and friends. Readership grew rapidly and in its first four months, it reached more than 20,000 readers, generating 90,000-plus page views.
Over coffee at an East Grand Rapids Starbucks, Dr. Alguire looks baffled as he talks about the response.
“I can’t even conceive of that many people peering into it,” he says with a laugh.
I heard I had a terminal diagnosis on 10/29/15, but the termination point is yet to be determined. Life is terminal.
Dr. Alguire faces a tough diagnosis: glioblastoma multiforme. He doesn’t like to read the latest research news because every article begins with the same gloomy overview. The typical patient survives 15 to 16 months.
But Dr. Alguire is anything but a typical patient. He’s young and fit and involved in a clinical trial testing an immunotherapy drug to keep the cancer at bay.
His blog focuses not on the odds, but on life and the hope that he will not only survive, but emerge from this patient experience as a better doctor.
In his first post, which appeared Dec. 15, 2015, he quotes his neuro oncologist, who told him, “We are all our own statistic.”
And then she said, “Let’s rock this.”
That’s what he intends to do.
‘This changes everything’
At 39, Dr. Alguire was the healthiest person who never saw a doctor―unless you count family gatherings. He regularly sees his father, Thomas Alguire, MD, an internist in Grand Haven, and his sister, Katie Alguire, MD, an oncologist in Muskegon.
“I knew my blood pressure was fine,” he said. “My cholesterol level was fine.” And he has undergone several echocardiograms just testing out new equipment for the office.
An avid runner and swimmer, Dr. Alguire competes in several races a year and a couple of triathlons. He and his wife, Staci, rise at 5 a.m. every day to work out before their kids wake.
The first inkling of trouble surfaced during one of those early-morning workouts―on Oct. 29. The kids slept upstairs. Staci was at the gym.
The problem with his speech came and went so fast, he almost wondered if he imagined it.
I had a hot streak going for 39 years and one week. Honestly, I simply loved to be alive. I loved my routine, work, colleagues, friends and family.
He told Staci and a couple of his partners at work later, but he felt fine. He decided to take a “wait and see” approach. He didn’t have to wait long. It happened again later that morning as he met with a patient.
“I tried to ask him a question,” he says. “And word salad came out.”
On the back of the patient’s EKG report, he wrote, “I can’t talk.”
He was back to normal by the time the ambulance arrived at his office to take him to Spectrum Health Butterworth Hospital.
“I felt silly. I hopped up on the gurney,” he says. “I could probably have jogged to the hospital.”
But he knew the aphasia he experienced―medical jargon for the problem with his speech―signaled something was wrong. He wondered if he had a stroke, although he had no risk factors for it.
After a CT scan, one of his partners came in to the room to talk to him and Staci.
“This is difficult news,” he says. “But you have a brain mass.”
Dr. Alguire thought to himself, “This changes everything.”
A golf-ball sized tumor
Sweethearts since 10th grade at Grand Haven High School, Craig and Staci Alguire have been married 15 years. They have four children: Allison, 11, Connor, 7, Ella, 6, and Mia, 2.
From the moment of his diagnosis, the couple worked to keep life normal for their kids, amid the sudden flurry of doctor appointments. Family members pitched in to babysit.
Friends in the field―med school classmates and colleagues he hadn’t seen in years―flooded him with messages of encouragement and advice. Dr. Alguire’s sister Katie became his oncologist. She sifted through the medical details and helped him craft his treatment plan.
On Nov. 5, a week after diagnosis, a neurosurgeon removed a tumor the size of a golf ball from Dr. Alguire’s brain.
Dr. Alguire remained awake for the first part of the surgery. He lay on the operating table, part of his skull removed, his head held in place with screws. He answered questions as the surgeon “mapped” his brain, so he could remove the tumor and avoid damage to the cells that control speech and movement.
Seeing an iPhone in the OR, Dr. Alguire asked the surgeon to send him photos from the operation.
For all the discomforts of receiving medical care, the warm blanket is a medical breakthrough. You put these bland, thin, cream colored blankets in an oven for about 10 minutes, and out pops pure comfort.
After he recovered, he started on an oral chemotherapy drug and a six-week course of radiation treatments at the Spectrum Health Cancer Center. He took anti-seizure medication, because his doctors believed the problems with his speech were caused by small seizures, triggered by the tumor.
With his sister’s help, he sorted through clinical trials available for glioblastoma and enrolled in one at Northwestern University. He takes the immunotherapy drug Pembro―the same one taken by former President Jimmy Carter for melanoma.
He goes to Chicago every three weeks for his “vitamin P” and periodic MRIs. So far, the scans have shown no tumor growth.
“We hope the Pembro is doing that because then it could help a lot of other people, too,” Staci says.
In the first months of treatment, Dr. Alguire dealt with fatigue and headaches. When he did too much, he felt a gurgling sensation in his skull, an unsettling reminder of surgery.
But his pre-cancer fitness level came in handy as he recovered. Soon, he began taking walks and then runs. Four months after brain surgery, he ran the Spectrum Health Irish Jig 5K and trained for the 25K River Bank Run in May.
At home, he plays basketball and four-square with the kids. He goes to all their school events, swim meets and games.
He returned to work part-time in late January.
Together, he and Staci choose to focus on living in the moment as much as possible.
“Every morning, you make a choice of how the day is going to be,” Staci says. “You choose to embrace the day and be grateful for what we have ahead of us for the day.”
That attitude has helped them keep a sense of balance in a busy household.
“Not much has really changed for (the kids) except he is here more often because he is not working in the afternoon,” Staci says, as her husband rough-houses with the kids in the kitchen nearby. “They are doing well because they see him doing well.”
Finding meaning and joy
Dr. Alguire’s sister Katie provided the spark that got him writing. In texts and emails, her younger brother always showed wit and writing flare. She suggested that he write a book.
“I thought his story would be very compelling,” she says. “He could write with humor, and I thought it would be in some degree helpful for him and helpful for other people.”
A book felt too intimidating, so he opted instead for a blog―with the idea that he might turn the posts into a book someday.
“I initially thought only my mom would be reading it,” he says. “And that would be fine.”
Sharing all his observations―and fears―with her in person would be tough emotionally.
Even now, he is sure his mom accounts for half the page views for his blog.
But there’s no doubt his reach extends beyond family. A number of readers have contacted him to say they have cancer or gone through a similar experience. Some have glioblastoma and are about to start treatment. Often, they say reading about his experiences helps them make sense of their own.
As an oncologist, Katie understands that connection.
“Most people feel better if they talk to somebody else who has been in the same situation,” she says. “You can’t get that with a doctor or family member. There is a bond with somebody who has shared that experience.”
While that’s gratifying, Dr. Alguire doesn’t try to speak to or for all cancer patients.
“I think that would be too grandiose,” he says. “I would be too self-conscious writing it.”
He just keeps an eye out for the unexpected moments and funny insights. He jots notes in his phone to use later in the blog.
“It’s fun for me,” he says. “It’s kind of an outlet.”
In one entry, he bemoans the steady stream of questions he faces about his health. Does he have tremors? A cough? Cognitive decline?
“I want to start hearing questions about powers I may have possibly acquired from radiation,” he writes. “Multiple superheroes have acquired their powers from radiation: Spiderman (bit by radioactive spider), the Fantastic Four (exposed to ‘cosmic’ radiation)…”
The light approach helps him face the challenge of cancer without becoming consumed by it.
“Otherwise, I’d just curl up in the corner, focus on an uncertain prognosis,” he says. “Who knows how much time I have? That’s not determined.”
As his doctor and sister, Katie hopes he will achieve a sustained remission and that the new therapies under investigation will lead to treatments that will make a lasting difference.
“I hope he will live as well as he can for as long as he can,” she says.
She admires her brother’s resilience as he faces the tough challenge of living a meaningful life in the shadow of a tough diagnosis.
“How do you overcome the sadness of that and find meaning and joy in life?” she says. “He has always been able to do that.
“He’s amazing and inspiring.”