‘Life’s not done until it’s done’
Steve Johnson is full of cancer.
But every Tuesday, he turns his thoughts and actions outward, making sure other people are full. He helps clients pick out items at the Northeast Community Ministries food pantry, helping clients pick out food and other essential items.
On this particular Tuesday, Johnson is on his knees, stocking a lower shelf with canned tomato sauce.
He spends a lot of of time on his knees, thanking God for the opportunity to serve and for the life he has, even though no one can say with certainty how long that life will last.
His cancer? It’s serious. And it’s spread. But Johnson refuses to give in to the disease. Not in body, not in mind and most certainly not in spirit.
“I have been through a lot, but I have been given so much,” said Johnson, 70.
It all began on a Saturday evening in April 2015, when his wife, Bev, noticed he wasn’t talking right.
The speech issue continued the next morning.
“We went to church and one of the members of our group is a retired surgeon,” Johnson recalled. “He talked to me for a few minutes and said I needed to see a doctor. I told him I would, the next day. He said, ‘No, I mean now.’”
Johnson and Bev rushed to the Spectrum Health Butterworth Hospital emergency room. Within an hour he was in the intensive care unit.
An MRI illuminated the gravity of the situation.
A stunning diagnosis
“They said it looks like your primary cancer is in your right lung,” Johnson said. “You have innumerable lesions in your brain, several of which were bleeding. You also have cancer in your liver and your bones.”
Johnson said that he had hit his head on the hatch door of his SUV that Saturday. He thought maybe the impact caused the lesions to bleed and the slurred speech.
He went from having speech difficulties to a prognosis that would have left many people speechless.
I believe we’re dying from the day we are born. …That part does not bother me. The only reason I would struggle against dying are my loving wife, our sons, daughters-in-law, our grandchildren, siblings and my 94-year-old mother—in a word, family. I have had an undeserved wonderfully blessed life.
Josip Divic, MD, a Spectrum Health Medical Group hospitalist, delivered the news.
“Dr. Divic came in on Monday and told me that I had stage 4 adenocarcinoma,” Johnson said. “The lesions on your brain are innumerable. This is not curable. What we have to do now is decide whether to put you in hospice or try something then put you in hospice.”
Johnson said, surprisingly, the news didn’t shake him as much as it could have.
“I am a man of faith and joy,” said the former Family Christian Stores marketing manager. “Those things did not really upset me at all. As weird as it sounds, this was a season of laughter and joy.”
Johnson and his family and friends stepped into that space where little things no longer matter. There is a freedom in that place, where perhaps the heart instinctively craves joy, and laughter.
Stripped of tomorrows, we can more easily recognize the importance of today.
Yuanbin Chen, MD, PhD, a Spectrum Health oncologist, ordered a lung biopsy.
“He confirmed Dr. Divic’s findings and set me up for my first radiation treatment,” Johnson said.
‘We know where to start’
Johnson recalls telling the doctor he considered the diagnosis confirmation as good news.
“He said, ‘No it’s not, it’s bad news,” Johnson said. “I said, ‘No, it’s good news because now we know where to start.'”
Dr. Divic later told Bev he would like to offer Steve a white coat to do rounds because of Johnson’s positive attitude. Johnson said Dr. Chen told him there was a lady in the next room with the exact same kind of cancer, but she wasn’t going to make it because she had already given up.
“I preach this over and over to people—life’s not done until it’s done,” Johnson said. “In the meantime, I’ve got living to do.”
Johnson endured eight radiation treatments at the Spectrum Health Cancer Care Center, including full brain radiation. He continues to be on Tarceva, an oral chemotherapy drug.
“Dr. Chen said most people in stage 4 cancer who have full brain radiation typically last no more than six months,” Johnson said. “He never gave me a date, or said you have six months, so we are going to keep plugging along until our Creator decides the time.”
Johnson’s attitude and active lifestyle play a part in how well he is doing.
“He is considered doing very well, although not perfect given his high disease burden,” Dr. Chen said. “His prognosis overall is not good due to extensive cancer involvement, but he has already beat the odds, typically less than six months for his situation.”
Dr. Chen said advanced technology and new drugs are bolstering Johnson’s odds.
“At Spectrum we have the capability to identify each lung cancer patient’s potential actionable mutation and offer them the most effective treatment based on the unique genetic make-up of their cancer,” Dr. Chen said.
Johnson’s particular mutation makes targeted therapy extremely effective.
“The unique biology of each individual’s lung cancer and choice of the right drug mostly determines the outcome,” he said.
Johnson feels fortunate to not have many side effects, other than fatigue, a persistent rash and memory issues.
Attending his own funeral—a celebration
“Every day begins with a 6:30 a.m. dose of Tarceva, devotions with Bev and then settling into learning new routines,” Johnson said. “By 2:30 or 3 in the afternoon, I just hit a wall.”
He had to retire from his job. But that gives him more time to spend with Bev, his wife of 39 years. Now he has found opportunities to focus on growing his and Bev’s marriage, and being a contributing member of his church and community.
“We keep looking for ways we can step in and help,” he said.
That’s the way he was raised. The way he lives.
In 1968 he returned to the U.S. from Vietnam and started attending a small college in Marion, Indiana. He became involved in a church in Alexandria, Indiana, also attended by gospel singers Bill and Gloria Gaither. He later went back to school, earning his bachelor’s and master’s degrees at age 55 and 62, respectively, and became an adjunct instructor at Cornerstone University.
After his diagnosis, his Family Christian co-workers decided to throw a “funeral” for him, so he could participate in what will someday occur without his presence.
“It was a celebration, an unbelievable gift that felt like someone else’s funeral,” Johnson said.
None of us knows from one day to the next how many days we have left, even how many minutes we have left. …Moments are everything. Moments are snapshots of eternity and we need to enjoy and live to the fullest every moment that we have.
Life continues to be a celebration for Johnson.
He loves to tell the story of how, at the closing of a recent exam, Dr. Chen turned on his chair and said, ‘Steve, you’re a miracle.’
But he knows what may be looming. He’s not ducking from it.
“I believe we’re dying from the day we are born,” Johnson said. “That part does not bother me. The only reason I would struggle against dying are my loving wife, our sons, daughters-in-law, our grandchildren, siblings and my 94-year-old mother—in a word, family. I have had an undeserved wonderfully blessed life.”
He’s not the type to feel down or sorry for himself. He’d rather look up, and give thanks for all the good that God has showered down on him.
“Cancer is not a journey I would have chosen,” he said. “However, the results of walking this pathway are ever positive. Each journey is an opportunity to learn and to live fully.”
Johnson is a self-described work addict. Cancer changed that.
“One day, one hour, one moment at a time with God,” Johnson said.
He is doing well. He and Bev are doing well. He wants others to do well, too, no matter their situation, be it cancer that consumes the body or poverty that consumes the spirit.
“My spiritual gift is encouragement,” Johnson said after helping a client search for diced tomatoes on the pantry shelves. “I try to encourage the clients in a way that does not diminish their value. I just love on them.”
P.J. Hefferan, pantry coordinator, said Johnson is a tireless worker with a great attitude.
“We have to almost beg him to sit down,” Hefferan said after Johnson straightened shelves of cranberry juice concentrate and unloaded a truck of supplies. “If he’s tired, he never shows it. It’s a blessing to have him here.”
Johnson said he’s grateful to be able to continue volunteering.
“None of us knows from one day to the next how many days we have left, even how many minutes we have left,” Johnson said. “Moments are everything. Moments are snapshots of eternity and we need to enjoy and live to the fullest every moment that we have.”
To learn more or to request a consultation, contact the Spectrum Health Regional Cancer Center at 1.855.SHCANCER (855.742.2623).