In The Community

A Haircut for her ‘Superman’

A Haircut for her ‘Superman’

For eight years, the Algoma Thunderbirds Varsity Athletics Program has been hosting a Cancer Awareness Weekend in an effort to raise awareness and funds for cancer research.

This year, the annual event, dubbed nationally as the Shoot for the Cure by U Sports (formerly the CIS), will hit closer to home for Varsity Sports Coordinator, Rachel Johnson. In May 2016, Johnson's father, Lynn, was diagnosed with laryngeal (throat) cancer. Despite his brave and courageous battle, he died only two months later from the still incurable disease.
 
"My dad impacted my decision to go forward with the Shoot for the Cure event and make it the biggest to date," she begins in her office in the George Leach Centre. Planning for the 2017 event started before Johnson's father received his diagnosis or had even fallen ill in 2016.
 
Johnson's father realized something was wrong in April when he woke up with a large baseball-sized lump on his neck. The lump emerged overnight, and other than a sore throat and persistent cough, no tell-tale symptoms had been present. "There was nothing out of the ordinary until that lump appeared. The cough had started in February but who doesn't get a cold in February? We didn't think anything of it. In May, we got the diagnosis and in June he started treatment in Sudbury."
 
Even with the diagnosis of cancer, Johnson and her family weren't phased. "When my dad got diagnosed, he had already been sick many times over the course of my life and especially over the course of the past two years. So when he got diagnosed with cancer, it didn't occur to me or anyone in my family that it wouldn't be okay and that he wouldn't survive. It was like okay, he has cancer, he'll get treatment and surgery, he'll recover, and we'll go back to our normal lives."
 
And for the Johnson family, up until 2016, normal had included constant hospital visits, medical procedures, physical ailments, as well as surgeries. As a child, Lynn suffered from polio, which resulted in a lifelong battle with post-polio syndrome. The syndrome causes a deterioration of muscle and vascular structure. "He had more surgeries than I can count. I remember my dad having his first surgery when I was around when I was only five. He had dozens over the course of my life, which is why when he got sick again, it was just another thing. Another hurdle, really. It was normal for us. My dad having surgery and being sick was a very normal, routine part of my life."
 
In 2014, Lynn had a procedure to repair several arterial blockages: one in his groin, one in his aorta, and one in his lower left leg. The blockages put his health in serious jeopardy and resulted in prolonged hospital stays as well as a below-the-knee amputation of his left leg. "His left leg had had several surgeries over his life. Scar tissues and other abnormalities in the area of his leg made it much more difficult for doctors to place the vascular grafts. And as a result of the blockage, his left leg's vascular repairs were failing. In October of 2014, he had to have a below-the-knee amputation."
 
Further complications arose in May of 2015. Part of the amputation became infected and resulted in another surgery, and a complete above-the-knee amputation, leaving only about six inches below the hip. "After that, however, he was doing great. He was on the road to recovery. He was learning to walk, he had a prosthetic. He was making huge progress.  A few weeks before the cancer diagnosis he was doing his physio and had walked farther than anyone had ever expected him to be able to, never mind six or eight months post-op," she adds with a smile.

"My father was tenacious. As a kid, he had been given crutches to walk with because of the polio. The doctors told him he would never walk without crutches and never play sports. One day, he told his mom he was done with them and threw them aside. And he proceeded to walk, play hockey, and play baseball. He lived as normally as possible and kept up with his brothers and sisters. He didn't let his health slow him down."
 
She pauses, wiping tears. "That's kind of how he tackled life. People told him he couldn't or wouldn't. He would laugh at them and then do it. I think that's what's so upsetting about all of this. It's so frustrating to know that he fought all of his life and had gone through all of this and been successful only to be faced with this challenge [cancer] that he couldn't overcome. It's really unfair. He had a lifetime of battles. He didn't deserve this."
 
Upon receiving the diagnosis of cancer, and being informed that it had already spread to neighbouring arteries and was approaching his spinal cord, Lynn continued his fight. "Surgery was presented in June after the diagnosis and my father didn't hesitate about the risks or the outcomes. He didn't even think about not doing the surgery once."
 
His first surgery involved an emergency tracheotomy when the tumor compromised his airway, followed by a second surgery to make his tracheotomy permanent. A third surgery removed the large tumour in his throat. The third surgery required a large tissue graph from his arm and skin graphs from his leg. "It was a massive procedure and it was modestly successful. They removed the tumour but then they also had to remove far more of his vascular structure than they expected to because the cancer had engulfed so much and it had spread so much. They removed the entire tumour but the sacrifices to remove the cancer were too great to heal or recover."
 
Come July, the reconstruction of Lynn's throat was failing. "The doctors did a procedure to explore and also to consider attempting to repair those initial skin grafts and reconstructions. The option dad had was to have another reconstruction. So more skin grafts from other parts of his body, and another invasive surgery. His doctors explained to him that with this surgery, he would never speak, that includes with assistive devices. Where he was at right now, he could use a voice box or have a permanent prosthetic that could help him speak. But with this surgery, all those options would be gone since they would have to remove his entire voice box and vocal cords and he would never regain enough strength to be able to move around. So basically, he would be confined to a bed with limited functions."
 
For Lynn, this surgery wasn't an option. He had told my mom, myself, and my brother before all of this that he didn't want to live that way. He didn't want to be alive and not living. The word the doctor used is that he would be 'present', living in a hospital or in long-term care and would be very close to a vegetative state."
 
Family and friends visited Lynn two days prior to his death. "We had a really good day. He was medicated but aware. We had family come from all over Ontario to have that moment with him. It was truly special. He told us that evening he was happy, he was okay with this, and he said he wanted to 'go up', which I understood. And I told him it was okay to be done with all of this." She wipes her tears.  
 
The next day, the Johnson family made the decision to turn off his ventilator. Lynn passed away on July 14th, surrounded by family.
 
At the funeral, members of the varsity program, including student-athletes, coaches, and more, attended.
 
"We called him superman. I've never seen him give up or quit anything. So hearing him tell me that he was done meant that he was done and he had done everything he could. No one should ever have to fight so hard in their life. That's why this is so important to me."
 
Johnson has set an ambitious goal to raise $10,000 in support of the Canadian Cancer Society. Moneys raised will fund life-saving cancer research, offer vital information on cancer, and provide compassionate support services to people living with cancer and their families. "I know $10,000 is nothing in the grand scheme of research and cancer. But if I can help make it easier for one family, than that's what matters. Even if I can't make a financial difference, if someone who has more ability or power or awareness in the world hears what we're doing here at Algoma and shares that message, or is inspired by us and it creates a snowball effect, than we're doing something right here."
 
She pauses. "This event has always meant something to me because cancer touches the lives of everyone at some point or another unfortunately. The first year I worked here, we did this event in honour of Mark [Kontulainen, Athletics and Recreation Director], who was undergoing his own battle. It was personal because cancer was picking apart at my family. These people here are my family, and I will stop at nothing to make sure they are never affected by this or have to watch their family go through what I just went through. I hate coming into work to hear that a colleague, a student, an athlete, is being affected by this disease, or worse, has been diagnosed. I now know what that means and the full extent of those treatments and how hard it is."
 
This year's Shoot for the Cure is taking place on Friday, February 3, 2017. During half-time of the men's basketball game, Johnson will be cutting and donating her hair to Locks of Love. This is the second time she has donated her hair at an Algoma cancer event. This time, however, her haircut is in honour of her own Superman.
 
To donate, please visit the Algoma Thunderbirds Varsity Athletics Program page.