A year has passed since Ron Kopytko was told he was dying of advanced prostate cancer. Last summer, headaches and fatigue were his worst symptoms; now pain and nausea are his constant companions. Ron’s PSA is rising rapidly and time continues to evaporate as he and his family look for ways to extend, if only briefly, the days remaining.
CHAPTER THREE: LIFE AND DEATH BATTLE BEGINS
(Originally published Nov. 3, 2007 in the Kamloops Daily News)By Catherine Litt
Daily News Staff Reporter
Ron Kopytko wasn’t going to cry.
He had rehearsed this moment a dozen times in his mind and knew what he wanted to say and how he wanted to say it. He wanted to tell them he was so thankful for their kindness, and he wanted to do it without crying.
He wrote a speech on a piece of paper and folded it neatly into his pocket.
Just stick to the speech and everything will be fine, he told himself, just stick to the speech. No crying, not now, not here.Not in front of all these people.But then he heard their applause.
Their applause was so loud as he walked to the stage with his wife Leann by his side he barely heard her ask, as she leaned in close and gently squeezed his hand, “Do you see that? Do you see what they’re doing?”
They were standing for him.
For the two of them.
They were on their feet, a standing ovation 400 strong, and when he saw them he knew.
He felt the full weight of the moment as he stared out at the sea of faces, and his eyes filled with tears.
*************
It had been almost a year since Ron Kopytko learned he was dying from prostate cancer and he was beginning to feel time slipping away.
He had spent the first eight or nine months after his diagnosis free of major sickness, aside from headaches and fatigue. During those months, he was the picture of health, not the image of a man whose cancer had spread, and certainly not the image of a man who had 12 to 18 months to live.
When friends saw Ron at the Relay for Life fundraiser in June, he was tanned and smiling. He walked tall and his stride was effortless, his gaze alert.
But, as the weeks progressed, Ron’s health deteriorated, and by late July he had begun to wonder if maybe his cancer had caught up with him. He had constant pain under his lower left ribs and throughout his lower back. “It feels like getting hit in the groin,” is how he described it.
He was dizzy and nauseous most of the time, too, and wasn’t sleeping through the night. Dark circles surrounded his eyes, which seemed troubled and distant now; his face was more ashen than tanned, and when he walked he took slower, shorter strides.
Since his diagnosis in October 2006 – and, indeed, long before that – prostate cancer cells had been circulating throughout Ron’s lymphatic system. Doctors put him on hormone therapy to reduce his testosterone, and for much of the winter and spring that seemed to work.
But Ron’s PSA level was climbing again, quickly creeping upward from 2.5 in March to 7.2 in June and 14 in August.
He was approaching the one-year mark and time was running out. He needed to make some decisions.
**************
On Sept.12, Ron and his wife drove to Vancouver to meet with Dr. Martin Gleave, a cancer specialist and director of The Prostate Centre at Vancouver General Hospital.
The appointment wasn’t until 9:15 the next morning but they arrived the night before to avoid an early morning commute over the Coquihala Highway. Ron hadn’t been feeling well for weeks and long rides in the car didn’t help. Getting to Vancouver a day early gave him a chance to recover.
That night in the hotel room, he hardly slept. It was partly the nausea but mostly his nerves. “What do you think Dr. Gleave will say?” Ron asked Leann in the middle of the night.
In their luggage was a computer disc with the results of a bone scan done two days earlier in Kamloops.
“What do you think it will show?” Ron wondered.
They both wondered if it would show that the cancer had entered his bone marrow. Maybe that would explain his rib and back pain.
They wondered, too, if it was time to consider chemotherapy. Dr. Gleave had mentioned it briefly on their last visit six months ago, saying it could be an option near the end.
The end. It seemed like such a cold, harsh way to talk about his future but Ron was used to discussions couched in terms of finality. His cancer was terminal. It served no one to pretend it wasn’t. So any talk of treatments meant extending his days not beating the cancer.
But was chemo how he wanted to spend his final days? Chemotherapy was aggressive, it was meant to be, and it often left patients feeling sicker than before. It might extend his life but would it be worth the added suffering?
There were many questions Ron needed answers to and he was anxious to hear from Gleave the next morning.
********
Ron and Leann woke early that morning and took cab to the clinic.
They arrived at a high-rise building across from Vancouver General Hospital and rode the elevator to the sixth floor where Ron checked in at the Prostate Centre and they both took a seat in a waiting room full of men with grey hair.
The older men might have wondered what a young man like Ron was doing at a prostate cancer clinic. He looked much younger than his 40 years.
But Ron was too lost in thought to notice anyone, or to sit for long. He got up, paced, looked at the photographs and medical certificates on the waiting room walls. He glanced past the reception desk to see if he could spot Dr. Gleave but all he saw were nurses with clipboards, disappearing into rooms.
“He’s nervous,” said Leann, watching her husband.
Ron’s demeanor had changed since the summer, if only subtly. There was a kind of urgency about him now. He had grown frustrated with the doctors and their medical jargon. He felt time slipping away. He felt himself getting sicker and yet it seemed none of his doctors (his team included his GP, an oncologist, the urologist and the Vancouver specialist) could, or would, give him clear answers. How much time is left? What can I expect in the days and weeks ahead?
“It’s not like I’ve been sitting at home waiting for everything to happen,” said Ron. “I just kind of wanted to see the bigger picture. I mean, I know what the end result’s going to be … but …” he paused. “… It gets a bit frustrating.”
The constant nausea wasn’t helping. As on most mornings, Ron woke up feeling sick to his stomach that day in the hotel room. He didn’t know what was making him sick every day – if it was the cocktail of medications – the Casodex, Zolodex, hydropmorph contin, or naltrexone – or if it was the cancer, but it came in waves throughout the day and night and he sometimes wondered if it wouldn’t kill him before the cancer did.
He also was worried about his PSA; it was up again, to 19. He found that out a week earlier during a visit with his family physician, Dr. Grant Del Begio.
Ron had asked Del Begio what it meant in terms of his life expectancy but all the doctor would say was that terminally ill patients can sometimes gauge how much time is left by how fast their health declines. Symptoms that worsen by the week usually mean the patient has weeks to live. Symptoms that worsen by the month mean death is further away.
As he pushed himself up onto the freshly papered exam table to wait for Dr. Gleave, Ron thought about what Del Begio had said.
“You know, I went eight or nine months without really feeling anything too drastic,” said Ron.
“And this last month, I feel lousy, so does that mean another eight or nine months?”
Ron had hoped his meeting with Dr. Gleave would provide the answer.
Instead, it left him with more questions.
Gleave chose not to read the bone scan – opting to wait for a report from Kamloops – and he spent much of the appointment talking about a clinical trial of Casodex, one of the hormone treatments Ron was already on, and less about Ron beginning chemotherapy. The clinical trial would see Ron increase his daily dosage of Casodex to 150 mg, three times his current dosage, with the hope that it would drive his PSA level back down.
Since his diagnosis, Ron had learned a lot about PSA, prostate-specific antigen, the protein made by the prostate. He knew it was a key indicator of how well his treatment was doing.
“Ultimately now you’ve got a rising PSA and that means you’ve got what’s called a hormone-resistant phenotype,” said Dr. Gleave.
The 50mg dosage of Casodex was no longer doing its job; it wasn’t blocking the antigen receptor in Ron’s prostate. In other words, it wasn’t reducing the amount of testosterone in his body, and it was his testosterone that was feeding the cancer cells.
Ron was a good candidate for the clinical trial, said Gleave, there was no need to begin chemotherapy at this stage. Tripling the dosage of Casodex might do the trick.
“What we’re trying to do is apply the brakes to a disease that’s progressing,” he told Ron.
“Most of the data would say that giving chemo now as opposed to later isn’t going to make that much of a difference.”
But surely he knows it’s mid September, wondered Leann, as she listened to Dr. Gleave. It was a month away from the one-year date of Ron’s diagnosis. They had little time to waste and a clinical trial seemed risky at best.
When Gleave mentioned a second clinical trial – one in which half the patients would get a placebo – Leann looked at him and said, “It just seems like playing Russian roulette.”
Even their Kamloops urologist, Dr. Simon Treissman had cautioned them about doing a clinical trial, though when Ron pressed him for direction he said it was ultimately up to Ron to decide, a decision Ron felt ill-equipped to make.
Ron was tired of having to press doctors for information. He was tired and he was sick and he just wanted some answers. He wanted Gleave to tell him about his options for chemotherapy but all he and Leann heard about were the clinical trials.
When Gleave left the room to get some paperwork, Ron’s patience had run dry.
“It’s not like I want to have chemo,” he said to Leann. “I just want some answers. I’m tired of hearing ‘Well, we’ll cross that bridge when we get to it.’”
“Well, at least he says he’s giving you some direction … but …,” said Leann, equally frustrated.
“But Treissman told us not to go that way,” said Ron. “Who do I listen to anymore? I know Gleave is supposed to be the best at what he does, but you were sitting in the office with me when Treissman said he wouldn’t recommend doing that.”
Ron paused.
“Maybe I have too many doctors.”
After the appointment, as they waited for a taxi back to the hotel, Ron’s cellphone rang with a call from Dr. Del Begio’s office. Ron’s PSA was 27.
*****************
A week later, on Sept. 18, Ron was due to see the oncologist in Kamloops and he wasn’t looking forward to the appointment.
Dr. Ardashes Avanessian had been the one to tell Ron a year ago that his cancer had spread and that he would die from it, that he had maybe 12 months to live – crushing news delivered in a matter-of-fact tone that did little to ease the blow. The thought of revisiting that setting on the eighth floor of Royal Inland Hospital brought back memories Ron wanted to forget.
But he needed another opinion; he was still undecided about the Casodex trial and chemotherapy. Besides, he still didn’t know the results of his bone scan.
Everything was eerily familiar when Ron and Leann arrived for the appointment that afternoon. Right down to the examination room.
“Do you notice something?” Ron asked Leann.
“This is the same room.”
Room 803, with its four, green vinyl chairs, stark white walls, exam table and lonely little aloe vera plant on the window sill was the same one Ron and Leann sat in almost 12 months ago, crying and wondering how they would tell their family the news.
“Oh my gosh, it is, isn’t it?” said Leann.
**************
The meeting with Avanessian, though, would come as a relief after the frustrating appointment with Dr. Gleave a week earlier.
Though Ron’s ultimate prognosis hadn’t changed, Dr. Avanessian had good news to report: the latest bone scan came back clean. His rising PSA meant the cancer was reactivated but at least it hadn’t yet spread to his bone marrow.
“Thank God,” said Leann.
As for chemotherapy, Avanessian explained the options in language refreshingly devoid of medical jargon.
He told Ron and Leann about a type of chemo that was used for prostate cancer, one with less severe side effects. Docetaxel is given to patients with advanced prostate cancer and can extend the median survival by two or three months, or in rare cases up to two years.
“In your situation, it’s better to start before you run into trouble,” he said.
“Can it beat the cancer up enough to push it into remission?” asked Ron.
“Yes,” said Avanessian.
But there was also the risk that it wouldn’t work, he added. If that was the case, Ron would be pulled off the chemo. They would know within six weeks of the start of treatment.
First, Ron had to decide. What would it be?
The chemo? Or the Casodex?
*************
That week, Ron and Leann could think of little else.
If he chose chemo, it could make him sicker; ruin his remaining weeks and months with his family. But what were his options, wondered Ron – the Casodex trial? The double-blind trial? Like Leann had said, the thought of putting all their hopes on clinical trials that may or may not work felt too much like playing Russian roulette. Ron simply couldn’t gamble away what little time he had left.
But the chemo, that was a gamble, too. There was no guarantee it would work and, if it did, it might only add a couple of months to his life.
“At this point it really feels like that’s the only chance I have of fighting against the cancer,” Ron told his urologist, Dr. Treissman.
“You need to realize that you’re going to make yourself sick,” said Treissman.
You’ve had a good year, he said. You’ll have more time than the initial 12 months. It seems like the hammer is starting to fall because your PSA has gone up so rapidly in such a short period of time. It’s worrisome, but it’s still not high in the sense of where it was.
“I’m already sick,” said Ron. “I’m just trying to fight this for a while.”
**********
That Saturday, Leann’s family drove down to Kamloops from Quesnel.
It was an important day. The community was holding a fundraiser at Colombo Lodge to help start a trust fund for the Kopytko children – Jake, 11, and Alyssa, 7 – and relatives from both sides of the family wanted to be there to support it.
Hours before the event, Leann’s mom, Jean McKenzie, and Leann’s older sister, Pat, along with Pat’s husband and their son, gathered at the Kopytko home.
As Ron got dressed in the bedroom, Leann and her mom sat at the dining room table and thought about the fundraiser, about the overwhelming support from the community.
“Out of this whole thing, this whole experience, if you could try and draw any good from it that would be the good,” said Leann.
“It would be the warmth that we’ve had from people. It would be the strangers who stop us on the street and ask us how Ron’s doing.”
***********
At the fundraiser that evening, Ron and Leann were overcome with emotion.
There were nearly 400 people in attendance, some family and friends but mostly strangers – people who had never met Ron but had been so moved by his story they felt compelled to attend.
At one point during the evening, a young woman walked over to Ron, hugged him and thanked him. She was crying and her husband was standing beside her.
“If it wasn’t for your story, my husband wouldn’t have gone to the doctor,” she told Ron. “He wouldn’t be here.”
There were many such emotional moments during the evening, and for Ron it was almost too much to bear. By the time he was called to the stage to say a few words, he could only get a sentence or two out before he was too overcome with emotion to finish his speech.
As Leann continued to thank those in attendance, Ron looked around the room and saw, at once, 400 people who cared about him and 400 reminders that he was dying.
Posted on November 3, 2007
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