Oncology nurses rally around colleague at Sudbury, Ontario Relay for Life

SUDBURY, ONTARIO (June 8, 2009) - Thousands of participants sport daffodil-coloured t-shirts. There are hundreds of balloons dancing in the wind and almost as many strollers. The field at Cambrian College is filled with participants, young and old, anticipating the start of the 10^th annual Canadian Cancer Society Relay for Life. Naked Soul, one of many bands playing at the relay, performs Melissa Etheridge’s I Run for Life, a song Etheridge wrote after her own battle with breast cancer.

Amid this crowded sea of people, shimmering in the golden evening sunlight, there is a special team of nurses, huddled together against the wind, waiting patiently as their dear friend and colleague greets her many well-wishers. These greetings, which resemble a receiving line at a wedding, last nearly one hour. The woman at the centre is clearly loved.

Uniform shops often carry a selection of trinkets – mugs, lapel pins, baseball caps – with sayings alluding to the fact that nurses care a great deal about their patients. In fact, some colleges used to honour graduates with awards for displaying exceptional bedside manner. There’s a good chance Danielle Richer would have won one of those awards.

Richer, 43, has spent nearly half her life treading through the hallways of Sudbury’s hospitals. She has been working as a registered practical nurse (RPN) in the oncology unit at the Sudbury Regional Hospital for two years. She graduated from college in 1991 and before that, she worked as a nurse’s aide. She is, by all accounts, a devoted health care practitioner with a big heart.

In October 2008, two months shy of her 43^rd birthday, Richer was diagnosed with cancer. Not surprisingly, she was shocked and then devastated.

“I wasn’t really thinking,” Richer says. “I went through all kinds of emotions and thought about having to tell my family.”

She underwent emergency surgery. When Richer woke up, she discovered her family, which includes her husband Darren and their three children, aged 15, 17 and 21, had already been informed of her diagnosis.

Richer speaks in hushed tones barely louder than a whisper. She is gracious and apologizes – her lips are dry and she finds it difficult to speak. After the sun sets, the weather turns chilly. Richer is in pain and she is kept warm by several blankets. In her wheelchair, she seems small and lost in the mess of blankets. Her friends and colleagues are attentive and keep a close eye on her. Right now, her body is fragile, but her will is strong. Her friends concur – Richer is a natural-born fighter and one very resolute woman.

June 4 and 5 were not good days. Richer, who is currently a patient on the fourth floor at the Laurentian site, says she felt unwell, but she focused on the relay and was determined to attend. She wanted to be there – for herself, her friends, her family and the other survivors. Friday afternoon, her doctor said she was strong enough to attend.

“I’m overwhelmed to see everyone here tonight,” Richer says. “I didn’t expect everyone to come for me, to see me and to support me … Even if people are feeling unwell, they’re still here.”

When her colleagues found out about Richer’s diagnosis, they rallied to support her, while commemorating their patients who have succumbed to cancer or continue to fight the disease.

The theme of the Relay for Life, which took place June 5-6, was A Night of Heroes. With this in mind, the oncology staff donned pale yellow capes and adopted their own fitting moniker – Live the Moment – to remind themselves of the importance of the small moments in life. The team is dedicated to Richer.

Nicole Foy, team captain, says the capes, many of which are adorned with screened images of Richer, symbolize hope and the strength of cancer patients. Richer’s cape is green – the colour of life.

“Our heroes are our patients,” Foy explains. “They are the ones who’ve fought the battle. This is in their memory.

“Tonight is a celebration of life and of the heroes who teach us what life is really about. They are our true teachers.”

In this temporary tent city, team Live the Moment stands out with its elaborate set-up. It is clearly the work of nurses – meticulously organized with nearly every realistic convenience. Their massive tent could easily sleep eight or 10 people. There’s a full complement of snacks and goodies inside to satiate hungry participants in the long hours ahead. There are also several bottles of insect repellent. The tent’s canopy is adorned with solar-powered patio lights and there is enough seating to fill a small conference room. There is even a double bed set up, with plush blankets and fluffy pillows for sleepy walkers. This is a tent designed to ensure comfort, camaraderie and good conversation.

A mulberry tree has been brought in and decorated with photos of colleagues and loved ones who have fought cancer. Although Richer’s illness is on the minds of her colleagues, the atmosphere at Live the Moment headquarters is festive and celebratory. Her arrival is anticipated and her colleagues look forward to the relay.

“It took my mind off the immediacy of Danielle’s illness,” Foy says of the planning process.

Foy says working together has been therapeutic for team members, helping to alleviate feelings of shock, isolation and helplessness wrought by Richer’s cancer diagnosis. Live the Moment has been planning this evening for months and has raised more than $4,000. Foy says Richer has been involved from the beginning and this night – this moment – represents a victory for the entire team.

Undaunted by the prospect of walking all night, Foy says nurses are used to nights and shift work.

“Being here all night is nothing compared to what (our patients) go through,” Foy says.

Darren Richer says the relay is a family affair – with their children volunteering at the event – and added it was very important to him and his wife that they participate as a unit.

The Richer family has received incredible support. Darren says he is moved to see how many friends his wife has and to see how many people support her.

People came from as far away as Huntsville, Kapuskasing and Kirkland Lake to participate and in the 10 days prior to the event, Darren says the family raised more than $3,000 in donations.

Cathy Burns, a unit manager at the Sudbury branch of the Canadian Cancer Society, says the relay is a unifying force.

“The community comes together to take up a fight,” Burns says. “I don’t think there’s anyone at Cambrian College tonight who hasn’t somehow been affected by cancer. … This shows that we’re not alone; we’re here to support each other in this journey.”

For Burns, the survivor lap is one of the evening’s highlights.

“You look at that lap and each year, there are more and more survivors walking,” she explains. “If someone asks me whether research is working, I can say yes, because we have more and more survivors walking that lap every year.”

With 150 teams and more than 1,500 participants, the 2009 Relay for Life raised approximately $325,000 in donations. Burns says that money is used to fund cancer research, the local volunteer driver program, the peer support program and the information outreach program. Approximately $100,000 will be used to support the clinical trials program at the Northeastern Ontario Regional Cancer Centre (NEORCC).

Richer’s journey continues. She knows some days will be better than others, but she vows to keep fighting.

“Without this day and without this support, none of the survivors would be able to go on,” she whispers. “I think it’s amazing that, year after year, people continue to fight. … If I’m not physically here next year to do this, I’ll be here in memories, in heart and in soul. I’ll be smiling.”

Harm reduction and HIV/AIDS

TORONTO, ONTARIO (Aug. 18, 2006) - Drug addiction is a hot topic at the 16^th International AIDS Conference in Toronto.

At the convention, experts agree the link between HIV and injection drug use is undeniable, and studies show HIV infection follows heroin production through Eastern Europe and Asia.

But it’s not just an international problem.

“People who use drugs make up the second largest group of people infected with HIV in Canada,” said Alana Klein, a senior policy analyst for the Canadian HIV/AIDS Legal Network. “In Canada, the prevalence of HIV among people who use drugs is as high as 20 per cent in some cities.”

Despite the need for services, programming is inadequate.

“Unfortunately, full coverage remains a distant goal,” said Klein at a conference session. “We’ve had sterile syringe programs in Canada for 20 years, and yet in Ontario, estimates are that only five per cent of the need is being met.”

Vicki Kett, the manager of community services at Sudbury’s Access AIDS Network, says nearly 60 per cent of the city’s HIV-positive population was infected through injection drug use. Kett estimates that approximately 13 per cent of injection drug users (IDUs) in Sudbury are HIV-infected.

In his opening remarks on Aug. 13, Mark Wainberg, co-chair of the 16^th International AIDS Conference, recognized the need to increase services for IDUs in Canada.

“Mr. Harper, don’t you understand that needle exchange programs within Canada save lives?” Wainberg asked the notably absent prime minister at the opening gala. “We need to expand these programs and not close them down. When it comes to harm reduction, Canada should not follow the lead of countries that have little to teach us about public health.”

Lunch hour protest at AIDS 2006

Wainberg was referring to Insite, North America’s only supervised injection site, which is located in Vancouver’s infamous Downtown Eastside.

Insite was established as a pilot project in September 2003. For nearly three years, it has provided a safe place for IDUs to inject. It also provides immunization and wound care services. There are currently more than 7,200 users registered with Insite. Studies indicate the program has prevented close to 460 fatal overdoses and has reduced the number of people sharing needles by 70 per cent. The number of program participants seeking treatment for their addiction is also on the rise.

Insite operates under a federally-mandated exemption issued by Health Canada. The exemption is up for renewal on Sept. 12 and Insite’s future is in question.

On Aug. 16, protestors assembled at the 16^th International AIDS Conference and staged a lunch-hour rally in downtown Toronto to raise awareness about Insite and its value to Canada’s IDU community.

“We’re mad as hell that the government is looking at closing a safe injection site that saves lives,” said Terry Howard, the prison outreach co-ordinator for the British Columbia Persons with AIDS Society in Vancouver. “If you’ve even been to Vancouver and you’ve seen the Downtown Eastside, you would know what a change it’s made over the last year.”

Protestors blocked traffic at three major intersections, including Bloor and Yonge Streets. Hundreds of cars were blocked in both directions for nearly five minutes. Protestors held more than 300 large banners promoting Insite and chanted over the sound of horns.

According to Howard, Insite has made a positive impact on Vancouver’s street-involved population.

“It’s been huge,” Howard said. “There aren’t women dying in alleys anymore. There are still people who are overdosing in alleys, but there are a lot less than there were before. They’re now supervised when they inject, so if anything goes wrong, they’re actually taken care of right on the spot.”

Gillian Maxwell, a spokesperson for Insite for Community Safety – the protest organizers – said closing the site will be disastrous for high-risk populations.

“If the doors close in September, people will start to die,” Maxwell said at a press conference. “We also want to tell Mr. Harper if Insite carries on, it isn’t just a Vancouver problem – it’s a national problem … If we’re going to get on top of HIV in Canada, we have to provide safe injection for people.”

The situation in Sudbury

Sudbury’s needle exchange program, The Point, has been serving the city’s IDU population for 14 years.

Satch Pearson, The Point’s needle exchange worker, says he estimates the service sees at least 200 regular clients and exchanged approximately 160,000 needles in 2005.

Harm reduction services have existed in Sudbury for many years. What began with informal distribution has evolved into a multi-faceted program.

“When it started, all we did was hand out a few needles and some condoms,” Pearson explains. “Pretty soon we had alcohol swabs, and then distilled water. Now we have little filters for them (drug users) to use and we’re handing out (tourniquets).

I would imagine, in the future, when people start to figure out how much the infection is actually costing us, they might expand a bit in terms of providing more services – not just the actual supplies – more services in general.”

Pearson says there isn’t enough demand to justify a safe injection site in Sudbury, but he supports the Vancouver initiative.

“I don’t think that’s going to happen (here),” Pearson laughs. “I don’t think we have enough call for it. I’m sure there are a few people who would like to see one, but I don’t know how many would actually use it. It’s kind of a small town, so it’s pretty hard to be anonymous here.

People are afraid to be seen going in and out of a place like that. If you had a safe injection site, everybody would know there’s only one reason you’re going there.”

There have been hints that a crack pipe distribution program will be introduced in Sudbury. Pearson believes it would benefit the community.

“If you have your own pipe, you don’t have to share,” Pearson explains. “It’s the sharing that causes a lot of problems.

When you’re sharing a pipe, if you have sores on your mouth and the other person has sores too, and that person has hepatitis C, you could very easily be infected by sharing a pipe. It’s better if everybody has their own.”

Harm reduction programs are under threat. But their benefits to IDUs, and the public, are undeniable. For more information on the harm reduction and needle exchange services offered in Sudbury, visit The Point at 105 Elm St. or call Pearson at 673-4396.

Gregory Maskwa at work

SUDBURY, ONTARIO (Aug. 12, 2006) - Gregory Maskwa held a unique position – he made a career from his art. Maskwa was commissioned by designers in New York City to paint murals, he worked as an illustrator at various magazines, and he designed a silk scarf, known as the Wreath of Roses, that was sold at Buckingham Palace to commemorate Queen Elizabeth’s 40th year on the British throne.

Maskwa works from his home now, creating more personal artwork. His newer pieces teem with the themes of vulnerability and strength. His struggles in life are evident on his canvases. He says painting keeps him sane.

“If I don’t do my artwork for a while, I get wiry,” he explains.

His newest piece, The Healer, is not yet complete. It’s an ode to tenacity and Maskwa’s own ability to overcome the hardships he’s faced.

“There’s a very vulnerable part of her, but she’s coming out of the deep water – she’s rising up,” he says. “I think of myself as a survivor.”

Maskwa completed Things Could be Worse: a self-portrait in pain, in 2003. It was featured in the PAIN Exhibit (www.painexhibit.com), an online gallery depicting various facets of chronic pain.

Beyond the Betrayal of the Senses was completed in 1997-98 as Maskwa’s partner, Harold, was dying of AIDS.

“It’s about the body being a vessel for the soul, and how you pass on and go on to a new life.”
Maskwa’s life is reflected in the pieces on display throughout his home.

“You can’t separate your art from your life,” Maskwa explains. “Your art is a reflection of your experiences, so how could it not be a part of my artwork? Even when I consciously don’t think it is, after it’s done, I see the connection.”

HIV and AIDS in northern Ontario

SUDBURY, ONTARIO (Aug. 12, 2006) - Gregory Maskwa is kind – much kinder than he needs to be – considering his pain and his memories. When we meet at his home, he immediately offers me a beverage, introduces me to Mister (his beloved miniature pinscher) and implores me to make myself comfortable.

Then he begins to talk about his life – as a successful artist in New York City, as a gay man in the 1980s, and as a person living with HIV/AIDS (PHA).

In the early 80s, Maskwa, now 53, was the New York City editor for The Connection, a Long Island-based newspaper. He first encountered HIV/AIDS while visiting his friend, Kenny Ramsaur, in one of New York City’s most prestigious hospitals.

“They didn’t have a name for it – it was called gay cancer,” Maskwa explains. “I went to visit (Kenny) and all his food was piled outside his room. Nobody would go in the room. Nobody was taking care of him. The worst thing was that he could hear the orderlies outside his door taking bets on ‘how long the faggot in Room 12 was going to live.’ That really outraged me.”

It was then that Maskwa got involved. He began writing on AIDS for local publications and helped organize New York City’s first vigil. His articles appeared in publications such as Time Magazine and the New York Times. He also contributed to 20/20, Bill Moyers’ Journal and a BBC documentary on Ramsaur.

“How could I not (get involved)?” Maskwa asks, rhetorically. “Somebody you hold dear to you and they’re being treated like that in a major hospital? I was so angry.”

Maskwa keeps binders of information on the epidemic. His archives reach back to the 1980s, before the virus had been identified or the illness named. There are photos of friends before they were infected and at different stages of illness – emaciated, covered with Kaposi’s sarcoma lesions (dark skin lesions resembling bruises that affect up to 20 per cent of AIDS patients) and, finally, too skeletal to look human.

“It became extremely depressing because everybody I knew was dying,” Maskwa says. “Then I would make another group of friends and they’d all die. I’d have this survivor guilt, like ‘how come I’m not dying because all my friends are dying?’

I didn’t want to answer my phone because I knew it was about somebody else who had died. Before medication, people died of opportunistic infections that were horrendous. It happened very quickly – you were diagnosed and then you had three, maybe six, months.”

He pauses often as he remembers friends, partners and colleagues. Maskwa looks down silently and closes his eyes as he recalls the way their bodies succumbed to illness. He vividly remembers their suffering.

Maskwa isn’t sure how many friends he’s lost to AIDS, but they number in the hundreds.

“I used to keep a little notebook,” he explains. “When it reached 100 I stopped counting. That was in the very early 90s. Those were all personal friends, not acquaintances – friends.”

Maskwa was diagnosed with HIV in 1994, while living with his partner, Harold.

“Harold started to get sick,” he says. “He was tested and he was HIV-positive. I was an AIDS educator. I had gone through the AIDS crisis for 20 years and I felt like I was invincible.”

Harold passed away in 1998.

Maskwa retired in 1996 because of his illness. He’s unsure how long he’ll be able to paint. He has severe neuropathy, which causes painful nerve damage and can lead to a loss of function. He suffers from extreme fatigue, which causes poor co-ordination and frequent blacks-outs. He also lives with chronic pain.

“I’m not always able to walk and I’m in tremendous pain,” Maskwa says. “I’m just so tired of the pain in my legs and arms. I have no stamina to go out and do normal things. There are many things I’d like to do that I can no longer do.”

Loneliness is also a consequence of Maskwa’s illness.

“My world is getting smaller and smaller,” he says. “I’ve been the caretaker in both relationships (he was in a long-term relationship that ended before he met Harold) and now I’m by myself. That’s hard.”

Maskwa lived in New York City for 25 years. He returned to Sudbury two years ago to get reacquainted with his family. Despite the challenges of his past, Maskwa speaks serenely of his future.

“I don’t think I have very much time left and I want to get to know my nephews and nieces, and to get closer to my family,” he says. “I think New York is one of the best cities in the world, but Sudbury is so far at the other end of the spectrum that I do enjoy it. It’s nice to see the wild flowers and to hear the birds in the morning … just the little things, you know?”

Maskwa is only one of many millions of PHAs throughout the world. UNAIDS, the Joint United Nations Programme on HIV/AIDS, estimates that in 2005, 40.3 million people worldwide were living with HIV and 3.1 million died from the illness. Globally, more than 25 million have died since the infection first appeared in 1981 and in 2005 alone, 4.9 million people were newly infected.

Toronto hosts the 16^th International AIDS Conference (www.aids2006.org) Aug. 13-18. It addresses the issues surrounding the HIV/AIDS epidemic – considered one of the worst humanitarian disasters.

For five days, PHAs, health care practitioners, researchers, policy-makers and activists will meet to network, share information and research, and offer hope to those living with and affected by the virus.

Speakers include Bill Clinton, Bill and Melinda Gates, Richard Gere and Stephen Lewis - the UN Special Envoy to AIDS in Africa. Canada’s governor general, Michaëlle Jean, opens the conference. The opening ceremonies include performances by the Barenaked Ladies, Alicia Keys, Our Lady Peace, Chantal Kreviazuk and Canadian soprano Measha Brueggergosman.

More than 22,000 delegates from all parts of the world are expected to attend. Access AIDS Network, a Sudbury-based organization, is sending 14 of its 72 clients to the 16^th International AIDS Conference, known as AIDS 2006.

Sylvie Daviau, the agency’s support services co-ordinator, says the conference can play an important healing role in the lives of PHAs.

“I hope my clients learn, share, laugh, cry, get angry, get motivated and break the cycle of having to hide their status because of the possible backlash,” she says. “I hope they come away feeling a sense of pride that they are living with HIV – not dying from it – and feeling a renewed sense of self.”

For PHAs, the conference will provide new insights about the illness.

“I’m looking forward to meeting people from other countries and finding out what they go through,” says one member of Access AIDS Network’s HIV-support group who asked to remain anonymous.

“I want to find easier ways to cope with this (illness) – mentally and physically,” says another.

Daviau hopes the conference will provide her clients with the tools they need to become better educators.

“To learn the latest research and to actively participate in an open forum without stigma or discrimination is fantastic,” she says. “It may even encourage our PHAs to take a more active role in education and prevention measures within our community. I hope this conference will give them the courage and motivation they need to get involved in their community.”

Vicki Kett, manager of community services at Access AIDS Network, estimates there are more than 350 people living with HIV in northeastern Ontario.

Kett says about 60 per cent of PHAs in the Sudbury region were infected through intravenous drug use and estimates that 13 per cent of injection drug users in the region are HIV-positive.

“We are behind Ottawa and we are behind Vancouver, but that’s about it,” Kett says. “We are ahead of Toronto in per capita infections and ahead of a lot of other cities. That’s probably because the drug of choice is cocaine.

In areas where the drug of choice is heroin, the rate of infection is not necessarily as high because the number of injections is far less in a day period.”

Kett says misinformation is a dangerous obstacle to effective prevention.

“It’s so easy to deny that small towns have drug problems,” Kett explains. “Everybody thinks drug problems are in big cities like Toronto or Vancouver. As long as we deny, it’s very hard to offer needed support to the addicted population (such as needle exchange programs).”

Kett stresses that living with HIV is a constant challenge. Side effects can include neuropathy, nausea and diarrhea, and dementia in people in their 30s and 40s. HIV-positive women face a particular challenge as they must decide whether to have children and must acknowledge that they may not live long enough to watch them grow up.

Kett says people often mistake new treatments for cures and overlook the life-long disruptions caused by the virus.

“We have no guarantees that the medications will continue to work in the long-run,” she explains. “There is no cure. There is no vaccine. People must constantly take medications – seven days a week, 365 days a year.”

The theme for this year’s conference, Time to Deliver, echoes Kett’s assertion that medication and education remain the most effective tools available.

Chosen to address the disparity that lingers between wealthy and poor nations, the theme stresses the need to raise awareness, promote accountability and ensure adequate treatment for all. AIDS 2006 is also an unprecedented opportunity to set global standards.

“The challenge at hand is to garner the resources and the collective will to translate (existing) knowledge and experience into broadly-available HIV-treatment and prevention programs,” states the conference’s website.

Maskwa is enthusiastic about the conference and hopes it will reduce the number of new HIV infections.

“I’m looking forward to being in Toronto and getting out,” he says. “It’ll be like a holiday, but no doubt it will be a life-changing experience. Any conference like that is.

The bonds you form with people are something you never forget. This is such an awesome thing to happen in North America. I’m really looking forward to it.”

Maskwa knows as well as anyone how savage HIV can be. He’s known many, too many, of the millions lost so far.