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I'm not dead yet! I've got cancer and am learning to cope – The Globe and Mail

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First Person is a daily personal piece submitted by readers. Have a story to tell? See our guidelines at tgam.ca/essayguide.

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Illustration by Drew Shannon

I have cancer. I’m going to die. Those are the first two lines in the journal my doctor told me to start. On a Saturday morning in September, I went for a run and later in the afternoon that same GP phoned me while I was buying my groceries and said, “You have metastatic Melanoma, Stage 4.″ What happened to Stages 1, 2 and 3, I wondered?

What is the first thing you think about after hearing that information? My husband is older, he’s supposed to die first, not me. And then, I haven’t cleaned up all those boxes in the basement yet! There’s a lot of junk down there that I don’t want the kids to have to go through. That’s probably not the first thing most people think about but it did cross my mind.

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Most people will get cancer if they live long enough. I’m in my 70s, that’s not long enough. So how does one navigate this new world, this new club you didn’t ask to join? The hard part is telling your family and friends. Once you get through that and a lot of tears, cancer is a fascinating experience, well, maybe not fascinating but intriguing. I am lucky in the fact that my cancer – melanoma – is not really painful. Unfortunately, it is one of the most deadly cancers.

But where did this melanoma come from? Ten years ago I had a mole removed, a huge chunk of my back taken out, lymph nodes were removed and saw a dermatologist often for follow-up appointments. I did that but still got metastatic melanoma. Growing up I loved to lie in the sun, I wore no sunscreen in those days. Now we know better.

I decided that I would share my treatment with those who wanted to know what was happening. Being a retired teacher, it seemed like the most educational and sensible thing to do. I sent out pictures of me receiving immunotherapy. This is a fairly new treatment for melanoma and encourages my immune system to attack the cancer cells. (I wonder where those cells go once they are attacked?) There were tumours on my back like golf balls and now they are gone. Yeah!

The first month before treatment I was subject to three different kinds of scans so doctors could find out where the cancer is located. Mine is in my lungs, thyroid, right femur, brain and who knows where else. Radiation was scheduled on the knee and the brain since immunotherapy doesn’t work so well in those areas. I wondered how it was possible to radiate the base of my skull. Technicians built a mask of my face, then clamped me onto a table. Even though I cannot move, I’m asked if I can turn slightly to the left. I think I looked left but nothing more, and the radiation device rotates around my head. After five treatments I got to take my mask home. I’m trying to see how I can use it for next Halloween.

Once others know you have cancer they want to come visit, wish you well, send positive thoughts, healing energy, offer prayers and make food (before you die). There should be a guide to follow when dealing with friends with cancer. My husband would sometimes act as a “gatekeeper” in the first few weeks in case I was tired. As it turns out I loved the company and well-wishers, especially since I was feeling really good.

The food delivery was the most interesting. Some of my teacher friends offered to provide me with a meal train. Unfortunately, they didn’t quite explain what was involved. I didn’t know when the food was arriving, and I usually already had dinner made. No problem. That meal became the next day’s dinner. A big hug to the wonderful friend who brought the dinner she was already making herself and dropped it off right at dinner time.

So here I am into the third month of treatment and I am feeling no side effects (only a rash), I am walking daily, cooking meals and even vacuuming. I haven’t yet emptied any of those boxes in the basement but it is on my list. The oncologist says things are going well. The care at the Cancer Clinic has been excellent and the warm blankets are the best.

I think about MAID, Medical Assistance in Dying. This is a biggie. I felt it was something I should do before I wasn’t able to make the decision. Remember cancer is in my brain. I talked with my doctor and the form is filled out. I am dying but maybe not quite yet. There’s no deadline to use MAID. It is there if I need it.

When I checked with Dr. Google, I learned a patient with Stage 4 melanoma can live at least five years. I just renewed my passport and went for the 10-year option. You never know …

Mary Gidney lives in Victoria.

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Texas Agriculture Chief Says Bird Flu Concerns Are ‘Overhyped’

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Concerns about avian influenza cases among dairy cows in Texas have been “a little bit overhyped” as its spread can be contained, according to the state’s top agriculture official.

Texas hasn’t seen any further infections in almost three weeks, and new transmissions from migrating waterfowl are unlikely as birds have headed north, according to Texas Agriculture Commissioner Sid Miller. What’s more, contagion through contaminated milk can be easily avoided by disinfecting equipment used in barns, he added.

“We’re over the hump,” Miller said in an interview Thursday. “We can take measures to stop that.”

Read More: Bird Flu Spooks Meat, Milk Traders as Virus Hits Dairy Cows

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The infection of cows by the same virus strain that emerged in Europe in 2020 — and has since caused an unprecedented number of deaths in wild birds and poultry globally — has raised concerns that the outbreak may hurt demand for dairy and beef and disrupt supplies.

Miller said only 10% of milking cows in the state have been infected by bird flu, and that little milk has been thrown away so there is not a shortage of the staple. While no infected dairy has entered the food chain, consumption of pasteurized milk as well as cooked eggs is safe.

“If you’re worried about it, cook your eggs and make sure you get your milk pasteurized,” Miller said.

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HHS cancer patient launching “Your Match Matters” to find young stem cell donors

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HHS cancer patient Peter Clarke (left) is launching a Your Match Matters campaign to encourage people ages 17 to 35 from diverse backgrounds to become stem cell donors. The avid cyclist is pictured here with his son Hayden.

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After being diagnosed with a rare type of bone marrow cancer two years ago, Dundas resident Peter Clarke was inspired to create Your Match Matters, a non-profit organization that encourages people ages 17 to 35 from diverse backgrounds to join the Canadian Blood Services Stem Cell Registry. Donors in that age range give patients undergoing a stem cell transplant the best chance of long-term survival, and many people worldwide have difficulty finding a match due to a lack of diversity in stem cell registries.

“Canada has a great opportunity to expand the number of donors from diverse backgrounds.” — Dr. Tobias Berg, HHS hematologist

Stem cell donations can treat over 80 diseases and disorders, including leukemia, lymphoma and other blood cancers. The Your Match Matters website provides a link to Canada’s stem cell registry, where volunteer donors are matched with patients nationally and around the world who need a transplant.

Dr. Tobias Berg, HHS hematologist

Dr. Tobias Berg, HHS hematologist

“It’s a common belief that the best match always comes from a close blood relative, such as a sibling, but most patients don’t have matched family donors,” says Dr. Tobias Berg, a hematologist at Hamilton Health Sciences’ Juravinski Hospital and Cancer Centre (JHCC).

“A young matched unrelated donor can in some instances be an even better choice than an older related donor, so it’s extremely important to recruit young donors from diverse backgrounds.”

Leading centre

The JHCC is one of just three centres in the province to provide all forms of stem cell transplants to adult cancer patients. In 2020, the hematology service expanded with the opening of the Ron and Nancy Clark Stem Cell Transplantation and Cellular Therapies Unit for patients needing treatment for blood cancers.

Peter Clarke, HHS patient and stem cell donation advocate

Though Clarke, 59, will eventually need a transplant, he wasn’t motivated to launch Your Match Matters because of a personal search for a donor. “Four potential matches have already been found for me,” says the retired environmental consultant. Instead, he hopes to help unmatched patients in Canada and around the world find a donor.

Right now in Canada, nearly 1,000 people need a stem cell transplant.

“I was hearing stories of families frantically looking for matches for their family members,” says Clarke. “I couldn’t imagine the panic and helplessness they felt, and wanted to help change the odds.”

Your Match Matters launch party

Your Match Matters officially launches on April 19 at 7 p.m. with an in-person event at Millworks Creative in Dundas. The evening includes guest speakers and a video featuring Clarke’s story, as well as a video presentation by Berg. The public is encouraged to attend to learn more about becoming a donor, and Clarke is especially interested in attracting a 17-to-35-year-old crowd from diverse backgrounds.

Registering to donate is easy and painless

Clarke also plans to attend community events to promote stem cell donations to that target age group. An avid cyclist, he tested the promotional waters last fall with an information table at a gravel bike race in Haliburton, where many participants were in the target age range. Sixteen riders joined the registry that day, while visiting Clarke’s information table.

Avid cyclists Peter Clarke and his son Hayden plan to promote stem cell donation at in-person events.

“It wasn’t a large number, but it’s 16 more donors than previously existed on the registry,” says Clarke. “The more people that join, the better chance a person needing a stem cell transplant has of finding a match.”

He’ll be at the Mississauga Dragon Boat Festival on June 9 and the 24 Hours  Summer Solstice on June 22-23 at Albion Hills Conservation Park in Caledon.

The Canadian registry is part of an international network of registries including more than 80 participating countries, with over 40 million donors from around the world.

Once a person registers to become a donor through the Canadian registry’s website, they’ll receive a free swab kit delivered to their address in one to three weeks.

The donor collects a sample by gently swabbing the insides of their cheeks, and mailing the sample to the registry free of charge. It can take months or years to find a match, so donors are asked to keep their health and contact information up to date.

Building a diverse donor base 

The Canadian registry is part of an international network of registries including more than 80 participating countries, with over 40 million donors from around the world. It coordinates searches in Canada and with other international registries to help patients get the stem cells they need. Yet in spite of its size and scope, a match for a patient in Canada can only be found about 50 per cent of the time. Right now in Canada, nearly 1,000 people need a stem cell transplant.

“Canada has a great opportunity to expand the number of donors from diverse backgrounds,” says Berg. “Few countries in the world have as much genetic diversity as Canada, with people moving here from different cultural and regional backgrounds worldwide.”

A second cancer diagnosis

Clarke was diagnosed with two separate cancers within a few months of each other. The first diagnosis, in December 2021, was for kidney cancer.

“On January 25, 2022, most of my left kidney was removed,” says Clarke, who four months later was diagnosed with myelofibrosis – a second, separate cancer. Clarke was on his way to the Toronto airport for a cycling holiday on the Spanish island of Mallorca when he received a phone call with test results confirming the myelofibrosis diagnosis. “It was a visceral earthquake in my life,” says Clarke. “I was shaking. I couldn’t hold onto my suitcase or my keys.”

Clarke continued with his trip despite being completely rocked by the news, and upon returning, he met with Berg, his hematologist, for the first time and learned that a stem cell transplant could offer a potential cure.

For many diseases where a stem cell transplant is recommended, there’s a 50 to 60 percent of being cured, says Berg, adding that with some diseases, it’s as high as 80 to 90 percent.

Though four good matches were identified for Clarke, he won’t move forward with the transplant until his health begins to decline.

“For this condition, the need for a transplant depends on the progression of the disease and ability of the bone marrow to generate enough blood cells,” says Berg.

Transplants involve several days of chemotherapy leading up to the procedure, followed by months of recovery. “Right now I feel fine,” says Clarke, who is heading back to Mallorca later this month for another cycling trip. “I’m taking life one day at a time until I get to the point where I need the transplant. And I’m using this stretch of good health to launch Your Match Matters, and recruit new donors.”

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Snoozing science seeks to find out how therapy boosts sleep in breast cancer survivors – CBC.ca

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Dr. Sheila Garland is running a study on how cognitive behavioural therapy for insomnia impacts sleep for breast cancer survivors. (Submitted by Dr. Sheila Garland)

A new study at Memorial University is looking into the connection between breast cancer survivors and insomnia by measuring brain waves during sleep.

Dr. Sheila Garland, associate professor of psychology and oncology and a registered clinical psychologist at Memorial University, is collecting data that demonstrates how cognitive behavioural therapy for insomnia (CBT-I) improves sleep.

As opposed to using drugs to treat insomnia, CBT-I targets the thoughts, behaviours and emotions that can make it hard for people to sleep.

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“We will be able to learn more about how this treatment actually changes the sleeping brain,” Garland told CBC News.

The study uses cerebra, a device worn on the face that measures brain waves. Garland said the device means people can be in their beds as opposed to having to come into a lab to take the readings.

Breast cancer patients can experience insomnia for a number of reasons, she said, in part due to the fact most people who are diagnosed are also experiencing mid-life hormonal changes, as well as the impact that stress and cancer treatment can have on sleep.

Garland is looking to recruit a total of 24 women who live in the St. John’s area and who have completed breast cancer treatment to register for the study.

Woman with brown hair wearing electrodes over her face.
Masters student Emily White demonstrates how the cerebra device is worn. (Elizabeth Whitten/CBC)

Potential participants answer a questionnaire, which contains questions about their moods, sleep, cognition and fatigue. From there, successful applicants undergo performance tests for memory, concentration and emotional functions.

Then they are given a cerebra to take home and wear overnight, which is returned the next day, said Garland.

That’s followed by seven cognitive behavioural therapy sessions over several weeks, and then participants wear the cerebra for another night to see if there were any changes in sleep.

Sleep boosted

Dana Warren, a breast cancer survivor who had insomnia, heard about the study over social media and registered. 

Living with insomnia impacted her quality of life, she said, and she found herself cancelling plans and frequently worried if she’d be able to sleep.

“It’s kind of this negative cloud that shows up and, you know, takes away quite a lot of things that help us feel connected, and healthy and engaged and that’s the kind of stuff you need to get back to yourself,” said Warren.

Woman in glasses and hair up.
Dana Warren says prior to taking part in the study she had trouble sleeping. (Submitted by Dana Warren)

However, since participating in weeks of therapy through Garland’s study, she said she’s experienced a marked improvement over her ability to sleep, calling it a “game changer.”

“I am not waking up in the night five or six times anymore. I’m not staying awake for two hours anymore,” Warren said. “If I wake up, I fall back to sleep.”

Before the study, Warren would begin to wind down her day at 9:30 p.m., which she thought was a good sleep habit. Now, she said, she can go to bed at 11 p.m. and wake up at 6 a.m.

Her quality of sleep has drastically improved, she said, and now she has the energy to go out at night.

Building on existing research

There is existing research on how sleep improves after CBT-I, but Garland is hoping to expand on that to understand why and how it works, which will also add to subjective self-reporting accounts from women on how the therapy improves their sleep.

“I want to understand how is it that this treatment actually deepens your sleep and that increased sleep depth is related to better memory functioning, better attention, better emotional processing,” said Garland.

“So I want to get at the mechanisms of how it works. So we know it works, but we don’t know how. And that’s why I think that the only way that we’re going to get that is really by, you know, sort of looking at the sleeping brain.”

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