Survivor Stories

Survivor Stories

 

It was only an itchy spot on his upper left arm, but it bothered Sharon’s son, Mark, enough that he went to get it checked out. The doctor removed the spot on his arm and said it was nothing to worry about and so the biopsy was never sent to pathology for review. Then the itchy spot grew back. Mark wasn’t worried about its return – as his doctor still assured him it was nothing – but this time Mark insisted it be sent to pathology for testing. In October of 2006, at the age of 22, Mark had just bought a home, was in love and expecting his first child, and his career was on the right path. Mark had planned a vacation to Cuba with his partner Connie, who was five months pregnant at the time. The evening before they were set to leave, they got the call from his doctor to discuss his pathology results: he had malignant melanoma.

To honour Mark’s memory, and with the hope of helping others struggling with melanoma, Sharon speaks candidly with us today. Sharon’s story is one of love and strength in family, and the caution to get a second opinion when something about your health is bothering you.

marble mourning

Tell us the story of Mark’s diagnosis

At 22 you are invincible, and if your doctor says not to worry then you don’t. The doctor told him it was nothing; she had seen many like this before and he shouldn’t be worried.

Mark and Connie had never even heard of melanoma. The doctor told them to take their vacation and she would have specialist appointments set up for their return. Mark’s diagnosis affected everyone’s life drastically. Everything happened quickly: CT scans, MRIs, blood work, dermatologist appointments, surgery to remove the lesion, sentinel lymph node biopsy and surgery to remove all auxiliary lymph nodes (December of 2006). Then one month of high dose interferon and seven months of low dose – this involved traveling to Princess Margaret, Toronto General, Stouffville Hospital. Myself, Connie, her family or mine took Mark to these appointments. I took a leave from work to help out and my husband worked shift work so he did many of the appointments with us.

On Mark’s last day of high dose interferon, Connie went into labour while sitting with Mark at the hospital. We drove from one hospital to the next where the next morning she delivered a healthy baby boy who they named Mark Jr. The low dose interferon that Mark had to begin made him very sick and a newborn baby at home to attend to was so stressful for everyone. He stuck at the interferon until September. At that time scans were repeated and restaging was done. Mark felt well and there appeared to be no more melanoma. In September of 2007, with those positive results, Mark and Connie along with Mark Jr. had the wedding they had waited for.

Skip ahead to August 2009, Mark had been having nausea, vomiting, fatigue for a couple of months so he returned to Princess Margaret to see his doctor who did a complete restaging. Now he is stage 4 with the melanoma having spread to his lungs, liver, bones, kidney, heart, skull, jaw – basically everywhere except the brain. His prognosis was not good and he was told he may have only months left to live. Baby number two was due in three months. Chemo, ongoing radiation, test after test, clinical trials, surgery, nonstop appointments. Travel back and forth to New York for a clinical trial. Now the family is facing the heartbreak that Mark may die soon. It was the hardest battle I think we as a family will ever have to fight.

“You need to be responsible and listen to your body. When something doesn’t look right or feel right, then it probably isn’t.”

sadness

What advice can you give (young people and/or parents, families, etc.) about finding peace and honouring our loved ones in difficult times? 

My advice to young people, families and parents about finding inner strength to stay positive through difficult situations is complicated. Everyone handles stress differently. I could be strong and positive when I had to be for Mark but I would be sick with pain when by myself. I found my friends were there to support me and I kept myself educated with melanoma through Annette [Cyr, founder of Melanoma Network of Canada] and forums with lots of information. I guess I always thought that Mark was going to be ok. Somehow we could beat this. One thing is that we always tried to talk honestly.

What would you like young readers to understand most about melanoma?

I would like young people to understand that melanoma is not just skin cancer. It can eat away at your entire body and cause excruciating pain and kill you. You need to be responsible and listen to your body. When something doesn’t look right or feel right, then it probably isn’t. Have it checked and always follow up. If you’re not happy with the diagnosis, then get another opinion. A second opinion may have saved Mark’s life.

 

Caroline’s Story

Caroline loves the outdoors and built her career there, leading backcountry tours and leadership programs. This enthusiasm for adventure brought her from Toronto to Hong Kong in February of 2013 for a job opportunity. A few months later, her life was about to change again.

caroline cooper - kick boxing

At the age of 27, she found a lump on the side of her neck and got it checked out. Alone, in a foreign country, Caroline was told that she had melanoma. Ten months since her diagnosis, despite major life changes, Caroline continues to be the positive, strong individual she always was – inspiring others to keep smiling. She has even started a blog, documenting her battle in hopes that her story will help the journeys of others with, or affected by, cancer.

Below is our interview with this incredible individual who demonstrates just how thinking positively and being honest with yourself changes not only your own life, but also the lives around you.

 caroline cooper - toque

Tell us the story of your diagnosis.

My brain is in overdrive, and the room starts to spin. I can feel the blood rushing to the surface of my skin. I’m thinking, “I don’t know anything about cancer. I’m too young to have cancer. I didn’t do anything wrong. What do I do now?” I leave the office after crying in their small break room for about an hour. I don’t want to make the 90-minute trip back to where I live. So I look for a hotel to stay at. I’m in the middle of downtown Hong Kong; hotels and people are everywhere. I end up sitting on the street curb in front of a bus stop crying, asking the world to slow down so I can get a grip on what just happened.

The next day my parents fly to Hong Kong. The wonderful surgeon has arranged a series of tests and scans for me to do in Hong Kong. Just as I’m picking my folks up from the airport, I get a call from the doctor. It’s melanoma. “That’s good right?” I say. I’m foolish and think skin cancer is something you can just cut out and move on from. So my official diagnosis at this point is metastasized malignant amelanomic cancer. But they can’t find the primary. All these words are foreign to me. Google became my best friend, but I now know it can also be your worst enemy.

Turns out, I had the primary removed four years ago. There was a mole on my back that my t-shirt tags itched. So I had it removed. The tests came back clear from the sample. But now we realize it was a missed diagnosis. Now that we know what type of cancer it is, we can locate the best hospital for me to get treatment. Lucky for me, it’s Princess Margaret Hospital in Toronto. After a week of tests and scans, we fly home.

 

“The sun is powerful, and our best defense is education and prevention.”

 

How did the battle change your life?

Gosh, it’s been 10 months now since my diagnosis, and I’m just getting over the denial stage. I have finally come to terms with the fact that I will be dealing with this for the rest of my life. Everything has changed. Occupationally and physically, the outdoors was my life. I have been working outdoors and guiding backcountry trips for the last 11 years. My university degree specialized in Outdoor Adventure Leadership. My entire life has to change now. I can’t go outside and enjoy it like I did before. I’m not one to work out in a gym. I always got my exercise from canoe tripping and rock climbing.

caroline cooper - fishing

Since my diagnosis I feel like I’ve become a big bum. I’m still healing from the surgery and radiation treatments but, even then, I can’t spend as many hours outside like I could before. And I was never lazy with applying sunscreen. My parents drilled sun safety into my routine at a young age.

Spiritually and mentally, I am still in the early stages of adjusting. My relationship with my family – we have never been more honest and transparent with each other. This whole experience has been one long educational journey. My diet has changed a great deal. And I am more aware of my body and its limitations. But I am mourning a life and body without cancer.

What would you like young people to understand about melanoma?

Melanoma is a disease that shows up right there on your skin. Know your body, and if you are questioning something, get it checked out. And then get a second opinion. The sun is powerful, and our best defense is education and prevention. It’s a cellular mutation in your body, and it happens at a molecular level. All it takes is one time out in the sun for your skin to say, “I don’t like this,” and change. One time.

Transparently speaking, melanoma f***ing sucks. It spreads really fast and attacks vital organs just like any other cancer. It’s not “just skin cancer.” Even though I’m the one with the diagnosis, melanoma has affected everyone in my life. My story is part of their story.

What advice can you give young people about finding inner strength and positivity in difficult times?

Speak your truth. It’s okay to be scared, it means you’re human. Don’t feel bad for having good days.

In the middle of my 33 radiation treatments, I had a young gentleman approach me one morning at the hospital. He said, “You always come in with a smile on your face and you talk to the people around you. You inspire me. Keep it up, because you never know who is watching and who may need that extra boost of positive hope.”

It’s contagious. Find that thing that motivates you, and hold on to it. You’re not alone in this. Don’t rush getting back to “normal.” Listen to your body. It’s a process. And sometimes, a good cry is helpful. But I find a good laugh is even better. And then there are the times you laugh so hard you cry – those are the best!

 

Violetta’s story

Violetta started tanning at a salon when she was 16 to improve her appearance – this began to feed a fixation on her skin tone. She made trips to the salon and avoiding sunscreen a regular practice. Nine years later, after her mother urged her to get a mole on her back checked out, she was diagnosed with melanoma.

“When you are young you can feel invincible to anything but peer pressure. That beachy, sun-kissed glow might be a tanning bed away, but melanoma prevention must start early; your risk of developing it drastically increases with sunburn and exposure to UV rays before the age of 20. In fact, melanoma is one of the most common forms of cancer for young adults ages 15 to 29.”

tanning bed

Below is our interview with the incredibly strong and brave Violetta. Here she shares her story of her surprise battle with skin cancer, and the drastic way it affected her life and appearance. Her message to readers is one of prevention: to stop chasing a tan, and instead find a healthy confidence and beauty in your own skin.

Tell us the story of your diagnosis

I started tanning when I was 16. I always thought that tanning beds were safe because it was in a controlled setting. I used to tan because I thought tanned skin looked good. After a certain point tanning became addicting. My friends said that I was “tanorexic” but in my eyes I could never be dark enough. One day my mom mentioned that one of the moles on my back looked strange. I kept putting off going to the doctor to have it checked because I was a busy student. It wasn’t until my mom started to bug me more and more that I finally went to see a family doctor to get a referral to the dermatologist. The dermatologist removed my mole. A week later I found out I had melanoma. I was only 25.

Melanoma

“When I was in high school I was an outcast and wanted to fit in. Many girls in my school had nice sun-kissed looking skin and I was pale like Edward in the Twilight movies, so I let peer pressure sway me… all I can say is be your own person.”

In what ways did the diagnosis change your life, if at all?

My diagnosis changed many things in my life. I’m in a state of constant worry. Is the cancer going to come back again? It’s come back before. Will I live to see my next birthday? After melanoma spread to my brain, I had to have radiation to kill any microscopic cancer cells that could be left. Five months after my radiation treatment, I started to have seizures and I was diagnosed with epilepsy. I have to take medication for the rest of my life now. I couldn’t drive for a long period of time because my seizures were uncontrolled. My hair started to fall out because of the side effects of the seizure medication.

Superficial spreading melanoma

Superficial spreading melanoma

What would you like young people to understand about melanoma?

I want them to know that skin cancer is completely preventable. It’s as simple as wearing sunscreen and staying away from tanning beds. I didn’t wear sunscreen. I travelled for three months in Europe and never once used sunscreen and I used tanning beds from the age of 16 to 21. I don’t have a family history of skin cancer and I’m positive that tanning beds and not wearing sunscreen gave me melanoma. Using tanning beds gave me premature wrinkles. My face gets age spots and I have uneven skin tone, not to mention the scars on my body from the mole removals and surgery.

What advice can you give (young people and/or parents, families, etc.) about finding inner strength and trying to remain positive in difficult times?

To the young individuals I would say don’t succumb to peer pressure. When I was in high school I was an outcast and wanted to fit in. Many girls in my school had nice sun-kissed looking skin and I was pale like Edward in the Twilight movies, so I let peer pressure sway me. Youth in high school have so many issues to worry about – all I can say is be your own person. To the parents whose children and family members were affected by skin cancer I would say reach out to other families and individuals who are going through the same thing to get support. It helped me a great deal.

 

Jessica’s story

Seven days before Christmas, Jessica was tested and had to wait for the results of her sentinel node biopsy. In the New Year, she learned her melanoma had spread into her lymph nodes. At barely 30 years old, and with a family, Jessica was faced with the future of an invasive surgery, along with excruciating drug therapy. But Jessica is an incredible individual, who has learned to think of her cancer as a gift in many ways, teaching her things about herself – and loving – that she never realized or thought possible. She has also adopted a passion for medical care and has changed her career path to one of giving back to the community that helped her with her difficult, and ongoing, journey with melanoma.

This is a story about positive thinking, acceptance and learning to appreciate the many dimensions of love in our lives.

Tell us the story of your diagnosis.

Exactly one month before my 30th birthday I saw my family doctor about a mole that had been on my right temple for as long as I can remember. It had always been normal but at some point over that year a black patch had grown on the back of it and it had gotten larger, becoming itchy and occasionally bleeding. When my doctor offered to remove it in her office, immediately I knew in my heart that it was melanoma. My phone rang eight days later confirming it, and I was referred to a surgeon and an oncologist. I had surgery seven days before Christmas and began the excruciating wait for the results of my sentinel node biopsy.

diagnosis

On January 10th, I was told that it had moved into the lymph nodes and that I was now in for another far more difficult and invasive surgery along with drug treatment. Metastasis was also a possibility, so I did CT scans and an MRI. I had all the nodes in the right side of my neck removed along with most of my parotid gland. When the surgeon called to tell me the nodes were all clear I felt incredibly relieved, but knew I still had a long road ahead. For a stage 3 patient, treatment options are limited; Interferon, watch and wait, or, if you’re lucky, a clinical trial. There was a trial that I wanted to participate in, but my scans came back with other abnormalities (non-cancerous) so that option was taken away. I wasn’t comfortable with doing nothing, so I geared up for a full year of medication that many people describe as being so awful that they don’t last longer than the first month. As it turns out, I am one of the lucky ones who had manageable side effects. It wasn’t the best year of my life but my hope is that I am trading it for many more years to watch my girls grow up and to share the little moments in life with those I love.

“I’ve taken to asking myself ‘Will this matter in a year from now?’ If the answer is no, then I love on.”

In what ways did the diagnosis change your life, if at all?

Where do I begin? Melanoma has given me so much more than I ever could have imagined. While it is a terrible disease that I hate beyond words, I am thankful in many ways for the gifts it has given me too. I have learned to appreciate the little things and the daily struggles that can seem so big but really aren’t in the grand scheme of things. I’ve taken to asking myself “Will this matter in a year from now?” If the answer is no, then I love on. The people in your life are what matter and making time for them has become so much more important. I never could have known the way people would step up (or back) before this. My diagnosis also changed my career path; I have discovered a passion and gift for healthcare that I never knew I had. I want to be a nurse, but the path is long. Instead I returned to school for medical administration and will hopefully take part-time classes to work towards a nursing degree. I want to share the same type of amazing healthcare experience I have had with others.

Allergy lab becomes Center of Excellence

What would you like young people to understand about melanoma?

I want people to understand that melanoma isn’t as simple as something that grows on your skin, you cut off and move on. I think so many people have no idea what melanoma is, what causes it and how aggressive it can be. I firmly believe that knowledge is power and our young people need to be given more direct information on why they should be sun safe and how to do it. I also want youth to understand that the choices they are making now do have long-term consequences; that the tan they think looks so pretty now could come back and kill them when they are 30. If you wouldn’t smoke because it can cause lung cancer, why tan when it can cause melanoma? Melanoma is becoming so much more prevalent and the sad part is that it’s preventable in many ways.

What advice can you give (young people and/or parents, families etc.) about finding inner strength and trying to remain positive in difficult times?

What people need to know is that inner strength doesn’t mean you don’t have weak moments; it’s having those moments where you are sad, angry, frustrated, scared, or devastated and using them to make you fight harder and move forward. Cancer is uncontrollable, you can’t force it to stop growing but you can control how you approach it. Being positive and finding the good things in each day are what keep you going. Inner strength is an incredibly special thing; it’s there in all of us but you don’t know it until you need it. To be able to sit down and know in your heart that you can face whatever may come at you is difficult and seems unimaginable, but when it comes down to it that strength is what makes you a survivor.

For support people, let your loved one go through the process. Every single person handles their diagnosis differently, and that’s okay. They might talk about it or they might not. They might be a mess or they might seem like they aren’t even fazed. Listen, love and care unconditionally; that support is the most special gift a cancer patient can get.

 

Mark’s story

It was only an itchy spot on his upper left arm, but it bothered Sharon’s son, Mark, enough that he went to get it checked out. The doctor removed the spot on his arm and said it was nothing to worry about and so the biopsy was never sent to pathology for review. Then the itchy spot grew back. Mark wasn’t worried about its return – as his doctor still assured him it was nothing – but this time Mark insisted it be sent to pathology for testing. In October of 2006, at the age of 22, Mark had just bought a home, was in love and expecting his first child, and his career was on the right path. Mark had planned a vacation to Cuba with his partner Connie, who was five months pregnant at the time. The evening before they were set to leave, they got the call from his doctor to discuss his pathology results: he had malignant melanoma.

To honour Mark’s memory, and with the hope of helping others struggling with melanoma, Sharon speaks candidly with us today. Sharon’s story is one of love and strength in family, and the caution to get a second opinion when something about your health is bothering you.

marble mourning

Tell us the story of Mark’s diagnosis

At 22 you are invincible, and if your doctor says not to worry then you don’t. The doctor told him it was nothing; she had seen many like this before and he shouldn’t be worried.

Mark and Connie had never even heard of melanoma. The doctor told them to take their vacation and she would have specialist appointments set up for their return. Mark’s diagnosis affected everyone’s life drastically. Everything happened quickly: CT scans, MRIs, blood work, dermatologist appointments, surgery to remove the lesion, sentinel lymph node biopsy and surgery to remove all auxiliary lymph nodes (December of 2006). Then one month of high dose interferon and seven months of low dose – this involved traveling to Princess Margaret, Toronto General, Stouffville Hospital. Myself, Connie, her family or mine took Mark to these appointments. I took a leave from work to help out and my husband worked shift work so he did many of the appointments with us.

On Mark’s last day of high dose interferon, Connie went into labour while sitting with Mark at the hospital. We drove from one hospital to the next where the next morning she delivered a healthy baby boy who they named Mark Jr. The low dose interferon that Mark had to begin made him very sick and a newborn baby at home to attend to was so stressful for everyone. He stuck at the interferon until September. At that time scans were repeated and restaging was done. Mark felt well and there appeared to be no more melanoma. In September of 2007, with those positive results, Mark and Connie along with Mark Jr. had the wedding they had waited for.

Skip ahead to August 2009, Mark had been having nausea, vomiting, fatigue for a couple of months so he returned to Princess Margaret to see his doctor who did a complete restaging. Now he is stage 4 with the melanoma having spread to his lungs, liver, bones, kidney, heart, skull, jaw – basically everywhere except the brain. His prognosis was not good and he was told he may have only months left to live. Baby number two was due in three months. Chemo, ongoing radiation, test after test, clinical trials, surgery, nonstop appointments. Travel back and forth to New York for a clinical trial. Now the family is facing the heartbreak that Mark may die soon. It was the hardest battle I think we as a family will ever have to fight.

“You need to be responsible and listen to your body. When something doesn’t look right or feel right, then it probably isn’t.”

sadness

What advice can you give (young people and/or parents, families, etc.) about finding peace and honouring our loved ones in difficult times? 

My advice to young people, families and parents about finding inner strength to stay positive through difficult situations is complicated. Everyone handles stress differently. I could be strong and positive when I had to be for Mark but I would be sick with pain when by myself. I found my friends were there to support me and I kept myself educated with melanoma through Annette [Cyr, founder of Melanoma Network of Canada] and forums with lots of information. I guess I always thought that Mark was going to be ok. Somehow we could beat this. One thing is that we always tried to talk honestly.

What would you like young readers to understand most about melanoma?

I would like young people to understand that melanoma is not just skin cancer. It can eat away at your entire body and cause excruciating pain and kill you. You need to be responsible and listen to your body. When something doesn’t look right or feel right, then it probably isn’t. Have it checked and always follow up. If you’re not happy with the diagnosis, then get another opinion. A second opinion may have saved Mark’s life.