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Carolyn enjoys a much-needed vacation in Varadero, Cuba, in the winter of 2014. (Photo: Carolyn Van)​

In February 2014, 29-year-old Carolyn Van couldn't wait to jet off for a much-needed vacation in Varadero, Cuba. Sandy beaches, sunny skies and tasty cocktails – life couldn't be better.

Yet something felt off.

Carolyn, a savvy and highly sought after consultant, marketer, professor at Humber College and former technology expert on CTV News, began experiencing a persistent dry cough. Between 70-hour work weeks, training and performing with a dance group, adopting a dog and planning social gatherings with friends, she attributed the cough to stress – that is until it rapidly progressed into gasping for air.

"I remember going for my chest x-ray and immediately sensing a weird vibe from the technician – she kept asking me if I was a smoker and then called me back to do a second x-ray as I was changing out of my robe and in to my clothes," says Carolyn.

"The next day when I got into work I had six missed calls from my doctor's office."

The chest x-ray results showed Carolyn had a 10x10 centimetre mass touching her heart and lungs. On March 19, 2014, Carolyn was diagnosed with lymphoma, a form of cancer that affects the immune system.

The day after her diagnosis, Carolyn met her oncologist for the first time at the Princess Margaret Cancer Centre, Dr. Michael Crump. He walked her through the treatment plan, side effects and then advised her to begin chemotherapy immediately – six cycles every 21 days, followed by four weeks of daily radiation therapy.

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March 30 to April 3 is Adolescent and Young Adult (AYA) Cancer Awareness Week, dedicated to increasing awareness about AYA-specific care for patients like Carolyn, ages 39 and under. (Photo: Carolyn Van)

Cancer in your 20s

Adolescent and Young Adult (AYA) Cancer Awareness Week is from March 30 to April 3, 2015. The Adolescent and Young Adult (AYA) Oncology program at Princess Margaret Cancer Centre provides personalized, supportive, non-medical care for patients 39 and under.

​Young adult patients often have different needs and concerns than older patients. Their needs may be related to fertility preservation and risks, sexuality and sexual health, school and work transitions, social relationships, nutrition, and exercise.

"A cancer diagnosis is a devastating interruption in a young person's life," says Laura Mitchell, Clinical Nurse Specialist, AYA Oncology Program.​

"They are often going through key milestones such as beginning their careers, pursuing academic goals or planning to start their families."

As a young adult with cancer and ambitious career woman in her 20s, Carolyn was not only coping with the physical symptoms of cancer, but the emotional and mental side as well.

"While there are a lot of patient resources out there, they don't always speak to the lifestyle of a 20-something – how to cope with the shift in your relationships, infertility and how to handle social and professional situations," says Carolyn.

After filling out a Distress Assessment and Response Tool (DART), a short, self-assessment measuring a patient's physical symptoms and psychosocial needs, Dr. Crump identified Carolyn's need for additional emotional support and contacted Laura to help.

"One of the reasons cancer is so difficult for young people is because you're at a point in your life when you're still growing and evolving, and trying to figure out who you are. A time when you are determining what your core values are" says Carolyn.

"That's why it's so refreshing to talk to Laura. It feels more casual than clinical. I've asked her anything from my birth control, to professional advice, and relationship-based questions."


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Carolyn rings a bravery bell at the 'No Good Woman Left Behind' fundraiser on July 30, 2014. (Photo: Carolyn Van)

Let the chemo bell ring

On July 30, after completing her chemotherapy, Carolyn's dance group, Army of Sass, organized a fundraiser​ at The Virgin Mobile Mod Club and with the help of friends, family, colleagues and strangers raised close to 18,000 dollars. At the end of the event, Carolyn rang the chemotherapy bell to signal the end of a challenging chapter in her cancer journey.


Carolyn receives good news: The end of chemotherapy! She celebrates by spending time with friends at the cottage. Watch the video. (Video: Carolyn Van)

Unfortunately, it was short-lived.

On Aug. 9, she experienced a major setback. She learned the high-dose chemotherapy had not worked as she had hoped and she would need a stem cell transplant.

"I felt embarrassed," says Carolyn. "Here I had made a big deal out of ringing the chemo bell, felt a huge weight lifted off my shoulders, only to be told it was all for nothing. It was completely devastating."

"I felt defeated. I felt like my body had let me down and that this cancer had taken the celebration away from me," says Carolyn.

 
"​Stem cell transplant. It's happening, it's sinking in and I'm terrified," – Carolyn breaks down in tears after finding out the next step in her cancer journey. (Video: Carolyn Van)
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On her birthday, Carolyn was admitted once again to the Princess Margaret to undergo a stem cell transplant – also called a blood or marrow transplant – to infuse healthy stem cells into her body to fight the disease.

On Nov. 10, Carolyn was discharged from the hospital, but this time, she would return to her own apartment in Liberty Village, Toronto, instead of to her parents' house. One month later, she began radiation therapy, which was completed on Jan. 13, 2015.

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Carolyn is learning to rebuild her life after cancer, finding her 'new' normal. Here, she walks her dog, Leia, in High Park, Toronto. (Photo: Carolyn Van)

Life after cancer: Now what?

Cancer doesn't end after diagnosis – learning to rebuild your life after cancer can be equally distressing and complex. Many survivors fear recurrence and ongoing side effects, and have difficulty readjusting after their lives have been turned upside down.

"We recognize that the end of cancer treatment can be a very challenging time for young patients because their lives are often different after cancer," says Laura.

"The AYA Program supports young patients around setting realistic goals and helping them successfully transition back to normal life."

Carolyn has had to learn to manage her expectations and redefine her 'new' normal.

"Recently, I've asked myself 'at what point will I feel set free from all of this?' The immediate answer is 'when I'm cancer-free'," says Carolyn.

"But what I'm learning is that hearing 'Carolyn, you're cancer-free' may not be for a while. I am still living with cancer right now – and if being 'cancer-free' is when I finally feel free from all of this – I could be holding my breath for a very long time. And I'm exhausted."

Carolyn's advice is to celebrate the small wins: no longer having to be in the hospital every day; having the strength to take a shower without any assistance. Losing her independence was one of the most difficult parts of her cancer journey, and so regaining a little bit back every day feels like winning the lottery.

"As human beings, we feel much more comfortable acknowledging and talking about everything physical because we can see it, touch it, feel it," says Carolyn.

"When it comes to people's emotional and mental well-being, not everyone is comfortable with going there: both those whom are experiencing them and those in their support system. The AYA Program helps you navigate these feelings and reassures you that what you're feeling is normal – and I wouldn't be where I am today if I didn't have that support."

To read more about Carolyn's experience, click here to check out her blog.

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