About Erin’s relapse:
After a year of chemo, in August of 2001 I was declared to be in remission. In November of 2001, after 3 months of post-chemo remission, I was scheduled for the usual 3-month check-up. Part of this check-up included some routine bone scans and CT scans and x-rays. I felt great, my doctors expected nothing and all test results came back fine – except the CT scan of my lungs. The cancer had relapsed in my left lung. Though we were all surprised, this is actually quite common in OS patients. I had a lobectomy (removing part or the entire affected lobe in the lung), followed by another 7 months of chemo. I was discouraged, but felt the only choice was to press on. As I told you before, this chemo was much easier on me, which helped a lot! I also started using an inhaled drug called GM-CSF that was still in experimental stages when I used it. After finishing chemo in June of 2002, I started this stuff and used it for 6 months. It was actually kind of cool to know that I was using something that very few patients had yet used. Anyway, I’ve been in post-chemo remission since June 2002!
Teen Survivor Day
Teen Survivor Day was something organized by Natalie Benson (social worker at the Janeway for J4A families) and Gale Roberts (Oncology Nurse). They had had an idea for something like this for awhile but never went through with it – until I came along. It was December 2000 and I was telling Natalie how I had gone to the Look Good- Feel Better program at the HSC. It was great- free makeup and stuff, but it was definitely aimed at older women. I told Natalie that a workshop was needed for younger people, especially teenagers. That’s when I found out that Natalie and Gale had been thinking the same thing for a while. At my insistence, they planned the First Teen Survivor Day in August of 2001. It was great!- It hasn’t happened since!
Paradise, Newfoundland and Labrador
How did you find out you were sick? What events led to the diagnosis?
I was working as a research assistant and my left knee was constantly swollen and painful. Even though I spent a lot of time on my feet, I thought it strange for my leg to be in such a condition. On the weekend of July 31st, I attended my boyfriend’s baseball tournament and found my knee to be extremely weak – I even fell a few times! That was a Sunday. On Monday I went to my GP, she ordered X-Rays. “Something” showed up on the X-Ray, and that started it all: More x-rays, bone scans, CT scans, MRI’s, biopsy, blood tests, etc.
What year was it? What was your age at the time?
It was August 9, 2000 when I found out I had cancer of some sort. It wasn’t until September 20th that I received an actual diagnosis. I was 17, [it was] during the summer between Grade 11 and Grade 12. Then when I was 18, in November of 2001, I relapsed in my lung – a very common thing to happen to OS patients. I had more treatment and finally achieved remission in June of 2002, at the age of 19.
What was your diagnosis?
Osteogenic sarcoma (more commonly known as osteosacoma); a type of bone cancer
What are your career goals?
She hopes to become a high school teacher.
What were your first thoughts when diagnosed?
I immediately thought of Tyler Johnson, a very dear friend who passed away when I was 14 from a cancerous brain tumor. I remembered telling him how I would never be able to handle having cancer like he did land then, 3 years later, it happened to me! I never did have the “Oh, God why me?” phase because cancer had already been a huge part of my life, between Tyler, other acquaintances and many family members. I thought more along the lines of “Why not me?” There’s no reason why I shouldn’t get cancer while so many others do.
How did your family react?
My family was shocked, upset, scared probably mostly scared. But they were great and we’re a lot closer of a family because of it, especially me and my two sisters, who are my very best friends.
How did your friends react?
Much the same as my family. They rallied around me, offering their support and well-wishes. After awhile the “novelty” wears off. At first, it seems as though any one you ever met comes to visit. Then, as time goes on, only the truest of friends drop by. I was undergoing treatment for two years and by the end of it, my boyfriend was the only one (besides family) who had stuck with me through it all. I don’t hold grudges everyone deals with illness a different way. All my friends and I were also going through a transitional time, even without my cancer – graduating high school, going to different universities, taking time to figure out our futures . Not making excuses for them either, though. I don’t know simply put – having cancer reveals many things to you, including who your true friends are.
What did your treatment consist of?
Medical Side: First time: Cysplatin, Adriamycin, Methotrexate Second time: Ifosfamide and VP 16
Non-Medical Side: The “first time” chemo made me very, very, very sick – that can be blamed on the Cysplatin-Adriamycin combo. As well, the MTX gave me horrible mouths sores. So, between throwing up and not being able to eat that much anyway because of a mouth covered in sores, I felt miserable quite often. The “second time” chemo was not bad at all. I guess by this time I was a seasoned pro at the chemo thing. I ate what I wanted, felt great too.
In which hospital(s) were you treated?
Though I was 17 – 19, I was treated at the Janeway because my cancer is pediatric. I had my surgery (to remove the cancer from my knee and hip) in Halifax.
What is your current medical status?
In remission!! 1 year and two months as of August 19th 2003 (today)!
How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
Getting back to “normal”. I quickly realized there is no getting back to normal instead I created what I call a “new normal.” Cancer changes you in such a way that you’ll never be the same, but the change is a good one.
What is/was the toughest part of your challenge?
I sometimes get weird reactions to this but the worst part was seeing how scared and sad my family, especially my mom, and my boyfriend were. People think being a patient is hard, and it is, but being a person who loves the patient is just as hard, maybe even harder sometimes.
What is/was the best part of your challenge?
I’m a better person a happier person! The simplest things brighten my day and I am more grateful and thankful for every day that I get to enjoy. I was always an optimist, but now I have a different type of optimism – I can’t explain it. I’m just really glad to be here!!
What really motivated you to keep going while you were sick?
Hope thinking of Tyler my plans for the future prayer…seeing the strength other, younger, patients had my determination to beat cancer!
What lessons or messages have you taken away from your experience?
Prayer goes a long way..Never give up hope.Take charge of your disease and make as many decisions concerning your treatment as possible – don’t let your disease control you..Knowledge is power- educate yourself about your disease..And the most important to my experience a positive attitude is a great healer.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
Cancer doesn’t mean suffering, crying yourself to sleep and death as I used to think before I was diagnosed. If given the chance, I would not give back all that I’ve gained from my caner experience. I know now that cancer is a challenge, that some cancer patients are the happiest people I know, and most importantly, people survive cancer!
What are some (if there are any you know of) preventative measures that people can take to lower their risk of having an experience like yours?
I HATE it when I see anybody smoking or baking themselves in the sun, but especially young people. We are growing up in a time when we know all the dangers of smoking and sun exposure – both are linked to cancer! But kids still don’t listen! I never smoked, never tanned and I had cancer-twice! So, if it can happen to me, a really healthy person, it can definitely happen to anyone who chooses an unhealthy lifestyle. As well, eating right and getting some exercise is a great way to lower one’s risk of getting many diseases, not just cancer.
Did you attend any support groups during your challenge?
Kind of. In August of 2001, I attended Teen Survivor Day. It was a day long event that gathered together teenaged cancer survivors. We just talked about our experiences, had some guest speakers, and basically spent the day with other peers who knew about what we’d gone through. It was great to know there were others just like you. I met one guy who was in remission for 5 years from my kind of cancer. He especially gave me a lot of hope and further fuelled my determination to achieve remission.
How are you connected with Young Adult Cancer?
I just talk to Geoff every once and awhile. Checked out the website, emailed Geoff just to say hi and tell him his site was great, that I was a cancer patient, and that I thought YACC was just the kind of thing this province/country/ppl everywhere need! One main focus of YACC is cancer education and I’m a huge believer in the importance of educating the public about cancer and cancer prevention. YACC first caught my interest when I say Geoff on TV, visiting schools to tell his story. Personal experiences told by cancer patients are a lot more effective – it makes cancer real to people.