Colter Long

colter long - profileAge at Diagnosis: 18 (2004)

Hometown

Stettler, AB

How did you find out you were sick? What events led to the diagnosis?

I was getting frequent nosebleeds, I was tired all of the time and I got fevers and chills at night. My mom took me to the emergency room in my hometown and they had me take a blood test. A couple days later, I saw a doctor in Red Deer who sent me to the children’s oncology ward at the U of A hospital. My symptoms were detected very early so there were not enough blast cells to confirm that it was cancer. I was treated a few months for an infectious disease. The medication I was given cleared the symptoms but when I stopped taking it, the signs came back. My bone marrow exam revealed that it was leukemia.

It was treated over the course of a year by chemotherapy. I was cancer free for about 3 years. In August 2004, I found a lump in my testicle and a biopsy confirmed that it was cancer. I underwent a stem cell transfusion in February 2005.

What year was it? What was your age at the time?

I was first diagnosed in September 2001 at 15 years of age and then again September 2004 when I was 18.

At what level of education were you at diagnosis?

I was in Grade 9 and then again when I was beginning post-secondary.

Do you work? Yes.

What was your diagnosis?

Acute Lymphocytic Leukemia or A.L.L.

What are your career goals?

Currently, I am pursuing public relations.

What were your first thoughts when diagnosed?

I was told early on that cancer was a possible diagnosis. When I was finally told that’s what I had, it was a relief.

The second time was very similar. I was told it might be cancer again and then, when it was, I felt devastated. At the same time, I took it step by step and tried to live my life as normally as I could until my body wouldn’t let me anymore.

How did your family react?

My family was upset, but nobody knew what to expect so they didn’t know how to react. My parents visited me every weekend that they could and supported me a lot. I was very fortunate that my grandma was able to stay with me for a couple months prior to my transplant.

How did your friends react?

My friends were introduced to the idea of me having cancer gradually. I didn’t act much different so I wasn’t treated differently. A lot of people avoided the subject and eventually, I think people forgot about it. The second time, my friends were mostly disappointed that I had to go through it again.

What did your treatment consist of?

Medical Side: My first diagnosis was treated with in-patient and outpatient chemo. My bone marrow transplant was much more invasive and included harsher chemotherapy as well as radiation.

Non-Medical Side: The worst thing for me was losing my independence and my dignity. I take pride in my appearance and how others see me. I am the type of person that needs at least an hour to myself in the morning to get collected and be ready to see people. I became very depressed and stopped caring about myself. I believe that to be whole our physical, emotional, and spiritual sides have to be connected. When one is out of order, they all seem to fall apart. I became very disconnected in all of these areas and, as a result, I shut myself off from everything. I didn’t want to experience what I was going through so I became dependent on morphine and tuned myself out of what was happening around me.

In which hospital(s) were you treated?

The University of Alberta, The Alberta Children’s hospital, the Foothills and Tom Baker Cancer Center.

What is your current medical status?

Post bone marrow transplant.

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?

I don’t think I live much differently than anyone else my age. To look at me and my life, I don’t think you would suspect I was recovering from cancer. I lost a lot of muscle mass and flexibility in the hospital. Physically, I look completely different, but not worse, just different. This experience has taken me down a new path, but I believe it is the one I am meant to travel.

What is/was the toughest part of your challenge?

The hardest thing had to have been having a companion around at all times in case something happened. I need my space to restore my energy and I found having someone around really draining.

What is/was the best part of your challenge?

I’ve gained a new perspective that makes every day life easier. Little things that would stress other people out don’t phase me. I am much more grateful for the smallest things and that makes life more pleasurable.

What really motivated you to keep going while you were sick?

I am motivated today because I don’t take any opportunity for granted. I access every resource available. I also want to show all the people that prayed for me that my life was worth saving.

What lessons or messages have you taken away from your experience?

My motto is that Everything happens for a Reason. I say it in my head all the time. There were times in the hospital that it was hard to understand but it still proves to be true for me.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?

I know that my illness was a blessing in disguise. It has made me who I am today and that person is someone I can be proud of.

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?

LIVE LIFE! Don’t avoid ANYTHING because you fear that it can cause cancer. Everything causes cancer. Enjoy the life you are given and indulge in it. Do what your body tells you and what makes you feel good.

Did you attend any support groups during your challenge?

No.

If you did not attend a support group, why?

I didn’t because I wanted to deal with it by myself. I didn’t want to let others in. I became very closed off. I didn’t want anyone to see me weak.

How are you connected with Young Adult Cancer?

The psychologist for the out-patient clinic I go to introduced me to it. So far it has been a great resource and I think it will be a great opportunity for me.