When Amber Noden was diagnosed with a rare form of cancer, she felt so alone.
Not only was she coping with the shock of learning that at just 49 years old, she had a life changing health diagnosis, but on top of it all, there was nobody around who knew what she was going through.
In February of 2017, Noden was diagnosed with chronic myelogenous leukemia, also sometimes called chronic myeloid leukemia (CML), a cancer only 500 Canadians get diagnosed with annually.
“It was very difficult when I first got diagnosed because I felt so alone,” Noden said.
“I had to do a lot of research to try and find other people that I was able to talk to that could help me understand and have support, so it was very difficult in the beginning for me.”
Noden was diagnosed with cancer after she had an ingrown hair under her arm become infected. She was on a cruise when she noticed it, so when she got home she went on antibiotics to help clear up the infection. In the meantime, Noden was getting increasingly more exhausted, and she struggled to walk up the stairs and make it through a full day of work as an accountant.
Noden started suffering from pain in her arms so bad she could barely get a glass out of the cupboard. After the antibiotics didn’t work, her doctor took a blood test and noticed abnormalities in her blood. After visiting a hematologist, it became clear she had cancer.
“I think we were just – both my husband I were both just driving around in a fog. I hardly think we said anything the whole ride home, because we were just I think so stunned. You’re just not expecting (this) to happen to you,” Noden said.
Noden was eventually diagnosed with CML, a type of cancer that never goes away and that she has to constantly live with. It is a cancer of the bone marrow and it causes an increased number of white blood cells in the blood.
To treat the cancer, Noden doesn’t need to go in for radiation or chemotherapy but rather she take medication to keep the cancer cells under control. However, she will never be able to go into remission.
While Noden is thankful she doesn’t need to get chemotherapy or radiation at the Cross Cancer Institute, she said in some ways she misses out on the community and support that comes with traditional cancer treatments. Eventually, Noden found an online community of people who also suffer from CML who could help answer her questions and offer her support.
“I spent a lot of time online trying to find where I could find some support – to talk to somebody else that might have this same type of cancer so I can understand what I'm expecting, because honestly, as soon as you think you have cancer, the first thing you think is you're going to die,” Noden said.
“There were a few darks months in the beginning.”
After Noden found support online, she felt a little less hopeless about her cancer.
Since her diagnosis three years ago, Noden's life has changed drastically. The cancer and the medication she takes makes her extremely exhausted and fatigued at all times.
The accountant tried to go back to work several times but was barely able to get through a few days without completely exhausting herself physically, which then caused her emotional exhaustion from trying so hard to keep up. Eventually, Noden had to quit her job and go on disability.
Noden had to give up her hobby of photography because it was exhausting to even sit for a long time going through photos she had taken. Usually during the day, she has to lay down and rest her body because of the extreme fatigue that comes with the illness. She is not able to cook meals like she used to and the couple now uses a meal delivery service so Noden isn’t exhausted from just feeding herself.
Travelling has become too exhausting and is also no longer something Noden can really enjoy like she did in the past. Over Christmas, Noden and her husband flew down to Arizona to spend time with her parents.
“To travel just completely wears me out. To get on a plane and to go to Phoenix, it was exhausting. It just exhausts me," she explained.
“Traveling is not going to be nearly as fun.”
Noden is also having to cope with the mental and emotional burden of knowing she will always have cancer. Noden said it feels like somebody is holding a gun to the back of her head and could pull the trigger at any time, a feeling she said is likely common among people with cancer.
“It’s pretty heavy.”
“Even though it's kind of always in there, as long as dormant, you try and forget about it.”
