Life after cancer

By Nicodia Williams

46-year old Colleen Hofmeister wants to live to see her two children graduate high school, college and if she’s lucky, dance at their weddings.

Her dreams, however, were overshadowed by a silent and sometimes undetected killer, cancer. Diagnosed with the second most deadly cancer, breast cancer in late 2007, Colleen says she never imagined she’d be diagnosed with breast cancer. “I did everything right, went for regular mammograms and sonograms, but the cancer went undetected until it had spread throughout my skeletal system.”

Hofmeister, from New York State is still battling cancer and has since been labeled “incurable”, but that does not stop her from living life. “I don't feel incurable; I feel like I just need to hang in there long enough until somebody discovers a cure. I live in constant pain, but I am still living.”

According to the American Cancer Society’s 2009 Cancer Facts and Figures, the 5-year relative survival rate for all cancers diagnosed between 1996-2004 is 66%, is up from 50% in 1975-1977. These increasing numbers reflect progress in diagnosing certain cancers at an earlier stage and improvements in treatment.

The National Cancer Institute estimated that there were 11 million cancer survivors as recent as 2006, representing about 4% of the United State’s population.

“I felt robbed of my innocence when I received the diagnosis. It wasn't that I didn't think I'd ever be diagnosed with cancer; but surely I was doing everything I could to ensure if I did receive a diagnosis, it would be in the early stages and curable,” said Colleen.

In more ways than one, the battle for cancer is not always over for cancer survivors once treatment has ended. For some survivors, they face a range of physical, emotional and psychological effects and have to “start over”.

Cancer is often viewed by the general public as an automatic death sentence. But now that patients are living longer after treatment, there’s a growing interest in finding out exactly what challenges survivors face and how they cope with everyday life.

Amy Grose, Psychological Program Leader in the Lance Armstrong Adult Survivorship program at Dana-Farber Cancer Institute said that the survival process does not start until treatment has ended. She believes many cancer patients think of cancer as a “chronic illness” instead of a curable disease.

“At our survival clinic, many cancer survivors don’t want to talk about their feelings sometimes. You have to do it your own way and figure out what’s important for you as a person. Whether it’s feeding your kids or raising awareness, that’s what makes you a good survivor,” said Grose.

It was 2007 and Boston native Meaghan Edelstein was a 28-year-old law student. She noticed some unusual bleeding that led her to several doctors who tested her, scanned her, and advised her that nothing was unusual. As the bleeding and discomfort increased, she knew that something was wrong but no one would listen to her concerns.

Later that year, after being misdiagnosed for two-months, she was diagnosed with terminal cervical cancer and started on her journey though chemotherapy and radiation. Told that she did not have a chance to live, she ignored the recommendation to give up and pushed herself through treatment, grateful to finally be heard: if nothing, she had a diagnosis.

Today, Meaghan is a survivor. Though her body and life are changed from the experience, she has emerged with a new sense of purpose and appreciation for her life.

“I’m not the "same" person but I am not living every day as if it was my last. “I guess the way I would describe is that I am living life with more knowledge and appreciation for things. I don’t think you can go through a life altering experience like surviving cancer without changing,” she said.

Unlike most cancer survivors, Meaghan said she never calls herself a survivor; instead she prefers to call herself a “cancer fighter” because the battle continues on long after the treatments stop.

“Many people think the treatment is the hardest part but in fact it’s the battle afterwards that I found most challenging,” she said.

For other cancer survivors, there are physical repercussions that outweigh the emotional ones. 61-year old Evelyn MacDonald only remembers waking up with pea sized lumps on her back and feeling like she had what she called a “bad hangover” but never thought anything of it because she did not drink.

After undergoing a complete physical in 1995, Evelyn’s doctor diagnosed her with non- Hodgkin’s lymphoma, cancer of the lymphocytes, a type of white blood cell. The major indicator of this type of cancer is swollen lymph nodes.

“Honestly when I was first diagnosed I do remember there were a few times when I went for a walk or went shopping, I would look at the river and all the beautiful trees and birds flying. I wondered if that would be the last time I would see all these simple but peaceful landscapes,” MacDonald said.

Evelyn, who lives in Alberta, Canada, says she remembers getting her first dose of chemotherapy and the feeling of “little pacmen” running around her body killing bad cells. However, after treatment, Evelyn had an even bigger problem, an eroding jaw line and mouth sores.

“As far as my dental problems are concerned, no one knows for sure, as it was a clinical trial that had never been done before, but I do believe it was caused by the high dosages of chemotherapy I received.”

In late 1995, Evelyn underwent a bone marrow transplant and as of fall 1998, she is cancer-free.

“I do definitely believe your inner strength and attitude play a huge factor in your recovery,” she said.

Because of issues like Evelyn’s, Amy Grose said experts in the field are beginning more research and other initiatives to help survivors.

“A number of the survival clinics that are available to cancer patients are still in the infant stages, but they are quickly growing. People would be surprised that the level of depression and anxiety some cancer survivors face is not much different than the American public at large,” said Grose.

Since her diagnosis, Colleen says she has become very outspoken about her cancer battle, taking advantage of television interviews, magazine and newspaper articles, and most recently, she has become an avid writer for several online publications for women with metastasized cancers.

“Tie cancer statistics up in a pretty bow and a cure is nowhere in sight,” she said. “Moms don't die, only in Disney movies. Childhood should be about the children, not about the sick mother. My children continue to be my biggest motivator, the reason I hobble out of bed each morning. My long term goal is to hold my grandchildren at the awards ceremony while both my kids receive the Nobel Peace prize. Lofty goals, but they keep me going,” Colleen said.