TORONTO - It's difficult enough to be diagnosed with a disease like early-onset Parkinson's at the age of 43, but what if breast cancer is added to the mix just eight months later?
That was the reality that Robyn Michele Levy had to confront about five years ago, and which she's talking about now in her book "Most of Me: Surviving My Medical Meltdown" (Greystone).
"I'm not planning on getting any new diseases," the Vancouver writer-artist-blogger quipped in an interview, conveying the same trademark wry sense of humour that is sprinkled liberally throughout the book.
"My disease portfolio is quite full, thank you very much."
The book is a funny, sad, crazy roller-coaster ride through the medical system, and a personal journey that involves learning to live in a body that is seemingly irrevocably changed by two diseases at the same time. But Levy manages to mitigate the weightiness here and there, for instance by describing her sometimes weepy self as Cry Lady and personifying her breast prosthesis, named Dolores.
"Parkinson's was on the front burner, and then when I got breast cancer, that sort of shifted and I had a bit of a reprieve from dealing with the Parkinson's," Levy said.
"I still had to cope with it on a daily basis, but it wasn't forefront in my mind, because I had to deal with -- within three weeks of being diagnosed with breast cancer, I had a mastectomy and then I had to face the other choices of 'Was there going to be radiation or chemo or further surgery?' and that just became my focus."
Now that she's cancer-free -- she hopes -- Parkinson's is taking centre stage again.
Levy briefly interrupted the telephone chat to gulp down some medication for Parkinson's, noting that she has to take it five times a day, at intervals of three to 3 1/2 hours.
She is also taking the breast cancer drug Arimidex, which lowers estrogen hormone levels.
Dr. Susan Fox, a neurologist at the movement disorders clinic at Toronto Western Hospital, said it's a fairly uncommon scenario to see Parkinson's disease and breast cancer together in someone who's so young.
She personally has one patient with breast cancer on top of a diagnosis of Parkinson's disease, and the woman is somewhat older.
"Patients with Parkinson's do tend to generally be healthy," she said.
"They tend not to smoke, they tend not to drink much so they don't have many of the commoner aging-related or those sorts of diseases -- strokes and heart disease and chest disease. Some of them obviously do get cancers."
The average age of getting Parkinson's is about 60, added Fox, an associate professor at the University of Toronto.
Levy's "medical love story" features a "dark-haired middle-aged dame in distress." At the outset, she was ensconced in her job as a CBC Radio 3 producer and realizing something wasn't quite right, but it took some time to get the Parkinson's diagnosis.
When breast cancer was also identified, she had numerous emails and calls from family and friends but no energy to respond to everyone personally.
"I did a little update by email, and it was kind of a quirky short story, about 500 words, about my experience with one of my doctors, and it was kind of funny," she said.
"It cheered people up, which I thought was interesting. And they would send me back their stories, or just tell me how they wished me well and it became a way that I would communicate with family and friends for a period of time."
A friend knew a publisher, who invited Levy to submit a book proposal.
The book reveals a lot about her feelings and her family -- a wonderfully supportive husband and a teenage daughter -- and there were times when the writing process was quite difficult, Levy confessed.
Her editor found the first draft to be amusing, but the budding author was told to dig deeper.
"She felt that she didn't have a real strong emotional connection with me, because I wasn't getting under the surface of how I was doing and feeling ... so I went back and my second rewrite was much more personal and I got in touch with the darker and the more disturbing parts."
These days, Levy works on the computer at home, blogs and does exercises.
She had an exhibition of her artwork at a Vancouver gallery in April, and gave 25 per cent of the proceeds to a Parkinson's organization in B.C. Her digital drawings -- including some stylized ones showing a one-breasted woman with a mastectomy scar -- grace her website.
"My life, in so many ways it has changed. Physically I have a lot less energy than I used to and without the medication I would become sort of a walking stiff zombie," said Levy, now age 47.
"I'm sort of used to a fair bit of muscle stiffness and rigidity and pain and just ... you know, when you feel kind of achy and creaky? That's just kind of my normal."
So far, reaction to the book has been positive. "Most of Me" was among the top 40 books nominated for the Canada Reads: True Stories list, and Levy said this was "quite a gift especially considering the book just came out." However, it didn't make the cut when the list was whittled down to 10.
