Donna’s Journey with “Evin”

Donna’s Journey with “Evin”

Donna hopes she’s at a curve in the road.  It’s been a long road since the diagnosis of a non-malignant brain tumour that has been treated with surgery, chemotherapy and radiation. “I never thought I would have to go through all this for a tumour that wasn’t cancerous” said Donna. This is her story.

In November 2013, Donna started having twitches in her lower left leg that left her numb in her calf, and paralyzed in her foot and toes.  She happened to be at her family doctor for an appointment with her son, and she mentioned it to the doctor. He referred her to a neurologist, who met with her in March 2014.  The neurologist suspected Multiple Sclerosis and sent her for an MRI. There was a wait list for the MRI, so she was first sent for an electroencephalogram (EEG), which came back clear.  Finally, after the long wait for her MRI on May 20, she immediately got the results that it was in fact a brain tumour. Her immediate reaction was; “That can’t be right, my children have school to go to, I have to go to work”. The doctors told her to stop work immediately.
 
Donna remembers being very scared on hearing the diagnosis. So much so that she couldn’t tell her children. ”How do you tell your babies that you have a brain tumour and you may or may not be ok”.  She ordered our patient handbooks, but hid them away and read them while her kids were at school. It was only when the neurosurgeon confirmed that it was a non-malignant tumour, with no protruding tentacles, that she summoned the courage to have the conversation. It was still the hardest conversation she has ever had to have, not just with her children, but with her extended family too.
 
Surgery followed a month after the diagnosis. An awake craniotomy. It was not easy and only removed about 10% of the tumour, an oligodendroglioma, grade II. Three weeks later a major staph infection developed in the bone that was removed in the operation. She had a PICC line inserted for 10 weeks, delaying any treatment for her actual tumour. When the infection finally cleared, the surgery to implant the bone plate in the spot that was removed for infection was the third time Donna’s head had been reopened.  Because of all these incisions, the wound did not fully heal, resulting in an exposed bone plate for about a year. She’s had a complete scalp rotation and skin graft, which she is still recovering from.  She jokes: “I have the top of my scalp on the bottom, the bottom on the top, and my left leg is behind my head!”
 
Because the tumour could not be removed, after the infections and bones were put back in place, she was finally medically cleared to begin radiation in October 2014 and 114 days of oral chemotherapy, ending in December 2015. She lost all her hair on the top of her head from the radiation, which unfortunately highlighted all her scars, and not in a way she felt would be positive for every one to see. She still doesn’t leave her house without a hat or covering.
 
While the treatment has finished, the effects are long-lasting. Donna has still not gone back to work since the day of her diagnosis and she continues to battle with depression and anxiety. “Once you have had all these infections, and surgeries, it’s hard not to think of the worst case scenario whenever I get a headache or feel a little off.”   Donna has kept what she calls “tumour humour” though, as best she can. She gave her tumour a name, she originally called him ‘Kevin’ but when the neurosurgeon was only able to remove about 10% of Kevin, they dropped the K and call it ‘Evin’ now.
 
Donna in the newspaperDonna also calls on everyone to advocate for themselves. “You have to have a voice. If you don’t use your voice, who is going to? Knowledge is power, the more knowledge you have, the better prepared you are”. But also strongly recommends to everyone not to Google. Donna got her knowledge from Brain Tumour Handbooks and greatly appreciated the fact that they were available free of charge, and from a trusted source. 
 
She’s also grateful for the help that she received along the way, from family, friends who stepped up, her grade 1 teacher who takes her to appointments, to those who helped navigating the patient journey when it came to paying for treatments. Much to her and her family’s surprise, her chemotherapy was not covered by provincial health care because it was taken at home, in pill form.   “We’d have been bankrupt without benefits”, said Donna. All for one acorn sized, non-malignant tumour.
 
While it feels as though she still has a path to follow on the brain tumour journey, Donna is “looking forward to the day when this journey is behind me. I have faith in my team that our ultimate goal of returning me to my full life is absolutely going to happen. Juravinski Cancer Centre in Hamilton has been nothing short of amazing to me and my family. From all my oncology doctors, drug advocates, to social work support for dealing with all the after-care needed to feel normal. They are kind to my children, my family and friends, and most of all, look after and support everything I need. I look forward to when a headache is just that, a headache.”  
 
Thank you Donna, for sharing your story in Brain Tumour Awareness Month!

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May 2016


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