Kentville, Nova Scotia
How did you find out you were sick? What events led to the diagnosis?
I began having severe migraines that were different then any I had had previously. I went to my doctor to see what was up and was phoo-phooed, given some pills and told that it happens. These things change and there’s nothing that can be done. A few months later I went to have my eyes examined and the ophthalmologist freaked when he saw the blood vessels swollen behind my eyes. He sent me for a CT in Kentville, there I was told I had a lesion and would have to see my family doctor the next morning for more details. That night I was freaked, I thought they must have me confused with another patient, morning would come and it would be sorted out. Morning came and my family doctor was away on vacation so I saw someone else in the office, he told me I had to go to Halifax that morning for an emergency MRI. Away we went, still hoping it was a mix up. I arrived at the hospital, had my MRI and all hopes were dashed, I had a large 6cm by 6cm tumor in the right front area of my head. I had planned to go shopping after the MRI but was told that no, I wasn’t going anywhere, I was admitted and that night at roughly 9pm, I was operated on. The good news was I didn’t have to have my head shaved, I was very lucky, the surgeon was able to cut temple to temple and peel the front down to make a burr hole in my forehead and then suction out the tumor. I woke up very confused and still not sure what was going on. I was in the hospital for five days before being discharged. After getting out I went straight to the mall and bought something pink and girlie. I made a few clerks pale when they saw the staples in my head, it looked a little like a headband until you looked closer and saw they were staples in a neat row around my skull. My family and friends were in complete shock, my mother was in denial. The tumor was sent off to pathology and didn’t appear cancerous. I was obviously happy at the news. About a year later, I started having headaches in the spot where the tumor had been, I went for another CT and nothing was found. I then had my annual MRI in November and another tumor was found. It wasn’t as big as the first one fortunately, it still had to come out though. I chose to wait until after Christmas for the surgery and had it removed in January. Same recovery time as the first. Now I would have to go through chemotherapy, which I began in March. I was obviously nuts that year. I was also getting married in June and I don’t know how I got through all the crap that comes with that sort of thing. My husband’s family felt we should have waited for a “better” time to get married. I’m not sure what that means exactly. I felt better to get married now because the future was too unsure, who can tell if there ever would be a better time, so we did it anyway. My husband has been with me through this and without him I don’t think I would have made it. I’m a lucky girl to have him.
At what level of education were you at diagnosis?
I was in my second year of study at Acadia University
What was your diagnosis?
What are your career goals?
Besides coping and dealing everyday she’s hoping to finish her degree in mathematics at Dalhousie University.
What did your treatment consist of?
Medical Side: The chemo side effects were not the highlight of my life. Mostly slow advancing neuropathy and loss of appetite. I lost a few pounds, only three or four but I was only 105 to start with so a little goes a long way. My blood counts dropped severely and so my dosage was cut back to counter this. I was originally supposed to have six cycles; each cycle took six weeks to complete. With blood count setbacks, I had only completed four cycles in December, when my oncologist said there was no point in continuing since we couldn’t cut the dosage anymore than it already was. That was fine by me; I viewed it as an early Christmas present, no more needles, and no more drugs. I had a MRI checkup in January and the chemo seems to have worked its magic. No signs of recurrence in “the spot”. My side effects from chemo are fading and now I make my way from MRI to MRI, hoping no more changes. The hardest part of chemo for me was knowing it wasn’t meant to kill the cancer, just slow it down. I was buying time and there were no guarantees with it. Still I would do it again if it meant keeping the surgeries away. The risk with surgery is complications with the anesthetic, an oops moment and because it’s in the right frontal area (personality center), I could wake up somebody else. There is also the problem of scarring and eventually surgery will not be a viable option. Side effects from the surgery have been the usual. I have problems with language recognition, memory problems, specifically names and events. This has meant my previous interest and studies in school have had to be changed and revised. I was originally studying history and languages, now I will be pursuing mathematics.
How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
I study voice privately and use it as a memory therapy as well as getting me through my days. I am eternally grateful I am still able to sing, I know some people after brain surgery that are not able to speak anymore. I feel that the cancer has helped me appreciate the now much more, I still fuss and worry about the future but I’m a lot calmer about it than before.
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?
There aren’t any preventative measures for brain tumors. We don’t know what causes them, however I would like to say that aspartame has been shown to cause brain tumors in labs animals so my suggestion to people is too stay away from it until it is conclusively shown to be safe for human consumption.
Did you attend any support groups during your challenge?
The only support group I attended was a skills for healing cancer retreat in the fall of 2004, there I met Geoff and heard about RealTime Cancer. I’m interested in attending a brain tumor group that meets once a month in Halifax but transportation is a problem for me. I’m hoping the summer will be better and I can go and see how it is. The cancer retreat was absolutely amazing and I recommend anyone who is on the fence to go, it was so fantastic. I’m hoping to go to the one in Newfoundland this fall if money and time permits.
How long has it been since your last treatment?
It has been a year and 4 weeks since I finished my time on chemo.
How do you feel today, physically (any short or long – term affects of your diagnosis/treatment), emotionally, spiritually?
Short term effects of chemo seemed to have gone away, which is a relief. I wasn’t a big fan of the tingles from the neuropathy in my hands and feet from the vincristine treatments.
How has your physical, emotional and spiritual well-being changed since the last time we checked in with you?
I find it very frustrating to no longer be the person I was before in my abilities; still trying to figure out who I am with the “new” brain. It has led to some very depressing days which I did not have in short supply before. I suffered from clinical depression for roughly two decades and this was just another reason to go under further. Fortunately, I think in many ways it gave me the ability to try to change the depression loop into something more positive. Sounds strange I know, but with everything in upheavel in me, I had to sort though a lot of “stuff” and, in the process, I think I was able to work through some thought patterns that were holding me back. I still have a lot to sort out and a long way to go through this transitional phase of going from survival mode to “normal” life.
What are you doing today? (school, work, recovery, etc)
I am continuing to share my life with my husband. He has been, and I expect will continue to be, a tremendous source of support for me through all this. Currently, I have forgone my plans to go to university and instead have decided to focus solely on music. I’m currently working toward my grade eight in vocal studies in the Royal Conservatory of Music program. It is a slow pace that I can take at my own rate, with no pressure on deadlines other than the exam times to be prepared for, which is pretty good.
What are you goals for the future?
For future goals, I have the hope of continuing my studies through the R.C.M. and eventually earning my teacher’s ARTC and teaching voice. Things are still feeling a little in limbo land, waiting for a tumor that I’m told will come and likely disrupt any plans that I try to make. My doctor isn’t always the most optimistic person to be found.
When you see yourself 10 years down the road, how does the picture look? What’s in it, what do you like, what do you not like?
Ten years down the road is past when I generally think the average life span for someone with my diagnosis is five to ten years and I’ve already gone through three of those years. Now I know those are just statistics, but they still apply to people so I just try to take it as it comes and not put my hopes on something that has a good chance of not coming true. The hardest part of all this is that there is no end, no milestone, and if you can get there, then your chances of relapse are reduced. Just a wait until it comes again; the waiting is the hardest part, nothing to do but stress about something you can do nothing about. I think I’m handling things better now. I’ve been seeing a therapist who has helped me a lot and meeting everyone who was at the retreat in Newfoundland helped tremendously. So, for now, I’m trying to focus more on now and trying not to think about a future that doesn’t exist until it’s here. The past is already gone and the future is just a guess, all anyone has is now.