Current Age (at time of profile): 19
How did you find out you were sick? What events led to the diagnosis?
I was sick with a fever for nearly two weeks, without an apparent cause, and I went in for blood tests, which showed my WBC count dropping like a rock.
What year was it? What was your age at the time?
September of 2006, I was 18.
At what level of education were you at diagnosis?
Just finished high school.
Current age: 20
Age at diagnosis/relapse (if applicable): 18
Hometown: Newmarket, ON
How long has it been since your last treatment?
How often do you have check ups with your Doctor?
How do you feel today, physically (any short or long – term affects of your diagnosis/treatment)?
Since I first posted my profile about a year ago I have gained a lot of energy, and over the course of maintenance therapy I have gradually started to feel the side effects less and I generally better.
How do you feel today, emotionally/socially?
Emotionally I’m a lot better than I was a year ago. It took me going to the conference [Young Adult Cancer Canada Kicking Cancer’s Ass Conference] and talking to others to really see it, but I have definitely moved past a lot of the feelings of isolation, depression, and anxiety over relapse that I was stressing over. No more chill out pills! I have come to realize that there is a definite, steady progression through different stages and emotions over time. That is why I always like to hear from survivors who are further down the road to recovery than me.
How do you feel today, professionally?
I have now enrolled in and almost finished a compressed chemistry course, and will be submitting an application to University in the near future for next fall. School has been really busy and challenging, but I’m really glad to have something new to focus my attention on other than cancer, and has relieved a lot of my anxiety that I wouldn’t be able to get back into it.
What are you goals for the future?
I hope to spend this spring (after I have recovered) backpacking across Europe with my brother, and then enter university in a journalism or political science program in the fall. After that, who knows!
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?
In 10 years I will be 30 years old, and will presumably have been done with school for good for a few years. I hope to get a job where I can write for a living, or generally just spout off on topics that I feel strongly about…If I can get paid to do that I’ll feel like I won the lottery! I hope to be getting married around this time…I have no idea whether or not I’ll want kids in the next 10 years though. I suppose I want what all young adults do in their twenties…start a career that I actually enjoy, travel and see the world, and start trying to actually make an impact on the world.
Do you have any advice for other survivors who may be where you once were?
I would tell them to do the little things that make them happy to get through the bad days, and try to just worry about life day-to-day. I would tell them not to just trust that the healthcare system will take care of everything and make sure to make themselves heard. I would tell them to find a good nurse and doctor who really know how to answer your specific questions, and to get in contact with other survivors because you will be amazed at how they really “Get it”. Finally, I would tell them that the things running through their head are normal and everyone goes through the same stages…and it will start to get better.
Do you work? Not yet.
What was your diagnosis?
What are your career goals?
Start with university and see where it goes.
What were your first thoughts when diagnosed?
Try to keep a positive outlook, and see it as just an obstacle to overcome.
How did your family react?
They were very shaken by the diagnosis, especially older family members more accustomed to seeing cancer as a death sentence.
How did your friends react?
For the most part my friends were great. They didn’t really treat me differently and they wanted to be supportive. The only issue I encountered was a lot of the time I didn’t want to have to deal with visitors when I was in the hospital or when I was very sick, so I had to try to tell them to give me some space to deal with this without sounding ungrateful for their support.
What did your treatment consist of?
Medical Side: Stage 1 (induction) was a month of intense in-patient chemo, stage 2 was 10 days of brain radiation and lumbar punctures, stage 3 (intensification) was 30 weeks of out-patient chemo, stage 4 (maintenance), which I am currently in, is about 1-1.5 years of reduced out-patient chemo. At this point much of the first stage is a foggy memory.
Physically I was often too weak to sit up and, after a heavy dose of methyl-trexate, I was extremely sick and in some pain.
Mentally it certainly wasn’t fun, but I think at that point I was more or less too exhausted physically to spend a lot of time thinking about my situation. The LP’s were obviously uncomfortable but I got used to them. The radiation made me extremely nauseous, until an excellent Nurse Practitioner prescribed a low dose of dexamethazone to me to reduce brain swelling.
Stage 3 was a bit of a relief at the start because I began to improve and get into a routine. However, along with it came a seemingly never ending list of complications ranging from routine fevers to pancreatitis, which caused severe pain attacks and further complications which I am still dealing with. This may have been the most trying period mentally as well, because it seemed like I got a never ending stream of bad news. However my doc made a bunch of adjustments and some compromises in my treatment plan, which has allowed me to resume chemo in the maintenance phase. So far it has been easier to bear physically and I have much more energy. Mentally this has actually proved to be challenging because I now have time to reflect on my current situation and my future, which can be depressing if one does not keep the right mind set. This is why I joined RealTime Cancer!
In which hospital(s) were you treated?
My cancer treatment is done at Princess Margaret Hospital, although I have also frequented the halls of Southlake Hospital and Toronto General Hospital, and had procedures done at Toronto Western Hospital and St. Michael’s Hospital.
What is your current medical status?
I am currently in remission and progressing towards the end of my treatment.
How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
Physically I have to deal with my new limits, as I have gone from the body of an active 18 year old doing pretty much whatever I wanted, to a much weaker and more fragile one.
Mentally, I have to remind myself to live one day at a time and not to worry about the future as much or let little things bother me.
Socially, I find that I have to make an effort to will myself to go out and be with my friends, but it is always best when I do make that effort, because being with friends often helps me to forget my health worries.
What is/was the toughest part of your challenge?
Maintaining my composure over such a long period of treatment. It is not so much the bad days that make it so terrible, but the fact that I must endure this physically, socially, and mentally for so long.
What is/was the best part of your challenge?
It has forced me to sit back and take a look at life and what it means, who I am and where I am going.
What really motivated you to keep going while you were sick?
The fact that I will get to go out and really start my life as soon as I am well.
What lessons or messages have you taken away from your experience?
In a way it has made me into a more patient, laid-back person, with a better view of the big picture as well as seeing the value of just living day to day, for the moment.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
I can’t say it’s any easier than I thought it would be! Certainly I am not as ignorant about cancer, medication, or hospitals in general as I was.
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?
None, unfortunately. My doctor told me this was a mutation caused by pure chance and most of my complications have been caused by the chemotherapy itself.
Did you attend any support groups during your challenge?
If you did not attend a support group, why?
There were several available at Princess Margaret but, I did not really want to make my issues public, especially at first. I suppose this is something everyone must overcome before they join a support group. However, with support from my family, a few other patients, networks like this, and a therapist I feel good enough most of the time.
It may have helped if I had attended one.
How are you connected with Young Adult Cancer?
A psychologist at Princess Margaret told me about the website.
I think it is a great way to have a support community dealing with some of the same situations as myself that I can access right from home.