How did you find out you were sick? What events led to the diagnosis?
While I was sitting on the train from Ottawa to Toronto I developed this terrible pain in my left shoulder. It was so painful that I had a hard time taking deep breaths. I also had a small lump beneath my ear that had showed up a few days earlier, but it was not too bothersome and it was starting to go away. The next morning the pain in my shoulder was still there, so I decided to go to the ER at a hospital near my work. But, I didn’t make it into work that day. Along with the x-rays, angiogram and CT scan, they also took blood. By 4 p.m. that afternoon, I got the “we think it’s Leukemia.” The next three days were a whirlwind of tests, lots of blood taken, bone marrow biopsy, x-rays, ultrasounds etc. so that a complete diagnosis could be made.
What year was it? What was your age at the time?
It was May 24, 2005–three weeks after I turned 29.
At what level of education were you at diagnosis?
Completing my MSc. degree and working at Toronto Public Health.
What was your diagnosis?
B Cell-Acute Lymphocytic Leukemia
What are your career goals?
To apply for a PhD program and continue working in the public health field.
What were your first thoughts when diagnosed?
“No, I don’t think so. I told you that my shoulder hurt, how did you come up with Leukemia?” Although–as a little aside–the nurse had given me Tylenol with codeine for the shoulder pain and it had already kicked in so I was pretty mellow when the doctor told me the news-plus to be honest I don’t know how much I believed her. The next morning though my mind was turning like a hamster wheel, mainly with two thoughts: What am I going to do? and How in the world am I going to tell my family?
How did your family react?
Mainly shock and disbelief. Maybe some anger that this was happening. But everyone was extremely supportive-and still is. It is so amazing!
How did your friends react?
Shock and disbelief, but again everyone rallied to my side. Some of my friends admitted to me that they had some concerns about what to say to me at first, but they decided that really I was still me and if they said something that was upsetting I would let them know. It was the best attitude.
What did your treatment consist of?
Medical Side: When I was first diagnosed, my bone marrow was already packed with leukemic cells, which made the biopsy a little difficult; the doctors had to try in four different sites. My hemoglobin and platelet counts were falling quickly so I had to receive blood and platelets. Blood and platelet transfusions have become a fairly regular thing for me now. I had a Hickman catheter put in, and about six days after diagnosis, they started me on chemo. I was going to follow the Dana Farber protocol. The first part of the Dana Farber protocol is called Induction and the goal is to get rid of most or all of the cancer cells to achieve first remission (which hopefully lasts forever). Most of the treatment was done as an in-patient, although I did get a chance to spend some time at home. The drugs include methotrexate, vincristine, doxorubicin, prednisone, cytarabine, and perhaps a few more that I can’t remember. Most of the drugs are given intravenously, but some need to be given intrathecally (which is essentially a spinal tap and then they push in some drugs-this sounds a lot more scary than it actually is). At the end of induction (which is about a month long), I decided to transfer my care to Ottawa where my family lives. My doctors there decided to treat me with the HYPER-CVAD protocol. The drugs are almost the same with a few additional ones, but given in different doses and schedules. Very shortly I should be getting a bone marrow transplant. I have to admit that I have some anxieties about the procedure because I really don’t know what to expect. From what I have been able to gather, people have very different experiences with transplants.
Non-Medical Side: As for the emotional of treatment; when I was first diagnosed, I decided not to go down the “why me?” route because I knew that I would find no answers and drive myself crazy in the process. With my health sciences background I was able to look at my situation very clinically. I knew where to find information and how to interpret it, and that helped tremendously. Therefore, for myself, the most difficult thing emotionally is dealing with the physical side effects of treatment. Losing my hair and eyebrows was not the shock that I thought it would be. When my hair started to come out in clumps, I thought, “Yep, time for a razor” and a friend came over and shaved my head. He did a really good job too. But what is really difficult is being so tired all the time. It’s so annoying not being able to sustain any type of activity for very long. I’ve always enjoyed doing lots of things and now daily walks are pretty much my speed and after 20 minutes I’m already short of breath and if there is a hill, well that’s almost the end of my walk. Then there is the falling out of shape part. I think I lost 15 pounds just in the first month and because of the high dose of prednisone I was on I had a lot of muscle wasting. Now, even though there are days that I would feel well enough to lift weights I can’t because I could displace my hickman catheter, so I just stick to 10-20 pounds. My hickman catheter also means that I can’t go swimming which was very hard this summer when the temperature hit 37 degrees with humidex. One of the most difficult thing to deal with is that after chemo and my bone marrow transplant I may not be able to have children. It’s weird, I always thought that I had plenty of time. I like the idea of adopting because I thing that it’s a wonderful thing, but even that is a little more difficult when you have had cancer. Some agencies require that you have been in remission for a certain amount of time–at least five years for some. But there are a lot of options out there and I am sure that in the end I will be able to have a family.
In which hospital(s) were you treated?
Sunnybrook Hospital in Toronto and the Ottawa Hospital, General campus.
What is your current medical status?
Remission and almost halfway through the first part of treatment and awaiting a bone marrow transplant.
How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
Very different in most aspects. When I was first diagnosed my friend bought me a bracelet that said, “this sucks.” I couldn’t have come up with a more appropriate sentence myself. And honestly, once you admit that, it helps to be more positive. I have always been a “the glass is half full” type of girl and I know that is making things much easier for me. Being happy and laughing makes everyday a little easier.
Spiritually, I can’t say that I have changed very much; my thoughts and beliefs are still the same but I certainly do have more time for reflection.
Socially and physically, cancer is definitely cramping my style. I can’t do what I want, when I want. But I discovered that the trick is to do as much as I can when I feel good. At first, I was tempted to say no when someone asked me to do something that was a few weeks down the road because I didn’t know if I was going to be feeling well, in the hospital, etc. So now I just say yes and if I can go great, if not then next time. My friends understand if I can’t make it; they also understand if I need to go home early.
What is/was the toughest part of your challenge?
The most difficult parts of my challenge are the loss of independence that I feel and how quickly my life changed. I had a great job and great apartment, was taking sailing lessons, playing soccer, and I had plans for enjoying the summer, and then the doctors were telling me, “you have cancer, this is what you will be doing for at least the next year of your life.” Being single and having no family in Toronto (although I have great friends who would have helped me out as much as possible), I decided that after induction I would move back to Ottawa. I know that this made my immediate and extended family as well as my friends in Ottawa very happy because it was difficult for them to come and visit me in Toronto. I know that financially this was a good decision because I would not be working for I don’t know how long. I also know that my usual “I can handle this myself” did not apply in the situation that I found myself in. I know all of these things and yet I struggle with feelings that I’ve run home and took the easy way out. It’s ridiculous, sure. If this had happened to someone else I knew and they were making the same choices as me I would say, “You’re doing the right thing.” But for me, I wondered for a long time. This is why it’s the most difficult part of my challenge.
What is/was the best part of your challenge?
No matter how much I get sick, there are times that I feel very blessed. I have so much support. Everyone came to bat for me: my family, my friends, my co-workers, and acquaintances. It’s not every day that you get to witness the very best in a lot of people at the same time. And to know so many people care and are concerned for me–it is very humbling and the very best part of my challenge.
What really motivated you to keep going while you were sick?
Planning what I am going to do after. I have always liked planning–it’s 50 per cent of the fun. I like to think of the great trip that I am going to take when my doctor gives me a clean bill of health to leave the country. I like to plan on going back to university. I can do anything, really. And that feeling of endless opportunities really motivates me. Another motivator for me is other cancer patients that I have met in the hospital. Many of the women that I have shared a room with were very sick and dealing with many things. To see how they face their challenge is also very motivating. Having a great medical team also helps; my oncologists and nurses are very good and really supportive and that makes a big difference.
What lessons or messages have you taken away from your experience?
The biggest lesson that I have learned is not to create obstacles for myself. Before I had cancer, I would have all these reasons why I couldn’t do something: not enough time, what would other people think, what if I embarrass myself, etc. But now I think: just do it. It’s not so much the idea “do it now because tomorrow you might not be able to,” but more “why not do it today?”
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
I recently told a friend of mine, “for all that I thought I knew about cancer, I really knew nothing.” When I got sick, what did it matter that I could talk about the genetics of cancer, or cancer epidemiology or any other clinical aspect. Sure it helped me understand what the doctors were saying, but what it really meant for me, what patients and families go through. I knew nothing. It’s embarrassing how ignorant I was. Now I know, the reality of cancer is something totally different.
Do you know of any preventative measures people can take to lower their risk of having an experience like yours?
When it comes to risk factors for leukemia, most studies are inconclusive and they are not sure what causes it. But living a healthy lifestyle and taking care of your body is the best thing to do. It didn’t stop me from getting cancer, but starting out healthy is certainly helping me through the difficulties of my illness and treatment for it.
Did you attend any support groups during your challenge?
If you did not attend a support group, why?
My diagnosis is fairly recent and I have not had the chance to sign up for a support group. But I did hear of a group at the Ottawa hospital called Connexions 18-35, which is a support group for young adults with cancer. I am hoping to attend their meetings.
How are you connected with Young Adult Cancer?
A friend had heard about RealTime Cancer through an acquaintance and passed on the message to me. I decided to check it out. I think that it is a great organization! To be able to share experiences is really helpful.