Hometown: Ottawa, Ontario
What was your diagnosis? Diffuse Large B-Cell Non-Hodgkin’s Lymphoma stage 2B.
What school did/do you attend? Carleton University
What is/are your career goal(s)?
This is a hard question to answer. Cancer has changed so much in my life that I’ve had to re-assess a lot of my goals and they are currently all over the place.
What is/was your occupation?
At the time of my diagnosis I was working full-time as a class action claims evaluator from 8 a.m to 4 p.m. During the evenings, from 5 p.m. to 10 p.m., I was working as a high school tutor (specializing in math and sciences) and as a freelance industrial designer/graphic designer.
Your Cancer experience:
How did you find out you were sick? What led to your diagnosis?
A few weeks leading up to my diagnosis I had been experiencing lower back pain on my left side. It would come and go, so I had assumed that I had been sleeping in a strange position or had just tweaked my back. Around the end of July, the pain started to become more frequent and constant but I still ignored it and figured that it would go away. I started doing online research to try to figure out what it could be. The best thing I could come up with is that it was likely a kidney stone and that it would pass on its own eventually.
On Sunday, July 25, I had a really bad night and was not able to sleep. I was having night sweats and cold chills all throughout the night. In total, I probably got 20 minutes of sleep. I ended up going to work the next day feeling like a zombie. Once at work, the pain in my back was so bad that I wasn’t able to sit up properly in my chair. I left work early that day and went straight to a walk-in clinic close to my house.
At the walk-in clinic, I told the doctor about the pain in my back and said that I thought it might be a kidney stone. He did a urine test and said that I had trace amounts of blood in my urine. He made an appointment for me to get an ultrasound that Friday.
At the ultrasound, I knew that there might be something going on when the technician called in another doctor to take a look. They never told me anything but I did overhear them say, “That’s interesting.” Later that afternoon, I received a call from the doctor at the walk-in clinic saying that I needed to make an appointment with my family doctor ASAP and that he would forward the ultrasound results to my family doctor immediately. At no point was I ever told why it was so urgent.
Unfortunately, it was a long weekend, so I was not able to get an appointment right away. I spent the whole weekend wondering what was wrong. I was able to get an appointment with my family doctor on Wednesday, August 4. He brought me in before his office opened because that was the only time he could fit me in on such short notice. It was at that time that he told me that the ultrasound looked like I had lymphoma.
I was sent for a bunch of blood tests and X-rays and then I went to work. Within five minutes of getting to my office, I was called to go to the emergency room at the Ottawa Civic Hospital to meet with a blood specialist. I stayed in the hospital emergency area for 14 hours that day and underwent more blood tests and scans. By the end of the day, they were able to confirm that it was definitely lymphoma and that I had two golf-ball sized tumors in my spleen. Those tumors were the reason for my back pain since they were causing a tremendous amount of pressure in that area. The next morning I underwent a biopsy.
What year was it? What was your age at the time?
I was diagnosed on August 4, 2010. I was 30.
In which hospitals were you treated?
I was diagnosed at the Ottawa Civic Hospital. Some scans were done at the Ottawa Riverside Hospital. All of my treatments and my follow-ups have been at the Ottawa General Hospital Cancer Centre.
At what level of education were you at diagnosis?
I had completed my university degree (Bachelor of Industrial Design with Honors; Psychology).
What were your first thoughts when diagnosed?
When the doctor first told me that my ultrasound looked like it was lymphoma, I wasn’t really sure what he was talking about. I didn’t know what lymphoma was, and I was more relieved that it wasn’t a kidney stone. It wasn’t until he started going into more detail about lymphoma that my mind went blank and I didn’t really hear anything else he said.
How did your family react?
My parents both came with me to the doctor’s office when I found out that I had lymphoma. I think we all were shocked, and there seemed to be a sense of both calm and urgency. I didn’t see how the rest of my family reacted when they found out since it was my parents who told them. Everybody came together and they were extremely supportive the entire time.
How did your friends react?
I did not tell my friends right away. Once I decided to tell them, I sent a mass email to a handful of friends explaining what was going on with me. I only emailed those who I thought would be supportive. I told them not to tell anyone else because I didn’t want everyone to know that I had cancer.
Some of my friends were very supportive throughout my whole treatment and would email me to find out how I was feeling or call me and chat with me for a few minutes. Some I never heard from at all during my entire treatment.
What did your treatment consist of?
Treatment consisted of six rounds of R-CHOP chemotherapy (one every three weeks), each lasting roughly six to seven hours at the cancer centre of the Ottawa General Hospital. I also received two maintenance rounds after the initial six were completed. They were also considering radiation therapy, but luckily the chemotherapy worked well so I did not need it.
My hair started falling out after the first chemotherapy treatment. I remember sitting at my desk, running my hand through my hair and having hair fall out onto the desk. It was at that point I decided that I would shave my head because it was extremely annoying to have hair constantly falling out wherever I went (especially in the shower—that was pretty disgusting).
After each chemotherapy treatment I felt horrible. As soon as I got home, I would try to go to sleep but the nausea was unbearable. I had extreme nausea and vomiting for two to three days. I was on Prednisone for five days after each treatment and that kept me awake, so I had to force myself to try to sleep since that was the only way I could get through the nausea (the medication I had for it did not really help at all even though they gave me stronger medication each time).
After those first few days, the nausea and vomiting stopped but I was still extremely weak and tired. I did not have a lot of energy and slept a lot and I didn’t have much of an appetite either. It wasn’t until the end of the second week after chemotherapy that I would start to feel better, have more energy, have more appetite, and be able to do things.
I developed an extremely heightened sense of smell. The day after my very first chemotherapy session, my mom brought me some unsalted soup crackers to munch on. Normally, I would say these crackers have no smell at all, but I remember that as soon as she walked through the door, all I could smell were the crackers and it was horrible. I’m sure my family thought I was crazy. The crackers had to leave the room. I also noticed this during my second chemotherapy treatment when they were giving me the IV saline solution to hydrate me before starting the actual chemotherapy. I almost gagged and threw up because the odor of the saline solution was so strong. The nurse was worried and even told me that the saline solution has no odor. I had to kindly inform her that she was wrong. I had to plug my nose every time I received it.
I also developed tingly and numbing sensations in my fingers and toes (a side effect of one of the chemotherapy drugs – Oncovin). It started in just the tips of my fingers but gradually it spread into my whole finger. Using my hands was quite difficult because it was hard to feel anything. I had to pay extra attention when trying to pick things up. Using a pen was out of the question. I also had to make sure water was never too hot or too cold using my wrist because it was harder to gauge temperature while my fingers were all numb.
Emotionally, my attitude during the entire treatment process was “Bring it on.” I would psych myself up for each chemotherapy treatment, knowing that I would be one step closer to being finished and that meant one step closer to resuming my normal life. The only time that I wavered from this was at the third chemotherapy treatment when my blood counts were low. The doctor on call said it was not safe to go on with chemotherapy that day and that I would have to wait a week so that my blood counts could recover a little more. Hearing that was devastating. I wanted everything to go smoothly and be over with as soon as possible. Knowing that everything would now be delayed another week meant that I was one week further from getting back to a normal life.
I was put on Neupogen to help increase my blood counts. I had to self-inject myself five times (once a day) leading up to each chemotherapy session. This is something that I wish I had known about before I started chemotherapy. It came as quite a shock when they told me that I would have to stab myself in the stomach with a gigantic needle!
In hindsight, a one week delay isn’t that bad. It could have been much worse. But, at the time, it was the worst news I could hear and it was emotionally devastating.
What is your current medical status? I have been in remission since March 16, 2011 but still go back for regular appointments and blood tests every two months.
How is life different for you now post diagnosis?
Before I was diagnosed, I was working a full time office job as well as working evenings as a high school math and science tutor. I was working from 8 a.m. until 10 p.m. on most weekdays.
After I was told that I was in remission, I jumped right back into my old routine. I started working the following week and did not really give myself any time to “recover” from all the treatments I had just gone through. I got extremely tired after a full day of work and I had to stop tutoring in the evenings. I kept working my office job, but four months later my contract was finished and it wasn’t renewed. Since then, I have been using the time off to give myself time to process what I’ve been through, start my recovery journey and really figure out what my next steps will be personally and career-wise.
Physically, I feel fine. I don’t have any external scars or marks. My veins in both arms are pretty bad now. It is a lot more difficult now to find a vein when I go in for my routine blood tests than it used to be. Otherwise, I am back to the same physical shape that I was in before I was diagnosed.
Emotionally, my mind races around like a roller coaster. Some days I feel perfectly fine. On other days, I start to think back on my whole cancer journey and over-analyze things (the “what ifs” and the “why didn’t I do this”) and that makes me angry at myself and sometimes a little depressed.
Socially, as of right now, only the handful of friends that I had emailed knows about my cancer. I still have not told anyone else what I have gone through. It makes things a little awkward when talking to them since I have to be more careful with what I say. I’m in no way ashamed of what I’ve been through nor am I trying to keep the whole thing a secret, but I just don’t know how people will react. There were a few people whom I did tell and they never said a single thing to me the entire time—never an email, phone call, anything. So that’s where the apprehension is of letting everyone know.
What was the toughest part of your challenge?
The toughest part was definitely trying to stay positive. I didn’t want to show the people around me that I was hurting or not feeling well, so I would convince myself that I felt fine. It was really hard to always stay positive and tell people that I was great and feeling better even though inside I was feeling horrible and had the “what if this doesn’t work” thoughts running through my head.
What was the best lesson you took away from your challenge?
The best lesson that I took away from all this is, and it will sound cliché, don’t sweat the small stuff.
I would see people on Facebook updating their statuses with the most ridiculous complaints like “___ didn’t have the shirt in my size” or “Why do I have so much work to do today” or “My printer is being stupid. FML.” It was moments like those that made me extremely angry while I was in treatments since the only thing I was really able to do was sleep because I was so tired all the time.
Now, on occasion, I am still guilty of ridiculous complaints but I usually catch myself and realize how dumb I am being about something so trivial.
What really motivated you to keep going while you were sick?
While I was sick, I made a lot of travel plans. That’s what kept me motivated the entire time. I made maps, lists of things to do and see, travel itineraries, and spreadsheets detailing where I would stay and what I would do each day. I’ve organized enough two-week trips for the next 10 years.
What are your thoughts and feelings about your illness now?
I never really thought that much about cancer before being diagnosed. It has definitely changed my life. It has changed my outlook and perspective on a lot of things and has forced me to grow in ways that are really hard to explain.
I worry about recurrence more than I probably should. I try to monitor and keep track of any ache or pain I might get. Thinking about it too much can really start to play games with my mind so I try to keep myself busy with other things most of the time.
While I was on treatments, it often felt like my world had stopped and everyone around me was still moving quickly, but in reality, when I look back on that time, I now feel like I was the one speeding ahead while everyone else was moving slowly. I feel like I’ve gained so much more knowledge and life experience in such a short period of time than everyone else.
My spin on the whole experience is that people should be envious of me for the life experience and knowledge I have gained rather than feel sorry for me for having had cancer.
What are some preventative measures that people can take to lower their risk of having an experience like yours?
The most important thing is to listen to your body. Your body will let you know when there is something wrong. Do not ignore what your body is trying to tell you.
Did you attend any support groups during your challenge?
I didn’t go to any support groups during my treatment. I did attend one support group run by the Psychosocial Oncology program through the Ottawa General Hospital Cancer Centre soon after I was finished my treatments. When I attended, that specific support group was just starting out and it was a small group of six of us (of which I was the only guy). There was a different discussion topic each week about which we would talk and share our experience and feelings. There were some things I found helpful and other things that weren’t (mostly due to the skewed gender representation in the group). The most beneficial part was being able to connect with some other young adults who’d been through similar experiences.
How are you connected with Young Adult Cancer Canada?
I found out about YACC through one of the other young adults in the support group. They told me about the YACC conference that was happening in Ottawa in November 2011. I had missed the deadline but applied to go anyway and was put on the wait-list. Luckily, a spot opened up and I was able to go. It was an amazing experience that I didn’t know I needed.