What was your diagnosis?
T-cell histiocyte rich diffuse large B-cell lymphoma. Stage: 4B with paraspinal mass and bone marrow involvement. (That is what’s written on my file—my huge-ass binder of a medical file)
Non-Hodgkin’s Lymphoma, in less fancy speak.
What schools have you attended?
Past: University of Toronto-New College.
Present: Chang School of Continuing Education at Ryerson University
What are your career goals?
Are: I have been working for a government agency for eight years, and the last four have been in Public Affairs.
Is: Not sure.
What is your occupation?
Your Cancer experience:
How did you find out you were sick? What led to your diagnosis?
Oh My! Where to begin (it’s a long-ish story).
Starting in 2007, I had been feeling sick and tired for a while. I went on a sick leave from work in 2008 or early 2009 after being diagnosed with a chronic pain condition. In hindsight, the 20/20 kind, it seems the pain and fatigue I was feeling was actually the first effects of my cancer getting nice and comfortable in the lovely home I was providing.
In April 2009, I was standing next to my computer and just happened to run my hands over my neck. To my surprise, there was a lump. My chiropractor had mentioned a swollen lymph node the previous month but I didn’t think much of it. Heck, I was always sick, why not another weird symptom? Just to make sure, I called TeleHealth Ontario and they told me to go see my GP, which I did the next day.
I got put on a course on antibiotics and was told to come back if nothing changed over the next month. Nothing did, so I went back, and they put me on a few referral lists. I was told to wait until the appointments manifested and come back if things changed. So I lived with it, for so long in fact, I name my bump “little buddy.”
In August, things started getting hard again and I was having tremendous difficulty at work again. I was tired beyond all human understanding and in pain throughout my body. I went to my GP and just broke down. I said there was something wrong and I couldn’t live this way anymore. She jumped to action and ran some tests.
Some of the blood tests came back a little more peculiar than normal so I was sent to a hematologist. I can still remember her calling me at work to tell me my numbers were off and that I needed to follow up. I didn’t think anything of it; how wrong I was. More tests were run but they seemed to think it was due to something rather banal.
The Friday before Thanksgiving I started getting pain in my chest and noticed I was having trouble breathing. I went to my GP who sent me to the emergency room. I spent the day in Mt. Sinai emergency in Toronto and started to suspect something was really wrong when everyone was treating me really nicely; they even got me a sandwich. Horrible sign. I was finally sent home when they ruled out a pulmonary embolism, but the doctor gave me an envelope of results to give to my doctor after the holiday weekend.
I busted that manila envelope open in the back of the cab home and read the results by myself. The results of the CT showed that I had a mass in my chest, along my spine, and a few in my neck. The last sentence chilled me: “Likely related to some form of cancer. Patient is being investigated for Lymphoma.” Talk about a hoof to the goods.
That weekend I spent Thanksgiving dinner complaining to my friends that “my tumours hurt!” Dark, but funny.
When my GP came to open her office Thursday morning, my fragile, scared, and pale face greeted her (a good blood count is for losers). She took me off work immediately and got people in line to do what needed to be done.
You’d be surprised how quickly things move after they find a whack of masses in your chest, eh? I pretty much knew from then that I had cancer but was hoping against hope.
Friday was a biopsy on “Little Buddy” which was awesome. And by awesome, I mean not awesome. I went in thinking it was a consult, but was greeted by a surgical tray and a cute little intern who happily asked me what I was in for. When I started crying and said cancer, he went grey and kindly put his hand on my shoulder. Anyway, they got underway, and by the time I smelled BBQ (they were cauterizing the wound, that juicy smell was me) I had to ask the doctor to stand back since I was going to barf on his shoes. Ativan was introduced, as was the calm, peaceful, post-panic attack euphoria I came to know, love, and expect.
Tuesday was my bone marrow biopsy. What can I say—it sucked. For anyone out there who has to get one, it was not the worst thing in the world, but it was not the way I would choose to spend a Tuesday morning.
A week later, the doctor called me at home at 8 p.m. to say I needed to come in before the clinic opened at 7:30 a.m. I called my Mom that night and told her what was happening, but she didn’t get it at first. She asked me what I was calling about, and I said, “Things aren’t good, you need to come.” She drove to Toronto that night.
So there I was, 7:30 a.m. in a dimly-lit hall at Toronto’s Women’s College Hospital , drinking a Timmie’s coffee, making small talk with my Mom, just 30-years-old, waiting to hear what was going on—waiting for my fate.
What year was it? What was your age at the time?
Diagnosis was at 8 a.m. October 27, 2009. I had just turned 30.
In which hospitals were you treated?
My initial testing and diagnosis was at Women’s College in Toronto. Then I had my chemo—both inpatient and outpatient—at Sunnybrook Hospital’s Odette Cancer Clinic in Toronto. That’s where I get my follow-ups.
At what level of education were you at diagnosis?
Completed University in 2004 – Hons. B.Sc. Physical Anthropology (Maj.), Christianity and Culture (Maj.), Biology (Min.).
What were your first thoughts when diagnosed?
The first thought was, “Thank God, I am sick!” followed closely by a glancing thought to a cute boy I had yet to gain the confidence to kiss.
It’s weird to tell you that I felt relieved, but I did. After wondering for so long and struggling with the perception that I was a lazy worker, lying, a complainer, or there was a mental issue, it felt good to be vindicated. Although, “In your face, I have cancer,” wasn’t really the snappy come back I had dreamed about.
The first thing I said out loud was, “At least I’ll get skinny” to which my hematologist took a deep breath and said, “Um, no…Most people gain weight on your chemo.” I think I said, “Are you effing joking me.” It was the first of many f-bombs dropped in front of my mom.
My mom asked what was going to happen and the doctor told us things were in a very precarious state and that I was to be admitted to jumpstart my chemo that day.
Then I stopped thinking and floated through the day in a haze. I was admitted to the Sunnybrook Inpatient Cancer Ward at 12 p.m. and they started my chemo at 3 p.m.
Before that day, I had never been admitted to a hospital or had an IV.
How did your family react?
There is no history of cancer in my family, or any major disease in anyone under 70. So to say they were shocked is like saying the Pope’s is a little Catholic. My family was also scared which was exacerbated by how fast they threw me into the hospital to start treatment.
I guess the main reaction was they came together to support me. My folks split about eight years ago and although they are on okay terms, we never got together as a whole family. That changed quickly and was an amazing outcome of my cancer. In fact, the Christmas I was in treatment, my mom and her family invited my dad to come and spend it with them. It was a tremendous blessing and comfort to me. They just hung up every problem they had on the wall and gave me all their support, love, and comfort; I am really lucky.
How did your friends react? Were you treated differently, or did things remain the same?
My friends rallied; it was unbelievable.
A friend would visit every single day I was in hospital. There was an email chain where people would give updates and fill out a visiting schedule. I have never felt so loved, so cradled in all my life.
People just wanted to be there for me, to be near me, to love me. And the depth of this care isn’t something you usually offer up to a peer in your 20s or 30s. The power of it still brings tears to my eyes. I often remarked that I felt like the luckiest girl ever during my treatment (mind you, I was on a whack of morphine for pain). But I did feel lucky.
I don’t know if things changed. I know many of my friendships grew deeper, and I actually made a few new good friends out of casual acquaintances. I guess the difference is I really feel and know how much those around me love me. I never really thought about it before. I took it for granted.
What did your treatment consist of?
I received the normal treatment for Non-Hodgkin’s Lymphoma which is R-CHOP, however, they also added in High Dose Methotrexate (MTX) to the mix.
Day 1: I would get my R-CHOP outpatient at Odette Cancer Clinic; seven hours of being pumped full of drugs. My brother said they put so much fluid in me, he thought I was going to explode.
Day 12: I would be admitted to the Sunnybrook Cancer Ward and get MTX intravenously as well as through a spinal tap. They called this prophylactic chemo. They thought the tumour on my spine was actually in my CNS and the next place “the Hodge” tended to travel was to the brain so they decided to take no chance and hit me hard
Day 28: Blood tests to see if I was strong enough to do it again.
I did this six times with a little break for a terrible respiratory infection that knocked me into hospital and made me bedridden for 10 days in February 2010.
- Hair. Within 12 days, my hair started falling out which sucked because I had just spent a whack of money dying it platinum blonde. But for me, more shocking was…ahem… um….all my hair fell out! They didn’t tell me to expect the hair “down there” to go as well. Turned out for the best, I didn’t have to worry about shaving for a year. Small consolation, I know, but it’s something.
- Fatigue. Oh my! I redefined so many words during my treatment and this was a big one. I never knew I could be so tired in all my life: wasted, unable to lift my arm or even walk to the bathroom.
- Weight Gain. Man, as I alluded to in my intro, I gained some weight. And by some, I mean a lot, like over 65 pounds. I got FAT, so fat that my skin split and hurt all the time. I gave up wearing pants and bought six pairs of pajama bottoms. I’m just now able to look at pictures from that time – I really felt embarrassed with how I looked. But keeping weight on meant I was strong and that’s why I took the chemo so well and was able to get back to life so quickly afteward. It didn’t seem like a blessing at the time, but it was.
- Physically I just felt sick. Most days it was like a medium flu; a few days out of the week it would feel like a really bad hangover crossed with the worst flu you have ever had. Honestly, I’m sure this is a coping mechanism, but I was really shocked that I didn’t feel like I was “suffering” during the chemo. It wasn’t fun, and I was sick, but not in the way I expected.
- Dreams and short-term memory. During treatment I was on so many medications that had the side effect of “numbing” me a little (I was using narcotics for pain management—using them appropriately—they just had a bonus feature) but I started having trouble remembering people who visited me and if things had actually happened, or I dreamed them. Not hallucinations, but reality was a bit hazy. I was also really frustrated because my mind was slow and just didn’t work the way I was used to. It would get really bad when they gave me the Methotrexate in my spine and it was a weird feeling to realize that my IQ was being affected. It was actually really frightening.
What is your current medical status?
REMISSION! Sorry, I feel compelled to write that beautiful, wonderful, spectacular, amazing, fantastic, unbelievable, awe-inspiring word in nothing less than the capitals letters it deserves.
I still go in every three months for a check-up with my fantastic oncologist (shout out to Dr. Rena Buckstein) and things are just a little better each time I go.
How is life different for you now post diagnosis?
I’m tired, always so tired. Still, not as tired as the year before cancer, or during treatment, but it hits me. I get barfy and sick really easily and my joints hurt a lot.
The biggest change is with my mind and the way it works. I have big trouble with my short-term memory and task ordering. Word finding is…is…is…umm…is…difficult. Even though I am just as successful in my job, it feels like it takes about 10 times the effort than before, and it’s exhausting. I don’t know if it’s getting better, but I am finding coping strategies and tremendous support from other cancer survivors facing this “cancer-related brain fog.”
I think this is where the hit has been most unexpected. I’m really sad sometimes and feel guilty about being sad. I nearly died, but didn’t, and that changes you. I’m different, and the world looks different. And it’s hard to change and all that goes along with it.
I guess I just always assumed I would get married and have kids. That would be the way I would make my impact on the world. I am not so sure anymore because of my fear of recurrence. And that really sucks.
I always feel just a little outside of what’s going on with my peer group. Maybe part of that is the little voice in the back of my head that whispers, “Hey, you had cancer.” Or maybe I feel disconnected because the world looks so different now. Maybe, just between you and me, I’m a little jealous of those who can move around blissfully ignorant of their own mortality. I feel really isolated because, as loving and wonderful as my friends are, they just don’t get it.
On the flip side, I have found friendship and connection with others that just weren’t possible before, particularly other cancer patients. And it’s really amazing because there is an element of openness and authenticity in these new friendships that I never knew.
What is/was the toughest part of your challenge?
Everything happening so fast after happening so slowly. Seriously, how do you wrap your mind around waking up to a normal day only to have it end in the hospital getting chemo? Whoosh!
I was really scared I was going to die, connecting to my mortality in a way that I never did before. The fear, the truly frightening nature of my predicament didn’t really hit me until the evening when I was wandering the halls of Sunnybrook dragging my IV pole. The prospect of dying wasn’t some vague fear, it was actually a very real and possible outcome to my illness with the stage and location of the spread. And I didn’t have anyone to talk to about that because people wanted me to keep positive and not think about it. I needed to talk about it because it was my reality. I’ve never truly been that frightened.
The tremendous physical change that I underwent. From losing my hair, my incredibly pudgy, swollen, chemo moon/chipmunk face, and weight gain, I didn’t recognize myself. As a young woman who can’t help but define herself by appearance, it was devastating.
Feeling lonely and trying to keep it together and be “Rah-Rah Cancer Girl” so others would be okay, but it wasn’t okay, but it was. Cancer draws out these paradoxes.
The friends I relied on during my treatment. Two have passed away in the last few months due to complications with their treatment. I feel their loss acutely and am a bit numb. I am grateful that I survived, always, but still struggling. I don’t think I realized until the past few months just how sick I was and how serious the disease and treatment were. I feel a bit dazed.
I feel isolated from friends and a little left behind. Everyone moved on in the past few years: new marriages, babies, and all the tremendous changes that usually happen in this age bracket, but I’m still in the exact same place I was two years ago. In fact, I’m a little behind. It’s really frustrating and hard to be patient.
I’m coming to a realization that my life will never go back to the way it was before and that I have to find a “new normal.” I didn’t expect that. I don’t know why I didn’t because it only goes to figure that something so profound will change everything, but I just held on to the hope that I would get through it, get over it, and go back to “normal.” Change sucks, but again, it’s a paradox. I see the potential for a happiness and a meaningful life that I didn’t conceive of before.
What was the best lesson you took away from your challenge?
Pudding is the best thing to eat if you are pretty sure you are going to barf it up. Also, the best barf position is sitting upright with the bucked at chin level. Hunched over the toilet is not where it’s at. I’m not even joking.
Health care is a basic human right. I have never been more proud and happy to be a Canadian.
Life is precious and short. There is not enough time to spend it on anger, regret, or guilt.
What really motivated you to keep going while you were sick?
The first night I was in hospital, I came across a clip from the Scrubs musical episode. It was one of the last songs, where a patient has just found out she has cancer and needs an operation that may or may not go well. She sings her fears which were so similar to mine, “What’s going to happen/What does the future hold/So many things that I put off/Assuming I’d have time, assuming I’d grow old/What’s going to happen/And will I be alive tomorrow/What’s going to happen…to me?” Then the doctors come in and say, “It’s going to be okay, that’s what’s going to happen.”
And that became my mantra. What’s going to happen? You’re going to be okay, that’s what’s going to happen. It’s cool where you find your lifeboats.
The other thing that was really important was connecting with other patients and survivors. Sharing tips and the dark things, feeling connected to others and being able to talk about the things only other cancer patients understand.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
I can’t believe I had cancer. It seems so surreal now that I’m back to life. And even though I will never forget, it’s not at the front of my mind anymore. My fear is fading and I’m starting to plan for the future. I never thought that would happen again.
I don’t want it to define me; cancer is not who I am, it is something that happened to me. But my recent history and subsequent self-definition is derived from the cancer experience since I am, truly, a survivor. So it’s a bit of a paradox.
As more time goes by it feels more and more like this was just a little speed bump on the road of life. That is just a part of a larger story, a greater work.
What are some preventative measures people can take to lower their risk of having an experience like yours?
Know thyself! If you feel a lump, keep on your doctor and get it checked out. Don’t second-guess yourself if you have weird symptoms. Run to your GP (leap over buildings if need be) if you have night sweats for more than a month. We have a great healthcare system but you still need to be an advocate for yourself.
Did you attend any support groups during your challenge?
I never went to any support groups until I went back to work when the emotional aftermath hit. I attend a weekly Wellness group at Gilda’s club in Toronto, and their monthly 20s and 30s club is great. I wish that I would have gone earlier, but never having been through something so traumatic, I didn’t know how important it was to connect with others. I would really recommend seeking out peer support for anyone, at any age, going through treatment.
How are you connected with Young Adult Cancer Canada?
I met up with people who had gone to one of the Retreats and then went to the website. The website is amazing and so helpful and I was able to go to the conference in Ottawa in November 2010. So meaningful and helpful.