Robin Harry

Robin Harry  - ProfileAge: 29

Hometown: Toronto, Canada

What was/is your diagnosis? Non-Hodgkin’s Lymphoma (diffuse large B-cell, primary mediastinal), Stage II.

What school did you attend? University of Toronto (2005 graduating class)

What is your career goal? I have a great job right now, but I would like to go back to school to be a physician’s assistant.

What is your occupation? Psychometrist & Research Assistant (Behavioural Neurology)

 

Your Cancer experience:

How did you find out you were sick? What led to your diagnosis?

In May 2011, I had some chest pain that I thought was just inflammation from an injury I had from the gym. It was the day of my choir’s big concert and I had to sing, so I thought it was that with some anxiety. I popped some Advil and went on with the show. A week later, I was at rehearsal on a Friday night, and the pain started again. But this time it was severe; it radiated from my chest all the way up my neck to my chin and over to my right shoulder. I couldn’t sing—I could barely breathe without being in pain. I didn’t go to the emergency room and still kept taking Advil (I’m that stubborn), but the pain stayed all weekend.

That Monday I went to see my doctor. He ordered an ECG and X-ray stat, and from the ECG I was diagnosed immediately with acute pericarditis. I was sent home with Advil to rest, and the pain subsided. I saw my doc a week later and he said I was fine, but God bless him, something made him look at my X-ray again that night. He called me back the next day and told me there was a mass in my chest, and he laid out the possibilities. A CT scan, bone marrow biopsy, and mediastinoscopy under general anesthetic followed in the next month, and I was formally diagnosed with Diffuse Large B-cell Lymphoma at the end of June.

What year was it? What was your age at the time?

2011. I was 28 when the symptoms and tests started, and was officially diagnosed a few days after I turned 29.

In which hospital are you being treated?

I’m being treated in Toronto at Sunnybrook Health Sciences Centre.

At what level of education were you at diagnosis?

I’ve completed my Honours Bachelor of Science.

What were your first thoughts when diagnosed?

My first thought was, “How on earth am I going to tell people this?” I was most nervous about how my friends and family would react when I gave them the news. I hate being the reason people are upset. I was quite calm and not really worried about myself; my medical oncologist was honest and told me the truth about my kind of cancer, but he also laid out the plan, so I felt alright with that.

How did your family react?

My immediate family took it hard, especially my younger brother with whom I’m closest to. They were all upset about it and a bit scared, but with varying degrees of transparency; there were tears, there was anger, there was silence, there were jokes. But I think my remaining positive has kept them reassured and calm after the initial shock.

How did your friends react? Were you treated differently, or did things remain the same?

They were all shocked by the news. My closest friends have been nothing but supportive and sensitive, while still treating me as the same person. I’m so blessed to have them, I’m sure it’s not easy for them. My coworkers have been amazing and have really been looking out for me; they have given me a stuffed Angry Bird for each chemo—I love it!

Lots of the others still don’t quite know what to say or how to approach me and get all awkward, but I understand. But a very special few are pretty much MIA. Oh well.

What did your treatment consist of?

My treatment first consists of six R-CHOP chemotherapy sessions, once every three weeks, as an outpatient. The sessions are six to seven hours long. After that, I’ll have 18 days of radiation. Then, we’ll see.

I haven’t had any nausea or vomiting. I have fatigue, and my hair fell out in clumps so I’m sporting the bald look these days. My sense of taste is completely warped (it’s worst the week after chemo), and I have hot flashes and night sweats due to the fertility treatment. My temperature regulation is also way off, and I’m constantly dehydrated. I’ve started to feel tingling and numbness in my fingers and toes.

What is your current medical status?

I’m in treatment, just about halfway through chemo.

How is life different for you now post diagnosis?

Physically, I get tired much more easily, and always want to eat, though food tastes disgusting. The fatigue takes its toll on whatever social life I had. I’m not able to do as much as I used to. Not to mention I have to avoid crowds because of neutropenia. Emotionally I’m still quite well and I’ve managed to stay positive and upbeat, though I have moments where I think, “This sucks!”  My faith and trust in God has never wavered, and it gives me peace.

What is the toughest part of your challenge?

Hmm…it’s hard to pick just one tough part. It’s difficult being limited and restricted. I’ve always been very self-sufficient, so it’s hard not being able to do things I want to do, like go to work after chemo, or hang out with my friends at late hours, or go anywhere with a crowd, avoiding crowded public transit. On a social level, I’m usually in good spirits and I have been handling this well, so the family members who are constantly crying and the trite encouragement from others don’t make sense to me. Trying to reassure others all the time is tiring.

What was the best lesson you took away from your challenge?

Facing something like cancer really shows you what stuff relationships are made of, and what they should be made of. I think I’ve learned a lot about myself and the people that surround me. Oh—that and bald headedness actually works for me (who knew?)!

What really motivates you to keep going?

I just keep thinking that I’m not done with life. There are so many things I want to do, so many places to see. I just tell myself that God’s not quite done with me! I’m determined to be a survival story; surely I can encourage someone.

What are your thoughts and feelings about your illness now?  How have they changed since before your diagnosis?

I think working at a hospital has given me a sense of realism about cancer, both before and after. I haven’t really been scared of it. I know what the odds are, and I’m doing what needs to be done to try to beat the odds.

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?

Oh my goodness, stop smoking and going to tanning salons! Cancer is not easy road, folks! It really pains me to see people putting themselves at risk for cancer when so many people are struggling to live through it.

Did you attend any support groups during your challenge?

Nope.

If you did not attend a support group, why?

I haven’t felt the need for one yet, and when I do need to talk or vent, my friends are my support group. They’ve been fantastic. I have also been keeping a blog that I find very cathartic (lymphomalowdown.blogspot.com). However, I did attend a Look Good Feel Better seminar, and it was really great being around other people who understand the experience. It’s so much more relaxed when another cancer patient asks you, “So, what kind of cancer do you have?” It’s almost a feeling of camaraderie!

How are you connected with Young Adult Cancer Canada?

I was just looking online to find people who had experiences similar to mine. There weren’t many people at my treatment site that looked my age, and the one young adult that I knew with cancer passed away years ago. I happened upon this site by chance!