Sadly, Kim passed away on May 10, 2017 surrounded by her loving family. Kim was an active YACC member and had such a positive presence. She was well spoken, kind, funny, and bright. She had opinions and was not afraid to express them. She was considerate and caring towards those she loved, but also towards people she never met but simply wanted to support. She was “cool” — I know this sounds silly, but she was a cool chick! We miss her and will remember her, always.
Name: Kim O’Brien
Hometown: Ottawa, ON
What is your diagnosis? Cutaneous T-cell lymphoma
What is your career goal?
I am an educator for an after-school program. Originally I hoped for a long career in the field of Early Childhood Education (ECE) but in light of to my complicated health situation I sometimes have trouble working consistently and I’ve started to consider other possibilities. I see myself doing a bunch of little things, finding ways to make money while still enjoying life: selling crafts and homemade creations, becoming a yoga teacher (for kids) would be great, dog walking, getting involved with cancer programs for kids, fundraising, writing, etc. I am no longer concerned with a “career,” just being able to make enough money to live a happy and fulfilling life will be enough for me.
Your cancer experience:
10 years before a diagnosis
Cutaneous T-cell lymphoma is a rare blood cancer that attacks the skin, causing rashes and tumours and stuff. The rashes started small when I was about 12 years old, but a few biopsies didn’t amount to anything, and never in a million years does “cancer” cross a kid’s mind, so I decided I was more preoccupied with being a teenager than dealing with it.
I was 21 years old when I finally decided on my own to talk to my family doctor about my skin. He sent me to a specialist and in 2008, somewhere around my 22nd birthday (before or after, I don’t remember), I was diagnosed with Mycosis Fungoïdes (MF), a type of Cutaneous T-cell Lymphoma. Because the nature of my particular condition is so different from what people typically witness as “cancer,” it took me a while before the diagnosis really sunk in.
“Cancer” diagnosis, take 1
The first time I was told I have cancer it didn’t really feel like a cancer diagnosis. I didn’t really talk about it with anyone and didn’t think much of it. In 2008, I was told my cancer was so indolent or so slow-growing that it was more like a chronic skin problem and that “most people die of something else.” The doctors didn’t look too concerned so we chose UVB phototherapy treatment because it’s non-invasive and often effective in early stages of MF.
“Cancer” diagnosis, take 2
In 2009, a year later, my rashes were getting worse and the phototherapy treatment wasn’t working anymore. I had a meeting with my medical team and they wanted me to try a different treatment (PUVA-bath), but I was resisting the change. I wasn’t catching on that the doctors were actually worried about me. I was just holding on to the notion that it’s supposed to be a non-aggressive disease and I was supposed to be able to live a long life despite the annoying and aesthetically unpleasant rashes. Why go through all this trouble for a stupid rash?
I was so argumentative my nurse lost her patience with me and said, “This could kill you if you don’t deal with it. You. Could. Die.”
I can’t explain it, but I was just mad at her for getting in my face. I did agree to change the treatment though.
“Cancer” diagnosis, take 3
A few months later, I was asked to let a large group of dermatologists “check me out” because my case was so unusual. The experience was unnerving with doctors coming in and out of my room, my dignity barely intact, and it finally started to feel… like cancer. A few weeks later I was sent for an ultrasound to make sure the disease hadn’t spread to my internal organs. As I lay there, being scanned for tumors, the diagnosis finally sunk in. I freaked out, called my mom to pick me up, and finally cried about it.
What did your treatment consist of?
My treatment plan can be summed up like this: cancer finds a way to adapt and I constantly need to switch it up. I feel like I am fighting The Borg (Star Trek anyone?). The breakdown of the last seven years looks like this:
- September 2008-2009: Phototherapy (UVB & PUVA-bath)
- January to October 2010: IV chemotherapy (CHOP; Gemcitabine) and some radiation
- June to August 2011: Oral chemotherapy
- November 2011: Head-to-toe skin irradiation
- February 2012: Allogenic stem cell transplant (chemo, full-body radiation, and stem cell transplant)
- February 2013-now: UVB phototherapy (I bought a machine to have treatment at home)
- December 2014-March 2015: Gemcitabine chemotherapy and phototherapy in between
- … Any suggestions?
What is your current medical status?
Chronic, relatively stable condition, as long as we keep exploring options and never stop trying to find what works best. To be honest, it took me so long to process my diagnosis and my medical status is so ambiguous that sometimes I still think of it as just a “stupid rash” It’s ridiculous.
What is the toughest part of your challenge?
The toughest part of all this is accepting that my condition is long-lasting and learning to co-exist with cancer. I am ambitious and passionate, I dream big, I can be impetuous and I don’t like feeling limited by any circumstances. I am grateful for the quality of life I can still have and yet at the same time I am constantly required to compromise and hold back and it can be extremely frustrating.
What was the best lesson you took away from your challenge?
The best lesson I take away from all this is perspective. I have a bucket list — a real list I keep by my bed and review every once in a while — and I am constantly on the lookout for opportunities to add things to it as well as cross things off. Hunter S. Thompson says it best: “Life should not be a journey to the grave with the intention of a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a ride!”
What really motivates you to keep going while you are sick?
Love. I am surrounded by it and it sustains me in my darkest hours. My husband, my fur-babies (dog and two cats), our families, our friends, my colleagues, and the children I have grown so fond of at work. I have a lot to live for and I am profoundly aware of how blessed I am to have the support system I have.
I’ve never joined a support group until now. To be entirely honest, opening up to people about the real stuff has never been easy for me. I am terrified of being vulnerable in front of others and being judged or rejected for it. However, I have had a growing need to feel less alone, to meet people “like me” who can relate to some of the things I want and need to talk about sometimes. So I joined YACC and I am discovering that I am not alone, I am making friends, and that although everyone’s experience is different, it feels incredibly liberating to have conversations that flow between “normal” life stuff and “cancer” stuff without getting weird.
Are you interested in helping others facing cancer challenges? If so please let us know how you can be contacted.
If someone reads my profile and wants to contact me, email is the best way to start.
Email firstname.lastname@example.org and we’ll connect you with Kim.