Two days ago, I was diagnosed with cancer. It's highly treatable, and I want to talk about it.

I was diagnosed with a rare, and highly treatable form of cancer, Dermatofibrosarcoma Protuberans. It was the biggest surprise of my life when it happened, but I'm feeling really good and positive about it and about my treatment options and success rate for being cancer free. Writing and sharing helps me process, so here we go!

March 3rd, 2016 - The day I was diagnosed.

March 3rd, 2016 - The day I was diagnosed.

The Diagnosis

I came back to Ottawa from NYC after moving after the New Year for a follow-up with my doctor on some thyroid issues I've been having. What I was told next was totally out of left field and has made the past 48-hours the most surreal of my life.

In December, I had two tumours removed from my right calf and upper thigh. Both were said to be benign. They were removed in a tiny room in a walk-in-clinic in Ottawa, and the surgeon was wearing jeans and let me and Mitch record him dissecting the tumours when they came out. It was the coolest thing. What I remember distinctly, is when we examined the second tumour (from my upper thigh), he said it had two parts to it, and as we cut it open he told me what he saw was extremely rare. 'One in a million people have this,' he said, 'It's a dermatofibroma'.

'Is it cancer?' I asked.

 'No,' he said, 'but we'll send it for a biopsy anyways'.

Then began a whirlwind period of time. I went back to Alberta for the holidays, showed off my cool scars and gross video to my family, had my cousin-sister remove my stitches in the guest bedroom of my brother's house, and then I came back to Ottawa, and moved my life to New York City to embark on year two of working on our start-up and planning to crush everything that lays ahead for Dream, Girl and our movement.

**Cue montage of hardworking ladies working their assess off to accomplish their biggest dreams in NYC... **

...then yesterday, as I sat on the crinkly paper on the bed in the examination room waiting for a requisition for blood work, I asked the doctor about a letter I had received.

'It said some results are in that need to be discussed, but I'm not sure what they'd be from,' I said forgetting about December's biopsy.

The doctor looked it up in his tablet, and he mumbled, 'No one has talked to you about this yet? These results came back in January.'

'No, I just got the letter yesterday.' I said. 

He started explaining how I needed to see a specialist, and he would put the referral in. It was one of my tumours from December. It came back and it's something really rare.

'Dermatofibrosarcoma Protuberans,' he said. 

Sarcoma... I knew that was cancer, and so I asked as the shock set in...

'It's cancer?'

'Yes, it's cancer. It's very rare. One in a million people are diagnosed with this annually.'

I felt the blood rush to my head, and I said so naively, 'I feel overwhelmed, really overwhelmed. Is that normal?'

He gave an uncomfortable, but sympathetic laugh. 'Yes, that is very normal, are you okay?'

I could feel my adrenaline pumping, I could feel the fear creeping in, and I did all that I could to stay as present and aware as possible. To hold onto every word as tears started rolling down my cheeks...

'They didn't get all of it during the first removal...'

'We will take care of you, don't worry...'

'You will hear back soon...'

'Do you need anything else?...'

I didn't want to cry anymore in that room beyond my first set of tears. I breathed deeply and asked for my blood work requisition for my thyroid hormones, and I walked out.

I got in my car, and drove to somewhere familiar, the parking lot by my house. I called Mitch, he was at work and couldn't answer. I called my brother, and I let myself finally react.

'Vickram Bhaji... I have cancer.'

A luminary (lit in honour of someone who has had cancer) from the 2010 Relay for Life.

A luminary (lit in honour of someone who has had cancer) from the 2010 Relay for Life.

There are going to be a lot of people who are surprised to hear me talk about my diagnosis so soon after finding out about it. But writing and sharing are my form of expression and are my way of processing big parts of my life. So I appreciate the time each of you are taking to hear and feel my story. There is no shame in this diagnosis, and I want to shine a bright light on the fear around it. I will fight this with every ounce of myself.

I admit, I have very little information on my specific prognosis. Here are the facts I've learned about online, so you my dear reader, are as informed as I am.

Dermatofibrosarcoma Protuberans:

  • Is a very rare form of cancer. It emerges at the top of the skin and is often thought to be a pimple or cyst. It grows very slowly, but when it does, it can grow something like a root system that can penetrate muscle and bone. 
  • With Moh's surgery there is a 98% (!!!!!!!!) chance of removing all the cancer cells and I most likely will not need chemo or radiation. In December they took a big chunk out, but the biopsy indicated that there is still cancer present.
  • I likely only need to see a dermatologist to have it removed in its entirety if it has not penetrated muscle and bone. If it has, I will have a team of specialists helping me figure this out.
  • At this point, I know nothing definitively and am filling in as many blanks as possible with the help of very informed friends and family until I get in for my next appointment.

So why am I sharing this? My history with cancer and what I've learned so far:

Such a fun day in 2007!

Such a fun day in 2007!

My first journal entry in 6th grade was about finding out that a young girl at our school was diagnosed with cancer. I was devastated and felt so sad for her and her family, and expressed myself as eloquently as a 12-year-old could. A few years later I started selling daffodils for the Canadian Cancer Society in the atrium of my high school. I then led the 'Think Pink' fundraiser at my school in 11th and 12th grades, and we raised over $10, 000 for the Breast Cancer Foundation and had our whole male faculty wear pink dresses for a day. We made the front page of the local paper!

A year later, I found my first tumour while I was away at university, and went numb. I was doing a breast exam in my dorm room after a shower, just like the women I worked with the year before at the Breast Cancer Foundation advised me to do, and there it was. I had to have my first biopsy at 18, the first of many. 

The survivors who joined us in 2012. Such a powerful night.

The survivors who joined us in 2012. Such a powerful night.

I felt such a lack of support on campus outside of my best friends Heather and Becca who had run the Relay for Life at their high school - a 12-hour overnight fundraiser for the Canadian Cancer Society. It turned out my tumour wasn't cancerous (it was a fibroadenoma, I now have many in my body - benign fibrous growths that pop up every few years and that I monitor), but I had a fire to do something for those affected by cancer on our campus.

So, two years later, we decided to start the Relay for Life at Carleton University. In six years we have raised close to half a million dollars. The last Relay I co-chaired was four years ago this week, the 2016 event is this coming weekend.

One of my favourite nights! The 2012 Relay for Life!

We did it so there could be a community on our campus to talk about these supremely shocking and scary experiences; walking home alone from the doctor's office when you find a tumour, or hearing about a close friend or family member being diagnosed. Cancer thrives on our fear, and sharing and speaking about it, I believe, eviscerates that fear entirely.

After so many years of activism, I feel supremely prepared to face this. But it doesn't make it any less hard, scary, or shocking. 

So here's what I've learned in two days about why this is so important to share and talk about and to not let fester inside you:

  1. Get yourself checked out - it's actually better on the other side!

    • In the words of a sage man I know, 'Play with your boobs and balls folks, get that shit checked.' We get so scared of being diagnosed, but the longer we wait on something the worse it can get. It's not worth it to wait. I am so grateful we have found this cancer and that I get to give it all I've got in saying syonara to it! And truly, waiting is absolutely the hardest part, I now have waited to hear that I both do not, and now do, have cancer. It's better to work through the fear and find out, I promise.
  2. It doesn't matter how good the prognosis is, this is still scary as shit. So I shared it. 

    • I have a very big family, and I made the rounds of calls. I called and messaged my best friends. I had my moments of breakdown. I had my moments of research. I had my moments of thinking about the worst. Most of the moments were of positivity, strength, and sticking to the facts. But CANCER is a scary f***ing word. Also, I know so little about my situation and too much research can absolutely make my brain go down the gutter in the worst ways. So knowledge is power to a point. I let myself read Wikipedia, and WebMD, and a few stories from survivors. Nothing else. Mitch's cuddles helped big time.
  3. Although sharing it is hard, you never know who is working on your behalf.

    • A great benefit of being Indian is that so many of my family members work in the health system. So I have a number of people I love and trust, asking questions and sharing information from colleagues who are most well versed to share it. This is absolutely a privilege I don't take lightly, but one I am eternally grateful for. Overall, the vibe was that this is a 'good' cancer to have, but that I must aggressively seek treatment fast. If there's a remainder of cells so close to my lymph nodes we gotta be as proactive as possible. As a comedic pause, one of my aunt's thought I got this cancer from sun bathing in Mexico a few weeks ago since the growth was on my upper thigh. NOT SO (they don't know why this happens), but so cute. 
  4. I am so grateful for the massive army I have behind me. I hope your support system is strong, or can be made strong.

    • There has been no moment in the past 48-hours that I have felt alone. Every phone call, every text, I am blown away by the support system I have. I will lean, and hard, on everyone. The 'we' statements coming in bring me to tears:
      • 'We've got this.'
      • 'We're going to fight this.'
      • 'We're going to come out on top.'
  5. This cancer will thrive on my fear. So I will continue to shine a light on it.

    • Today, I worked. I stuck to my routine for sanity and progress' sake. Moving forward, I will listen to my body more. I will feel all the feels. I will keep meditating. I will continue down my path of learning how to better nourish my body. I will dive deep into my yoga practice. I will sleep. I will not let this random confused set of cells take up unnecessary emotional real estate in my brain. I will write about it, as often as I need, and I will fight. Hard.

So now what?

Rocking out at Relay 2011 with the Glee Club! 

Rocking out at Relay 2011 with the Glee Club! 

  1. I see the experts.
  2. They help me figure this out.
  3. I will share whatever I feel like sharing with no expectations.
  4. I will continue living my life in NYC and Ottawa as I get treated, and we will go on to launch our film in June! 
  5. I will survive, and be an advocate for conversations around cancer.

There's a lot I want to look into now. My childhood best friend is just emerging from a battle with thyroid cancer. We are both 26. Societally, and biologically something is shifting. The rates of cancer are exponentially increasing, and that's not okay. Prevention is key, but I feel like we have massive systems continuously working against us. But this is a conversation for another time.

All this to say. I feel good. I feel strong. I feel supported. We got this folks.

If you have any questions, or stories to shares, please do! This is a very intense situation and I am happy to create a small pocket of space for us to have a conversation about this (the comments below, Facebook, or my inbox are a good place we can start).

Until next time,

- Koko B. Ware (look it up, thanks for the nickname Meenu Didi)