A Long Overdue Update

It’s crazy when life gets away from you!! I realized that this blog had been collecting dust since I hadn’t updated in a looong time, so here is an update. I’m warning you now, it is going to be a long one…a lot had gone on in a month.

In the past, I have been privileged to have one of my postings published on a great patient site, Patient Commando. In late August, I was very fortunate to meet founder Zal Press and was thoroughly impressed with his passion for patient engagement, storytelling and advocacy. I hope he was as impressed by me as I was of him and his organization. Patient Commando is a platform for patient engagement and empowerment by sharing stories, through prose, video and art. They are dedicated to “Lifting the veil of silence that so often accompanies the onset of illness.” Contributors come from across the spectrum from health care professionals, authors, and of course patients. In addition to providing a voice for the patient experience, they are committed to helping patients become better informed and better equipped in how to manage their healthcare. I am truly honoured to work with them, and look forward to future collaborations.

Visit Patient Commando at http://patientcommando.com

In the first week of September, I had the unique opportunity to attend the Global Leaders Talk Survivorship event in Montreal as part of the World Cancer Congress thanks to my friends at CancerFightClub. As a CFC blogger, I was offered an opportunity to attend a panel discussion hosted by Doug Ullman (CEO of Livestrong), and consisted of a number of leaders in cancer care and advocacy, including Lance Armstrong and Princess Dina Mired of Jordan. The evening was very inspiring as a number of delegates from UICC and the conference attended the event. It was also great that much of the discussion had to do with issues facing Young Adult survivors, one of our community members even had her question answered (way to go Robin!). Alas, the discussion was over far too quickly, but afterwards, a few of us were fortunate to be at the right place at the right time and were able to meet Lance and Doug. Both of whom are incredibly inspiring and passionate individuals. In addition to all this excitement, I was able to connect with friends from the Ottawa and Montreal area. I am so grateful to Adam and Dawn at CFC, and to CancerFightClub for all that they are doing for the Young Adult community!

Visit CancerFightClub at http://www.cancerfightclub.com

I have also been interviewed for an upcoming feature in Cure magazine. I can’t say too much about it right now and don’t have all the details on when it will be published, but when I do, you’ll know too. It’s pretty bizarre having photo shoots at my house, but this is where life is taking me.

Just today, I had a Video posted to http://www.facebook.com/IsMyCancerDifferent (Check it out). As a Founding blogger, I was asked to help IsMyCancerDifferent celebrate their one year anniversary by sharing my story on how targeted treatment is working for me. Naturally, I was honoured to help promote and celebrate this incredible site. I honestly don’t think I’d be here if I didn’t push for treatment and take an active role in seeking out options for myself. Thanks to advancements in genetic analysis, research into targeted treatments, and organizations like IsMyCancerDifferent, patients like me are benefiting and thriving. As if that wasn’t amazing enough, they featured our organization on the site too, how awesome!! Thank you so much and Happy One Year Anniversary, here is to many more!!

Phew, I think that’s about it! Next week, I’ll be taking part in a First Descents Surf Camp; I’m super stoked, so I imagine the next post will be about the hijinks that ensue. Until then, keep well!!

Thanks for reading!

AM

Is My Cancer Different?

I recently subscribed to @ismycancerdiff on Twitter and discovered a great resource for those dealing with a cancer diagnosis, whether a new diagnosis, dealing with a prolonged battle, or dealing with recurrence.  Http://www.ismycancerdifferent.com has the goal of sharing their message with 1,000,000 people in 1,000,000 minutes.

So what is their message?

Simple, your Cancer is different; you are not the same as someone else and by being armed with the right questions and information, your treatment can be tailored to YOU.

Advancement in the understanding of what causes cancer and what makes one person’s cancer different from another by using molecular-level testing allows your medical team to determine the best course of action for you. Whether it is clinical trials that match your diagnosis or allowing you to avoid unnecessary treatments that prove ineffective in stopping your cancer, having this information can help YOU make the best decision about YOUR treatment, because yes, your cancer is different.

I wish I had known about http://www.ismycancerdifferent.com when I experienced my recurrence in May of 2011, perhaps even before then, because maybe I could have avoided the anxiety of thinking my cancer was a death sentance. Luckily I found a clinical trial that tested my tumor and we discovered that my cancer resulted from a mutation found in some lung cancers. I am now on a drug that inhibits this mutation and allows me to live my life with quality and hope. Before this however, I was told that I was inoperable, not a candidate for radiation, and chemotherapy wasn’t an option until I was sicker. Not very encouraging!! I’ve been in this trial for over nine months, and I owe my life to the Doctor who recommended testing my tumor. By sharing my story and sharing this link, I hope that someone can avoid the stress and anxiety that comes from making decisions about their cancer care.

For more information, please go to                         http://www.ismycancerdifferent.com