These Are My Scars

Please help a fellow Young Adult Cancer patient in need. Lynsey...

Mon, 18 Feb 2013 21:41:38 -0500

Please help a fellow Young Adult Cancer patient in need. Lynsey has just found out her tumor is growing and is looking into treatment options that are out of province and in the US. I ask you to help by collecting your unused pennies and donate them to her treatment fund.

Ups and Downs

Thu, 31 Jan 2013 00:15:13 -0500

Life has been quite a rollercoaster in the last few months, hence my notable absence from the Blog, writing, and working on These Are My Scars. November opened with an incredible opportunity to participate in a patient panel for Lung Cancer Canada. On November 1 LLC presented a national survey on the opinions of Canadians and lung cancer to kick off lung cancer awareness month (Yes November is Lung Cancer Awareness month). That evening I was asked to be keynote speaker at LCC’S second annual gala. I can’t tell you how honoured and humbled I am to have been asked to be part of these amazing events. It is amazing how sharing your story can touch so many people. From there, I went directly to Young Adult Cancer Canada’s annual conference. Four days of connecting and re-connecting with amazing young adults from all across Canada. I can’t even begin to tell you how wonderful it is to spend time with others who have shared an experience like yours, YACC makes that happen and I am so thankful to them for it!

The second week of November brought me to Ottawa to celebrate the marriage of our very own Naomi and the love of her life Palmer. It was such a privilege to be part of their union and Naomi looked radiant and just beamed all day. Also around this time, I became caregiver to my mom who fell ill with a mystery illness. I did my best (all be it a feeble attempt) in taking care of well, everything! We went to test after test and waited on pins and needles for a diagnosis. Because it involved her breathing and lung function I was immediately anxious and terrified of what it could be. Thankfully in December we got a diagnosis and she is being successfully treated and well on her way back to health!

At the end of November, I was asked to speak and present at a patient conference in Halifax. What a wonderful opportunity to share my story and perhaps help patients navigate though their diagnosis. Halifax is a great city, despite presenting, I had enough time to explore, eat, and even catch up with a friend, you can’t ask for better.

The first week of December rolled in quietly, but soon after, I was invited to Montreal to present my experiences with Xalcori (the ALK inhibitor I’m on) to a group at Pfizer’s annual general meeting. I have worked with Pfizer at a few events and felt it was a valuable opportunity to share my perspectives as a patient. The response was incredible. I never thought that by sharing my story I would be sharing hope, but all too often, those who work with lung cancer patients or in lung cancer research only see the bad or lose patience, so I think it is refreshing and inspiring when you can give people a glimmer of hope.

Things calmed down a bit until the holiday where I got sick, but then something I dreaded happened. Six weeks after getting married, our dear Naomi passed away. Her spirit and inspiration are one of the things that made me start These Are My Scars, and I can’t imagine where to start without her, but I’m inspired by her life, if she wanted something, she did everything in her power to achieve it. She led a wonderful life and I am so proud to have been called her friend. When I thought it couldn’t get worse, I found out that our friend Cori had passed away two days after Naomi. Cori was truly special, she wasn’t a part of the larger cancer community, but was a personal friend who was the first person to volunteer to share her story and be part of These Are My Scars. I remember when I first met her, she didn’t want to share her story, she wasn’t ready, but less than a year later she took a chance and bravely shared with us. As I write this, I still cannot believe my dear friends are gone. I miss them profoundly! As the new year is upon us, I am filled with renewed inspiration and focus, I know both Naomi and Cori would want These Are My Scars to succeed, and they are a testament to how powerful sharing our journeys are. Now more than ever, I believe that we need to share our stories and our scars, to connect with each other. For some of us it is healing, for others it helps them to feel like part of a larger community. I do it because of both those reasons, but mostly I do it because I don’t want the next person to be diagnosed to feel hopeless or isolated.

Wishing you all a blessed 2013.

Happy (Canadian) Thanksgiving

Tue, 09 Oct 2012 00:50:00 -0400

This has been a wonderful weekend, filled with family, friends and food. Its strange to think of what I’m thankful for, because I’m thankful for everything in my life. The good and the bad. I think back to before my diagnosis and I may have responded differently, but since then I have learned to appreciate all my experiences, because I’m fortunate to be here to experience them.

I have been thinking a lot about my most recent experience with First Descents and am struggling to put the experience into words, because how does one really articulate a life changing experience?! This means my reflections will likely be included in an upcoming post.

On October 14th, I’m participating in the 2012 Scotiabank Charity Challenge at the Scotiabank Toronto Waterfront Marathon. I will be walking in support of Lung Cancer Canada. You can help support me by making a secure online donation by clicking on the link below:

http://my.e2rm.com/personalPage.aspx?SID=3529611&langPref=en-CA

Thanks for reading,

A Long Overdue Update

Wed, 19 Sep 2012 21:22:48 -0400

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!

LocaLife T.O. & Writer's Unblocked

Tue, 07 Aug 2012 17:39:26 -0400

It is pretty amazing how powerful it is meeting other Young Adults with cancer!! Last Thursday (Aug 2) I participated in YACC’s first LocaLife event for Toronto. To my surprise, I walked into a patio full of new faces; I can’t tell you how happy that made me. I know, there is irony in finding happiness in this situation, but after spending a year in treatment and not meeting any others like me, to see this community growing and uniting is incredibly satisfying. I truly wish that there wasn’t so many of us out there, but there are so its nice to know we are finally connecting and sharing our experiences!!

I have been attending a Toronto support group for 20’s and 30’s, but there’s never been that many YA survivors in one room before, so I was pleasantly surprised by the numbers. What was great about this event was that it was a casual gathering of people with a shared experience. It wasn’t a therapy session or a highly structured event, but one where we could mill around and connect with familiar friends and meet new ones. I left that night feeling energized and full of hope, so much so that my writer’s block finally became unblocked!!

I have been floundering and stagnant for the last month or so. I had a million ideas, but when I sat down to write, nothing came. I struggled for words to expand my ideas. The magazine suddenly took a back seat and I felt like I was failing, myself and my community! I was desperate to overcome this block, but didn’t know where to start. Previously I had been able to sit on my computer and within 20 minutes have a clear and coherent piece of writing, so not being able to continue doing this was extremely frustrating! What I didn’t know was that simply letting that frustration go and go with the flow so to speak was what I needed. I think this meeting on Thursday was exactly what I needed to recharge my batteries and find inspiration again!! So thank you to out T.O. LocaLife leaders and to YACC for hosting a great event, and thank you to my new friends for inspiring me to keep at it!!

One Man’s Triumph, Part 2

Sat, 21 Jul 2012 16:30:00 -0400

One Man’s Triumph, Part 2:

Here is Part 2 of Peter’s amazing comeback from Testicular Cancer. Thanks again to Peter and Andrew Veil for sharing this wonderful peice.

One Man’s Triumph, Part 1

Mon, 16 Jul 2012 17:25:00 -0400

One Man’s Triumph, Part 1:

Since I have been suffering from extreme writer’s block, I thought we’d share an amazing article about a fellow cancer fighter extrordinare Peter. We’ll post Part 2 of the article on Thursday. Until then, give it a read and let us know what you think and if you are a male between 18 and 35 you should really check your “boys”.

NXNEi: North by Northeast Interactive Festival

Sun, 17 Jun 2012 15:02:00 -0400

This past week we had the great pleasure of attending the North by Northeast Interactive (NXNEi) festival in Toronto. It’s kind of a smaller, more intimate (and more Canadian!) spin on the world famous South By Southwest Interactive (SXSWi) festival.

It’s kind of ironic given that we are working on a largely pictorial project - creating the first ever magazine about young adult cancer survivors and fighters BY young adult cancer survivors and fighters - that we have not been taking many photos of the events we have been attending. We will take more photos!! :)

Anyway… we here at These Are My Scars are so excited about the future after an amazing conference this week. Here are a few of the highlights:

We originally planned to attend a workshop on social media strategy, but it was sold out. This was fate.. and a very good thing! Instead, we attended, “Marketing for the Shy Creative Type” and it was absolutely incredible! We learned sooo much from Daniel Schutzsmith (@schutzsmith) of Mark & Phil that our heads are still spinning!

Later on in the week, we had an epiphany and have already begun devising a cool campaign to help bring together many more young adult cancer survivors and fighters and build a strong global community. We want to credit Daniel with helping to spark our creativity and get us thinking about other approaches we can take to find and connect people.
I learned a lot about mobile from a session called “Content is King, but Transactions are Everything…” Afterwards Tal chatted with the awesome Marlon Rodrigues (@marlonrodrigues) and we look forward to connecting with him in the future to talk more about ‘Scars’ and how we can leverage mobile to spread the word!
After the great panel discussion at “Beyond Media Queries: Responsive Design and Cross-Device Thinking” Tal had the great pleasure of meeting Rick Mason (@egnaro). Rick has worn many, many hats at NOW magazine and at FITC. Hard to imagine anyone with more insight about how we the people can curate and publish multimedia content both online and in print as simply and efficiently as possible. We would like to take Rick and his team out for some beverages and discussion our passions in the near future. We have so much to learn from them!

There were many more excellent presentations! These are just a few of the ones that we are most excited about from this past week. We have so many ideas we want to share with you!

For the First Time Ever

Sat, 09 Jun 2012 00:39:00 -0400

Tomorrow, These Are My Scars will be making our very first public appearance - and we’re doing it on the road!!

Cancer 180, a wonderful program out of MD Anderson Cancer Center at the University of Texas, is putting on an event bringing together young adult cancer patients from all around the Houston area for a day of education on a wide array of topics, including fertility issues, employment, insurance and something near and dear to our hearts here at These Are My Scars, body image concerns.

Please join us at 7435 Fannin Street from 9:30 am to 4:45 pm. And don’t forget to show us your scars!!!

Updated: Just a couple of photos from the symposium.

We spent most of our time attending sessions, meeting survivors and filling in at the booth for national cancer orgs explaining to attendees what each of the 10 different organizations at that table does to help young adults with cancer. Hopefully more photos will be made available by our lovely hosts, the Cancer 180 Young Adult cancer survivors group at MD Anderson Cancer Center in Houston Texas.

Defying the Odds - As seen on CancerFightClub.com

Sat, 12 May 2012 15:40:00 -0400

I’m not a gambling woman. In fact, I’ve never even been to a casino, but when it came to my cancer diagnosis I needed to know what my chances of survival were. When my GP gave me the news on April 15th, 2009 that I had Adenocarcinoma of the lung, he made no mention of odds. In fact, when I asked him whether I was going to die, he answered honestly and said he really didn’t know. I don’t know why but that response gave me the motivation to cast off the mantle of sick person and put on the cloak of cancer kick-assery. I would be the master of my destiny. After all, nothing is for sure. Isn’t life supposed to be an adventure?! I mean, what are the odds that a healthy 30-year-old non-smoking woman gets diagnosed with lung cancer? It must be fairly rare because from that moment, CTs, bone scans and surgical referrals were all expedited. Within a month, I had been referred to a surgeon and had an appointment to kill Tom. Who’s Tom you ask? Good question.

I decided I needed to name my enemy, and Tom was the name that popped into my head, so Tom the Tumor it was. Every night before going to bed I’d converse with Tom. Well, actually, I’d in no uncertain terms tell Tom he was going to die, that he may as well give up because he was going to lose!! On May 15th I walked in to the surgical suite with the hopes that I’d wake up one lobe less and Tom-free. Unfortunately, that was not the case: Tom had friends that lived in my lymph nodes. I went from stage one to stage three in an hour, and my chances of survival went from between 75 - 55% to between 35 - 10%, not the outcome I had been looking for. So now what?

My best chances lay in an aggressive plan of concurrent chemotherapy and radiation followed by a lobectomy, then further chemotherapy. This plan came to fruition on June 15th, literally two months after my diagnosis. I was scheduled for 30 rounds of radiation to my chest and lymph nodes, with two cycles of daily chemotherapy, which consisted of Cisplatin and Etopiside. All things considered, I tolerated chemo very well. The anti-emetic drugs they gave me controlled my nausea, and for the most part, I did what I normally did (when I wasn’t at the hospital). The worst of my side effects were fatigue, hair loss (sporting the Benedictine monk look), and acid reflux. By mid-July, I was finished this phase of treatment, but now I waited for September when they would finally remove Tom and his friends. Until then I continued my daily ritual of rallying my troops. I know you’re wondering: “She has troops?!?”

My troops were all my non-cancerous cells: my blood cells, my immune system, and everything in between. So each night I’d talk to them, rally them, let them know that even though they were taking a hit from the chemo, they still outnumbered the cancer and it was their job to get in there and get them! This continued during surgery, with the exception that their job was to heal as well as maim any leftover cancer. Surgery consisted of a right mid-lobectomy and wedge resection. I was in hospital for nine days, and things looked good. My recovery was quick, and I was able to get back to “normal” within a few weeks.

In November of 2009, I started post-surgical chemo. It wasn’t as frequent, but it was a much higher dose than before. I don’t know why with this round I developed serious issues with anxiety, but I think it was because now I had an end date, something I hadn’t had before. With each visit and procedure I became more and more anxious. This round also required the insertion of a PICC line, something fairly innocuous but it rendered me catatonic. Ativan and meditation were a godsend!

Chemo consisted of high dose Cisplatin and Vinoralbene. The side effects hit me almost immediately and were much harsher this time around. The nausea was manageable, but I became neutropenic, delaying treatment a number of times. I also began to suffer symptoms of neuro-toxicity (tingling and numbness in my hands and feet) and ototoxicity (ringing in my ears), neither of which shook my resolve to continue with this course of action.

This time around though, treatment was torture. I knew I had to do it, but it seemed never ending. My PICC was my enemy; I absolutely hated it. All I wanted to do was take a normal shower, one in which I didn’t have to wrap my arm up in plastic and avoid getting it wet. A shower that allowed me to be ambidextrous and wash both sides of my body with ease. Simple pleasures!! My last torture – I mean treatment – was December 24th 2009: Merry Christmas, indeed. I was overjoyed when they took that PICC line out of my arm!

New Year 2010 was strange. I didn’t quite know what to do with myself. Treatment was done, now what?! Naively I had convinced myself that I’d go back to work, jump right back into life, pick up the pieces and carry on, but what happened was I began to feel the gravity of what had happened to me. Now that I had time to think, I realized that I didn’t want to go back to my old life, that I had been inexplicably changed for the better. I had been given a second chance, an opportunity to re-evaluate my life and make it what I wanted, but how? What did I want?

The months that followed were quiet and filled with ups and downs. I had follow up CTs every three months that almost always caused me great anxiety, but so far each scan showed no indication of cancer. That summer I went to Italy for a month and the UK for three weeks: it was heavenly! To deal with the emotional toll this had on my life I began seeing a psychologist. I figured life is too short to be depressed!! I eventually pieced my life back together. I felt strong enough to go back to work part-time, so in January I made my return to the classroom. It was a joy and a shock to the system: I quickly found myself struggling and stressing that maybe I jumped the gun. But after a few weeks, I got back into the groove. My scans still brought me anxiety though, and the further along I got, the more I stressed.

My oncologist once said that usually if cancer was going to come back, it would do so within the first two years. After that, it would take five years of clean scans to deem me cancer-free. I had surpassed a year, so I felt like I had crossed a major hurdle, but in my head there was always a nagging little voice. You see, my surgical pathology report indicated that the margin where they dissected and removed the parts of my lung were positive. What did that mean?! My understanding was that when they tested those cells, they showed the presence of cancer. The post-operative chemo should have taken care of these stragglers, but did they?! In February 2011 my scans began to be worrisome for me, because they kept noting nodules in my lungs. At this point, they couldn’t confirm that it was a recurrence, and I had to be satisfied with not knowing. Living with this uncertainty was torturous! I just wanted to know one way or another!

In May I got confirmation that my cancer was back. This time around, though, it was present in both sides of my lungs and in multiple lobes. The odds were not in my favor! So much so that they don’t even post these odds on the Internet. My Oncologist was less than encouraging, too. Despite my will to kick some cancer ass, I was finding that medically there wasn’t much to do other than wait and get sicker before anyone was willing to try to make me better. Surgery wasn’t an option, and radiation wasn’t an option. My cancer was so small, and I was asymptomatic, so chemo wasn’t a good plan either, because it would make me sicker and it didn’t offer me a cure anyway. No matter what I did the cancer would come back. In not so many words, and without actually saying it, cancer would kill me.

I was mad! That’s actually an understatement! I lost all faith in the medical system that months ago saved my life…what the hell happened? I wrestled with accepting this “wait and see” approach, and one day out of the blue I read an article posted on I2y’s Facebook page. It was about a new targeted drug for lung cancer patients that was proving miraculous results in those who were part of the clinical trial. I immediately phoned my nurse and asked her about the trial. She hadn’t heard of it but would tell my oncologist. Within a week, I had been referred to a new oncologist who was part of the trial. I had found hope again.

Part of being included in the trial was having a fairly rare mutation of the ALK protein. This mutation only occurred in between 2 to 5% of NSCLC (non-small cell lung cancers). I was nervous, what if I wasn’t a mutant? What next? It turns out I am an ALKY. The trial was a randomized trial, no placebos, so no matter what, I’d be getting treatment. Time to rally the troops again! I was incredibly lucky, once because I was randomized into the drug group, and twice because my tumors were so small they technically weren’t measurable. I should never have gotten on the trial to begin with, but since I was in, I was in. Phew!

I have been on the clinical trial for Crizotinib for seven months now, and all my scans (and I’ve had many) are showing the cancer getting smaller or disappearing. My oncologist has said that if someone didn’t know, my chest CT would look normal. Ah normal, how I’ve missed you! I do experience side effects, and some are not pleasant, but I feel healthy and I have hope that I’ll be around a lot longer now.

Like I said, I’ve never been a gambling woman, and so far in my journey I have bucked all the odds. From diagnosis to treatment some might think my luck will run out. But if I had to bet, I’d bet that the odds are in my favor because I’ve never really put credence in odds anyway. Even 0.1% is not 0. I choose to live one day at a time, and live each day to its fullest, being present, and being hopeful. We are all going to die someday, that’s a guarantee. Not everyone truly lives with the time they have been given, so let’s make that time count whatever the odds!

Anne Marie

HELP US FIGHT THE FRIGHT! Cancer in young adults (18-39 yrs) often necessitates aggressive...

Mon, 30 Apr 2012 17:58:00 -0400

HELP US FIGHT THE FRIGHT!

Cancer in young adults (18-39 yrs) often necessitates aggressive treatments with debilitating side effects such as infertility and chronic disability. Despite compromising 10% of all new cancer diagnoses across Canada (approximately 7,500) these young adults remain isolated, vulnerable and poorly served.

Hope & Cope, Cedars CanSupport and VOBOC (Venturing out Beyond our Cancer) have taken the lead in offering exceptional support here in Montreal through quarterly retreats, exercise activity evenings at the JGH Hope & Cope Wellness Centre / Lou’s House, support groups at the Royal Victoria hospital, social outings and more. When asked to identify their biggest challenges, young adults clearly identified isolation, lack of information and access to resources as barriers to receiving the support they require.

Based on these results, Hope & Cope has been developing an innovative, interactive website called www.cancerfightclub.com. This site provides a comprehensive database with medical, legal, financial, psychological and life management resources, a Professional Q&A portal, and a virtual support community (private member messaging, blog, forum, and an event calendar).

CancerFightClub will be launched officially at a special event on May 5th, 2012. Please come out and show these young adults that they can, indeed, “Fight the Fright” that comes with a cancer diagnosis. By supporting CancerFightClub, you will help ensure that young adults here in Montreal and throughout Canada can access the resources that will help them navigate their way through the storm of cancer.

BUY TICKETS:
https://www.jghfoundation.org/event/CF2012/tickets.html

MAKE A DONATION (with tax receipt):
https://www.jghfoundation.org/donate/CF2012.html

Henna Heals by journalist Kim Hughes of Samaritan Magazine!

Mon, 30 Apr 2012 17:53:51 -0400

Henna Heals by journalist Kim Hughes of Samaritan Magazine! :

BY KAREN BLISS, www.samaritanmag.com

If the best way to de-stigmatize something is to boldly put it under people’s noses, then Frances Darwin’s Henna Heals is making conditional female baldness both both acceptable and, perhaps improbably, kind of chic.

Scarred for life

Mon, 30 Apr 2012 17:38:00 -0400

There is one last lesson I’ve learned throughout this experience, and I could have added it to my last post, but it really warrants its own post. The whole idea of what we are trying to do with These Are My Scars was inspired by the events that took place within my own cancer journey.

During treatment I was so focused on just staying alive and getting through it, I never gave any thought to how I would be affected by the after effects of treatment, including surgery. I have never been squeamish about surgery, I actually wanted to be a surgeon at one point in my life (damn you chemistry), but once it was over, part of me just wanted to bury what had happened.

It’s strange that people will say “you’ve scarred me” or “I’m scarred” but it always has such a negative connotation. I’ll admit to buying into the negativity, after all it’s something that happens to you. No one really chooses to become scarred, so I suppose it can be seen as an invasion. I thought so too!

After my Lobectomy, I was left with a large red J shaped scar on my back and side, it looked like a zipper if you included the staple marks, and I hated it! It reminded me of all the crap and fear that I was feeling. I hated it because when people saw it they’d ask me to relive the story behind it, I got tired or explaining and lying that I was “fine” when really I was a mess. I decided that to commemorate the end of treatment I would get a tattoo, one that was big enough to cover the entire scar, so that it’s ugliness would become something beautiful.

As treatment ended, the emotional fallout began and I slowly became a highly functioning basket case. To look at me I was normal, but inside I was an unmitigated mess, barely holding it together, and I was becoming exhausted keeping up the front. The more the Doctors told me I was fine, the worse my anxiety got, until it happened. The other shoe dropped and the news I was afraid of was true, the cancer was back. The knowledge of which was terrifying and liberating at the same time. The next day I went and began my tattoo odyssey. It started at the wrists, then the shoulder, lower back and hip, all the while I was dying to tattoo over my scar. I still hated it! I would hide it, and cover it up, and couldn’t wait till that cover up was permanent, so it would be beautiful!

The strange thing was that as time passed, I continued to tattoo, but I held off on that piece, I’m not sure what I was waiting for. Maybe I was waiting for acceptance, that this thing was part of me and shouldn’t be covered. Maybe If I covered my scar, it would be like denying what happened, the good and bad…but a lot of what I found was goodness, yes cancer sucks, I can’t deny that I wish no one ever had to get that news, but we do, and it sucks! Without it though, I wouldn’t have met some of the most amazing and inspiring people, or have realized that life is so much more than what I was living! As that realization washed over me, I found that I could deal with my reality; the thing was I didn’t even know that I had realized it yet! One day I found myself talking to my tattoo artist about my back piece and how I wanted it to be, describing the image I wanted painted and then I said it, “you have creative license, but don’t cover the scar!” What!? Had I lost my marbles!

It wasn’t until I was having coffee with a dear friend and fellow cancer ass kicker that the catharsis hit me in its entirety. We began talking about tattoos and how they could tell a story, I was explaining how I felt about my scars, when he told me about his scars, and I couldn’t believe it! He was a virtual road map of surgical storytelling. Knowing about his story, where he had been and what he had gone through to survive made his scars beautiful! Mine too.

I never gave myself credit for enduring, because I was always thinking there was someone worse off. I was ashamed that I had come through fairly unscathed compared to others, I felt guilty. I had to deal with that guilt! As my scars faded, I think the guilt did too. I have to admit that I’m a bit sad they have faded, and maybe now I’m afraid that they’ll disappear completely. Its strange loving and hating something at the same time, except I don’t hate them anymore, if anything I’m proud of them and of my story.

We all have a story to tell and scars from our journey, whether they are physical or emotional and we need to deal with what they represent. For me it was the emotional scars that cut me deeper than the physical ones, once I opened up about my guilt, my fears and anxieties, I was able to embrace my physical scars and appreciate them for the beauty and strength they represented.

I’m alive, I survive, I thrive, and These Are My Scars!

Reflections on My Three Year Cancerversary…Lessons Learned

Mon, 23 Apr 2012 23:53:00 -0400

I should start by saying that on my actual Cancerversary (April 15^th) I was so preoccupied with a doggie crisis that I spend all day at the emergency veterinarian’s worrying about my dog that I forgot all about what day it was! Needless to say, in the days that followed I did a bit of reflection on what surviving three years means to me.

I remember shortly after I was diagnosed, a friend of mine told me about her mother who was also battling cancer at the time. She mentioned that her mother had been fighting for three years. I thought, wow, what a long time!! In hindsight, it seems like no time at all!! It’s strange, I barely recognize myself or my life anymore, but I love who I am and I certainly love my life…cancer and all! I had always thought I knew what I wanted, but it took cancer to show me what was really important, and it wasn’t what I thought it was. Cancer has been both a blessing and a curse, and along the way, I’ve learned a few things that I’d like to share.

I’ve never felt so loved or so alone in my life

It is a strange paradox having an amazing family and friends who love and support you and yet still feel alone and isolated from everyone. This was the situation I found myself in after my diagnosis and treatment. Initially, this really bothered me until I found Young Adult Cancer Canada. Even though I had never met an actual young adult survivor, just knowing they existed gave me hope and let me know I was not alone.

Richness is redefined

I used to think that if I worked hard and got a good job that life would be good. I’d have money, be able to travel, maybe buy a house, and finally retire with a nice fat bank account. I’ve learned that even with a good job, a nice house, and a fat wallet, life can throw you a curve ball. If you don’t have your health, nothing else really matters. I remember being envious of those who lived “the good life” but what was that? Were they really happy? Sure they had pretty things and drove nice cars, but were they really rich? I’ve discovered that money isn’t all it’s cracked up to be, that richness is a state of mind. I’ve discovered I am rich. I have a loving supportive family, I am healthy (more or less), I have a roof over my head and food in my belly. All these things make me luckier than a majority of the global population! I have also had this life altering experience that for good or bad has made me a new person, one who values connections over dollars, and experiences over possessions.

I’ve never wanted to live so hard in my life

Being told you have cancer once is frightening, but being told it has come back can be both devastating and liberating at the same time…again another paradox…let me explain! After I finished treatment the first time, I figured that the new and improved me could pick up the pieces and dive right back into my old life and for a while I did. In May of 2011, I was told the cancer had come back after about a year of stability, this news was a blow! To top it off, I was told that my options were limited, I wasn’t a candidate for radiation or surgery and chemo wasn’t really an option until I became sicker, and even then despite our best efforts the cancer would come back. Essentially I was screwed…so I said to hell with expectations; I’m going to do whatever I want and what ever makes me happy. Since then, I have done exactly that. Living hard isn’t what you might think!! It’s not about partying or running amok, for me it’s about experiencing all the beautiful moments life has to offer if we just took the time to stop and enjoy them. It’s about sharing myself, my story, connecting to people and nurturing those relationships, so that when it is time to cash in my chips, I won’t have regrets about what I didn’t do or remorse about how it treated someone. Living hard is about being present and engaged in life!!

Letting go of things

There are certain things I’m learning to let go of and mourn their losses, and it is a process. Some days are better than others, and some things are more painful than others! I’ll never be a home owner, that’s ok…the white picket fence and double car garage are over rated, I’d rather travel anyway!! I’ll also probably never have my own children, partially by choice, but mostly due to treatment. For the most part, I’ve accepted that getting pregnant or being fertile is not going to happen for me, usually I’m okay with this, but sometimes the desire to have a baby comes over me and my heart breaks at this loss. This usually happens when I’m surrounded by cute babies (Damn their cuteness)!! Pregnancy and carrying a child to term would be incredibly difficult as I’d need to stop treatment to try, and even then there are no guarantees that the drugs wouldn’t affect the health of the baby, so I think its better not to take the chance.

Realism is perfectly fine

I’ve realized that I’m not an optimist or a pessimist but a hopeful realist, and this is perfectly fine for me. I accept my reality, I have cancer. I’ll likely die with cancer, but that doesn’t mean I don’t want to live with cancer for a very long time!! That sometimes shocks people, but it’s the truth, it’s okay to accept our mortality without giving up on life. I chose to live, and I chose to live with cancer, but I also realize that there will come a time when that is no longer a possibility, and I’m okay with that even if others aren’t.

People will give advice from the heart even if it is annoying

I’ve had many people try to give me advice or suggestions to “help” me, and I’ve realized that they do this with the best intentions even if they have no clue or are annoying, they do it with love. This is true with questions too; I can’t tell you how many times I’ve been asked if I smoked. Having lung cancer at 30 can be hard to get your head around, I guess some people assume you did something to bring it on because it’s all they know…After all smoking = lung cancer. This question used to make me homicidal, but I’ve realized that not many people know that almost 25% of new diagnoses of NSCLC are people who have never smoked, I happen to be one of them, so I choose to educate rather than berate…although I admit to the occasional sarcasm!

Ok I’ve babbled on long enough!!

Needless to say, life is good! So my life isn’t what I thought it would be, big deal! I’m much happier this way. After all, isn’t life is supposed to be about, learning, discovering, living, and loving?!

In case you are wondering, my dog is just fine and was back to his perky self in no time!

Thanks for reading!

Is My Cancer Different?

Mon, 23 Apr 2012 22:03:00 -0400

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

Please support Mike Lang as he endeavours to start a new...

Tue, 03 Apr 2012 20:18:18 -0400

Please support Mike Lang as he endeavours to start a new project. He has 10 days to raise the rest of his fundraising goal, if you can help, please go to Kickstarter to support an incredible man tell an amazing and inspiring story!!

Over the past four years since being diagnosed with Hodgkins Lymphoma, Mike Lang has dedicated his life to helping other cancer survivors live with, through and beyond cancer. Early on, Mike recognized the power of sharing stories to help cancer survivors find healing. Thanks to close friends Aaron Bryant and Fred Sprinkle of Hands On Films, Mike found the perfect opportunity to combine his passion for storytelling with the creative and compelling medium of film. Out of this great partnership and passion for storytelling has arisen two films, an adventure therapy program (Survive & Thrive Expeditions), as well as opportunities for Mike to plan and facilitate over 25 retreats, conferences, activity-based support groups and adventure therapy trips for young adult cancer survivors.

With this new webseries, Mike and Aaron want to narrow their focus on one person’s story. Amy Mcdougall-Aubin, was only 24 when she was first diagnosed with Ovarian Cancer. She was pregnant at the time and not able to undergo the traditional chemotherapy and radiation treatments and instead had to try some complementary treatments. After spending a few years in remission, the cancer metastasized to her right lung and she was diagnosed with Cervical Cancer. She is currently undergoing a very difficult round of chemotherapy and radiation treatments. Amy is allowing Mike to follow her journey as she finishes chemotherapy treatments in Toronto, gets prepared for, and finally rafts the Grand Canyon with Survive & Thrive Expeditions in August 2012.

Here is video from my amazing friend Naomi’s head shave a...

Tue, 03 Apr 2012 20:10:47 -0400

Here is video from my amazing friend Naomi’s head shave a couple weeks before for her Shave for the Brave fundraiser, Sunday, April 1st at Absinthe Café Resto Bar. Thanks to all her hard work, our team raised over $5000 for Young Adult Cancer Canada. Keep your eyes peeled for photos and a new video of all out our cuts or shaves, and if you can, please support Shave for the Brave.

http://www.shaveforthebrave.ca/
http://www.youngadultcancer.ca/

Music used by permission from
Suzie Vinnick 〜 Happy Here
Tracks 14 - Star Fall
http://www.suzievinnick.com/music/
http://itunes.apple.com/artist/suzie-vinnick/id42213597

This is a video filmed by Frances Darwin of Henna Heals for the...

Tue, 03 Apr 2012 20:04:51 -0400

This is a video filmed by Frances Darwin of Henna Heals for the Cuts for Cancer event at Danforth Collegiate & Technical Institute on March 27th, 2012. This event and Henna Heals were featured on CBC News.

Henna Heals is a team of artists based in the Greater Toronto Area. We specialize in professional henna-art and photography services for people who are experiencing complete hair loss. Our safe, customizable and temporary “Henna Crown” services are beautiful alternatives or additions to wigs, hats or scarves. We also provide other henna services that assist in funding complimentary Henna Crowns for people that could otherwise not afford them.

Kickstarter - Valleys

Thu, 22 Mar 2012 22:37:19 -0400

Kickstarter - Valleys:

Here is a new project by Mikey Lang. Please show your support buy visiting his Kickstarter page and supporting his web series.

You can also check out his previous projects at www.wrongwaytohope.com
www.survivethrive.org
www.ebbflowstory.com

Here is a preview of my incredible friend Naomi’s Shave...

Wed, 21 Mar 2012 00:08:36 -0400

Here is a preview of my incredible friend Naomi’s Shave for the Brave. Please watch and if you can support team Absinthe on April 1st when our team will either shave or cut off 10 inches of hair to help raise awareness and critical funds to help Young Adult Cancer Canada build a community of young adults diagnosed with cancer that provides information, support, skills, and opportunity.

Your donation will help YACC provide cost-free web-based and face-to-face programs for the young adults who need them to move through and beyond their cancer experiences to make the rest of their lives the best of their lives.

To make a donation online now, please visit my personal page.

For more information about YACC, please visit their website.