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.

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

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.

AM

Happy (Canadian) Thanksgiving

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:

 

Thanks for reading,

AM

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

LocaLife T.O. & Writer’s Unblocked

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!!

AM

NXNEi: North by Northeast Interactive Festival

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:

  1. 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.
     
  2. 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!
     
  3. 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

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

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