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Personal Update #2

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As I write this, I sit in a room at Princess Margaret Hospital waiting for my first dose of a new-targeted therapy. The one I had been on, the one that gave me almost five years, the one I had grown used to, stopped working well and now it is time to move on. Quite literally now. The thing is, I almost didn’t make it to my appointment today, a day I have been waiting weeks for, the day I have been scanned, biopsied, MRIed and ported for and it all almost didn’t happen. That’s because last night was a bad night.

It got so bad and scary for me that I almost called an ambulance. Almost. You see I have had this pesky cough for a few months now. I first thought it was due to seasonal allergies because mine have been raging all year. I tried dealing with it myself but since it didn’t get any better, my medical team is monitoring it and we have tried numerous things to try to get rid of it. It seemed to have worked until I came home from Chicago with a head cold and then it reared its ugly head again. This time worse, this time I strained my entire back coughing, this time so bad it made me projectile vomit, which made it scary.

I haven’t been scared in a long time, the last time was when I recurred and thought I was doing to die, but since then I’ve been ok. Last night being the exception. Last night I realized that this cough wasn’t what I thought it was, an innocent cough related to my allergies, or a head cold, but related to my cancer progression. It shook me. As I sat on my bathroom floor hacking gasping for air while I threw up all I could think of through the stabbing pain in my chest, ribs, and back was I’m going to asphyxiate on my own vomit and die…and this is how Patrick will find me.

When the vomiting stopped, I had a vasovagal reaction (a little thing that I equate to the feeling of having a mild stroke – you get weak, sweaty, feel like you are going to puke and shit all at the same time #Funtimes) that just ratcheted up my anxiety so I thought I should call an ambulance…but of course I didn’t, I calmed down and tried to go to sleep because damn it I’m getting my new drug tomorrow!! Sleep didn’t come easy though, I struggled with getting comfortable because my back was killing me and then I kept having thought fits. I must have managed a few winks because as the sun rose, Patrick jumped out of bed to wake me up; we slept through the alarm, Great!!

Bleary eyed I got into the car and down here an hour late, and another two hours waiting for blood, but finally I am here. I told the physician during our examination and again after mentioning the cough and the events of last night, he added fuel to what I feared most, that this cough is due to the progression. Nothing certain of course, but nothing to rule it out either. My body was betraying me again!! After all these years of learning to trust myself, learning to control my fears and take control of my anxiety all disappeared in one betrayal. Never in this whole time have I had a symptom of cancer, not in seven years! Now after all these years betrayed. How do I re-learn everything? The seed of doubt has been planted…what if this doesn’t work? What if this bloody cough doesn’t go away? Where do I start again?

A Personal Update

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I’d like to apologize for not posting my ASCO day 3 & 4 Update, but since I got home it has been a blur of appointments and dealing with a pesky head cold that I seemed to have caught in Chicago. So I decided I would write a personal update since I actually have something to update after a very long time.

I have been incredibly lucky for the past five years to be on a TKI (Targeted Kinase Inhibitor) that has effectively controlled my lung cancer. I can honestly say that I didn’t think it would work so well for so long, but it did and it has. Now after a number of months of careful surveillance and comparison, I have had slow but consistent progress. My cancer has finally outsmarted my drug. Without getting into too many technical details here, ALK+ patients have a number of places where we can develop resistance to our medications. I promise, that I will explain this phenomena in a later post, but suffice it to say, I needed to make a decision.

There has been a great deal of progress made in the TKIs ALK+ patients can take. They have developed second and even third generation drugs that address some of the “problems” with the first generation drugs have. Mainly, crossing the blood-brain barrier and addressing the variety or spots on the protein where we experience drug resistance. So with careful consideration and consultation with my oncologist, I have decided to enrol in a phase I/II trial at Princess Margaret. It is another reason I wanted to go to ASCO, so I could learn what the latest and greatest treatment options are for patients like myself. More on that soon!!

This week, I have had a battery of diagnostic tests, it began with a biopsy, so we could see exactly what is going on in my tumors. Although this wasn’t 100% necessary, the tissue on file so to speak is 7 years old and may not represent an accurate picture of what is going on. So for me, it was an easy decision to make and now we have a fresh sample. After that, I had an MRI of my brain, a new experience for me. It wasn’t a wholly unpleasant experience, but man is it noisy!! Clanks and bonks and at some point I felt like I was in an early 90’s Nintendo game.

Today I had my port inserted, something I wish I had done years ago! After 6 months of infusions and 5 years on a trial protocol that required frequent CTs with IV contrast, my veins aren’t what they used to be and I was tired of the anxiety of whether or not the technicians could get a vein or not. Usually it was not and I’d end up looking like a heroin addict, bruised and scabby from multiple pokes. So in it went. As I write this, I am still doped up, so I hope this all makes sense! Tomorrow I go for a bone scan and Monday I go for my screening exam and get to use my handy dandy new port for the first time. In a warped way, I am looking forward to Monday so that I can find out the results of both my latest CT and biopsy. I will also get randomized and get to start.

After being NED (no evidence of disease) for so long, it’s a bit of a mind f*ck having to go through all of this again. I wonder what my reaction to the new meds will be? What will my side effects be? One of the new and more common side effects of this drug is hypercholesterolemia, which kind of sucks, but is a small price to pay. If I do have this, I’m sure it will be controlled with more meds. What I’m really hoping is that my edema will go away! With my luck though, it probably won’t, but fingers crossed!

So it is a brave new world I’m entering and I am hopeful and excited for what the future holds. The last 5 years have been unexpectedly eventful and productive. It is strange looking back on all that I have done and accomplished, given I never thought I’d survive 5 years. Now I am looking forward to the next 5 and the 5 after that. My painkillers are kicking in so before I get completely incoherent and nonsensical, I will end here. Thanks for reading and keep your peepers peeled for my ASCO update and future posts.

I’ve got my eyes on you Momma.
Hey Momma I’m right here by your side k
My nurses. Shhhh Momma is tryin to sleep!

AM

ASCO Overview Day 1 & 2

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IMG_3825Well I made it! By the time I got to my hotel after taking the “L” into the city, I wasn’t able to attend any of the sessions presented on Friday June 3rd, so I did what any keener would do and went to the McCormack Center to pick up my registration package and scope out the place. The place was HUGE!!! Still undaunted I found my way to registration and afterwards went to check out the Advocates lounge. It was here I found some of my tribe.

There is a truly amazing phenomenon that happens when you meet others like you. There is an immediate kinship and bond forged through mutual experience that immediately makes friends out of strangers. Mind you it helps that many of these individuals are my online heroes and I follow them on Twitter, chat, or through their blog. Who ever said you shouldn’t meet your heroes was dead wrong! I was immediately swept into their kindness and invited to dinner. How could I not love these people, when we have both cancer and food in common?!

Exhibition Hall
Lung Session
The ASCO Madness, just you and 40000 friends

Day 2 was in earnest my first day at the conference. As my first time here at ASCO, I can honestly say I was overwhelmed by the sheer enormity of not only the facility, but with the number of participants, presenters and exhibitions. To give you an idea, I walked 10km yesterday and that was only in the McCormack Center. I was most interested in the lung cancer track, for obvious reasons, so it was a busy day. Poster sessions began at 8am and ended at 11, followed by oral sessions at 1 and at 3. In between, the advocacy lounge generously provided lunch. Because ASCO is so huge, many sessions overlapped and besides being in two places at once, I decided to view some of the sessions at a later time (thank goodness all sessions are recorded). At 5, I attended Lucy Kalnithi’s “book club” session where she discussed her late husband Paul’s book When Breath Becomes Air. It was a beautiful insight into their lives as patient/supporter and as clinicians. From there, I ran up to the official ASCO Tweet-up where I got to meet a few more individuals I know from the web. All in all, it was an eventful and full day at the conference.

Before falling into bed, I looked over all the handouts I had collected and planned my day for tomorrow.

First blog post

This is the excerpt for your very first post.

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As Jerry Seinfeld said “Hellooooooooo”. Welcome to These are My Scars. In a very long and arduous decision, I have closed my previous site and blog and decided to begin anew here. If you would like to read previous posts, you can always view them at http://thesearemyscarsorg.tumblr.com at least until I familiarize myself on how to archive here.

My goal with this blog is to not only share in some of my personal experiences, but to serve as a resource for others who have been diagnosed with lung cancer. I have always thought that being “in the know” was important, but even more so when you are trying to advocate for yourself and your loved ones. There is so much information out there, but it can be daunting for a patient to find it or even understand it, which is where I want to fill the gap.

As I type, I am sitting in the airport lounge getting ready to head to the Mecca of oncology meetings ASCO, where I hope to fill my brain with lots of useful information that I can share with you. Stay tuned and please forgive our appearance while we build the blog.

Anne Marie

 

 

Ups and Downs

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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

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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

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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

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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

One Man’s Triumph, Part 1

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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”.

AM

One Man’s Triumph, Part 1