Scarred for life

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

I should start by saying that on my actual Cancerversary (April 15th) 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!

AM

Is My Cancer Different?

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

So what is their message?

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

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

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

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

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

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.