One of the biggest pitfalls of surviving this horrible disease for 8 years is that you lose a lot of friends along the way. I’ve lost too many to count. Every single one of those people is a scar on my heart.
After I was diagnosed with cancer, I longed for connection, someone somewhere that could tell me I wasn’t alone. I found my tribe online. Actually I found a few tribes because my experience like many out there didn’t fit a neatly tied up definition of the cancer experience. I wasn’t just a young adult, or a lung cancer patient, but a young adult with incurable ALK+ lung cancer. So eventually I found what I was looking for. I cannot begin to tell you how powerful it is to connect with people who have walked in your shoes.
In many instances I have never met the people I talk to, we tweet, chat, post to web boards, blog, etc. but in those communications we have forged a bond of strength, empathy, support and friendship. In all of my interactions with others like me, whether in person or online, I find that these patients have an uncanny ability to cut through the niceties and small talk and really get down to the humanity of this disease. They know the fear, anxiety, sense of loss, empathy and mutual respect for another’s journey, because they too have been through it. It is because of that shared experience that we connect on such a profound level. I see myself reflected in them and they see themselves reflected in me. It is a connection that many of us don’t have with even our loved ones, because as much as they love and support us, they just simply don’t know what it is like to live with cancer.
Being a part of these communities is such a privilege. So often we share things with each other that we can’t share with even our closest friends and loved ones. It is truly a unique and beautiful thing to have such friends, but these relationships come with a price. It is the double-edged sword of sharing such deep connections – the grief and sense of loss when one of our friends passes away.
Someone once asked me how I can be so sad for someone I’ve never met? The answer is simple. I am mourning for them, their families and friends. I am mourning the loss of potential happiness and love and life that could have been. I am also mourning for me because at some point it will be me. When one of our friends dies, we are reminded very explicitly that we too are vulnerable. For a brief time, the light and fight and hope we have nurtured is extinguished and we are broken. The loss of “virtual” friends results in a very real sense of loss and sadness. We should treat these feelings the same way we would if we lost a “real” friend. Feel the sadness, talk about your feelings, honour your friend’s memory, and if needed seek support, within your communities and outside of them.
Yesterday, the world lost a tremendous light.
She was 27, a young mother who beamed when talking about her 18 month old miracle boy. She was an incredible advocate speaking out for the lung cancer community and raising awareness and funds for support programs and research. She like me was a teacher and a young face of lung cancer.
Elizabeth also known as From Lizzie’s Lungs was diagnosed just shy of two years ago, she was celebrating being a newly wed. She and her husband were expecing a new arrival when a nagging health concern turned their lives upside down. Lung cancer. A rollercoaster ride no one let alone a 26 year old should face. She faced every challege with stride and with grace. She was a force!
Today I mourn Elizabeth. I mourn for her beatiful son, I mourn for her loving and supportive husband, I mourn for her parents and family who loved her, I mourn for her friends, and I mourn for us.
Fly with the angels Elizabeth. Just Breate.
AM
I know there have been many times in my life where things seemed overwhelming or the crushing sensation of stress and anxiety made it seem like I could never climb out of the hole. In the past. I would have likely handled those feelings by drowning them in retail therapy, alcohol and escapism. I’d like to think I’m a bit more self-aware now, but stress has a way of sneaking up on you.
In nature, the stress response is designed to protect animals (humans included) from danger. It’s called the fight, flight or freeze response. Great for bunnies being chased by foxes, not so good for our hectic lives. The problem is, when we are constantly “under stress” and I don’t mean our lives are being threatened by a bear or an axe-wielding maniac, but the ongoing everyday work, life, kids, health, …whatever cycle. Then these stresses compound on us and our health can 
whole weekend and agreed to see each other again. When I got off the train three days later, he met me with snacks, because he knew I had been on a train for 5 hours and I might be hungry (Swoon). He then said he had dinner awaiting me.
My apologies for the lateness of this post! It was a hospital day yesterday and afterwards my wonderful husband surprised me with an impromptu date night, and we got in late. Also actual writing had to happen and I wasn’t sure what to say, but finally, here we go.
The theme for Week 3 in the Meditation Series is gathering the scattered mind. I’ll be honest that lately I have been incredibly scattered because I have been waiting for scan results, so this weeks practice has been pretty spotty and I’ve been so easily distracted.
Mindful Breathing is another tool that helps us to ground us and bring gentle awareness to ourselves without judgment or need to change anything about our situation. We simply breathe and notice our body as we do so. I tend to have a challenge doing this one on my own and need to listen to a guided meditation. I find I am able to focus on my breath with more attention having someone guide me than if I did this on my own. Its ok if your mind wanders while you practice, it is completely normal and expected. So don’t judge or think you failed. Just notice the thoughts or the fact that you have wandered, and refocus on your breath. If it happens again (and it probably will) just acknowledge and refocus. That’s the beauty of breathing; every breath is a new opportunity to start again.
Once upon a time, I took my body for granted. It was strong and flexible and I tipped the scales at about 95 lbs. soaking wet. Fast forward a few years and a tussle with lung cancer and my once slim frame is much more Rubenesque.
normal as possible. This “normal” is new for me because I once had boundless energy and pushed through fatigue; now its all I can do to get to a couch before I pass out. I have often tried to explain what my fatigue is like, but words fail me. The best way I can describe what is happening is a complete and total shut down that sneaks up on me like a shadow then totally consumes me and I can’t stop it. The problem is even if I sleep, I still wake up exhausted. This makes working and socializing rather challenging.
Having lung cancer really messes up your lung capacity. Even though pulmonary function tests say I am in the normal range, I know I’m not. I can’t run to save my life. Climbing up hills is out of the question, even just a slight incline has me huffing and puffing like the big bad wolf, and stairs, lets not even talk about them.
I used to have great legs, now it seems that I have two stumps attached at the hips. I began to notice that my knees and ankles would get stiff, and then I realized that my legs were sometimes swollen, as time went on, they were always swollen to the point that my range of motion became limited. To help this problem I began taking a prescribed diuretic that worked for a while but became less effective as time ticked on. Topping it off was my bone scans revealing what I long suspected, that I have arthritis in most of the joints in my ankles, feet and legs and in my shoulders, hands and wrists. Hello creaky old lady bones.
So at the end of January when gyms everywhere are beginning to empty in the annual, New Year’s resolution revolution (Why is it that we are compelled to make resolutions? Does anyone really keep them?) I will be grateful and know that I am good enough.
though, life began infiltrating these moments and I found myself falling back into old habits. I found myself complaining about the weather (as Canadians will do), feeling my blood boil when I was stuck in traffic, the stars were dimmer, and then I stopped noticing.
It isn’t for the feint of heart, because of the time commitment (8 Weeks + home practice), but I swear it is worth it. Each week I would meet with a small group of stressed out over worked harried individuals and we would learn a specific practice or a few. Then we were tasked with homework. Typically it was an exercise in attention, some sort of meditation, and a very short “journal”. Initially it was a challenge fitting it in, but somehow if you are committed, you do find time.
Neon
Icicle Towers and Chandeliers
Red Reeds on Logs
Orange Baskets
Persian Room (I like Rainbow Room better ;x)
Persian Trellis
Pendleton Blankets & Tabacs
Inspirations
to her wit and humour. Carrie’s Leia was the first princess I ever wanted to be. I mean why not? She was plucky, beautiful, spunky and carried a blaster, what little girl wouldn’t want to be her?! Sadly I was ill equipped and lacked the follicular capacity to create those famous cinnamon buns, Cinderella it was. All humour aside, her passing reminded me that all of us struggle, sometimes it is invisible and private and sometimes it is right there in your face. Regardless of which it is, we all have the capacity and grace to pull ourselves up and make a comeback.
had an inkling that it may come around again post Dx and tried to head it off at the pass, but your body and mind have a way of telling you it needs help.
done on metastatic patients, or patients who are outliers? I imagine they feel neglected too. In the U.S., part of this problem may have just been addressed with the signing of the 21st Centuries Cures Act. The rest of the world however may not have a course correction, so we need to be able to recognize that in order to have equality, we need to point out the inequities. Then instead of cutting the pie smaller, we need to bake a bigger pie. We need to break down barriers, and share information. More and more we see that the driving mutations in different disease groups are the same.
These Are My Scars 
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