Nine Years, Nine Lives

Today is a pretty remarkable day in my life. The day my life was changed, utterly and completely – nine years ago. When I think about that, I am brought to tears. After all I wasn’t supposed to be here. If it weren’t for luck and scientific breakthrough, I wouldn’t be. There are times I wonder why I am, still here that is. If it were any other kind of anniversary, I would be celebrating with a party or a cake. Because it’s my cancerversary, my day is spent reflecting on my blessings and thinking of all the dear friends I have lost along the way.

In years past, I have been so busy that the day has almost gone by without notice, can you imagine? A day not thinking about cancer, a normal day. I don’t have many of those. 2015-08-26 21.49.543,285 not normal days, just off, abnormal like the cancer. Some days I feel every second. On other days, time flies.

I  live a condensed life, condensed experience, condensed joy.

Joy.

 

This year is kind of a monumental year. I turn 40 in just more than a DSC05142month. 40! Middle aged (when did that happen :o)! Believe me, I didn’t think I’d ever see my 35th, let alone my 40th. When I was diagnosed nine years ago, I didn’t think I’d get to do a lot of things!

I didn’t think I’d ever be able to buy a car or a house. I didn’t think I’d get to travel. I didn’t think I’d get the chance to fall in love. I didn’t think I’d ever advocate for change. What did I know!? I had no idea what potential my life had. I had no idea of what I could achieve. I had no idea what life truly held. I had no idea what it meant to live. I mean really live.

IMG_2159It shouldn’t take critical or terminal illness to teach us that lesson. 2016-07-07 18.54.45-1Why can’t we all live genuinely, authentically, passionately, no time for B.S. kind of lives.

Time.

When you realize that time is really the precious commodity that everyone is after, you begin to value it over everything else. Things are just thing and are transient. Money can be made, of course it can buy comfort, but it’s just a thing. Time on the other hand provides us with opportunity. Opportunity to spend it on doing what we love. Opportunity to spend it wisely. I say that, because for us, it’s limited.

Our clocks start ticking they day we are born. So we can chase money and fancy things, and spend all that time working and running in circles. Or. We can open our eyes and see how beautiful the sunrise is, especially when you are with someone you love. How magnificent it is to experience the cultures of the world. How wonderful it is to be loved.

Love.

I wouldn’t be here without Love. The love (and kindness) of my medical team. Love from my family and friends. The love of my dogs. The love of my life. Thank you all! I couldn’t do it alone. I know together, we move forward.

To another nine years,

AM

 

Look out Yokohama

Screen Shot 2017-08-22 at 4.14.12 PMIt has been a little while since I have posted and much has happened since the last post. One of the most notable things is, I was selected and awarded the IASLC’s Patient Advocacy Travel Award. This award allows me to travel to Yokohama, Japan for their annual World Conference on Lung Cancer. JAPAN!!! I cannot tell you how excited I am. For one, I get to travel to a country that I have always wanted to visit. I get to soak up the latest information on lung cancer research and practice. I get to network with other patients, advocates and experts in the field of lung cancer research, and I get to go to Japan. Have I mentioned I’m going to Japan!?Screen Shot 2017-08-22 at 4.05.37 PM

Seriously though, I want to take this opportunity to share what the IASLC does and let everyone know about their Foundation Cancer Care Team Award.

The International Association for the Study of Lung Cancer (IASLC) is the only global organization dedicated to the study of lung cancer. Founded in 1974, the association’s membership includes more than 6,500 lung cancer specialists in over 100 countries. IASLC members work to enhance the understanding of lung cancer among scientists, members of the medical community and the public. IASLC publishes the Journal of Thoracic Oncology, a valuable resource for medical specialists and scientists who focus on the detection, prevention, diagnosis and treatment of lung cancer.* For their mission statement, more information and resources, please go to their website.

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Nominate Your Care Team Now!

The IASLC is excited to announce the creation of a new award, the IASLC Foundation Cancer Care Team Award, designed to recognize outstanding patient care and honor multidisciplinary teams working together to provide the highest quality cancer care.

Nominations will be accepted from all over the world. The winning team will select one representative to attend the IASLC 18th World Conference on Lung Cancer, for which IASLC will provide monetary travel support. Learn more and nominate a team for the award. Please contact them with any questions: membership@iaslc.org.

As always, be well.

XO AM

*taken from https://www.iaslc.org/about-us

Mother’s Day and Coming Full Circle

Screen Shot 2017-05-14 at 9.58.24 PMIt’s Mother’s Day today and I have to admit that it can be a bit of a challenging day for me. As progressive as I am and know that one is not defined solely on one aspect of their life, not being a mother is well a mother. After all it’s a day explicitly for celebrating our mother’s, but what is a mother?Screen Shot 2017-05-14 at 9.04.55 PM

Babies are popping up everywhere, and kids are extra cute at least it seems so especially today. There is nothing like other people’s joy serving as painful reminder of the things you cannot have. Please don’t get me wrong, I am overjoyed for their happiness and the blessing of that new life, but it’s just that it’s an in your face reminder that I will never be a “mother” and some days it just feels like cancer just robs you of everything.

Screen Shot 2017-05-14 at 9.02.09 PMFor a while I thought that this sense of loss was more about feeling what it is like to be pregnant than actually being a mother, but I now know that it is the whole cycle of life that I am missing out on.

Early on in my diagnosis, I had the wherewithal to ask about fertility preservation. I was referred to an onco-fertility specialist literally days before my first treatment. I remember vividly sitting in the Dr.’s office, thinking I had everything under control until “harvesting, embryos, and sperm donors” were mentioned. I actually started having a panic attack. My head swam with questions, “What if I meet someone and they don’t want my sperm donor embryos,” “What kind of qualities do I look for in a donor”, “What do I do with my embryos if I don’t use them?” “I can’t donate them, pieces of me will be out there, but I don’t know if I can destroy them,” the thoughts were consuming.

Breathe, just breathe I thought.

My saving grace was my oncologist deciding that there just wasn’t time to delay three weeks to harvest my eggs. So they shut my reproductive system down while I did chemo. It seems strange to have such a monumental decision made for me, but it was a relief that I didn’t have to decide, I realize now, I wasn’t ready and as much as I wanted to consider the options, the truth was, there wasn’t time and I didn’t have anyone to turn to for unbiased advice.

After treatment was finished, I saw the fertility specialist again to revisit whether I wanted to harvest and preserve my eggs. At that time, I decided that I would harvest eggs, but I didn’t have the finances to proceed and although I would be getting the cancer discount of 50% off the regular price, I waited.

Once again, the decision was made for me, my cancer was back, this time it had spread and I realized that I might not get out of this alive. Parenthood would have to be something that was sacrificed in order to save my own life. Even though it’s now eight years later and I am stable and married, my choices are still limited to acceptance of my infertility, except now I am actively trying to prevent pregnancy.

Screen Shot 2017-05-14 at 9.18.26 PMIt is amazing how things can come full circle. Having the option of being a mother taken away from me made me want it so much more, but having been through treatment and knowing I will live the rest of my life with cancer and the possibility of recurrence or progression at anytime I am steadfast in deciding not to have a child. I mean, how can I possibly put a child through losing their mother, or risk passing on my faulty genes or risk my own life just trying? Had I never encountered cancer, I wouldn’t have a problem trying to get pregnant at 39, but that is not the case.

Even if I could get pregnant, my ovaries have been exposed to so much radiation from scans and treatment my eggs would be fried, they have been exposed to systemic chemotherapy, and they are 39 years old, the odds of having a healthy pregnancy is not be in my favour.  As it stands, the treatment I’m on counter-indicates pregnancy. The drug inhibits a protein (ironically ALK) that is used during fetal development and the effects on a growing fetus are unknown but likely detrimental. I could stop treatment, but that would mean I’d have to stop my meds for as long as it takes to clear out of my Screen Shot 2017-05-14 at 8.58.18 PMsystem, plus the time it would take to get pregnant and finally another nine months until delivery. I might be lucky enough have the cancer not grow or grow slowly enough to make it to delivery and restart treatment, but then there are no guarantees that I’d respond to treatment again. It would be playing Russian roulette.

 Maybe it is a selfish decision, maybe it is for the best, but there is nothing like holding and smelling a new baby to make you doubt your decisions. I don’t know what it is about the new baby smell that triggers every cell in my biology to want a baby, but it does and it’s hard to resist that siren’s call. For a long time, I couldn’t bring myself to attend baby showers or even hold a newborn because it was so upsetting, but I have gotten better. Knowing something in your brain doesn’t make it any easier to knowing it in your heart. I don’t regret any of my decisions and it has taken a long time to get to a place of acceptance. I still have my bad days, today is one of them.

Screen Shot 2017-05-14 at 10.07.25 PMI am very lucky though, I am healthy and happy and have a wonderful little family (Me, my Patrick and all the fur babies, Lacey, Finn, Mischa and Borat), and have been blessed with a most incredible mother who raised and cared for me (still does) in good times and in bad and taught me how to be a strong woman. I have a wonderful mother-in-law who is kind and thoughtful and who so openly embraced me as a daughter and know through her son what an amazing mom she is. I have so many women in my life who inspire me to be great and to do great thing because of their example of sacrifice and grace. So I don’t have my own biological children and never will, but I have known the kind of Screen Shot 2017-05-14 at 8.56.55 PMlove it takes to be a mother.

To all the would be moms and mothers who have lost children, adoptive moms, and surrogate moms you deserve to be celebrated today too. So to all the mother’s out there in whatever way you are defined, Happy Mother’s day to you.

AM

 

When Worlds Collide

Screen Shot 2017-05-04 at 8.30.28 PMToday is May the 4th and for us Star Wars Fans out there it’s Star Wars Day and boy did I did feel at one with the Force. For a short time today I was truly happy because I was finally able to see my Oncologist and not one of her fellows (even though they are all lovely and very competent) because it’s just not the same. For months now, I have been struggling with being just good and not NED (No Evidence of Disease), it’s been quite an ordeal. This is in part because I have had access to the scan results  and the fellows (bless them) have been saying “it looks good, no change,” the reports of course say that the nodules in slide x remain unchanged, so of course I see remain and think “well there’s cancer there!”

It was a tough pill to swallow (literally pills) going from being a super responder on Xalcori (yes its a thing) to just being good. For an over-achiever, this is not ok, especially when Lorlatinib is supposed to be a better drug. Well today I found I wasn’t just good, I’m a super responder and I’m NED!!! Hooray!!! So all that worry and mental gymnastics for nothing. Now that I’m relieved for myself, I can channel my energy into outrage for my friends in the US.

Maybe you haven’t heard or don’t know that the Republicans and the House of Representatives voted to support a heinous bill to replace the Affordable Care Act (AKA Obamacare). They voted despite not knowing if it would save lives or harm people. If yoScreen Shot 2017-05-04 at 9.28.07 PMu are looking for impartial, you won’t find it here! Many and by many I mean millions of people will have to pay tens of thousands of dollars more to even get insurance or care based on their pool.If I lived there I would be in the two to tiers and would have to pay at least 150K a year and that doesn’t accept for the expensive pill I need to live. Even if I was at the top of my pay grade this is way more than I could afford, so without it I would die. Thats what my friends are facing. It sickens me! It also makes me so incredibly thankful that I was born in and live in Canada. Our system isn’t perfect, but you can bet your ass that if you’re in trouble you will be guaranteed care.

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I wanted so much for this post to be happy and for the most part it is. I wanted to just update everyone and summarize my weekend at the DC Hope Summit, but the more I think about is, the sicker I feel.

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Look at all those beautiful survivors!! Also that’s Katie hope dealer extraordinaire 🙂

Last weekend I was so incredibly priviledged to be able to attend LUNGevity’s Hope Summit in DC through a donor scholarship (and the very hard work of resident hope dealer Katie Brown and everyone at LUNGevity). It was an incredible experience! It’s not often that one is able to meet so many others like me. There were people from all stripes, young, old, survivor, supporter, newly diagnosed, those who have been around the block and everything in between. Before this, I couldn’t have even imagined having 340 other survivors and caregivers in one place. It was truly beautiful and tragic all a the same time. Beautiful because there were so many of us, tragic because there was so many of us. Its complicated.

I almost always need a few days to decompress and process my experiences because they really are massively emotional experiences, and I say that in the most positive way. There were so many ALKies like me, and ROS1ders, those with EGFR, Cmet and those without a driver mutation, regardless of who you were, there was someone there that knew and understood your experience.

It was just wonderful to see everyone talking and sharing, crying and laughing, taking hope from hearing someone else’s story and sharing their own, maybe empowering someone else. Many new advocates were born over the weekend and some old ones refuelled. Now, more than ever, they will be needed.

I have always marvelled at the close knittedness of the lung cancer community (so many of us knew each other online before ever meeting face to face) and how much sharing happens, how much progress is being made with so little. So little attention. So little funding, and yet research has happened, awareness is happening, action is being taken and people are living better and starting to live longer. But there is still a long road ahead. But we are just starting and bills like the AHCA is a massive setback to us and to all others who are vulnerable and live on the knife’s edge. So my thoughts are with all of you who hoped for the best, and are hearing the worst, resist my friends. Resist with every breath.Screen Shot 2017-05-04 at 9.22.20 PM

Be Well and May the 4th be with you.

AM

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How to Love Your Body…When its Trying to Kill You?!

To say I have issues with my body is an understatement. It did, after all, try to kill me. Three times now, and possibly again in the near future.

So how does one come to terms with their body after something like cancer?

Work in progress comes to mind.

screen-shot-2017-01-30-at-9-54-55-pmOnce 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.

It has taken a while to realize how ludicrous it is to worry about something so trivial and superficial as putting on a few pounds, especially when I stop and think about what my body has actually been through in the last seven years. I mean, what are a few pounds when your body has been poisoned and radiated to the “nth” degree, not to mention cut open then poisoned some more.

My vain self wishes for my old body back, but my rational self realizes that this is where my body is and needs to be to be healthy and the two factions battle. Most days my rational self wins, but there are days when I go to my closet and nothing fits and I want to pull out my hair!screen-shot-2017-01-30-at-9-52-09-pm

The bigger issue for me is reclaiming my body and getting used to its new limitations. I hate to admit I have limits, but I do. On a good day, I feel like I’m a vibrant young woman, but most days, I feel old. I am constantly tired, my joints are stiff, and my legs and feet are swollen. Despite this, I still try to be as screen-shot-2017-01-30-at-10-03-21-pmnormal 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.

screen-shot-2017-01-30-at-9-58-27-pmHaving 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.

An added bonus to all this wonderfulness is the edema or swelling, acute neuropathy and arthritis I experience. None of these side effects are predictable or effectively treatable. The neuropathy, which for a long time was a mystery, turns out to be a side effect of the chemo I received. When it happens, it makes anything that touches my skin incredibly painful. Pair that up with the swelling and arthritis and I am one sexy beast.

screen-shot-2017-01-30-at-10-29-28-pmI 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.

You might think that with all these complaints, I am not thankful or grateful for the treatments I have received, but it really is quite the opposite. These obstacles are just speed bumps. I gladly take these inconveniences over being sick or dying any day.

screen-shot-2017-01-30-at-10-36-05-pmSo 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.

I am slowly learning not to beat myself up when I get tired, when I can’t do something I used to find easy, or when I’m gasping for air. I’m learning to accept my less lean self and love every inch of it, because it has been though the ringer and remains true. It’s a steep learning curve and there are always setbacks.  So the going is slow, but I will take this body for better or worse and learn to be kind to it.

AMscreen-shot-2017-01-30-at-10-05-27-pm