#GivingTuesday

Screen Shot 2017-11-28 at 9.25.44 PMAbout a year ago, I wrote about Awareness and Action, That they are vastly different things. One is the actual act of something, the other is passive, and involves doing nothing. That’s right, nada, Zilch. Zero things are done. Bupkis. So in the dying hours of this Giving Tuesday, I want to remind people of just that. We should act and give, not just today, because we have been sold on a “gimmick”, but because we want to. Often even every day. It can be big or small. It also doesn’t have to be money, it can be time or a good deed. We have gotten too used to throwing awareness around, that nothing really happens. Lots and lots of inaction.

So why do we need a reminder?! Goodness and giving should be a no brainer, right?!

Is it that we get so wrapped up in our own drama, that we don’t see, or make time? AreScreen Shot 2017-11-28 at 9.26.08 PM we keeping score? If we are, then we shouldn’t, because life owes us nothing.

So I’m reminding you, Awareness is great, be aware, but also act.

I’m leaving this here, because I have to.

Be kind. Be good. Be present. Be generous. Give. Be well.

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Organizations I love.

Lung Cancer Canada

Young Adult Cancer Canada

First Descents

Save Me Dog Rescue

T’was the Evening of Hope

November is Lung Cancer Awareness month and tonight is Lung Cancer Canada’s annual  Screen Shot 2017-11-23 at 4.18.11 PM.pngCasey Cosgrove who was the MC and truly synonymous with this night. Casey was such an integral part of this organization and made a huge difference to so many people dealing with lung cancer by not only sharing his own experience but by being a relentless advocate for the cause. On a very personal level he was a dear friend who I admired and miss very much. My heart is hurting.

Tonight won’t be the same without Casey but we will carry on best we can and try to continue the work he was so passionate about.

The above was written by my dear friend Roz Brodsky (A 3x lung cancer survivor), her words captured my feelings so well, that I asked to share them.

Screen Shot 2017-11-23 at 4.26.28 PMI wish I could say that “if you didn’t know it was Lung Cancer Awareness Month, you’re living under a rock!”, but that is not the case. Most people I have asked were surprised. Well of course they were, we don’t have white/pearl/clear ribbons everywhere. We don’t have cement trucks with our message spread across it; we don’t really have walks, or Runs for the Cure. What we have is misinformation, apathy, and inadequacies.

I can’t tell you how many smoking cessation ads I have seen. Horrible in their depiction and so stereotypical that they add to the stigma and apathy. I am all for helping people quit, I personally believe we should treat an addiction, like an addiction, not a bad habit. I also think these ads should be part of a campaign strictly for cessation and illustrating ALL the diseases it is a risk factor for.

The sad part of associating these two things is that patients like so many others, and myself have to defend ourselves or tell people we are “Non/never smokers”. We shouldn’t have to, because we both have the same thing in common, lungs. The point being, it can happen to anyone at any age.

I have been radio silent this #LCAM because I have so much to say, but am so discouraged and tired of banging my head against the wall. I don’t know what it will take? It’s not the lives lost 1.59 million globally, or as my friends in the US will tell you #433aday, which is the number of Americans that die daily from this disease. We would take notice if a jumbo jet plummeted to the ground, right? Why can’t we see that this is happening daily!

I have posted a statistics laden post the last few years; I’m not going to do that again. What I Screen Shot 2017-11-23 at 4.26.14 PMleave you with is, that Lung Cancer unbiased, it comes for everyone, regardless of age, sex, creed or colour, because we all have lungs. Anyone can get lung cancer.

Be Well

AM

Konichi wa Nihon

So today is the big day, day one of the IASLCs World Lung Cancer conference! After a few days getting our feet grounded after so so much travel, I’m ready to report! 

So far it’s a busy day (what an understatement). I type this as I wait for my second big session. I’ll be back later with a summary of my day, and a few highlights of the conference’s first day. Until then, you can keep posted by following on Twitter (@thesearemyscars, @iaslc, #WCLC2017, or #LCSM, or Facebook). 

Sorry I can’t live link, but I will later on. Blogging by phone has its limitations! 

Sayonara for now, 

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

Indivisableguide.com

A Plea for Help

Hello dear readers.

I have a favour to ask you.

I was contacted today by a young mother seeking help for her 4 year old son who has ALK MYCN driven neuroblastoma. They have been fighting for almost all of his short life and time is running out. What they need is access to Lorlatinib, whether through trial or off label. Rivky

“My son is refractory with rapidly progressing disease which is overtaking him. Last Thursday he walked in park and kicked ball, today he is immobile with his ilium destroyed by disease…We traveled around the world (from UK to Sloan Kettering and to Germany most recently ) to save him but he keeps relapsing. Since his latest progression on last week’s scans we are sent home on palliative care. We are in sheer disbelief and devastation. We love him so much. We literally left no stone unturned. Today, lorlatinib went into phase 1 trial for neuroblastoma, but my son doesn’t fit the study entry criteria, despite being one of not many children who express ALK amd mycn, for which lorlatinib has preclinically shown to be effective even as single agent (this is saying something big). We don’t have the time to wait and see if he would fulfil the entry requirements and his oncologist believes we are doing him no favor by keeping the fight. And so I couldn’t yet convince her to apply for lorlatinib on compassionate use. My son was on ceritinib but progressed thru it, he is refractory to chemo and has to great a disease burden for immunotherapy. All we have left is really the pain meds.”

If you can share this, or if you know of someway to help please contact me.

Time is a commodity not many value until it is taken away.

Then it becomes priceless!

AM