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Pride…in the name of life

Today is Pride (at least was a few hours ago) and on a day where everyone is celebrating Screen Shot 2017-06-26 at 12.57.39 AMcoming out of the closet, I have gone into mine for a long over due clean out. Both literally and metaphorically.

As I painfully try-on every stitch of clothing I have, I am coming to the realization that there is way too much I’m not wearing, way to much that doesn’t quite fit, and way too much that’s way too small and as I look at the piles that have formed on my bed I realize that I’ve been holding on to these things that don’t serve me and actually burden my life too hard. It dawns on me that when you hold on to something too tightly, there’s no space for anything else. This can be clothes or thoughts or identities.

Screen Shot 2017-06-26 at 1.13.09 AMThis past year has probably been the hardest I’ve ever had. Harder than when I was diagnosed, harder than recurrence, harder than when my father was sick and dying, and even harder than all the years living through his alcoholism.

This year I have really struggled with my mental health. The following will likely come as a shock to many in my life who care very deeply for me and I want to assure you that I am in counseling and I am on medication, and would never ever actually hurt myself. I am also very sorry you are reading this rather than hearing it from me personally. Some things are impossible to say face to face and can seem easier to write it down, trust me its not. Up until this point I have hidden this admission from almost everyone, including myself.

My internal dialogue this year has been different than in the past. Lately I have asked myself many times “what am doing this for?” (as I take my trial meds) or tell Screen Shot 2017-06-26 at 1.06.03 AMmyself “I just want to crawl under a rock and die” or “I wish I was dead”. Scary thoughts. Logically I do not want to die, I want to live. In fact I want to live in vivid colours, Screen Shot 2017-06-26 at 1.31.55 AMopenly and honestly. Admitting to myself that these dark thoughts are happening is a start. It is the number one thing I will address with my psychiatrist, because I want to live.

So whatever the skeletons are, go into the closet and bring them out. Shine the brightest light on those demons and then let them go. Let them go so you can embrace life.

Screen Shot 2017-06-26 at 1.01.25 AMTo all my friends celebrating Pride, have a great day and always be proud of who you are and what made you.

To all my friends celebrating Eid, may you have a blessed day.

AM

 

Happy Father’s Day

I’m having a tough day today. I slept most of it away, because I could feel the guilt and sadness building last night. For the last few years, it had been a sad day, one filled with feelings of loss and now feelings of guilt. Screen Shot 2017-06-18 at 9.33.18 PM

For much of my life, I didn’t have a very close relationship with my father. It was often one of conflict and avoidance. I remember as a child I would avoid him, tip toeing by his sleeping frame and slipping by the couch to sit by the TV, sneaking the converter and changing the channel hoping the disruption wouldn’t wake his snores. In my teenage years I was far more rebellious. Alcoholism is a poison and its venom affects every member of a family for a very long time.

By the end of high school, our relationship was almost toxic. If it hadn’t been for my boyfriend at the time, I likely wouldn’t have had any empathy for my father at all. In my last year of high school and just before graduating an incident happened. It was the straw that broke my mother’s back. She gave him an ultimatum. You stop drinking and get help or you get out! He stopped. Cold turkey.

Screen Shot 2017-06-18 at 9.51.45 PMFor a very short while, I got to see the man behind the booze. He was the kind, funny, gregarious man my mother described, the man she married so long ago, the man I barely knew. Later that year I went off to University in London and moved out. When I’d call, my mother would say your father misses you. When they’d visit, he would kiss my cheek and slip me some money and whisper “don’t tell your mother” while wiping his eyes.

On my first day home of spring break, I entered an empty house. At that time, we had no cell phones, so I called a neighbour who told me that my parents went to the hospital. I Screen Shot 2017-06-18 at 10.00.09 PMimmediately called my brother and we went to see what was going on. My father had been suffering from a “cold” for a while and finally had broken down and gone to see the GP. The doctor ordered x-rays, one look told him something was very wrong. He told my parents to go emergency immediately, they did. A week later we were told he has terminal mesothelioma. The months that followed were fraught with joy, sadness and every emotion in between. I decided it would be best to come home and be with my family, a decision that I am so glad I made. We often wonder what could have been instead of what is, I have too. I regret nothing,

His last days were excruciating, he was in so much pain despite the pain pump and morphine, every breath was agony. It was during this time he told me he loved me. It was the first time I heard it from his lips. Shortly after that he was sedated so he could be comfortable. No human should suffer like that. In the end he died peacefully with all of Screen Shot 2017-06-18 at 10.06.09 PMus by his side.

Since that time, I have seen my brother become a father. A man who is devoted to his family. A man would bleed and stand in front of a bullet for his daughters. I know so much of how he is was shaped by and sometimes inspire of how we grew up. He is a great father, one who I think if our dad would have been proud of if given the chance.

And now the guilt.

I can’t help thinking that Patrick would have made the best dad. When I see him Screen Shot 2017-06-18 at 9.27.30 PMinteracting with his nieces and nephews I feel like I have robbed him of the gift of being someone’s father. I have told him this and he always reassures me that he is happy and fulfilled with mentoring the kids he works with and that he has his nieces and nephews. Maybe I’m stubborn and can’t let go myself, but I think he would have been so great, and part of me just feels terrible that I can’t give him that one thing. So today is a tough one.

Now that I have gotten that off my chest, I want to wish all the father’s who are, were, and who want to be out there a day where you are appreciated and loved.

Screen Shot 2017-06-18 at 9.34.05 PMTo my new father, the dad I married into, I want to say thank you and I love you. Thank you for your love and acceptance, and I love you, for the dad that you are, and for the man you shaped with your love and patience.

AM

 

It’s a jungle out here

life and breath: outliving lung cancer

Pretend for a moment that one hundred people are standing in front of you. The only thing you know about them is that they all have lung cancer. One at a time, each person comes and stands beside you and shares some intimate detail about their lives. Sometimes you sense that you have much in common with the speaker, sometimes little. In each case you get an overwhelming sense of their humanity.

You are thinking about how you would like to get to know some of them better when I drop a bombshell: only eighteen of these people will be alive in five years.

It shocks you but I assure you I have not told you this merely for dramatic effect; statistically speaking, this is an actual scenario. The five year overall survival statistics for all stages of lung cancer cancer are only 18%. At stage IV, that number drops…

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Intentional Magic (Fog Cancer)

Intentional magic describes the alchemy that happens when you bring together a group of random people (who happen to be between 18-40) that share a common experience. That the common experience is living through or with cancer. You’d never know that was it, at least by looking at us. Young adults with cancer making lemonade from our lemons. Cancer is different for young adults.

When you are a young adult that has been diagnosed with cancer, it changes your life profoundly, in ways you don’t even know yet, and won’t know how far the ripples reach until you are looking over the wreckage of your life. It changes everything. It changes who you are. It changes who you will become. Nothing is the same as it was and nothing will be what you thought or planned for. Now add in that most of the patients in the waiting room are your parents age or older (yes I had medical staff talk to my mother instead of me and have had to correct them). That the majority of funding for support, care and treatment is focused on 45+ or 18 and under. That you will likely never get insurance, may never have children or will suffer from reproductive difficulties, are at risk for secondary cancers, and feel isolated and alone in an experience that few will share at lease at this age.

Now put these people all together and its magic.

As a young adult with cancer and a rare one at that, I can attest to the feelings of isolation and loneliness, confusion, frustration, grief, anger and sadness at losing the trajectory I had planned for my life. I have mourned my fertility and financial security. I have feared for my life, and sometimes still do. I know scanxiety, and loss. So much loss, my own and of others. Too many to count. It physically hurts to count, the beautiful vibrant lives this community has lost. I know, and so do those at Young Adult Cancer Canada. That’s why they are wizards. They create this intentional magic every year and every year its a homecoming for me. Every year we gather as a group to learn, laugh, cry, dance, and remember.

Its magic!

It has been about a week since I came home from my trip to Newfoundland for YACC’s Fog Cancer conference and I have say it has been a challenge getting back into the swing of things. I normally expect to experience withdrawal, but this year it seems even harder. I don’t know why, maybe its because I just turned 39 and I fear my time in this incredible community is winding down, or maybe I over extended myself, or maybe I fear that one day it will be me being remembered up on Signal Hill. Whatever way, life hasn’t been as vibrant and comfortable as it was a week ago. I feel a little more alone, a little more isolated, a little more mired in my own crap. I miss the cocoon of just getting it.

AM

 

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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