Équipe de conseillers médicaux

Pride...in the name of life

Published: Mon, 26 Jun 2017 01:39:32 -0400

Pride…in the name of life

Today is Pride (at least was a few hours ago) and on a day where everyone is celebrating coming 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…

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Happy Father's Day

Published: Sun, 18 Jun 2017 22:29:24 -0400

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.  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…

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It's a jungle out here

Published: Mon, 12 Jun 2017 10:54:10 -0400

It’s a jungle out here

I certainly couldn’t say it any better than my friend Linnea Duff so I will let her words speak. Source: It’s a jungle out here

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It's a jungle out here

Published: Mon, 12 Jun 2017 10:52:48 -0400

It’s a jungle out here

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Intentional magic describes the alchemy that happens when you bring together a group of random...

Published: Sun, 11 Jun 2017 22:39:06 -0400

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

Published: Sun, 14 May 2017 22:30:27 -0400

Mother’s Day and Coming Full Circle

It’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 your life, but 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? Babies are popping up everywhere, and kids are extra cute at least it seems so especially…

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Today is May the 4th and for us Star Wars Fans out there its Star Wars Day, and I did feel at one...

Published: Thu, 04 May 2017 21:31:32 -0400

Today is May the 4th and for us Star Wars Fans out there its Star Wars Day, and I did feel at one with the Force because 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). 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 you 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.

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.

Last weekend I was so incredibly priviledged to be able to attend LUNGevity’s Hope Summit in DC through a donor scholarship. 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.

ALKies

All the YA’s except me oops 😦

Young Adults W/ LC

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.

Be Well and May the 4th be with you.

AM

Indivisableguide.com

We all need to fight lung cancer

Published: Thu, 13 Apr 2017 02:04:11 -0400

Source: We all need to fight lung cancer

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Surrogacy and the blues

Published: Tue, 04 Apr 2017 20:35:12 -0400

Surrogacy and the blues

Maybe it because my mood is like the weather today…fog clouds my mind and clouds fog my heart, while tears are on the verge of falling at any minute. Maybe it’s because I’m depressed…I’m switching my meds and on a clean out. Maybe it just because I hate hearing people be flippant about something that is tragic and a privilege and someone like me and many others out there just can’t do. I happened…

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A Plea for Help

Published: Thu, 30 Mar 2017 21:36:27 -0400

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.  “My son is refractory with rapidly progressing disease which is overtaking…

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Living with intention...Week 8

Published: Wed, 22 Mar 2017 11:34:53 -0400

Living with intention…Week 8

Hey folks we made it to week 8 in the meditation series and here we are at the end! It has been really wonderful to put this out there and to practice and re-fresh myself again, I truly hope it has helped you in some way. Hopefully as a result of your dedicated learning and practice, you may have noticed some  changes in you since you began. If you haven’t, now might be a good time to ask…

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Loving Kindness...Week 7

Published: Tue, 14 Mar 2017 20:39:46 -0400

Loving Kindness…Week 7

To say that this post is late is an understatement!! When I get writer’s block, I get writer’s block, and that’s exactly what happened…that then add a dash of perfectionism and you have a recipe for disaster! I don’t know why I can’t quite get a coherent piece of writing done around this week’s topic, which is Loving Kindness and how best to care for yourself. I have written and re-written this…

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Week 6...Kintsugi - Recognizing the Beauty in Broken Things

Published: Sat, 04 Mar 2017 23:01:25 -0500

Week 6…Kintsugi – Recognizing the Beauty in Broken Things

Last week was hard! I am still sweeping up pieces of myself and putting them back together. I have been broken before, so I know I’ll be ok. Stronger. Kintsugi is the Japanese art of fixing broken pottery, and its philosophy is rather beautiful. It recognises the beauty and value in broken things (more specifically pottery) and speaks to the breakage and repair of objects becoming the history of…

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Melancholy and the Infinite Sadness...Week 5

Published: Mon, 27 Feb 2017 14:59:22 -0500

Melancholy and the Infinite Sadness…Week 5

I’m melancholy today. It’s one of those days where I wish I could unzip my skin and I could become someone else. Just for today. I can’t so I just want to hide. Crawl under my covers, or be like a cat and shelter under the bed. I want to scream, but if I open my mouth to talk, I feel so fragile right now, I’m afraid I’ll break into pieces, and I just don’t have the strength today to put myself…

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Just Breathe...for Elizabeth

Published: Sun, 26 Feb 2017 17:40:21 -0500

Just Breathe…for Elizabeth

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…

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Amanda

Published: Fri, 24 Feb 2017 16:59:07 -0500

Words escape me and I can’t quite express what I’m feeling in the way I want to. Week 5 of our MBSR should be up, but I can’t bring myself to write the post yet. You see, I just found out today that a friend and fierce cancer warrior passed away last night. So if you can bare with me, that post will go up in a few days time. Losing friends hurts. I met Amanda about six years ago at a Young Adult…

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Recognizing Aversion – Week 4 No one likes things that suck, but sadly they are part of our lives....

Published: Thu, 16 Feb 2017 22:43:14 -0500

Recognizing Aversion – Week 4 No one likes things that suck, but sadly they are part of our lives. The suckiness of something can range in variety and gravity, but sucks none-the-less. 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…

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On this St. Valentine’s Day, I thought I’d share with you the story of how my...

Published: Mon, 13 Feb 2017 23:39:22 -0500

On this St. Valentine’s Day, I thought I’d share with you the story of how my husband and I met.

This is us :)

Now before I get to the meat and potatoes of the story, I must give you a little backgrounder. Before I got diagnosed with cancer, I didn’t date. Especially online dating. Like many, I had my reasons, but mainly, it was because I was so fracking busy I had no time to socialize with my friends, never mind strangers. So at that time, I figured, if something came around, it came around. My focus was my career. Of course, when I got sick, the main focus was on that, and getting better. So again, dating, not high on the priority list.

When I got sick again, I thought I was a goner. I figured it was time to get out there. I mean if I was going to die, I may as well have a little fun before kicking it. I decided to put my profile up on a few dating sites. I relegated myself to knowing I’d likely meet a few wackadoodles, because such is life. If that happened, I’d just politely thank and excuse myself and quickly extricate myself from the situation, pick up the tab and be gone, thank you very much. After all I have terminal lung cancer, I don’t have time to waste!

So here comes the good stuff.

I winked at Patrick and he winked back at me, at least that was how it was done on that particular site. I know cheesy!

Shortly after the wink, he sent me a message kindly asking if I would like his number. I of course said yes. I anticipated a call from him, but a week went by, then two, so I figured he had lost interest and didn’t think on it too much. Ok fail numero uno. No problem.

Then out of the blue, about a month later, I get a phone call and its Patrick. I almost didn’t answer because I was waiting to go into an appointment when he called, but he was so apologetic, I couldn’t resist. He said he had been thinking about calling all month, but he had been so swamped at work that he could never find the right time. He called because he had a few days off for Thanksgiving and his birthday and wanted to meet me. I offered to take him for coffee for his birthday. It was arranged that we’d meet at the Dark Horse Espresso Bar at 4 on his birthday.

As left my house to meet him, I remember thinking “wouldn’t it be funny if we ended up on the same streetcar?!” It would since I was coming from the west end of the city and he was coming form the east. So when I approached the streetcars at Spadina Station, I texted him to let him know I was on my way. He replied, so am I. There was such a crowd waiting to get on streetcars that day, I decided to wait for the crowd to die down and I got on the next one. I got on and went to stand where I usually stand at the back of the car in front of the back doors.

Even though I had waited, it was still jam-packed. After the streetcar passed College, a bunch of people got off and there was some space. So I texted him again saying, “I just passed College, I’ll see you at Dark Horse.” He replied with “me too.” When I looked up from my phone I spotted a guy that met the description Patrick had given me. I chuckled to myself because he was literally 5 feet in front of me.

Upon my realization, I texted “Are you wearing a grey hat?”

“Yes?”

“I think you are on my streetcar.”

At which time he had moved directly in front of me, but had his back turned. I watched as he looked about the streetcar trying to find me. Just before our stop, I tapped him on the shoulder. He turned, looked at me and said “You’re short.” (Oh God…here we go) “I’m sorry, I just mean usually girls I’ve met are taller than me. You’re awesome!” (Ok, you get one…and you recovered well).

At Dark Horse the conversation came fast and easy. He made me laugh, I felt like we knew each other already. We talked so much, we shut down the shop. At this point, I didn’t want the date to end, so I said “hey, are you hungry, I am, we should grab a bite.”

“Yeah! Absolutely.” So we walked a short distance on Queen St. and stopped in at little bistro. Again, the conversation came easy and we ate and talked and ate and talked until it was time for them to close.

We had met at 4 that afternoon and now it was 11:30, but time flew by so fast! He walked me to the subway, but before we said our good byes he says, “My room mate is throwing me a birthday party. Do you want to come?” As much I really didn’t want to say good night, but I was going to Ottawa the next day for a conference and really did need to get home. The funny thing was, he should have been at that party way earlier on that evening. I guess he didn’t want the date to end either. We parted ways and I was of to Ottawa.

The next day sent me a text me to say what a good time he had and we chatted away the 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.

As I wandered his apartment, I noticed the pictures he had of family, it was really nice. I knew that I liked him, I also knew I had a huge monkey on my back! I had been tormented all weekend and all though our date. I felt so deceptive by keeping my cancerous life from him. Did I wait to tell him, or do I break the news now so he’s not invested. From all I have seen, I need to do it sooner than later. He is too nice to get hurt.

After dinner, as we sat on the couch, I knew it was my opportunity (well it was nice meeting you), I took a deep breath and said, “I have something to tell you.”

“Oh, is everything alright?”

“Yes. But. Ok, how do I….It’s nothing that has to do with you, it actually me. I’m…I’m not an alien, but I am a mutant.”

“I’m sorry, what?”

“I’m a mutant, I have ALK rearranged stage 4 lung cancer. So I’d understand if you don’t want to see me again.” He took my hand and looked at me and said “My friend’s wife has cancer too, I think you guys would make great friends. I really like you, I’m not going anywhere.”

That’s how he stole my heart.

However you spend your Valentine’s Day, I hope you are healthy and happy.

AM

Gathering the Scattered Mind - Week 3

Published: Fri, 10 Feb 2017 21:57:19 -0500

Gathering the Scattered Mind – Week 3

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…

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Gathering the Scattered Mind -Week 3

Published: Fri, 10 Feb 2017 02:39:39 -0500

Coming very very soon!!!  Sorry for the delay!  AM

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