#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

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.screen-shot-2017-02-26-at-5-35-29-pm

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.

screen-shot-2017-02-26-at-5-25-12-pmShe 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.screen-shot-2017-02-26-at-5-27-34-pm

AM

 

 

 

 

 

 

Even Warriors Get the Blues #BellLetsTalk

Today is #BellLetsTalk Day, a day where, here in Canada we have a chance to talk openly about mental health. That’s not to say we shouldn’t be talking about it every other day, but on this specific day Bell Canada will donate 5¢ for every mention of (#BellLetsTalk) in social media. So please share this, a text, or a tweet for mental health.screen-shot-2017-01-25-at-3-49-45-am

Even before being diagnosed with cancer, I battled with depression and anxiety. As early as my late teens in high school, when it felt like I had an elephant on my chest, or when my heart would beat so fast it would take my breath away. I didn’t know it back then.

It came around again after a time I had gone through a number of changes and losses (the diagnosis and death of my father from cancer, the break up of a long term relationship, changing universities and losing a year, graduating, finding and losing a job, finding another albeit crappier job) and hadn’t realized I was depressed until much later. It literally took not being physically able to get out of bed for three days for it to click that there was something very wrong. When I did get up, I promptly sought the help of my GP who referred me to a psychiatrist and put me on medication. I chose to go to therapy in addition to medication, which helped me reclaim my life.

So when I received the earth shattering news that I had cancer, I anticipated that depression might creep back into my life, so I wanted to be proactive, because frankly, life is too damn short to be depressed with or without cancer.screen-shot-2017-01-25-at-3-51-34-am

Initially, I was so focused on treatment and getting better, I didn’t think about how I felt. I knew logically that I should allow myself to feel whatever feelings I had, but what happened was the opposite. I felt so blessed that I was supported, loved, “healthy” and tolerating treatment so well that anytime I did start to feel “negative” emotions or feel sorry for myself, I’d quickly beat myself up for it. I mean how dare I feel bad when I was so lucky!! Once I completed treatment, I found myself with a lot more time, and consequently, a lot more time to think. This was when I began to feel the emotional fallout of my diagnosis.

As open as I was about my story, I always held back what I really felt. I went around with a smile on my face all the while hiding my fear and anger behind a mask. The only time the mask came off was when I was in the presence of other Young Adult survivors.

All the emotions that were suppressed around everyone else bubbled up and escaped when I would talk to other survivors. I was able to express my fears to them and not be afraid that they would fall apart, or become fearful for me, I knew I wasn’t burdening them like I would with my family. They got it, because many of them wore the same mask, they could see past the BS of “I’m fine” and they called my bluff.

To try to circumvent depression I was proactive, by seeing a physiologist. I went religiously hoping that I’d avoid the “blues” but it didn’t feel right, so sought help through my hospital. What I really wanted and needed was someone who had experience with cancer patients. The second time was the charm, but still I found myself to be extremely volatile. I imagine living with me at that time would have been akin to living in a minefield, you never knew when I’d explode.

I thought that depression would come to me in paralyzing sadness like it had before, that way I could recognize it, but it didn’t, it came to me in red hot anger. I don’t know where all the anger came from, but it burst out of me, for the trivial minute things, and was usually directed towards the people I loved most.

Again I was oblivious that I was experiencing depression until I wanted to physically hurt someone out of anger. It was that moment that I realized I needed more help. Talking wasn’t cutting it and as much as I didn’t want to take pills, I knew I had to. I am not advocating anti-depressants, they are not for everyone. In my case, they really help me function and regulate my mood so it’s not as extreme. In addition to medication, I seek counseling regularly, attend a Young Adult support group as often as I can, and meditate regularly.

There is no road map out there to navigate cancer*, no right or wrong way, you just do what you have to do to get to the other side, the truth is, what has happened is a trauma, a loss, a life altering event. Despite being grateful for being alive, we still have to mourn what we lost, whether its opportunities, time, or the ability to have a child, denying those feelings will only come back to haunt us. So please, allow yourself to grieve and feel. Seek help, talk to your peers, talk to your doctor, find a support group, reach out. Life is too short to be depressed but even cancer warriors get the blues.

*This statement is true for so many situations, from post-partum depression to the death of a family member to the end of a marriage. There is no right or wrong way to feel, but if you are not your normal self, talk to some one. If you are in crisis please call 911 or go to your local hospital.

AM

Resources:

Bell Let’s Talk  Dedicated to moving mental health forward in Canada, Bell Let’s Talk promotes awareness and action with a strategy built on 4 key pillars: Fighting the stigma, improving access to care, supporting world-class research, and leading by example in workplace mental health.

Canadian Mental Health Association  As a nation-wide, voluntary organization, the Canadian Mental Health Association promotes the mental health of all and supports the resilience and recovery of people experiencing mental illness. The CMHA accomplishes this mission through advocacy, education, research and service.

KidsHelpPhone  Kids Help Phone is a Canadian and world leader known for our expertise and continuous innovation as Canada’s only 24/7 counselling and information service for young people. Since 1989, our trained, professional counsellors have been listening to kids, often when no one else can or will. We are always there – supporting young people wherever and whenever they need us most.

We Aren’t Rivals, There’s Just Lots of Work To Do!

Its snowing again and I can’t sleep.

Maybe its because I can’t stop thinking about an article I saw online. Even the openning lines seem to fan the fires of competition, when in most cases there isn’t any. My knee jerk reaction is that this is lazy writing. It builds conflict between disease groups by providing “sound bite” comments as proof and then complete ignores the issues faced by patients.

Let me begin by saying, I think all cancer is awful and never once have compared myself to my peers whether in the lung cancer world, young adult world, or in the cancer world at large. I have lost too many friends to count from every type of cancer, perotid gland, ovarian, adrenal gland, oglidendroma, etc., so I really try not to discriminate.

Articles like the one above piss me off because they skirt the issues, so let me make them clear and plain for all to see.

  • screen-shot-2016-12-17-at-6-18-13-am
    NIH funding

    Not all cancers are funded equally – That means funding for research and publication of said research is laking in many cancer groups. When we compare disease groups in this sense, we are merely trying to state the disparity. For purpose of this arguement, I will compare lung cancer funding to breast, and prostate cancers. The facts are that for every patient who died form their respective disease, a lung cancer patient “received” $1479 in research funds, a breast cancer patient “received” $19250, and a prostate cancer patient “recieved” $9432, I don’t imagine those numbers have changed much *since 2012. screen-shot-2016-12-17-at-6-23-51-am

Just looking at the above, it is evident that there is a large gap in funding. This means researchers in the breast group are able to fund, publish, and present more research. One should also ask if there is a disparity within each disease group. Is there research being screen-shot-2016-12-17-at-6-23-41-amdone 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.

  • Access to patient resources is different – As a patient trying to access a support group or assistance with services, I can tell you there is very little out there for patients with some cancers or diseases, where as there can be a glut for others. Even as a young adult with cancer it is difficult to access the services needed to cope with a cancer diagnosis and the reprucussions of treatments. The advent of online groups and social media is wonderful because people can connect, but groups can often be hard to find or “word of mouth” where as I can almost guarantee there will be a breast or lymphoma group in every centre. Again, the comparisson is made to illustrate the inequity, not to spur on competition.
  • Perception is different – I can attest to the stigma of having lung cancer. Any and almost every time I inform someone that I have lung cancer, the first thing I am asked is whether I was a smoker. I have also had people let me know about services they provide in the cancer centre when I am wearing my pink scarf, only to tell me how unlucky I was not to actually have breast cancer (I swear this happened) once informed I had lung. The truth is, most people assume if you got lung cancer, you must have gotten it from smoking. This illustrates the need for the lung cancer community to educate the public (and some medical personnel) that there are many risk factors to getting lung cancer (Radon, genetics, the environment, having lungs, smoking, unknown factors), and that smoking is a risk factor for many diseases, like heart disease, tooth decay, oral cancers, COPD, etc. The truth is, there is a stigma attached to having some cancers. Let’s get it straight, NO ONE DESERVES CANCER!!!!
  • Cancer is not one disease – The word cancer represents about 100 different diseases, and each one varies with the individual it effects. We are just now learning what drives some cancers, but there is so much that isn’t known. How can anyone possibly say all cancer is the same, no it isn’t. Not in the way it is diagnosed, staged, treated, maintained, long term side effects, recurrance rates, mortality, etc. What is the same is how profoundly it effects every single person it touches.

That is why I’m pissed off. They totally ignored all of those things and made it look like we can be catty children comparing ourselves for some sympathy prize, well I’m calling bullshit.

Cancer patients, at least the ones I know, and I know a few, young and old, from all over the planet are so far from this picture they paint that if they saw this article I think they’d either be hurt, apalled, or laugh because they are the most intelligent, compassionate, generous, kind, interesting people I have ever had the privilege of meeting. They have been through upheaval; poisoning (through radiation or chemo); some have been ripped open; they have gone through therapy (physical or psychological); have gone back to work; to school; retired; have traveled; become advocates and educators; become researchers; become parents (grand parents); become husbands or wives; recurred; and some sadly have passed on. So please give us more credit that calling us rivals.

Rather than write a bait-click article, do a little digging and write about the issues.

AM

*Figure 3 & 4 taken from Lung Cancer Canada, Faces of Lung Cancer Report: Research and Analysis of the Lung Cancer “Waiting Game”, 2016