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

 

 

A Breath of Fresh Air

We must accept finite disappointment but never lose infinite hope.

-Martin Luther King Jr.screen-shot-2016-11-12-at-4-46-08-pm

For a very long time, lung cancer research had languished and little improvement occurred in treatments and patient care. Most required chemo, radiation, or invasive surgery, or perhaps a combination of all three. Despite these interventions, many patients died. It was a pretty hopeless time.

As recent as 7 years ago, targeted treatments were mostly theoretical, and immunotherapy a pipe dream. Today, both are realities and saving lives. The winds of change are blowing and hope is in the air.

I can tell you what it feels like to come to terms with a terminal illness, how difficult it is to wrap your head around dying before you are 35. I can tell you what it feels like to be written off because there really isn’t anything out there that will really help. But, I can also tell you about hope. Hope saved my life.

In the 7 years since I was diagnosed and 5 years since I was deemed “terminal” so much has happened in lung cancer research. In those days, physicians only really knew about two potential genetic drivers, now we know of 25 and learning of more everyday. In that time, pharmaceutical companies have developed targeted kinase inhibitors (TKIs) that target specific genetic anomalies or fusions such as EGFR, ALK, and ROS1 and testing others like MEK, KRAS and Her2. These compounds are better known as targeted therapies and are far more effective in treating patients with these targets than chemo. In many cases, these treatments are pills that one takes daily, they have milder side effects than chemo and can allow patients to live a fairly normal life. We have come so far in this area that second and even third generation drugs are being developed to address resistance to earlier drug compounds.

Another area that has revolutionized treatment is immunotherapy. Just in the last few years the FDA approved two immunotherapy agents for both non-squamous cell lung cancer and squamous cell lung cancer. These agents boost the use the body’s own immune system to target and kill cancer cells. For the first time in many years there is real hope for patients that have squamous cell lung cancer one of the most aggressive and deadly types of lung cancer.

In addition to new treatment options, and the discovery of numerous genetic drivers of lung cancer, diagnostic techniques and surgical interventions have become better and less invasive for patients. The use of computerized tomography (CT scans) and positron emission tomography (PET scans) allow physicians to see anomalies at earlier stages and allow for more accurate diagnoses. In addition to this, screening of high-risk populations using low dose CTs allows physicians to follow these patients and diagnose them at earlier stages of the disease, increasing survivorship and quality of life. Not only does this save lives, but it also saves money as these patients require less intervention and can be cured when diagnosed at stage 1 or 2, where surgery alone is curative. Video-assisted thoracoscopic surgery or VATS allows patients to undergo surgery, most often a lobectomy (removal of one or more lobes of the lung) with minimal invasion and less risk of complications from surgery, making recovery quicker and easier on the patient and their caregivers.

All these breakthroughs have been achieved despite minimal research funding allocation by governments and private donors. Regardless, patients have a real reason to hope as the dedication of researchers and physicians who are making these discoveries are ushering in a new era in lung cancer research and treatment. One can only imagine the possibilities if there was even small increase in the amount of funding given to this disease group. One can always hope.

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The Need for Lung Cancer Literacy

November 1st marked lung cancer awareness month in Canada and the US. It received little fan-fare and still largely goes un-noticed. After all we don’t have cute logos, fancy ribbons, big marketing campaigns, and many media outlets just don’t pick up the lung cancer story. So what do we have? We have numbers, we have stigma, and we have hope.

screen-shot-2016-11-04-at-8-16-07-pmEvery year 28,4001 Canadians and 221,2002 Americans are diagnosed with lung cancer. Of those diagnosed, 20,8003 in Canada and 157,4994 in the US will have their lives taken from this disease. The truth is that while many other cancers have improved 5-year survival rates, lung cancer still remains one of the lowest at about 17%5.

One of the many reasons for this in my humble opinion is the lack of lung cancer literacy, or for lack of better words awareness. With most diseases, awareness doesn’t always mean action, but for us, awareness and education is key in convincing people to act. Most North Americans think that breast cancer is the largest cancer killer, but in fact, it is lung cancer. Actually, lung cancer takes more lives than breast, colorectal, and prostate cancers combined6.

screen-shot-2016-11-04-at-8-16-44-pmIf one has asked me what type of cancer I thought I may get in my lifetime, seven years ago before lung cancer happened to me, I would have thought it would be breast cancer. After all, I am a woman with breasts and like many, I didn’t think that because I was human and had lungs that I’d be at risk. The reality is, one of the fastest growing segments in lung cancer is the population of young, non/never smokers (17.9%)7. Add to that the population of people who had previously quit smoking (60%)8, and you begin to get a different picture of lung cancer.

The sad truth is that lung cancer is usually diagnosed in late stages (Stage 3 and 4) meaning the disease is already advanced, complicated and difficult to treat. Another reality faced by patients and their caregivers is the stigma associated with the disease. We have known the connection between tobacco products and cancer for decades, the problem is the widespread assumption that it is the only cause of lung cancer, leading to a blame the victim mentality. The truth is, the greatest risk factor for getting lung cancer is having lungs. That of course is followed by tobacco, radon, genetic and many unknown factors.

Lung cancer is not just one disease, it is far more complicated than was once thought. It is categorized as small cell (SCLC) or non-small cell (NSCLC), but can then further be divided by cell type and beyond. In the past decade alone, they have discovered numerous genetic drivers to lung cancer, each requiring a treatment plan that caters to the nature of the cancer.

Despite the abysmal mortality rate and the growing number of newly diagnosed patients, funding for lung cancer research is grossly disproportionate. In the US the National Institute of Health Research (NIH) calculated the dollars allocated per death across many disease areas and found that lung cancer received only $1479 as compared to $2131 for heart disease, $5,804 for colon cancer, $19,250 for breast, and $9,647 for all cancers9. In Canada, only 7% of cancer specific government research funding is allocated to lung cancer but what is worse is less than 1% of private cancer donations goes towards lung cancer research10.

It may sound very doom and gloom, but there are many rays of hope. Through the dedication of researchers, oncologists, nurses, pathologists, patients, and so many more, a number of breakthroughs have been made in diagnostics, less invasive surgical options, revolutionary treatments such as targeted therapies and immunotherapy and are being used in clinics today. The winds of change are blowing and with more awareness and research dollars, real change can be made. You can help by donating to lung cancer research, volunteering at a local organization, being compassionate to patients, or by sharing this article.

References:

1. Canadian Cancer Society – 2016 Canadian Cancer Statistics. Available at: http://www.cancer.ca/~/media/cancer. ca/CW/cancer information/cancer 101/Canadian cancer statistics/Canadian-Cancer-Statistics-2016-EN.pdf?la=en. Last accessed on October 19, 2016.

2. American Cancer Society. Cancer Facts & Figures 2015. Atlanta: American Cancer Society; 2015. pp.4.

3. Canadian Cancer Society – 2016 Canadian Cancer Statistics. Available at: http://www.cancer.ca/~/media/cancer. ca/CW/cancer information/cancer 101/Canadian cancer statistics/Canadian-Cancer-Statistics-2016-EN.pdf?la=en. Last accessed on October 19, 2016.

4. Centers for Disease Control and Detection: Deaths: National Vital Statistics Report, Final Data for 2012. NVSR Volume 63, Number 9. 85 pp. (PHS) 2014 – 1120, http://www.cdc.gov/nchs/data/nvsr63/nvsr63_09.pdf

5. Lung Cancer Canada. 2015 Faces of Lung Cancer Report, Toronto: Lung Cancer Canada, 2015. pp6.

6. Lung Cancer Canada. 2015Faces of Lung Cancer Report, Toronto: Lung Cancer Canada, 2015. pp6.

7. Centers for Disease and Prevention. Morbidity and Mortality Weekly Report, “Cigarette Smoking Among Adults- United States. 2006,” November 9, 2007/56(44): 1157-1161, Table 2.

8. Centers for Disease and Prevention. Morbidity and Mortality Weekly Report, “Cigarette Smoking Among Adults- United States. 2006,” November 9, 2007/56(44): 1157-1161, Table 2.

9. Funding Source: http://report.nih.gov/categorical_spending.aspx Source of Actual Deaths: Centers for Disease Control and Detection: Deaths: National Vital Statistics Reports, Final Data for 2012. NVSR Volume 63, Number 9. 85pp. (PHS) 2014 – 1120 http://www.cdc.gov/nchs/data/nvsr/nvsr63/nvsr63-09.pdf

10. Canadian Cancer Research Alliance 2007, CRA 2009, Canadian Cancer Society 2010.

The New Face of Lung Cancer

Receiving a cancer diagnosis is devastating and life altering, but as a young adult with lung cancer the challenge was even more daunting. Like most people I was oblivious that I could get lung cancer, after all as a young woman I thought I was more likely to get breast cancer because I had breasts. I never fathomed that because I had lungs I could get lung cancer2013-08-14-20-48-46. I know differently now.

Even after beating the odds of living 5 years beyond diagnosis, the first question I’m asked when people find out I am living with lung cancer is “did you smoke?” The idea that smoking causes lung cancer is so entrenched in our psyche that most people have no idea that up to 60%1 of lung cancer patients have either never smoked a day in their lives, or quit decades prior to their diagnosis resulting in an unfair stigma being placed on patients and their families.* The notion that someone deserves their disease is a ridiculous concept to me, but a 2010 national poll showed more than one in five Canadians said they feel less sympathy for people with lung cancer than those with other cancers because of its link to smoking2.

I started down this road in 2009 when a small bump on my collarbone sent me to my doctor. Despite being unconcerned he sent me for an x-ray. That simple action would lead to the cascade of tests that would ultimately lead to the diagnosis of locally advanced adenocarcinoma of the lung. I am lucky! Things could have gone differently, I could have been inoperable, I could have been sent home, I could have been ignored, I have many friends who were, they didn’t get diagnosed until they were very sick, and sometimes even too late.

Once I peiced the tatters of my life back together, recurrence hit. I was devastated once again. My worst fears had come to pass. Beating Lung Cancer once was hard, I knew beating it twice would be damn near impossible, after all, at 17%, the five-year survival rate for lung cancer remains one of the lowest of all the major cancers3.

Finding out that I was a mutant was a relief…I know what you are thinking?? What! I’m sure most people would opt for a super power, but knowing I had an ALK-EML4 fusion meant I had options, so for me it was just as good. Prior to this revelation, I had few to no options left as a 32 year old stage 4 recurrent lung cancer patient. I was literally waiting to get sick so I could get treated and hope it wasn’t too late knowing full well I’d likely become one of the 85% of lung cancer patients. Dead.

I found information about a targeted therapy in clinical trial in a blog, much like this one. At the time I didn’t know anything about trials, targeted therapies, or driver mutations but I immediately jumped on this and looked for any way I could get in to the trial. Luckily there was a trial close to my home. In Sept. 2011 I was admitted and randomized to the drug group and began taking an ALK inhibitor. From that time until July of this year I had been NED (No Evidence of Disease, the best letters of the alphabet) and being unrmarkable was fantastic, but things change. I have always known that change would come, cancer is cunning and insidious.

Fear not dear reader, I am in a new trial for a third generarion targeted therapy. Targeted therapies mean I can live a fairly normal life. I don’t have to worry about neutropenia and infection, or other damaging side effects. I am able to live and travel. I am able to advocate and volunteer. I am able to plan a wedding, buy a house and plan on a long life ahead. It isn’t a cure, I will likely never be cured, but I gladly put my faith in research, after all it has given me five years and counting.

What’s disturbing is that every year, 26,100 Canadians will be diagnosed with lung cancer, 20,800 of those diagnosed will die4. It takes the lives of more Canadians than breast (5,000 lives), prostate (4,000 lives) and colorectal cancers (9,300 lives) combined5. Yet it is one of the most underfunded.

It is exciting times in lung cancer research and diagnosis. Less invasive procedures, genetic testing, screening procedures, and many new targeted therapies are being developed and improved upon and patients are benefitting in so many ways. From prolonged life and higher quality of life to the freedom of taking their treatment at home and living life unremarkable or not to the fullest. You may think, great! They don’t need funding or support, but in actuality, the disease receives only 7 per cent of cancer-specific government research funding and less than one per cent of private cancer donations6. I can only imagine what they could do with 3%.

Living with a chronic disease, isn’t about how many days we have to live, it’s the ability to live life in the days we have. When it is my time to leave this earth, I will do so having no regrets. I will know that I did not let my diagnosis define me but allowed me to be the person I was meant to be.

AM

*Current smokers had smoked 100 or more cigarettes and currently smoked. Current non-daily smokers were current smokers who smoked only on some days. Former smokers had smoked 100 or more cigarettes and no longer smoked at all7.

  1. Lung Cancer Canada, Lung Cancer Accessed at: http://www.lungcancercanada.ca/Lung-Cancer.aspx
  2. Ipsos MORI, Perceptions of Lung Cancer in Canada, An Ipsos MORI report for the Global Lung Cancer Coalition, April 2010. Accessed at: http://www.lungcancercanada.ca/ resources/site1/general/PDF/CanadaReport.pdf
  3. Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 64
  4. Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 50
  5. Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 50
  6. Canadian Cancer Research Alliance 2007, CRA 2009, Canadian Cancer Society 2010.
  7. Husten, C. G. (2009) How should we define light or intermittent smoking? Does it matter? Nicotine Tobacco Research 11(2), 111-121.

 

 

 

Its #LCAM

Please excuse the late post! I was truly hoping to have this post up earlier, much earlier infact, but today was one of those crazy days where life goes topsy turvy. Now before I get to that, I wanted to share a few Halloween pictures since this was our first in our new home. After prepaing for a barrage of kiddos, we ended up only getting about 20, so leftovers abound as evidenced by some of the pictures.

Okay now back to the crazy day! It was November 1st yesterday marking the beginning of Lung Cancer Awareness Month. Usually I am busy attending or participating in Lung Cancer Canada’s press conference where they present our Faces of Lung Cancer Report that details the current status of lung cancer in Canada, however this year it was held in our Nation’s Capitol, Ottawa. I made the choice to stay home in Toronto as I had a project of my own that I wanted to launch. Since I hadn’t gotten a good sleep the night before (hello 7am sleepy time) I was just getting up, when I got a call to see if I was available to do an interview. Of course I said yes! Anything to help raise awareness!!

So up I got and scrambled to get my self and the house ready incase they came here. Needless to say, I just had enough time to shower and meet with the interviewer. The topic of the interview was the rising incedence of lung cancer in women and lung cancer as a women’s health issue. Now far be it from me to tell the media that they missed the ball on that one (It was one of the main topics of the first Faces of Lung Cancer Report), but I answered as best as I could. It went well and I went home and set the PVR. Here is the link. If I had a wee bit more time, I know I could have avoided all the ums and ahs.

When all was said and done, I got to work on my #LCAM project. Some may or may not have noticed a new menu button on my home page, but one has been added and it links to my new storefront (Hope Happens). If you click it, you will find handmade jewelry made by yours truly. It is symbolic of the hope I have for myself and for others who have been diagnosed. All the jewelry features pearls as pearl is the colour for lung cancer. It is my hope that I can raise $21,000 by next year at this time for the almost 21000 Canadians who will die from this disease in 2016. So please take a look and help me to support research and programs for patients and their families.

AM

 

 

 

 

 

 

 

 

 

 

Time flies…when you can’t remember

On October 13th, CBC Aired an interview Peter Mansbridge did with Gord Downie, I watched with anticipation, curious to see what he had to say after The Hip’s national broadcast on Aug 20th. I hoped it would reveal that he was in some miracle treatment, that things were going well and that he was the Gord we saw on stage. He was in some respects, he discribed with great passion his legacy project: The Chanie Wenjack Fund and his upcoming new album Secret Path, both fulfilling a promise he made to our First People’s. It is his hope that this Fund will help support reconciliation between Canada’s Indigenous and non-Indigenous peoples.

What was heart breaking was his admission that his memory, once great and vast has diminished. He had to write words on his hands to remind himself of things. For his epic perfomance that our nation watched, he needed 6 prompters to help him remember the word to the songs. Songs he once wrote.

http://www.cbc.ca/news/thenational/gord-downie-exclusive-interview-1.3804422

I know how it feels to forget. I do it too.

Since starting Lorlatinib, I have seen a sharp decline in my day to day memory. Despite what my cognitive tests show or test for. I have experienced Brain fog before, but never like this. It was like someone had hijacked my brain. I felt like I was losing my mind.

In the beginning I just didn’t know what to do. I couldn’t remember if I had fed the dogs, or where I left my shopping cart, whether I had spoken to someone or not, or what I was saying in conversation. It was traumatizing!

My solution was to just write it all down. So I literally had lists, lists everywhere. I have adapted over the last few months and am coping better. Now I’m using what Pintrest calls a Bullit Journal. I love it. Its like an agenda where you can journal if you want, but most entries are very succinct like a list. So now I can keep all my appointments, chores and important things to do straight, no excuses, no forgetting!

I still won’t be able to tell you what I did yesterday or last week, unless I look, but looking made me realise that I was busy in the last little while and although I feel like my days all meld into one, I’ve done a lot and time really has flown by.

AM

 

These are my Scars

I was born naked 
Perfect skin
Ten fingers ten toes
One mouth one nose
To breathe life into my lungs
I cry out

I grow 
I learn
I stumble 
I earn
I fall
I stand tall

Then you came
Death and destruction 
Fear and shame
Monster of many names
I cry out

Needles needles needles
Poison 
Cut open
Born naked 
Imperfect
I cry out 

Your footsteps follow
Darkness and doubt
Sadness and anger
Fear of your shadow upon me

I crawl 
I grope 
I struggle 
I fall 
I cry out
I stand tall

Born naked
These are my scars
I wear them proudly
I stand tall
I cry out

Happy National Poetry Day

AM

Acting on Awareness

img_4492
Fall is coming

There’s a crispness to the air that signals Summer’s end. Days are getting shorter and the season of awareness is upon us.

I’m tired of awareness. I mean great, we are aware. So what! I’ve learned that being aware of something doesn’t mean one will act. Now there’s where change happens whether it’s research, funding for research, support locally/provincially or federally for programs, better diagnostics, less invasive procedures, whatever, change takes action!

I think it’s safe to say we are all aware cancer exists, and depending on what day or week or month it is which one or ones we are supposed to be aware of or we’d be living under a rock. But what of it? Are we actually doing something about it? Do we call a local cancer center to volunteer? Do we check on our neighbour who’s I’ll? Do we sacrifice our precious time for a cause that has touched us? Or are we simply aware that something exists?!
Action doesn’t require a lot. We can do in small ways. After all, the only way to eat a cake (mmm cake) is one bite at a time. So why is it that acting is so hard?

Often I think people shy away from action because they think it will take too much time. Or they thing that the problem is too big and that one small act of kindness won’t really make a difference. They are wrong.

How long does it take to say hello? How long does it take cook a meal? How long does it take to check in on a friend?

Oh look you have acted.
Change happens with small acts. Before you know it drops in a bucket turn into floods of action.

Ways you can act*

  • Yard work/house work for friends/neighbors
  • Driving friends/family/neighbors to appointments/to get groceries/whatever
  • Babysitting/ driving kids to school/sports/daycare
  • Volunteering
  • Lobbying for change
  • Donation money/goods/time
  • Being supportive by listening and being a friend

*These don’t have to be cancer related either.

So in this season of awareness, act!

If you really can’t act and want to use your wallet (also good) try to support causes/organizations who use a majority of their funds to actually do what they say. So many big organizations (I won’t mention names) have a great warm and fuzzy cause and are very visible but use a lot of their funds to cover their over head costs which means those they are there to serve don’t see a lot of those donations. Sometimes small causes/organizations can and will do more. Sure you have to look for them but if you really want to make a change sometimes small and grassroots is where to go. You can if you are savvy see where the money goes.

AM

Its not always sunshine and roses

IMG_4004Life is hard enough under normal circumstances, but you get thrown into the lion’s den when you are diagnosed with cancer. Its something that changes you forever, whether you want it to or not. The diagnosis and the fallout usurp every fiber of who you are before cancer. If you are lucky, you get cured, but you can’t forget. Some of us are able to shake it off or move on and become survivors. I am not one of them.

I am not a survivor. I am clawing and groping my way through this. I am a liver. Everyday I live. Living is hard. Some days when I am lucky, I live very well. I wake up and I am refreshed and ready to take on the day. I don’t resent taking the pills that keep me alive and I happily gulp them down and start my day. I don’t hate my achy bones and I don’t frown at the image I see in the mirror, because it’s full of life and joy. I go out and take on the world like I own it, then come home and fall into bed feeling fully satisfied, and not once throughout the day do I feel like I have cancer. I sleep soundly. Those days are rare. Like a purple unicorn with a four-leafed clover rare.

Most of my days are quite different, I often wake up tired and achy. I’m sluggish and struggle to get through the day, despite the list of things to do. Cancer is almost always on my mind. With every ache, cough and bout of fatigue, I am reminded. Yet I claw and crawl and live.

Living with cancer is exhausting, you never get a break. There are no days off. It is an ongoing slog up hill, sometimes you get a reprieve and there’s a rock you can sit on, but you can’t sit long, because rocks are uncomfortable and you know you need to keep going.
Often that is exactly how it is. One foot in front of the other, wash-rinse-repeat. It is the only way to get through the day.

I have been living with cancer for over seven years and its great that I am alive to speak about it, but it isn’t without cost. It warps you. Your sense of self and how you relate to others is forever tainted by the experience of having and living with cancer. Living with cancer makes you myopic to the detriment of relationships and to our own selves.

It is a never-ending carousel of ups and downs and it is exhausting not being able to stop the ride. Maybe I sound pessimistic because I am in a funk, or maybe because I am waiting for results of the first CT on a new trial, or maybe its because I’ve had progression and I’m terrified that if this new trial doesn’t work I’m out of options, or maybe I’m tired, or maybe I’m just being real?!

Often times though I think there is an assumption that if you aren’t “sick” and “dying” you must just be fine and dandy. The thing is, we are “sick” and we are “dying”, just not yet. Most people just don’t or can’t understand this crazy life we live, how could they? We live in Bizarro Land! They don’t understand why we can’t commit to a vacation date six months down the road. We live scan-to-scan, doctor’s appointment to doctor’s appointment and we have been doing it since diagnosis. They don’t understand our dark humour. We joke about dying. If you can’t laugh about it, all you’d do is cry, I’d rather laugh. They think we are morbid; we talk about the songs they’d play at our funeral. I want a party, a full on party! I wasn’t a sad sop in life; I refuse to be one in death! The list goes on, and this is our life minus doctor’s appointments.

It can’t all be sunshine and roses, and I try to remember that struggling makes you a stronger person, that adversity makes you thankful for what you have. I have life. It isn’t an ideal life, but it is my life. It is a life that I am grateful for, that I will claw for, that I live for, as long as I can. I’m a Liver. I’m a Lifer.

** This peice was originally published on CKN (Cancer Knowledge Network) Aug 3rd 2016.