patient – These Are My Scars

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

December 17, 2016December 17, 2016 These are My ScarsLeave a comment

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.

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.

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-am done 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.

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

Stability ain’t what its cracked up to be!

December 13, 2016December 13, 2016 These are My ScarsLeave a comment

This is my favorite time of year. I don’t know what it is about the weeks leading up to the holidays, but I just love them. My heart is warmed by twinkling lights adorning all the neighborhood houses and people seem just a little bit more cheerful. Just the other day it snowed, not just a dusting either, a real good snow. It was magnificent. Looking out our windows Sunday night and seeing a fluffy white blanket covering everything made me giddy. Everything seemed magical and pristine.

Winter Wonderland

Guess we have to shovel out the car

Perfect Finn Prints

Doorway to Narnia

Most wonderful time of the year

That day I spent the day in my jammies watching movies with the pups and a good cup of tea, it was heaven! A stark contrast to the hustle and bustle of the week before. It was a scan/check-in week preceded by a very long scare & scan day the previous Friday. Needless to say I had an x-ray, two chest CTs (one abdominal and pelvic), an MRI, an ECG an ECHO as well as blood work (thank you port) all in the span of 5 days and my body was feeling a little worse for wear. Thankfully, the scare turned out to be a chest infection and nothing more. Amidst all that my scans still say stable.

I am learning to live with stable, even though I don’t like it, even though I’d feel so much more secure if I was NED. NED allowed me imagine no cancer in my body, whether it was true or not, I don’t know. Its hard and sometimes torturous knowing that inside you there is a ticking time bomb or in my case many little time bombs just waiting to grow and spread (and kill you). The uncertainty makes it easy to go down the rabbit hole so much so that the thoughts permeate into everything, even my seasonal happiness.

While trimming the tree, I caught myself thinking… Wow! This is our first Christmas in this house, how truly amazing. I wonder if it will be my last? I wonder how many more Christmases I’ll get? I wonder if Patrick will decorate like this after I’m gone?

You see how easy it can be to get sucked in.

I don’t know if it is because I live my life in three week increments or six week milestones, but looking at a full year is truly daunting and scary. I felt the same way planning my wedding. It felt like a mixture of joy and sheer terror! Life can change so quickly. I have seen it happen too many times.

And then I remember to breathe.

Despite all these crazy emotions and being sick (my lungs sound like bagpipes warming up), my soul is happy. I find myself sitting on my couch sometimes, and I look around, and I am awed and I am grateful for all the blessings I have in my life. My husband, my family, my friends, my dogs, my home, and my health. My life is so rich! That is what I need to hold on to. That is the light that guides me out of the rabbit hole.

Magic Happens

November 21, 2016 These are My ScarsLeave a comment

Something magic happens when you gather lung cancer patients together!

On the evening of Thursday November 17th Lung Cancer Canada hosted their annual Evening of Hope Gala. What was different this year was that our Gala would kick off our first Hope is Here Patient Summit.

Views from the 6 or 24th floor.

City Hall

Dr. Wheatly-Price

Me and the lovely Deb Maskins

Dr. R Juergens, Casey Cosgrove, and Dr. N Leighl

Our hosts with the most!

We welcomed Canadians from all over the country to the first ever lung cancer patient summit for a one-day conference held at the Sheraton Centre in downtown Toronto. The Summit featured educational break-out sessions, inspirational speakers (including myself and other patients), and the opportunity to connect with people from all over Canada who have had a lung cancer diagnosis.

The day was opened by our President Dr. Wheatley-Price. I followed him in welcoming our guests by sharing a bit about my story and all the breakthroughs in treatments and diagnostics that have been approved and are in practice since I was diagnosed in 2009. Our morning program began with New Advances in Lung Cancer and covered a number of topics: Screening and Surgery; Radiation Therapy; Immunotherapy and Targeted Therapies; Future Direction of Lung Cancer; and a question session moderated by Dr. Wheatley-Price.

Images like this always blow me away!

Clinical trials save lives!

Faces of lung cancer

Adenocarcinoma drivers

Dr. Gail Darling gave us a comprehensive overview of the roll-out for Ontario’s Early Screening Lung Cancer Program for high risk populations. This is fantastic news because all the research surrounding early detection programs is very positive. The NIH’s National Lung Screening Trial (NLST) 2011, showed a 20% decrease in mortality in the screened group. That may not seem like much, but consider that for the same number of breast cancer patients screened there is only a 3 to 4% decrease in mortality. They showed that the number of lung cancer patients needed to screen to save one life is 320. For colon cancer the number is 600 and for breast it is 1000, proving early screening for this targeted population is truly effective and does indeed save lives.

Radiologist Dr. David Palma provided a very passionate presentation about radiation in populations that may have previously been denyed an opportunity to have radiation as a viable option after metastasis. He also championed the idea that in order for patients to be partners in their care and recieve the best care, they need to know how to advocate for themselves, decipher reports and how to compare their care against published guidelines.

Dr. Rosalyn Juergens gave us the low-down on Immunotherapy and Targeted Therapies. A very informative session illustrating complexity of lung cancer and the variety of new therapies designed to treat them. She discussed the numerous targeted therapies available for both EGFR and ALK, but now also for ROS1 and other driver mutations. Immunotherapy is another area where a number of agents are being tested and approved for use in patients with great success and lasting effects. Finally, there is hope for lung cancer patients.

With our brains and notepads full, it was time for a break and a bit of socializing. Following the break, we continued with the McAlpine’s who shared their story with us. The crowd was brought to tears as Ian and his wife Cathy shared the ups and downs of accessing treatment. To my amazement, I realised that I had seen them many times and that we had shared a doctor. Their tenacity brought them from British Columbia to Ontario to get care, and I am so happy that the journey has been successful.

My former oncologist Dr. Jeffrey Rothenstein gave his presentation about participating in and accessing clinical trials. According to his presentation, only 3 out o f 100 patients take part in clinical trials and even fewer lung cancer patients participate. What is mindboggling is that 85% of patients aren’t aware that clinical trials are viable treatment options. I can attest that clinical trials save lives! I literally wouldn’t be alive today if it weren’t for that option.

My current oncologist Dr. Natasha Leighl presented her perspective on treatment access and cost. What was great about this presentation was that it wasn’t just literal cost of medications that was discussed, but the toll on the family, inequality of access, and a number of other factors that affect patients after a diagnosis of lung cancer. I had no idea that Canada was second behind the U.S. in out of pocket drug costs, and that 91% of cancer patients will suffer from financial toxicity. She also highlighted the fact that Canada is much slower than other countries when it comes to drug approval and funding. This was a focus of Lung Cancer Canada this year in their 2016 edition of Faces of Lung Cancer.

Before we dispersed for lunch, my friend and our Vice President Casey Cosgrove discussed advocacy and community involvement. Illustrating both the need for volunteers and advocates and ways to help. I loved his point that not everyone is good at or wants to do everything, but if we do what we’re are comfortable with, we can help in our own way.

During our lunch break, our keynote speaker Darrell Fox spoke to us about his older brother Terry, and the legacies Terry Fox left behind. The Terry Fox Foundation which has raised over 700 million dollars since Terry’s death in 1981 and the Terry Fox Research Institute. The TFRI is funding the Pan-Canadian Early Lung Cancer Detection Study. Darrell also shared his father Roland’s story. Rollie as he was known passed away this year from lung cancer making the Fox family a part of our community. It was a truly emotional speech and not many of us had a dry eye.

Terry Fox’s Legacy

Mr. Darrell Fox

The remainder of the day consisted of breakout sessions that included sessions in nutrition, breathing and exercise, financial planning and palliative care. Each session was very informative. The nutrition session provided ideas and tips to quick healthy meals that cater to health and healing. The exercise and breathing session demonstrated activities that one could do at home and that could be adapted to differing abilities. The session was sponsored by Wellspring who hosts a 20 week exercise program for patients. The financial planning session provided tips to help plan while ill, or to prepare incase of death. Finally, the session on palliative care discussed the variety of options and that palliative care isn’t just about dying.

After regrouping it was time to close the day with a photo and good-byes.

It is impossible to describe the feeling when you meet someone else like you.Therefore unimaginable when you meet 60. All I can say is my heart was full and I am so privileged to be a part of such a wonderful event. This was Lung Cancer Canada’s first Hope Is Here Patient Summits, I know it won’t be the last. I thank everyone in the office and all the volunteers and sponsors for everything you did!

A Breath of Fresh Air

November 12, 2016 These are My Scars1 Comment

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.

screen-shot-2016-11-12-at-4-48-37-pm

Time flies…when you can’t remember

October 17, 2016 These are My ScarsLeave a comment

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.