Stability ain’t what its cracked up to be!

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.

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.

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Blargh!!

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.

 

AM

 

Magic Happens

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.

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.

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.

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.

img_4746It 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!

AM

 

 

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.

 

 

 

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

 

And sometimes life gets in the way…

Now I remember why I had a hard time blogging before. Life just gets in the way! I suppose that is a good thing, it means I’m busy doing and being. So let me update you on some of the doings.

There hasn’t been much change in life lately, it has actually been remarkably calm, which is a reprieve from the last six months, which were a whirlwind! Let me explain.

In February my husband (Patrick) and I took ownership of our very own house. Something I thought could and would never happen to me after getting sick, but there I was with keys in hand to my own little slice of heaven!

 

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Our slice of heaven

Almost immediately afterwards I began the search for a reliable and reasonable contractor to do the work we wanted to our home. Those who know me, know I’m a Type A, so I wanted everything done on a very detailed schedule and so far that wasn’t going my way. No shows, delayed appointments and “I’m too busy, maybe I can do it in August”, was how things were going.

Around the same time, a dear friend and fellow lung cancer survivor was going into her 3rd surgery and asked me to take care of her beloved doggies, how could I resist! All the while my own disease status was changing. For a few months, some very small spots began making an appearance on my CT results, and for those few months, we waited, watched and discussed what treatment might come next. We were going to be patient and cautious (very unlike me).

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As time ticked on we found a contractor and our renos got going and we started packing. Then unexpectedly on April 9th we brought home Finn our 2nd rescue dog. I have always been a softy for animals and when we heard about him a few days prior we knew he had to be part of our family. Of course we had talked about getting another dog once we had settled into the house, maybe in the fall or next year, but there we were and couldn’t be happier.

After spending an extra month in our apartment we finally were able to move, which was an ordeal in and unto itself!! I won’t go into detail but it gave me nosebleeds and spontaneous bouts of hysterical weeping. Thanks to my family, friends, and moving angels for getting us into our house.

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In mid May I met with Dr. R. my oncologist we looked at my latest scans, and it was decided that it was time to move. While I was busy moving he was busy doctoring and looked into a number of 2nd generation ALK inhibitors, some that have Health Canada approval but are not yet funded, and others that are in trial. There was a 3rd generation inhibitor too, that was the one we were looking at. Of course, that meant leaving the comfort of Lakeridge and going to swim with the big fishes at Princess Margaret. It meant I’d be entering into another trial. It also meant I would be leaving my care team of 5yrs.

The trial we wanted would be opening in June, and I would be patient #1. We scheduled all my preliminary scans and biopsy after my trip to ASCO (I know I still haven’t posted part 2) where I would actually learn about the drug I’d be taking. After getting back I was subjected to a barrage of appointments. CT, MRI, biopsy, ECG…but I started the drug.

It has been an interesting change. With the previous TKI (Tyrosine Kinase Inhibitor- AKA protein inhibitor) Crizotinib I had to eat a full on meal before taking it and couldn’t lie down for an hour or I’d be riding the porcelain bus. With Lorlatinib, I take it on an empty stomach once a day. Another major difference is I can now enter a bright room and not have an acid trip. My edema didn’t get better, I actually think its worse and I’ve noticed I seem to be more forgetful, but that could be due to the insomnia. Regardless of the challenges, I’m glad to be on the trial.

My first set of scans were completed last week and I am (not) patiently waiting to see the results. Anecdotally, it seems to be working, the persistent cough I had is mostly gone and the x-ray that was done 3wks ago showed or rather didn’t show a spot they had seen on my baseline. So I am hopeful and optimistic, but I am dying to see the real evidence. So I guess until then, I’ll have to keep calm and keep myself busy being and doing.

Until next time.

 

 

 

Update to the last Update ; P

UPDATE: I have taken my second dose and so far so good, breathing is better and my cough seems to be less intense. It could be placebo; it could be meds. I actually noticed a slight improvement yesterday too. Walking to the hospital from the car< I was very winded after going from the hospital to the car, I noticed I was ok. Today I can actually take a deep breath and not hack my head off!! WOO HOO HOPE!!

Personal Update #2

As I write this, I sit in a room at Princess Margaret Hospital waiting for my first dose of a new-targeted therapy. The one I had been on, the one that gave me almost five years, the one I had grown used to, stopped working well and now it is time to move on. Quite literally now. The thing is, I almost didn’t make it to my appointment today, a day I have been waiting weeks for, the day I have been scanned, biopsied, MRIed and ported for and it all almost didn’t happen. That’s because last night was a bad night.

It got so bad and scary for me that I almost called an ambulance. Almost. You see I have had this pesky cough for a few months now. I first thought it was due to seasonal allergies because mine have been raging all year. I tried dealing with it myself but since it didn’t get any better, my medical team is monitoring it and we have tried numerous things to try to get rid of it. It seemed to have worked until I came home from Chicago with a head cold and then it reared its ugly head again. This time worse, this time I strained my entire back coughing, this time so bad it made me projectile vomit, which made it scary.

I haven’t been scared in a long time, the last time was when I recurred and thought I was doing to die, but since then I’ve been ok. Last night being the exception. Last night I realized that this cough wasn’t what I thought it was, an innocent cough related to my allergies, or a head cold, but related to my cancer progression. It shook me. As I sat on my bathroom floor hacking gasping for air while I threw up all I could think of through the stabbing pain in my chest, ribs, and back was I’m going to asphyxiate on my own vomit and die…and this is how Patrick will find me.

When the vomiting stopped, I had a vasovagal reaction (a little thing that I equate to the feeling of having a mild stroke – you get weak, sweaty, feel like you are going to puke and shit all at the same time #Funtimes) that just ratcheted up my anxiety so I thought I should call an ambulance…but of course I didn’t, I calmed down and tried to go to sleep because damn it I’m getting my new drug tomorrow!! Sleep didn’t come easy though, I struggled with getting comfortable because my back was killing me and then I kept having thought fits. I must have managed a few winks because as the sun rose, Patrick jumped out of bed to wake me up; we slept through the alarm, Great!!

Bleary eyed I got into the car and down here an hour late, and another two hours waiting for blood, but finally I am here. I told the physician during our examination and again after mentioning the cough and the events of last night, he added fuel to what I feared most, that this cough is due to the progression. Nothing certain of course, but nothing to rule it out either. My body was betraying me again!! After all these years of learning to trust myself, learning to control my fears and take control of my anxiety all disappeared in one betrayal. Never in this whole time have I had a symptom of cancer, not in seven years! Now after all these years betrayed. How do I re-learn everything? The seed of doubt has been planted…what if this doesn’t work? What if this bloody cough doesn’t go away? Where do I start again?