Stage 4 – These Are My Scars

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 cancer 2013-08-14-20-48-46 . 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.

*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.

Lung Cancer Canada, Lung Cancer Accessed at: http://www.lungcancercanada.ca/Lung-Cancer.aspx
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
Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 64
Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 50
Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 50
Canadian Cancer Research Alliance 2007, CRA 2009, Canadian Cancer Society 2010.
Husten, C. G. (2009) How should we define light or intermittent smoking? Does it matter? Nicotine Tobacco Research 11(2), 111-121.

I’m not a gambling woman. In fact, I’ve never even been to a casino, but when it came to my cancer diagnosis I needed to know what my chances of survival were. When my GP gave me the news on April 15th, 2009 that I had Adenocarcinoma of the lung, he made no mention of odds. In fact, when I asked him whether I was going to die, he answered honestly and said he really didn’t know. I don’t know why but that response gave me the motivation to cast off the mantle of sick person and put on the cloak of cancer kick-assery. I would be the master of my destiny. After all, nothing is for sure. Isn’t life supposed to be an adventure?! I mean, what are the odds that a healthy 30-year-old non-smoking woman gets diagnosed with lung cancer? It must be fairly rare because from that moment, CTs, bone scans and surgical referrals were all expedited. Within a month, I had been referred to a surgeon and had an appointment to kill Tom. Who’s Tom you ask? Good question.

I decided I needed to name my enemy, and Tom was the name that popped into my head, so Tom the Tumor it was. Every night before going to bed I’d converse with Tom. Well, actually, I’d in no uncertain terms tell Tom he was going to die, that he may as well give up because he was going to lose!! On May 15th I walked in to the surgical suite with the hopes that I’d wake up one lobe less and Tom-free. Unfortunately, that was not the case: Tom had friends that lived in my lymph nodes. I went from stage one to stage three in an hour, and my chances of survival went from between 75 – 55% to between 35 – 10%, not the outcome I had been looking for. So now what?

My best chances lay in an aggressive plan of concurrent chemotherapy and radiation followed by a lobectomy, then further chemotherapy. This plan came to fruition on June 15th, literally two months after my diagnosis. I was scheduled for 30 rounds of radiation to my chest and lymph nodes, with two cycles of daily chemotherapy, which consisted of Cisplatin and Etopiside. All things considered, I tolerated chemo very well. The anti-emetic drugs they gave me controlled my nausea, and for the most part, I did what I normally did (when I wasn’t at the hospital). The worst of my side effects were fatigue, hair loss (sporting the Benedictine monk look), and acid reflux. By mid-July, I was finished this phase of treatment, but now I waited for September when they would finally remove Tom and his friends. Until then I continued my daily ritual of rallying my troops. I know you’re wondering: “She has troops?!?”

My troops were all my non-cancerous cells: my blood cells, my immune system, and everything in between. So each night I’d talk to them, rally them, let them know that even though they were taking a hit from the chemo, they still outnumbered the cancer and it was their job to get in there and get them! This continued during surgery, with the exception that their job was to heal as well as maim any leftover cancer. Surgery consisted of a right mid-lobectomy and wedge resection. I was in hospital for nine days, and things looked good. My recovery was quick, and I was able to get back to “normal” within a few weeks.

In November of 2009, I started post-surgical chemo. It wasn’t as frequent, but it was a much higher dose than before. I don’t know why with this round I developed serious issues with anxiety, but I think it was because now I had an end date, something I hadn’t had before. With each visit and procedure I became more and more anxious. This round also required the insertion of a PICC line, something fairly innocuous but it rendered me catatonic. Ativan and meditation were a godsend!

Chemo consisted of high dose Cisplatin and Vinoralbene. The side effects hit me almost immediately and were much harsher this time around. The nausea was manageable, but I became neutropenic, delaying treatment a number of times. I also began to suffer symptoms of neuro-toxicity (tingling and numbness in my hands and feet) and ototoxicity (ringing in my ears), neither of which shook my resolve to continue with this course of action.

This time around though, treatment was torture. I knew I had to do it, but it seemed never ending. My PICC was my enemy; I absolutely hated it. All I wanted to do was take a normal shower, one in which I didn’t have to wrap my arm up in plastic and avoid getting it wet. A shower that allowed me to be ambidextrous and wash both sides of my body with ease. Simple pleasures!! My last torture – I mean treatment – was December 24th 2009: Merry Christmas, indeed. I was overjoyed when they took that PICC line out of my arm!

New Year 2010 was strange. I didn’t quite know what to do with myself. Treatment was done, now what?! Naively I had convinced myself that I’d go back to work, jump right back into life, pick up the pieces and carry on, but what happened was I began to feel the gravity of what had happened to me. Now that I had time to think, I realized that I didn’t want to go back to my old life, that I had been inexplicably changed for the better. I had been given a second chance, an opportunity to re-evaluate my life and make it what I wanted, but how? What did I want?

The months that followed were quiet and filled with ups and downs. I had follow up CTs every three months that almost always caused me great anxiety, but so far each scan showed no indication of cancer. That summer I went to Italy for a month and the UK for three weeks: it was heavenly! To deal with the emotional toll this had on my life I began seeing a psychologist. I figured life is too short to be depressed!! I eventually pieced my life back together. I felt strong enough to go back to work part-time, so in January I made my return to the classroom. It was a joy and a shock to the system: I quickly found myself struggling and stressing that maybe I jumped the gun. But after a few weeks, I got back into the groove. My scans still brought me anxiety though, and the further along I got, the more I stressed.

My oncologist once said that usually if cancer was going to come back, it would do so within the first two years. After that, it would take five years of clean scans to deem me cancer-free. I had surpassed a year, so I felt like I had crossed a major hurdle, but in my head there was always a nagging little voice. You see, my surgical pathology report indicated that the margin where they dissected and removed the parts of my lung were positive. What did that mean?! My understanding was that when they tested those cells, they showed the presence of cancer. The post-operative chemo should have taken care of these stragglers, but did they?! In February 2011 my scans began to be worrisome for me, because they kept noting nodules in my lungs. At this point, they couldn’t confirm that it was a recurrence, and I had to be satisfied with not knowing. Living with this uncertainty was torturous! I just wanted to know one way or another!

In May I got confirmation that my cancer was back. This time around, though, it was present in both sides of my lungs and in multiple lobes. The odds were not in my favor! So much so that they don’t even post these odds on the Internet. My Oncologist was less than encouraging, too. Despite my will to kick some cancer ass, I was finding that medically there wasn’t much to do other than wait and get sicker before anyone was willing to try to make me better. Surgery wasn’t an option, and radiation wasn’t an option. My cancer was so small, and I was asymptomatic, so chemo wasn’t a good plan either, because it would make me sicker and it didn’t offer me a cure anyway. No matter what I did the cancer would come back. In not so many words, and without actually saying it, cancer would kill me.

I was mad! That’s actually an understatement! I lost all faith in the medical system that months ago saved my life…what the hell happened? I wrestled with accepting this “wait and see” approach, and one day out of the blue I read an article posted on I2y’s Facebook page. It was about a new targeted drug for lung cancer patients that was proving miraculous results in those who were part of the clinical trial. I immediately phoned my nurse and asked her about the trial. She hadn’t heard of it but would tell my oncologist. Within a week, I had been referred to a new oncologist who was part of the trial. I had found hope again.

Part of being included in the trial was having a fairly rare mutation of the ALK protein. This mutation only occurred in between 2 to 5% of NSCLC (non-small cell lung cancers). I was nervous, what if I wasn’t a mutant? What next? It turns out I am an ALKY. The trial was a randomized trial, no placebos, so no matter what, I’d be getting treatment. Time to rally the troops again! I was incredibly lucky, once because I was randomized into the drug group, and twice because my tumors were so small they technically weren’t measurable. I should never have gotten on the trial to begin with, but since I was in, I was in. Phew!

I have been on the clinical trial for Crizotinib for seven months now, and all my scans (and I’ve had many) are showing the cancer getting smaller or disappearing. My oncologist has said that if someone didn’t know, my chest CT would look normal. Ah normal, how I’ve missed you! I do experience side effects, and some are not pleasant, but I feel healthy and I have hope that I’ll be around a lot longer now.

Like I said, I’ve never been a gambling woman, and so far in my journey I have bucked all the odds. From diagnosis to treatment some might think my luck will run out. But if I had to bet, I’d bet that the odds are in my favor because I’ve never really put credence in odds anyway. Even 0.1% is not 0. I choose to live one day at a time, and live each day to its fullest, being present, and being hopeful. We are all going to die someday, that’s a guarantee. Not everyone truly lives with the time they have been given, so let’s make that time count whatever the odds!

Anne Marie