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!