It has been over two weeks since I began taking my new drug, afatinib. Over two weeks of feeling good, feeling like the chemo has been thoroughly flushed from my system even as I have diligently taken these new pills, feeling the best that I have in three years. I have been keeping a journal this time, chronicling how my body is responding each day, trying to pave the way for a better understanding of how to live with this new treatment. For the first week, anyway, it almost seemed like it was going to be too easy.
There are two weeks of video updates on my Patreon feed, talking about how great I feel and wondering how bad the side effects will be once they really kick in. I had been prepped by my oncologist that it was very likely that I would experience worse side effects than I had with the chemo I had been taking. This was based on how well I tolerated pemetrexed, the chemotherapy drug that had kept my cancer at bay for so long, but not so much on patients in general having a particularly tough time on afatinib. Which is not to suggest that I expected a walk in the proverbial park with this new drug.
Still, the first week was amazing. It was almost like I was taking nothing at all. Sure, there was some digestive stuff going on, but nothing outside of the realm of what I would have been used to in a previous life if I decided to live off of bean burritos for a few weeks. And I love a good burrito, so it would be worth it. But by day eight, I realized that the side-effects of the drug were presenting themselves quite visibly. Continue reading Spoiler Alert: Side-Effects Show Up→
My recent post on dealing with change and adversity was inspired in no small part by a change I am facing in my own life, one rife with uncertainty and heavy with anticipation. The last CT scan I had showed that my primary tumor, the one by which we gauge progression or lack thereof, was still within the technical boundaries of business as usual. That is to say, its lateral dimensions had not changed significantly since the previous scan, and overall had not grown enough over the similar measurements from a year or two years ago to precipitate anxiety. But CT scans are, for lack of a better term, a bit fuzzy. The images are fairly clear, but the data is difficult to measure with absolute precision.
Because CT scans are essentially three-dimensional, but are viewed on two-dimensional screens, comparisons between scans are inherently imprecise. The angle of a subject’s body, how inflated the lungs were, the position of the subject within the imagining chamber, all figure into subtle differences between the final scans. On top of that, because the images are basically multitudes of cross-sectional snapshots, a comparison must be made by selecting the closest approximation to the “same” image between scans from different times. I’ve looked at lots of these — in fact, I keep digital copies of all my scans for reference or posterity — and I’ve used the tools to line up and measure my tumor as best I can.
And in two dimensions, at the standard viewing cross-sectional approximation, my mass looks very similar from scan to scan, every three or so months since this process began. My chemotherapy was clearly doing what it was intended to do, which was to prevent progression of the disease. Progression is generally defined in terms of the length of the tumor, but we all know that tumors are bundles of cells that grow and change along more than just one axis.
I was never under any illusion that the chemo would cure me — there is no official cure for Stage 4 Lung Cancer. Any time that the chemotherapy could afford me by maintaining stasis has been considered a luxury and at over two and a half years on this particular regimen, I have been the longest continuous success case that many on my medical team have known. So the next time I see most of them will be a special, bitter-sweet occasion.
My story begins this way, elliptically, perhaps by design or perhaps because this is two days into my cycle… 48 hours ago, I was sitting in a comfortable chair at my chemo spa, settling back for a needle while a warm massage pulsed against my back. This was my 38th or 39th infusion since I began chemotherapy in December of 2014, almost exactly 2.5 years ago as I write this, on consistent three-week cycles with only one or two exceptions made for travel. As a Stage IV NSCLC patient, I suppose this makes me a “lucky” fellow because I tolerate my treatment well and seem to be holding steady through each of my scans. Life isn’t what I used to expect it to be, but that isn’t all bad. I’ve learned a few new tricks, I’ve changed my focus, I’ve accepted some limitations and tried to defy others.
In June of 2014, I was, as they say, the “picture of health.” I was working out again, moderately at least, for the first time in years; I was excited about starting a new phase in my career and had begun actively interviewing for positions that would give my life new structure and alleviate a huge amount of the stress I was under financially and emotionally. It had been a complicated few years leading up to this point and I had been paying for a few poor decisions, some unforeseen misfortune in the housing market, a few stumbling blocks in my home life, and regrets that I should never have allowed to affect me (but I had). Before this, I had a relatively successful career in film and video production, mostly in commercials but with a few independent movies under my belt and forays into other mediums, but the work itself was costing me a connection with my new daughter and domestic strain that was simply not worth exacerbating. So I decided to phase that work out and focus on what I loved, which was writing.
And I had some early success. A few inroads were made with some of my work, but ultimately it wasn’t enough and I tried a number of options to keep myself going for a year, then another, then one more… By the time my daughter was 8, I realized that I needed to alleviate the burdens that had been increasingly placed upon my wife so that I could make my writing pay off, and I began pursuing work in media production again, but this time as a staff member with an established company rather than as the freelancer I had always been. I wanted something that could be counted on, with a salary and a 401K and regularity — things I had not had at my disposal in many years. I had health insurance through my wife’s work, which was actually very good, and for which I would soon be grateful. Continue reading My Story: Lung Cancer and Chemo and a Changed Life→
Through the wonder that is Social Media, I’ve connected to a wide range of people with their own personal cancer stories. As an extension to this blog, and as part of the research for both a broader understanding of the treatment options out there in the big, wide world, and the book I have been slowly developing to help guide future patients and caregivers through this often difficult and confusing process, I have been collecting interviews from a growing pool of diverse perspectives. Most of these interviews end up in my Patreon feed, where my podcast/video blog has its official home.
One of my recent acquaintances was the wonderful Lizz, who writes a lively blog called The Drop Off, which recently acquired the subtitle of “TRAVERSING THE INCURABLE, HELP AND HUMOUR FROM A CANCER SUFFERS WIFE.”
My mother had recently received news about five friends and relatives dying within a four-day period. It seemed really stacked up, and then she got a call that her last remaining uncle was going into hospice care. While it would be another couple of days until he died, the early warning essentially brought the total news to six in under a week. Granted, she is “of a certain age” at which it is expected that her peers and associates will be ending this existence at an increased rate, especially those markedly older than herself. It happens. It’s a part of life. And it isn’t talked about enough.
As a culture, death makes us squeamish. It’s hushed up, spoken of mainly with euphemisms and generally avoided for its awkwardness. Worse, it is often treated as an embarrassment. Oh, why did Grandad have to die so…inconveniently? Perhaps he should have just gone on vacation and disappeared… “I’m sorry for your loss,” they all say, pitying you for being unable to arrange a cleaner exit for the dearly departed. But death is messy, sometimes. Death brings hurt, upends the cozy lives of the living, leaves an overwhelming amount of loose ends.
But death is a natural part of life — one that cancer patients often have staring at them right over the proverbial shoulder. In February, I interviewed Michael March about his, as he put it, “Final Journey.” Michael is dying from throat cancer that migrated to his lungs, after eight years of dealing with various cancer issues (including periods of remission). Our conversation ran the gamut, from the lack of education that people have in talking about death to the spiritual comfort some seek during their period of decline. Michael also opened up about the fear of suffering that still remains after having made peace with the idea of dying. Continue reading Death, Death and More Death, Naturally→
One of the great wedges used by the anti-medical and anti-science proponents of these alternative treatments is the suggestion that the mainstream medical community cannot be trusted because they are all about the profits and not about actually curing disease. The suggestion is that Big Pharma is something of a shadow organization, bribing doctors and hospitals in order to maximize their corporate wealth — and there is just enough truth to thatfor it to be believable. The conspiracy generally lumps in a wide range of health practitioners, insinuating that MDs are systemically part of the problem and that anyone who speaks out against potentially deadly alternatives is automatically a shill for pharmaceutical companies. I get that one leveled at me from time to time, in spite of the fact that I advocate for a well-rounded and well-researched approach to personal care.
As the alternative crowd is fond of saying, if you want to know who to trust, you should follow the money. See what any particular site has to gain for spreading its message and, when possible, look at personal motivations from the authors. I have been fairly transparent in this regard, but perhaps I could go farther with my history. I am no “True Believer” in the medical establishment, at least not insofar as I put blind faith in doctors to automatically do what is right and best for every patient. I do think that most doctors genuinely try and that they believe they offer the best solutions. But I have also witnessed patients being treated like cattle, given no real consideration, and pushed toward drugs or treatments they probably neither needed not benefited from. And I fervently believe that my own father was pushed toward an early death by being overly and improperly medicated by too many “specialists” who failed to communicate with one another or fully attempt an understanding of what was going on with his health. Continue reading The Truth About the Truth About Cancer – Myth of the Wellness Warrior Part 3→
I recently had the good fortune of interviewing a long-time friend and fellow Stage 4 cancer patient for my podcast, The Deep Breath. Usually, the podcast is just me running off at the mouth, dispensing my heavily biased advice or addressing questions that have come up in one way or another. Sometimes I just talk about my personal experience. My best (or at least my own favorite) recordings are those in which I interview someone with a different perspective than my own or from whom I can learn something interesting. This one was different, though, and required a different treatment.
When I think of Mike, I always imagine him as he was in high school. That is mostly due to the fact that I’ve only seen him a scant handful of times over the past 30 years, and none of those were particularly recent. We have stayed in contact primarily because of social media, both of us being part of a wide group of shared friends who have remained more or less civil toward one another even as we have spread apart geographically, politically and, outside of these virtual networks, socially. His story began to intertwine more tightly with my own about a year ago when he announced on Facebook that he had been diagnosed with colon cancer and was about to embark upon an uncertain course of treatment with chemotherapy. Continue reading Luck and Attention→
As a cancer patient on regular rounds of chemotherapy, this is a question that I have often asked myself. When I look in the mirror and see a body that I don’t recognize and the effects of the drugs on my brain have me under a heavy fog of malaise, it is easy to drop into the trap of defeatism. I have stared into my own eyes, wondering what had become of their prior yearning or that sly glint I imagined they used to have, and asked the mirror if this is what it feels like to die. To waste away into a reflection of what I was. To effectively disappear from the world, slowly, margin by margin, breath by breath. Continue reading Is This What Dying Feels Like?→
December 2014 marked the beginning of my chemotherapy, and two full years are now complete. This already puts me well beyond the “statistical expectation” for continuing to kick around, allowing me to enjoy another holiday season with my family and, for better or worse, getting me closer to my goal of actually going back to work full-time at some point in the (hopefully not too distant) future. A third year on chemotherapy may have seemed like a remote option at one point, something that was a distant hope not to be taken for granted, but now is an accepted part of my ongoing plan, the “new normal” that has been often talked about, what I have simply become quite used to in my daily existence.
So I take a moment to sit in my gratitude for what modern medical science has afforded me. As I write this, I am one day past my infusion, feeling only moderately tired because I woke at 3:30am and was unable to get back to sleep due to the way my steroids get my brain spinning in the night. Ironically, that same effect does not seem to occur during the day, when my mental capacities tend more toward fatigue and fog as the hours progress. Chalk that incongruity up to sleep deprivation, I suppose. The good news is that the steroids will have mostly worn off by tonight and, with any luck, I’ll be back to sleeping — or at least being able to go back to sleep — mostly through the night.
A month or two ago, I had a discussion with my oncologist about how I felt fewer side effects from the chemo, as though it had become progressively easier for me to tolerate over the past year, and especially over recent months. It gave him pause because, he informed me, the body does not generally “learn” to process the chemotherapy drugs more efficiently and patients do not build up a tolerance to the chemicals. If that were happening, for whatever reason, it might indicate that the drugs would no longer work due to being processed out of the system too rapidly. My most recent scan, taken last month, clearly indicated that the chemotherapy is still working the same that it had been — so obviously the infusions are effective at doing what they are supposed to be doing. The observation that I am left with, then, is that most likely I am simply used to dealing with the symptoms to a greater degree. Drilling down a bit more, however, there have been a few changes made in my routine after the infusion, specifically trying to be more active even on my more difficult days. My oncologist confirmed that this approach was most likely responsible for how I am “recovering more quickly” than I had been earlier in my treatment. Continue reading The Chemo Diaries: Year 3 Begins!→
This is an excerpt of my podcast, The Deep Breath. To hear the full 24 glorious minutes, including the explanation for my especially raspy voice (hint, it isn’t because of the cancer), please follow this link to my Patreon Page that hosts the podcasts. In celebration of Thanksgiving and the upcoming completion of 24 months of chemotherapy (there does seem to be a theme to the numbers here), this episode is completely free to listen to even if you are not yet one of my subscribers and patrons of this site.
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