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.
The summer of 2014 was greeted with great optimism; my interviews were more than merely promising and everything felt right. Everything, that is, except for my left shoulder — in my exuberance, I’d torn my rotator cuff and my doctor put me on a brief round of Prednisone when it failed to improve on its own or respond to OTC painkillers. At the end of my round of Prednisone, the shoulder did not feel any better, but I went through a sudden bout of withdrawal that remains one of the nastiest feelings I have ever experienced, and it left my immune system depressed to the point where I contracted bronchitis, which settled into walking pneumonia and a dramatic shortness of breath. For this, I was put on antibiotics and sent for an X-ray to verify pneumonia, never suspecting that something else might show up.
After all, I was only 46, I’d been in good health, I was not a smoker and I had never worked with risky materials. So the image of a “mass” on my X-ray was a bit of a mystery to everyone. The shortness of breath was being ascribed, at least partially, to a slightly collapsed lung for which nobody had much of an explanation, though later it was determined that my primary tumor may have contributed to “pulling” the lung upward from the diaphragm. With continued treatment, the lung has returned somewhat to its expected shape and size, but the shortness of breath itself began easing up in accordance with each new test or exam, beginning even with the X-ray that revealed the mass. The day of my EKG, I was breathing better. The day of my pulmonary tests, I was breathing better. By the time I was in for a PET scan, pumped up on gamma radiation, I felt comparatively like a million dollars. My thoracic surgeon could not believe how I appeared to improve and stated that he could not jump to the conclusion that I had cancer — I did not fit the profile at all, and my increased energy, expanding lung capacity, and my overall feeling of increased well-being indicated that I simply might have been suffering from some systemic infection.
But we had to biopsy something to be sure.
Fortunately, we could bypass the lung and go straight for an active spot in my hip that showed up on the PET scan. It was a quick drilling, by now in early November of 2014, almost three months since my X-ray. I had plenty of time to dive down a myriad of Google-provided rabbit holes during that period. In fact, while I held out hope that this was “just” an infection I was working with, I was well aware of the likelihood that it was truly cancer. The tumor size was borderline for determining the stage — but the PET had shown increased cellular activity in a handful of lymph nodes and about six spots in my bones, so if it was cancer, I knew it had metastasized and I also knew that the statistics on this were very, very grim.
Which was why I instructed my family and friends not to look at the statistics and asked them not to research it at all until I knew more. After all, I was not going to treat myself as a statistic and I certainly did not want to be viewed as one. But beyond that, I also knew that those statistics were out of date, at least five or ten years, and therefore could not represent the kind of treatment I would be likely to have. Additionally, I knew that those stats included a heavy percentage of elderly smokers with other, associated health problems that I would not be facing. It made sense to eschew the numbers and instead focus on figuring out what was wrong and how to treat it — but the stress of not knowing was beginning to wear me down even more than the shortness of breath and prior cough had been able to do.
The material from my hip confirmed that I had adenocarcinoma of the lung. It made sense. And, in a strange twist of fate, I was greatly relieved. Now I knew for sure what I was dealing with. Plans could be made. My new oncologist was a wonderful research scientist who saw me as a prospect for a new clinical trial, but another biopsy of a lymph node was required to get some uncalcified DNA, so that it could be checked for necessary mutations that it turned out I did not have. The clinical trial was not in my cards. Neither was surgery or radiation. We talked over the options for chemotherapy, what it might or might not do, how long I might have before going into hospice, and I went for a second opinion to an oncologist that my insurance company wanted me to see.
The second opinion sounded a lot like the first, except that he would use a different chemotherapy drug that had been around longer. We talked over the differences in side effects and at the end, this oncologist encouraged me to go back to the one I began with because, as he put it, “why would you even want to see me” if I had an in with a research facility? He was right and I appreciated his integrity on this; it encouraged me to follow my gut and trust the direction I was inclined to go.
And that was into an undefined, open-ended treatment schedule of chemotherapy. It seemed that everything I had ever heard about chemo was terrible. The Internet was full of horror stories. But the vast majority of those appeared to be selling something, even if only indirectly, and were constantly pushed by websites that stood to gain by frightening people away from mainstream medical care. I filtered out the noise as best I could and focused on the scientific literature, the studies that had been done, and the drugs that were being suggested for me. My oncologist told me that the first three months would tell us a lot. They did.
Ultimately, I underwent six rounds of combined Carboplatin, Alimta and Avastin, beginning in December of 2014 just after the holidays. I had been scheduled to fly to Zurich a week or two prior but had to cancel that trip, part of a job I had been prepping that would potentially have had me working in China within a few months on a robotics exhibition — but I had to back away from the whole thing as my treatment plans came into focus. I finished up a small video project that coincided with my first round of chemo, working with an associate who had, himself, undergone treatment for colon cancer less than a year earlier. We talked symptoms and side effects more than a few times during the two or three weeks we worked on that project, and I was somewhat amazed by how little the effects of chemo seemed to bother me during that first round. By round two, the amazement was dissipating quickly. By the time of my first scan, three months into treatment, I was unable to work much at all. But the scan showed promise, and we collectively decided that I was on the right path.
After 18 rounds of combined treatment, six months into the process, the second scan showed a marked reduction in the primary tumor and very little activity throughout the rest of my body. The bones where activity had been previously noted appeared to be remodeling, indicating that the cancer had been reduced or eliminated inside of them. These were all good signs, but the cancer was not gone.
At this point, the Carboplatin had to stop. It was time for maintenance therapy, and I was being given a choice between staying on chemo with my Alimta or just taking Avastin, which works by preventing the cancer tumors from feeding themselves with new blood vessels. Personally, I could not wait to stop the Avastin — I blamed it for my constant nose bleeds that had led to the development of a perforated septum and a near constant whistling sound in my nose. My oncologist was happy with my decision to stick with the Alimta, and it proved to be a good call.
For one thing, the Alimta on its own was markedly easier to tolerate. Moreover, however, I appeared to respond well to it. There was some continued reduction in the primary tumor, though not much, and then for two years, it has held relatively steady. I know it will not last forever, and I look forward to getting away from the constant routine of feeling marginally crappy every three weeks, dealing with fatigue and a fuzzy brain and not knowing from one cycle to the next exactly how my body is going to respond. But I do not look forward to the uncertainty of a new treatment, even as I am excited to advance to an immunotherapy or whatever else awaits on the horizon.
But life, it turns out, is not about certainty. It is not about clear-cut options or knowing the outcome of every scenario. Life is messy and, if you must place meaning on it, then life is supposed to be messy. That is how we learn and grow and evolve into who we are destined to become.
The hazy image of my future that floats around in the waves of my chemo brain does not tell me much. I have hopes and dreams and aspirations, just as I always have, and among them is the desired phrase of “no evidence of disease.” Whether or not I ever hear that directed at myself is perhaps of minimal importance in the grand scheme of things, as nice as it might be. I no longer expect to grow old in the manner I used to believe I might, but I also do not expect that I will die anytime soon. I’ve let go of these expectations entirely, realizing that they are meaningless. Life happens. Death is inevitable and unpredictable and my only goal regarding it is to live long enough to die of something other than my cancer. Beyond that, my focus remains on living — not merely staying alive, but noticing the journey, and participating every single day.
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