Tag Archives: chemo diaries

My Story: Lung Cancer and Chemo and a Changed Life

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An in fusion needle being set in my arm.
Infusion time!

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 →

Fear of Fading Vision – Losing Eyesight, or Just Losing Sight of What Matters

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I’ve lived with a fear of going blind my entire adult life. As a writer and filmmaker, vision has always seemed essential for my career, an important tool in the creation process. But my father lost the majority of his sight, inexplicably and very slowly, as I emerged into adulthood — his retinas detaching in both eyes with doctors unable to either figure out why or stop the process. Just as my identity as an artist and my career aspirations were taking hold, he was pushed into an uneasy acceptance of his fate that left him bitter, angry, and defiant. I watched this, mostly from afar, and never could shake the question of whether the condition would prove hereditary. Then I became a cancer patient and began chemotherapy, knowing full-well that it very likely would affect my eyesight.

Two days ago, I realized that I couldn’t focus with my right eye.

eyes behind glassesIt’s nothing new for me to have a passing problem with my vision. Yes, my prescription had remained the same for over ten years — my glasses gave me better than 20/20 vision and I was content to wear them, never considering surgery to correct my vision. Six years ago, my daughter had inadvertently elbowed me in my left eye, causing the retina to scar and several ophthalmologists had prepared me for the likelihood that the retina would detach at that time. Admittedly, I was freaked out, and over the course of two years, my retina was heavily monitored as doctors prepared a means of preserving my vision in that eye. The scarring was carefully observed and then it did the most unexpected thing: it healed itself. Where there had been fuzzy abnormalities in the center of my vision, one day everything was more or less clear and back to normal. I breathed a sigh of relief and eventually stopped going back to the eye clinic. My prescription remained unaltered. Continue reading Fear of Fading Vision – Losing Eyesight, or Just Losing Sight of What Matters →

Not Dead, Just Cozy

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Relaxing in the chemotherapy infusion center, wrapped in warm blankets.
All wrapped up and nothing to do, at least until my bloodwork results come in.

There are reasons that I enjoy going in for my chemo infusions. It’s nice to get pampered a little with the hot towels and the heated massage chair. (I’m still dropping hints about getting a proper foot masseuse on staff, especially after hearing that there is a massage therapist who works at the main hospital associated with my clinic.) Fresh coffee is always welcome. And the friendly staff is ever-ready with a smile, which I am always amazed that each of them can muster, surrounded by all these cancer patients each day. It cannot be easy, emotionally, being so intimately tied to such an array of physical struggles. And yet, that is one of the aspects that I find so warm and welcoming about my infusion center: from the receptionist to the scheduling department to the pharmacists and nursing staff, I feel like I’m dealing with a warm collection of family and friends who are happy to see me and enjoy the time we have together.

And I love my alone time, though it goes more quickly than I’d like. A couple of years ago, I had time for a brief nap or some quality writing, though these days it seems there is barely enough time to peruse Facebook or catch up on email. I suppose that is a good thing, in and of itself, but I like my time there for another reason, too.

It’s the last bit of escape I have before my “difficult week” takes over. Like a last hurrah after feeling my normal self (or as close to it as I ever get these days), I know it will be at least a few hours before the effects of the chemo start kicking in, a day or two more until I begin to feel really crappy, and so I make the most of it with light-hearted banter and making myself, well, as comfy as possible. Continue reading Not Dead, Just Cozy →

Death, Rebirth, Living On

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Brightly colored (and not colored) eggs.
Even the most brightly colored eggs will sometimes reveal their cracks.

Yesterday was Easter. Today I am in the chair at the infusion center, watching a steady drip work its way into my arm. At some point over the next few days I will likely be scheduling an “exit interview” with a friend who is going to die from his cancer within the coming weeks. There is an interesting, perhaps timely mix of metaphor in all this. The holiday, for those who celebrate its religious significance, is about spiritual rebirth (and literal rebirth for the more fundamentalist among us). I look at these chemicals entering my bloodstream right now as agents of my own rebirth, my second chance at life for as long as it may last, a chance to try and get some things right while I am here. And my friend’s impending death is a reminder that, even with the best of science and consistent faith, these days do come to an end for us all, whether we are ready or not.

Michael March as been, as far as I can tell, a solid Christian and a man of reason. He chose to evaluate all available treatment options, pursuing even the difficult ones when they offered a clear explanation of potential outcomes backed by decades of studies and documented successes. For eight years, he has dealt with various cancers, outliving each prognosis because of committing to his treatments. But at each stage, from diagnosis to remission to reoccurrence, he has been forced to examine his own mortality and come to peace with the idea that he may not see another birthday or Christmas or, as is now the case, another Easter. This was his final celebration of his faith’s Resurrection Story. For Michael, there is a definite end to this existence as we know it, and he is facing it with the determination of ensuring a positive legacy. Continue reading Death, Rebirth, Living On →

The Cancer Sufferer’s Wife

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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.”

This subtle change under the title of her blog was a point addressed in our lengthy conversation via Skype. Continue reading The Cancer Sufferer’s Wife →

Death, Death and More Death, Naturally

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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 →

Cabbage, Then and Now

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Saint Patrick’s Day brings with it my favorite meal of the year. Since childhood, I’ve been a sucker for corned beef and cabbage, my appreciation of these basic ingredients only growing as I’ve aged. And, of course, with the added appreciation of those other Irish staples, the boiled potato and a proper stout with a thick, creamy head. There is a certain luxury to these simple foods, and I await them with the sort of eagerness one might ascribe to a child who waits all year for the chance to unwrap birthday presents and blow out the candles on a cake. A year ago today, I insistently prepared this meal and looked forward to it with anticipation that was, in retrospect, somewhat ill-placed.  Continue reading Cabbage, Then and Now →

Looking Back at the Week Ahead

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Once in a while, I feel like it’s appropriate to update my meager readership on what is going on that is relevant to this blog and my other work, as well as recapping incidental anecdotes about life in general. Such is the justification for this post. Plus, I thought it might be nice to write something short after that last one… And since my next planned post is already proving to be a bit on the longer side, I’m looking at this like a small snack break between meals. (Well, comparatively small, anyway — I’m actually something of a heavy snacker most days.)

Living with cancer has, of course, its own set of challenges. Even if the cancer is well maintained, even if the response to treatment is going well, it complicates life in ways both predictable and unexpected on an ongoing basis. It adds stresses that might otherwise never present themselves. For example, for the past two years, every time I have a headache, no matter how small, it makes me question whether that is a sign of a brain lesion, some new metastases that had gone unnoticed, a harbinger of (for me) yet uncharted radiotherapy treatments or a potential ticking time bomb. And time, always, is on my mind, an urgency there underlying everything that I do; time is a limited resource and there isn’t a day that I’m not reminded of this. Continue reading Looking Back at the Week Ahead →

Luck and Attention

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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 →

Is This What Dying Feels Like?

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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? →