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.
It’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→
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. Likea 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→
It’s better than coffee. You’ll feel the positive effects much longer and it costs less than most of those single-serve pods you’ve been popping in the machine each morning. (Well, it’s going to depend on the brand, but if you drink three cups made from the cheapest pods, that’s still about a buck.) Plus, for only $1, you get the satisfying uplift for yourself and you are facilitating it for others who may not have that extra dollar to spend. It’s like a gift that keeps on paying itself forward while you indulge in its own decadent luxury of good vibes and luscious creaminess — without the caffeine crash and subsequent withdrawal headaches.
Of course, I’m talking about my subscriber feed on Patreon, full of delicious video extras and exclusive content to compliment the work I do here on the blog. Or, more specifically, to support the work I do here on the blog, and make it possible to continue. But the great thing is that the content available on my Patreon feed is so incredibly uplifting that it feels like a David “Avocado” Wolfe meme without any of the bad aftertaste of having ingested a wheelbarrow full of meritless detritus or the nasty run-off from the stream of living crazy that spills out under the corners of innocuous self-evidence.
Sure, I might not offer many super-easily digestible single-frame tidbits of wisdom and beauty, but I strive for something other than a glazed-over sugar cube in the diet I offer. Plus, I’m actually a good storyteller, so even if you don’t like me personally, there is some entertainment value to be received here. It’s a good story, too; subscribers get more insight into my personal journey down this winding road of life. Okay, maybe it’s a sad story in some ways (spoiler: I die in the end), but it is populated with some particularly interesting and beautiful characters and serves up, as they say in the biz, plenty of laughs.
So what have you got to lose? A measly dollar? (Although, like Vegas, you are free to gamble on your enjoyment factor by seeing if it increases exponentially with larger wagers.) Give it a try. You can set it and forget it, keeping your access going month after month, and have the peace of mind knowing your dose of inspiring awesomeness is only a click away.
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Bonuses that come with more subscribers:
The more subscribers I have, the more inclined I will be to edit out the dead air in my interviews. Getting your friends to sign up saves you time!
Cat videos! There, I said it.
Those nasty advertisements will stay away. All of this costs money, but I hated having ads on this site. Subscribers are the only reason that it remains ad-free. Whoo-hoo!
The more subscribers I have, the more likely I am to get truly interesting interviews posted. That isn’t to say my interviews aren’t already super-interesting (they are, they really are), but having more subscribers equates to a larger audience, which in turn opens the door to a wider range of celebrity guests and so-forth. (Celebrity, of course, being a relative term.)
But mostly, this is about messaging, and a dedicated base can help me to help others.
I’m trying to change the narrative on cancer.
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I’ve mentioned the blog, Every Breath I Take, before, and spoken highly of its author, Lisa Goldman. Like myself, she was in her 40s when she was diagnosed with Stage IV Lung Cancer — although she was in her very early 40s, compared to my “mid-ish” — and, also like myself, she was a non-smoker. Her most recent post is an impassioned response to a special issue of Cure magazine, dedicated to lung cancer, that resonated as a major fail from the publication.
She also set up a petition to encourage the media to stop promoting the lung cancer stigma.
It is in the best interest of all patients to re-write the cancer narrative away from being a smoker’s disease, and away from being an automatic death sentence. While rates of the disease continue to climb and it remains the world’s most deadly cancer, clearly it is not the cancer that we have been sold on for so many years. Smoking is a stupid habit and greatly increases risk, and it was a useful tool to make lung cancer the whipping post for awareness. But the resulting stigma facing lung cancer patients is unwarranted.
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→
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→
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→
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!→