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→
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.
My friend Michael March was slated to do a follow-up interview — his “Exit Interview” as he called it — but our time was cut short on Easter Sunday. Two days prior to that, he had received a box of bobbleheads that are part of the fundraising program for his new foundation. This was his final video, the last chance he had to express his gratitude and hopes for what would come. In lieu of our planned conversation, his mother has given me permission to post this in his honor.
It should be noted that Michael’s Peter is his cat.
The day before he died, I understand that he re-watched the conversation we recorded for The Deep Breath. He had spoken to me about how important such conversations are, and how he wanted to help others through sharing his experience. In the end, however, we are left with only a few parting words from Michael. He had prepared the following farewell to be posted on his Facebook page after his death.
After a long struggle with my third cancer, I lost the fight. I died on April 16th.
I hope no one is sad about my passing. I had a wonderful life, filled with untold adventures and experiences. There is no reason to be sad. Death is just another part of life and for some, it's just the end we all meet. For others, it is not the end, but the beginning of what comes next. I'm looking forward to what comes next.
Thank you all for being a part of my life and try to remember me.
I hope one day we all get to meet again. But if we don't or when we do, between now and then, please look around, and find a way to make the world you live in, a little bit better.
While the official site of the Michael S. March Foundation was not fully operational before he died, there are links on it to the programs he was supporting and his other web pages. It is a great starting point to get to know the man and his values, and maybe to help support his vision now that his legacy has been passed along to the rest of us.
Rest in Peace, Michael.
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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.”
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→
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→
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 just put about two weeks’ worth of coffee into my body, so please consider that as you read these proposed guidelines for political postings on social media.
I decided to put these down because I have noticed so many friends falling off toward these two camps: those who are tuning out completely due to political news fatigue and those who are spun up into a frenzy of posting and reposting and forwarding and generally being outraged all the time (or at least every fifteen minutes between the odd stress-reducing cute animal pic or positivity meme).
The fact is, neither approach is helpful, and probably not healthy, either. We should all remain engaged, after all, or at least aware of what is going on around us. But we should not get lost in the process, nor should we be a part of the system of misinformation that has plagued our national politics for a long, long time. (That’s right, it is almost a national treasure, this “fake news” thing, and it goes right back to the beginning of our country’s history. That it appears to have reached some new apex in the past year is something of a natural progression, albeit a sad one. The challenge now is for the media to really keep it in check as it had done, more or less, for the past 120-ish years since the Hearst-induced Spanish-American War.)
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→