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→
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→
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!→
It’s been over a week now since I spoke at the First Annual Breathe Free Walk to End Lung Cancer, which gave me a unique opportunity to connect with a few caregivers and fellow patients. I was honored to be able to offer some (non-medical) advice and reassurance, as well as to hear the heartfelt stories that I was lucky enough to have shared with me. Although I previously posted the transcript of my short speech, I’m including a video of it below, along with the opening remarks provided by the event’s beneficiaries, the American Lung Association and the American Cancer Society.
I am speaking at the First Annual Breathe Free Walk to End Lung Cancer sponsored by the American Lung Association and the American Cancer Society. The walk is designed to raise awareness of Lung Cancer and funding for research. Following is a transcript of my brief comments to take place before the walk.
November 6, 2016 : Opening Remarks for the Breathe Free Walk to End Lung Cancer, Fort Mill, South Carolina
I’m pretty darn happy to be here. Two years ago today, I was diagnosed with inoperable metastatic adenocarcinoma, more commonly referred to under the umbrella term of Stage IV Lung Cancer. As a relatively young non-smoker who ate healthy food and led an active lifestyle, took my vitamins and got plenty of sleep, you might imagine that this diagnosis was a bit of a surprise. But if you’ve followed my story on my blog, as I know some of you have, then you also know that when I started this journey I did so with a substantial amount of faith. That same faith is shared by the organizations sponsoring this event, and by proxy, it is shared by you who have come here today. And that is faith in modern medical science.
We all have faith in lots of things. And there are different types of faith, to be certain. Spiritual faith often plays a key role in the emotional health of patients, perhaps making it possible for them to endure difficult treatments or to remind them that there is something greater of which they are an important part. Faith in our friends and family can be essential as we worry about things we may not be able to take care of on our own, even for those of us who have a hard time leaning on others. These expressions of faith, they allow us to trust in some kind of a safety net that will be there in the event that we are pushed or slip or even jump headlong. And undergoing treatment can feel any of those ways. Continue reading The Breathe Free Walk to End Lung Cancer→
I take the commitment of a Halloween costume seriously. When I was a kid playing with stage makeup, I made myself look like I had been beaten so badly one Halloween that people forgot I was in costume and wanted to take me to the hospital. This year, I contemplated going as my cancer diagnosis. It seemed appropriate, after all, because I had the serendipity of getting my infusion on Halloween day this year. Just seemed perfect. But then I was thinking about it and, quite frankly, cancer just isn’t as scary as it used to be.
So I went with the most frightening costume I could come up with: a candy fiend. After all, little is as horrifying as someone coming off of a sugar binge. And my paunch is perfectly highlighted by the tight-fitting shirt that I have now worn for somewhere in the range of 6 to 10 Halloweens. (What can I say, some things are simply classically insidious.)
While a few years ago the idea of a giant tumor might have been amusing to me, and the notion of cancer in general seemed like a properly frightful subject, the story around these has changed for me. Hollywood, of course, still relies on cancer as it’s go-to meme for unsettling disease requirements, but then Hollywood is creatively lazy and uses the most basic shorthand it has for easy emotional manipulation.
In this modern world, there are plenty of reasons to be cautious. Digital devices almost seem to control our lives. They take up our time, luring us into the virtual world for entertainment, allowing us to be more productive by keeping us linked to our work 24/7, lulling us into a world of social networking that never requires us to physically interact with other humans. It is no wonder that authors of speculative fiction depict alternative worlds where we are literally plugged in.
In offices and homes across the developed world, it is more likely than not that there will be active Wi-Fi or Bluetooth connections running all day long, often from multiple devices. In the past twenty years, as wireless connections have become more prevalent, concerns have been increasingly raised about their safety. The World Health Organization (WHO) took notice in the late 90s and began looking at all the evidence that was piling up from studies in many countries. Key to this awareness were the growing trend of Electromagnetic Hyper Sensitivity (EHS) and the concern that Electromagnetic Frequencies (EMF) could cause cancer.
I was going to write about working without wearing any pants, and how pantsless careers are sort of ideal, but instead I am going to offer some thoughts on death and dying.
Most of my mornings begin like this: the low-impact sport of serving up espresso drinks at my daughter’s school followed by a cool down period of errands on the way home. Sometimes, since this is Los Angeles and there is always a bit of traffic to contend with, I have time for a phone conversation or to catch up on my quota of NPR. The ride home also gives me time to ruminate on important issues and subjects for my blog. Sometimes a conversation sparks a new thought process, twists the direction I had planned on going or otherwise derails what would have been a perfectly good fluff piece. By way of example, I recently conversed with my mother about my father’s final days, thus running the train of intention for this post completely off the rails. Continue reading The End of Life and How to Die→