Tag Archives: wellness

Frying Pan, Meet Fire – Leaping from One Therapy to Another

I knew that I would not stay on chemotherapy forever. So getting to the point where I ended my “chemo journey” was not completely surprising. In fact, I had anticipated that a change would be good for some time — after over 2 1/2 years of the same routine, not only had it begun to gnaw at me each time I faced another infusion and ensuing side effects, but there was something of a “gut feeling” that the chemotherapy drug I had been on for so long had done about all it could do. I was probably influenced a lot by the promise of Immunotherapy drugs that had become the media darlings of the cancer world. When my oncologist said it was a good time to consider another approach, I was eager to do it.

Besides immunotherapy, for which I had hoped to join a clinical trial, there was the possibility that I might harbor an actionable gene mutation for my adenocarcinoma. My initial genetic analysis from a biopsy prior to starting chemo had shown none of the mutations that were being directly treated at that time. But a couple of years makes a big difference in the cancer world, especially with the increasing rate of progress science has been making over the past few decades. A re-analysis of that old biopsy showed nothing new, but a quick, painless liquid biopsy — two simple tubes of blood and fifteen minutes of my time — revealed that I harbor a fairly rare mutation, one that affects roughly two percent of  the adenocarcinoma subset of lung cancer patients: ErbB2, also known as HER2.

This shifted gears for me regarding the drive down my treatment path. It also made me shift perspective. There is the question, now, of whether finding myself in such a cancer minority is a sign of good fortune. On one hand, it means that my genetic demographic is not highly studied — the downside to minority group patients is simply that there are fewer of us to put into clinical trials. Flip that over, however, and it makes the trials that have been done highly specific — and it makes the case studies on patients with this mutation also highly specific. Which in turn suggests that this might be a very positive development after all. Continue reading Frying Pan, Meet Fire – Leaping from One Therapy to Another

Side-Effects I Won’t Miss: The Chemo Diaries, a Coda

My treatment is far from done, my “cancer journey” only partly traveled, but I am saying goodbye to chemotherapy — at least for now. Forty rounds of infusions came to an end last week and, though my brain is fatigued and my body is a bit of a mess, I’m taking a moment to appreciate the things I definitely will not be missing.

Topping my list, even above the malaise and nausea that sometimes follows my treatment, is:

#1, The Uncontrollable Gag Reflex.

It’s been a nasty thorn in my side, that gag reflex. Just brushing my teeth will set it off, causing me to wretch over the sink, even if it has been a long time since I ate. And scents of any kind have been known to cause gagging, too — and not just the smell of rot or the cat box or whatever was thrown in the garbage can the night before, but, yeah, all of those, too. Goodbye, gag reflex!

#2, Grimy, Oily-Feeling Skin

The days following my infusion are better with frequent showers. As I purge toxins, I always imagine that I smell horrible — and, in fact, I often cannot stand my own odor. But beyond that, my skin just feels gross. I’ve had the weirdest blemishes, well beyond any teenage acne I experienced in my wayward youth, and it wasn’t always easy finding soaps that I could tolerate in the enclosed space of a shower. Waking with a slick layer of grease on my face and a sticky sensation all over my body (worse on hot days, of course), mixing thick perspiration and whatever else is pushing through my pores, is an experience I am more than ready to be done with. Continue reading Side-Effects I Won’t Miss: The Chemo Diaries, a Coda

Common Sense, Clarity and Wellness Warrior Lies

As long-time readers know, I take issue with a number of high-profile “wellness warriors” and anti-science advocates who claim to offer “natural,” “holistic,” or simply “alternative” treatments that can cure cancer or prevent it entirely. Chief among these are Chris Wark and Ty Bollinger, two people with absolutely no scientific or medical training and tons of bad advice. They are part of a large network of disreputable and largely discredited hucksters, many of whom get by on their claims by offering just the tiniest shred of truth mixed in with their hyperbole and insidious messages. They thrive in our increasingly anti-intellectual culture, where headlines and sound bytes sway their customers and their “fan base” into believing that there is substance to their messages. This is why, more than ever, it is essential to take a critical approach to all the medical headlines that are presented, and especially those making extraordinary claims.

The well-established and professionally vetted website, Healthline, has a very good primer on the subject of spotting fake medical news. It could hardly be more topical. There is nary a day that goes by when some website or other isn’t making absurd claims about the latest health craze or danger. Whether it is bloating the risks of GMO foods or misrepresenting the cancer risk from eating red or processed meat, there are more sources out there in the ether intent upon cherry picking data or simply removing it from context in order to sell their point than there are serious outlets for the reporting of science news. Part of the problem with this is that science news isn’t usually considered very sexy or commercial, but a bigger problem is that it is generally difficult for most people to fully understand.

And capitalizing on that, we have opportunists like Chris Wark, a self-proclaimed guru on defeating cancer without chemotherapy. Duly note, of course, that Mr. Wark was cured through surgical intervention and, while chemotherapy was recommended as an adjunctive treatment to lower the risk of future metastasis, there was no indication that he had any actual, existing metastases that needed treatment. To put it bluntly, he was one of the lucky colon cancer patients who had it all taken out without any recurrence. This had nothing to do with whether or not he received chemotherapy, and there is no way of knowing how he would have responded to such treatment or whether his “lifestyle” choices have had any bearing whatsoever on his post-surgical health. Continue reading Common Sense, Clarity and Wellness Warrior Lies

Chemo and I Had a Pretty Good Run

My recent post on dealing with change and adversity was inspired in no small part by a change I am facing in my own life, one rife with uncertainty and heavy with anticipation. The last CT scan I had showed that my primary tumor, the one by which we gauge progression or lack thereof, was still within the technical boundaries of business as usual. That is to say, its lateral dimensions had not changed significantly since the previous scan, and overall had not grown enough over the similar measurements from a year or two years ago to precipitate anxiety. But CT scans are, for lack of a better term, a bit fuzzy. The images are fairly clear, but the data is difficult to measure with absolute precision.

My first CT scan machine from October 12, 2014, and still one of the more peaceful places I know. I have taken about a dozen rides through that hole by now.

Because CT scans are essentially three-dimensional, but are viewed on two-dimensional screens, comparisons between scans are inherently imprecise. The angle of a subject’s body, how inflated the lungs were, the position of the subject within the imagining chamber, all figure into subtle differences between the final scans. On top of that, because the images are basically multitudes of cross-sectional snapshots, a comparison must be made by selecting the closest approximation to the “same” image between scans from different times. I’ve looked at lots of these — in fact, I keep digital copies of all my scans for reference or posterity — and I’ve used the tools to line up and measure my tumor as best I can.

And in two dimensions, at the standard viewing cross-sectional approximation, my mass looks very similar from scan to scan, every three or so months since this process began. My chemotherapy was clearly doing what it was intended to do, which was to prevent progression of the disease. Progression is generally defined in terms of the length of the tumor, but we all know that tumors are bundles of cells that grow and change along more than just one axis.

I was never under any illusion that the chemo would cure me — there is no official cure for Stage 4 Lung Cancer. Any time that the chemotherapy could afford me by maintaining stasis has been considered a luxury and at over two and a half years on this particular regimen, I have been the longest continuous success case that many on my medical team have known. So the next time I see most of them will be a special, bitter-sweet occasion.

Because the time for change has come. Continue reading Chemo and I Had a Pretty Good Run

Beyond the Shame of Change, Adversity, and Grief

Nothing is forever, as the saying goes. And it seems true in terms of human experience. Change is inevitable. You can’t please all the people all the time. Time will tell. What doesn’t kill you makes you stronger. But, of course, you can’t judge a book by its cover because the grass is always greener on the other side. Also, that thing about picking your friend’s nose.

I am clearly not above the occasional inspirational bracelet.

Just not that one about everything happening for a reason. I’ll concede that there are certainly arguments for cause and effect — in fact, very much so, which is essential understanding when it comes to actually dealing with the issues that are thrust upon us in spite of our best efforts and desires. To suggest that everything happens for a reason is immensely wrongheaded and, even with the best of intentions, is ultimately unhelpful.

This does raise the issue — when suffering or change of any sort occurs — of how one is to cope if there is no purpose behind the suffering or change. Continue reading Beyond the Shame of Change, Adversity, and Grief

The Meaning of Normal

I have been fascinated by the suggestion that life with cancer somehow equates to “a new normal” in my families existence. I don’t know what that is supposed to mean, exactly; isn’t “normal” supposed to be an objective center, a median experience, the fulcrum of an ever-swinging scale? But nowhere does the relative nature of normality present itself so clearly as with the slide into a chronic, managed illness.

Read the full post here.

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Critical Thinking and the Rush to Organics

From the Forbes.com article by Steven Savage, “Why I Don’t Buy Organic, And Why You Might Not Want To Either”

In the spirit of an interview I will be conducting tomorrow on Critical Thinking, I invite you to check your confirmation bias before reading the link below. Now, more than ever, this is becoming an essential skill, especially in the age of social media and 10,000 clicks per second “information” sharing.

Also essential is the ability to differentiate legitimate viewpoints from pure nonsense. (“Nonsense” would be any argument for the existence of chemtrails, for example.) A “legitimate” viewpoint always requires two things: clear logic and reliable sources. This is an incredibly low bar, but people, it seems, are often inclined to stoop much lower.

As a disclaimer, I buy a lot of organic food. But not because I think it is safer or healthier. I am much more inclined to buy LOCAL, which has a greater positive impact than organic and often tastes better, too, though I am fortunate enough to live in an area where much of the local is organic, if that is what I am looking for. But I have also talked with people who source organic for their products about why sometimes they specifically choose non-organic, not the least reason being that it is often ethically superior and more environmentally friendly NOT to be organic. Organizations like the EWG (Environmental Working Group) tend to only tell a distorted part of the story, and they certainly present data from a heavily skewed perspective (we expect this from corporate mouthpieces for Big Agriculture, and the EWG is no different — it is just a corporate propaganda arm for the organic foods industry).

But, like I said, if you can, let go of your confirmation bias. Assume that what you “feel” isn’t necessarily true. Assume that you are wrong, or at least only partially right, and that maybe you will find something to fill in the blanks and help you arrive at a reasonable conclusion. It’s good practice. We all need it. Only an exercised skill stays sharp and critical thinking is no different.

Read this article by Steven Savage and feel free to come back here and comment.

Then go get something fresh to eat.

My Story: Lung Cancer and Chemo and a Changed Life

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

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

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