Tag Archives: Blogs

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

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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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

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

Longer Lasting Buzz, Lower Cost

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 DavidAvocadoWolfe 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.

Cheap wisdom on the label of a tea bag
More meaninglessness from America’s most trusted source of wisdom.

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.

Thanks for signing up! It’s probably the best decision you will have made today. Plus, unlike a scalding-hot cup of McCoffee, it doesn’t burn when you spurt it out of your nose.

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.

By supporting me, you can be a part of this. I can’t do it alone, but together we can make a significant difference in the way society approaches the many issues surrounding cancer, from awareness and education to patient-caregiver relationships, from funding research to advocating for better care. I believe it’s a worthwhile mission. I hope that you do, too.


If this post resonates with you, please consider supporting my work through a monthly subscription to my feed on Patreon, or a one-time donation through PayPal. Follow me on TwitterFacebook, Tumbler and many other fancy social sites or apps. Please share my posts to groups you are involved with on Reddit or Google+ or anywhere else that you feel it will help or enlighten or inspire another reader. (Sharing buttons are below the post!)

Thank you!

Lung Cancer Stigma and the Mainstream Press

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.

Read Lisa’s response here: http://lisa.ericgoldman.org/lung-cancer-facts/call-to-action-stop-promoting-lung-cancer-stigma-in-the-media

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.

Put that in your pipe and smoke it.

Michael’s Final March, Honoring the Legacy of a Good Man

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.

Michael’s Finale

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.

Mike

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.


If this post resonates with you, please consider supporting my work through a monthly subscription to my feed on Patreon, or a one-time donation through PayPal. Follow me on TwitterFacebook, Tumbler and many other fancy social sites or apps. Please share my posts to groups you are involved with on Reddit or Google+ or anywhere else that you feel it will help or enlighten or inspire another reader. (Sharing buttons are below the post!)

Thank you!

The Cancer Sufferer’s Wife

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