Tag Archives: positive approach

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

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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 →

Chemo and I Had a Pretty Good Run

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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

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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

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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

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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

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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

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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

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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.

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 Twitter, Facebook, 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

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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.

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

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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 Twitter, Facebook, 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!