As a lung cancer patient, I certainly receive a fair amount of emotional support. Maybe some of it is more well-intentioned than helpful, maybe sometimes I don’t get what I really need, but I know it is there and I am ever-grateful for it. But as a patient, it is easy to find support in many ways, through friends and family, through community, through blogs and online forums and in-person support groups. Patients are obvious recipients of support, people who clearly need it for what we are going through. But there is another class of individual who carries an equal or higher burden and is consistently overlooked in the need for support: the caregiver. Continue reading Support Where It Is Due
Obviously, a certain theme has been on my mind recently. It is one, no doubt, that I will continue to explore.
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It has been over two weeks since I began taking my new drug, afatinib. Over two weeks of feeling good, feeling like the chemo has been thoroughly flushed from my system even as I have diligently taken these new pills, feeling the best that I have in three years. I have been keeping a journal this time, chronicling how my body is responding each day, trying to pave the way for a better understanding of how to live with this new treatment. For the first week, anyway, it almost seemed like it was going to be too easy.
There are two weeks of video updates on my Patreon feed, talking about how great I feel and wondering how bad the side effects will be once they really kick in. I had been prepped by my oncologist that it was very likely that I would experience worse side effects than I had with the chemo I had been taking. This was based on how well I tolerated pemetrexed, the chemotherapy drug that had kept my cancer at bay for so long, but not so much on patients in general having a particularly tough time on afatinib. Which is not to suggest that I expected a walk in the proverbial park with this new drug.
Still, the first week was amazing. It was almost like I was taking nothing at all. Sure, there was some digestive stuff going on, but nothing outside of the realm of what I would have been used to in a previous life if I decided to live off of bean burritos for a few weeks. And I love a good burrito, so it would be worth it. But by day eight, I realized that the side-effects of the drug were presenting themselves quite visibly. Continue reading Spoiler Alert: Side-Effects Show Up
Some time back, I wrote about the importance of clearing the roof of debris. Like many things I write, it was intended as a metaphor, illustrated by happenstance with imagery of me clearing actual debris off my actual roof. Because sometimes, in spite of life’s special curve balls, we have to muster the energy and resolve to do stuff that simply needs to be done. And in so doing, perhaps we can find joy or a sense of gratification, and maybe even extend that process to a more metaphysical level, using it as a tool for release or letting go, or at the very least, we can check one more thing off the ever-growing list and move along to the next item.
Which, in this case, is a roof sealant.
Last winter, we enjoyed the heaviest amount of rainfall that Los Angeles has seen in years. Although not enough to entirely counter the trend of drought that has plagued the region, it did refill reservoirs and contribute to record snowpack in the mountains, dramatically relieving the strain on water reserves. However, this exceptional amount of rain also managed to seep through the apparent (but not obvious) cracks in our roof, puckering the paint in our kitchen ceiling. While the roof remains structurally sound, the asphalt sheeting is showing its age and beginning to crack under the incessant heat of the sun.
When a minor leak from our water heater led to a small amount of construction in our kitchen, we ended up repainting the entire room and fixing the ceiling in the process. Of course, that will look fabulous up until the time when we have another multi-day deluge. Continue reading Sealing the Roof
Before I concluded my chemotherapy, I sat down with the pharmacist who had mixed my drugs for nearly three years and recorded our conversation for my erstwhile podcast, The Deep Breath. It offered a revealing look inside the process of administering chemo, as well as other drugs used to treat cancer patients.
I did not realize that I was one of the longest consistent patients currently receiving treatment at this facility. Although I was preparing to call chemo quits after slightly more than 2.5 years, I knew of at least one patient who had been on the same basic regimen as me for around seven years. But that had been before my time. As I settled in to interview my pharmacist, he revealed that he was not aware of any patient at the clinic who had been receiving chemotherapy as long as I had been since he started the job. I appreciated the special distinction, even though I had mixed feelings about it. Continue reading Inside a Chemo Clinic Phamacy
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
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
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
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.
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