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.
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→
I just put about two weeks’ worth of coffee into my body, so please consider that as you read these proposed guidelines for political postings on social media.
I decided to put these down because I have noticed so many friends falling off toward these two camps: those who are tuning out completely due to political news fatigue and those who are spun up into a frenzy of posting and reposting and forwarding and generally being outraged all the time (or at least every fifteen minutes between the odd stress-reducing cute animal pic or positivity meme).
The fact is, neither approach is helpful, and probably not healthy, either. We should all remain engaged, after all, or at least aware of what is going on around us. But we should not get lost in the process, nor should we be a part of the system of misinformation that has plagued our national politics for a long, long time. (That’s right, it is almost a national treasure, this “fake news” thing, and it goes right back to the beginning of our country’s history. That it appears to have reached some new apex in the past year is something of a natural progression, albeit a sad one. The challenge now is for the media to really keep it in check as it had done, more or less, for the past 120-ish years since the Hearst-induced Spanish-American War.)
Staring at my budget with blurred eyes and a brain addled by a host of fun chemicals, I have to pinch myself and remind myself there are reasons that I chose the long game; there are reasons I passed over GoFundMe or GiveForward or any of the other single-goal fundraising websites my friends have used wisely to bridge specific financial gaps. I’ve seen those sites work super effectively, raising $3,000 or more in less than a week while targeting figures high enough to cover a host of potential costs ahead. For those friends, who would be “out of the woods” in a few months or so, where all their resources will be expended in a concentrated time, I think the outreach and the community reciprocity is amazing and a great testament to compassion within our social groups. But I’m not hard-wired that way, and my condition is not so neatly tied up in a closed time-frame.
Longer stretch, earning smaller frequent support goals
At this point, though it could change, I am on this merry-go-round every three weeks until I die — preferably quite a few years from now. And while I am still riding my chosen horse (a big, jet-black unicorn with a dangerously sharp silver horn, if you must know), I have a lot that I want to accomplish. I can’t manage a job for more than an hour or two most mornings, so I haven’t been traditionally employed for over two years. And yet, I have so much work to do! Like my book on living well with advanced cancer, getting on with life in spite of new limitations and finding the very best of ourselves along theway. Continue reading Support My Site in September and get My Book Free!→
When I was diagnosed with metastatic, inoperable Stage 4 Lung Cancer, it wasn’t long before people were suggesting that I set up a GoFundMe page or use a similar service like YouCaring that would allow friends, family and even total strangers to donate money that would offset my soon to be staggering expenses. My first thought was, “wow, someone else can pay my bills! Score!” I knew about these sites — I had even donated to a few families through them, just like I had supported projects on Kickstarter and IndieGoGo, et. al. — but it had never occurred to me that I might one day be in a position where I would need to set one up. After all, we have good insurance, my wife has a steady job and I should still be able to work at least part time — that is what had run through my head — so this was a storm I expected to weather.
At first, things looked promising. Thanks to the Affordable Care Act, our family’s insurance costs actually came down. We were no longer subsidizing larger families (yes, I understand that families with more children may have seen an increase in premiums because many old policies used to have “family” rates that did not count the number of insured) and we also now had two “safety nets” built into our coverage: a potentially manageable annual cap on medical spending and the knowledge that I could not be dropped or denied coverage because of my condition. Had I been diagnosed a couple of years earlier, this would have been a very different story and we would, with some level of certainty, have lost our home by now or I would be getting treated through some other means entirely, maybe even be dead, or some combination of those options. Continue reading The High (Financial) Cost of Cancer and Why I Am Not Setting Up A GoFundMe Page→
I don’t normally write about guns, but soon it will be gun violence awareness day, so it seems appropriate to throw my two cents in. After all, I like shooting guns, and I like talking about the law. Plus, you know, I have a terminal cancer diagnosis, so it just kind of makes sense.
I recently read two similar news stories about a pair of women who were killed mere days apart: one was deliberately shot by a stranger after leaving a rural vacation spot, and another was shot in the back when her toddler found a gun in the car while they were driving. Pure coincidence that both of those happened close together in Wisconsin, a state I used to live just over the border from, and happened within a week of each other with two mothers being shot and killed while driving with their children in the car. Otherwise, one was a presumably intentional (if random) murder by a horrible person, the other a very random (and presumably inadvertent) act by an innocent.
I’d love to say that the random shooting of mothers by their small children was a complete outlier, but it isn’t. Sadly, this sort of thing happens far too frequently, even among responsible gun-owners and pro-gun advocates — even while they are driving. Of course, not all toddlers who come across guns shoot their mothers. Sometimes, and I find this part deeply, deeply sad, they simply shoot themselves because a loaded gun was within reach. (For those of you who did not or could not click that last link, it details four cases where toddlers shot and killed themselves during the same week last month, in addition to five non-fatal accidental shootings by minors.)
I’ll admit that there are some days when I feel like stuff is pretty bad. As with most people, I imagine, it can be easy to focus on how stressed out I am over finances, health issues, car trouble, marital concerns, whatever it is that is going on with my kid, deadlines on projects I don’t really want to be doing, deadlines on projects I reallydon’t want to be doing, some bullshit, that other thing, whatever… But before I go moping off into my self-aggrandized pit of misery, something usually stops me. More and more often in recent years, it has been essentially the same thing: the reminder, through everyday tragedies experienced by people I care about, that life is fragile, tenuous and entirely worth not wasting on feeling sorry for myself.
Tragedy teaches us
As much as these are lessons I would rather not have learned, it is an inescapable fact that every tragic occurrence teaches something. The lesson might seem small, even devastatingly pointless, but that is part of the theme; the overarching message life gives us is that we are all relatively inconsequential, except to each other. Our value is created by our contribution, our loss felt more deeply for a future deprived.
More than that, however, life teaches us that we — any one of us, at any time — can simply be removed from the social equation. That includes everyone we love, everything we hold dear. Our closest friends. Our parents. Our children.
There are lots of practical causes for things that turn tragic. Some of these we can do something about. Better gun regulations, better mental health services, better education. Sometimes we just get lucky and hit the brakes while turning the wheel at precisely the right moment. Continue reading Everyday Tragedy→
The holiday season is upon us. Traditionally this is a time for reflection on our values, both our personal values and those shared by society at large. We are also in the midst of a heated political campaign season, made divisive largely through a fearful shift throughout our culture. Because these holidays, pretty universally across religious boundaries, are focused on peace, it seems like a good time to consider some of the foundational concepts that have created the divisiveness we are experiencing. By addressing some of these, perhaps the peace we aspire to will be easier to grasp for all of us.
The topics of gun control, national security and terrorism, taxes, healthcare and climate change are issues we all agree are important to our society. Ideological divides often prevent productive conversations on these issues, largely because we, as a society, are quite uninformed about the facts underlying each issue. And our politicians frequently do not help this situation, preferring to fan the fires of discontent rather than address issues in an open and honest fashion. We, however, as cognizant and inquisitive humans, have the ability to sidestep the easy rhetoric and parroting of sound bytes in order to debate issues in a civil manner not currently reflected by many high-profile politicians and certainly not reflected by most pundits in the media. Continue reading Truth, Peace and Holiday Values→
Aside from my ever diminishing veins, the infusions during maintenance continue to be easy and relaxing. I guess I am lucky in that way — I know people who have different cocktails that they have various reactions to, from rash to fever to nausea on one end and flat out groggy sleep on the other. During these Alimta cycles, I am in and out fairly quickly and my biggest complaint is not having enough time here with the heated massage chair and my morning coffee to, uh, get any real work done…
Two infusions ago this chemo drug appeared to really mess with my digestive system, but it cleared up just in time for my scheduled CT scan and did not recur with the following round. The assumption now is that I simply caught a stomach bug that lingered for a couple weeks. The whole repressed immunity thing has been on my mind lately, and not just because what probably should have been a 24 hour virus took me 14 times longer to purge from my system.
Although the ensuing three weeks were relatively symptom-free (steroids make me irritable, mess up my sleep for three or four days and make me an emotional raw nerve; the chemotherapy wreaks havoc with my joyous time travel into the land of teenage acne, but even these things seemed to lessen somewhat), the issue of immunity and, more specifically herd immunity, was thrust back front and center when we brought a new kitten home from the pound. Continue reading The Chemo Diaries: More Summer Fun→
Please note, this is Part One of a series. Click here to jump to Part Two or follow the link at the end of this post. Part Two contains some very important information that greatly expands upon some of what is raised here.
Somehow I managed to miss the name Candice-Marie Fox when I was going through earlier research on foods that are claimed to cure cancer, of which her pineapple diet ranks as one of the more ludicrous. Through the grapevine, I learned of this diet yesterday and immediately I wanted to find out if there was anything plausible about it. Certainly, pineapple is healthy to eat and it is often used for digestive issues due to its enzymatic activity, so I wanted to give it the benefit of the doubt. Of course, I did not expect that there would be an actual cure in there, but maybe I could ascertain some actual benefits to the diet that transcended my initial skepticism. I was excited about this possibility; less so about discovering one more person preparing to cash in on a faux cure.
A quick Google search brought up hundreds of articles online about how this woman, Candice-Marie Fox, a former model (always in the lead of the story), beat “Stage 3” or “Stage 4” (depending on the article) thyroid cancer by “ditching her husband” and eating a diet dominated by pineapple and other fruits. As is often the case in this sort of story, even as it is translated into multiple languages, the text is almost identical from web site to web site. And most of those articles can be traced back to a source in that British rag called the Daily Mail — not exactly a solid, investigative news source.
A few other “news” outlets picked the story up. It makes great click bait, after all. But fascinatingly, these actual news stories manage to get a whole bunch of facts wrong. Which is not surprising, as the former model herself seems to trip over her own facts many times, even in interviews on other web sites after her celebrity began to grow.