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.
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!→
On a recent morning commute, I was stuck behind a car that I coveted. It was only for a moment before traffic split off and I chugged ahead in my aging vehicle, but it was enough time for my brain to process this thought: “well, if I was meant to have a car like that…” If only it was meant to be. I caught myself, teetering on the precipice of that trap, and yanked myself back before slipping all the way over the edge.
If only it was meant to be.
The notion that anything in our lives was meant to be is a dangerous concept. People use it to soothe their despair, to give meaning to tragedy or otherwise cope in circumstances that they feel powerless over. But it is a notion that suggests that we should also give up, give in or otherwise simply accept that truly shitty things are meant for us, while other people are meant for luxury or power or even just a simple happiness of some sort that is uniquely theirs. It suggests that if we do not have that good stuff, we do not deserve it, but that whatever crap we are coated in is truly, divinely ours. Continue reading Meant To Be→
I was going to title this post “Why I Love Parabens.” I had been reading up on them lately for a number of reasons, mostly surrounding a largely unfounded controversy surrounding a type of lip balm my daughter had been using. In the case of the lip balm, the “paraben-free” product was being accused of harboring mold with the implication being that this was a manufacturing defect. Examination of the claims revealed, however, that the mold was most likely the result of misuse or poor storage of the product which, due to the lack of effective preservatives, would be expected to mold if it was exposed to moisture and kept in the dark. This does, however, beg the question as to why a lip balm, of all things, would be sold without effective preservatives to protect against mold.
The answer, of course, is the unwarranted vilification of parabens. The natural cosmetics industry, and perhaps more accurately the Environmental Working Group and other activist organizations have been disseminating information about parabens for over a decade now, describing how they are endocrine disruptors and probably cause cancer. And this is where we get to the point of where science is occluded by hype, to the detriment of the consumer, the patient, the regular person on the street…Continue reading Parabens, Fear and Junk Science→
I’ve heard a lot lately about fears that a conspiracy is being perpetrated by the pharmaceutical industry and the government to keep natural cancer cures (and natural or holistic care in general) away from patients. It makes for a dramatic story with lots of Hollywood appeal, but examining the accusations leads down a more insidious path. To get there and understand the full extent of the problem, we need to step back and look at a range of sub-industries within the healthcare umbrella, what they provide and how they intertwine. We also need to understand some basics about statistics and probability that will clarify what some of the facts surrounding this conspiracy really mean. [And when you are done reading this, please continue on with the next chapter in this ongoing series.]
Supplementing the Truth
To begin with, let’s examine the hugely profitable supplements industry (mentioned in Forbes’ SportsMoney column as one of the fastest growing industries in the world). “Natural health” advocates and self-proclaimed gurus often have their own supplement brands which they sell as part of treatment plans pushed on their web sites, or they have affiliate arrangements with a brand that they offer as being somehow superior to other brands. The supplement industry has grown from the notion that manufactured (or synthetic) vitamins could be used to supplement areas in the diet where a person was not able to consume adequate quantities to be healthy. In an indirect way, it can be traced back hundreds of years to the discovery that citrus fruit — particularly lemons — could prevent sailors from getting scurvy. It turned out that scurvy was a disease caused by a Vitamin C deficiency. By “supplementing” this vitamin, the disease could be avoided. Continue reading Myth of the Wellness Warrior, Part 2: Supplements, Denial and the Birthday Problem→
I have a daughter and I care what she reads. From her earliest days, books have been an important part of her life. She’s ten now and I still read to her regularly, though she reads voraciously on her own (and far more than I ever was able as a child, since she reads like lightning when left to her own device-free devices). That kid can devour stories, though lately has taken to being very choosy with her time. If a book doesn’t hook her, it goes back to the library unfinished. She wants to be sucked in; once she is engaged she absolutely must finish. Because it matters, I am always concerned with the messages in the stories she finds most enticing.
When she chooses her books, her mother and I try to be aware of the content and whether there is an underlying theme of “what’s wrong with me?” running through the pages. More and more, it seems easy to identify this theme almost as its own genre in children’s and specifically girls’ literature. The seeds of necessary therapy are sown implicitly between the lines as books for these young readers guide them to feeling less than adequate, training them for a life of unnecessarily pursuing products to fix themselves. This is a predictable byproduct of corporate America, where publishing is largely controlled by conglomerates that feed revenue streams in any way possible. Branding and downstream profits are the backbone of our consumer culture. But feeding this beast is optional. Continue reading Girls Literature and the Culture of What’s Wrong With Me?→
The Chemo has been going pretty well since my first real extended break. By extended, I really only mean two weeks off from the usual cycle. The first infusion after the vacation may have left me a bit more tired than expected, but I wasn’t exactly super well-rested after a week of extra stairs and cross-country travel. It will be interesting to see how this round goes.
Chemo and Gratitude
This isn’t about still having my hair, or not throwing up all the time. Maybe it’s a little about those things. But I have been quite fortunate with regard to all aspects of my treatment and to all the people involved with the process from initial decision making to treatment to support. Nowhere along the way was I met with an adversarial situation. (Huntington Memorial and my Nurse Navigator, the illustrious Christine, get special credit for that, having gone to bat with my HMO so that I would not have to. And the whole staff with my oncologist at Keck works diligently to ensure that I am shielded from most HMO related nonsense, as well.) Continue reading The Chemo Diaries: Year Two, Round Two→
The common saying is that “they come in threes.” We’re talking about celebrity deaths, of course, and although this is typically the sort of nonsense that can be justified simply by shifting the period of inclusion so it always appears to be accurate, there is something eerily unique about this past week. Within nine days, we have had three prominent people of the same age whose deaths are blamed on cancer.
First, we had Ellen Stovall, age 69 and president of the National Coalition for Cancer Survivorship. Technically, she died from complications related to cardiac disease, but the cause of her heart trouble is traced back to treatments she underwent 45 years ago for Hodgkin’s lymphoma. According to her obituary in the New York Times, she had a recurrence of the lymphoma in the 80s and then also discovered that she had breast cancer — about this time she also discovered a pamphlet from the organization she would later be president of, which introduced her to the term “survivor” as a replacement for the word that had been commonly used to describe cancer patients: victim. This subtle adjustment of language helped to give her drive and focus and to become a force in the next wave of cancer awareness. She died on January 5th.
Next came the news on January 10th that David Jones, better known as David Bowie, had died after an 18 month “battle” with an undisclosed cancer just two days after his 69th birthday. While his family declined to offer details, it was reported by the New York Times that the director of Lazarus, Bowie’s Broadway collaboration, mentioned liver cancer in an interview with Danish media. Whether this meant the cancer originated in the liver or had merely settled in that organ is not clear, keeping in tune with the varied enigmatic personas the performer was known for. However, not knowing the type of cancer adds not just to the mystique of David Bowie, but the general fear and uncertainty that the word “cancer” conjures on its own.Continue reading Death in Threes and the Power of Words→
I was reading a friend’s blog post a while back, a personal rant she shot off about tolerance (especially among the particular Christian community of which she considers herself a part) in response to Bruce Jenner’s transition to Caitlyn. I had not realized (at that time) that this was a big deal, or even anything particularly new to discuss, but then I have been living in Los Angeles for about 30 years and this sort of thing is long past novel for me. I know that there are plenty of bigots and idiots in Southern California, but I’ve been fortunate enough to surround myself with, if not always like-minded, at least open-minded individuals for most of my time here. I am also fairly confident that even my oldest friends from rural Illinois who remain entrenched in “Middle America” are soundly rooted in kindness and tolerance. In my well-lived-in fantasy world, it often seems that most narrow-minded people exist strictly as online trolls, waiting to lob their tirades at rational science or reasonably centrist political viewpoints. Then, every now and again, I wake up and venture outside.
For a long time, I’ve been repeating my belief that much of what is wrong with our particular society is rooted in a lack of Critical Thinking Skills. And I believe that tolerance, in general, is indicative of that same problem. If we, as a culture, were to exercise better critical thinking, then bigotry of all types should readily dissipate. After all, bigotry stems from a certain dogmatic thought process which is destroyed by self-examination and a broader understanding of how things actually work and fit together. Therefore, any thoughtful group of people ought to find that their differences make them stronger and unite them better, unless those differences are Continue reading Vanity→
A person I know quite well — and with whom I recently have had several lengthy conversations about my current state of affairs — offered an interesting appraisal of her understanding of my health and well-being to my wife. She said, rather unceremoniously, that she had expected me to be dying. In fact, she seemed quite surprised (and possibly a bit put off) by how healthy I appeared. Turns out, I have news for her:
In fact, here I am, looking quite well (and dare I say “dashing”) in my new progressive lenses picked up today to aid my aging eyes. True, after over 15 years of having a stable prescription, the chemotherapy seems to have begun affecting my vision ever so slightly, at least in the first couple of feet. So this minor side effect has required me to jump straight into trifocal territory. Aside from the minor “swimmy” effect of turning my head side to side while looking through the “mid-range” section, these are actually quite amazing. But that isn’t really what this entry is about, so I’m going to move along.
The thing that most startled me, and which I actually took some offense at, was the notion that a person who is not stupid managed to ignore virtually everything that she had been told about my condition, the state of cancer research and, perhaps most importantly, why statistics do not tell a whole story, or often even a remotely correct one. And what did this person rely upon to make up her mind about what I was going through and my prognosis for continuing life?