Tag Archives: wellness

Parabens, Fear and Junk Science

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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 →

Clearing the Roof

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The past two weeks wore on me; at times, I felt like I could drown in the pool of stress I had been slowly sweating out of me, a thick quagmire created of my own internal angst that seemed to engulf me from all sides. I’ve drained that pool in the last couple of days after trying a little exercise I like to call Clearing the Roof. Because I realized that stress is a top-down issue, it was going to have to be dealt with right up there, on the roof, where all that clutter and debris had been sitting, decomposing into mucky, thick, unmanageable gunk. Some of it was fresh, identifiable, easily swept away. Some of it had been there for years and was entirely unrecognizable. A whole lot of it, it turned out, was just settled pollution, junk particles that had come to rest because nothing had ever washed them away. It had been a much longer time than I thought since I had done this kind of personal maintenance.

Good thing I had a tall ladder.

But first, some backstory: For years I have talked about the importance of letting go of stress. I have let it eat at me in the past while I absorbed it from other people like an emotional sponge and the effect is that it triggers very strange migraine effects that mess with the speech center in my brain, causes a blind spot that travels across my field of vision and has, on one particular occasion, caused a trans ischemic event that, for those unfamiliar with the term, is kind of like a small stroke during which I lost control of my body, hallucinated that the table full of Happy Hour beer and appetizers was bouncing around, tossing things at me, and then I could not make sentences that anyone (else) could understand for about twenty minutes while my left hand tried repeatedly to climb up my chest. Continue reading Clearing the Roof →

Wrist wrapped for chemotherapy infusion

Infusions With Friends

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There is room for a great social media app here, so officially I’m announcing “Infusions With Friends” — everyone needs a game to play while they’re stuck in treatment and when you begin to realize how many people are not only going through chemotherapy at the same time as you, but often having their treatment on the same day, it just makes sense that we ought to be able to hook up and make a game out of it. And if for whatever reason, one or another of us cannot join in the treatment fun as scheduled, it still is nice to have a way to feel inclusive and play along from home.

Chemotherapy infusion tube taped to wrist
The free hand was holding a smartphone and could have been playing Infusions With Friends!

When I got up this morning, I anticipated that two of my friends were likely to be “joining” me in chemo today — one from a a state to the north, one well to the east. It felt good, like there was some camaraderie there, full of mutual encouragement and good times, opportunities to share the view on Facebook or comment on how the mornings were spent with family before going in. And I usually find room for a few jokes around a “cocktail” theme or to comment on the need for better spa services. Sure, my material is starting to wear a little thin, which is all the more reason to get an appropriate app to market quickly. And the play at home feature would have been especially useful for me today, as I discovered that neither of my friends would be joining in from their respective clinics. One was simply a scheduling difference — she goes in tomorrow. The other had some issues with his bloodwork; last week when the same issue prevented his treatment, I thought he had simply lucked out with a week-long vacation from treatment, and I was secretly excited to get him on my schedule because I’m selfish and bored sometimes. So here I was this morning, luxuriously relaxing in my heated, vibrating lounge chair, feeling vaguely lonely in spite of the cheerful nurses and their needles. Continue reading Infusions With Friends →

Myth of the Wellness Warrior, Part 2: Supplements, Denial and the Birthday Problem

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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 →

The Chemo Diaries: The Worst Day

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With chemotherapy, there is one thing that is certain from cycle to cycle: there is always a dance between the predictable and the unpredictable. Which is to say, much of what a patient goes through can be anticipated, but there is always the possibility of a subtle or surprising change. We plan out our schedule as best we can based on previous experience, but sometimes — perhaps every time — we need to roll with how our bodies react.

Breakfast at my desk
Breakfast at my desk

I had my infusion on Monday (as is my preference). For the past year, it has been safe to say that Thursday (today) would be my “worst” day. I should be feeling the effects in my head and my gut right now, full force; I should be tired, irritable, woozy, even slightly sick to my stomach. I should be curled up on the couch or wanting very much to be there. But I’m eating a bagel at my desk and typing this and ruminating on going out for a burger. And I’m doing the household laundry, a whole week’s worth, but that’s another story.

My last chemo cycle was pretty close to normal, but I started feeling crappy a day early and finished feeling crappy a day early, all more or less. It improved that weekend, because I was more active and felt better by Saturday. I like that as a trend and hope that this weekend is quickly cleared up — especially because the weekend after my next infusion has a camping trip clearly written on the calendar. This is a precedent I can get behind. Yesterday, however, rather than having me feeling crappy a day early, I barely felt crappy at all. It is certainly enough to give me pause. But there may be a very obvious reason for why I’m feeling better (or at least less ill) this time around. Continue reading The Chemo Diaries: The Worst Day →

Talking About Life While Facing Death

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One of my more popular contributions to the Quora.com web site deals briefly with how we approach loss and watching a loved one die from cancer. This is a subset of one of the most important topics of my blog, the need to redefine the narrative of cancer. Stories that we hear and those we tell ourselves are very important in terms of how we approach and understand the world. For most of history, the narrative of cancer has been relayed in a fairly dreadful manner — and often rightfully so, because the story of the times was perhaps simply accurate. But the time we are living in now requires a reboot of that narrative, one with more optimism and hope and, more importantly than even that, a good, solid dose of actual science. Another thing that needs to be adjusted, I believe, is more of a societal approach to the empathy of death and dying and how that can be embraced as a natural, even welcome, component of life.

I am clearly not above the occasional inspirational bracelet.
I am clearly not above the occasional inspirational bracelet.

While this is a more complex issue than I can adequately address in this post, I am going to include a short answer I wrote on Quora about a year after my own diagnosis with lung cancer — at which time I had just about reached my “statistical” expectation for life expectancy with a Stage 4 diagnosis. You see, according to the abstract numbers you get through pretty much any Internet search on survival rates, Stage 4 lung cancer does not fair very well. If you believe the numbers, you’re just supposed to die. Quickly. So I did some “soul searching,” and came to terms with what dying might mean to me. Then I moved along because, for one thing, I know a little bit about reading statistics and it was clear that they did not apply to me. (My demographic, for one thing, was not properly represented, nor was the collection of treatments that had been introduced in the previous five to ten years, which is about how out of date most survival rate statistics are when you get them.) Besides, even if cancer was going to negatively impact my longevity, I still had a lot of living to do. And the plan remains to live long enough to die of something else. After all, there is no shortage of ways to exit this existence. The real question, ultimately, becomes not how or why we go, but what we do with our time here that matters. Continue reading Talking About Life While Facing Death →

A Day of Chemotherapy

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It’s late in the evening and the hiccups have begun just as I lay my head on the pillow. Aside from that nefarious turn of events, the predictions for the remainder of my day were fairly accurate in my video diary, as hastily assembled as it was this afternoon. Journey with me, if you are curious and have roughly 20 minutes to spare, to see just what it is like to go in for my tri-weekly chemotherapy infusion.

Infusion Time!

Yes, I look a little tired; I was. And yes, there may be some sound issues; I was using a new app on my phone and rushed the whole process, and per the last sentence, I was also tired. Still, the record stands, more or less, and you can see just the extent that chemo has worn me down and crushed my spirit over the past year and three months that it has dominated my social calendar. In the spirit of this blog, I have tried to remain honest and straightforward in my appraisal of how the chemotherapy process works. While the video is clearly edited for time, it still drags at times, just like my poor, poor feet… Maybe one day I will trim a few minutes off and spice it up with music and flashy cuts. For now, this is the story of my day, more or less like it really happened.

[Edit: the original video has been replaced by one that really ought to be better quality. Also, follow up videos for the week will be posted below, so this post really should be called “A Week of Chemotherapy.”]

Monday:

More videos follow.
Continue reading A Day of Chemotherapy →

Living in the Moment

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I have always had difficulty living in the moment. It’s something I have struggled with my entire life. It isn’t something with emotional roots so much as just being the way my brain is wired — there are both pluses and minuses to this — but there are certainly emotional ramifications. Ever since I was a child, I have taken in a lot of information from the peripheral, sometimes impacting the central focus of my attention. Often, I would simply drift away, trying to retain my connection to what was happening while being pulled somewhere else entirely. But I recognize the importance of the moment, of the experience of being there in life.

When I drift, it is not always a bad thing; in fact, I am often very invested in what is going on, but I begin extrapolating in my mind and that can take me somewhere totally disconnected from what is actually happening. The effect is an offshoot of the rich fantasy life I had from the beginning. In my earliest memories, I was already a storyteller and could lose myself for hours in imaginary worlds or alternate lives. While I remember slow days, it is hard to recall being bored in my youth. But it is easy to pull up memories of being distracted, antsy, eager to be somewhere else.

In grade school, I was not particularly academically challenged, but I was also not wholly invested in my lessons. In the middle of a math test, my mind would wander elsewhere; I would try to be attentive, but my note taking progressively betrayed me. By the time I was in college, my class notes were filled more with poetry and sketches than any transcriptions of my professors’ words. Those pages are a document of my tangential thinking, the intellectual wanderings typical of how I often experience the world, the slight disconnect to being directly in the “now.”

Continue reading Living in the Moment →

The Chemo Diaries: Year Two, Round Two

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Getting ready to fluff my pillow before the chemo drip begins.

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

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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 →

Death in Threes and the Power of Words

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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 →