Tag Archives: Cancer

Guns or Cancer, Which is Better?

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.)

And that is a clear example of what is wrong with current gun regulation. Continue reading Guns or Cancer, Which is Better?

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

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

Talking About Life While Facing Death

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

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

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

image
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

image

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

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

Other People’s Cancer Blogs

It’s true. I’m not the only person who writes about cancer in a blog. It turns out that these here InterWebs are full of conversations and observations and ramblings and rants and meditations and monologues galore, focused on all things cancer. And, while it may not be a shock that I enjoy reading some cancer blogs, the surprise is really how darn good many of them are. Now, because I have lung cancer, I tend to gravitate toward reading the experiences of others with the same condition. And I may be biased in thinking that lung cancer brings out the best writers. But I am going to throw it out there that, at the very least, what I am about to share is some very good work by some dedicated people with important stories worth reading. I’m not going to rank the best lung cancer blog or set up any sort of competition here. I just feel that these are other experiences from other people that I would like to share with you.

I’m targeting other writers with metastatic lung cancer, partly to show that I am not a complete outlier. While this disease is still killing an inordinately high number of people, the cancer blogs I’m linking here tell an uplifting, inspiring story, especially when taken as a collective whole.

The Cancer Blogs

Janet Freeman-Daily is an aerospace engineer turned lung cancer advocate who was diagnosed in 2011. She writes about Gratitude on her blog, Grey Connections, and her posts also appear on the useful website for Cure magazine. She also has a terrific list of other lung cancer blogs which is much more exhaustive and interesting than what I am including here, and it includes detail on each author’s age at the date of diagnosis along with the type of lung cancer. Continue reading Other People’s Cancer Blogs

How My First Year of Chemotherapy Changed My Christmas Wish for You

The holidays are upon us and I am sitting at my keyboard two days after my latest infusion, my brain awash in a heady mix of chemo drugs and residual steroids. I can feel the moisture in my nasal passages dissipating as it tends to do at this time, my eyes drying up along with them. Food doesn’t taste as profound and I gravitate toward sweeter options just to find them more palatable, or more bitter options because that bitterness is only intensified. But aside from a slight sleepiness that keeps threatening to overtake me, I’m actually feeling pretty good, very happy and more or less alert… And I’ve been thinking about this whole holiday thing since I was in the chair at the clinic, watching the drip come slowly down that long tube.

Snowman Believe
This snowman has some good advice at his fingertips.

I’m a big fan of Christmas. Always have been. Not the commercial side of it, so much, but that is because consumerism and gluttony always rub me the wrong way. And not the religious side of it, so much, because dogma rubs me the wrong way, too. But the spirit of Christmas, that I do love. The concepts of peace, unification, giving — and taking the time with family and friends to focus on the love, joy and small miracles of life — these are very good things, indeed.

Every year I try to look at these positive elements (that should be) exemplified by the holiday. I think it is important to contemplate the meaning of Christmas, even from a secular perspective. This time around, there is little doubt that my views and my wishes have been influenced by my treatment. Here is my Christmas wish for you. Continue reading How My First Year of Chemotherapy Changed My Christmas Wish for You

The Chemo Diaries: Year One Retrospective

It has been slightly over one year since my diagnosis, and I am in my twelfth month of chemotherapy infusions. I find it fitting that this timing coincides with Lung Cancer Awareness Month. To celebrate, or honor, or whatever you do for these types of anniversaries or milestones, I have decided to take a look at the previous year in pictures. This isn’t so much a vanity issue, though you will notice that the pictures are basically just of me, usually smiling and trying to look presentable; the greater point of the images is to watch the progression (or, occasionally, lack of it) in my appearance from infusion to infusion.

In November of 2014, I received my diagnosis after several months of feeling ill (for mostly unrelated issues) and having little or no energy or stamina. Ironically, when the testing and scanning began in earnest in September, I had begun to incrementally improve. Every time I was irradiated for a glance within, I left the imaging center feeling better. My breath had been quiet short in August and September, but by October I was noticing an improvement — a small improvement, but enough of one to give me the notion that I was “getting better” from whatever was ailing me. Still, I wasn’t in the best of shape, and I had been spending the previous months worrying progressively more about just what could be going on in my lungs. I had spent more time doing research on the Internet than I probably spent in the college library system during my entire four-year stretch. (Okay, not just probably; I did not take advantage of the old stacks the way I should have, and that remains one of my biggest regrets about those college years — funny the things we grow nostalgic for as we “mature.”)
Continue reading The Chemo Diaries: Year One Retrospective