Tag Archives: communication

Wrist wrapped for chemotherapy infusion

Infusions With Friends

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

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

Girls Literature and the Culture of What’s Wrong With Me?

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?

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

Negative Comments, Positive Response

I’ll admit that I was a little perplexed this morning when I received a pair of (presumably) unrelated negative responses on one of my older blog posts, The Myth of the Wellness Warrior. Although I wrote that post about eight months ago, it continues to bring in a fair amount of traffic, including about 150 views today that appear to be mostly sourced off of Facebook and a few Google searches. While I expected that piece to illicit some reactions, I felt that the information I presented spoke for itself fairly well, and irrefutably so. I only criticized claims that are demonstrably false and I included links to vetted sources to support my statements. Still, I am no stranger to quasi-anonymous Internet attacks.

Follow this link to www.justbadforyou.com/blog
Cat pics simply bring people together, creating order out of chaos, joining everyone in blissful unity.

For a long time, I moderated a political forum that had civility as one of its prime directives. My job, in no small part, was to ensure that conversations stayed focused and did not degenerate into name calling or worse. One way that we ensured this possibility was to remove anonymity as much as we could through a registration process. The other way was through constant moderation and guidance. Because of that experience, I had initially required specific site registration here in order for anyone to comment. The system in place, however, was not entirely functional and several people let me know that they could not log in to leave comments. At the behest of a friend, I relaxed the comment restrictions and readied myself for an onslaught of SPAM and Internet Trolls. Continue reading Negative Comments, Positive Response

Everyday Tragedy

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 really don’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

Drama-icon
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

Truth, Peace and Holiday Values

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

The Risks of Critical Thinking

I almost never reblog another writer’s work, but I think that this one is worth sharing with a wider audience (partly because I don’t have the time to write my own riff on the topic today). I have written many times about the importance of critical thinking, and I believe it is not being well taught in our schools much of the time. It seems to me that too many adults in these here United States are under-practiced in basic critical thinking skills, so it is difficult to merely fault the students or their teachers. This is a problem that should start and end at home, with school being a place to practice and develop an existing skill, rather than create one from scratch.

Anyway, for your reading pleasure, my friend Elena’s post on “The Risks of Critical Thinking…

 

December 15, 2015 by writingtimes

I recently read an article in which the author, a professor of science, deplored the pitfalls of teaching students critical thinking skills: eventually, the students begin to doubt everything, even the teacher’s knowledge and experiences. When I read the title of the article, my thoughts snapped out of “Mom in her PJs Drinking Coffee” to my alter ego, “Defender of Teaching Our Students Conscious Choices and Critical Thinking.”

I’m working on the name. But this persona is really tall, she wears super cool boots and can run really fast. In her boots, even. Not that she needs to run. She spends a lot of time standing in front of schools and ranting about how we teach our students in this country. Or don’t, as the case may be. She wears sharp fitted business suits and her hair always looks fabulous. Plus, her children are standing beside her in support and awe of her, not telling her “the hamburgers taste funny” or “you forgot to put money on my lunch card” or “by the way, the dog peed on the carpet awhile ago but it’s not my turn to clean it up.”

You see the difference.

The Defender wanted to write a rant-y response to this article on Facebook RIGHT. THEN. She’s rather impetuous. Instead, I advised that we actually read the entire article first, because that would be really funny, if we went and ranted about another author criticizing teaching critical thinking skills when we never actually read what was written.  Get it?

Read the rest of the post on its original page…

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