Through the wonder that is Social Media, I’ve connected to a wide range of people with their own personal cancer stories. As an extension to this blog, and as part of the research for both a broader understanding of the treatment options out there in the big, wide world, and the book I have been slowly developing to help guide future patients and caregivers through this often difficult and confusing process, I have been collecting interviews from a growing pool of diverse perspectives. Most of these interviews end up in my Patreon feed, where my podcast/video blog has its official home.
One of my recent acquaintances was the wonderful Lizz, who writes a lively blog called The Drop Off, which recently acquired the subtitle of “TRAVERSING THE INCURABLE, HELP AND HUMOUR FROM A CANCER SUFFERS WIFE.”
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.)
December 2014 marked the beginning of my chemotherapy, and two full years are now complete. This already puts me well beyond the “statistical expectation” for continuing to kick around, allowing me to enjoy another holiday season with my family and, for better or worse, getting me closer to my goal of actually going back to work full-time at some point in the (hopefully not too distant) future. A third year on chemotherapy may have seemed like a remote option at one point, something that was a distant hope not to be taken for granted, but now is an accepted part of my ongoing plan, the “new normal” that has been often talked about, what I have simply become quite used to in my daily existence.
So I take a moment to sit in my gratitude for what modern medical science has afforded me. As I write this, I am one day past my infusion, feeling only moderately tired because I woke at 3:30am and was unable to get back to sleep due to the way my steroids get my brain spinning in the night. Ironically, that same effect does not seem to occur during the day, when my mental capacities tend more toward fatigue and fog as the hours progress. Chalk that incongruity up to sleep deprivation, I suppose. The good news is that the steroids will have mostly worn off by tonight and, with any luck, I’ll be back to sleeping — or at least being able to go back to sleep — mostly through the night.
A month or two ago, I had a discussion with my oncologist about how I felt fewer side effects from the chemo, as though it had become progressively easier for me to tolerate over the past year, and especially over recent months. It gave him pause because, he informed me, the body does not generally “learn” to process the chemotherapy drugs more efficiently and patients do not build up a tolerance to the chemicals. If that were happening, for whatever reason, it might indicate that the drugs would no longer work due to being processed out of the system too rapidly. My most recent scan, taken last month, clearly indicated that the chemotherapy is still working the same that it had been — so obviously the infusions are effective at doing what they are supposed to be doing. The observation that I am left with, then, is that most likely I am simply used to dealing with the symptoms to a greater degree. Drilling down a bit more, however, there have been a few changes made in my routine after the infusion, specifically trying to be more active even on my more difficult days. My oncologist confirmed that this approach was most likely responsible for how I am “recovering more quickly” than I had been earlier in my treatment. Continue reading The Chemo Diaries: Year 3 Begins!→
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’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 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→
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.
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?
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→
In conversation with my mother, we began talking, as we often do, about politics. She related to me a story about how at a dinner party recently the topic of Ted Cruz came up and how he was receiving support from some of the more conservative members of the dinner party. One of the things that they raised as a positive issue was his opposition to gay marriage, in spite of the fact that, apparently, there were several gay or lesbian friends at this party. That alone seemed pretty uncool, but tact isn’t the point here. My mother’s response was that it isn’t the place of the government to police lifestyle options or the choice of homosexuals to publicly live that way. This is where I put the breaks on the conversation. Lifestyle options and choice are not matters that truly, empirically figure into the equation of whether homosexual, transgender or bisexual individuals are deserving of the same rights and privileges of their sexually straight counterparts, by which I mean fellow citizens. These words are linguistic tools that actually hamper the progress of our understanding by being misleading and, ultimately serve to enforce the stereotypes that the Far Right uses to suppress rights of individuals. As long as the narrative remains unchanged, progress does not occur. Continue reading Changing the Narrative Through Language→
Christmas is quickly coming upon us — at least those of us who celebrate the holiday. True believers, and by that I do not necessarily mean believers in Truth, will have us know that this is the time when we celebrate the birth of their favorite martyr, Jesus Christ. They will tell you that the focus of this holiday is meant to be upon the deeds and messages of the Christ, and they will occasionally complain about the commercialized nature of the holiday. On that last point, I agree with them wholeheartedly. Too many people seem to believe that Christmas is about celebrating excess consumerism, branded marketing and petty indulgences. Yet the real meaning of the holiday isn’t exactly either of those extremes. Continue reading The True Meaning of Christmas, or Don’t Let Religion Ruin the Holidays→