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.”
My mother had recently received news about five friends and relatives dying within a four-day period. It seemed really stacked up, and then she got a call that her last remaining uncle was going into hospice care. While it would be another couple of days until he died, the early warning essentially brought the total news to six in under a week. Granted, she is “of a certain age” at which it is expected that her peers and associates will be ending this existence at an increased rate, especially those markedly older than herself. It happens. It’s a part of life. And it isn’t talked about enough.
As a culture, death makes us squeamish. It’s hushed up, spoken of mainly with euphemisms and generally avoided for its awkwardness. Worse, it is often treated as an embarrassment. Oh, why did Grandad have to die so…inconveniently? Perhaps he should have just gone on vacation and disappeared… “I’m sorry for your loss,” they all say, pitying you for being unable to arrange a cleaner exit for the dearly departed. But death is messy, sometimes. Death brings hurt, upends the cozy lives of the living, leaves an overwhelming amount of loose ends.
But death is a natural part of life — one that cancer patients often have staring at them right over the proverbial shoulder. In February, I interviewed Michael March about his, as he put it, “Final Journey.” Michael is dying from throat cancer that migrated to his lungs, after eight years of dealing with various cancer issues (including periods of remission). Our conversation ran the gamut, from the lack of education that people have in talking about death to the spiritual comfort some seek during their period of decline. Michael also opened up about the fear of suffering that still remains after having made peace with the idea of dying. Continue reading Death, Death and More Death, Naturally→
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.)
I was going to write about working without wearing any pants, and how pantsless careers are sort of ideal, but instead I am going to offer some thoughts on death and dying.
Most of my mornings begin like this: the low-impact sport of serving up espresso drinks at my daughter’s school followed by a cool down period of errands on the way home. Sometimes, since this is Los Angeles and there is always a bit of traffic to contend with, I have time for a phone conversation or to catch up on my quota of NPR. The ride home also gives me time to ruminate on important issues and subjects for my blog. Sometimes a conversation sparks a new thought process, twists the direction I had planned on going or otherwise derails what would have been a perfectly good fluff piece. By way of example, I recently conversed with my mother about my father’s final days, thus running the train of intention for this post completely off the rails. Continue reading The End of Life and How to Die→
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!→
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 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 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→
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 was skulking around the house last week, ruminating on just how bad I smelled. My wife was getting annoyed with me, insisting that I did not smell any differently; it was a hot, stagnant summer day and I was sweating (I felt) profusely. My chemo treatment was beginning to purge from my system and it seemed to me that as I would walk around a corner or even just turn my head, I would get a wiff of something nasty, putrid, sour. And I couldn’t shake it — that smell was just plain bad.
But it couldn’t be identified, or even located. And I was the only one smelling it.
Then I started to take stock of all my symptoms, which I do now and then as both a way of monitoring my body and keeping a sense of humor about the process. Because it can be pretty gross. Let’s face it, no one likes to think of themselves covered in puss-filled sores, hobbling about on swollen feet and wafting fetid breezes from God knows where throughout the room. Continue reading Perspective: One of the Greatest Gifts of a Cancer Diagnosis→