TMI, Decontextualized and Uncurated
There’s no doubt about it: we live in an era definable by access to information about just about anything, from just about anywhere, to just about anyone.
This can be a good thing. I was able to conduct research for a dissertation on a relatively obscure topic—the 1904 World’s Fair in St. Louis—almost entirely from home. Resources that my university’s excellent library didn’t have and wouldn’t have been able to acquire were available to me via laptop. I found a wealth of primary materials—photos and newspapers from the turn of the 20th century—as well as secondary scholarly articles. I completed that dissertation almost ten years ago. In the interim, the internet has exploded in its offerings.
Because of a lack of curation, however, there are also downsides to the technological advances in information age. One well-publicized complication is the internet’s enablement of social media. Social media has its benefits: it enables the sharing of family news and photos of cats (both of which I’ve indulged in), but it also enables the sharing of politically-driven misinformation. It allows planning for social activism to expand social justice, but it also facilitates recruitment efforts for overthrowing governments. It turns out that bonding can occur as easily through sharing QAnon conspiracy theories and setting up the logistics of coups as it can through wedding anniversary announcements and dog videos.
The drawback I’m thinking about at the moment, though, is more personal.
Three weeks ago (although it seems much longer), I learned that the cancer I had hoped had been exterminated through surgery and chemo in 2020 is still with me. I was anxious for the results of the biopsy I’d had the previous week. Regrettably, I found the pathology report over that weekend. Yes, my fault—I sought it out. It was a temptation I was almost powerless to resist. Had my tumor been benign, the report would have made me giddy. But it was not a great way to discover that my cancer had metastasized. Is there a good way to make that discovery? Not really, I suppose. And yet I suspect there are better ways, such as being informed by an oncologist who knows me, and who can provide context, clarification, and a measure of human kindness.
My bad. I chose to access the report online. I was eager to put my mind at ease, to assure myself and Dyke that the tumor was benign. Unfortunately, that’s not what happened.
Not only did I have to deal with this information without benefit of my oncologist, but I also had to tell Dyke. Not telling him would have felt like a betrayal, a secret I was keeping from him. So I, still lacking context and clarification, did tell him. It was a traumatic weekend for both of us.
The trauma was caused by more than the diagnosis. The internet world proved to be a virtual Pandora’s box. Every woe, every anguish of every negative possibility, opened before us and hammered us like a blow. To say that a lot of internet material lacks sensitivity is like saying that the sun lacks icecaps. Not only are there myriad articles that present unbuffered scientific realities, but there seems to be a cadre of alarmist cancer buffs who traffic and revel in misery, whether their own or that of people they have known or have somehow heard of. While it’s true that some websites offer a degree of hope and encouragement, broadly speaking the landscape is bleak.
I talked to my oncologist several days later. He is a straight-shooter, and yet he was able to offer encouragement and the assurance that my cancer, despite recurrence, can still be cured or managed. So my situation isn’t as dismal as the internet (at large) suggested.
My biopsied tissue had already been conveyed to Precision Genomics, a team of specialists that is analyzing my particular cancer cells to identify their specific genetic mutations. The information they are gathering will help my oncologist determine the best course of treatment for my particular case (unlike the internet’s undifferentiated case information available to the unwary). The drugs I will take will be more targeted, and therefore hopefully less systemically damaging and more effective, than my first round of chemo. Fortunately for me and many others, genomic cancer research has greatly expanded therapeutic options; the resultant knowledge is revolutionizing the practice of oncology with every day that passes.
So while there are no guarantees (when are there ever?), I’m hopeful. That I’m harboring a malignant tumor on one of my adrenal glands is disquieting, of course (how stubbornly resistant to reality would I be if I were unperturbed?), but not dispiriting. The topography of my specific cells differs from the landscape painted by indiscriminate internet posts. I’m luckier than many people who compose the losing side of the statistics. I have many advantages—access to excellent health care with first-rate medical professionals; a lack of co-morbidities, and relative youth, compared to many people whose cancer treatment is unsuccessful; adequate financial resources; and incomparable emotional support from family, friends, and an exceptionally loving husband. Plus, science is definitely on my side.
There are things I’m already doing that will optimize whatever treatment I undergo. I’m enjoying every day. I’m eating a clean diet, getting sufficient exercise, and practicing stress management.
And one key to stress management is ignoring the unhelpful, pessimistic forecasts and tales of doom posted across the internet. As my primary care doctor once said, the internet is where you go to learn you’re going to die. (A hundred times over, in a hundred different ways.)
There’s no doubt about it: we live in an era definable by access to information about just about anything, from just about anywhere, to just about anyone.
This can be a good thing. I was able to conduct research for a dissertation on a relatively obscure topic—the 1904 World’s Fair in St. Louis—almost entirely from home. Resources that my university’s excellent library didn’t have and wouldn’t have been able to acquire were available to me via laptop. I found a wealth of primary materials—photos and newspapers from the turn of the 20th century—as well as secondary scholarly articles. I completed that dissertation almost ten years ago. In the interim, the internet has exploded in its offerings.
Because of a lack of curation, however, there are also downsides to the technological advances in information age. One well-publicized complication is the internet’s enablement of social media. Social media has its benefits: it enables the sharing of family news and photos of cats (both of which I’ve indulged in), but it also enables the sharing of politically-driven misinformation. It allows planning for social activism to expand social justice, but it also facilitates recruitment efforts for overthrowing governments. It turns out that bonding can occur as easily through sharing QAnon conspiracy theories and setting up the logistics of coups as it can through wedding anniversary announcements and dog videos.
The drawback I’m thinking about at the moment, though, is more personal.
Three weeks ago (although it seems much longer), I learned that the cancer I had hoped had been exterminated through surgery and chemo in 2020 is still with me. I was anxious for the results of the biopsy I’d had the previous week. Regrettably, I found the pathology report over that weekend. Yes, my fault—I sought it out. It was a temptation I was almost powerless to resist. Had my tumor been benign, the report would have made me giddy. But it was not a great way to discover that my cancer had metastasized. Is there a good way to make that discovery? Not really, I suppose. And yet I suspect there are better ways, such as being informed by an oncologist who knows me, and who can provide context, clarification, and a measure of human kindness.
My bad. I chose to access the report online. I was eager to put my mind at ease, to assure myself and Dyke that the tumor was benign. Unfortunately, that’s not what happened. Instead, I discovered that it was malignant.
Not only did I have to deal with this information without benefit of my oncologist, but I also had to tell Dyke. Not telling him would have felt like a betrayal, a secret I was keeping from him. So I, still lacking context and clarification, did tell him. It was a traumatic weekend for both of us.
The trauma was caused by more than the diagnosis. The internet world proved to be a virtual Pandora’s box. Every woe, every anguish of every negative possibility, opened before us and hammered us like a blow. To say that a lot of internet material lacks sensitivity is like saying that the sun lacks icecaps. Not only are there myriad articles that present unbuffered scientific realities, but there seems to be a cadre of alarmist cancer buffs who traffic and revel in misery, whether their own or that of people they have known or have somehow heard of. While it’s true that some websites offer a degree of hope and encouragement, broadly speaking the landscape is bleak.
I talked to my oncologist several days later. He is a straight-shooter, and yet he was able to offer encouragement and the assurance that my cancer, despite recurrence, can still be cured or managed. So my situation isn’t as dismal as the internet (at large) suggested.
My biopsied tissue had already been conveyed to Precision Genomics, a team of specialists that is analyzing my particular cancer cells to identify their specific genetic mutations. The information they are gathering will help my oncologist determine the best course of treatment for my particular case (unlike the internet’s undifferentiated case information available to the unwary). The drugs I will take will be more targeted, and therefore hopefully less systemically damaging and more effective, than my first round of chemo. Fortunately for me and many others, genomic cancer research has greatly expanded therapeutic options; the resultant knowledge is revolutionizing the practice of oncology with every day that passes.
So while there are no guarantees (when are there ever?), I’m hopeful. That I’m harboring a malignant tumor on one of my adrenal glands is disquieting, of course (how stubbornly resistant to reality would I be if I were unperturbed?), but not dispiriting. The topography of my specific cells differs from the landscape painted by indiscriminate internet posts. I’m luckier than many people who compose the losing side of the statistics. I have many advantages—access to excellent health care with first-rate medical professionals; a lack of co-morbidities, and relative youth, compared to many people whose cancer treatment is unsuccessful; adequate financial resources; and incomparable emotional support from family, friends, and an exceptionally loving husband. Plus, science is definitely on my side.
There are things I’m already doing that will optimize whatever treatment I undergo. I’m enjoying every day. I’m eating a clean diet, getting sufficient exercise, and practicing stress management.
And one key to stress management is ignoring the unhelpful, pessimistic forecasts and tales of doom posted across the internet. As my primary care doctor once said, the internet is where you go to learn you’re going to die. A hundred times, in a hundred different ways.
I do recommend the baby goat videos, though.