Back in 2002 when I got my first mammogram, blogging was new. Google had not yet acquired Blogger. Blogs were usually like diaries — more personal, like logs that you keep for yourself — just that you keep them on the web — in a word: weblogs. In fact I blogged — but I blogged privately, using blogging just like an online diary.
It was that process — my first mammogram and my subsequent surgical biopsy — that opened me up to public blogging. I blogged the whole experience, sharing pictures and anxieties — and relieving results — in a trail across the Internet that lives on today as scars live on my body. It’s been a profound experience, both to share something so scary and personal, and to tie together stories, search terms, and information with actual humans searching for information; perchance for solace.
What an evolution in the last decade or two. When I approached the date of my second biopsy, an ultrasound-guided core breast biopsy on a palpable lump in my left breast, I of course went to the Internet. (The biopsy was last Friday. I just got the results. My lump is benign tissue with stromal fibrosis. My breasts seem to always be doing something interesting, so we keep very alert about them, but I am of course awash in relief).
One big difference in the Internet is that nowadays it’s harder than ever to find personal stories — at least using conventional search engines. If you search for typical breast diagnostic terminology, you have to wade through pages of marketing materials and corporate communications before finding people’s blogs. It’s harder and harder to find a personal story from an actual person who has gone through any procedure, even while supposedly searching “blogs only.” I had to resort to the WordPress-specific blog search, and even then wade through results to find personal stories. It’s good news that more and more institutions themselves blog, but what a change from the days when “blog” meant a personal diary to being an official organ.
I know folksonomy is not always the best thing in medical self-diagnosis, and I’m fascinated by the reactions when I tell doctors and nurses that I go to the Internet and search for information before a procedure. Usually they react with some form of dismissiveness or disdain, and most recently I’ve wondered (without real cause) whether it centers around women relaying their experience — any experience — even if highly unscientific. There must be a whole body of official organs of medicine steeped in preventing alarm over “nothing.”
It’s true I found lots to fear on the Internet. But it’s also true that these things happen. When you’re told you need to get a biopsy, you can’t help but imagine you are already a person living with cancer — with or without the Internet. There are studies (of course, official studies — I found them on the Internet!) on levels of cortisol that back this up. The days stretch eternally till the procedure, then until the results (no matter how fast or efficient – for which I am incredibly grateful).
In the end, the sharing of these stories is personal, political, and highly necessary. Not only have women come to me thanking me for sharing via blogging, but I’ve found solace in reading the experiences that others go through — usually so common even in differences. This is not even to mention the variety of edge cases — for example, the men who get breast cancer and must feel desperate in the search through the long tail. Thank goodness for the tail. This is so valuable. May the Internet never cease to be a place of real personal sharing.
Of my core breast biopsy procedure I can share that it was painless if a bit strange to be “shot” four times in the breast with a little compact needle-gun, and three days later I have a colorful rainbow of bruising but probably no scarring this time — and of course I am incredibly fortunate in the results. And finally, there is a little something the procedure left behind, to mark the spot in future mammograms: a tiny titanium chip. I’m fascinated by my new bodily resident and find it looks a lot like a ribbon – which apparently it does. I took a picture of it since I can’t see it and can’t feel it otherwise, and find it looks a bit like a tiny comet-like object suspended just there in my fibroid tissue, hard to focus just like a celestial mark in the sky.
I can’t help but muse over what will last longer — the marks on my body, the marks across the Internet, or my titanium chip.
Relieved about your results, too. And interesting point you bring up about how hard it is to find personal stories through search these days. Corporate/advertising overshare squeezing out the personal now? I don’t think we should be surprised. So we just dig deeper, as you did, and we find what we need.
Thank you, Moya, for sharing the fear, the relief and the words. It is so scary to have to wait for potentially life changing test results. It is really helpful for the world to have your experiences out there.