BoingBoing's Xeni Jardin on her breast cancer diagnosis
December 10, 2011 2:41 AM   Subscribe

I live online as much as I live offline. Often, I move around in the world staring into a device as I walk, sharing bits of one realm with the other. The morning I went in for my first mammogram, I felt nervous. I would tweet this new thing, like I do with lots of new things, and make the unknown and new feel less so. Maybe by doing so, I thought while I was driving, other women like me who'd never done this would also feel like it was less weird, less scary, more normal and worth doing without hesitation. I'd crack some 140-character jokes. I'd make fun of myself and others. I would Instagram my mammogram.
posted by cgc373 (18 comments total) 9 users marked this as a favorite
Ah yes, saw someone retweet the key tweet in real time... the other side of global social networks.
posted by infini at 3:35 AM on December 10, 2011

If anyone who works for GE happens to be reading this thread: pleasepleasepleasepleaseplease hire me on to the design team whose job it is to make a multi-million-dollar medical diagnostic tool look like LeapPad.
posted by 7segment at 3:58 AM on December 10, 2011

Read this first thing waking up, crying like a baby on the shitter. Xeni and I have had few interactions over the years, but I think of her as a friend and part of this tribe of new-tech hoodlums to which we belong. One of the things I've always respected about Xeni is her ability to tell huge truths simply and without compromise, with an unencumbered drive toe explore, investigate, and drill down to the core. I'm thankful she's sharing her experience with the world, as what is usually such a private experience for most can become known, shedding some of the terror of the unknown for future diagnoses. Plus, with such a rabid gang of super-hackers around her, the process may be fruitful, who knows.

Thinking of her, and telling her such. We love you, Xeni.
posted by CharlesV42 at 4:29 AM on December 10, 2011

If anyone who works for GE happens to be reading this thread: pleasepleasepleasepleaseplease hire me on to the design team whose job it is to make a multi-million-dollar medical diagnostic tool look like LeapPad.

GE Healthcare has been making major investments in lower and lower cost tech making it affordable and available in far more markets. I believe their R&D is being centered around Bangalore.
posted by infini at 4:40 AM on December 10, 2011

Agreed. GE makes some great hardware, including, as is pertinent to this post, xray sources and imaging systems.

There is absolutely no reason for these systems to depend on the proprietary control surface, nor upon the GE emblazoned display that Ms. Jardin took such care to photograph in the makings of this post.
posted by 7segment at 5:28 AM on December 10, 2011

This is very sad and very well written. I hope she continues to write about it as her treatment continues, and then after the treatment when she's cured I hope she writes then too.
posted by Potomac Avenue at 5:34 AM on December 10, 2011 [1 favorite]

I'm frustrated and sad. But I am also struck by Xeni's bravery and strength.

I'm also not in the suggested age range to get a mammogram or a breast sonogram, but I will go get one. I hope Xeni knows that her honesty and candor inspires me more than all the pink ribbons in the NFL. Like Potomac Avenue, I hope she keeps writing.
posted by montaigneisright at 5:45 AM on December 10, 2011 [3 favorites]

Oh, man. I had a scare with this (not a bad one, which I knew because they let me wait several weeks to do the biopsy) and I was a wreck until I got the all-clear. I could feel myself tensing up as I read this. May her chosen course of treatment cure her completely and easily.

(And RIP Betty Ford: thanks for bringing this out into the public eye and helping set up a climate where it's acceptable to seek support for breast cancer and treatment in public.)
posted by immlass at 6:36 AM on December 10, 2011 [3 favorites]

I've had cancer sort of twice (the first time we thought it was precancerous at the time of surgery, but nope!) Happily, I ended up both times with things solvable with just surgical not chemo or radiation. (pro tip: go with the lazy slow-growing cancers.) I'm at a higher risk for several other cancers, however, including breast cancer. Every mammogram and every colonoscopy includes a big undercurrent of fear for me.

I am not a religious person. However, there is something that I have held close to my heart in the way that religious folks use prayer: Every cancer mortality stat is inherently pessimistic. Because all those stats are based on people treated in the past, not the present or even the future. And technology and the ability to fight cancer just keeps improving.
posted by rmd1023 at 7:38 AM on December 10, 2011 [12 favorites]

I reposted this on my website and got an overwhelming response. Good going, Xeni.
posted by elmaddog at 8:10 AM on December 10, 2011

Breast cancer, only one lymph node involved: relatively good outlook.
posted by Segundus at 8:29 AM on December 10, 2011 [1 favorite]

My mother has been through this type of breast cancer twice in 12 years. It's no fun, but survivable. Good luck, Xeni.
posted by vibrotronica at 9:23 AM on December 10, 2011

I'm really glad to read this article, because several sites had picked up the Twitter/mammogram/cancer story when it happened. And if all you know is what she Tweeted, it looks a little "Huh?"

The narrative of her Tweets is, "I went in to get a mammogram and was diagnosed with cancer." And as many people have pointed out, that's not usually the way it works. If they find an anomaly, you usually hear about it later after analysis. In some cases they can rush a biopsy, but even so, a cancer diagnosis just hours after receiving the mammogram is extremely unusual.

This being the internet, a lot of people basically said that Jardin was making it up for the lulz and/or pageviews.

Historically I haven't been a big Jardin fan, but I think she's a decent human being. I sincerely doubted that she was lying about having breast cancer. I hoped that when we learned more about the situation (as surely we would) it would make everything clear.

And so we have with this article. We learn that for some time Xeni had been carefully ignoring a lump, a "funny stiffness," an "anomaly." They spotted it on the mammogram, then did an ultrasound and found a pretty significant (I guess tumor).

The lesson here is two-fold:

1. I understand the need for skepticism, but for chrissake, internet, sometimes you really need to hold it with the pitchforks and the cries of "BURN HER FOR A LIAR." Accept that sometimes you should withhold judgment until you hear the whole story.

2. If you have a thing that you have been studiously ignoring, please get it checked out ASAP. Denial can literally kill you.
posted by ErikaB at 10:07 AM on December 10, 2011 [4 favorites]

She showed me a crater in the waves, a deep one, with rough edges and a rocky ridge along the northern rim. Calcification. Badly-defined boundaries. Not the lake we'd hoped to find.

That part got to me. Beautiful writing.
posted by book 'em dano at 12:01 PM on December 10, 2011 [2 favorites]

In May, just before my 31st birthday, I found a lump in my right breast. Got in with my OB/GYN in just 2 days. She was pretty sure by the way she could move it around that it was just a cyst. She said I could wait one monthly cycle to see if it went away. It didn't, and she (the doctor) was dismayed. She said "I was trying to keep you out of it but I'm going to have to send you for some testing." Got my first mammogram (which didn't hurt as much as I'd feared it would) and an ultrasound of the tissue. It turned out to be a cyst. Doctor offered to have it cut out but I have no health insurance, and it doesn't hurt unless I go pushing on it. So it's still there. She said it might go away on its own eventually. It does feel a little smaller.

At the end of October, my mom had chest pain that got worse on inhaling. Took her to the ER - an "anomaly." Her lung had collapsed. She is living on one lung. Found a tumor blocking off her left lung. It's adenoid cystic cancer - a cancer typically found in the sinuses. The waiting for the PET scan to see if it had spread was nerve-wracking. The PET scan showed some tracer accumulation in her lower back, but since she'd just had back surgery August 4th, that was to be expected. We just barely got her through this surgery and learned there would be another.

Because it's in her left lung and not the right, they have to go through her sternum. The trachea splits into the bronchi in a place they won't be able to see from the side. Her first broken bone. They're going to take out the lung, which may involve making a second incision on the side. The soonest they could do the surgery was Dec. 20th, so I asked if I could have her home for Christmas and they agreed to put it off until the 27th. (It's a very slow-growing cancer.) I think it was easier before the surgery was scheduled, because then I could pretend it wasn't happening - the surgery, I knew, was coming, but had no idea when it would actually happen. We'll be celebrating New Year's in either the ICU or the regular hospital.

We're all in this together. This life. Sure, not all of us have cancer right now. Maybe some of us will be lucky and never know anyone with cancer. But we're all here and all we can do is support each other, try to help each other through. It's scary as hell, but I for one, am so grateful to have my internet friends' support. I'm sure Xeni is too. It helps so much to know that others are sharing this burden with me, that I won't be alone. I tweeted Xeni to tell her she has my support and love. I hope lots of others will do the same.
posted by IndigoRain at 12:55 PM on December 10, 2011 [2 favorites]

Hey you guys. Read you. See you. Feel for you.

Thanks for posting.
posted by salishsea at 1:51 PM on December 10, 2011

a lot of people basically said that Jardin was making it up for the lulz and/or pageviews.

Really? People are saying that? A lot of them? I guess I should know better than to be surprised.

Something about the whole vibe of Boingboing irks me a little, not fully sure why, I am only saying that now to underline this: I hope this works out well for Xeni and she will be ok. It's bold of her to be so public about it and I admire and respect that.
posted by Divine_Wino at 11:01 AM on December 11, 2011

I really find it astonishing that anyone would assume they could know she wasn't telling the truth based on that timetable. When I had a scare (which thankfully turned out in that case to be nothing), I had the mammogram, the ultrasound, and the biopsy done all at the same time, and I really only had a so-so troubling result that they were optimistic would not be cancer. (It was just about this time of year, meaning I remember lying on the biopsy table listening to "Sleigh Ride," being asked, "So, are you ready for Christmas?") And just like Xeni, I got the biopsy back the next [business] day (never have a biopsy on a Friday, is lesson one -- had it been Thursday, I'd have waited one day instead of three). But had the ultrasound shown what hers apparently did, I could have had the same pretty-sure diagnosis from the doctor on the very same day as the mammogram. Her timeline was basically identical to mine. It's perfectly, totally, utterly normal business for a breast health center, based on what I experienced and have heard from others.

Concluding that someone is making up a cancer diagnosis because you're pretty sure you know it usually takes longer than that is, to me, very foolish and very, very mean.
posted by Linda_Holmes at 12:18 PM on December 11, 2011

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