The Internet And My Titanium Chip

My Titanium Chip

My Titanium Chip

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.

flying by surprise

flying by surprise

swinging at venice beach

when i dare to become powerful, 
it becomes less and less important
whether i am afraid

or something like that, said audre lorde.

perhaps my fear of flight ties into trouble feeling good or doing well or being powerful — or maybe just being recognized as feeling/doing/being as said. this nervousness seems to tie in somewhere to the giddiness about breast surgery, as well as the fears and perhaps even guilt that i have felt.

at any rate, i flew. but i flew by surprise. so i’m not sure whether to feel good or proud about it or not. but therein lies the grain of salt, the bother, perhaps the pearl itself.

here’s how it happened… as quoth from the fofc.com bbs:

leanne wanted to do something special to celebrate my biopsy and its results, so she blocked last weekend, april 25-27, out on the calendar. i met her after work on friday and she led me to BART. just when we came up out of the tunnel on the oakland side, she broke the news that we had a 7:40 reservation on JetBlue to Long Beach. now… in my mind, i translated this – momentarily – to “we have a 7:40 reservation… for DINNER”, and all was well – but when she then produced a valium from her bag and said we were visiting ted in venice beach, i knew something was seriously up. she thought of everything – the valium (though i thought of flying the trip back without it, watching those planes before takeoff just sent me a bit far), the rubber band (!), the aisle seat, up as far front as possible, the preboarding.

the flight itself — it’s great! all great; i love the banking in the air, the view, and i love jetBlue! the (faux?) leather seats and the tv on every seatback… the wacky crew… the new A320’s. a little hard on the first landing – but leanne says that’s because computers control it — nose down so hard? she even chose the least intimidating airports she could think of — oakland is great, just take BART — and long beach — why, that’s practically like a small train station, and you even walk across the tarmack to get on and off the plane.

in venice, we went to a dinner where ted introduced us to his good friends and they and everyone in town seemed to be in on my trip, looking at me and wanting to know how the flight was. at first, it felt a bit humiliating, but then i realized nobody was saying “it’s so much safer than driving… the fear is silly… you shouldn’t worry… etc” – people were curious and understanding – one even shared his deep fear of dogs. it was really nice that way…
later, when i was talking about some past guilt i have about a relationship, leanne looked at me and said — have you never gotten over this guilt, and you feel like you don’t deserve to live through beautiful plane flights, instead doomed to crash and die? a thought that had occurred in the past…
but in the meantime, there’s valium – and – this time – total lack of anticipation.

of course the problem is this is not really practicable for that wedding in august i said i can’t go to, and i’m not running to purposefully fly anytime soon… but i did have a good time flying this last weekend… and would like to learn how to fly helicopters or something, since i seem to like it so much.

some doubtless will not understand this particular fear and babble, perhaps even dismissively. but everyone’s, for sure, got their own little spiders, dogs, and dark places — this i am sure of … as also of the freedom — and okay, the power — of overcoming them.

rock star, with knives

rock star, with knives

i went to see nima grissom about my little knot today; “you couldn’t stay away, could you?” she taunted me as she walked into the office. my secret’s out — it’s true. i feel like a bit of a rock star when i get to see dr grissom. or i feel like she’s a bit of a rock star. perhaps it’s all those breasts she handles. or her skillful hands. or because she’s the one holding the knife… or something.

sure enough, just as she had advised in her postoperative instructions, it only took a couple of minutes to deal with the incision. she got out some kind of tweezers and fished out what looked like the knotted end of a fishing wire, the kind my brother used to tie flies with. she said it seems like i’m the type that just gets irritated by and tends to reject internal suturing, and that for future operations, i should probably get a different kind of suture. funny that it was just one side of one of the incisions that kicked up such a fuss. i asked her if this meant it wouldn’t heal properly and she said it should be no problem healing, and even if it was, she could re-suture it if necessary. she asked me to come back and see her in three months, so i have an appointment on july 15. midsummer. my goodness. midsummer.

i did ask about two additional things that had been whittling at me – about how much tissue was taken out, and about what happens to it afterwards. now, it occurs to me that doctors probably aren’t excited about the prospect of someone writing about them on the internet, probably in case some sort of slander occurs. so now i feel an odd sense of privacy about publishing my experiences with specific doctors, even though i find this sort of thing valuable when i do my own searching online. anyway. i have no problem saying anything positive about dr grissom. about my seven centimeters, she simply said that ‘just the right amount’ was taken out. when i mentioned the marbly, hard sort of ridges around my lateral incision, and asked if the tissue would grow back around it, she said that breast tissue is indeed very forgiving (does it have to do with being female?) and that things would grow back to normal in about a year or so.

now leanne, on the other hand, seems to be a bit less forgiving at present about the state of my breast. it seems it freaks her out no small bit about the hard ridges in my current left breast. i hadn’t realized that was startling to her. i suppose all things pass.

the other little thing i asked about was “where does the tissue go?” they keep the tissue. they keep it, was all she said. i’m sitting up on a shelf in a jar somewhere. maybe in a cold dark room. this deepens my cloning theory. let’s see what more i can get out of her in three months. and on her way out, she asked if i wanted to take the little knot with me and we laughed. it wouldn’t make for a good picture on the internet – though i did think about it, i admit. dr grissom has a sly sense of humor and a funny sort of ducking smile. i wonder if i was awake during the surgery and could remember whether she wielded the same sense of humor with a knife. i decided everyone was covered up in masks anyway, and for all i know, i had cucumbers on my eyes and was getting a massage and facial. i know it’s perhaps a stretch, but i don’t get surgery all that often, and maybe haven’t quite gotten over that versed halo.

surely to the entire viewing public’s dismay, i guess it’s best to suspend the weekly pictoral wound updates until i heal a little bit more from our latest romp. i’m supposed to apply neosporin for a few days, and should scab up all over again over the little knot.
how will i wear my easter bustier?

oh and for the record, since we’re talking about records, i also definitely recommend marty at hair play: http://www.sfstation.com/specialty/hairsalons/hairplay/.

sickness and knots

knots
sickness and knots

by the time i got home thursday night, i had a fever of 101, sore throat, body aches, chills … the whole drill. i’ve been in a hot bath or asleep since then, and leanne is once again making me nice foods. this is the longest i’ve been vertical since thursday. we didn’t get to go to vegas for nate’s birthday and i’m sad for that, but i wouldn’t have been much fun. as it is, i feel a bit on the mend, though it’s quite possible nate and a martini in his honor would have sped it along.

i have noticed just today that my medial incision, previously un-scabbed, now quite possibly shows knots surfacing. i quote from dr. grissom:


Internal sutures are most commonly used to close the incision. They dissolve after 6 to 12 weeks. Occasionally the knot, which is tied to prevent the suture from unraveling, will come to the surface of the incision and cause drainage, redness, and irritation. This usually happens several weeks after surgery. If this occurs, please call the office and come in to have it removed. This is not painful and takes just a few seconds.

it is in fact six weeks since the surgery, so the timing is right for the dissolving (or the floating to the top?). i’ll call on monday if it looks the same. the knots, the sickness, and the SARS are all presumed unrelated! going to lie down again…

money

money

a stunning parade of bills for my biopsy has been arriving, and i’m not entirely sure when it will end. i’m lucky to have insurance. with over ten thousand dollars billed already to insurance, and most of it covered save for a few hundred dollars, i don’t know what i would have done had i been one of the many many many poor without insurance. here’s a sampling of my halfday of services:

  682.00 -- radiologist, including localization surgery 
                and mammography
  560.00 -- anesthetist
7,663.45 -- hospital, over a thousand of which is for 
                drugs alone
2,100.00 -- surgeon
  734.00 -- pathologist

since it turns out my old car costs $500 for its old-car tuneup today (always worth it to visit the good folks at pat’s garage), it’s a lucky thing there is 10K less that i have to owe.

blood

blood

two of my scabs fell of in the last few days. does that mean i’m healing or scarring?

blood is an interesting thing. do an idle search on google for “blood, scabbing, and healing” and you’ll find a lot about tattooing, PC game cheats, some about tainted blood and platelets, and less about what a scab might actually be good for. there’s hardly a thing you can look at on the news, or in the ‘real world’, these days that doesn’t have as its basis — and its manifestation — blood or its products, yet i hardly comprehend what it’s actually made of and what it does, much less what to do about scabs and scars. my friend todd and my late friend david were forever changed by bad blood products from bayer, baxter, and alpha pharmaceuticals. deb suffers from an entirely opposite condition of the blood, and many of us rely on products that affect the blood – but ironically might damage it – to keep us alive. two years ago you couldn’t turn on the news without hearing about mounds of burning animals, killed in masses because of the ‘mad cow’ disease risk. the phrase of today is once again ‘no blood for oil’.

if scabbing means bleeding has stopped, what does the end of scabbing mean? there is only a tiny scab left on the left corner of my medial incision. i haven’t even been picking at the scabs, because i understand that could make scabbing worse — though i don’t know why. when i lie on my stomach, one of my favorite ways to sleep, my breast hurts; when people hug me these days, i often wince. sometimes, even if it doesn’t hurt or they didn’t hit the sensitive left breast, i shout out ‘ow’, but nobody thinks its funny.

i suspect all the scabbing will be gone soon, and then i’ll see the full potential of the scars — marks of being stabbed, however precisely and on purpose, and then prevented from bleeding. then i just have to figure out how to heal.

missing

missing

it’s now just over three weeks since the biopsy, and my breast has been sore for the past few days. it’s not the incisions that are aching – those are drying up though generally look the same as they did a week ago, and the bruise, though fading, is still there. it’s more like the flesh that was removed is filled with a dull ache in its absence. leanne says she misses the pieces that are missing.