my first mammogram

it started last year, i think in early june, when i was once again insured with a yet-a-different health insurance company – several in the last few years (a ramification of changing jobs) – and though it was time for that annual pap, the insurance flavor of the month, Cigna, did not support UCSF and my pap doctor for years!

frustrated, i wrestled to overcome the beginning of the ‘health’ phase of temptation towards overwhelmance, and did what i always do these days when i don’t know how to find something – i got on the Web. after a few choice keywords sent to google, i found dr. madelyn kahn.

weeding through comments from google summaries like “Madelyn Kahn’s characters name was Eunice …” (a misspelling, it should be pointed out) i found the real Madelyn Kahn MD was praised by the Wellesley Club, rang a bell from a recommendation from a friend in the past, and came endorsed by BA-Sappho with stuff like:

> who is accepting new non-pregnant patients. ([ so and so ] and Dr. Madlyn
> Kahn both came recommended, but I can't get in to see them.) I checked the
...
> Too bad about Dr. Kahn as she's great.

so i forged ahead, got on the phone, disregarded the setback of weeks of a wait, and secured an appointment (a feat not unlike winning the lottery, i think) for sometime in early July.

Dr. Kahn is in fact great. feisty and to the point. she allowed a large swath of time with me at my first visit. she sat me down in her office across from her on the other edge of her big desk and listened and talked and talked and talked. i wished i had a tape recorder, there was so much information about this and that and the other that i wanted to capture. we talked about pregnancy; she told me about freezing my embryos; then there was the question – had i had a mammogram. i had not.

“Lesbians are at higher risk for breast cancer.” she talked about the recommended age with certain “risks” (turns out now they say it’s a risk to not have a baby early), and bloody-well shoved me off to my very first mammogram, at 38, thankyou very much.

it should also be pointed out that my mother had been encouraging me to get an early baseline mammogram for years.

my very first mammogram was then scheduled for July 19, 2002. it was all supposed to be routine, i thought, and it was till i got the letter a few days later.

i arrived characteristically early at the facility at CPMC – up on California street, just across the street from where we brought Nooka on her last day to the fabulous people at the Presidio Way vet clinic. for my very first deal with mammography, the waiting room was packed. there weren’t enough seats. clearly, this was a big business. clearly, there are a lot of people getting news of different kinds. mostly good; some not so. i attempted to breathe deeply and pretend to casually read the paper, which lost my interest nearly immediately. i saw some people go one way down the hall when their names were called, some go another. i thought it some kind of sign or prognosis. i tried not to think that.

the whole thing wasn’t that bad. you get called in a group of a couple people and walk together to the changing room, really another stage of waiting room. you get a smock and go into one of two rooms to strip from the waist up. you have a locker in there and feel like you’re almost going off for a spa day. there’s an odd assembly of what look like metal ball-bearings taped to the walls between the lockers, strategically between the words on the signs telling us what to do with our smocks afterwards. i noticed that some people come back in the room with their “spa”-gowns on, but don’t get dressed right away. usually in a few minutes someone comes in and sings or yells or overly loudly indicates “mz so and so, you can get dressed and go now!” and everybody thinks it’s a happy thing. i wonder who doesn’t get to go.

after another wait in the “spa-waiting-room,” i was taken into the room with the big machines. it was dim – the blinds were drawn – and there were different machines i didn’t understand. i stood in the middle next to the standing machine. a bee-bee got taped to my nipple – to point out where it is on the film later (and perhaps be taped to a wall before dressing!) – and then the tech started to manipulate my breasts two glass shelves. the shelves are raised or lowered like a dentist’s chair. they also pivot around from horizontal to vertical, to get two different dimensions of your breasts. she then squeezed the shelves together, and there we have a breast sandwich. for me, it didn’t hurt at all.

“reach around with your arm and hold on here; take one deep breath and hold,breathe out; take another deep breath and hold, breathe out; now take a breath and hold it” she disappeared behind the other side of the machine and there was a beep. she emerged and i exhaled.

one or two more angles were taken, and i got to go back to the “spa-waiting-room,” but not dress again. eventually the tech came by and sang that i could get dressed and go now, and i figured that was a good sign and that the whole thing was over for a year.

 

my second mammogram

the whole thing was in fact not over for the year. a few days later, around july 23rd, i got a letter in the mail that said:

... We do not need to repeat the mammograms already done, but we will
need some additional special mammogram views and/or ultrasound tests
in order to complete our evaluation.  This should not cause you alarm or
undue concern but should be completed within the next month ... 
Many women receiving our request to return are understandably concerned
that we might have found a breast cancer.  This is, in fact, very infrequent 
(4 cancers per 1,000 mammograms)..."

so then i knew that i was, at least in some way, “special” and was going to get a “special” view. the letter, frustratingly if not understandably short on detail, did contain one tiny code at the bottom that caught my eye:

"BIRADS 0"

so along with my not-undue-concern in tow, on to the Internet i went again, giving me a new vocabulary for “BIRADS” but not necessarily helping me real insight or – certainly – calm. BIRADS – or “Breast Imaging Reporting and Data System” – ranks your mammogram from tame to quite bad (in my simplified view), 1 to 5 respectively. what’s zero, then? google summarizes: “BIRADS 0 – the Abnormal Screening Mammogram”. other google summaries were more disquieting, lumping the zero together with the bad 4 and 5: “… 112 cases had visible signs of breast cancer that a majority of the 5 panel radiologists deemed ‘actionable’ (ie, assessed as BIRADS 0,4 or 5). ” i was getting deep into Internet speculation and it was doing me no good.

i called eve. Eve Harris is an excellent resource and fine person at that. she’s intimately familiar with this whole deal, and also works in PR with breast cancer at UCSF. she wasn’t pleased for me. the next day as soon as the office would take my call, i got on the phone, and got myself another mammogram – August 1st, 7:45 am.

i called dr. mulder. caroline mulder, my (kickass) therapist, m.d., told me the good thing about it is that when you go back for these “diagnostic mammograms” (the regular annual ones – my first mammogram – are called “screening” mamograms), they read the results right away, and you don’t leave the office without hearing them.

august first was a friday; leanne came with me. we were at CPMC’s breast health center before most anyone else. people weren’t there and the elevators weren’t working yet. we couldn’t find any stairs. the appointment said come “15 minutes early,” but i guess that doesn’t work if you’re first in line. much less crowded in the waiting rooms (read: empty), it was well worth the foggy cold early awakening.

when i was called from the “spa-waiting-room” and taken to the same machine, i was told that there were tiny white dots found in my left breast called “breast calcifications,” and was given the pink pamphlet. the woman checked to be sure i’d had no anti-perspirant or powder before, and reassured me this didn’t come from cheese or milk. i should still eat the tons of cheese i eat. thanks be to god! they were going to ‘blow up’ a picture of my left breast to get a better look. we did the “breathe in, hold it” drill for a bit, and i was sent back to the waiting room.

this time, i was asked back from the “spa-waiting-room” in my smock. we took some more pictures. seems they were finding the tiny white dots ok on the side view, but couldn’t find them on the front view. she tried a few more blow-ups. i was sent back to the room. finally i could get dressed, and i sat down and waited again with leanne.

things were heating up now, and the waiting room, empty when i came in, was now buzzing. i wondered (of course) if there was some dire reason it was taking so long to find out results. after all that time (i forget how much), i was finally summoned – this time, leanne allowed with me – to the room with the white lightboxes on the wall and the black-and-whites of amplified breast tissue. i was taken to my mug shots and introduced to r. jacobs m.d. this man was quite busy. almost immediately after he started talking to me, a woman came in and hovered near us, trying to tell him he had to go somewhere else. i was fairly calm and trying to understand what he was saying. i only later grew resentful, moreso in hindsight with myself for letting the woman let the man need to go right away. he wound up spending about three minutes with me discussing the films, and telling me the result was i should just come back in 6 months.

“it’s something we nearly wish we hadn’t found”, he said, “see these tiny white dots, in two separate areas? they’re probably nothing to worry about — most probably benign — 98% probably — and we’re not too concerned about them for three reasons: not irregularly shaped, not lining up like protesters on their way to the lymph nodes (of course only my memory paints it this way), and we can’t find them anyway on the front view.” that last bit wasn’t so reassuring to me. before he was whisked out, i managed to ask if it made a difference, the six-month wait, if they were really ‘bad things’ instead of benign? he said no, on his way out the door now, mortality rates were unaffected. i could stay as long as i wanted to look at my mammograms. great.

leanne and i stood there a bit, trying to get as much wisdom as we could from my breast photographs. it looked like something on the upper-right, and on the lower-left. it looked like black and white pictures of fibrous goo, with white dots every now and then in just a couple of places- most of which were pieces of dirt on the film. i wish i could have gifs or jpgs of them now to post here and to look at… finally we left. i had another pink piece of paper, checkboxed as follows:

 "Probably Benign Findings; follow up mammography recommended:  
left breast, 6 months".

then, on august 9th, i went to my twenty year highschool reunion.

cigna’s records for me for that day tell me it cost:

"x-ray  177.96  100% covered"
"radiologist  72.00  100% covered" 

thank goodness for that!

 

my third mammogram

six months after august 1, 2002, fell for me last friday, on january 31st. once again i chose the first appointment, 7:45, and once again leanne accompanied me. it was a fogstorm out in the richmond. we’ve been on a non-coffee kick. we were cold.

something was wrong; i sat in the ‘spa-waiting-room’ for over a half an hour – people filled into almost every chair now, waiting lists for the lockers – and the tech came in and addressed me: “i apologize, i have a problem or process i have to correct, we’re short-staffed, it’ll be a little longer to wait”. i was really trying not to get irritated, but it wasn’t working, because that waiting and sitting before a mammogram is a particular kind of anxiety that even the benign chronicle can’t appease. i asked, in as low a voice i could muster, how long it would be. maybe 20 additional minutes. but i was the first appointment slot – the second to arrive – i said. she knew. she was going to correct her problem or process. i tried to stay kind. the chronicle crossword was too bloody frusterating. the news of bush and war and iraq was annoying. i waited another half hour. i got my jacket on – as much for something to do and fidget with as for to bear me more warmth. the fogstorm obscured california street out the window. i tried to entertain myself with the idea that they had discovered something special about me and what they really were wanting to do was to clone me into several people – perhaps whole colonies on a distant planet.

leanne, meanwhile, had finished reading all of the articles in the chronicle and was thoroughly engrossed in some sort of periodical.

i went in and out of the “spa waiting room” several times, feeling quite photogenic by then, but this time the result was they either got better films, or something was becoming clearer. s. denny, m.d., was calmer and more accessible and thankfully was not being dragged out of the whiteboard room as dr. jacobs was the last time i got to discuss my mamm’s. i was grateful when she said they were recommending biopsy – i thought that would put a definitive form of punctuation on the six-months, and particularly the last hour, of waiting. my checkmark on my pink piece of paper moved down a box:

Findings requiring further evaluation by breast biopsy:  
calcium deposits, L

dr. denny told me it was 94% certain that these calcifications were benign. we wanted 100%, she said. i thought that was a good idea. but my certainty, after all, had slipped four percent.

so you go back to your doctor to get a recommendation for a surgeon at points like this. this is where i started to feel like a project manager, like it was a product to ship at work – or rather like i wished this project had a project manager. fortunately, i now had a cellphone, and while i was waiting for dr. kahn to return my call, i could walk about freely at work, as if i wasn’t waiting …. and waiting …… for five hours, at all. as if nothing in particular was on my mind.

she was efficient and straightforward. she commiserated that this should happen to me with “my first one”. she gave me the name of Dr. Nima Grissom, said she was an excellent breast surgeon, and that she wouldn’t send anyone to anybody else.

i called dr. grissom’s office, but was told there was no appointment till the end of february and i probably wanted something sooner than that – which i hadn’t realized i did – after six months of ‘wait and see’ – did i? – and was dispatched directly to the doctor’s voicemail. “i was referred… dr kahn… mammogram, calcifications, end of february, my contact numbers, etc etc etc” it was all i could do not to leave my email, my website, my weblog.

nothing by the end of friday. the weekend was going to have to be in limbo. the sort of prelimbo limbo. i called my mom and dad and they started to worry. leanne started to worry. everything becomes bizarre, like a badly-written movie. i start to not feel funny or easy or just merely taken as-is anymore. people at work make fun of my clothes. i become paranoid. others must be in on the cloning.

so this morning, i called dr. kahn’s office again. the receptionist told me to demand an appointment, saying it’s an emergency, and that made me feel more “special”. so i called dr. grissom’s office back and immediately got an appointment on february 18th, without even needing to demand. such an arbitrary turn of a phone call. this would be the ‘pre-appointment’ appointment – in other words, you come and meet and get looked at, then you get an appointment set for a biopsy — of what sort, i know not. i know not even if she will perhaps recommend something else. but at least it’s in motion.

eve wrote us about what it’s like to have a biopsy (nothing ice or a bag of frozen peas couldn’t cure), and of course, i hit the Internet. some particularly pretty pictures at http://imaginis.com/breasthealth/biopsy/biopsy_methods.asp seem to lay out the possibilities pretty well, though i’m not sure what i think about that wine cork one. i start to wonder what kind of questions i should ask. it’s like a test at school or an interview for a job — i want to be sure i do the right things — me.

dr. mulder called to say dr. grissom was the best in the field. it could very well take a few weeks to be seen. i should keep her appraised.

but this afternoon, i received a phone call from dr. grissom’s office, probably now following up on friday’s voicemail: “dr. grissom would like to see you this wednesday, at 8:30 a.m.” wheeee – i’d won the lottery, again! it’s a relief to be “in” sooner rather than later. but what kind of prize awaits me? …