An encounter with the breast-cancer industry...
Early in November [several years ago] I noticed that my breasts hurt. I found a lump in one. I made an appointment at our local clinic and was immediately given a blood test, an antibiotic and an appointment at a breast clinic. I wasn’t alarmed because breast cancer doesn’t hurt. Everybody knows that.
That evening, a television promo for the evening news promised news about inflammatory breast cancer, a little-known breast cancer that hurts. I didn’t wait for the 11 o’clock news but immediately was online tracking this alarming idea. All the information was bad. Unlike other breast cancers, the survival rate was practically nil.
The next day was taken up in an intense all-day staff meeting with no lights, no heat, no phones; a storm had downed all our power lines. Post-meeting I was about to head to a darkened empty house (my husband, John, was away) with my inner alarm bells clamoring full blast. Couldn’t do it. I told staffer Ruth Pittard what was going on with me. She immediately knew that I shouldn’t be alone and brought back Mary Ella Keblusek, who joined us for the trek to my place in the woods.
Lots of candles, making omelets on the gas stove, wine, a card game, a foot rub–we women do know how to help each other in a crisis, what? It was clear that Lone Ranger wasn’t going to be my MO for this journey.
John drove me to the first clinic appointment–a place I reacted badly to. It was a factory production line. All procedures; not human interaction. When I insisted on changing clinics, Sue Keblusek, a breast cancer survivor herself, was a great driver/companion/tutor, knowing as she does so much about the system. At the breast center I’d chosen, the ultrasound gear showed two oddities in the right breast. I had a consult with a specialist and was scheduled for needle biopsies of the mystery spots.
That’s when I went wide, sure that I wanted even more good women encircling me. Hence the first All Points Bulletin. (I soon got less chauvinistic, including good men friends as well.)
Here are the notices I sent to those good friends.
11/28 APB to OGN–Old Girl Network
John and I are holed up in Bellevue at my son David's house, where there's light, heat and wi fi. For the second time in a few days, Whidbey Island is dark and cold–heavy snow weighted and broke a lot of power lines, and more snow is expected.
We sawed through four trees to get out of our road yesterday, made it through snow and ice and over the waters to keep my appointment with a breast specialist at Overlake Hospital here in Bellevue. Decided to stay over rather than chance not getting back for a needle biopsy tomorrow at 1:30.
FYI I've been chasing this one since November 9–if I've seemed a bit distracted, this would be why. Feeling some better since yesterday's long session with Kristi Harrington MD, who emphatically ruled out inflammatory breast cancer and gave me all the reasons why I should agree to the needle biopsy of two anomalies that showed up on ultrasound the day before Thanksgiving.
Harrington is a find–she listens, answers, understands being freaked out, knows when to laugh and when to say she just doesn’t know. That was her response to Why do I hurt? "Breast pain is idiopathic, meaning we usually have no idea." Fair enough. Beats faking an answer.
Until getting to her and the Overlake team, I felt I was in an assembly line run by rigidly programmed robots–not good for one's freak-out quotient.
I'm still deeply rattled and it feels like time to stop holding all this close–I could use some company on this journey. I know lots of us have been through this, some to discover all is well, some into treatment. As soon as I get the test results I'll let you know which it is for me.
Hang in with me tomorrow–I'm not as tough as I'd like to be.
11/30 Exiled and Needled
Now staying at step-daughter Malory's apartment on Capitol Hill (that's a hip part of Seattle--many cool restaurants).
Got Fred Meyer replacement underwear and a pair of pajamas–we left the house Monday ill-equipped to be orphans of the storm.
I was a wuss for the biopsy–so rattled–but the Overlake crew was superb–so human and caring and totally competent.
Ice packs now. Ice is good. Turns out Viognier and hot toddies are not so good. Seemed like a good idea last night but for someone who hasn't been drunk since 1966... About the only thing I remember is saying "I’m tired of being brave and funny." And then crying for an hour.
The Overlake crew promised that they'd call with pathology news by Friday afternoon.
We just got word that the power is back on at the house and the newly downed trees are off the roads, so we can go home and wait for the news in clean clothes.
As soon as I get the report, I'll let you know. Thanks for being with me yesterday. I didn't like it at all, but it was good to know I was far from alone.
12/1 And the Beat Goes On ...
When we got home just after five last night, there were voice mail messages from both the radiologist and the surgeon–a whole day sooner than they promised. They got the lab report in less than 24 hours, caucused on a plan, and got right on my phone. Are these people conscientious or what?
Couldn't return either call, since their offices were closed, but I talked the surgeon's answering service into paging her–her voice mail had said she'd be glad to talk with me from her home. She called as soon as she'd gotten her kids to bed.
The needle biopsy report was "papillary hyperplasia." She's setting up another imaging and will do a surgical biopsy, removing both the "anomalies."
According to the medical journals that I of course Googled as soon as I hung up, this is the right protocol and the only way to know for sure where I stand.
It sure isn't what I wanted to hear, but it's not worst-case either.
Right now I'm just fascinated with how "first-chakra" my reactions have been through this. Spiritual chops? Ha! It's sort of like the knee-jerk shot I get every time another car comes too close to mine. Since the truck slammed into my Ford, everything just automatically goes into flinch & gasp and no amount of rationality has stopped that.
I think my weekend will be about revving up all I know about getting centered, breathing, meditating. Whatever works for you in crises, let me know and I'll try that too.
Meanwhile, if these messages bring up painful memories or your own fears, and you'd rather not get them, let me know and I'll delete your address–with understanding.
12/12 The Real Boob Tube
I thought I knew what I was getting into. After all, I had an MRI once. Lots of noise. Headphones playing music. A blindfold so you don't look at the fact that you're inside a little tube.
Hah! This was a boob MRI and the differences started with a bizarre foam form that made it possible to go into the tube face down. But not head-first, I hasten to add. That would be truly terrifying.
The form had hollows for bent knees, holes for breasts, a strange cradle for the face, and grooves for arms–raised alongside the head. Aaargh. It was uncomfortable from the get-go and there was at least half an hour of not moving ahead.
I hadn't taken a tranquilizer or painkiller because I thought I was just going to be stretched out on my back, meditating, as I had in an MRI years ago. I shoulda took both pills! Nice women running the gear covered me with blankets–the space had to be cold, for the machine. I shook anyway.
There was a rapid pulse under the music–like an infant's heartbeat–a really big infant–then rhythmic banging and clanging for minutes at a time, different pitches, tones and beats with each restart–I wondered what Steve Reich would do with the sounds–definite symphonic potential, if you like dissonance.
Being belly down after drinking, on instruction, a quart of water, was getting extremely uncomfortable, not to say worrisome. How much longer would it be? Shift focus to aching shoulders–better than pining to pee. They said an MD was coming in to trigger an IV into the needle they'd put in my arm–for a contrast dye. Said MD better not be late. The dye better not add to the gottago sensation
Can I make the shoulders stop hurting? Breathe good air into them. They feel red. Can I make them blue? yellow? teal? "A few more minutes. You OK?" in the headphones. "My shoulders hurt." "Hang on. Not much longer."
What's the worst thing that can happen? My shoulders will be stiff for awhile. And I could wet my pants. Hmmm. There's quite a storm outside so I could stand in it when I get out of this thing and pass for rain-drenched. To hell with it. Sister Eulalia isn't here with the ruler across the palm. I don't make it, I don't make it. Let's make the shoulders lavender.
Remember you wanted these pictures. Remember all the research that said the answers will be in these pictures. Little sips of air. Don't want big gulps of this magnetized, Star Trek air. The trembling is getting severe enough to louse up the pictures. I will not cry.
Think about the rack. If this were the Inquisition, there would be cranks pulling on my hands and feet now. That would be way worse than this. I can get through this. Maybe.
"That's it. You're done." There'd been no sensation from the dye–I thought there was still that to come, but it's over. I’m extruded from the tube, hands are helping me up, helping me rub my shoulders. That's nice but let me have my clothes and aim me at a restroom!
Walking in the wonderful rain, moving anything I want to move, seeing color and John's good face, hearing real sounds–wonders abound.
Out of a long tub now, under a down comforter, chalking up another ordeal survived.
Next, analysis of the pictures, the date for the surgical biopsy. Or–hey–maybe the pictures will say there isn't anything there after all. Could happen if it really were Star Trekian--a machine like that should fix whatever's wrong, not just take pictures. Someday.
In the meantime, I'm loving the ideas that are coming in from people on my email list on how to console oneself when ass-over-teakettle. Lovely lovely stuff. And funny. [They ranged from long Buddhist retreats to chick flicks and pints of Ben & Jerry’s.]
Later on 12/12 A Holiday Break
Fast call from ever-rapid Kristi Harrington MD: the MRI showed "enhancement" at the site of the needle biopsy, no lesions, and some cells that are "not quite normal." All in all, a reading that's not hugely alarming, but a surgical biopsy is still the protocol. Not urgent though. It'll be mid-January.
The holidays just got happier.
1/15 OK The Holidays Are Over
Sending this alert now, because the next few days are going to get hectic–hugely busy time at work, getting everything lined up for being away, first for Wednesday’s surgical biopsy, then for a week in the Cascades. We’ll be at Sleeping Lady for our annual winter R&R, this time, with much stress to Rest up from.
Actually, I’m feeling amazingly calm. I did get a prescription for my first-ever Valium, in case I start to hyperventilate on the way in the door. But for now, without prescription assistance, I’m easy with the whole thing. Just don’t feel like I’m in trouble. Prescience or denial, who knows?
I’ve booked us into the hotel nearest Overlake for Tuesday night so we won’t be worrying about missing the ferry or getting stuck in traffic. I’m in the Radiology door at 8 AM for the placement of a wire that’s to guide the surgeon. Estimated time of the surgery, 11 AM.
Hold some good thoughts West Coast morning time, from wherever you are.
I’ll be back home that evening, I hope not barfing from some nasty anesthetic. Lab results due Friday and we’ll leave for Sleeping Lady on Sunday, rejoicing that it’s over, done, finished, false alarm, all’s well. Maybe.
1/18, 2:40 pm Getting to Thursday
Another hurdle surmounted. Well, maybe stumbled over. Our easy-arrival plan worked yesterday (we stayed in a hotel five minutes from Overlake) but the hospital intake operation jammed somewhat–left hand not knowing etc. etc.
In the wire-placing department, they considered calling it off because I'd taken that Valium before arriving, therefore before signing their Consent form. Even though the surgeon had OKd taking it. Even though I was obviously fully alert (and wishing I were not).
After much caucusing and probably a call to Legal, they decided they could go ahead and wire me. BTW that hurts. Especially when they do two mammograms with the wire in place.
Kept wishing I could just skip Wednesday and be past it all, into Thursday, home, with the whole thing behind me. Be Here Now is really a bitch in some times and places, though I did keep reminding myself to observe it all, and to connect with the caring, funny staffers. Amazing how much laughter does erupt naturally, despite–or because of?–the stress.
Moving on up to Surgery, I actually got in earlier than scheduled–the woman ahead of me that morning was sent home for having taken an aspirin! But this crew didn't care atall about my Valium. And it was helping a bit. A bit. But not a fraction as much as the "relaxant" the anesthesiologist started into an IV. Let's hear it for heavy drugs! (But not for needles--I now have a blue hand.)
I was noting a bizarre overhead light in the surgery–looked like an outer-space octopus–when surgeon Kristi said, just before the drip turned to Lights Out, that she was enjoying my Blue Boob Chronicles–I had printed her a copy of these messages.
Less than an hour later John was telling me that she said it had gone perfectly. A foggy hour or so more then two cans of pop, some saltines and graham crackers. I haven't had a soft drink in maybe 40 years, but it tasted good. And the salt, lovely. Sugar, yum. It puzzles me that hospitals give people junk food but maybe the emotional outweighs the nutritional. It sure did for me the night before–faced with a restaurant menu that had plenty of healthy items, I went for pasta in a cream sauce and warm chocolate cake–after starting with a martini. Gin, butter, cream, chocolate–nutrition shmutrition.
Now I've got my wish that it be Thursday. Amazing how that works, isn't it? Home. The down comforter. Books. Laptop. DVDs. Drugs. It's lovely.
Yes, I will tell you what the phone call says tomorrow. But this is today and all is well. Here. Now.
Same day, 4:49 pm Journey’s End
Beating her own promised timing again, Kristi Harrington MD called a day early.
"Your pathology report is in. No atypical cells, just papillary, no cancer, no more surgery, no radiation, you're done."
"Benign"–a lovely, lovely word.
What a long strange trip it's been--departure date November 9, arrival at "You're done," January 18.
Thank you for such good company on the journey.
Here endeth the Blue Boob Chronicles. I'm thinking champagne.
1/23 A Case for Informed Dissent
Well, maybe not. Not the end, that is. The champagne was indeed a very good idea. But–high in white mountains, far from work, done with appointments and the spectre of radiation or chemo–I find that mixed with the rejoicing, I’m pissed off.
A surprise, that. Feeling around for the cause, I come upon roaring anger at the costs–financial, physical, emotional, social.
OK, I have Medicare B and good backup coverage so the bills, staggering though they will surely be, won’t hurt us personally. But writ large, these required procedures affect all of us. Every procedure, every picture, consult, IV, or cut is turning up in bills that eventually affect all of us–our insurance premiums go up, Medicare costs us more and more as taxpayers.
I counted seven mammograms—never mind that I’m pro thermogram/ anti-mammogram because of concerns about radiation. And false positives. And pain. None of the mammograms detected the anomaly–thermograms did, then ultrasound. But mammograms remain “the gold standard” and you don’t get taken care of unless you submit to the wringer. So one now-blue breast with no cancerous cells currently present has been radiated seven times in eight and a half weeks.
There may be a payoff for the emotional cost–it’s good to be reminded that our time here is limited. One startling finding in that department: I don’t care nearly as much about finishing the long book I’ve been working on for years as I do about writing some of the shorter things that have been nibbling at me, waiting for me to finish the novel.
OK. I’ll find time for them. At the top of the new Don’t Wait list are observations on the role of the warrior in our times, a look at ways to consider the common good in the small things of our daily lives, notes on living in a Pattern Language house, and several images for poems.
Another Don’t Wait: more live time with friends, family, even strangers. I’ve discovered I actually love doing readings of my work. Did two during this Blue Boob journey, many unknown faces among the listeners, and I had a blast. I’ve been a bit of a hermit for years—I see now that the dutifulness of work has pushed aside a more convivial self who loves contact and wants out.
But y’know, I do think there might have been a less grueling way to learn this stuff than all these punctures and squashings and irradiatings.
Mind you, the people involved in all this are dedicated, knowledgeable and caring. Even respectful. When I showed Harrington the thermogram reports that said I had a problem on the right that needed analysis, she asked a lot of good questions about thermograms, which she’d never seen. As you may have noticed, there are still MDs who will express contempt for anything they didn’t learn in Med School or from a corporate rep; respectful questions are a great improvement on such disdain.
An aside on thermograms
The gear and practice of thermography have been around for decades in Europe and even in some parts of this country. Nationally known Drs. Susan Lark, and Christiane Northrup have been recommending thermography over mammography for years. Yet it’s unknown in a major American breast center.
Quick overview: Nothing touches you. A heat-detecting camera wired to a laptop produces photos that pick up “anomalies” long before they become lumps. The cost is equivalent to a mammogram, but no insurance covers it so you’re on your own—and if you need to follow up, you’re probably back in line for the wringer. Nevertheless, I’ve chosen to avoid years of radiation and pain by using thermography for my annual checkup.
I have a modest proposal that might deal with the pressures that may be moving MDs to take the costly steps that they do.
What if at each step of a process such as the one I’ve just completed, the patient were presented with the existing statistical data relevant to their next options? Given an enormous database of cases that should be accessible, what are the odds that you need to take each next step? Give me the probability numbers, tell me the costs, and let me make the call.
If I’m faced with minuscule odds that I'm in trouble, and the next step is one that hurts like hell, costs a fortune, and has potential long-term effects that I don’t like, I would like the option of signing a hold-harmless document. “I fully accept, dear doctor, that you want to be a million percent sure and will move heaven and earth and a slice of my body to get that certainty, but I choose to play the odds and stop here. And I will never sue you if my choice turns out to be the wrong one.”
You might instead opt for the million percent certainty, no matter what that costs you (and/or the taxpayers and your fellow insurance customers). But doesn’t it make sense to stop and assess the data?
Call it Truly Informed Consent/Dissent.
What do you think? I’d like to know at amedlock at whidbeyisland dot com.