Coffee heat rising

funny

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Damp!

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Okay, here’s the fourth attempt at a post today. In fact, this is being written in Word so WordPress (or, more precisely, Cox) can’t erase it again.

So the dawgs and I awoke to quite the little freshet this morning. It stormed most of the night, and by dawn water was hosing out of the sky.

The mayor and the governor declared states of emergency over the storm. Tina said all the freeways on the east side of town were closed, and they’d closed her daughter’s school. She was supposed to go in to Tempe for some big confab with one of her several bosses. Haven’t heard whether she even tried – it would have taken her two hours to get there through the frantic bedroom-community commuters. When a freeway shuts down in both directions, the gridlock defies belief.

This part of the city made out OK, as far as I can tell. My neighbor across the street lost a big branch of her beautiful specimen paloverde, which was quite a gem. She said she’d call our local arborist (guy lives here in the hood) and try to get it trimmed off. In the meantime, her hubby will trim off the broken branches and haul them into the alley.

We didn’t lose power, for a change, although some parts of town did. The water did not come up to the back door, thank goodness, so there was no flooding in the house. During the night there was a fair amount of lightning and thunder, I think. It scares the dogs and causes them to wriggle around.

Somewhere in the darkness, they tried to persuade me to get up and let them off the bed, but I was so heavily drugged they couldn’t get me to climb out of my stupor. So they finally subsided. In revenge, one of them peed on the floor come morning, when they were disgusted to find that vast amounts of water were still falling out of the air.

They hate to get wet. I mean hate to get wet. Cassie will not go out in the rain at all unless you pick her up and carry her out. When your boob hurts so much it feels like it’s going to fall off, that is not a very pleasant task. Carried her out three times and she still refused to go. Just stood there looking miserable. Same with the pup.

 Yesterday I worked up the nerve to try the cephalexin, after carrying it to a pharmacist and asking what would happen if I really am allergic to penicillin. She agreed that Cipro is, said she, “not the drug for you.” She said only 10% of people who have allergies to penicillin get a reaction to cephalexin, and advised having a bottle of Benadryl and the phone at hand.

Shortly after I arrived home from that venture, my friend The PC Magician (a.k.a. Your E-book Builder) showed up. When he realized what was up, he sat there and made small talk endlessly. I am pretty much on the verge of delirium and do not recall much of what was said, only that he did not leave after I swallowed one of the potentially toxic pills and then later decided maybe I should try a Benadryl.

He also has had negative experience with Cipro, and his lady friend is among the berzillions who have had seriously bad reactions to the stuff. He ranks, now, among the many who believe it is toxic.

Amazingly, yesterday I found a research study published in some journal of skeletal development where the team used Cipro to induce toxic lesions in the growing bones of adolescent rats.

That should tell you something, huh?

They discovered, btw, in this limited study (40 subjects, plus test groups) that magnesium supplementation worked to ameliorate damage to bones, joints, and tendons brought on by Cipro, which among other things chelates magnesium and calcium out of your body. That’s why the package instructions tell you not to take antacids with it (while the stuff is eating out your gut): an antacid containing magnesium, such as Gaviscon, neutralizes the drug by about 90%.

Magnesium supplements are nothing to mess with. You can make yourself good and sick overdosing on that stuff. However, quite a few foods are rich in magnesium, among them green leafies like Swiss chard, kale, and spinach, quinoa, bananas, certain nuts, and stuff like that. I, however, am too sick to drive around in search of more food – actually am out of food and surviving hand-to-mouth on whatever is in the fridge or kitchen cabinet.

Anyway, no ill effects ensued from the cephalexin. Can’t see that any especially good effects are ensuing, either. My fever dropped from around 100 to about 99.4. I need to get one of those digital thermometers: trying to shake the stupid mercury thing down has sprained my wrist, and it’s almost impossible to read.

My business has gone to hell on a skateboard. I had to blow off a client this morning who kept pestering and pestering about a stupid little detail and wanted me to revamp part of an index RIGHT NOW – before flicking eight o’clock in the morning!!!!!

My beloved novelist awaits a chapter that I haven’t even started.

PC Magician brought over an e-book proof yesterday and I haven’t read it. Spent the entire day in bed, unable to function. Actually, I hoped that maybe if I just stayed quiet all day while slurping down antibiotic pills, some improvement would take place.

So far, no dice.

Internet connection has been cycling on and off all day. Four times this morning, I tried to publish a FaM post, and four times Cox killed it. When you hit “Save” in WordPress, you’re engaging the Internet, too…so when I tried to save the things, Cox disappeared them by going offline in the middle of the process. Finally gave up and went to bed.

God. I must have food. Going to AJ’s to buy one of their overpriced dinners, which should last for two days. Bye.

Beautiful Choir Day…a Temporary Respite

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So yesterday was the kick-off for the new season of singing, with the annual all-day Choir Workshop. Not quite all day for us amateurs — just 9 a.m. to 3 p.m., plus a potluck in the evening. But the choir director then spends the rest of his afternoon with the professional singers. He must be ready to fall face-first into the sack by the end of the day!

At any rate, it was great to see everyone again,  great fun, and as usual another wonderful learning experience. We’re singing a gorgeous Requiem by a living composer named Vernon Williams. It is amazingly beautiful. There are, as yet, no recordings of it, so I can’t share somebody’s YouTube rendition here. But this will be an Evensong performance, and so it’s possible that our director will record it.

One of the many discoveries that come one’s way when singing with a group like this is the fact that modern composers have about given up on writing cacophonies that scare audiences out of a concert hall. Truth to tell, even after several years on the chamber music society’s board, I never imagined I would say I actually like a piece of contemporary music. But lo! These days I can say I like quite a few of them.

I felt a great deal better when I left the church’s campus. A day with friendly people goes a long way to brighten your outlook. It must be said that even though one’s pets are cute, sweet, and all that, there are limits to the company of dogs.

As usual, though, the day could not pass without being haunted by the present nightmare.

I’m driving home — about a five-minute journey — and suddenly I can’t see the street signs!

Holy shit. I’m seeing double, and I can’t see to drive safely.

Sometimes I get ocular migraines, and once one presented itself as severe double vision. Once. The eye doctor speculated that migraine was the least of the possibilities: in fact he thought it was an early symptom of MS.

Double vision occurs in MS when the muscles of the left and right eyes cannot coordinate to make them work together to create a single image. But when I put my hand over my right eye, I was still seeing double through the left eye. Not MS.

Migraine?

I keep driving, even though it’s breathtakingly dangerous, because I don’t have my purse & flip-phone with me. Even if I did, there’s really no one I can call other than 911, and I DON’T want to go through  THAT again. By the time I reach the turn into the ’hood, it’s starting to clear up, so I make it to the house without killing myself or anyone else. Thank God.

That it passes so quickly suggests it’s not a migraine: it usually takes at least 20 or 30 minutes for an ocular migraine to start to clear up, and ocular migraine has aftereffects, not least of which is a headache or sense of disorientation. Neither of those are present.

And by the time I reach the house, another thought has occurred:

Not MS.
Not migraine…
Cipro??????

 So after I let the dogs out I fire up the Hypochondriac’s Treasure Chest and look up Cipro, the antibiotic Dr. P put me on when I complained about swelling and redness.

Holy shit is an understatement. This is a powerful, dangerous drug whose manufacturer specifically states it should not be given to people over 60.

And yes. One of its (lesser…) side-effects is double vision.

Call the Mayo’s after-hours line.  Get a young resident who decides to give me a penicillin-derived drug, despite my supposed (but unproven) allergy to penicillin.

Although few drugs sit well with me, the penicillin connection remains vague. When I was a young thing, I told a doctor I had never had measles (rubella). He didn’t believe it, so he had a titre test done, and yea, verily, it showed I had never had rubella. Then awhile later for some reason I was put on penicillin. A rash developed. But so did the entire array of rubella symptoms. In my late 20s or early 30s, I was very sick. But the doctor, as doctors did back in the good old days, patted me on my pretty little head and announced it couldn’t be rubella, it must be a reaction to the penicillin.

Couple years later, we decided to get pregnant. When I went off the pill, I had another titre test, and yea verily it showed I’d had rubella.

So I may not be allergic to penicillin at all. But on the other hand, anything’s possible.

The pharmacist says to lay off the drugs until tomorrow morning. Don’t take any Cipro, but don’t take any of the new stuff tonight, either.

So I’m laying there in the bed, just freaking exhausted but can NOT get to sleep (the insomnia’s  been back, too, though at the time it doesn’t occur to me that insomnia could be anything other than “not surprising,” under the circumstances). My ears are ringing. Ringing like an alarm clock is going off somewhere.

I’ve had tinnitus in the past. It is exceptionally unpleasant, and one especially unpleasant aspect of tinnitus is that it can go on forever. For some people it’s a permanent condition, and it can cause (or at least be associated with) hearing loss.

Now I think…hmmmmmm….

Out of the sack and back to the laptop.

Cipro…Google Advanced Search Settings: Reading Level: Show Only Advanced Results.

This strategy tends to winnow out the woo-woo and the bullshit, leaving you with a better shot at finding actual science. And what should it bring up but a hair-raising product description from the FDA.

Cipro has a black-box warning: it causes tendon tears. It should not be prescribed to people over 60 (I’m pushing hard at 70), it should not be prescribed to people who have had tendon problems (about 20 years ago I ruptured a tendon when I fell, hiking in the bottom of Aravaipa Canyon. The resulting surgery and months of physical therapy were NOT fun). Tendon tears can occur months after one quits taking Cipro.

• Physical exercise — including, according to a victim writing at another site, something as mild as playing charades in your living room! — can cause tendon tears.

• You should not take Cipro if you are given lidocaine (the Mayo injects lidocaine at the point where they insert the IV for surgery…which is supposed to happen a week from tomorrow!!!).

• You should not consume anything containing caffeine (including chocolate, coffee, or tea — I live on iced tea during the summer!)

• It makes you sick at your stomach, but you cannot take antacids while you’re on it.

• It can make you dizzy (ah! so there’s the explanation for THAT!) and you should not drive while taking Cipro.

• It can cause trouble sleeping (which would be why I’m awake in the middle of the night digging through the Hypochondriac’s Treasure Chest…).

• It causes rapid heartbeat (huh. Here I thought it was just a recurrence of the anxiety attacks).

• Chances of dangerous heart rhythm changes are higher among older adults.

• Cipro can lead to C. difficile. SDXB’s ex-wife died on her living-room floor from a C. difficile infection. You should call your quack immediately if you experience vision changes, tachycardia, and a host of other exciting phenomena.

Drop your search parameters back to the Low-Brow Prole level and do a search for Cipro + tinnitus or Cipro + ringing ears. And hooooleeeeee shit! You get rafts and rafts and rafts of furious posts by people who have been permanently harmed by this drug. I’ve never seen so many anguished, angry posts by so many people — there are entire sites  devoted to rants about Cipro. More than one of them. Even the staid Wall Street Journal got into the act, in its low-key way (wouldn’t want to offend Big Pharma, corporations being people with feelings, after all). And an array of ambulance chasers  is soliciting victims to file lawsuits.

So widespread are the negative reactions that there’s even a slang term for the syndrome: “floxing,” after the drug’s generic name, ciprofloxacin.

What on EARTH would possess a doctor to prescribe such a thing?

• She certainly knows I’m over 60.
• I’ve told her I walk a mile or two a day.
• I’ve told her I have to do physical therapy exercises to keep back pain under control.
• I’ve complained about not being able to use the pool because it’s a key part of my exercise program.
• When asked, I told her that I had ruptured a tendon in the past.
• She knows I have constant back pain, and with the share of IQ points she owns, she might be expected to figure out that I have chronic Achilles tendonitis because of the chronic sciatica.
• She knows I live alone and have no one to help me.
• She knows a fair amount of physical exertion is required to maintain my home, yard, and dogs.
• She knows I have to drive my car to get food in the house.
• And I volunteered that in my experience if a drug has a rare or weird side effect, I’m gonna get it.

Of course the latter whinge is going to be discounted. But the fact still remains that the FDA and the manufacturer state the drug should not be prescribed to elderly people, that the stuff can cause tendon rupture with little or no provocation, that it causes dizziness, sleep disturbances, vision disturbances, tinnitus, cardiac arrhythmias, and on and on…and many of these effects are permanent!

The swelling and inflammation have gone down considerably, quite possibly as a result of the Cipro. I’m sure not taking any more of that, though.

So should I switch to the cephalexin? Highly problematic. The package insert says, ALL CAPS, do not take if you’ve ever had an allergic reaction to penicillin. Well…was that an allergic reaction? To decide, I have to take a leap of faith or non-faith in the accuracy of a guess made by a physician some 40 years ago.

Honestly. I wish I’d known, at the outset, that an encapsulated papillary carcinoma is NOT cancer, that a number of experts urge the term “carcinoma” be removed from the term for DCIS, and that a large and growing school of medical thought believes the best course of action for these things is watch-and-wait. If I’d had any idea, I would not have allowed anyone to cut me open.

Too late now.

Tiny Rays of Sunshine

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So come this morning the kitchen sink is still clogged.

A week or ten days ago, I paid an outfit found on Angie’s List $271 to install a new garbage disposal, which the plumber claimed would fix the problem. It did not.

When he saw it would not, he said, well, the way the thing is hooked up under there, this one piece of piping has settled so it’s no longer angled so water drains downward from it. It needs to be replaced, but he’ll have to order the part.  He’ll call when he has it.

Days pass. The kitchen sink continues to clog. It freaking hurts to have to plunge the effer, because of the dissected boob. I call. They say they’ll get in touch with him. Day or two later, I call again. They say he’ll come back NEXT TUESDAY.  Yesterday the sink plugs up and won’t drain.

Back to Angie’s List. Find a different plumbing co, one with 423 “A” reviews. I figured you could fake, purchase, or bribe 100 rave reviews, but 423? Not likely. At least some of ’em must be the real, genuine articles.

Lovely young fellow shows up: handsome, clean, nicely groomed, amazingly punctual and amazingly polite. I tell him the tale told by the previous plumber. He studies the problem.

“Let’s take it apart,” says he.

And yea verily, he shortly discovers the obvious problem: a fat plug of black grease in the drain line.

I do try valiantly not to let grease get down the drain. But when you eat salad every day and you dress it with olive oil and lemon or lime juice, it’s hard to avoid SOME grease getting in there.

He shovels the thing out, rotoroots the thing out, cleans and whacks and cleans and whacks: a miserable job in a cramped miserable space. Reconnects the plumbing.

It works!

He says the black iron plumbing is probably getting constricted, it being quite a few years since it was installed back in 19 and ought 71. It will never, says he, run perfectly. But it’ll do the job for now. Replacing it with copper or plastic, he says, will be extravagantly expensive.

With the Angie’s List discount, he goes out the door with $153 in his pocket.

So…I felt a little less taken advantage of than I have over the past several weeks.

Otherwise, it’s crazy business as usual.

Cleaned up two piles of dog mounds — undoubtedly Cassie’s. Installed the fancy hinged kiddy gate in the office doorway so the dogs can be penned in here with me when I’m working, thereby preventing them from sneaking into the front of the house to poop. Job!

The minute the new plumber showed up at the door a) the phone rang–a choir friend; and b) Ruby escaped from the room where I’d penned her and THREW herself against the front door.

Phone: Lovely and dear friend wanting to commiserate on my trials and tribs. I can’t easily excuse myself because her trials and tribs far exceed mine and … well, it would be rude. I can’t pick up Ruby with one hand while holding the phone with the other because the boob on the  Ruby-picking-up side hurts too much for me to lift 15 or 18 pounds. The young plumber dude waits patiently in the blasting sun.

Finally I corral Ruby, let the gent in the door, and, while chatting, show him into the kitchen. Friend and I get off the phone. She has had REAL cancer, not “precancer” or some such bejabber, and everyone is worried and heartbroken over her very considerable challenges. It was incredibly, amazingly gracious of her to call and offer moral support.

Call old, beloved gynecologist down at St. Joe’s. I want a second opinion, and before I let the high-powered surgeon lop off my boob, I want a third opinion.

The Plumbing Challenge takes some time. Shovel the excellent young man out the door along about mid-day.

Gynecologist’s office calls: will I come in next Thursday at 8:15 a.m.?

Well, of course.

Shit. Good-bye to next week’s Scottsdale Bidness Association meeting. Now have to find someone to foist the meeting-chair junk onto. One person refuses. Other cagily does not answer email.

SBA members have agreed to buy one of the pricey rosaries for our venerable and much-loved server, Cathy. She approached me last Thursday as I was on the way out of the restaurant; when I said they were $50, her face fell. So, tomorrow I have to retrieve one of the rosaries from Choir Director, and next week must find a way to get the thing to an SBA member who does plan to attend the meeting.

Shoot out the door headed for Costco, where I need to buy something, anything for tomorrow’s choir potluck.

Figure to get Whatever for the potluck, a box of dishwasher detergent tabs, and if I can find them, one of the packages of precooked mussels I saw at a different Costco last week.

Potluck: Tres Leches cake/cheesecake/whatever it is, obscene! No mussels. Substitute $moked $almon and some sourdough bread and get some more tomatoes and, having been burned on the peaches now one too many times, buy a bag of apples for breakfasts and snacks.

By the time I get out to the car, I realize my boob isn’t hurting as much as it did. Maybe the Cipro is kicking in?

Doc’s office leaves word saying it should start to work within 48 to 72 hours. It has not been 48 hours since the first dose. Boob is still hot and swollen, but slightly less swollen. Probably a fluke, but who knows? Any port in a storm…

You know…

I forgot how comfortable it is to drive without a seatbelt on.

Can’t stand to have the damn shoulder strap across my chest, so I’ve been shoving that behind me, though keeping the seat strap part connected.

Hideously dangerous, I’m sure. My antique car has no side airbags. But ohhhhh so nice to be able to drive unconstricted!

I’ve always thought people who drive without seatbelts are morons of the widest stripe. But now I can understand why they do it. It’s just soooo much better!!!!

They’re still morons. But comfortable morons.

So: a few bright spots:

• Finally got the kitchen drain running, despite being ripped off by the prior plumbing co to the tune of $271.
• Found a very nice New Plumber; finally get sink fixed.
• Dear, lovely friend gets in touch, commiserates.
• Boob may be getting at least slightly better.
• Nice gift found for business group’s loyal server.
• Potluck dish purchased (not made!)
• Appointment scored with a possible second opinion.
• Decision made to seek third opinion before allowing a mastectomy.

It’s 3 p.m. I have done exactly no work. The dogs and I are going back to bed.

The Show Goes On…

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So this morning M’hijito and I traipsed out to the Mayo again to meet with the estimable Dr. P.

She suggested trying one (1) more re-excision and then, if that fails, the recourse is mastectomy. In either event, I’ll have to have radiation therapy.

Ugh. This is hard to believe: we’ve gone from two “tiny” little lesions of less than 1 cm to at least 5 sm of mass, not all of which we’ve be able to get out, and we are now speaking seriously of a complete effing MASTECTOMY! And that is despite the fact that she insists it is not a a cancer and may never be a cancer. Maybe.

Not only that but I’ve developed some kind of swelling, which may be seroma, may be an infection, or may be some of both. I’m now on an antibiotic whose main side-effect is tendon tears. You’re not supposed to take it if you’re over 60 or if you’ve ever had tendon repair…which I had about 20 years ago after I slipped on the rocks at the bottom of Aravaipa canyon and ruptured the tendon that operates the right thumb. You can’t exercise. You shouldn’t be throwing yourself around with any physical work. This persists for three to four months after you quit taking the drug.

Lovely.

I went prepared to ask if she could manage to get a pathologist physically THERE during the next procedure so he could do the pathology studies in real time, rather than a day or two after she’s sewed me up and sent me on my way. But she’d already thought of that: she said they would do the pathology while I’m knocked out.

HOWEVER… In that case, what the pathologist does is freeze a number of slabs of the excision. But that is not ALL of the stuff they take out. Later, he’ll finish the job — meaning even if it looks like she’s managed to dig out clear margins in the frozen samples, he STILL could find inadequate margins in other parts. And if he does, I’ll have to get a mastectomy.

She was disgusted because on the preliminary report from the pathologist she was told she’d gotten clear margins out but when the final report came in, she learned otherwise. She was not at all pleased.

Oh, and to put the frosting on the cupcake? Comes in the mail, about ten minutes ago, a twenty-two hundred dollar property tax bill!

Holy shit.

$tunned

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Totally whipped this evening: busy day.

The list, partly left over from yesterday:

• Post Office: Mail checks to subcontractor, vet
• Apple Store: What’s with the iPad?Pool Dude: figure out his pay…2 days off
• Call Mayo: $2,935????
• Landscape Dude: Install anti-puppy pool fencing
• Clean bedroom closet; get rid of old shoes
• Cope with classes
• And so on, and so forth…

Yeah. That’s twenty-nine hundred and thirty-five dollah that, says the Mayo, “You are personally responsible for…”

Yeah?

Since this little horror show began, I have called the Mayo’s billing department four times — make that five, counting today’s. Every time I call over there and ask for an estimate of how much I’m going to owe, after all is said and done. They sent me an itemized statement, just for the first surgery, totaling $13,000, but I was assured that Medicare and Medigap would cover virtually all of it except 15% of the surgeon’s fee.

Every time I call over there, I get a different story. Evidently, the truth is they simply do not know.

So today I call Billing and complain that I haven’t heard a straight answer since this started, that I can’t afford another three grand for the second surgery, and that if I have to pay for yet another repeat performance, the tab is going to come to around $10,000. She suggests I call Medicare and ask them what they cover. Then I could call my Medigap insurer and ask them what they cover. And I could go through the three-inch-deep pile of paper in my file drawer and compare the checks Medicare has issued with the charges it has approved.

To date, Medicare has approved every charge that I have been informed of: to my knowledge Medicare has rejected nothing. So why, pray tell, the $2,395 bill? And does she even vaguely grasp what is involved in trying to get through to a Medicare bureaucrat? Or in what is involved in trying to translate what such a creature utters into something comprehensible that applies to real life? Has she ever talked to an insurance company factotum?

Frustrated, I dropped it and, if not forgot it at last tried to forget it.

Ran around the city. Persuaded an Apple employee to unjam the iPad. Inspected Apple MacBook Airs as potential substitute for rather useless (for my purposes) iPad. After listening to the usual unending pitch, did a little Web research. Learned the 13-inch Retina MacBook Pro may beat the 13-inch MacBook Air. Suspect 13 inches is going to be unnervingly small after all these years of 15 inches.

Fight traffic fight traffic fight traffic fight traffic drop off mail at USPS fight traffic fight traffic fight traffic

FLY IN THE DOOR FREAKING STARVED and the phone rings from the Mayo: nurse asking how I’m feeling. I’m about to explain exactly how I feel about being called by a nurse and told that my surgeon wants to see me right away but by the way she’s on vacation, out of town when the dogs go freaking BERSERK: Richard and underling here two hours ahead of schedule.

Fight crazy puppy fight crazy puppy fight crazy puppy see that Richard has brought black fencing not the off-white I asked for grab a bite to eat scarf down food try to calm crazy puppy look out and see Richard & his guy have moved the august and venerable potted ficus tree out from under the patio overhang and parked it in the scorching hot sun (108 degrees by then).

So outside, socialize with Richard and workdude socialize socialize get a frost cloth throw it over the ficus hope to god the thing isn’t fried do you KNOW how many years it’s taken to for that tree to reach its present stately size?

Make three mosquito traps, experimental. More about which later, if I live that long.

Shovel out closet. End up with large trash bag filled with worn shoes; set aside to schlep to Goodwill.

Answer student emails. Answer endless telephone calls.

Richard and underling finish building fence and gate. Arrange for Richard to build a replacement for decrepit back gate. Shovel Richard and underling out the door. Get mail as the men drive off into the distance.

Pick up envelopes from mailbox. One is from Medicare. Throw all the other envelopes into the recycling bin.

Open Medicare envelope. Find check: $1100.42.

Dayum!

Welp, it’s not good, but it’s sure better than a hit on the head. It cuts the amount the Mayo is trying to extract from $2935 to $1835. That’s a lot better than $2900 x 3 + x + y + z.

$1835 x 3 operations + ($280 doc fee not covered by Medicare x 3) = $6345
$2935 x 3 + ($280 x 3) = $9645

Not good at all. But it could be worse. $6350 is bad, but not quite as bad as almost 10 grand. And more funds may come forth from the Medigap insurer.

I do intend to ask if the Mayo will reduce or comp the cost of whatever Dr. P proposes to do next, whenever she drifts back into town. But unless the proposal is made by a lawyer, I kind of doubt that one will get very far.

A Voice of Reason

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Yesterday the boob cancer flap flared up again! And I got REALLY exercised this time.

The surgeon’s nurse called to report the new pathologist’s report. In short, once again the surgeon “didn’t get it all,” to use the old-fashioned terminology. Surgeon wants to see me again, ASAP.

Then she informed me that said surgeon has left town. The soonest I can get in to see her is next Wednesday! And again, I’ll have to trudge through godawful rush-hour traffic to the Mayo Clinic’s offices halfway to freaking Payson, endure another stress-making talk with the doctor, and watch this whole mess go from bad to worse.

Damn!

So I got pretty upset. When this woman called, I was flaked out on the bed with ice packs on my boob, and believe me, I do NOT want to go through this again!

In discussing the path report, she said that the pathologist noted that the tumor has “spread throughout the breast.” I said, “Well, then you’re saying it’s NOT a DCIS, but that it’s metastasized throughout the breast?”

She now says “We don’t use that word.” (Yeah: your doctor doesn’t call it “cancer” — she keeps saying it’s a “precancer” — but you and all your nursing colleagues and every underling who gets on the phone or ushers me up a hallway call it “cancer,” a fact that does little to engender confidence!) and that it IS a DCIS.

Uh huh. Well, to my mind a tumor that has “spread throughout the breast” is not something one would characterize as “in situ.”

This is beginning to spell “complete mastectomy” to me. And now I’m starting to freak totally out.

By mid-morning I was just beside myself. So I called Young Dr. Kildare’s office, just because the man has the deepest fund of common sense of any man I’ve ever met and I wanted a sane shoulder to cry on. He agreed to see me in the early afternoon.

My son wastes his lunch hour, poor guy, to come over and try to calm me down, but he succeeds only in making me feel he’s speaking to me as though I were a ten-year-old, which gets me even more upset. Can’t blame him: I used to do the same thing to my mother when we all thought she was a hypochondriac. That was, yea verily, while her innards were merrily filling up with columnar tumors.

On the way out the door to YDK’s office, I printed out a 2010 article summarizing and commenting on research suggesting that DCIS lesions known to be “indolent” (i.e., slow-growing or possibly not growing at all, as mine is) should a) no longer be designated “carcinomas” at all and b) should be left alone, in favor of a “watch and wait” approach.

2010, mind you. This isn’t exactly breaking news.

He was startled to see it — he said he’d never heard about it. Well, YDK is a kind of GP — basically a door-keeper who tries to guess whether patients need specialized care and who refers or doesn’t refer based on his somewhat educated opinion. He’s certainly not an oncological specialist…on the other hand, this controversy hit the news in 2010; I get my news almost exclusively from Google and The New York Times, and even I had heard about it back then. So it was sorta surprising. Anyway, he said he would read the article and look up the actual science, so that was nice.

By the time I got to his place, the Mayo had faxed the pathologist’s report over to him. So he sat down and translated it, as follows:

The new excision showed the carcinoma coming right up to the inked margins, meaning she did not remove enough papilloma-free tissue to leave any margin of normal flesh. The term “metastasize” is used only to designate cancer that has spread outside of the organ where it originated. If it has not left the organ, it is not said to have metastasized. Where the pathologist says “spread throughout the breast,” YDK believes he means the tumor has grown large enough to fill most of the breast. The good news, though, is that there still is no sign of any invasive cancer.

Well, of course, this raises as many questions as it answers. For example, if the tumor is that large, why would that not have been visible on the umpty-umpteen mammograms and sonograms I’ve been subjected to? If it’s that large, why would it not be visible to the surgeon’s naked eye? And how many more of these time-sucking, stress-inducing, hair-pulling, life-disrupting, painful surgeries am I going to have to endure????? More to the point, are we looking at a complete mastectomy here? And of course, that’s all before we bring up the question of why, if as early as 2010 experts felt it was safe to simply leave a low-grade, indolent item in place and watch it, why we’re doing all this in the first place?

Arrrrrrrgghhhhhhhhhhhhhhh!

Well, he said that no matter what, at this point the best thing to do is to get the abnormal cells OUT, since what’s begun is begun and it would be unwise to leave the job unfinished. He did think a full mastectomy is entirely possible, but, said he, so what? Better to be rid of the boob than to keep cells that may or may not turn into invasive cancer. It will not, he observed, be the end of the world. He said he believes this is the best approach because, given my overall health, it’s likely I’ll live at least to 85 or 90. Since I’m just pushing 70 now, that means that even a very slow-growing entity could cause some very serious problems or death before a heart attack, stroke, or other issue carries me off.

Then he said, “Look, what you really want to know is how to bring a stop to the repeated surgeries, right?”

Yup, yup!

“So here’s what you’re gonna do, and you’re gonna use these words: When you see her, say to her ‘If we are going to do another surgery, I want that to be the last one. What can we do to make that happen?'” That, he believed, would elicit an effective response.

At any rate, a half-hour or forty minutes with YDK calmed me down some. But I am still not a happy camper!

Another Country Heard From…

And to complicate matters, SDXB’s daughter, an RN who has been a military nurse for decades, e-mailed her advice from Germany:

There is no excuse for a doctor not to get a mass and have the margins clearly defined on the first go, let alone the second try.  Did he pick any nodes to determine if the cancer has spread to the lymphatic system?  Did he determine the cancer type?  Did he grade the cancer?  If she doesn’t know the answers to these questions then she is not informed.  Also, Every time he is there fucking around and cutting on her he is stirring up the cancer and increasing the chance he is going to spread it. It takes one seed to get into her blood stream through her lymphatic system to become metastatic cancer,   Fire his ass and get her PCM to write a referral to MD Anderson.  You have a great MD Anderson in Phoenix.  This is a no brainer.  Why would you go to McDonalds if you want French food.  Yes, they serve French Fries, but they aren’t French.  This guy may call himself an Oncologist, but he sure isn’t acting like one.  I am surprised they haven’t removed both breasts.  Seriously.  With her family history…as her friend I would be encouraging her to get someone better. .  See list below:

We know that it’s an encapsulated papillary carcinoma, DCIS. So far, no evidence of invasive cancer has appeared in any of the path studies. When we believed we were looking at two lesions, the surgeon assigned a grade of 0. After excision revealed that it was really one entity, it was upgraded; because it’s still noninvasive, we’re at grade 1. Because EPCs are extremely indolent, it was decided that sentinal node biopsy is unnecessary, and so no; no nodes have been removed & biopsied. I’ve thought about MD Anderson…on the other hand, the Mayo isn’t exactly McDonald’s. 😀  I have no family history of breast cancer, ovarian cancer, colon cancer, or BRCA mutation; my mother died of what apparently was a gastric cancer, probably related to her 6-pack-a-day smoking habit. There’s no indication of any neoplasms in the other breast, and the chance that a another papillary carcinoma will arise in that one is set at .3%. In the first one, though…hmmmm…

1.  Get all medical records copied and sent to MD Anderson.  Their fax number is online. (Just call each doctors office and give them MD Anderson’s fax number). Give them a suspense date of 3 working days. Stay on their ass and make sure they comply.

2. She needs the hard copies or discs of all X-rays, mammos, ultrasounds, and labs done on her breast.  Gather them together…again giving each place a suspense of 3 days and hand carry or overnight them.  Some offices will do this for you.  Stay on them and make sure they comply.

3.  Have primary doctor write a referral to MD Anderson and fax it over to them.  This has to happen before they will see her so definitely push this to the max.  Be concerned if her doctor says..”.I just don’t think we are there yet.”  That just means you have probably saved your friends life.  He doesn’t know what he is doing.  Tell him you just want a second opinion.  Lie.  Just get the referral.

4.  On line there is a self referral form…the patient fills it out.  You explain what is going on…the basic history of her disease.  Your family history and past medical history. They will want to know pawn at her doctor has done up to this point and why she wants to go to MD Anderson.

After all this is done, the whole team at MD Anderson will review the chart, tests and her letter and determine if they can help her.  I got Joe Senior to go for his prostate cancer.  He was amazed at the treatment he received.  Here is the wonderful thing about MD Anderson…you don’t lose control of what is happening.  You are part of the team deciding how things are going to go.  You have the best doctors finding out the best plan of treatment, nurses finding out the best diet to support you through treatment, pain specialist to ensure your quality of life is not affected by the drugs, and a pharmacist reviewing all treatment to ensure that no medication interactions happen and chemo doses are correct, and psychiatrists to ensure that depression doesn’t kick in and your outlook is positive.  But, you have the final say in all treatments.  There is no judgement.  And, for once in a lifetime, you will be treated like a person in a doctors office.

Get her into MD Anderson now.  Seriously.

To coin a phrase: Holy shit!