Health care

Okay, so today I went back to consult with my old gynecologist, who’s now at St. Joe’s. This is the hospital I decided NOT to be treated at for the alleged “cancer” (their pathologist’s term) that was discovered by their mammography unit, not because I don’t love my doctor but because some years ago I had a very negative experience there.

It’s beginning to appear that maybe I should’ve overlooked the fact that their front office ER staff damn near killed me through their neglect…

Patiently, Dr. C, as we’ll call her, listened to my now epic-length story.

The part I haven’t updated here happened yesterday. Yesterday afternoon I visited Dr. P., the Mayo surgeon, who said that I did not have a breast infection, and that the swelling and redness were caused by a hematoma. I said…well, then, how do you explain the 100-degree temperature? She shrugged.

She now has me scheduled for a THIRD lump excision on Monday. If that fails (as you can be sure it will, the way things are going), then the next step is a mastectomy. And she said to quit taking the cephalexin.

Uh huh. Now a little alarm was going off: if she didn’t think it was an infection, why did she prescribe Cipro, a very powerful and potentially dangerous drug that is not supposed to be given to people over the age of 60? In fact, since I’m pushing 70 and am known to be sensitive to medications in general, why did she prescribe Cipro at all?

I thought, y’know…I need to talk to somebody else. So today it was off to Dr. C.

Dr. C. said she did not believe the swelling, redness, pain, and heat are signs of a hematoma; that they are symptoms of a breast infection. She also remarked that she would not want to cut into the breast in its current state. Since the cephalexin (the drug I ended up on after the Cipro worked some baleful effects) seemed to be working, I should get back on it. That advice was off the record, she added: “I don’t want to get in the middle of another doctor’s surgery.”

Right. Fortunately, I’ve only missed two doses since seeing Dr. P at the Mayo yesterday.

Dr. C referred me to two of her colleagues, a medical oncologist and a surgeon. She advised me to delay the Monday surgery until after I can talk to them.

So now I have an appointment with the new surgeon on Tuesday and the venerable medical oncologist on Wednesday.

Oh God! What a horror show this has turned into. There’s nothing I hate more than going to doctors. Now we’re looking at going through this on and on and on and on. I feel like I’ve been sucked into a vortex that I can’t get out of.

Dr. C. was shocked when I told her Dr. P. had given me a choice, which I could exercise this afternoon after talking to the radiation oncologist. If I want to bring a quicker stop to the surgery merry-go-round, I can just ask her to do a mastectomy on Monday.

Dr. C said, “Are you sure you want to do that?”

I said, “I just want this to stop. I can’t stand any more of it. One of the women at the choir had seven surgeries by the time they finally did a mastectomy! All I want is to make it stop.”

Dr. C. said I might want to consider reconstruction after all. I said I’m not looking for a man, there’s not a man on this planet who will give me a second look, and besides, at this age, all the good men are either married or gay. She laughed and said well, that may be true, but in fact a breast is an essential part of being a woman. It’s not a light thing to just take it off. I pointed out that if the growth is as large as Dr. P says it is, the likelihood of a recurrence is much higher, and I would not like to have future surgeries complicated by the presence of a reconstruction. She agreed that would not be good.

Moving on, then…

Y’know, one of these new doc’s offices asked me how far back they should ask for my records. I looked at my calendar: it goes back to the end of June! My perception that this mess has wrecked my entire summer is right on.

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.

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.

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!