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Health care

Another Day, Another Doctor…

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So this morning came the appointment with the oncologist favored by my gynecologist.

You may recall that not one but two docs — my GP and my gynecologist — so worried about my insecurities over the ongoing (painful, disruptive, miserable!!!) treatment of NOT-a-breast-cancer that they felt impelled to refer me to the medical oncologists of their choice.

Young Dr. Kildare’s choice, visited last week, was perhaps not the God’s Greatest Gift to Diseased Womankind.

Today I visited Sainted Gynecologist’s guy, and he proved to be a great deal better.

First, he could figure out the difference between DCIS and invasive cancer. That was a good sign.

Second, this guy was fully, completely, UTTERLY up to date on the current research. Having made myself almost up-to-date on said current research, I was impressed. Oh, no. I was more than impressed. I was delighted and astonished. The man actually knew what he was talking about. A God’s miracle.

Third, despite being a high-powered medical doctor, the guy possessed an underlay of common sense. This is not a man given to flying off the handle in the various hysterical ways that some doctors  are wont (I’m sure you know who they are because you have visited some of them).

Fourth: being of an age comparable to mine, he knew my (now retired) internist at the Mayo, he knew the redoubtable Dr. Packaj and was similarly awed and worshipful of her, he knew the venerable gynecologist whose practice Present Gynecologist purchased (the guy was famed as the finest OB-GYN in the city, back the the day, and all the local doctors and — equally significantly — lawyers sent their wives and daughters to him), he knew Present Gynecologist well, and he did not know Young Dr. Kildare (YDK’s defining characteristic being “young,” after all) but nevertheless did not even flinch when I expressed a certain distrust of John C. Lincoln with the words “this is Arizona, after all.” All of these are signs of a medical doctor with a brain who is savvy in the ways of a large small town that has been fed too much Monsanto-style fertilizer.

(It’s another story…ask me some day and I will tell you, my children.)

Fifth, he did not treat me like a nine-year-old.

Sixth, he answered all my questions in ways that made sense. To do so, he spent well over 70 minutes with me.

Medicare may not pay for this antic, but if I have to pay for it out of pocket, I will do so cheerfully. The guy was ever so much worth it.

To make a long story short, this is what I now think:

On the repeated excision attempts vs. the proposal to cut to the chase and just get the damn mastectomy over with:

It’s worth letting Dr. P take another shot at getting the abnormal cells out of there. Although her chances aren’t good, they’re not hopeless, either. If she succeeds, bully for her — she’ll be proven right. And bully for me — I’ll still have part of a boob left. If she fails, the world will not end: a mastectomy will guarantee no return of the Evil Entity and will mean I won’t have to have radiation therapy.

On the side effects of radiation therapy:

Knock off worrying about that. It’s not great, but it’s not especially horrible either.

On tamoxifen:

Nix. Don’t take that.

On reconstruction:

Stand in front of the mirror and practice repeating this: NNNNN OOOOOO, NNNNN OOOOOO, NNNNN OOOOOO, NNNNN OOOOOO, NNNNN OOOOOO, NNNNN OOOOOO…..

Put the two sounds together and practice that a few times: NO…NO…NO…NO…

Utter this sound to Dr. P.

Refuse to sign any papers permitting anyone to do any reconstructive surgery.

Voilà. Problem solved.

On the advisability of declining reconstructive surgery:

His patients who have had implants removed or who have refused reconstruction report that they’re happy with their decision. But if I feel I am not a complete human being without a blob of flesh or fake flesh hanging from my chest, one can have this procedure done at any time in the future.

On recovery time from simple mastectomy:

Probably three or four weeks. Maybe a little longer to get over the fatigue. No point in working yourself into a state of hysteria over that.

On finding someone in town who makes custom prostheses:

Doesn’t know of anyone and believes no such company exists in Phoenix. Find a maker in some place where you’d like to take a medical vacation.

Okay, okay, he didn’t say that last thing. But that was the implication. No one in Arizona that we know of is making light-weight, comfortable custom prostheses. To get measured for one, patients have to travel to other states.

So it goes…

Annals of the Floored and Flabbergasted: Back Office Staff Edition

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This morning I get on the phone to an assistant in the gynecologist’s office, to whom I’m trying to explain, for the THIRD time today (not to her, but to two other folks) that because it looks like I’m headed for a mastectomy, a medical oncologist advised me to consult with a plastic surgeon before that comes to pass,  and so I would like a referral to a plastic surgeon who knows what s/he’s doing.

She doesn’t quite follow. It’s a complex series of thoughts, after all. So I explain (again) that I need to talk to a plastic surgeon before I get scheduled for a probable mastectomy.

Says she:

“Is that in the pelvic area?”

{thought balloon: you ARE one of my students, aren’t you?}

“No, honey, mastectomy has to do with your breasts. They’re going to chop off one of my boobs.”

“Oh. How do you spell that?”

Ha haaaa! Is that hilarious or not?  And just think how hilarious it is that medical offices are populated with folks like this, ready to take care of your every health need…

Breast “Cancer” or Not: Another Amazing Adventure in Medical Never-Never Land

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Okay, so after I had arranged an appointment with the medical oncologist my gynecologist wants me to see for a second opinion about the advisability of further surgical attempts at a successful lumpectomy, Young Dr. Kildare became concerned enough that he unilaterally scheduled an appointment for me with his choice of oncologists.

Interesting. I decided to take a chance that I will have to pay for one or both of these worthies out of pocket — surely there’s a limit to what Medicare will cover — just to see what TWO of them would say.

Yesterday I spoke with YDK’s guy.

He seemed like a very nice man — certainly has a thriving practice: there must have been 20 cancer victims sitting around the waiting room. He seemed very smart, very empathetic, and open to answering all my questions, which are manifold.

So as he’s talking, he says something that really drops my jaw. And he says it more than once.

He says that ALL incidences of DCIS turn into cancer. Therefore what remains in my boob must be removed, and if I were his wife, he would recommend going straight to a mastectomy.

Well. There are several good reasons to turn directly to a mastectomy without trying again for a successful lumpectomy. But “all incidences of DCIS turn into cancer” ain’t one of them.

It simply is not true.

It is not true that all DCIS turns into invasive cancer. By 2010, M.D. Anderson researchers were estimating that 40% to 50% do so — meaning that even then, they thought 50% to 60% do not do so. More recent estimates peg the conversion figures at closer to 15% to 20%.

So that was unnerving: a specialist in breast cancer treating God only knows how many people who directly contradicts the facts. And contradicting my surgeon, my gynecologist, the Mayo’s medical oncologist, and the Mayo’s radiation oncologist, all of whom seem to have managed to get their facts right.

He also interpreted the records from the Mayo as saying the surgeon had found two growths in the boob: the EPC*, which he says she has removed, and a DCIS, which she has not yet fully excised. That’s not what she (or anyone else) has told me: the EPC is the DCIS. So, either the Mayo team is obfuscating or this guy has no idea what he’s talking about.

Wow! This is one scary trip through the medical funhouse!

*EPC: “Encapsulated papillary carcinoma”: a rare type of DCIS, a condition thought to be preliminary to development of breast cancer.

Of Late…

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Haven’t posted for a day or two. Busy couple of days and then last night the damn router went down again and this time stayed down all night. GOTTA get a new router. One of these days…

Meanwhile, a number of developments, all of them positive for a change!

The Mayo surgeon had to loosen her clutches long enough for me to get a grip on my wits, at least in a perfunctory way. As you’ll recall, on the weekend before the last planned surgery, scheduled for a Monday, a convenient case of bronchitis led the anaesthesiologist to intone,”It would be foolish to proceed,” frustrating the surgeon no end. The next fun procedure was scheduled for the 15th of this month.

Subsequently, the surgeon erred in forgetting to have the Mayo’s scheduling department reserve an OR for that date. So the soonest she can try again will not be until after she gets back from vacation, toward the end of this month. That gives me time to get to another doctor at another institution to try to get some fresh insight, and to gather enough strength to put up a fight. Somehow I’ve got to bring a stop to the present cascade of disasters; whether I can remains to be seen, but at least I’m beginning to make out a vague pathway toward that goal.

This is particularly good because a new challenge has developed: As I have begged the staff to just do the goddamn mastectomy and stop torturing me with (presumably very profitable) procedure after procedure after procedure, they have begun to pressure me to get reconstructive surgery. I do not want reconstruction, for two reasons.

1) I’m not in the market for a man, and at my age no one looks at my boobs and so no one is going to notice whether I’m a little lopsided or not. For that matter, at my age no one sees a woman at all. When strangers are staring in your direction, they’re actually looking right through you. What they see is the background behind you.

2) More to the point, especially for older women, breast reconstruction is more complications and more surgery waiting to happen. The autologous procedures now in vogue, where they gouge chunks of flesh out of your back, belly, butt, or thigh and slap them on your chest, are esthetically unsatisfactory IMHO, cause still more surgical wounds for you to have to recover from, weaken the muscles in those areas, and can leave you with chronic back pain, weakness, hernia, and the unpleasant. disabling manifestations of upper quadrant disorder. As for implants: silicone or saline, they have an expected lifetime of about ten years, at which time you get to enjoy still more surgery to have the damn thing removed or replaced.

When I told WonderSurgeon that I do not want reconstruction, she told me I need to “think about it.” In other words, I’m a child who doesn’t have good sense.

Guess which one is fake.

One of my friends chose to go flat after a double mastectomy; she said she never regretted it, and she looked just fine. Obviously, if one side is flat and the other is not, that’s a little more problematic. However, you can get custom-made prosthetics that are a great deal more convincing and comfortable than fake reconstructed boobs (if you’re feeling strong, go to The Scar Project, where you can see artist-quality images that show women with and without reconstruction — warning: this is graphic).

Such a large  contingent of women has decided to go breast-free that there’s even an organization representing them. Interestingly, many of these women describe similar pressure from their medical teams. Apparently people are so convinced that every woman’s self-image is so inextricably invested in her boobs that a woman must be crazy if she chooses not to go through the tortures of the damned for the sake of having a lump sticking out of her chest.

So: I need some reinforcements to put up a fight on this front.

I called to make an appointment with a medical oncologist at St. Joe’s that my gynecologist, who unwittingly plunged me into this mess, has been trying to get me to see. He also has been out of town, and so on the last attempt to get together with him, his staff couldn’t shoehorn me in before the the 15th. Called again, they managed to set up a meeting for the 20th. Hallelujah!  That means I’ll be able to talk with the guy before the Mayo doc can cut me up again and before the craziness makes another spin around the drain.  I don’t know whether he’ll provide enough moral support for me to hold my own, but everyone who knows the man says he’s eminently rational.

So that may be a dim light visible through the black fog.

Yesterday morning the damnedest thing happened. My single all-time deepest-pocketed client, Scott Flansburg — the man who made it possible for me to pay off the mortgage in one fell swoop — has hired a new business manager. He’s looking to kick his business plan up a notch, and he wants someone, namely me, to write new products for him and the like. Said bidness manager tracked me down, how I do not know — probably through LinkedIn — and asked if I would be interested in working with them. They want to expand into e-publications.

Lo! What should The Copyeditor’s Desk be into but e-pubs! I’ve got a slew of formatters, illustrators, and designers who can hire on to help him out, and of course I wrote the book that earned Scott $1.5 million in the first year after publication and $1 million the following year.

Heh. When we say “things are looking up,” we speak in cosmic terms.

Meanwhile, I have two clients who are just wrapping up their books. Both of these guys  have uttered the words “…and how do I market this thing?” Flansburg is a wily sort of a gent, and you can be pretty sure that he would not hire a marketing agent, which is what this guy is, unless the guy had a decent track record. So this is promising: we just may be able to do some bidness here!

If the guy can sell books (and authors), The Copyeditor’s Desk may soon have two happy customers. And that is always good. Very, very good.

And finally, in the God seems to have gotten over Her tiff at me department: I took it into my head to buy a large Talavera-style garden pot for my beloved shady deck. Purchased anywhere north of central Mexico, these things are absurdly expensive, and the place where I chose to buy, Whitfill’s Nursery, is famed for charging through the wazoo for everything. So I walk in there and find the desired vessel, and on my way out my eyeballs land on another design. The actual price of these monsters is $59.99, but someone has scribbled $29.99 on the one I happen to spot.

On close inspection, nothing seems to be wrong with it. Apparently some underling carelessly mispriced it. The kid at the cash register didn’t even blink…so I walked outta there with a BIG, beautiful, gaudy planter for half price!

Obviously, an omen.

TalaveraPlanter

 

Resuscitating My Life: A Pair of Überlists

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Okay, enough is enough. After a week of lying in bed, I have got to try to drag myself back into the land of the living. The plan is to try to resuscitate my life by drafting two overarching überlists, one for managing the health situation and the other for managing the dog predicament, should I decide to keep Ruby.

Today, a plan for restoring my health to something at least vaguely tolerable. Tomorrow: how to deal with the dog problem.

Health Restoration To-Do’s

1. Draw a line at which the “it’s not a cancer” torture must stop.

• Contact Dr. Laura Esserman at UCSF and ask for a consultation. Try to get answers to these questions:

• Given that there is no invasive cancer and there never has been a cancer, and given that an EPC is so indolent that it was never likely to have developed into a cancer and that only two cases of metastasis from an EPC have ever been recorded, is radiation really necessary?

• Is tamoxifen treatment really necessary?

• Instead of subjecting myself to a third re-excision — a fourth surgery in what is likely a futile quest — should I ask to have the breast amputated now instead of going after a successful excision + radiation + tamoxifen?

• Make decisions as possible and reasonable in light of any answers obtained there

2. Try to return to some semblance of normalcy

• Exercise:

• One walk in a.m. or p.m. without dog
• One walk in p.m. or a.m. with dog

• Get back to healthy eating

• Make xergis so as to gag down yogurt to counteract antibiotic damage
• Restock veggies and fruits, and eat the damn things!
• Cut up the spoiling apples and refrigerate them so they can be cooked for breakfast
• Consume oatmeal for breakfast or lunch to get gut working again

• Combat fatigue and depression

• Nap in afternoon to alleviate exhaustion
• Get back to the company of humans:
…..Go to choir!
…..Go to SBA!
• Have Shane style hair and come up with attractive up-do
• Get a top-quality body cream and massage hands, feet, and nails daily
• Oil skin all over once or twice a day

2. Fix the front bathroom so the shower in there can be used until this sh!t is over

• Learn how to jimmy showerhead to remove flow restrictor; install
• Remove bathroom decor for the duration

3. Clean out the lingerie drawer and organize so finding iron maidens and bras is no longer a headache

4. Buy a new heating pad; make another cover.

• Treat boob with heat and ice three times a day

5. Decide what help to retain

• Cleaning lady? Pool guy? Yard guy?
• Figure out how on earth to pay them

6. Try to get back to work

• Figure out how to deal with 235 class that starts five days after next surgical circus
• Figure out what to do with Pete’s project or who to farm it out to, and for how much
• Work on P&S website
• If Jesse can’t or won’t help make sense of this, move it to BlueHost
• In either event, move Writers P&S off WordPress.com at the earliest possible moment

Gratitude(?)

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Over at A Gai Shan Life, Revanche is climbing back from her recent shocking loss and, I suppose, from the equally shocking (potentially) good news. Resonating off a theme launched by eemusings, she lists several things she’s grateful for and asks readers to join in.

Just now, I must say, I’m finding it difficult to evince much gratitude.

The modern medicine that recently has made Revanche’s life more comfortable has disrupted my life Big Time. I’ve been cut up, half-healed, infected, bloated with hematoma, ruptured and bleeding, in pain, sickened by drugs, and waiting to be cut up again since the end of June, and whether Dr. P manages to “get it all” on her next fishing expedition or whether she has to lob the boob off altogether, the nightmare is not going to end much before the middle of December. If the surgery ends with success (heh…) on October 15, I will then have to heal up again — a month or so — and then be subjected to at least three or four weeks of radiation therapy, which will be followed by some weeks of debilitating fatigue. And God only knows how long it will take to get over that!

The longer the mess goes on, the more evident it becomes that the disruption, pain, and distress were utterly unnecessary, the result of massive overtreatment of women’s breast issues institutionalized within our  healthcare system. As each day passes, I learn how many more women have gone through some or all of this ordeal. The number is huge, many more than the one in eight who are said to develop breast cancer over the course of a lifetime. That is because women who do not have and probably will never have breast cancer are being subjected to the same treatment they would get if they did have cancer: mutilating surgeries, risk-fraught radiation therapy, and chemotherapy, all in the name of prophylaxis.

Sorry. I don’t feel grateful for that at all. Yes, I’m glad I don’t have cancer, but I very much doubt that an extremely indolent growth that, if you believe Dr. P on the rate at which these things expand, has resided harmlessly in my body for a good ten or fifteen years, would ever have developed into cancer. And if it did, it could have been treated then, in exactly the same way it’s being treated now — only for an actual reason.

I’m grateful this happened while the stock market is up, so I can take money out of retirement savings without totally raping what little remains of my future. Like unto “grateful it isn’t cancer when it clearly was not cancer, is not cancer, and probably never would have become cancer,” that’s a pretty piss-poor target of gratitude. Gee, I’m so glad I had plenty of money to be taken away from me pointlessly by doctors, hospitals, cancer centers, household help, pool help, yard help, dog help.

I’m grateful my business partner was here to cover for me. I’d have lost my shirt three ways from Sunday if she weren’t picking up my work. As it is, I’m probably going to lose one lucrative account, because that project simply cannot be done without my contribution, and I’m too sick to do it. The plan to expand The Copyeditor’s Desk into indie publishing is down in flames. I can’t even get my act together to build the website Jesse established for it, much less actually do any work.

I’m grateful my son has kindly taken uncountable hours of time off work to drag me back and forth to surgery after surgery. But I’m not the slightest bit grateful that I had to ask him to do that, and that I have no other resource to take the pressure off him.

I’m grateful that the corgi breeder who charged me $1,200 for Ruby will probably let me return her, now that I’m too sick to take care of her and that she’s decided to turn Cassie into a doormat. No refund, of course; nor will there be refunds for the astonishing amounts of cash outlay on vet bills, special UTI dog food, dog gates, dog crates, dog leashes, dog collars, dog harness, the wrought-iron gate to keep her out of the pool, and on and on and on and on. I’m grateful my son has taken her off my hands for a couple of weeks. I’m not grateful at all that I’m going to have to take her back where she will be kenneled for heaven knows how long, and that I probably would have had to do so even if the boob fiasco had never happened.

I’m grateful the weather is cooling a little. And that there are no disclaimers to that one.

So… Gratitude? Mixed. Very mixed. Tepid, one might say.

This poor youngling for whom we do sing Bye, bye, lully, lullay.
This poor youngling for whom we do sing
Bye, bye, lully, lullay.