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.
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.
I’m so glad things are going better for you, health-wise and business-wise. Your current surgeon just doesn’t seem to have your best interests at heart.
You got a sweet deal on that planter. Congrats!
That is exactly the question I want to ask the new oncologist.
What we’re looking at here is doctors, understandably, following set standards of care. First, that makes sense from a business standpoint as well as from a healthcare standpoint — better to follow a protocol than to have everybody in the country going off in 18 berjillion directions. Second, it makes sense from a malpractice standpoint: if a doctor can say “I did what is accepted practice and here’s the proof,” then obviously if (make that “when” — complications are very common) something goes wrong, she or he will have a strong defense.
The problem is, any of these things CAN turn into cancer, and we do not know which ones will or why. So if part of it is left in my body — especially after it’s been cut up and spread around, for godsake! — it can indeed morph into an invasive cancer.
Unfortunately, the national standard (so the Mayo oncologist says) is not to do radiation unless clear margins have been obtained. To my mind, if it’s true that radiation kills off abnormal cells (to say nothing of your normal cells…), then it would make sense to do radiation on whatever is left. Try to find someone who’ll do it, though!
I hope you are also seriously considering the option of leaving the poor breast alone at this point. If it never was cancer and probably never will be cancer why cut the poor thing off?
That is exactly the question I want to ask the new oncologist.
What we’re looking at here is doctors, understandably, following set standards of care. First, that makes sense from a business standpoint as well as from a healthcare standpoint — better to follow a protocol than to have everybody in the country going off in 18 berjillion directions. Second, it makes sense from a malpractice standpoint: if a doctor can say “I did what is accepted practice and here’s the proof,” then obviously if (make that “when” — complications are very common) something goes wrong, she or he will have a strong defense.
The problem is, any of these things CAN turn into cancer, and we do not know which ones will or why. So if part of it is left in my body — especially after it’s been cut up and spread around, for godsake! — it can indeed morph into an invasive cancer.
Unfortunately, the national standard (so the Mayo oncologist says) is not to do radiation unless clear margins have been obtained. To my mind, if it’s true that radiation kills off abnormal cells (to say nothing of your normal cells…), then it would make sense to do radiation on whatever is left. Try to find someone who’ll do it, though!
I’m not sure such an option exists. Well…obviously if I set my heels in the sand and just refuse to go near an OR, this comes to a stop. But I’m not suicidal.
What no one told me (and apparently in general no one tells women when they embark on this journal) is that huge numbers of DCIS patients are subjected to repeat surgeries. Some 25% of lumpectomies result in re-excision (http://www.breastcancer.org/research-news/20140402). One woman I know had NINE surgeries by the time they arrived at lobbing off her boob.
Honestly, I still don’t get this. I thought the surgeon was the one who kept insisting it was definitely NOT cancer. Why does she keep cutting?
Good question.
Doctors feel that all DCIS needs to be removed, because some fraction of all DCIS will convert to invasive cancer. They do not know whichDCIS entities will do that and which will just sit there and do nothing. Because they can’t tell, they want to pull them all out.
Once they start that, though, they have some standards by which they decide they’ve “got it all,” as it were. DCIS has outer edges called margins. The entire thing, with all its margins all the way around, must be removed. To tell whether they’ve succeeded, a pathologist dyes the flesh that has been removed. This allows her or him to see the tumor cells under a microscope and to differentiate them from normal cells. The outside edge of the lesion absorbs this dye; the margin (the edge of normal cells sliced away with the lesion) apparently does not.
Older standards wanted a substantial margin of normal cells all the way around the dyed border of the tumor. Newer standards now say that if the dyed border comes right up to the edge of the specimen, that is OK — no differences in recurrence rates or survival rates have been found.
Now, I can understand the idea that all cancer begins as DCIS but not all DCIS turns into cancer. I can understand the idea that we have no way of knowing which DCIS will remain “indolent” (i.e., harmless) and which will morph into invasive cancer.
But here’s my problem with my particular case: what they found in my boob is a VERY rare variety of lesion called an encapsulated papillary carcinoma (EPC). Fewer than .5% of breast cancers are EPC’s. And EPC’s are extremely indolent. Although occasionally, for reasons unknown, one will turn into cancer, they hardly ever do, and the cancers that do ensue are not very aggressive. In all the medical literature, only TWO (2) cases of an EPC cancer are recorded as having metasticized (i.e., moved out of the breast). And that is one of several reasons I feel I’m being overtreated.
I suspect treatment, when it’s warranted, is not a one-size-fits-all thing, but that seems to be what the medical establishment has to offer, at least at this time.
Glad to hear things are looking up – hoping this is a continuing season!
Please, lets not forget surgeons – cut. That is, in general, their mind set and it is what they are, hopefully, good at. Unfortunately, that is not always the best path for every patient. Further, unfortunately, many patients have had surgery which spread cancer cells, so I’d guess many react to those statistics, no matter how realistic.
We have a friend who had breast cancer twice, once in each breast. Her husband had passed away from cancer between bouts. She had both breasts removed at the 2nd bout. It would bother me to have a breast removed, but I believe that people should do what is best for them.
I am hoping that you get in to the St Joe oncologist and he has good news for you. I further hope for you, that you – who I view as having a strong sense of self- can stand up to the doctor who did your surgery and somehow did not get all of what she was trying for.
Good luck and good wishes from me to you.
The endless series of surgical procedures, each of which poses a number of very unpleasant risks such as lymphedema and nerve damage, requires repeatedly knocking you out with heavy-duty anaesthetics, which themselves pose a number of risks, some of which are life-threatening. One surgery is quite hideous enough, thank you. I’m looking at FIVE, if they lob off the boob; and many, many unhappy returns if they try to construct a fake boob in its place.
The prospect of having a breast amputated indeed does bother me very much. But nowhere near as much as a future full of repeat visits to the OR. I’d rather die than go through this indefinitely…and that is not an exaggeration.
Wow! That’s some great news!
Sounds like karma– lots of bad luck means you’re owed some good luck.
My mom got breast reconstructive surgery when she got breast cancer. She’d had a lumpectomy in her 20s, so after surgery her breasts were the same size for the first time in decades. She said her surgeon was a true artiste. The recovery was pretty awful though.
I’m glad it worked out OK for her.
I’m told “pretty awful” is the operative term. I’ve had enough awful, thanks. Think I’d rather be flat — or concave, as is actually the case.