Coffee heat rising

Angst

Decision Taken — At Last!

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Blew the entire darned morning at the Mayo today, talking with a new radiation oncologist. I must say, she was very impressive — almost as impressive as WonderSurgeon.

She said it was within the realm of possibility to treat the boob with radiation and aromatase inhibitors. However, said she: “If it were me, I’d choose a mastectomy.”

Once again the decision is up to me. And the truth is, I’d just as soon have it off. Apparently WonderSurgeon has the idea that I’d prefer to keep the boob come what may. That’s not at all true.

I’ve been ambivalent to the ultimate degree of ambivalence. On the one hand, I would very much like NOT to have any more surgery. I do not want reconstruction because that looks like an invitation to more complications and more surgery; if we’re going to do this, I’d like to keep it as simple as possible and just effin’ get it over with. On the other, if mastectomy is not really necessary, naturally I’d just as soon keep my body intact. Especially now that WonderSurgeon magically restored the diseased boob to its former splendor…or even better.

And, as our venerable reader George likes to say, “on the other paw…” I’d just as soon do without radiation therapy and five years on a drug with potentially baleful side effects.

The choices are these:

a) leave the boob on, subject yourself to a course of radiation whose worst side effects will start to surface nine years from now and can continue to arise over the next thirty years, plus five years on an unpleasant drug, and still run the risk of invasive cancer; or
b) remove the boob, reduce the risk of invasive cancer to something under 1 percent, and moot the dangerous therapies.

I mean, really: which of these makes sense?

Yup…the answer is behind Door B.

Asked her about the potential side effects of the radiation treatment she proposed…

Bone damage? Not so much with modern treatments: an occasional fractured rib
Soft-tissue cancers? Definitely a potential
Lung cancer? Probably not; again, much less probability with newer technology
Lung damage? Scarring in a small part of a lower lobe. This can lead to pneumonitis, which is usually minor but can become life-threatening. It is treated with massive doses of Prednisone.
Lymphedema? Low risk
Fibrosis? Low risk
Hypothyroidism? Didn’t get a comment
Brachial plexopathy? Not so much
Leukemia or myelodysplastic syndrome? Very low incidence

Translations: any of these things is a possibility, although most of them pose fairly low risk.

Pneumonitis and new cancers are probably the most likely of the unpleasant side effects. I’ve had prednisone, in very low doses…and I do NOT want any more of it, thank you. Its aftereffects appear weeks or months after you’ve taken it, and they’re very unpleasant, indeed. I wouldn’t take it unless I were at risk of dying, and I wouldn’t put myself at that risk for the sake of keeping a boob hanging on my chest.

And one “not-a-cancer” has been quite traumatic enough, thank you. Don’t think I need to enjoy a real cancer sometime — anytime — in the future.

This has been going since last June! My life has been turned upside down; everything I’d planned to do business-wise and personally has been disrupted, it’s drained my checking account, the whole thing has me teetering on the edge of stark-raving-CRAZY, and I WANT IT TO STOP!

If chopping off the boob will make is stop, by all means let’s get on with it at the earliest possible moment.

For the nonce, though, I have to get back to work.

Later! 🙂

A Discovery(!) and an Insight(?)

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Okay, so late Friday, the St. Joe’s oncologist called me back and listened to my sadly puzzled story about the ambiguities incidental to the latest boob surgery. I told him that Dr. P (aka WonderSurgeon) thinks the Mayo’s staff might consider radiation and tamoxifen despite her considered opinion that the 2014 standards for “clear” margins don’t suffice.

He said, “I don’t think you should take tamoxifen. There’s a better alternative for older women.” Turns out that if you’re post-menopausal, aromatase inhibitors work better at preventing recurrences in the guilty boob, are more effective at suppressing new growths in the other boob, and  have fewer dangerous side effects.

Tamoxifen is a dangerous drug. It has some very nasty side effects. Aromatase inhibitors also cause some conditions you’d prefer not to have, but fewer of ’em. Videlicet:

SideEffects

None of these are anything you would willingly bring on yourself. But then, neither is invasive breast cancer…

I’ve already got osteoporosis and don’t need a drug to make it worse. To control this effect, you have to take Drano In A Pill, aka Fosamax. It also has nasty side effects, one of them is to eat into your gut. Doesn’t that sound jolly?

With the bone thinning, I take my chances rather than taking that stuff.

So: aromatase inhibitors… My hair, which has yet to turn gray, is damned spectacular and I do not relish “thinning.” I keep the high blood pressure under control with exercise and weight maintenance, and I do not care to take a drug that will aggravate that issue and that has been shown to make me sick. I have plenty of joint pain, thank you very much, and do not need more. As for depression: well, creative types are prone to depression, and since I’m already iffy enough about riding this train to the end of the line or jumping off a bit early, it probably would be unwise to swallow a drug known to aggravate that tendency.

And tamoxifen… Holy God! Stroke? Deep vein thrombosis? Blood clots in the lung? I heard about one woman who got a blood clot on the outside of her chest — they  had to remove a rib to treat it. Uterine cancer? A dear friend of mine who was on tamoxifen had to have a hysterectomy to deal with that. Vaginal bleeding? Honest to God, I would rather die than have periods or period-like bleeding come back on me! And that is not an exaggeration.

I’ve highlighted the so-called “rare” side effects in gray. But experience has shown — consistently — that if a drug has a “rare” side effect, that is the one I’ll get. So we need not speculate that one or more of these will crop up during the five years I’ll be required to take the stuff . We know it.

So, OK. I made a discovery: there’s an alternative to tamoxifen and it is more effective in older women. It has fewer effects that are likely to be fatal. The commoner side effects appear to be even less desirable than the common side effects of Tamoxifen. Its uncommon side effects appear to be significantly less horrifying than Tamoxifen’s.

Ducky.

And over the weekend, as I was thinking about this nightmare tangle of decision-making, it occurred to me that a woman who has been told she needs treatment for DCIS after a lumpectomy has two choices and only two, with no middle ground. You can do one of two things:

a) Subject yourself to radiation treatment that has the potential for ugly, potentially fatal long-term effects, and then spend five years swallowing a drug that has side effects that may kill or cripple you; or

b) Have a mastectomy.

Doctors rarely tell women that breast radiation therapy  has effects than can crop up as long as thirty years later.  Among these are leukemia, myelodysplastic syndrome, new cancers, hypothyroidism, bone damage, lung damage, heart damage, lymphedema, restricted arm and shoulder movement, and permanent discomfort to the affected breast.

Mastectomy, as unpleasant as that prospect may be, would solve the problem. All of these matters are obviated by mastectomy, because with no cancer-prone breast tissue left, you are no longer eligible for either radiation or hormone therapy.

As far as I can tell, there’s no in-between. For example, I am no longer a candidate for radiation alone. And apparently no one suggests hormone therapy alone.

So here’s what it boils down to:

For a woman to keep a blob of damaged flesh attached to her chest, she has to accept a panoply of risks from radiation and drug therapy all of which are unpleasant and some of which are life-threatening.

Frankly, when you look hard at these issues, they make mastectomy look damn good. In fact, if I can get Dr. P to come up with some excuses to convince Medicare it’s medically necessary (the chance of new DCIS arising in the second boob is higher after it appears in the first boob, and radiation therapy increases the occurrence of new  lesions in the other breast), I may ask her to lob them both off.

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.

Resuscitating My Life: Überlist 2

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So yesterday I decided I need a couple of broad, overarching lists to get back on track for managing my life in the middle of the current healthcare madness. The first outlines steps to try to recover my health. Next, a strategy for dealing with the dog situation.

Dog Management To-Do’s

1. Decide whether to keep Ruby or not

• Find out if M’hijito wants to keep her

• If he continues to refuse to answer emails and phone, physically go to his house and get a response
• If he wants the dog, leave her there
• If he doesn’t want the dog, retrieve her and make a decision about what to do next

2. If decision is to return dog:

• Call Lindsay
• Get SDXB to help navigate back to Wittman, turn dog over to Lindsay

3. If decision is to keep dog:

• Simplify feeding

• If M’hijito has switched Pup to Charley’s kibble, keep her on it
• If not, feed her cooked commercial dog food rolls

• Order vibrate/shock collar from Amazon and put it on her full-time. Use it to…

• Bring a stop to food competition
• Break up fights with Cassie

• Keep pup off bed

• Only Cassie goes on bed
• Get Costco dog  mattress; place in crate
• Get hinged gate for bedroom door
• After 2 or 3 weeks, leave crate door open at night, with hinged gate closed
• After another 2 or 3 weeks, remove crate from bedroom, leave mattress in place, and close hinged gate at night
• Use hinged gate to confine Ruby to bedroom while gone, leaving Cassie at large in house

• Teach Ruby to use doggy door

• Keep dogs separated when I’m not home

• When weather is clement, leave Ruby outdoors
• Confine her indoors only when it’s too hot, cold, or wet to leave her in the yard
• When she has to be indoors, confine Cassie & Ruby in different spaces

Effing nightmare. As if there weren’t enough to cope with…

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.