Coffee heat rising

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

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

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

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(?)

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.

 

 

UPDATE to the Latest Chapter

So after my long grutch about today’s adventures, I talked with my former brother-in-sin, who happens to have been the premier cardiac anaesthesiologist in the Pacific Northwest until he retired a few years ago.

I’d emailed the details of today’s misadventure to him — my earlier post today was based on that message. In response, he called on the phone.

He said that either kind of respiratory infection — upper or lower — poses certain kinds of risks of complication with anaesthesia. If I had a lower respiratory infection, he would not have done it. If I had an upper respiratory infection, he would have done it. He figured I have an upper respiratory infection (you and I would call that “a cold”), said it was very easy to tell (I was never examined), and he thought the surgery should have proceeded.

“Is it a teaching hospital?” he asked.

“Sure,” I said. “It’s the Mayo.”

“Well, the problem with teaching hospitals is that you can get into turf wars.”

Shee-ut. What IS it that I can NOT shake the dust of academia from my feet?

He says she should have cleaned out the hematoma, infection, whatever when she did the excision. I said that’s exactly what she intended to do: that was why I was there!

He said it was a shame I had to go through the clean-out  conscious — that it’s a painful procedure.

I said well, it sure wasn’t any fun, but it wasn’t that bad…not the sort of thing that would cause you to scream for help.

He said, “You are one tough bitch.”

Heee! There are those who think I’m a bitch, all right. But tough? Meh!

Unnumbered Chapter from the Never-Ending Story

So by 11 a.m. I staggered back into the house after today’s adventure in the Mayo’s high-powered operating arena. The scheduled surgery did not happen, a conflict of opinion among the distinguished doctors did happen, and I enjoyed a painful but interesting procedure to scour out the inside of my boob.

Here’s what happened.

Bright & early today, we (i.e., me and wonder-surgeon Dr. P, who despite my endless complaints does have a sterling national reputation) had scheduled the third attempt to excise enough boob tissue to obtain clear margins on an encapsulated papillary carcinoma which has proven to be significantly larger than indicated by repeated mammography and ultrasound. Assuming the pathology reports continue to show no sign of invasive cancer, the next surgery, if this fails again, will be a simple mastectomy.

Meanwhile, though, after the last surgery,  I developed what appeared to be an infection: redness, heat, swelling, pain. Two (much lesser!) doctors diagnosed this as an infection, but Dr. P felt it was a large hematoma that had filled the surgical cavity. Nevertheless, I’ve been on cephalexin since the 4th, with apparent improvement.

Okay, come 6 a.m. we’re on track to try again. However….

On Thursday I started to come down with a cold. By Friday it felt like someone had stuck a blowtorch down my throat, and I was running a fever ranging from 99.5 to 100 degrees (“normal” for me is about 98.4, so that’s pretty high). Saturday the sore throat cleared, leaving a congested cough and a lot of post-nasal drip (unclear whether the cough proceeds from the chest, or is only a response to the throat irritation from the little nasal waterfall, but it’s probably the latter). Sunday the fever drops into the more or less normal range — 98.4 to 99, up and down). It’s worth knowing that before the virus came along, the temp would spike off and on to 99.5; Dr. P said that was consistent with a surgical hematoma in the breast.

Today I show up to be prepped and of course tell them about this new development..

Nursing staff and her resident believe the procecdure, which requires me to be knocked out with anaesthesia, will be canceled. Dr. P begs to differ. She says we should go ahead and orders her staff to Make It So.

Now one Dr. M, a gray-bearded anaesthesiologist who looks fully senior and wise as the ages, appears on the scene and asks if I’ve had a fever. I tell him about the 100-degree spikes on Friday and Saturday. He thinks about this for approximately three seconds and then says, “It would be foolish to proceed.”

I personally do not argue, because that’s my own private opinion, which as everyone knows is infallible.

Dr. P resurfaces, and she is peeved. She disagrees, but since the man is simply not going to do it, she’s now stymied. She reschedules the excision attempt, but while I’m there she hauls me into the OR to clean out the boob under a local. When she opens the thing up to suction out the fluids, she finds no pus or other indication of infection — just a lot of old, stale blood. She expresses her satisfaction that her diagnosis is now proven correct: not an infection. I think, uh huh… after I’ve been swallowing cephalexin 4x a day for the past week or ten days, and the red areas that concerned the other two docs have receded to the point of disappearance. On the other hand, the incision split open on Thursday; the hematoma has been quietly draining since  then, and that also could account for the apparent improvement.

She administered an IV antibiotic, suctioned and cleaned with élan, treated the wound directly with antibiotic, and closed with antibiotic-laced sutures.

The procedure was pretty painful despite liberal amounts of Lidocaine. At one point my blood pressure, which is usually in the 130s/80, went up to 297/120. It dropped fairly quickly into the 150s, which itself is unacceptable but at least not a sign of an impending stroke. The nurse said pain often causes BP to go through the roof. Hope that’s all it is…but now to add to my  joy I’ve got to go back to measuring my GD blood pressure twice a day, a pain in the tuchus and yet another source of daily worry.

Temp is 99.6, not good. The cough is nastier than it was this morning. But after an oxycodone and an afternoon of sleep (interrupted by only two phone calls…), the pain is receding some and the swelling is to a large extent reduced, though there’s still some hard stuff in there that feels like the hematoma…I’m afraid it’s probably still bleeding inside.

Given that the cough is now worse and I’m gagging up stuff that’s choking me, I’m glad the anaesthesiologist brought a stop to the craziness. But it means I’ve STILL got two procedures to endure, at the very least. And what do you bet something else comes up to require another one?

We should get a blog pool going on here… How many more fun procedures before this comes to an end? Cast your bets, ladies and gentlemen!