funny

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!

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!

Okay, so here’s where we’re at now:

Yesterday, after I talked with Dr. C, my regular gynecologist whose practice resides at St. Joseph’s, I reported to the Mayo radiation oncologist that Dr. P., the surgeon, had referred me to. Let’s call him Dr. W. He agreed with Dr. C that the breast was infected and seconded Dr. C’s advice to continue on the cephalexin.

The Mayo uses a newer, shorter regimen of radiation — three to four weeks, rather than five to seven weeks. Dr. C had advised me to ask whether they used an “intense” (which she characterized as shorter) or a “weak” radiation treatment and said that Medicare does not cover the so-called “intense” version. When asked whether Medicare would cover this three- to four-week regimen, Dr. W. did not know.

And believe you me, you can NOT get a straight answer out of the Mayo as to whether anything is or is not covered by Medicare!

So now I have to track that down. Since the Mayo doesn’t accept Medicare assignment, though, it may be best to get this done at St. Joe’s or at the even closer venue, John C. Lincoln — and in fact, today I need to check with Young Dr. Kildare about that. YDK is pretty proactive and he does have the advantage (even in this day and age!!) of owning a male voice.

Dr. W. wants to put me on a five-year regimen of tamoxifen.

Charming.

Dr. P has said repeatedly that tamoxifen would not be necessary. But then she said a mastectomy would be not necessary…radiation would be not necessary…cefalexin would be not be necessary…. Hmmmmm….

No two doctors have the same advice, which indicates that few of them have the same understanding of the DCIS disease process, if it is a disease process — some doctors believe it is not, necessarily.

I called the Mayo early in the afternoon to put off the surgery scheduled for Monday. And come evening, Dr. P herself called in person to beg me NOT to put it off. She said assuming it is an infection — clearly Dr. W’s opinion had registered with her — then the worst thing to do would be to put off the surgery, because an effective treatment is surgical: to go in there and clean it out. I don’t know if that’s so; can’t find anything on the Web one way or the other on surgical treatment of breast infection, but haven’t tried very hard so far. She really laid on the pressure, and by then — it was six or seven o’clock at night — I was just wrung out. So I folded. The surgery is still on for Monday unless Dr. C calls back today and is even more adamant to the contrary.

On the other hand, I have no intention of taking tamoxifen. Because… Indeed I have found plenty of peer-reviewed, randomized studies that show radiation alone is as effective in preventing recurrences as radiation plus tamoxifen. And tamoxifen’s side effects are markedly more baleful than radiation’s: osteoporosis (already got that; don’t need more) and uterine cancer, among others.

Meanwhile, I now have appointments next week with Dr. W₂, a medical oncologist recommended by Dr. C, Dr. W₃, with a surgeon recommended by Dr. C., and finally with Young Dr. Kildare, whose redoubtable common sense I will need by the time I get through with yet another surgery on my boob and consultations with two heavy hitters in scary specialties.

Dizzying, isn’t it?

This morning, however, I’m feeling somewhat better. A lot better, actually.

Missing just two doses of the cephalexin doesn’t seem to have done much harm. This morning it seems to be chugging right along. Dr. W (radiation oncologist) outlined the area of infection with an indelible marker so I could see, in a mirror, whether it was spreading or shrinking, and by dawn’s early light the inflamed area had receded visibly. The hundred-degree temp was down to normal — under 98.6 for moi — and I felt much less debilitated.

At three in the morning I managed to finish a project for one client. How well the work was done remains to be seen, but at least I reached a point where I could declare it done. More incoming got finished later this morning. And another project just batted back to me about 5 seconds ago.

Meanwhile, since I’m as certain as I’m sitting here that the next step will be a mastectomy, I figured I’d better learn something about that.

Did you realize you can get lymphedema even from a lumpectomy? I knew it was a common nasty aftereffect of mastectomy but was not told a simple lumpectomy could cause it. Wouldn’t it be nice if these folks would give you the full story about what to expect?

Anyway, Dr. P and Dr C are both pushing for reconstruction — Dr. C not as hard, but still lobbying gently. So that in particular was the topic of this morning’s ventures into the Wonderful World of the Web.

Holy sh!t.

From what I can tell — from every site and journal article I visited — breast reconstruction is More Surgery Waiting to Happen. To say nothing of more complications, more infections, more pain, more stress, and more misery. The results under the best of conditions are far from optimal. To create a fake breast from your own tissue, gobs of flesh have to be gouged out of your belly, your back, your buttock, or your thigh, creating yet another surgical wound for you to recover from, causing potential muscle weakness and nerve damage, and adding an extra mutilation to the one on  your chest. Silicone and saline implants often fail, complicate future mammograms, and on average have to be replaced(!!) within ten years.

Unless you’re actively on the prowl for a man or are SO narcissistically wrapped up in your body image that you simply must have a fake thing sticking out of your chest to make you feel whole, reconstruction appears to be a choice that’s likely to lead to an unsatisfactory result.

Doctors — including those of the female persuasion — assume that most women indeed are thus narcissistically wrapped up in their body image and so tend to urge patients to undergo this violent and often troubling surgery on the theory that they’ll feel better psychologically if they can look in their mirror and see a decorative lump perched on their chest.

What should I find as my jaw was bouncing off the floor but the website of an organization that advocates for women who do not want reconstruction.  Hallelujah, brothers and sisters.

They have photos of women who have had single or double mastectomies, in the altogether (well…waist up) and in various costumes. And gee. They don’t look horrible at all. Unless you had known these women before their surgery, you’d  never know they were boob-free, especially if they were fairly small-breasted to begin with. Which (after the 30-pound weight loss) I happen to be.

The group argues forcefully for acceptance of the breast-free state, at least for women who have the self-confidence to accept themselves as they are.

So I felt much encouraged by that.

A simple mastectomy is apparently no worse than the lumpectomy, which, when uncomplicated by an infection or a hemotoma or a seroma or whatEVER the hell it is, goes very easily.

And speaking of going, now it’s off to Whole Foods. Last time I was there I spotted large rolls of lamb cooked up for dogs. We’re running low on the pooch chow, and you can be sure that I am NOT going to feel like whipping up another eight to sixteen pounds of cooked dog food anytime soon. Pup has developed ear infections that the vet thinks represent a food allergy, probably to beef or one of the grains I put in the dog food. Beef is a common allergen, but anything’s possible. Right after I’d laid in enough food to last the dogs through what I imagined would be the duration, he announced that I should quit feeding her beef and give her chicken instead.

Not gonna happen, doc!

This stuff at WF is grain-free, so if I pick up enough and it’s also cow-free, it will give a chance to see if she’s allergic to something I’m feeding her. If her ears don’t improve, then we’ll know she has either an air-borne allergy or an infection. And if I get enough to last her for a couple of weeks and feed Cassie the stuff in the freezer, there should be enough food to carry them through a good three weeks.

À bientôt, then.

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.