Dispatches from Hell: Update

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.