I'm afraid the Boobeaucracy won this one.

As I noted in my last, the people at the Dana-Farber Friend's Place Shop have the machine that measures limb volume. They also provide massage therapy for lymphedema, special exercise classes for those seeking to avoid or alleviate lymphedema, and compression garments for those with lymphedema who want to keep swelling under control.

Please note that they charge for all of this. Some of it is covered by insurance; some of it is on the patient's dime.

I buzzed in there to get measured this morning, per the prescription from the nurse at the Brigham & Women's Comprehensive Brest Health Center. Who had, of course, told me, "Call here if you have any questions." (I think you can see where part of this is going.)

While I was being measured, I naturally asked a couple of questions about how to avoid lymphedema. After all, it's fairly horrible, my chances of getting it after lymph node removal are enhanced due to being obese, and who wouldn't want to avoid something like that?

• Avoid repetitive strain, like raking leaves or swimming or kneading bread.
• Avoid long periods of gripping a steering wheel. No long car trips! (Unanwered: what is a long car trip?)
• Avoid hoisting myself up the (steep) staircase at home by holding on to the handrail. (This is impossible for me.) Alternatively, stop every three steps (that's four times in one ascent), release the stair rail, and wave my arm around over my head.
• Don't allow anyone to take blood pressures, draw blood, or administer injections in my left arm, and wear a medic alert bracelet with this information on it. (I can't wear bracelets; they cause pain all up and down my arms and a feeling like my hand has been chopped off.)
• Stop sleeping on my left side (a habit of more than 30 years standing).
• Wear a compression sleeve when I fly. (hot, uncomfortable, very weird-looking)
• Wear gloves when doing anything that could scratch my hands or arms, like planting plants or weeding. (I cannot do this; I have to feel the dirt)
• Don't allow manicurists to cut my cuticles.
• Never let my arm get tired.
• Do a set of exercises daily (I may do this one).
• For the rest of my life.

Well. No one said ANYTHING about lifelong limitations on all sorts of activities when lymphedema was discussed during the consent form signings and other events of Wednesday. All Bravest or I heard was, ">5% chance with signal lymph node biopsy, rising to about 20% in your case if we have to do a full lymph node dissection."

Also, this one. "Most people buy a compression sleeve and wear it when they travel, just in case."

And the more I thought about this, the more I thought about it. I thought about it as I bought a few scarves and said good-bye. I thought about it when I was visiting the grandbaby (who says, "Thank you, Bubbe!" as if saying thank-you was the most fun thing in the world), and I thought about it when I walked in the house, put down my stuff, and burst into tears. And even after I controlled that outburst, the tears kept coming; while I was fixing lunch, while I was cleaning up after lunch, while I was making a potato salad to bring "down the beach" tomorrow. I am planning on swimming in the ocean tomorrow, one of my top ten favorite things.

"Avoid swimming."

When I couldn't stand it any more, I called the Comprehensive Breast Health Center. Who comprehensively told me that since I was a patient of a Dana-Farber doctor, I would have to call my doctor at Dana-Farber.

Which I did, and managed to explain, between sobs, that I had heard and read all this stuff and it was freaking me out and I needed some real information about my chances of getting this thing.

The office nurse called me back, and said that people who are only having signal node biopsies never have to worry about all that stuff. She had even called down to the Friend's Center and asked them what the hell they'd told me. As far as travel goes, the business about needed a compression sleeve turns out to be based on older research, disproven by more recent work with larger populations. (Please note that the person selling the sleeves didn't appear to know this.) I can drive as much as I want to. While they wouldn't recommend me going out to rake leaves for six hours with no previous exercise for months, I can most assuredly rake leaves and swim. And anyway, IF I feel any swelling or tightness or have any spongy dimpling of the arm, they will send me to PT, where my remaining nodes will be manipulated until they drain properly.

I'm still not exactly settled in my mind. The prospect of lymphedema is very frightening to me, and so is having to live a life of constant dread and limitation. When I got off the phone, even though I was relieved, I wept for about five minutes, out of sheer grief that this is happening to me. But I am really glad I checked with the doctor's office, instead of rushing out to buy things and sign up for things I may never need.

Bravest was, of course, distressed by my distress. He has had experiences around getting used to limitations (losing his one remaining eye that had sight when he was 13) that put anything I may go through to shame, which I try to remember before I inflict my vapors on him. And he knows that in all this, no matter how much a doctor may know, the practice of medicine is still practice, not certainty, and opinions, no matter how well-founded, are still opinions. He's pleased with me for calling the doctor's office and getting more complete information, instead of just sitting and sobbing.

But I'm afraid I have to score this one as a win for the Boobeaucracy. I let my peace of mind be disturbed by someone who, under the guise of being a "friend," was actually trying to sell me something.