Recovery

I'm doing OK. Things hurt, and my neck is stiff from sleeping in a position I'm not used to. There's no fever, and the sites don't look too red or feel hot (some spectacular bruising, though). But I am moving around quite well, and starting to go a little stir-crazy, which is a good sign. Tomorrow I will put on ordinary clothes (I've been lounging around in mumus) and we will take a short drive and do some errands, just to gauge how tired I get.

Recovery also being a time for reflection, I should -- in the interest of honest reporting, as Bravest is wont to say -- relate that I know that a lot of my tears and flapdoodle before the surgery was due to the pressure of knowing that I have cancer. Even with the tumor out, I will still need a lot of patience and support from my friends and family to get through the next four to six months.

But I am glad to be feeling that mentally, at least, I am back from the surgery. It took about 36 hours for the last of the "logy" feeling to wear away.

Next up: haircut! I am having my hairdresser cut most of my hair off on Saturday, so there won't be so much of it to clog up the shower once the chemo starts in September.

Emergency keyboard is enabled!

So, I have absolutely NO griping to do about any aspect of the whole experience. We got there on time, and everyone in the whole hospital that I encountered did exactly what they were supposed to do. I had a lot of nausea from the general anesthesia and the anti-nausea drug they gave me sent me right to sleep again, so we were later getting back than I'd thought we'd be. but that was the only thing that could be described as a hitch.

I give the credit to 1) a very good hospital/surgeon/staff, and 2) to prayer. Because a lot of things could have gone wrong, but none of them did.

Also, my surgeon is a BABE. She showed up at the pre-op in a white linen suit, heels, a green necklace, a sparkly pin, and her long blonde hair in a carefully slightly untidy bun. Everyone there (save Bravest) let out an admiring sigh. Then she changed into scrubs, and was back in her full vestments for post-op. Scary!

I have some pain, but it's really not so bad. Tylenol and some ice packs have been all I needed during the day.

We should hear in a about ten days regarding the findings. Then I will know if I need more surgery, or if I can move on to chemo.

Sugery today.

The computer keyboard is dead, so this is from my teeny Droid keyboard. All is welll, and e'll hve results in a week or two.

No more deep thoughts today.

A reassuring note

Today was a much better day -- full of swimming in the broad Atlantic, lolling on the beach, and eating yummy things with pleasant people.

I love ocean swimming, particularly in surf. There's some point in being fat when you're in the water; you don't get cold as easily, and you're marvelously buoyant. I spent nearly an hour without touching my feet to the bottom, and emerged feeling just grand.

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.

Medical Time

Today (yesterday, really) I had appointments at 9:30 and 10:30 for pre-operative stuffs. All the morning things were done with expedition, we left the house with 50 minutes to make it to Brigham & Women's, and were at the first office we needed to visit with five minutes to spare.

Whereupon we entered Medical Time.

In Medical Time, all times are later. Since I am trying to be efficient and effective, I had lots of documents ready to hand. This disconcerted everyone we encountered. We actually made it from the consent form review over to the pre-operative center with 20 minutes to spare, which was good, as it turns out the hospital's information about me was 20+ years old. So I went over to Registration and fixed that, which meant I was right on time.

Then we waited half an hour.

I then handed the nurse practitioner my medical history, my pre-surgery clearance report from my primary care (with all the meds on it), my Healthcare Proxy, and the consent form from my first visit.

Turns out the EKG was bad, so they had to redo it. But! In a true triumph of efficiency, the pre-operative center outfits their consulting rooms with lab chairs, and a lab tech with both an EKG machine and a basket of blood-drawing supplies roams the halls. Everything is done in the room, while the nurse practitioner is continuing to work on getting all your meds into The System.

(Oh, funny moment. She asked what my blood pressure usually was, and I told her, and then said, "If you're going to take it now, could we do the urine sample first?" "Oh no, we don't need a sample, I'm so sorry, I know the form letter says we do, go right down the hall and take your first left, it's on the left." Result: BP was 116 / 64 with a pulse of 69.)

I also found out the results of my echocardiogram. I have the heart of a workhorse, surprise, surprise.

And even with me being hyper-prepared and all this efficiency, we still weren't out of there until 12:30. So, we got some lunch, and then schlepped UP one flight and through three different bridges between buildings and past two incorrect elevator banks to the correct ones, then DOWN three floors to the "Friends Center," where they offer cancer-related goods and services.

Because it turns out the support bras I bought on Saturday aren't the "approved" support bras (and why no one told me this is a subject for further inquiry), which are provided through insurance (for one bra) and free for the second because everyone wants to be nice to women with breast cancer. (I am not really happy about this. I prefer to be asked about what I need rather than have someone gratuitously assume I can't pay for a bra.) Also included was a nice canvas bag (purple, thank goodness!), a humilating pink Boston Red Sox baseball cap (you should hear what our local sports radio says about people with pink caps), and a whole bunch of very sobering literature. What to eat when you have advanced cancer and so on.

We finally got home at 2:45. So much for morning appointments! But I cannot complain, as every question I had was answered and quite a few I hadn't thought to ask as well. Still, it doesn't bode well for the day of surgery.

Oh, and I have to make two phone calls Monday, one to the surgeon and one to the hospital, both to confirm that the surgery is, in fact, happening.

I go back on Friday to have the volume of my arms measured, in case of lymphedema (warning, very scary pictures). Oddly, this is done at the Friends Center instead of by the doctors, even though they prescribe it and want it done. Apparently, because treatment is massage therapy which is done at the Friends Center, it doesn't count as "medical". With any luck, my 10 AM appointment will be over before dark.

OK, this is annoying

I wanted to post some pictures here to show all my wonderful readers how my hair looks now. But I can't. Because Blogspot won't read the URL of pictures posted to the Livejournal Scrapbook, even if they are public. No, I have to use Picassa, or add them to the blog in some other way, or get them into a different URL.

Sorry, not maintaining two separate Web picture files. You-all will just have to meander over here.

And while you're in the neighborhood, click on the tag (list on the right) called "absurd locutions." You will instantly feel better about your own sanity and writing ability.