May brings out the cows...

... and they all lick my head.

(Note to self: I really, really need some better lighting in here.)

This is after a hard day of head-rubbing, hair-tearing, and other work-related nonsense; also some power napping, cat nuzzling and other, less stressful activities. But still -- yes, very curly and without much direction. In back, where I can't take a picture, it could almost be described as what we used to call a Jew-fro.

Also, remember how I looked a lot like my mom? For reasons I'm not entirely clear on -- it's not just because the hair is off my face -- I now look much more like my dad.

More thoughts on breast changes to follow.

April, come she will....

My hair suddenly decided to abandon half measures.

Yes, it looks like seventeen cows have been licking it. But! Brown is back!

In which it is possibly explained why people call me "Upbeat"

Well, you know how it is. You find out you have a life-threatening illness, and you have to annouce it to your friends.

I was reading over some old emails prior to deleting them, and found that this is how I had announced TWCT to a friend who is an Episcopal priest (but hasn't found a place to exercise that priesthood since moving to New Mexico):

" Hi,

First, thank you for your long and newsy letter. I understand – not as fully as you live it, but I do understand – what it is to have a sense of unrealized priesthood. Lately, the desire to preach is on me again, not that our priest isn’t good at it, but I have Thoughts.

Or I had thoughts. Since the 17^th, they’ve all been focused on one thing. I have breast cancer.

(This space reserved for a variety of highly mixed emotions)

I won’t dump all the medicalese on you. [Her spouse] can do that if he wants, and you want. Suffice to say that my choices (oy, such choices!) are between a lumpectomy followed by chemo and radiation, or depending on some genetic stuff they are now doing, a double mastectomy and ovary removal.

I never expected to live a long time, but I was really hoping for heart disease. Of course, I may beat this and emerge a curly-haired blonde. I’ve already decided that since I have the most beautiful middle-aged hair on the planet, and since anything less would make me very sad, I am going either with bandanas or really cheesy wigs in colors like bright green. But not pink. The first person to pin a pink ribbon on me is getting a punch in the eye."

My hatred for pink is undiminished. But this also made me realize that "someone is getting a punch in the eye," has pretty much characterized my approach to dealing with the Boobeaucracy. And you know, while it may have been a bit hard on some of the people who had the misfortune to get in my way and some of them may not have deserved it, on the whole it wasn't a bad approach.

Except for one thing. I have already told the Bravest Man Alive loudly, vociferously, repeatedly, and with great variety that any obit for me is never, ever, EVER going to say, "after a long battle with cancer." It may say, "died, after a long battle with what she called the Boobeaucracy, from cancer."

I will most certainly end up dead. But I will never be defeated.

(And no, I haven't had any bad news. Just... going through a few things, is all.)

Surgical follow-up / Hair update

You know, sometimes I like to think I'm a smart person, and then...

Since I had an appointment at 9:30 this morning (yesterday, now) at Dana-Farber, we thought we'd go out to breakfast in the area. It took me two days to figure out that the reason there aren't any good breakfast places near the hospitals is that all the hospitals have cafeterias. ~_~

Anyway, the Dining Pavilion at Dana-Farber has very nice corn muffins. And the surgeon doesn't want to see me for a year!

Also, by popular demand, March Hair with Spit-Curl.

First HAIRCUT!

The Bravest Man Alive gets his hair cut every six or seven weeks. When we first got married, I was a Wild Thing -- No one was gonna touch this magnificent mane, nossirree! But then, his usual barber was closed one week, and we wandered into Irina's, a salon owned by a Russian lady.
Who gave him a really great haircut.

I watched Irina cut hair for a solid six months before I let her touch mine. I'd had a really bad experience with a Brookline hair salon early in our life there, and I was sick and tired of people letting out their artistic visions on my head. (Also, I don't drink in the daytime, and the mild discussions about family and vacation spots I hold with hair stylists could barely be called gossip, so the wine-and-celebrity-trash-talk scene was unappealing.) When I finally sat down in Irina's chair, she went at my head like a contractor who's just been waiting for the final bit of paperwork. Clearly, she'd had a plan in mind for months.

The results were pleasing, and I've worn my hair on the shortish side ever since. It worked because I have (or had) very "Russian" hair, thick and wavy.

Fast forward 13 years and we're settling into our new home in Malden. Obviously, schlepping to Brookline was not feasible, so we began shopping around. Unfortunately, Malden and the surrounding towns are full of places devoted to big, puffy 'dos in unlikely colors on people who are significantly older than I am. So, I asked a church friend whose hair I admired for a referral.

Enter The Hair Cafe.

The Hair Cafe would be an impossibility in Boston. It's huge. It takes up the entire second floor of a major business block in downtown Malden. And it's staffed entirely by kindly ladies (old and young) who keep track of birthdays, decorate the place for every holiday, and serve coffee and cookies to all comers.

I wouldn't trust most of the stylists anywhere near my head (see comment about big hair and unlikely colors, above), but Debbie is different. She's not into trying to make my head into an artifact. And yesterday, yesterday, she applied scissors for the first time to my "after hair". I was getting a Kewpie-doll cowlick on top. She also gave me good advice about managing the hair while it grows out -- comb most of it straight back as I used to do, but comb the edges right around my face forward.

And, sure enough, people at church could not stop talking about my hair. It was kind of bewildering to hear about how cute and curly it was, until I got home and discovered that the hair which was wet when I left the house had formed itself into perfect Betty Boop spit curls around my cheeks and eyebrows.

First follow-up!

Today we rose before dawn, ate breakfast, and I took off through the early rush-hour traffic to Dana-Farber, where I barely had time to fasten on my radio-tracking button before I was led to an examination room.

Dr. Lin is friendly, fast, and thorough. She tells me that in the next couple of months the left breast, as the radiation-induced swelling declines, may feel lumpy or uneven -- good to know, as otherwise I might be freaking out.

Otherwise, nothing. I can come back in July for a mammogram and a visit with the nurse practitioner. I will be seeing one or the other of them, alternately, every six months for about three years, then just annually, then... not.

In other words, I am as cured as I can be at this point. A trip next Tuesday to let the surgeon admire her handiwork, and I am DONE. Or done-ish. Or something.

It's never really over. I can't call myself a cancer survivor unless I die of something else. Not that this depresses me, mind you! I always wanted something more than "She was a survivor" as my epitaph, and now I have more of a chance to earn something more interesting.

And I will, because as I was checking out, I asked if I could go see the people in the Patient Advocate office. The nice woman at the check-out desk couldn't find their location in her directory. She sent me to the Patient and Family Services office (home of the Volunteer Coordinator), but that wasn't the right place -- and though I did obtain the Patient Advocate phone number there, I was not told where they were located.

I did, however, find out that there is a Patient Advisory council. They like you to be out of treatment for six months to a year before you join it, so that you'll have a sense of objectivity again (instead of being an object). But if they think that's going to make me less persistant about fixing some of these systemic things, they have another think coming. I may not be steaming from both ears and the top of my head any more, but I still have all my notes!

Radiology follow-up

Today was the radiology follow-up. And the radiologist doesn't want to see me for a whole year! My skin looks great, I have to watch out for sunburn, take it easy with the left arm, and let her know if anything changes. "Anything" means a sudden increase in breast density, a sudden decrease in breast size (as if!), pain in the chest wall, constant coughing (and how I'm supposed to tell this apart from my regular constant coughing, I don't know), or, God forbid, a heart attack.

Unfortunately, she also told me that all my doctors at Dana-Farber were notified that my treatment was complete nearly a month ago, and none of them have contacted me about follow-up. So I made some calls. I have one appointment set up with the surgeon at 7:30 AM (EEK) on March 20th, and the oncologist's admin should call me back soon.

Which had better be tomorrow, or the patient advocate at D-F will be hearing from me again.

Oh yes -- new picture, this time with actual hair. It's coming in silver on the sides and dark on top, but the lighting in my study doesn't show the dark hair well. I went without a hat to church yesterday, and most everyone was flattering.

And I think it's true that, as I've noticed when looking at pictures in a Mennonite friend's high school yearbook, or the faces of nuns, or even the faces of observant Muslim women -- when the eye is not distracted by hair, you can really see the person in the face. Not that my face is particularly lovely, but it doesn't need to be.