First Post MAMMOGRAM!

I admit it, I was nervous. Because much as I try to tell myself, "Everything's FINE, everything's FINE," you never really know, you know?

Everything's fine. I have documentation!

And the NP for my oncologist says that the Cancer Institute radiologists are very, very conservative. So, if they don't want to see me in a year, that's because there's nothing to look at.

Next up is probably knee surgery, but that's a whole 'nother subject, and not for here. I need to find a way to archive this little history away from Google, so it will be preserved in digital amber, for future reference.

June is bustin' out all over...

For starters, here's the hair...

I'm going to have to get someone to help me with a side view. It's very much the same colors as before -- white up front, dark grey on top, brown in back.

And very, very curly. I took this picture the day after the first real hair-cut, and it's grown at least another inch in the past 3 weeks.

Other things have really changed as well.

Part of the purpose behind this blog is so that if my friends or friends of friends have someone dealing with breast cancer, they can at least hear from one other person about it. I don't think I'm typical, but congruent experience can help one feel less alone.

So, it's time to write about how my left breast has changed.

I've always been lop-sided (most women are), and the left breast has always been the larger of the pair. Now, it is more so. The texture of the skin that's grown back after the radiation is slightly different. The scars are barely visible, but they are there. And sometimes I have pain at the surgery point (usually when I've been wearing one of my more "uplifing" bras, as this seems to stretch the internal scar).

The pain is sometimes quite sharp. I'm very glad I was warned about it, or I might mistake it for something else.

The bottom of the breast is quite lumpy. It feels as though hard and heavy things have settled through the mush. Again, I am told this is normal.

More disturbing is the way my skin looks -- it's all puffed and swollen, with little dimples where the pores are -- kind of like chicken skin with the pinfeather points. Every individual cell is swollen. I understand this can take 10 years to clear up. It's disturbing because it looks very, very wrong, not like a breast at all, but some new and non-attractive thing.

In summary: When the tell you that you can "save" your breast, they should perhaps think more about "exchanges."

The Boobeaucracy is Unbelievable.

You'd think, would you not, that I was not going to have much trouble with the Boobeaucracy except at regularly-stated intervals, would you not?

And you would be wrong.

First, billings. There was a bill (which I paid) for my recent visit to Dana-Farber to see my surgeon for the final post-surgical follow-up this year. Fine.

And then there was another bill, from the hospital where the surgery was performed, because my surgeon does her surgery there.

Mind you, the hospital did nothing -- not one thing -- to make this visit possible. It wasn't held in their building. Their resources were not used for scheduling it. Her time was not taken up when she could have been in surgery, as this appointment was during one of her standard clinics. The hospital did nothing. But since she did the surgery at their hospital, they get to bill me for a follow-up. And, to pile Pelion on Ossa (look it up, look it up), they billed me as if this was just an additional bill from last August that had somehow been missing since then. No record anywhere on the bill that this was for the follow-up. I had to call to figure that out.

This is the first time in the whole farrago of bills that I have been billed by one facility for receiving services at another facility. The only resources I used from Brigham and Women's Hospital were the computing, printing, envelop-stuffing, and postage required to send out the bill. This seems to have justified a bill of more than $100 dollars, of which I am paying $27.50.

AND THEN!

CVS Caremark, who recently took over the contract for the Federal Employees Benefit Program's Special Pharmacy, called today -- yes, on Memorial Day -- to find out if I was still taking Neulasta. The person calling didn't know what the drug was for, only that it was an expensive injectable. I clearly explained that there was no way I was taking Neulasta for nine months because that much chemotherapy would kill an elephant, and she said, "Then I'll close the account."

Right. Because no one can write a computer program to look at open accounts and pull ones that look funny for review by a human, another whole group of humans are working overtime on a holiday weekend and billing the government for their time.

Which means I (and you, if you pay taxes) just paid for this foolishness. It's enough to make a person really rather annoyed!

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.