"Fair" is where you eat fried dough and corn dogs.

So, let's get to the whole issue of fair and unfair. And please bear in mind that this is me typing right now. Tomorrow, the emotional barometer resets and readings could be quite different.

Right now, I think the following things are unfair:

• I got born white, to a middle-class professional family in 20th-century United States of America.
• I had food based on the best nutritional knowledge of the day, regular medical and dental check-ups, all the immunizations available, and any other medical care I needed.
• Even though I'm female, I got to go to school, and to absorb as much eddification as I wanted or was able to make use of. Sure, there were sexist obstacles, but nothing like what young women face elsewhere.
• My parents never, ever, even once implied that my goal in life should be to get married and have babies.
• I went to college, found work, found love, had a baby, got twisted up by life but became untwisted again.

All of this is manifestly unfair. I didn't deserve any of it. Most of it I had no control over, nothing to do with.

And all of this is leaving aside the fact that God gave me, very early in life, a deep belief in him and a corresponding sense of my own -- there's really no other language for this -- sinful nature, then later, through various means, showed me the way out of that Slough of Despond through the sacrificial love of Christ. I don't know why God called me so young. Certainly, it hasn't been because I was destined to achieve any great thing for God.

So for me to claim that having cancer is unfair, or having to deal with the thought and possibly the fact of losing both breasts AND my hair is unfair, or anything else unpleasant that happens to me is unfair would be ungrateful. To say the least.

And if that weren't enough, I live in a place and time when having the type of cancer I have is not a death sentence. Compared to the horrors that happen to other women, it's barely an inconvenience. And if this kills me, I'll still be better off than most women dying today -- I'll be between clean sheets, in a clean room, with plenty of drugs and people who love me all around me.

So, if you feel like what's happening to me is unfair, go ahead and feel that way. I'm not telling you how to feel. I'm just saying that what I feel is sad and scared, but I don't feel that either Life or God has been unfair.

Right now.

Ask me again after my first two chemo treatments.

Stress cache overflow / Edge of the Next Wave

So, the doctors at Dana-Farber are great. They really met me half-way, understanding at once that I am able to comprehend medical stuff and deal with it fairly well (at least on the surface -- we're coming to that).

The systems at Dana-Farber were not reassuring. When I went to check out from seeing the three doctors, the tests they had told me they were ordering were not in The System, and people had to be paged to confirm what I remembered.

And when I got down to the lab, two out of the three blood tests ordered were missing, and I had to be insistant, and at that point I lost it.

How is a person supposed to feel safe if the best cancer institute in Boston can lose a set of test orders twice in less than four hours? And is it supposed to reassure me when you tell me that it happens all the time? What if I'm unconscious or drugged and it's up to Bravest to remember what's supposed to happen? What if he's not there?

The only solution I can see is to ask for my own copy of every order, so I can give the official paperwork to the scheduling people and still have one copy for myself. Which is going to be a pain in the ass, but this is not happening to me again if I can prevent it.

In slightly better news, apparently I am the Very First Person to fill out a patient survey on line and send it back via email. So I told the doctor who told me this that they'd better think of a way for people to do that, because I am the edge of the next wave, and those who come after me will expect things to work like that. So, mission accomplished, perhaps!

Oy, such choices!

Here is what the surgeon said:

·        The type is invasive ductal carcinoma. The Invasive part means it’s already starting to break out of the duct where it began. It’s still very small, so it’s PROBABLY Stage One, but we won’t know till the surgery is completed.

·        The grade is Grade 3, meaning this is an aggressive cancer. (It wasn’t visible on a mammogram 15 months ago.)

·        The receptor information is… not good. It’s triple-negative for hormone receptors, meaning I will definitely need chemotherapy AND radiation after surgery (if I go for a lumpectomy).

·        There is a genetic component to this which means I might be facing a double mastectomy and ovary removal, and still need chemo. We’ll get to that later.

Here is what the medical oncologist said:

·        Pretty much the same thing the surgeon said, but with more emphasis on survival rates and such. If I have a lumpectomy and then have the radiation and chemo, I can better than double my survival chances (whatever “survival” means in this context). Overall , the odds are better than fair.

·        Chemo is, at best, four treatments over three months. At worst, it’s more like 10 treatments over four months. And yes, I will be saying farewell for the present to my hair. Best and worst are decided by the pathology results after surgery.

Here is what the radiologist said:

·        Radiation does funny things to your skin and even deeper tissue. It can take years for this to go away.

·        There’s a risk of heart issues (they will need an echocardiogram), but they probably wouldn’t manifest for 10 to 15 years.

·        There’s a .002 chance of the radiation causing cancer.

Now for the interesting part – here’s what the geneticist said.

·        Because I am of Ashkenazi Jewish descent, there is a chance that the cancer is caused by one of three gene variants. IF this is true, I will probably want to go with a double mastectomy and ovary removal, because the cancer has a 65% chance of recurring, and the ovarian cancer risk is also high.

·        IN ADDITION, IF I have this gene, there is a 50% chance that my brothers and sisters have it as well, and a 50% chance we’ve passed it on, and a 50% chance that our children will pass it on.

·        This has consequences for boys as well as girls. The guys would be at increased risk for male breast cancer, and for prostate cancer. 

·        The geneticist is pretty sure this did not come from my mother's side of the family, because aside from Mom herself, all of the women on that side (except for me) are cancer free. She suspects that it’s from my father's side, given the prostate cancer that my grandfather and his brothers had, but it’s very hard to tell without knowing more about the women on that side.

I should have the results of the genetic test next week. If they are negative, I will probably have more tests done to try and rule out a more rare mutation on the same gene. And then I get to choose what to do… Oy, such choices!

Cognitive Disconnect

I was told, "Bring FILMS of your three most recent mammograms, the ultrasound, the biopsy, etc. NOT a CD; FILMS."

So, I asked the radiology dept at my health plan for FILMS. Naturally, this request got screwed up; when I arrived at the radiology desk I was presented with three CDs.

"But I need FILMS!!" I wailed. And I immediately contacted the intake people at Dana-Farber, and yes, if at all possible, they wanted FILMS.

So the nice radiology lady called her equally nice friend at another branch, which is the only place where FILMS are printed these days. See, my original FILMS were brought up to Somerville when I requested copies, digitized, and sent back. Somerville doesn't make prints; only Kenmore makes prints.

The nice guy at Kenmore (way into downtown Boston) makes some prints, and after a brief pause from schlepping for lunch I schlepped in there for the FILMS.

And when I had them, I called the intake lady again to tell her I had FILMS! "YAY," she said, "Those are much clearer than digital images!"

Umm.

"You realize," I said, "That what I have here are not ORIGINAL FILMS. Those were sent back to the warehouse on Friday, and I won't be able to get them until Wed. or Thurs. if you need them. These are FILMS of DIGITIZED IMAGES of FILMS, because you said you wanted FILMS."

"I'll let you tell the doctors that. They want films, they have films."

Boy, is this relationship going to get off to a great start.

Now look, I understand that a film isn't going to break down into pixels. And I also know that because I am seeking treatment away from my HMO network, there's going to be some communication breakdowns that I will have to navigate.

I am still pissed at my health plan for not knowing what The Best Cancer Institute In The Country wants when they say "FILMS." But I am ALSO pissed at TBCIITC for 1) not getting with the Program (digital mammography is here to stay, soon there will be no films at all, what will you do then?), and 2) not instructing their intake people to as for ORIGINAL films, if films they must have.

Oi.

OK, this is just plain strange

So, the nice people at Dana Farber sent me homework of a sort -- one of those long forms you fill out on your initial visit to a Doctor's office. They sent it via a nifty sort of email -- Cisco's Registered envelope.

Truly geeky, no?

But the form itself is designed to be printed and then filled out by hand. And it's not even well-designed for that purpose.

I see I have a mission here.

About that religious thing

I'm quite religious. Just sayin'. I first prayed when I was about two and a half years old, and God has been a prime relationship for me pretty much ever since.

Now you might think -- based on the mostly fine work done by Dr. Kubler-Ross -- that as part of my own anger, denial, bargaining thing I would at this point be too pissed off to be talking to God. But no. Either I've moved straight to denial (and most of the time that's probably true) or I'm already at acceptance. Not of death, not yet -- but of having cancer.

Cancer is a particularly scary thing for me because both my parents died of it before they were 70. My dad was gone a month before he turned 63. I'm 56. I did a little bit of care for my dad while he was dying, and quite a bit of caring for my mom. I know what dying from cancer looks like, and I have really been hoping for heart disease or stroke instead, which is why I haven't much bothered about being obese.

I also know a little bit about suffering. Namely, when you're suffering physically, you don't really have a lot of thoughts to spare for things like the state of your soul, being united to Christ, etc., etc. The model of slow and holy death one finds in novels from the 1800s is mostly based on the way people died with TB, a disease that tends to put one in exalted emotional states. Mostly, it's not like that. It's beastly hard work until your brain shuts down, and even then there's some core things that keep going. The last sound we ever heard from my mother, for example, was a laugh -- one of us kids had made a weak joke and everyone laughed, more out of tension than any sort of pleasure, and Mom laughed because she heard her children laughing.

I don't think I'm dying here, but I do think about dying quite a bit. I never expected to live to be old, never wanted to be old. Any time anything wonderful has happened in my life, my joy has been accompanied by a small voice saying, "Heaven's better! Heaven's better!" Which didn't diminish the joy one bit. It's as though the happier I am, the more I'm sure that this isn't home, that my real place is elsewhere.

So this intimation of mortality isn't the shock it might be for some people. I don't know how else to put it without waxing into religious language, so y'all just going to have to put up with that from time to time in here.

When darkness veils his lovely face,
I rest on his amazing grace.
When all around my soul doth fail,
My anchor holds within the veil.
On Christ, the solid Rock I stand!
All other ground is sinking sand.

What is the Boobeaucracy?

There's an awful lot of people with breast cancer out there. And now that some sorts are fairly treatable, there's even a breast cancer business.

You don't believe me, look at all the stuff with pink ribbons on it.

Now, I am a blunt, tactless person, and I live by some fairly simple rules. One is, don't do stuff you don't want to do. This includes not buying stuff you don't want to buy, or wearing stuff you don't want to wear.

For example, I don't wear bright pink. Ever. And I don't plan on wearing any now. Nor do I expect people to form fundraising teams on my behalf, collect donations, buy stuff they would not otherwise buy, or send a single dime to Susan B. Komen. Which is a giant marketing organization that channels some of the money they make to breast cancer research.

Nor am I buying a "natural-looking" wig. For those who know me, I have possibly the most fabulous natural hair that ever a middle-aged lady had -- chestnut brown with layers of light gray and white, and white frontals like angels' wings. Getting a wig that looks anything like this would cost a fortune, and anything less would make me very sad indeed. So if I lose my hair, I'll be getting cheesy wigs in bright colors, like green. But never pink. Lady Gaga can have pink. Heck, I can collect hats for every day of the month.

The whole wig thing is part of the Boobeaucracy.

So is the medical thing whereby the radiologist can't tell you what she thinks of your lump -- no, you have to wait to hear from your Own Doctor. Fortunately, my PCP knows me, so rather than making me book an appointment and all that, she just called me at work, thereby avoiding an attempt to bill my insurer for an office visit. While I expect I'll get a bill for Medical Care, still, she was starving the Boobeaucracy. And even better, she sent me my own path report.

It's not that I think breast cancer research is bad, or fund-raising is bad, or even that bright pink is bad or people who wear wigs are bad. In fact, if I don't wear one it will mostly be out of vanity, not the most attractive of traits. I just object strenuously to being treated like a non-person, dealt with in a lump, branded with pink ribbon, a means to an end. Especially when the end is billing more.

So I think I will be calling the hematological oncologist who I've been seeing to try and discover the cause of my anemia, who now wants me to make an appointment ASAP,  and who found me incredibly boring because there's nothing wrong with my blood, and tell him I only need one medical onc and I'l be seeing one at the Dana Farber, thanks. Because if I'm only interesting to you when I have cancer, then you're part of the Boobeaucracy.

Rage Against the Boobeaucracy, Vol. 1, part 1.

When my PCP called to tell me the not-good news, the first thing she did was try to sign me up for the Breast Clinic at my health plan. But the first thing I did was call my sister. She's an epidemiologist and knows all there is to know about the good and bad of Boston-area hospitals.

And she told me, "No, no -- your health plan won't refer you to the hospitals that are best for breast."

Which is true. BUT! It turns out that Bravest's health insurance, hard-earned right of retirement from 37 years of making sure even people who hate the Gummint have affordable housing, is a PPO plan. I can go anywhere, and work with nearly any doctor, with no penalty. HOTCHA!

Now, while I was figuring this out, the mills of Boobeaucracy were grinding away over at the health plan. And so I got called by a surgeon's office. I told them I was still trying to figure out where I wanted to be treated, and then looked the fellow up on the health plan's own website. And LO! He's not even a breast specialist or a cancer surgeon -- he specializes in vascular surgery.

!!!!!!!!!

So I called them back and told them that wouldn't be happening. And then I called back my PCP, who was more than slightly appalled.

And today, I got a call from the lady in charge of all the insurance biznay at the health plan, who not only affirmed that I get to go where I want and get treatment from who I want, without having to change anything about my other health care, but told me that there was officially Hell To Pay about my bad referral. And then she printed out all my paperwork with her own hands and faxed it to the Dana Farber Clinic, where I have my first appointment on Tuesday.

Score: Lirazel 1, Boobeucracy 0.

Introducing our cast of characters

Lirazel -- an unlikely heroine, she likes to say she lives in a world of allusions.

Lirazel's Left Boob -- the larger of Lirazel's breasts, this blob of femininity is obviously upset that Lirazel doesn't really believe in new bras just for looks. Hence, she is harboring a terrorist.

The Lump -- about a centimeter in diameter, evil in intent, and extremely unwelcome.

Bravest, aka The Bravest Man Alive -- the only person in the world who can tell Lirazel to shut up.

The Wonder Offspring -- Lirazel's son.

WOW -- no, not a game involving orcs and bardic bears. Wonder Offspring's Wife. And definitely WOW.

Little Wonder -- the only grandbaby in the whole wide world. Just ask him.

Other characters will be introduced as they manifest.

Welcome. Well, sorta.

Here we are, born to be kings...

I was diagnosed with breast cancer on Friday, June 17, 2011. So begin the Boob Wars. I am starting this blog mostly because I don't want to fill up my Livejournal with boob war stories, and this is a good way to keep friends and family informed.

If you want to comment, you'll have to fill out one of those forms where they ask you to decipher a cryptic letter. Sorry, I really don't like spam, and a title like Boob Wars is bound to draw a few wierdos.

In our next: I win my first battle with The Boobeaucracy!