The Mysteries

The pathology report is full of mysteries, and the surgeon says, Do you have any questions, secretly hoping that you don't. O please please don't have any questions, she's silently begging, that's why I'm standing up instead of sitting down and not caring what your mother's name is. (Our friend the costumed activist has a sister who's a doctor in a small Northeastern state. Her employer, the largest medical institutition in the state, has informed her that she spends too much time with her patients. And, horror of horrors, she SITS DOWN with patients. Stand up, girl, the bosses are telling her.)
L alleges that the oncologist tomorrow will answer all. We'll see. It makes me angry that the report is deliberately written to obscure. Would it kill them to have a glossary attached? Or to double-space the report so that you'd have room to write notes? I have Stage 2a, which I always thought I had. Why did the physician assistant have to go out of the room and check this? Wouldn't she have it right there at hand? I have lobular carcinoma in situ, which has a 20 percent chance of showing up in the other breast. I also have invasive breast cancer, which is 15 percent likely to show up in the other breast. Are these calculated together or separately, meaning do I have a 35 percent chance of getting some kind of cancer in the other breast? The largest tumor is 4 cm. My tumors dine on estrogen and progesterone. That sort of tumor-diet is more common among the post-menopausal. I am a meno woman, never pausing, bearer of the never-ending period, it flows from a normal cycle into a pseudo-period egged on by the fibroids. Without chemo, I have about a 70 percent chance of not getting cancer again. The thing, Dr. Susan Love points out, is you have to find out what your chances are *with* the chemo and "without* and figure out if chemo's worth the difference. Between each appointment with The Expert, you think: This One will explain all... I think I will get a second chemo opinion.

I still have to wear the damn tubes, which hurt when I walk.

This cancer is starting to wear me down.

11 comments:

Garry Cooper said...

Cancer is like life (in fact, it IS life, growing exponentially): there are no definitive answers, save one, and these days you probably don't want to hear about that one answer.

There's no eternal life and the only salvation is to live this one as well as you can, which entails knowing that the sands are always running out. Cancer is the universe's way of answering our futile and fear-based fantasy that we'll live forever, or at least as long as we deem fit, or wish to. We have forgotten The Fates, who always snip the scissors, though they of course haven't forgotten us. All of which is to say, don't look for completely clear answers and incontrovertible odds from your oncologist. Make the best decision you can, don't look back, and go on living until, in the end, like everyone else, you stop.

Garry, dropping in from www.whirlednewstonight.blogspot.com

Joshua said...

All I have to say is, "Exactly!" It is not enough that you have to deal with one of the most complicated diseases in existence, but the doctors want to play hide and seek with the information. Aren't we too old for that? So is it just they enjoy confusing you, or do they actually not know the answer? Is it a power thing? Am I blogging or commenting on a blog? I'm so confused! Great piece, though.

Susan Messer said...

Well, it's interesting to think that cancer is like life--hard to understand, hard to get clear answers, hard to make decisions about. Still . . . I like the bold, honest, angry voice--not afraid to expect these so-called experts to put out with the expertise.

Maggie said...

Communication is the greatest failing of the medical profession, I think. It's partly because they don't know, combined with feeling like they have to pretend they know everything. If you get an M.D. who says, "I don't know," you've found gold.

BC said...

We expect the doctors to have the answers, but they don't. We want them to just tell us what's wrong and then fix it, but they don't. We're lucky if they take enough time or have the stones to go out on a limb and tell us what they really THINK, based on what they know or don't know, but there is fear...incredible indescribable fear for you in not knowing and fear for THEM that they should make a mistake...oh God, what if I'm wrong?!?

I sat with a woman on the ferry some time back (87 years old) who just started talking. I put down my book and listened, realizing that this would not be a trip that allowed me to read. She had just come from her doctor, the young one ... "I have granchildren older than this one ... how can HE think he has the answers?!?" So we talked a little about her concerns, about the older doctors having the wisdom and experience, but the younger ones being maybe a little more hip to current technologies, and still with something to prove. As the 35 minute trip was ending, we're pulling into the ferry terminal, she is patting me on the arm, saying, "You know, dear ... there's a reason they call it a practice."

There is a link in The Shawshank Redemption that talks about "...get busy livin' or get busy dyin'..."

We think there are a lot of people who would like to be reading your stuff and learning from you for the next 50 years or so. I'm one of them. My wife is too and the dog would be if she knew how to read.

Paula Barvin said...

Sandi, your analogy to a torture victim is so appropriate. But the enemy is not the military. Instead it is cells that have gone bad. To get rid of them, you give up part of yourself. So much of the language of cancer treatment is based on war analogies. Hopefully, the treatment you get will enable you to live alot longer. Best Wishes.

Anonymous said...

Can a patient say to the doc: "Please, take a seat. I may be here a while." Carry a big pen and don't speak too softly!

Jodi Cohen said...

I’m glad the results were what they were and via your weblog have come to learn that there is always another meeting, another piece of the puzzle, another diagnosis to wait for. am glad you are still writing and that you are back at your 'office,' meaning the cafe. jodi

Laurie said...

Care matters. It is so clear and the reserch confirms it.Sandi I so appreciate your authenticity, truth-telling. When I read this I was wrestling with something I was writing and stuck then I got it. Tell the truth ...so I changed the title from "the trauma is in the room to the penis lurking. " Hope you are pleased with how your writing inspired me.

Anonymous said...

I have spent a lot of time in hospitals(also in a fancy hospital) and with doctors helping manage care for my aging parent.In terms of how medical care functions, my experiences match Sandi's. I am always reminded how much we must know about medical care, on a fairly complicated level, in order to get the right care from doctors in and out of hospitals. The kind of information, medical and emotional, Sandi provides is really what some of us may need some day.

susan said...

reading your blog is becoming a ritual for me, and i can only imagine more women would join me if they knew...so i & my beloved husband am spreading the word. i am at the beginning stage of "we found something so let's take samples" I am scared, bewildered but not so alone because you take the time to write.