Tuesday, May 11, 2010

Do You Want to Go for a Ride?

I am two years and six weeks old. I am lying on a strange, high bed set outside a door in a long, gray corridor full of doors. Suddenly, a dark-haired young man in a white coat looms over me. His face is marked by disapproval, and a little alarm. His expression voicelessly rebukes me: "Why aren't you asleep?" (I know this grownup look.) He recovers himself, applies a smirk, and says to me, "Little girl, do you want to go for a ride?"

"Do I have any choice?" I think to myself.

I don't. I'm about to be taken to surgery to remove a benign cyst that has closed my left eye. I am not aware of this, or I had forgotten it, but I yield where I cannot rebel. More young men in white coats come, the high bed turns out to have wheels, and off I go.

Yesterday afternoon I had my first follow-up appointment with Dr. C, my gynecologic oncologist. Though nobody told me this ahead of time, I figured the agenda would cover checking up on how I'm doing post-op and discussing my further treatment.

I've been remarkably free of what is called "cancerhead"-- uncontrolled and fearful obsessing over one's cancer and its implications. But going into this appointment, I had three things I hoped would happen or that I would not have to face.

First, that I could ask my surgeon how my ovarian tumor came to rupture without coming across as judgemental or as casting aspersions on his competence.

Second, that he would not, in anywise, suggest or recommend radiation therapy. It's one thing if you're fighting breast cancer, but there's too much essential equipment in the abdomen that can get permanently fried. And according to accounts I've read online written by women who have gotten radiation for ovarian cancer, at some point in the process they administer the treatment by way of rods put up your . . . well, you know. O noes!! Du nawt want!!!

And third, that it would all be straightforward and conventional and I wouldn't have to make any hard choices. Did I want to go for a ride? I don't know, you're the prominent gynecologic oncologist, you tell me!

It worked out well that Ellen*, the friend who drove me to the doctor's office, is a Registered Nurse-- not in oncology, true, but knowledgeable and able to take notes while I asked questions. Did I want her in the exam room with me? You better believe I did.

So there we are, waiting, and in comes Dr. C wearing a bolo tie. Don't mess with Texas? He grins and says, "Boy, you just have to cause trouble!"

"Yeah, gotta be original!" I quipped back.

How original I am, he was about to tell me, right after my exam. Seems that when they got me open, they found that the tumorous ovary was lying on top of a sac of clear yellow serous fluid-- "It looked like pee, if you want to know." The ovary was adhered to it and it was adhered to the tissue below/anterior to it-- "Like endometriosis-- I had a terrible time getting it all off." It was this sac of liquid that ruptured; the problem ovary itself came away whole. And the quandary is, was that sac part of the tumor or something entirely separate stuck to it? The serum in it looked nothing like what was in the ovary (which Dr. C said "Was full of brown sludge.") And when the lab tested some of the serous fluid, it came up clear of cancer cells.

So that took care of concern No. 1. I'd figured adhesions came into it . . . Could that have been the septation Dr. P my gynecologist had shown me on the sonogram in February? "Oh, that ovary was full of septations. Like a bunch of grapes inside." But attached like a bubble head out the end of it? No, Dr. C didn't see anything like that. "Could what we saw have been this sac behind the ovary and on the sonogram it looked like it was in the same plane?" "Very possibly."

Which led us to the question of what to do about it all. "You've got a choice," my surgeon said, "And there's no right answer." **

Oh, no!!! You're just supposed to tell me what to dooooo!!!!! . . . Take me and my gurney and just wheel me down the hall!!

"Here's your choices. We can assume that the fluid under the ovary had nothing to do with it and the cancer was restricted to the ovary. The lab had to take several sections before they found the cancer in it. That would put you at Stage 1A. The tumor was Grade 1, very well differentiated, and that's the least aggressive kind. Chemotherapy would make no difference in your prognosis, the surgery took care of it all. We'd just monitor you every three months with a CT scan, an office exam, and a CA-125 test. And you'd watch to see how you felt and if you had any symptoms. Then we'd go to six months if there was no sign of recurrence, until you were five years out.

"Or . . . we can assume that the sac we found was part of the tumor, and since it ruptured, that puts you at 1C. A third of the time a test of fluids can come up showing no cancer cells but cancer is present. You can do chemotherapy to make sure there's no cancer in you, and again, we'd do the tests and watch and see."

He paused. "So what do you want to do?"

Oh, phooey. So this time I have a choice whether I want it or not.

Dr. C said that even at Stage 1C, the recurrence rate is really low, only 10% - 15%. "The probability is that you are cured."

He went on to say, "Now, chemo is poison. It's there to kill the cancer cells. It will kill healthy cells as well. But if you do chemo, things go back to normal. But with radiation, the damage is done and can't be undone. And there's a lot in your abdomen that can be damaged." In other words, radiation is not indicated for me-- yay!!!!

"It's up to you whether you want to do chemo or just watch and see."

I felt myself poised at the brink. I flirted with the idea that I could take my chances and not have to undergo the expense and rigors of chemotherapy after all. A reprieve?

But what if I was wrong?

I asked more questions and Ellen did, too. Dr. C said, "Have you ever heard of the term 'analysis of errors'?"

Ellen had; I had not. "No . . . is that like Worst-Case Scenario?"

"Not exactly. It's considering what could happen if you make the wrong decision. If you do chemo and there was no cancer there anyway, you've gone through all the stress of chemo for nothing. But you'll never know that."

"Like, 'See how great my elephant repellant works-- we never have elephants around here at all!'"

"Exactly. And if you don't do chemo and the cancer does come back . . . We couldn't talk about a cure anymore. The cure rate for recurrance is only 3 to 5%. "

Oh! I'd say that was a piece of information I needed . . .

"I'd be in remission only?"

"Yes, and remission for ovarian cancer would probably get you only two and a half more years. We can't just go in and take a tumor out. When ovarian cancer remanifests itself, it's all over the abdomen. Have you ever seen algae on a pond?"


"It looks like pond scum. It covers everything. We can do our best, but we can't get it all." And if I understood him right, at that stage you can't use the first line platinum-based chemo drugs, because the cancer will have developed a resistance. Or was he conflating this with what happens if one does chemo and it comes back anyway?

He explained that the metastasized cancer covers the organs and keeps them from reasbsorbing the four to five liters of fluid that wash through everyone's bellies every day. Which is why women with advanced ovarian cancer bloat up. "It's called ascites."

"Was that sac of fluid you found in me ascites?"

"No, no sign of ascites in you."

We asked more questions. He said they've developed good anti-nausea drugs that you get before chemo. "They make you drowsy, so most women just sleep through the therapy. Afterwards-- it depends on each person, you'll probably feel like you're getting over the flu for the next couple of days."

Ellen said, "I've had patients who've asked me, 'Is there alternative medicine for this?'"

"If there was, we'd give it," Dr. C answered her. "The alternative is, you can die."

More questions, more answers, more going over and clarifying what had been said before. Talked about statistics: Every year (in America?), about 20,000 women get ovarian cancer and in the same year 16,000 or so will succumb to it. And about odds and percentages. One can play them when dealing with large groups, but when it comes down to oneself, the odds are either 0 or 100%.

If it were to come back, my kind of ovarian cancer would recur somewhere in the abdomen. It isn't metastasized through the bloodstream, so it wouldn't go to the brain or bones or wherever.

Some comfort, when you consider all the damage it would do in one's midsection! Though maybe it's good to limit the twinges one could get cancerhead about.

For me, though, the fact that my cancer was caught at Stage 1 weighs heavily towards total cure, whichever way I would decide. Unlike for 80% of ovarian cancer patients, who aren't detected until they're Stage 3 or 4.

Finally, Dr. C looked me in the eye and said, "All right, do you want to do chemotherapy?"

I looked back at him and said slowly (and I thought, meaningfully), "I don't want to do chemo . . . "

"All right," he said briskly. "That's your decision."

"No, listen--"

"No 'buts'!"

"No, listen! Do I want to do chemotherapy? No, I do not. Do I think it might be wise to do chemo? Yes. Do I think the consequences of not doing it now and wishing later I had are too great? Yes, I do. So yeah, even though I don't want to, yeah, I'm going to do it."

Sheesh! Enough with the drama already! I didn't want to get ovarian cancer, either, but I've got it-- or at least, I need to make damn sure I've no longer got it-- so I have to deal with it, whether I want to or not.

Dr. C told me what it would be, and it was very familiar from my on-line reading. Six courses of Carboplatin/Taxol, one every three weeks. Happily, there's a UPMC chemo center a mile and a half from me, so I won't have to get a ride downtown. "The chemo's the same everywhere in the hospital system, no matter where you get it." He'd have his nurse look up the number and get in touch with the chemo doctors to set up an initial appointment.

I asked, oh yes, what about leukemia as a side effect? Ah. That's a danger for very young women, in their teens and early twenties, whose blood cells are still developing. (Or something of the sort.) "You're still young," he allowed, "but I think you're a little past that!"

Yeah, I'm not a little girl anymore. And this time, when the medical guy asked did I want to go for a ride, I did have a choice in the matter. Later this summer when my hair has fallen out and I'm feeling groggy and grotty and my mouth tastes like old aluminum, I may temporarily regret my decision. But given the fact that I've got my support system and my financial aid in place and my momentum's going, and given the consequences of being wrong, I think I've made the right one.

**Some dialogue word-for-word; other parts reconstructed or conflated.


peg said...

Yep,pretty much what it feels like.
As a suggestion,don't eat your favorite food 2 days before chemo-
also,some things you've always liked will make you ill.. I've been there,done that~ask me what you will.. Oh,the holes in my brain seem to be closing up..

St. Blogwen said...

Woot! Glad to know the chemo brain leaks are closing!

Yeah, that's what I've heard, about the eating. That if you mix it with your chemo, as it were, you'll never like that food again. Though I heard don't eat it the night of. What is it about it that takes two days for the aversion to set in, I wonder?

If you're up to doing me a hat, I was thinking off-white, or sage green, since it will be summer. Would it be cotton? Do you do berets? It'll be lovely, whatever you choose!

peg said...

The hats are kinda "watchman"type.
Most of the yarn I have is acrilic,and some very nice mohair mix,but you're right,summer hats need to be cotton.. Let me dig thro my stash and see what I've got..Got 3 BIG plastic boxes of yarn,so I forget what I do and don't have..
Don't know why 2 days,but that's the way it was for me.

peg said...

I keep forgeting to give you this tip..You will get "thrush" a mouth infection. Dr will give you some "swish&spit" antibiotics. Also get kids mouthwash. It helps and doesn't sting the cracks in your mouth.. BT,DT..

peg said...

And--while you'r going thro this,please think on this..A friend of mine had/has overian cancer. Caught much later than yours. she's in her early 70s. Due to the kind of insurance she had,she had to work all thro 2 treatments-in the deli hotside at HEB. Yes,they worked around her,giving her jobs sitting giving out samples..But I could not imagin~~ I am soo lucky!