It was a typical day at the new house, which meant I was busy dealing with, variously, Carpenter Guy, Plumber Guy, Handyman Guy and, for a change of pace, Computer Guy, when Dr. James Waisman, otherwise known as Oncologist Guy, called.
"Your tumor markers came back high," he said, referring to a blood test, taken a few days before, that detects a protein made by cancer cells.
"Oh yeah?" I responded, absently juggling the phone while writing checks and pointing. "And high is what?"
"Normal is 0-40. Yours are 252."
"Dear me, that is high," I said, attention having been seized. "And that means what now?"
Yes, gentle reader, it, and I, are back. "It" would be the breast cancer I had diagnosed (I forgo the verb "battled" since, to my way of thinking, all I did was lie back and let stuff be done to me) in 1997 and thought banished forever by July 1998, chronicled right here in a monthly series called "brave and inspirational" by some and "obliviously and freakishly cheerful" by others.
Though my doctors, Waisman and Melvin Silverstein (both once at the Van Nuys-based Breast Center, now still together fighting the good fight at USC Norris' Lee Breast Center) had thought it entirely likely I had seen the back of cancer for good, they had also warned me there were chances of a recurrence. So I'd like to say this wasn't entirely unexpected. But that would be a lie. It was completely unexpected, as was the initial breast cancer.
And I certainly didn't expect Waisman to say what he did--that not only was it back, but it was actually not in the breast but elsewhere--and thus much more difficult to treat.
But after a number of tests--CT, PET (positron emission tomography), bone scan and then way too many needle biopsies under only local anesthetic--it was confirmed; the cancer had returned, and set up shop in my liver. Fortunately, the tumor was tiny, and most of it was blood and not cancer cells, but still. Stage 4 metastasized cancer, they call it (there is no stage 5). All sorts of four-letter words, I call it.
Quickly, let's clear up a misconception: Having breast cancer in your liver means you still have breast cancer, not suddenly liver cancer. Breast cancer is not life threatening while in the breast--breasts are not vital organs except in relation to matters like Pamela Anderson's career. But have it spread to your liver and you learn that 85% of patients die within five years of diagnosis and the rest don't live much longer.
OK, said Waisman upon the confirmation, we are going to go for the home run here--total cure. He thought this possible because of new drugs (and new combinations of drugs), all of which had come into play since I was last treated, and because my cancer seemed confined to a solitary site. And a triple would be what? "We get rid of it, it comes back in five or six years and by then we have the Magic Bullet."
Fine, said my husband, Steve, and I, so what's the plan? A relatively new protocol, combining two different chemos every three weeks.
Day 1 delivers, via IV, Taxotere, a newish chemo that seems to pack a serious wallop but without massive side effects. Starting also that day will be two weeks of oral chemo Xeloda, which also doesn't cause too many problems. A week off, and then repeat, for a total of six rounds.
Hey, that sounds great! we said. Except, he continued, when you combine the two chemos, the results are super-ultra toxic.
Well, of course they are. And that means? Body aches, bad ones. Mouth sores. Fatigue. "But no nausea?" I said, having priorities. No, it doesn't seem to affect the GI tract. Swollen, tingling, peeling hands and feet. But no nausea!
I can do that, I said.
Oh, and uh, just out of curiosity, what if we did nothing? I asked. What are we talking here? "About a year and a half."
Righteo! Here I go! Off to do something! You betcha!
So I did what anybody would do--I dyed my hair platinum. After all, it would fall out before I would have to deal with roots.
Waisman warned me at the outset, this stuff will--and this is the scientific term here--"kick your butt."
Nonsense, I sniffed, not my butt. Nothing kicks my butt. And indeed, I felt rather spiffy for a long time. The regimen didn't seem like much at first. Chemo day passed in an amnesiac blur thanks to the medicinal cocktail that went along with it, as would the following day. Day 3 brought the predicted body aches; think flu aches, only sharper. No matter, my new best friend Vicodin (good enough for certain celebrities, good enough for me) wiped those out.
After a couple of rounds (including an increased dosage of my twice-daily oral chemo), my taste buds took a vacation, and the inside of my mouth grew not exactly mouth sores, but a fuzziness that made everything I ate taste as one would imagine fiberglass insulation tastes. And eating only made my mouth feel like said insulation. Did that stop me from eating? Heck, no; I was also on steroids, which are notorious for causing weight gain, as is chemo in general. And forget the exercise I vowed to maintain; I had swollen legs, feet and hands, and a stiffness that gave me the limping gait of an elderly Quasimodo.
And so, within a short time, there were precisely five items of clothing in my closet I could fit into. Five.
This particular chemo combo also, only in part due to the accompanying pain pills, dulled my brain enough so that, unlike during my previous treatment, I had to stop working for a couple of months. And so we learn one of cancer's dirty little secrets: It's boring. Really boring. I read voraciously because it was a way of passing the time that didn't hurt, and also because it was an escape, but even so--books, pills, figuring out what I could possibly eat that might have taste and wouldn't hurt, making Steve fetch whatever that would be, more books, more pills, naps, and you've got my summer.
On the other hand, I did find dubious entertainment in the spectacle of my fingernails and toenails; another side effect caused each to gradually loosen from the nail bed, oozing disgusting and creative bodily fluids, giving off a smell even more vile, and though none dropped off, precisely, they were only attached by generous definition. I amused myself grossing Steve out by shoving my leprous digits into his face, shouting, "Unclean! Unclean!"
But put all that together--dodgy mental functions, foul nails, no hair, constant mouth grief, and fat--and there came a day I had to admit that while thus far I had at least wrestled the Kick Butt Combo to a draw, it now had me in a chokehold. Which is to say, I cried self-piteously on the phone with my doctor.
"Still, though," said Waisman, "of the five patients I've given this to so far ..." Excuse me, did you say five? "Yes. I told you it was experimental." But you didn't say you had invented it Tuesday! " ... you are handling it the best, if that makes you feel any better." And sadly, it did.
But all good things come to an end, and sometimes with an odd conjunction of events. And so it was the morning of Sept. 11, when I was scheduled for a CT and bone scan (and the following day, a PET scan), to see if those six rounds of chemo had worked. I called the hospital and asked, "Can it be? I should still come in for my tests? The world is coming to an end, should I still bother having tests? Can it matter anymore?"
Yes, they said, and so there it was, a symbol that, in small ways, everything would continue after all, personified by Steve glued to the waiting-room TV, finding out the world's future, while I lay in a humming machine a few feet away having a CT scan, finding out our future. "Like my stuff matters anymore," I said to my friends a week later. "But in case you were wondering, I'm in total remission." And bless them, each and every one shouted hosannas, considering that news one bit of light in a week of impossible dark.
Thanks to early detection (via the tumor markers) and new medication protocols, I have indeed been pushed into total remission. (Most patients who have a recurrence in their liver get, at best, about 50% remission.) As a clincher, I spent another few months on that two-week oral chemo--an extra precaution--keeping my mouth strange and my limbs stiff, swollen and aching, the latter a condition that continues, though considerably decreased, to this day.
Currently I take that newfangled aromatase inhibitor, Femara (like tamoxifen in its estrogen-suppressing qualities, though it appears to be more effective), and once-a-month shots of Lupron, to shut my ovaries down permanently (no estrogen, no estrogen-produced breast cancer, so goes the theory). My figure is gradually being coaxed back from the hinterlands. My formerly wavy hair has returned with a curly vengeance. And my tumor markers, which prompted this whole nonsense, remain in the normal range.
I didn't write all this at the time because, well, I didn't want to bum you out in case the news wasn't good. But it is, and it remains so, 12 months in total remission and counting.
Because I'm not so much back as still here.