Chapter Fourteen
What you’ll want to know, what everyone wanted to know, was why. Or maybe how.
Everyone but me.
It’s not that I didn’t care. It’s just that it didn’t matter if there was nothing I could do about it anyway.
Then it turned out that it mattered very much.
The appointment where we found out was stirrup-free.
It was Blankman-free. It was just me and Moth and Dr. Kim, so there was room again for all of us in her office.
We’d decided to walk there instead of making one of the kids come fetch us.
It was only a couple flat miles, and if appointments were going to get more frequent—which by all indications they were—it would be good to move them from my kids’ to-do list to my own.
But it poured on our way, one of those storms that sometimes rain out of clear skies, no gathering clouds, no warning about what was coming.
We arrived soaked through, so it was almost a shame I didn’t even have to get undressed.
Dr. Kim took one look at us and grinned. “What are you two supposed to be?”
It was Friday. The next day was Halloween. She herself—a family doctor who had patients up to seventy-seven years younger than I—was dressed as Little Red Riding Hood.
“Two old people who didn’t think to bring an umbrella,” I said.
“Ahh, very convincing.” She opened a cabinet to a shelf of scratchy white towels and handed over two of them. She also passed us a bucket of trick-or-treat candy. Therefore what came next will be forever connected in my brain with the sticky sweet of over-the-counter chocolate.
“I think I have some answers for you.” Dr. Kim swept her red cloak up behind her so she could sit. I squirmed in my damp clothes. “When you were undergoing treatment for breast cancer, do you remember being part of a drug trial called Protocol 183?”
My heart was racing instantly. I looked at the mini KitKat in my hand and couldn’t think how it had gotten there. “I don’t … There were so many drugs. It was years ago.”
“More than forty of them. Protocol 183 ran from 1980 to 1982.”
“I … can’t remember much about it.” Can’t or won’t?
I asked myself. Or had made it this far by not?
These days it’s all the rage to revisit and explore and come to terms with everything, otherwise you’re repressing, otherwise bad memories will rear up when you least expect and drag you down, like vampires.
Back then, though, the advice was to put it behind you, not to dwell, and that had served me pretty well all these years.
To be called back now of all moments hardly seemed fair.
Not that anything about this situation was fair.
“This was a clinical trial,” Dr. Kim prompted, “in addition to or possibly instead of the regular protocol. There was a lot of extra paperwork. I have it here, in fact.”
She opened a folder in her lap with a thick sheaf of documents, old and faded but bearing, unmistakably, my signature.
“One of the ways doctors and scientists develop and improve treatments is through testing, and one of the ways we test new medications or new combinations of medications is by giving them to patients who weigh the risks against the potential benefits and consent to being part of trials.”
“Human experimentation,” I said, maybe out loud or maybe I was just remembering.
She nodded sort of sideways. “Protocol 183 aimed to evaluate the efficacy and toxicity of two newly developed drugs working together.”
I closed my eyes and tried to remember whether I’d ever known what they were, whether I’d ever even asked.
“Your cancer was what we call estrogen-receptor positive, as the majority of breast cancers are, which means the cancer cells were using your estrogen to grow. Protocol 183 aimed to stop that growth by using two new drugs in combination. One blocked your estrogen and thereby the growth of new cancer cells. This class of drugs is called selective estrogen receptor modulators—SERMs—and they’re still the gold standard in the treatment of ER+ breast cancers.
The other drug was designed to repair and strengthen your DNA in order to support and enhance your body’s ability to fight the disease. Is any of this coming back to you?”
“It was”—I started, lost my way, wandered back again—“a difficult time.”
She leaned forward. “Gene therapies have come a long way. They are now targeted and personalized and precise, but in 1980, scientists were painting with a much wider brush.”
“Wider brush?”
“What is sometimes called ‘best-effort delivery.’ Early DNA therapy was much more limited than we are now as to location precision, dosage, specificity, any number of factors. Basically, the thought was that some control over gene expression was better than none, especially for patients with aggressive or advanced cases.” She was speaking slowly and clearly and carefully, and I was grateful not to be talked down to, but my mind was spinning into knots.
I glanced at Moth. He was white as whipped cream.
“Ninety-seven percent of cancer drug trials are discontinued without the drugs ever reaching the market,” she pushed on, “and this was one of them. For one thing, it did not demonstrate sufficient efficacy compared to existing therapies.”
“I’m not sure I—”
“It didn’t work,” Dr. Kim translated.
“Oh,” I said. “But it must have.” Then I realized something and added, “For me.”
“Or something did,” she hedged. “Some patients in the protocol saw improved outcomes. Some did not. And for some patients, it seemed like Protocol 183 actually accelerated either the spread or the recurrence of their cancers.”
My mouth filled with saliva. “It killed them?”
All these years I’d thought I’d been lucky, so lucky, to have gotten into that trial.
I hadn’t forgotten that gratitude, but I also hadn’t followed the research and development afterward.
I was too busy recovering. I was too busy moving on.
Now it turned out what I’d been lucky about was being among the few for whom it had worked.
“Maybe,” Dr. Kim soft-pedaled, “or maybe the drugs simply didn’t work for them or didn’t work enough.
Or the side effects weren’t tolerated. Or the risks were deemed too high for their particular profile.
For some patients, those risks and side effects were relatively mild and outweighed by benefits or potential benefits.
But for many of them, the complications made continuing in the trial inadvisable or even impossible. ”
“But … what does that …” I wasn’t sure what I was asking.
“SERMs block estrogen receptors,” she explained.
Re-explained. “Doing so also tricks the brain into increasing production of FSH and LH—follicle-stimulating hormone and luteinizing hormone, the key controls of the reproductive cycle. Therefore, in addition to breast cancer treatment, we often prescribe different versions of these drugs to stimulate ovulation.”
She stopped. Hard stopped.
“Stimulate. Ovulation.” If I repeated the words, slowly and carefully, maybe they’d rearrange into sense.
“Say, in patients with irregular menstrual cycles or ovulatory disorders who are having trouble conceiving.”
“Oh.” I saw what she meant. Kind of. “That’s nice.”
“It is.” That sort-of head nod again. “More than nice. Infertility is heartbreaking. Cancer is heartbreaking. Clinical trials—and patients like you who are willing to undergo them—save lives. With any medication, there’s always some level of variation and risk—that’s why drugs come with warning labels and we caution you to be on the lookout for side effects—but with trials, there’s simply not enough information yet to know all the effects and side effects.
We don’t know whether they’ll work to shrink the tumor.
But we also don’t know what impact they’ll have on your healthy cells, in either the immediate or the long term. ”
“But I was fine. I’ve been fine for years. Decades. What does that have to do with now?”
She took a deep breath. “Our working hypothesis, our best guess, is that your very unexpected pregnancy stems from the lingering effects of Protocol 183 on your body, in particular on your DNA.”
“But … no … I. No.” I stopped. Regrouped. Let my head swim for shore. “I don’t think that can be right.” This part I did remember. “They said the opposite.”
She tilted her head. “Who said the opposite of what?”
“The doctors back then. The … everyone. They said the chemo would have negative side effects. Unpredictable negative side effects.” They had made it sound like the storms that brew into hurricanes in the Gulf: wide swaths of destruction, untold devastation.
“That’s sometimes true.” Dr. Kim nodded. “And was more so back then.”
“But about this specifically. They said I might not be able to get pregnant again after. They told me before I started.” Not told.
Warned. Before any treatment, I’d had to decide.
Max was so little we weren’t thinking about another baby, but we weren’t not thinking about it either.
Darcy and Alice were so close, and we worried Max might feel left out.
But it wasn’t a decision. It wasn’t a choice.
Not really. Not when the alternative was what it was.
So I agreed to the unforeseen and unforeseeable.
Of course I did. Surely though that was not this.
“If cancer treatment meant I might have trouble getting pregnant in my thirties, why would that be what makes this impossible thing possible? Why wouldn’t it make it more impossible? ”
I thought Dr. Kim would point out that impossible doesn’t come in degrees, that so many scientific developments are unthinkable right up to the moment they become inevitable, but instead she said, “I’m with you.”
“You are?”
“It does not seem possible. But sometimes in medicine, things that don’t seem possible are true anyway.”