Page 45 of Don’t Tell Me How to Die
FORTY-THREE
I woke up Monday morning in a sweat. I’d had a sex dream, and my mind was doing its best to hold on to the details before they slipped away.
The dream camera was overhead, and I could see the teenage me in the back seat of my mother’s red Mustang, screaming, “Yes, yes, yes!” and clawing at the man on top of me.
I’ve had sex in a lot of places, but never in my mother’s car. So I had no idea who the guy was.
It didn’t matter. Whoever he was, he hadn’t gotten me off in the dream, and I needed a man to finish the job.
I put one hand between my legs and reached across the bed for Alex with the other.
He wasn’t there.
I looked at the clock. 6:42 a.m. He was probably downstairs making my tea.
I closed my eyes and started without him. Nothing aggressive. Just enough stimulation to feed the desire in the pit of my stomach.
A minute later he came bounding into the bedroom. He set my mug of tea on the night table and kissed me on the forehead.
“Forget the foreplay and take off those pants,” I said.
“I can’t, babe. A bus overturned on I-eighty-four. Two dead and about forty injured. The state cops are diverting a dozen of them to us. It’s all hands on deck, and I’m captain of the ship.”
Another kiss on the forehead, and he was gone.
I pulled my hand from under the covers, sat up, and swung my legs to the floor. The images of my dream were getting fuzzier and fuzzier, but the desire was still there. My real man was gone, but I still had my old reliable Mr. Plastic Fantastic in my dresser drawer. As long as I had fresh batteries, he never left me hanging.
I picked up my mug, tilted it toward my mouth, and took a few swallows. “Thanks for the tea, Alex,” I said into the ether. “At least you’re good for something in the morning.”
My cell rang, and I jumped like I’d just been caught trash-talking my husband.
I recognized the number, and the dark cloud that had hovered over me all weekend settled onto my shoulders. I answered.
“Maggie, it’s Noah Byrne. Sorry to call so early, but I wanted to get to you before the Monday-morning rush.”
Dr. Byrne had been my mother’s doctor, and for over twenty years he’d been Lizzie’s and mine. He’s from the School of Doctors Don’t Call with Good News. Three times a year his nurse calls me and says, “Your lab results were fine.” A call from Byrne himself could only mean that something was not fine.
“What is it, Noah?”
“Can you come in this morning?” he said.
Bad news, if it’s not that bad, can be conveyed over the phone. Really horrible news is always delivered face-to-face, an outstretched doctor’s hand to hold, a box of tissues on his desk.
“That sounds ominous,” I said.
“Don’t project, Maggie. We’ll talk when you get here. My first patient is at eight. Do you think you can be here before then?”
A half hour later I was in his office. And despite the fact that he’d said, “Don’t project,” I had. And I’d been right.
“The lab here in the hospital gave me the results of your blood test last week,” he said. “I didn’t like what I saw, but I didn’t want to alarm you, so I had Rachel draw a second round and sent them to the Kensington Lab in St. Louis. They’re top of the line. They emailed me the results last night. They’re not good, Maggie.”
He slid a three-page printout of my blood test across the desk and started to take me through it line by line.
“No,” I said, halfway through the first page. I turned the printout over. “Plain English, please.”
“You have the same condition your mother had.”
“How much time do I have?”
“Whoa, Maggie. Slow down. We can fight this.”
“That’s what you told my mother.” As soon as the words came out of my mouth, I regretted saying them. “I’m sorry, Noah. You did everything you could.”
“I wish I could have done more, but you have a better shot than she did. The medical landscape has changed. Chemotherapy has come a long way since your mother’s day.”
“For breast cancer, yes. Every year a million people march to raise money for a cure. But nobody gives a shit about some unpronounceable blood disease they never heard of. The truth is that zero strides have been made since 1997. And I know that for a fact because I’ve consulted another doctor.”
“Who?”
“Dr. Google. According to him, ‘familial HLH is fatal with a survival rate of two to six months. Chemo can temporarily control the disease, but symptoms inevitably return.’”
“So that buys you time, and then we look for other options. There’s a clinical trial for a new drug that?—”
“Do you ever buy lottery tickets?” I said, cutting him off.
“What do you mean?”
“Lottery tickets, Noah. You know—Mega Millions or Powerball.”
“Not often, but when the jackpot is some outrageous amount, I’ll do a ten-dollar quick pick.”
“And once you have the ticket in your pocket, do you think about what you’re going to do with it when you win that outrageous amount of money?”
He smiled. “Virginia and I are doing very well financially. We could win half a billion dollars, and it wouldn’t change our lives that much.”
“So why buy the lottery ticket?”
“Because on the remote chance that we did win, we would open a foundation and give the money to those in need. Maggie, we seem to have gotten away from the matter at hand. Why are we even talking about this?”
“Because I’ve been playing the blood test lottery for over twenty years, and unlike most people, I’m hoping my numbers won’t be drawn. But just like you, Virginia, and everyone else, I’ve dreamt of what I would do if I were unlucky enough to hit the hemophagocytic lymphohistiocytosis jackpot.”
“And what is that?”
“I will not go through what my mother went through. The chemo drained her dry and left her in a state of constant fatigue. I watched it, and I don’t want my children to watch it happen to me. And I definitely don’t want to be part of a clinical trial for a new wonder drug and hope that (a) it really does work and (b) I’m not part of the 50 percent who are popping sugar pills.
“Mom’s biggest regret was that she wasted the last few remaining months of her life looking for medical miracles. I’m doing what she wished she had done. I accept that I have a fatal disease, and I want to live my life out enjoying my husband, my kids, my friends, and my family, and if I’m lucky, doing something for the people of Heartstone that I can be remembered for.”
“Fair enough,” he said.
“You’re not going to try to talk me out of it?”
“No. You’re not the first patient to opt out of treatment because they feel the downside far outweighs the possible good it could do. I respect your decision, and I admire your ability to accept the diagnosis with such grace. Clearly you are Kate McCormick’s daughter.”
“Thank you,” I said. “That’s the nicest thing you’ve said to me all morning.”
He smiled. “Would you like me to go with you when you tell Alex?”
“No. He’s got a lot on his plate, and this morning he added a busload of crash victims. I’ll tell him when the time is right, so I’m invoking our doctor-patient confidentiality agreement.”
“I will try to talk you out of this one. Keeping this kind of news from your husband is a slippery slope. I can keep your records confidential for now, so Alex can’t access them, but eventually you’re going to tell him, and he’s going to ask you, me, or both of us how long you’ve known about this. The longer you wait, the more hurt and angry he’ll be.”
“I know that. But I also know that if I tell him immediately, he will be just as devastated. You know Alex as a coolheaded physician and a rock-solid hospital CEO, but he has abandonment issues. It may have something to do with the fact that his birth mother left him at a fire station.
“He totally lost his bearings when Justin Theobald died. If I tell him I’m dying, he’ll be useless to the hospital, to the kids, and to me. I’ll go from wife, lover, and life partner to patient. Terminal patient. Once he knows he’s going to lose me, the two of us as a couple will never be the same.” I picked up the blood test printout and waved it at him. “For now, Noah, this is just between you, me, and HIPAA.”
Byrne is an old hand at this game. Once I played the HIPAA card, he knew it was over.
“I don’t agree with your decision,” he said. “But I’ll honor it.”
I left his office, got behind the wheel of my car, stared out at the gray-blue early-morning sky, and let the news wash over me.
I’d often wondered what I’d do or how I’d feel if this day ever came to pass.
I’ll probably get drunk, I thought. Or stoned. Or both.
But now that the moment was here, I had no desire for a drink or a joint.
I only wanted one thing. A man to hold me, his arms wrapped tightly around me, my tears on his warm, strong shoulders.
My husband wasn’t available. But I knew someone who was.
I took out my phone and dialed his number.
He picked up on the first ring.
“Hello, Van,” I said.