A Series of Catastrophes and Miracles

by Mary Elizabeth Williams

  For a while in my support group, there was a young mom named Daisy. Daisy had a rare form of sarcoma. She stopped coming when she got too sick. She said the travel was making her tired. She used to say that if you combined all the uncommon cancers, you’d have about a quarter of all cancers diagnosed. Hers was one of the ones they don’t do much about. Only a few hundred or so people are diagnosed with it every year, and it takes a lot of money to develop drugs. Rarer cancers, with a smaller pool of patients, face the additional challenge of being harder to recruit subjects for clinical trials as well.

  “I’m not unbiased,” James Allison says, “but what’s going to slow things up is not scientific advancements. It’s going to be what it takes to get approved. With ipi, there were three objective responders in the Phase 1. You didn’t need an 800-person trial. The same thing is happening now.” However rare the cancer—however uniquely each different type behaves—he says, “Cancer is cancer. What is it going to take to say, ‘Why do you have to do trials in every single tumor type before you approve a treatment?’ There is no reason.” He pauses. “Something’s got to change. We know these drugs work.”

  CHAPTER 25

  O-o-h Child

  April 19, 2014

  I am on the BoltBus down to Philly. I am the oldest person by decades and the only one not charging a device in the seat in front of her. I am instead staring out the window as the exits of New Jersey go by, wondering what to say when I see Debbie.

  It’s been a bad spring for her. It was a bad winter too. Come to think of it, the fall was pretty harrowing too. She’s had multiple new problems requiring multiple hospital stays. She has trouble eating. A few weeks ago she texted Jill and me a photograph of what she fancifully described as “all the beer they had to tap from my gut.” It was two liters of brown fluid.

  Then in late March we got the email. “Saw the big doc today and he confirmed what we kind of knew already. Scans show tumors have gotten larger and there are new growths on the peritoneal lining. Surgery not an option. We will change chemo drug and keep doing Avastin with the hope of slowing the progression of the bad shit. Good news is we went for a nice pizza afterward and I ate two slices without my stomach rebelling.”

  She didn’t have to say any more. Surgery not an option. Slowing the progression. She has had six different kinds of chemo, multiple surgeries. This will not be a story that has a miraculous outcome. She told me, “Our tiny brains are still trying to process, and our default coping skill seems to be dark humor. I knew when I sent out that message I’d get lots of love back, so I guess that’s what we need.” Then she added, “Well, that and a miracle drug for rotten lady parts.” She told me not to send her any cancer presents. She just wants to be a normal person who isn’t reminded that she’s got no more options.

  Last week Debbie was in the ER with blocked kidneys, cheerfully texting Jill and me, “No wonder I was hurting” after she got stents in both sides and a tube in her back. She had to stay a few days to stabilize. Then, because she’s a badass, she and Mike and the kids went to Puerto Rico for a long weekend.

  Now it’s supposed to be celebration time. Jill is up from Miami for her birthday, along with Michele and their beautiful toddler daughter, Jae. We had tentatively planned to go to the Barnes Foundation in the afternoon, and then out for a birthday dinner with friends and family. We already knew it was a long shot, but then yesterday Debbie texted us that she’d been violently sick all day from the new chemo. When I get off the bus, Jill calls to say that the plans have been scaled back again.

  “Deb’s feeling better but she’s still wiped out,” she says. “She still really wants us to see the Barnes.” Debbie’s degree is in art. When we were in college, we’d go to museums together and she’d explain all the paintings to me. Everything I know about allegory comes from her. “Michele will take care of Jae,” Jill continues, “you and I will do the Barnes, and then we’ll go out to visit Debbie. I canceled the restaurant reservation and told everybody it’s off. We’ll just hang out.”

  It is a sharply beautiful morning as I walk over toward Jill and Michele’s hotel. After the longest, coldest, iciest winter I can ever recall enduring, the streets of Philadelphia are a sea of trees with white buds. There is not a cloud in the sky. It’s Jill’s birthday party day, and when we see each other we just sadly put our arms around each other. We go the Barnes and look at incredible, deeply moving art. And then we drive out to Deb’s house in Media.

  When she comes out to greet us, Debbie doesn’t seem weak or in pain, but she looks unmistakably fragile. There’s a short crop of graying hair on her head. “I have no ass,” she says. “My ass is completely gone.” It’s true. Her stomach is swollen somewhat—it’s a relatively calm day for the ascites—but her backside is nonexistent. “It hurts when I sit down because there’s nothing there,” she says. “I had to order some butt padding. Then I’m going to get some fake eyelashes and hit the drag circuit.”

  “Are you really up for this?” I ask. She’d originally invited me to stay at her house, but now I question whether that’s too much for the family. “We can hang out, then I can go back up tonight. Or I can stay in town at a hotel. It’s no big deal.”

  “Oh, would you just shut up already?” she says, so I shut up.

  Jill, Deb, and I sit outside awhile—Deb with a cushion underneath her bony ass—taking in the sunlight and talking about our kids. Then we go and nest together on the couch and watch movies like kids at a slumber party, pausing only to order Japanese food. Debbie eats a few bites of noodles and proudly declares, “Hey, I did well.” The bar for victory changes, every day, when you have a cancer you’re not returning from.

  “Are you scared,” she asks as I suck on salty edamame, “that yours will come back too?”

  I shake my head. “Not much anymore,” I reply truthfully. “Sometimes I think about it when my skin graft feels tender or I can’t remember if I’ve always had some mole. But otherwise, not really.”

  It’s now been over two years since I presented any evidence of disease. That’s a big milestone, one I’ve been hanging on to, because a cancer researcher once told me at a fancy party that “when patients make it two years, it’s usually not coming back.” Dr. Wolchok has told me, “All we know is that your scans don’t find any abnormalities in the areas where they were before. We don’t see anything on the skin, and we don’t see anything new happening. So is it possible that every last melanoma cell has been eradicated? It sure is. Can I put my hand on the Bible and say I know that? All we may have accomplished is to get your immune system to recognize the melanoma as being something dangerous and control it. You may live for another hundred years with your immune system holding back whatever melanoma cells are left in your body. And if they don’t learn to do any new tricks, then so be it.”

  For Debbie, though, this isn’t the experience. She’s had nothing but recurrences; she’s had one tumor so tenacious and troublesome she’s nicknamed it Rasputin.

  “How can you not be afraid?” she asks.

  “Same way I’m not afraid of getting polio,” I say. “I feel like I got the boost. I think it might really be over.”

  She looks at me in bogglement. She’s spent the past three and a half years having cancer keep coming back. “Damn,” she says. Then she adds, “One of my chemo friends died this week.” She says it matter-of-factly, so I try to reply in a nonhysterical way.

  “Well that stinks,” I say.

  “Yeah, it does,” she says. “We went in for chemo together as usual on Monday, and when I went in on Wednesday, they told me she was gone. So now I don’t have my little friend anymore.” She reveals this information like she’s saying that they ran out of Charmin at the Grand Union. I know what she’s really telling me. This is how it can happen. It happened to someone she cared about and it’s a loss, and it also raises the inevitable question—is this what it’ll be like for me?

  “What’d you do when they told you?” I ask.

&
nbsp; “I thought, Oh shit,” she replies, which is an entirely reasonable and appropriate response. “They’re going to give me radiation to shrink Rasputin,” she continues, quickly adding, “but it’s not to try to cure me. It’s just to deal with the pain and pressure.”

  “Does it hurt?” I ask. It’s late-stage cancer. Can it not?

  “It’s like it’s constantly pushing down on me, so yeah, I guess so,” she replies, ever stoic. She’s been working with the palliative care team and is noncoincidentally more relaxed sounding about her care than I’ve heard her in a very long time. “You tell them what’s hurting and they actually listen to you and try to make it better,” she says.

  “Radical,” I say.

  The next day we go for a walk. Her whole neighborhood is nothing but pink cherry blossoms and yellow forsythia as we amble around saying hello to all the neighbors out gardening and playing with their children. “I just need to survive the school year,” she says, and I cannot tell if she means that in the metaphoric or literal way.

  In the late afternoon, we sit in her car at the station while we wait for my train to Philly to pull in, putting off our goodbye until the last possible moment. “Promise me,” she says, “that if anybody ever says that I lost a battle, you will kick their ass.”

  “So hard,” I say. I don’t know anyone in the world who’s stronger or more positive or unloser-like than Debbie. And if you think it takes guts to survive cancer, I defy you to understand how much it takes to go through it when there’s nothing more to be done. “Anything else I can do in the meantime?” I ask.

  “Yeah,” she says. “Why don’t you and Jeff come down this summer for a weekend? We’ll send the kids to my parents’, and we’ll all stay in the city overnight. Find a nice hotel. One with a pool.”

  “I’d love that,” I say.

  Then a distant whistle tells us my train is approaching. I get to be called a survivor. She’s worried she’ll be considered a failure. We took care of ourselves and kept our doctor appointments. The outcomes are different anyway. That’s not my victory or her defeat; that’s just biology and science. And today’s answer to “Why me?” is “Why not her?”

  “That’s my ride,” I say.

  “Right,” she answers.

  Before we had our boyfriends, before we had our marriages, before our children, Debbie and I had each other. We were going to have each other always. I get out of the car and step to the train. I find a seat near the window and hold my hand up to it. She holds up her hand in return, unmoving as the train reels me away from her.

  The following weekend, because life is circular, I am at a baby shower for some friends who live in a hip, quaint small town farther up along the Hudson River. They moved there for the quiet and beauty—and the proximity to West Point. Father-to-be Isaac is an Army man, a combat veteran whose stints were nearly 20 years apart, from Desert Storm and the notorious Highway to Hell to the more recent conflict in Iraq. After he came home from his second deployment, he grappled with heavy post-traumatic stress that took a long process of intense work to overcome. Isaac is courteous and smart, and when it comes to understanding what it’s like to go through something unfathomable and come out grateful and deeply affected, he really gets it. I would never presume to know what Isaac’s been through, but we share a respect for the toll that trauma can take.

  The whole baby shower is a beautiful, joyful experience, a celebration of a long-wished-for and already deeply loved child. The bonus for me is when Isaac drives me to the station and he doesn’t think I’m crazy when the act of sitting in a car and waiting for a train again so soon after seeing Debbie makes me break down.

  “I feel so guilty,” I say, snuffling in the parking lot. “I feel guilty that I get to go on and she doesn’t. I feel guilty that her situation kicks up all of my own stuff, and then I get upset about my experience when I ought to just be upset about hers. I know she wouldn’t want me to beat myself up, but I can’t help it. It’s all random and it’s terrible and I feel like I’m doing it wrong.”

  He nods knowingly. “For me, warfare and combat are the worst things I’ve gone through,” he says. “It ruins you in a lot of ways. That’s the thing I didn’t realize. You can’t walk away without a scar. I think a lot of people don’t get that. It’s just whether you can see the scar. People say you look like the guy who left, but you came back different.” I remember how Leo said the same thing.

  August 16, 2014

  It’s early morning, and Jeff and I are headed toward the BoltBus, on our way to a romantic couples getaway weekend in Philadelphia to see our dying friend.

  Just as Debbie had suggested, I had booked the nice hotel with a swimming pool for two couples, knowing full well Mike and Debbie wouldn’t make it. Jill and Michele are back in town too, so I’d made the dinner reservations for six at Cathy’s restaurant, suspecting that we’d have to cancel. Still, it felt good to hope for a while. It felt good to arrange things and to tell Debbie things had been arranged. She was in the hospital again a few weeks ago, when the pain in her kidneys became excruciating on the drive back from their family vacation in Vermont. She was in the hospital again this week with her kidneys. She’s got a little bag now.

  There will be no swimming pool. There will be no dinner for six. Jill saw Debbie yesterday and says that she is considerably weaker now, and that we may get only a few minutes with her. We’re coming with no expectations and no plans other than to give her whatever she needs, whatever she wants. The only thing Jeff and I know for sure is that we’re going to go out to her house, and maybe we’ll spend some time with her or maybe we won’t be able to or maybe we have no idea how this is going to unfold at all.

  Jeff and I stand together in the early morning light of the deli by the bus stop, paying for our iced coffees. “Fancy” is playing on the radio, and I consider that I am never going to hear this song again without thinking of the last time I see my friend, and how absurd and funny that is. Jeff looks at his watch and signals that we’ve got to get a move on. “This is going be hard and sad,” he says, “but we’re going to do it because that’s what Debbie deserves.” And because we both know it will be special and beautiful too.

  Though it’s only a half-mile walk from the suburban station to their house, Mike insists on picking us up at the train. “How’s it going?” he asks, and we make pleasant conversation during the short ride, Mike waving at neighbors the whole way.

  When we pull in to the drive, Debbie’s son Adam is on the front lawn tossing around a ball with Michele, while her daughter, Jae, scampers between them. “Over here,” someone calls from inside. “We’re this way!” I recognize the sound of Jill’s voice. We follow it over to the sunroom at the side of the house.

  Debbie is sitting on the couch facing the trees. She is propped up on a multitude of cushions, her head resting against a small pillow. It’s late summer, but she is wearing a sweatshirt and is covered in a blanket. Yet even under all her layers, it’s clear she’s all skin and bones. The soft covering of hair is still on her head, though.

  Yesterday she’d been upstairs in bed when Jill and Michele had come to visit. She gets downstairs only once a day now, if that often. But she didn’t like the idea of receiving guests today like a bedridden Colette. She made the effort, the long journey from her bed into the hall and down the stairs and through the living room all the way here, so she could sit with us on an August day in the sun like a normal person.

  She smiles when she sees us, and I lean down to give her a gentle kiss. “Dude,” I say.

  “Dude,” she replies.

  Mike leaves the room and comes back a few minutes later bearing a pitcher of iced tea and a tray of cheese, crackers, and fruit.

  “Can you make me a little plate?” Debbie asks, and he puts together a small sampling that she nibbles on slowly. Mike looks at the dainty array of foods with a gaze of mild dissatisfaction.

  “Have you ever had a real Philly cheesesteak?” he asks Jeff, who shakes
his head no. “I know the best place.”

  “Velveeta or provolone?” I ask.

  Mike regards me like I’m a philistine. “Provolone,” he replies, “of course,” and then he and Jeff take off in the direction of Mama’s in Bala Cynwyd for what I hope is some worthwhile caretaker bonding over meat and melted cheese. I’m glad they’re getting that, and that Jill, Deb, and I can get some trio time. One last time.

  “I can’t believe our kids are starting high school in two weeks,” I say to Deb. We’ve always been in sync; our firstborns came into the world five days apart. “You’d have liked Lucy’s middle school graduation,” I tell her. “They played the theme from Star Wars.”

  “When I went to Tim’s,” she says, “I was all ready to be emotional. I brought tissues, thinking I’d be crying because I won’t be there for his high school graduation. Then I didn’t and it made me mad.”

  “I hate getting psyched up for a good cry that doesn’t happen,” I say.

  We spend the afternoon conversing together in much the same fashion, watching the sunlight move across Debbie and Mike’s garden. At one point, Debbie’s parents drop by to catch up and to show off the photo album Debbie recently made for their 50th wedding anniversary. Tim and Adam periodically pop their heads in to check on their mother and her guests. Michele and Jae run in and out between the front yard and the chicken coop in the back. The entire time is loose and unstructured and open-ended, just talking about our children and the recent Gay Games. There is nowhere else to be than right here, with each other, today.