My Wife Said You May Want to Marry Me

by Jason B. Rosenthal

  Her Facebook post read, “Would you like to be my ‘plus one’ at the Library of Congress National Book Festival gala dinner on Friday night, September 4th? I was told I could bring a guest and thought it would be fun to offer up the opportunity to a nice, book-loving human in the DC area. To put your name in the hat, simply chime in in the comment section by Wednesday 5PM CST . . .”

  The winner, a lovely woman from Virginia, told me later that going to this event with Amy was “one of the most exciting days of my life.” She also said that Amy had to excuse herself at one point because she was having stomach discomfort and needed to pick up some over-the-counter medication, something that I didn’t learn until much later.

  The next day, September 6, 2015, Amy called me before she boarded the plane for her scheduled flight home to Chicago. She was having pain in her right side, and she’d called her doctor, who suggested I take her to the emergency room when she got back.

  It shook me up—twenty-six years together, and this was a first. I tried to ease Amy’s mind, and mine, by theorizing that it was probably appendicitis.

  I picked her up at the airport and drove her straight to the emergency room at Northwestern Memorial Hospital. After the obligatory hours of waiting, waiting, several diagnostic tests, and waiting, a baby-faced emergency room doctor sat us down to give us the results of the scan he’d ordered.

  Yes, he said, the appendix was involved, but what was going on had nothing to do with appendicitis. Instead, Amy’s appendix was mildly thickened with multiple nodules. Her lymph nodes, which he defined as a network of small structures throughout the body that filter fluids to help minimize toxins and neutralize infection, were enlarged. The liver was involved too.

  It was obvious that this doctor hadn’t had much experience at delivering upsetting news to patients. He was as nervous as we were, and to get it over with, he just kind of blurted out the word he’d been leading up to: “Tumor.”

  That word invaded Amy’s body as well as our lives.

  It seemed the scan was “suggestive” of a tumor, and she needed to get more testing right away.

  What? What?!

  We were completely silent for most of the drive home as the news set in. My mind was unsuccessfully scrambling to think of something wise, positive, and optimistic that I could say without my voice breaking. Amy was slowly letting her emotions catch up with the news that had just blindsided us.

  It didn’t really come crashing down on us until we got out of the car, grabbed Amy’s luggage from her DC trip, and walked through our front door into the deafening stillness of our empty nest.

  Part II

  Loss

  5

  Something Is Not Right

  We are secrets to each other

  Each one’s life a novel

  No one else has read.

  Even joined in the bonds of love

  We’re linked to one another

  By such slender threads.

  —Neil Peart*

  Amy was freakishly gifted at wordplay, automatically and almost involuntarily seeing letters within words that formed other words. She saw an Exit sign and thought how nice it would be to have it read “Excite” instead. She thought “creation” was a stimulating, active, valuable time investment, as opposed to “reaction,” which contains exactly the same letters and implies letting other people dictate how you’re going to spend your life. The rest of us Rosenthals kept trying to pick up the skill, but even when it was staring us right in the face, we couldn’t hold a candle to her.

  But how much would we have given for her diagnosis to have been acne, tucked neatly into cancer, this abhorrent new word in our vocabulary?

  We immediately reached out to our considerable network to get the names of the best and the brightest oncology surgeons in the country. It turned out that two of them were right here in Chicago. We went to an appointment with the first of them on September 8, 2015, when the phrase “suspicious for metastasis” (aka “the cancer appears to be spreading”) entered our vernacular.

  Our second appointment was with the renowned Ernst Lengyel, MD, PhD, an expert in ovarian, cervical, and endometrial cancers, which was where our journey began in Ernst (I try, Amy). We went to see Dr. Lengyel on September 11, 2015, at the University of Chicago in Hyde Park, which soon become our new home away from home.

  Surgery was scheduled just a few days later, on September 16, 2015. It was time to start notifying children and family, but that came with its own set of baffling questions—most notably, just how exactly were we supposed to give people this news out of nowhere? Of course, Amy and I hadn’t been prepared either, but at least we’d been in the room(s) as the awful events unfolded and had had a chance to start processing them, together. Picking up the phone and calling with terrible news just felt so daunting.

  Still, it’s not until you’re tested by life like this that you truly understand what it means to have a family that supports you no matter what. In addition to her exceptional parents, Amy’s siblings were critical pieces of our lives. By this point, all three of her siblings had married people who were spectacular in their own right. Adding to the embarrassment of riches, there are twelve cousins (and some stepcousins) in the family, all of whom are connected to us and each other like (to stay with the medical theme) vertebrae. On my side, my sister Michel, who also lives in Chicago, is brilliant, creative, and loyal to me, Amy, and her nieces and nephews. My brother Tony—from my dad’s second marriage but truly my brother—and his wife manage to stay very connected and generous to Amy, me, and our children from their home in New York. Our parents are different but incredibly alike, in that they each adored their offsprings’ choices of mates so much that they considered Amy and me to be their very own kids.

  We made it through those calls somehow, and of course received nothing but love and support and the reassurance that we were all in this together. Then we took a moment to brace ourselves for what was coming next.

  There are a few challenges in life that seem unbearable, but is there one more daunting than having to tell our children that their mother has ovarian cancer? Even as I write that, I’m aware of how shortsighted it is. Men and women much braver than I risk their lives every day in defense of this country, and some of them never make it home. Jerry Sittser, author of the beautiful memoir A Grace Disguised, suffered a challenge when three generations of his family died instantly in a car crash. Even so, there was still no way around it—picking up the phone that day, and hiding my dread from Amy as best I could so she wouldn’t have the added burden of comforting me, was the toughest test I ever thought I’d be faced with in my privileged lifetime.

  We set up a conference call for all of us, kept our voices calm and confident, and filled them in on everything, from their mom’s diagnosis to as many details as we knew about her upcoming surgery.

  They were amazing—shocked, of course, and sad, and frightened, and completely thrown; but during our time with them on the phone, their end of the conversation pretty much boiled down to “You’ll do great, Mom,” and “How can we help?” and “Don’t worry about us.”

  Amy was selfless in the call, focused (not for the last time) on how much she hated her illness causing any disruption in our children’s young lives.

  After we received the diagnosis, we became a cancer family forever. Amy went to work. It was never a battle, as some people describe it. She hated that analogy. This was not a game. It was not a war. Amy was a lover and a fighter, but in a methodical way. Of course, she made a list of all of the things we had to do over the next few days before surgery. Amy’s overall attitude was one of taking care of business. She never displayed any self-pity for her predicament. “Why me?” was never part of her emotional state. Emotions were for later. Now it was all focus, drive, and determination.

  For my part, it’s interesting to look back on what was going on in my head at that time. I was just sad, not for myself (at least not yet) but for the depth of the pain that was being
unavoidably inflicted on our kids. I wished there were a way for me to gather up all their pain and take it on myself. I would have done it in a heartbeat.

  And yet as I moved beyond their pain, I found myself stuck between two different outlooks. On one hand, even though it still wasn’t clear whether Amy’s cancer was ovarian or fallopian, it was painfully clear how serious it was. It devastated, terrified, and overwhelmed me. It made me angry, and it made me feel impotent—my wife was in the worst trouble of her life, and I couldn’t do a damned thing about it.

  On the other hand, as I lay in bed wide awake the night before surgery, I remember being completely sanguine about the outcome. This wasn’t just anyone who was being operated on the next day; this was Amy. Amy Krouse Rosenthal. No way would this woman who’d dedicated her life to goodness be stolen from us. This beautiful soul, the driving force behind an interactive short film project called The Beckoning of Lovely, had too much good to share and too much left to do to leave this earth unfinished. This bighearted, selfless lady, whose legacy color is yellow, the color of happiness, glory, and wisdom; this daughter who respected and admired her parents and in-laws; this revered sibling, this cherished wife, would not possibly be taken and leave such intense sorrow behind. No way. This woman, the perfect parent who adored her children, could not leave me to do it all alone.

  My other half could not be taken. Without her, I’d be half the man I used to be.

  6

  Together We Are One

  And as I sat there, I realized that the questions intersecting life, death, and meaning, questions that all people face at some point, usually arise in a medical context.

  —Paul Kalanithi

  God help the hospital that finds a member of the Krouse/Rosenthal family checking in as a patient.

  Rudyard Kipling once observed, “For the strength of the pack is the Wolf, and the strength of the Wolf is the pack.” And whatever our family was doing—from getting together on Sunday afternoons to swim, play games, talk, and eat to hibernating in Michigan, coloring, reading, and walking in the ravines, to supporting each other through a hospital experience—we gathered as a pack. We’d already ridden out ten births together, a couple of heart procedures, one bout of lung cancer, and several knee surgeries (four on my right knee alone!).

  We probably overwhelmed a few hospital staffs, maybe even provided a little levity, in the way we didn’t just assemble in waiting rooms but took them over.

  On September 26, 2015, we overtook—or, to be more precise, hunkered down en masse in—a waiting room at the University of Chicago Hospital for a day none of our previous experiences had prepared us for: the endurance test that was Amy’s surgery. They don’t call them “waiting rooms” for nothing. We knew we had a long wait ahead of us, we just had no idea how long.

  The day was a bit of a fog. For the most part, my confidence in the surgical team superseded those dark, occasional, inevitable “What if . . .” thoughts, and all of us in that room did an admirable job of buoying one another up with a steady stream of positive thoughts.

  Amy was so strong; surely she could defy the odds. For years, after all, she had been a practicing yogi, dedicated to her ashtanga practice. She swam regularly at various times in her life. Her calves! She had strong legs that propelled her on walks, sometimes as long as two hours, carrying her from one part of the city to the other. Other than the potato chip addiction she inherited from her mother and a heavy hand with mayonnaise, she lived a healthy lifestyle.

  Then, as the hours dragged on, there would be those long silences when we all withdrew into our own thoughts and overwrought nerves, and I’d pull out my notes and study the list of new medical terms that had suddenly invaded our vocabulary:

  Total abdominal hysterectomy

  Bilateral oophorectomy

  Omentectomy

  Lymph node dissection

  Tumor debulking

  Possible appendectomy

  Potential damage to surrounding structures . . . bowel

  Lymphedema

  That’s a lot of ectomys for one operation. The etymology of the suffix ectomy, I’d learned, is from the Greek ektomia, “a cutting out of.” Amy was little, five-one when she stood up very straight, and weighing in just north of one hundred pounds. How much could that tiny body handle? And why did it have to take so damned long?

  Several millennia—i.e., nine hours—later there was a group exhale when Dr. Lengyel appeared, and a few of us were herded into a small consultation room.

  He patiently, articulately explained everything.

  All I heard was “Amy made it through surgery.”

  It still humbles me to look back on that man, that extraordinary doctor who’d had the focus and dedication to devote nine hours to increasing the chances of Amy living with a chronic disease, best-case scenario, rather than dying of cancer. Now, that’s important work. That’s worthwhile. That’s essential. . . . While I was doing what with my life, exactly? Okay, I’d helped some people in my thirtysomething years as a lawyer, but had I come anywhere close to saving a life? No, I couldn’t really say I had. But there are how many Dr. Ernst Lengyels? Not enough. He’s a rare breed, and we were blessed that he was there for Amy when we so desperately needed him.

  I don’t think I really started breathing again until Amy opened her eyes in the recovery room. She was back. I never doubted it (except in those dark, awful “What if . . .” moments), but I couldn’t believe it, either. I won’t even pretend to know what it was like for her to wake up from having her insides removed and rearranged; I just knew that whatever it took for her to recover, and however long, I’d be right there with her. Because Amy was who she was, we both fed off the intensity of her determination to be her strong, healthy, vibrant self again.

  We took our cues from her doctors when it came to her physically healing at the right pace. It started with walking a few steps down the hallway and slowly progressed as the days went by to walking down the hall, touching the door at the end, and making the loop up the hall again until she was back in her bed. Baby steps, but every one of them seemed like a miracle.

  Oh, there was one unexpected bump in the road—as a result of the lengthy surgery, Amy had suffered a femoral nerve injury. Translation: her leg was messed up, and she had limited use of it. While her doctors assured us that it wasn’t an uncommon side effect of such intense surgical procedures and she’d very probably make a full recovery, it felt like just one more thing to be concerned about. We were optimistic at this point that Amy would beat ovarian cancer, but did this nerve injury mean she might end up being a cancer survivor with a permanent limp?

  In the big picture, though, we agreed that we had much bigger fish to fry than worrying about the possibility of a limp. Dr. Lengyel’s team included the brilliant and genteel Dr. John Moroney, who, even with the crazy busy schedule he maintained, took the time to meet our three children when they themselves wanted to talk about Amy’s exact diagnosis. They had an honest conversation about her chances of survival and other questions on their minds. What a gift to have such a caring and talented man on our team.

  Before long it was time for the next recommended course of treatment—chemotherapy. Ideally, chemotherapy in a warm climate. The duration of the protocol advised by the medical team: sixteen weeks. Sixteen weeks would plunge us into the heart of winter. In Chicago. Which no one in their right mind has ever described as a warm climate. If what Amy needed was going through chemo where it was warm, where she could build up her strength by being outdoors taking walks, maybe even swimming, that’s exactly what Amy would get, if we had to move heaven and earth to make it happen.

  Again, we’re lucky people: Amy’s folks, Ann and Paul, were Florida residents. Our oncologist gave us a referral there, and we researched to find her the best facility and health-care provider Florida had to offer.

  The thought of not being right by Amy’s side every minute of those sixteen weeks was almost unfathomable to me. But this wasn’t about
me, it was all about her, and whatever she needed. Ann and Paul were thrilled at the opportunity to care for her, and Amy was enormously relieved and grateful to have her parents’ open, adoring arms waiting for her in the Sunshine State. As for me, I’d just have to make some adjustments, shift some priorities, and make it work. I’d commute to Florida every chance I got, which would turn out to be every weekend, and an occasional week here and there. Yes, my work would suffer. Yes, there would definitely be some financial stress. And yes, in the big picture, with the stakes being Amy’s illness and ultimately her life, those concerns were beside the point.

  We flew to Florida—Amy, me, and our loyal family dog Cougar by Amy’s side.

  Time out for a brief, important, long-overdue introduction:

  The kids were roughly eleven, nine, and seven when Amy’s assistant at the time, Emily, rescued a beautiful black Lab mix puppy from a homeless woman who was selling puppies out of a box at a gas station for $15 apiece. Justin had a dog-walking business at the time and discovered Cougar sitting in Emily’s car outside our house. As it turned out, Emily couldn’t keep him in her apartment, for some roommate- or landlord-related reason. So . . . she asked if we could care for the little guy until she was able to make other arrangements. I’m sure you can hear Justin now: “Mom, Dad, can we pleeeeeeeeeease?!” We agreed to keep the puppy for the night, but Amy and Justin were leaving town the next day. Amy trusted me to make the right decision while they were gone. You know the rest—we fell hopelessly in love with him, we named him Cougar, and from that first night on there were six “Rosies” instead of five.