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?