Once inside the terminal, we ran to the Southwest counter. I knew they had several flights to Chicago per day, and that it was a relatively quick trip. I breathlessly explained the situation to the woman behind the counter, and she immediately got us on a flight that was leaving in thirty minutes. People are good, damn it! With this unbelievable angel’s help, we were escorted to the front of the security line, ran to the gate, and made it on board with moments to spare.
Miles and I were pretty quiet on the flight, withdrawn into our anxiety with no real reassurance to offer each other. Thankfully, we weren’t in the air for long, maybe an hour and a half at most. We sprinted off the plane in Chicago, jumped in a rideshare, and flew up Fifty-Fifth Street East to the University of Chicago Hospital. Astonishingly, we were in Amy’s room within two hours of getting that initial phone call.
We were both weak with relief when we dashed into that room and found that Amy was stable. Phew! In fact, as luck would have it, she was not in a medically induced coma and not intubated. She was, however, wearing a breathing mask, something between Darth Vader and your father’s sleep apnea machine, that covered her nose and mouth. The rest of the room was the sterile, ugly, impersonal “usual”—IV machine next to the bed, with a tube connected to a line in her arm; no clock; the whiteboard with the on-shift nurse’s name; the sofa/visitor’s bed; machines beeping at various intervals.
The breathing mask was scary, but nothing compared to the images I’d been trying to brace myself for. Amy’s eyes opened to see Miles and me standing beside her, and I saw them widen through the clear plastic of the mask. I knew those eyes. That wasn’t “Thank God you’re here” I was seeing, it was anger. She was pissed! What were we doing there, when we should have been in Atlanta, unpacking the car and getting Miles settled in for school? She thought she’d made herself clear—this nightmare was bad enough without her children’s lives being thrown completely off track because of it!
It was impossible not to smile a little. Typical AKR. After all she’d been through, Amy was still in there, full force. And before long she calmed down and told us how much it meant to her to wake up and find us with her.
As it turned out, what had almost cost Amy her life was severe sepsis/septic shock on top of her pulmonary issues. It was a rare reaction to immunotherapy, suffered by only about 3 percent of patients.
Immunotherapy was no longer an option. We were running out of alternatives.
Either in spite of all that or because of it, Amy had her heart set on traveling to Florida at the end of December to ring in 2017 with our family, so that’s exactly what we did.
It still kind of amazes me how cute and alive Amy looks in this picture. Sure, a little thin, but so Amy. It’s hard to wrap my head around the fact that this was her last time with the family in Florida, our last New Year’s Eve together, and the final days when she was allowed to eat.
She wasn’t about to let anything stop her from conducting another of her interactive experiments on that trip. She called it “Message in a Bottle,” and it was a promise she made in her memoir, Textbook Amy Krouse Rosenthal: if her readers would send her good wishes, for themselves or someone else, she would place them in bottles and toss them out to sea.
Her readers responded with more than eight hundred messages in a few short months, and she filled six bottles with them. Then, as a family, to help Amy fulfill a promise she would never have broken, we gathered on the beach and threw the bottles into the ocean. It was such an essential part of her fabric to honor a commitment. If she set out to do something, it got done. And if you told Amy you were going to do something, she held you to it.
I clearly remember sitting on the beach with Amy once all the messages had been “delivered.” She was exhausted, from walking along the shore in the sand, I’m sure, but even the simple act of tossing a bottle into the ocean would have depleted her. As we sat there silently together, I got it, and felt it with everything in me, that our time was limited. But I couldn’t let myself give in to the grief of knowing that. My only purpose at that moment was to make my love, my wife, the mother of my children, the most extraordinary person I’d ever known, feel comfortable and comforted.
Ann, my mother-in-law, told me later that she could see the pain in my face in this picture. Looking at it now, I just feel a deep sense of love and profound connectedness.
We went through all the motions of a traditional New Year’s Eve celebration, with champagne and even the countdown to midnight and the official start of 2017.
And then it was back to Chicago for Amy’s next appointment with her oncologist.
It was a tense flight back to Chicago, anticipating that looming doctor’s appointment. What was next for us? Were there any options left? Our oncologist had developed a close connection with Amy, and we knew that if there was anything left to be done, he would do everything in his power to make it happen.
The look on his face when he walked into the room said it all—the news wasn’t good. Amy’s CA125 levels, or tumor markers, were off the charts. She had a complete bowel obstruction that would prevent her from being able to eat solid foods.
It pained him to say it, but there was only one question left: Did we want to do hospice in the hospital, or at home?
Hospice. The last phase of a terminal illness. The focus is comfort and quality of life. The word cure is off the table.
Between inpatient and outpatient visits, we couldn’t begin to count how many trips to the hospital we’d taken in the past twenty-four months. Inpatient stays were soul-crushing. In addition to the endless beeping and other alien sound effects, there was always a steady stream of well-meaning nurses bursting into the room, treating Amy like a child, calling her “Miss Amy” in a singsong way that went right up her spine.
It wasn’t even a close call. If hospice was where we’d found ourselves, we’d do hospice at home. Our home. Full of love. Full of memories. With our family. With Cougar. With friends. Where Amy would die.
The message we got that day was not a complete shock. Our optimism, over the past couple of years at this point, was solid. Setbacks, as my good friend Mike Kates, a motivational personal trainer, was fond of saying, were setups for a comeback. We lived by that message in our own way. At the same time, we knew that Amy’s diagnosis was likely terminal.
We got good at communicating on a much deeper level. Communicating in this way over the course of Amy’s illness helped us deal with the certainty we were now facing: the end. We continued this intimacy after we were faced with this hospice decision. Our friend John Green reminded me of a Robert Frost quote, “The only way out is through,” and Amy and I both had very specific jobs to finish. For Amy, she used the focus of her work to diminish the physical symptoms as well as the extreme emotional roller coaster that being faced with the end of life brought her. My job was clear. I had only one mission—to make Amy comfortable, to be her caretaker, to make her feel loved, and to make the last moments she had on this planet as tolerable as possible.
Amy and I had deep and emotional conversations about the end of life, parenting our children, and carrying on this life without her. We cried together. We did our best to make sure each of us was going to be okay. My mind was as active as the trading floor at the Chicago Mercantile Exchange before computers took over. The synapses in my brain signaled between considerations like hospice supplies and wound care and more existential issues such as what my life would be like as a fifty-two-year-old widower.