I could be yours so true
I would be, I should be, through and through.
As life would have it, we had more to celebrate in the summer of 2016 than we’d dared to imagine—we got the news after the conclusion of her chemo treatment that Amy was in remission.
Our relief and excitement levels were off the charts. It’s funny, even with the intensity of everything we’d been through, and the severity of Amy’s disease, we briefly shifted from stressed-out overload into elated optimism.
Amy fell in love that summer with a Justin Timberlake song called “Can’t Stop the Feeling.” Her taste was normally a bit more solemn: Nick Drake, Elliott Smith, and Badly Drawn Boy come to mind. We decided to throw a celebratory dance party with that song as its theme. It was a euphoric multigenerational gathering, our kids, our friends, and their kids, eating and drinking and dancing the night away in our backyard. Amy was spectacular—who else just north of fifty could pull off a lime-green Soul Train–worthy one-piece? We toasted her, our friends and family, and life in general.
Then we went in for Amy’s follow-up appointment and scan.
Courtesy of Brooke Hummer
The scan showed that the malignancy was back, in her liver and her lymph nodes.
Our world came crashing down again.
Amy’s medical team strongly recommended immunotherapy, which apparently borders on being the new normal in the treatment of many cancers. She started the protocol right away. The doctors were encouraging, and we let some cautious optimism creep in again.
Paris was with Amy in Chicago, and Justin returned to California, where he’d just moved. Miles was about to start his senior year of college, and the plan was that I would drive him and his belongings to Atlanta, about an eleven-hour journey. On August 17, 2016, a few days before we were scheduled to leave, Amy was admitted to the hospital. She was experiencing shortness of breath, and her blood pressure was an alarming, life-threateningly low 86 over 68.
They were able to stabilize her fairly quickly, but Miles and I were already talking about alternative plans to get him to Atlanta. Amy wasn’t having it. I was taking him back to school, period, drive carefully, buh-bye. She desperately wanted as much normalcy for the kids as possible through this awful chapter of their and our lives. It would give her a sense of peace knowing they were doing “what they were supposed to be doing,” and in Miles’s case, that meant starting his senior year on time, keeping up with his coursework, and graduating right on schedule.
So Miles and I set out on our road trip.
Our white Ford was packed to the gills with Miles’s belongings as we set off for our marathon journey. It seemed like yesterday that he, Amy, and I had taken this exact same pilgrimage to see our middle child off to the beginning of his college career. Where did the time go? What had I worried about back then that I thought was a big deal? Had I appreciated every precious, simple moment, when we were all so happy and healthy, as much as I should have? Probably not, without something like our current circumstance to compare it to. And now, if Amy weren’t surrounded by family and more than competent health-care providers in the hospital, could I have even brought myself to pull out of our alley, let alone travel eleven hours away? Probably. But only because she was right, it wouldn’t do either of us any good to have such an important time in our kids’ lives turned upside down by something they couldn’t do a thing about.
Miles and I were approaching Nashville, roughly the seven-hour mark, when we got the call from someone in the family. I don’t remember who. I just remember what they said: Amy wasn’t breathing well. She might not be able to breathe on her own. Her doctors were thinking of intubating her, and they might have to put her in a medically induced coma that she might or might not come out of.
Message received. Loud and clear.
Thankfully, I was vaguely familiar with the area and the stretch of interstate we were on, and I knew we were close to the Nashville airport exit. We were there in minutes, veered off at the exit, and floored it into the airport entrance.
For the first time in my life, I chose the valet parking lane at the airport and screeched to a stop in front of the attendant. Miles and I jumped out of the car—it was packed from floor to ceiling with Miles’s belongings—and I handed over the keys.
I explained the situation as quickly as humanly possible. “My wife, this young man’s mother, is in the hospital in Chicago. We need to get on the next plane immediately. We have no idea when we’ll be back.”
Miraculously, I could tell by his nod and the look on his face that he understood. I owe that man a lot more than the thank-you and the tip I gave him.
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.
I set up my home office at the dining room table. Computer, files spread everywhere, it didn’t matter, as long as I had a view of Amy. She and her laptop took up residence on the family room sofa, where she spent hours at a time wrapping up some final projects and working on something new that she was determined to finish, which would become her last published work.
I would be remiss not to mention that the stress of home hospice care was assuaged by the incomprehensible, undeniable commitment of each one of our children. The emotional and physical support I felt from them—and feel to this day—got me through the roughest of moments of home hospice. Paris took time off from school and was by her mom’s side for the duration of our hospice experience. She was tender with her mommy every moment they were together.
Paris had become this incredible blend of stunningly beautiful and confidently strong. She’d somehow acquired a pair of magical blue eyes that pierce one’s soul. Amy saw right into the center of those baby blues like no other person in our daughter’s life. They shared inside jokes, phrases only the two of them understood, and unique skills like board games and list-making; they dreamed about each other and, when in each other’s company, could often be found in an embrace.
From a very early age, Paris was tenacious. I remember instructing her when she was all of four years old, starting youth soccer: “Now, you know how you have lots of really good friends? Well, this ball right here is not your friend, so go get it!” or something to that effect. From that age forward, Paris was an above-average athlete. More important, it was the manner and method to her approach to sports that set her apart. As with other facets of her life, she was intensely hardworking and organized in her athletics. She stayed thirsty for methods of practicing and exercising that would make her better. As a high schooler, she loved to play basketball. We spent many days together alone in a Chicago Park District gym shooting and dribbling. She was hard on herself, but persistent. If she was going to play hoops, she was going to be the best version of herself at that sport. This characteristic of hers later applied to almost anything she set out to do. A culmination of her intense work ethic happened in her senior year of high school.
It was in her final year that the women’s basketball team had to disband due to lack of interest by enough female athletes. So what did Paris do? She lobbied the administration and challenged the league rules to allow her to play the season on the boys’ team. Correct. She became the first female player in the history of her school to play a basketball season on the boys’ basketball team. At the end-of-the-year banquet, the parents gave her a standing ovation in recognition of her integrity, her hard work, and her sportsmanship throughout the season. This was typical of how she continues to conduct her life as a young adult today. Having Paris by my side during home hospice, as a tender supporter of her sick mother, as well as my health-care partner, helped me get through these very dark times.
And, as if to mimic the Marvel superheroes they have loved their entire lives, Justin and Miles would commute from out of state every weekend. Somehow, Miles, who was in his senior year of college, managed to graduate on time.
And then there was Justin. Take a cue from my eldest, Justin. He just knew how to communicate. From the moment he knew his mom was in hospice, he made a choice. He was not physically with us every day in hospice, but he connected with Amy every single day. That’s right. He picked up the phone and called his sick mom each day to connect with her. When Amy talked with him, even if it was a brief moment, Amy lit up brighter than the most beautiful candle we had burning at the time. Such empathy from a young man—yes, a millennial—can teach us a thing or two about devotion, love, and connection.
If I had to make the same hospice decision all over again, there’s no doubt about it, I’d still choose home. But parts of it bordered on unbearable. It was nothing compared to what Amy was going through, just as tough and emotionally challenging as life can get.
Basic daily activities. Who gives them a single thought? Pulling open the refrigerator door? Big deal. Going to bed? Walk into your bedroom, turn out the lights, and call it a day. Going to the bathroom? So what? Now, in our “new normal,” those things all became hills to climb. Asking Amy to open anything, from the refrigerator door to a bottle of medicine, was like asking her to bench-press three hundred pounds. Walking upstairs to our bedroom was as exhausting for her as running a marathon. And during all those years we raised children together, not once in my wildest imagination did it occur to me that someday I’d need to use my diaper-changing skills on my wife. Did it ever enter my mind to complain or feel put-upon about any of it? Not even once. As much as it was to deal with, I just kept wishing I could do more.
Her inability to eat, which went on longer than anyone thought she’d be medically able to sustain, meant watching her shrink, right before my eyes. You know how your memory often consists of thousands of mental snapshots of different phases of your life? Well, during our home hospice experience, I only saw Amy as Amy, the love of my life, the woman I’d promised to take care of, in sickness and in health. As I look back, though, I can see how her steady weight loss and the disease that was eating her alive morphed her into “that look.” You know it when you see it, that sunken, almost skeletal shadow you keep wishing you were just imagining; and somehow it only deepens your love from one day to the next.
If my memory serves me correctly, our doctors were vague about the subject of physical intimacy. I won’t be. The possibility of being intimate in any physical way disappeared early on after Amy’s diagnosis of a terminal illness. At the same time, I can honestly say that as Amy progressed through her disease, our intimacy actually became more profound than it had ever been at any point in our relationship. I still remember a moment during one of Amy’s early hospital visits. I was in her hospital bed with her, holding her, with her tears falling on me, and she looked up at me and quietly said, “I just want to be normal again.” That may sound like a simple, obvious plea. But coming from a superstrong woman like Amy, who never, ever complained or asked for anything, it was like a pure, honest, intense vision into her soul, and a whole new level of intimacy between us.
There was only one aspect of her home hospice care that, I admit it, I just couldn’t deal with. Amy’s bowel obstruction had caused a fistula—in the most basic layman’s terms, an opening in the body where there shouldn’t be one. Occasionally waste would make its way through that opening. It was extremely messy, very smelly, and almost unbearable to clean up after. Amy’s mom and I did our best, but the wound care was way beyond my sensory limits and health-care skills.
In case you’ve ever wondered, there really are angels in this world. Ours was named Margaret. She was a wound-care nurse who’d worked for our dear friends Wendy and Jimmy. She took care of the wound, and the mess, and the smell without batting an eye. She couldn’t have been more diligent, more professional, and more tender when it came to keeping Amy clean, which wasn’t easy.
After Amy died, Margaret shared a story with me:
You may not remember this, but I’d just finished helping Amy in the shower. When she was all clean, we got out. I was in my clothes, of course, and I was as wet as she was. Amy had a big fluffy towel, and you offered me one, but I didn’t really need it. Then, as we were walking back to your bedroom, she stopped at the closet and offered me one of her sweaters. Of course, Amy was a very small lady—tiny, in fact. And I’m not. I would have had to knit at least three of her sweaters together to fit me. But there she was, so sick, in so much pain, facing death, and she was worried about me getting cold. I’ve known a lot of good, kind people in my life, but I’ve never known one as kind as Amy.
This sentiment was one I would soon hear from countless people who reflected on Amy and the impact she made everywhere she went.
Of course, not everyone responds like the Margarets of the world. In fact, the variety of ways people react to a personal crisis like ours makes for a remarkable study of human nature. There’s no doubt about it, it’s a time when no one really knows what to do. Some instinctively get it. Others, out of either awkwardness or a complete lack of empathy, don’t get it at all.
Family, of course, is everything; and this was their impending loss too. They were remarkable every step of the way. From my four-year-old nieces to my father-in-law, Amy and I could not have felt more support. To a person, they all knew what to say, how to behave, when to gather around us, and when to give us space.
You know how in life you have those few true friends, that handful of special people you can tell anything to, they can do the same with you, and no matter what, you’ll always be there for each other? If you’re lucky, you have one or two. Amy and I were really lucky—we had several.
Then there are those good friends you see and/or talk to regularly. You enjoy each other’s company. You have long, chatty phone conversations, you make social plans, and you reminisce about the shared experiences that brought you together in the first place.
There are also those friends you’ll always feel fond of and connected to, even if, for no other reason than the busyness of life, years go by when you’re out of touch.
And with very rare exceptions they all, in every category, found a way to step up, just be there, and teach me valuable, lifelong lessons about the inherent goodness of the human race.
One of those exceptions happened on one of the rare occasions when I went to my downtown office to check in. As I was crossing the street, I saw an acquaintance coming straight at me. I’d known him for years. His wife had known Amy since childhood. Our kids went to grade school and summer camp together. It was immediately clear from the look on his face that he desperately wanted to say something to me, but as we got close enough to engage in a bro hug or a handshake, the most amazing thing happened: nothing. Not a word. Not a gesture. Instead, we stopped for a brief moment, he gave me a blank stare, and we were both on our way again in a flash. A word of advice if you have a friend whose loved one is dying: SAY SOMETHING. ANYTHING. It doesn’t have to be that hard. “Man, I am so sorry” is good. “I am thinking about you” works. But total silence and darting away as fast as you can is what I’ll politely call poor form, and your friend (in this case, me) won’t forget it.
I’d also strongly dissuade you from saying things like “Give me a call” or “Let’s get together,” especially without following up. That puts the responsibility for the first move on the person who’s already grieving and on total overload, and no matter how well-intentioned, it ends up feeling like one more burden. It’s a much better idea to call with an already-set plan. “Dinner. My place. 7:00 p.m. Saturday.” Maybe an added, “I’ll pick you up.” Even if the response is “No, thanks,” you can count on it that the gesture mattered and was appreciated.
What is a legitimate offer to help a person who’s grieving? Certainly that is difficult to say, and depends upon your relationship to the person who has experienced a loss. For example, many people wanted to reach out to me and meant well in doing so. However, “Hey, man, let’s get a beer some time” is not, in my mind, a real offer. It puts the onus on the person who is going through way too much to be the one to make plans. My mind was clogged with impossible thoughts of sadness, loss, loneliness, and a variety of other emotions. I was in no place to make social plans. Something along the lines of “Jason, I know you are going through so much, let’s meet for a beer at Union Pizzeria on Chicago Ave Thursday at 6:00 after work. I’ll be at the bar with a beer. If you are up for it, great, you can count on my being there” sounds solid. Clear. A specific time and place. Listen, the worst thing that can happen is that I don’t show up. Try again. Maybe “Hey, bro, I will be at your place with a six-pack of Gumballhead Monday night. If you don’t feel like hanging out, I totally understand—still, take the brews. I hope you will feel up for a quick visit.” Again, the worst-case scenario is that I don’t even answer the door! No biggie. Leave the beverages. And keep trying.
Oh, and also, that tilt of the head with a furrowed brow, or a slight frown with a little headshake—uh-uh. Please don’t do that. I know you’re sad. I know you feel badly for me and Amy and our family. But pity is the last thing we need.
One close friend of mine texted Grateful Dead lyrics to me every week, all of them on the theme of the eternal nature of deep love. “You know my love will not fade away” was a regular. Such a simple, powerful way to connect with a friend who just needs the feel of a familiar hand on their shoulder.
A high school friend wrote me a note in which he confessed that he had no idea what to say, and yet said it beautifully: “Know that I don’t write this kind of letter often. But I have learned not to doubt myself (or buy schmaltzy Hallmark sympathy cards). I think people worry about what to say to someone when they have lost someone dear in their life. . . . Amy seems like she would have said just write what you want to and be real. That’s what I hope I’ve done here.” Amen, brother, you definitely did. I could go on, but I think you get it.
One of our friends, Brian, showed up every Saturday morning while Amy was in hospice, always just to drop off three yellow items. Amy’s connection to the color yellow was especially illustrated in The Beckoning of Lovely, a project of community and connectedness you can find on YouTube, where Amy entered Millennium Park carrying a yellow umbrella, which became her legacy symbol. Brian’s weekly yellow gifts ranged from blow-up plastic duckies to balloons to mustard to anything else he could find on a thoughtful search through the dollar store. He never expected any kind of reciprocation. He never asked to see Amy, or expected to, but I was always the beneficiary of a bear hug if I was available when he stopped by.
One of my sweet nieces sent me simple postcards every once in a while, just to stay connected through our mutual heartbreak and let me know she was thinking about me.
And here’s a really easy, affordable way to offer comfort and support to a friend who’s in the process of losing a loved one, and maybe even give them a little smile. I recently attended a conference where a woman named Emily McDowell spoke about her company, which, among other things, really fills a void in the greeting card industry. They create cards for those moments when you don’t have the first clue what to say but don’t want to thoroughly nauseate yourself and the person receiving it. “There is no good card for this. I am so sorry” and “Please let me be the first to punch the next person who tells you everything happens for a reason” are two of my favorites.
Now that’s more like it.
Whatever tough moments and reactions we encountered along the way, there was no doubt that in-home hospice was the right decision for us, particularly because of how we were able to create a warm and comfortable space for Amy. No one has ever used the simile “as beautiful as a hospital room,” which is why we chose to make the home hospice experience as beautiful as it could possibly be. If you ever find yourself in the same position, take it from me, it makes a difference. Knowing the story is ending soon makes every word on those final pages that much more important, after all.
We organized people into groups of visitors, to keep Amy from being overwhelmed at any given time. We had a “Krouse Night” with her parents and three siblings. They sang their family song, and weak as she was, Amy joined in. On a separate night, loving, loyal, lifelong friends of Amy’s came and regaled us with stories about her and us, from her high school years to her nervous anticipation about my calling her after our first date.
Amy and I had always shared an almost rabid love of music, and we had a variety of musicians come to our house and play for her. World-renowned blues guitarist and friend Dave Specter performed a stunning rendition of George Harrison’s “While My Guitar Gently Weeps.” Classical musicians serenaded her with stringed-instrument arrangements. A pianist with an angelic voice came every week, having learned the words and music of favorite songs I’d requested. Every one of these performances was weighted with meaning—not just for us but unexpectedly for the performers as well. Every one of those generous, gifted people told me later that performing for us was one of the most meaningful gigs they’d ever played.
For some reason, I became insistent that our home and lives be infused with candles. Their glow is ethereal, obviously, filling a room with an alive, flickering light that’s always changing. Candles of various sizes also seemed to me to represent the uniqueness of the human form. The different shapes, sizes, fragrances, wicks burning with their own unique intensities, the inevitability of their burning out, all became icons of humanity and its frailty. Yes, I was witnessing this frailty every minute of every day, right before my eyes, but the candles gave it a certain grace and elegance that spoke to me. Being at home for long stretches of time, I started making candles of my own. Soon our family room and living room became a Rosenthal chandlery. Any container would do—an old soup can stripped of its label, a mason jar, an old jelly jar, existing candleholders that had burned all the way down—you name it, it was a candidate for the next homemade candle. It became a creative outlet in an otherwise dark time, something I could do when it felt as if there were so many things I couldn’t, no matter how desperately I wanted to.
Then along came Valentine’s Day. To celebrate us, and all that “us” meant, on this Hallmark-manufactured day, I peppered the house with love notes. I took blank sheets of music paper, filled pages of it with the lyrics to some well-known as well as favorite love songs, and posted them all over the house. I know her perception of what was going on around her was getting dim, but I’m still certain Amy saw them all and felt them in that infinite part of her that understood everything.