Drawing of the 6 “Rosies.”
I’d been struggling with insomnia for years, so it came as no surprise that sleep was even harder now. Only instead of the imagined problems I used to worry about, I had something far more substantial and real to focus on in Amy’s illness. I’d kick myself for all the stupid things I used to worry about that were irrelevant, unimportant, and downright trivial compared to what was going on now. And it was impossible to think about what was happening to her without adding in uncertainty about whether what I was doing was what I should be doing with the limited time I had left in this life. I know that many men my age, even those who haven’t been sucker punched with the devastating illness of a loved one, go through the existential struggle about what really matters in life. I’d been battling mine for years, but after this brief separation from Amy, I knew I needed to stop thinking about it and start taking some kind of positive step away from the emptiness of work and toward the things that really mattered in life.
Letting go began with ending my regular attendance at my office in downtown Chicago. It’s a large space I shared with other lawyers who, like me, were solo practitioners or had small partnerships. This is a truly amazing group of professionals and human beings. From the moment the news of Amy’s diagnosis spread through the office, every one of those people had my back. They offered to stand in for me at court appearances, my staff took over the day-to-day requirements of running a law practice, and they regularly checked in to ask how Amy and I were doing and what they could do to help. What wonderful people they are, stepping up like that for someone in need. I hope I’ve sufficiently thanked them for lending a hand during this difficult stretch and keeping me going when I wasn’t one bit sure I had it in me.
Once I’d loosened up on my office hours and Amy had settled in to her new chemo routine in Florida, I became a professional commuter. I’d spend a few days a week in Chicago taking care of unavoidable business and checking in with our kids, family, and friends. Then I’d be off to Florida for the rest of the week. It was demanding and stressful on the body and the mind, but I wouldn’t have had it any other way.
Those Florida visits involved a lot more than just throwing some clothes in a suitcase and hopping on a plane. If it was even possible, my already incalculable love and admiration for Amy were growing stronger with every minute of every day.
I never went to see her without bringing her an illustrated book. Art helped to fill her up, and she was incredibly connected to the illustrators she used for her own books.
Some of the books I brought to Amy in Florida.
Courtesy of Brooke Hummer
I recently came across a note I wrote to her when I’d decided to be by her side regardless of life and work in Chicago:
You asked me recently if there is anything I want to tell you in light of the shitstorm that has hit us. I want to say I love you. Not in the way I say it every day, like “love you,” as in “see you after work and remember while I am gone that I truly love you.” But in the way that I never have loved nor will ever love anyone again in my life. In the way that you complete me fully. In the sense that you gave me support and confidence and intimacy in a way that those three words are the only way to explain it. In a way that allows me to be me and you to be you because of the love I have for you. Meaning, you are my soul and it would be nice if we can beat this battle and love each other for a long time—as our love should be.
I will be with you for this round of treatment, because I love you.
7
Is It All a Bunch of Crap?
I don’t wanna live like this, but I don’t wanna die.
—Ezra Koenig
Settling in with Amy, Ann, Paul, and Cougar in Florida felt exactly right. Work would suffer. So would finances. Too bad. As far as I was concerned, at this point I couldn’t afford to be anywhere else.
Amy’s chemotherapy was progressing on schedule, but we were open to exploring any other options we could add that might help to stave off the relentless cancer cells that were trying to infiltrate her body. And according to the internet, there were a lot of them. Have you ever googled what ginger, curcumin (the active ingredient in turmeric), and mushroom extract do for cancer patients? Try it. The amount of information is exhaustive, and, as we all know, if it’s on the internet, it must be true.
Ginger: “Ginger is 10,000 times stronger than chemo in cancer research model”; “Ginger causes cancer cells to commit suicide” (interesting choice of words there!).
How about curcumin? “It has shown incredible promise in the prevention of cervical cancer, the leading cause of cancer death among women in developing nations”; “Experimental studies have identified curcumin’s ability to prevent metastasis in breast cancer, lung cancer, liver cancer, thyroid cancer, ovarian cancer and prostate cancer.”
Hey, what about ’shrooms? “There is good evidence that mushrooms are among the most powerful functional food in a growing cancer-fighting and cancer-preventing arsenal”; “Known for its immune-building and anti-aging virtues, more recent research highlights the antibody-mediating, multi-mechanistic power that makes the Reishi (mushroom) a super cancer-fighter.”
Eastern, Western, holistic, homeopathic, woo-woo, you name it—we were on board for trying it, as long as it couldn’t hurt. There was a health food store in the neighborhood, and they must have thought they had a couple of ginger, turmeric, and reishi mushroom junkies on their hands. Oh, and a specific type of almond butter, and the ingredients for the “packed with purpose” muffins Amy made in batches and ate for breakfast every morning, as our friend Ava recalls. But zero sugar of any kind, and absolutely no alcohol. (Damn, a few sips of vodka would have been nice at the end of these brutal days.)
And through it all, I kept it very much to myself that my faith in alternative remedies, and traditional ones, and even my faith in general, were becoming intensely strained as I watched Amy physically disappearing right in front of my eyes.
How dare . . . somebody . . . something . . . do this to her? How much harder did she have to try to earn back the health and the life she never took for granted for a single moment? She wasn’t just going through chemotherapy and following every order from her doctors and every lead she was given on how to beat this. She was also working day and night, between chemo sessions, on her latest memoir, Textbook Amy Krouse Rosenthal. All this, and it still wasn’t enough? If there was a God, she must have been sleeping on the job this time.
There were some bright spots along the way in the stress of this new life we were living, but none of them was more memorable than Thanksgiving of 2015. Justin, Miles, and most of our family were gathering in Florida at Ann and Paul’s to spend the holiday together. We wanted all of them with us, of course; there was just a practicality/logistics issue when it came to our daughter, Paris. She was in college in British Columbia, an almost six-hour flight away. Since Canada doesn’t celebrate our Thanksgiving, Paris didn’t have a long holiday break ahead of her, and Amy decided that twelve hours on a plane over a brief Thanksgiving weekend was far too arduous a trip for our daughter to go through.
I “agreed.” Then I snuck off by myself, called Paris, and we made all the arrangements.
Trying to act nonchalant on the appointed day wasn’t easy, let me tell you. But finally I got a text from Paris, letting me know she’d arrived, and she was waiting exactly where we’d agreed she’d be. Then I asked Amy to come with me to look at something in the garage.
Sporting her wig and her favorite knit hat, Amy stepped into the garage. The instant she saw her beautiful little girl standing there, she lost all control of her body and began screaming, “Oh, my God, oh, my God, oh, my God!” over and over again. The pure joy, love, and appreciation in their long, tight embrace is an exquisite emotional snapshot that will stay with me forever.
Like Thanksgiving, holidays and other special occasions became more and more precious as time went on. The most memorable during this time was my trip to Florida on the day of the O
scars in 2016.
I’d grown up watching the Oscars with my mom and sister, and Amy and I never missed them either. Many years running, I would be on the phone with my sister, “watching” together. These were loving phone calls where we often said nothing, just enjoyed the ceremony in mutual silence. It was more a tradition than a cause for a huge celebration. We didn’t throw viewing parties or glue ourselves to the TV to see what the stars were wearing on the red carpet. We’d try to see all the nominated movies and enjoyed our annual tradition of pulling for them, or against them, to win the Academy Award.
Amy and I hadn’t said a word about the Oscars that year, understandably; we had plenty of other, far more important things to talk about. But a couple of days before that particular trip, I noticed that if my flight landed on schedule, I’d arrive at the house just in time for the telecast. So I decided to greet Amy with an invitation to be my date for our own private Academy Awards viewing party, and I boarded that plane wearing a tuxedo. Apparently it’s not as uncommon as I would have thought to see a guy in a tux on a Southwest Airlines flight. No one commented, no one asked about it, no one even did a double take. Oh, well. The only reaction that mattered was Amy’s, and I couldn’t wait to see the surprised smile on her face when I showed up at the door in formal wear to share Hollywood’s biggest night with her.
I think my jaw literally dropped open when my Uber pulled up to the house. I hopped out in my tuxedo, grabbed my bag, and, as the Uber drove away, found myself staring at a completely unexpected variation on the Gift of the Magi story—the walkway to the front door was covered with a red carpet.
Amy and I had shared a special connection since the night we met. Sometimes it was almost uncanny. Amy (and her mom!) were blown away by my having worn my tuxedo. Her reaction was sweet and loving. She was so happy.
Of course, along with the profound gratitude that we were still together to celebrate moments like these, we both contended with the constant unspoken fear that each might be the “last . . .”
On Amy’s birthday, April 29, 2016, I was so overwhelmed with gratitude that I had to let it spill out on paper in a letter to her:
When I was at Anshe Emet as a boy, we had a crew called “The 51ers.” Dave and Jeff were in it. Now, you and I form our own gang. The New 51ers, you and me at 51. And boy am I honored to be in this union with you.
To say that 50 was a brutal year is quite the understatement. Who knew what Rabbi Kudan meant when he said “in sickness and in health”? When we were 26 and getting married, certainly we did not think ahead to what came our way in 2015/16. Maybe we thought about comforting each other when we got the flu or had knee surgery. Not this.
I know people—you included—give me credit for helping you through surgery, chemo and recovery. Honestly, I could not have acted any other way. I just did what I know how to do. You, on the other hand, accepted this challenge in typical Amy fashion, “textbook” even. Who goes through chemotherapy and works 16-hour days? Amy. Look back. You never complained, ever. Today, we officially close this chapter and move on.
Because you are who you are, there is so much to look forward to this year. Is it cliché to say “You deserve it”? Well, whatever you believe, having a book in the #1 position on the New York Times bestseller list is quite an accomplishment. I mean, really, Margaret Wise Brown, Eric Carle, Mo Willems and AKR. Good company indeed. What a way to start your 51st year!
August 9th.* That certainly is also something to make your 51st year pretty darn exciting. It already is making things so exciting for you. I share your utter enthusiasm and anticipation for this process and all that comes with it.
I am so, so happy to be celebrating this day with you. Any occasion to honor you, I accept. I look forward to sharing so much with you, Amy. You make my life so full, so interesting, so loving, so fun and so fulfilling.
I just love you so very much.
Love, Jason
8
One Last Bash
I could be yours so true
I would be, I should be, through and through.
—Nick Drake
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 of
f 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.
My Wife Said You May Want to Marry Me Page 6
