It was appointment day, and my husband Daniel and I rode in thought­ful silence as we neared the hospital. Neither one of us felt like talk­ing, nor did we make banal chit-chat, a small com­fort from knowing one another so well. He drove more ag­gres­sive­ly than usual, dodg­ing in out of traffic like Mario Andretti in his final lap. I grasped the door handle, but I said noth­ing, which for me was not usual.

My thoughts ran to his ap­point­ment, and maybe his did too. “Did the hemo­globin levels hold, or will we get the ‘we knew this day was coming’ talk?” For that and other reasons, I kept quiet and steeled myself to the familiar ele­phant in the room: Will today be ‘show time’, or do we get another two month re­prieve?

As we drove into the garage, Daniel pressed the button, and the yellow park­ing token dis­pensed from the bottom of the machine. He gave it to me, as he’s done many times before, and I put it in my pocket for safe­keeping. After we parked, he walked around to my side of the car, took my hand, and we spoke our first words. “Have you got the token?” he asked. “Yep. Call me your token wife.” I smiled.

Walking across the street bridge and up to the sixth floor of the hospital, I donned a practiced, peaceful countenance. As we waited for his name to be called, I fantasized about a metaphysical version of the old “Let’s Make A Deal” game show, where I would do any crazy shenanigan for a cure. “Maybe if I can find a hair pin, a battery, and a half-eaten granola bar in my purse, we will get good news.” Then I pushed that thought from my head.  A technician calling his name broke the silence. It was time.

Maybe my cosmic bartering paid off, or the great game show host in the sky intervened; regardless, we learned that it wasn’t show time just yet. On the good side, Daniel’s free falling hemoglobin levels had stabilized this visit. Less favorably, his free light chain levels continued to rise, signaling the probability of disease progression and kidney involvement. We discussed watching his numbers closely as he enters his third year since his smoldering myeloma diagnosis.

After the appointment, we walked out calmly, like nothing had happened. It was another ‘routine’ appointment day filled with a million emotions and a crucial two-month reprieve. He wasn’t called up today. It was not his time. Again we left the game without getting zonked, and that’s more than anyone can ask for when you’re playing the myeloma version of “Let’s Make a Deal.”

Since then, I’ve been thinking about my droll remark about being the ‘token wife.’ I didn’t intend for it to be anything more than a mood-lightening pun, but I think I may need to redefine the term.

I’m the bearer of the token, yes, but as a caregiver, I have a myriad of critical, supporting roles to play with every appointment. I’m the payer of the co-pay, the carrier of the lab results, and the patient’s best advocate. I am the trusted hand to hold, the urine jug concierge, and the honest responder to the question of “On a scale of 1 to 10, how bad are your fatigue symptoms”? I am the cosmic bargainer, praying for a cure. I am the watchful worrier, and most days a consummate actor, portraying strength and praying for more when my tank is low. I am a supporting character; hoping to bear some of the weight of our myeloma story.

If that’s what it means to be a token wife, then I am she.

Stephen King in his book, On Writing, a Memoir of the Craft, credits Tabitha Spruce King, his ‘token wife’ of more than 40 years, with helping him find his way after a serious car accident in 1999.  He had been walking along the road when he was hit by a car in a head-on collision that catapulted him 40 feet into the air, resulting in a collapsed lung, broken back in multiple places, and shattered hip, leg, and knee bones that were pulverized into jigsaw puzzles. 

He credits his wife for caring for him throughout the year of surgeries, braces with pins going through his bones, and an excruciating rehabilitation that brought him back from the brink of death. The doctors mended his bones with great skill, but his wife tended to all the other things that made his life bearable during the long journey back to normalcy. Without her care, he explains, he might have never found the distraction he needed from his painful recovery and resumed writing. He said, “Writing is not life, but I think that sometimes it can be a way back to life.” His wife helped him, he said, understand that it’s about “getting up, getting well, and getting over.”

As a caregiver, I believe that I have to find a way back to normalcy for us. It’s not about acceptance, because we accept that Daniel may require myeloma treatment soon. We even count ourselves lucky by any measure, regardless of the myeloma.

But, as anyone with smoldering myeloma knows, the not-doing-anything-about-it makes it hard to find “a way back to life” post diagnosis. It’s hard to focus on “getting up, getting well, and getting over” when he hasn’t been called out of the audience yet. They’ve turned on the lights, and we’re definitely locked in the sound stage, but we’re not ready for the show.

To be honest, though, I’m not sure that it’s a much better view from the stage anyway. For now, we will go back to our seats and I’ll be practicing my part as the good token wife.