Myeloma, Party Of Two: The Token Wife
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.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thank you, Tabitha, What a wonderful article. I, too, am a caregiver, although my husband is on stage and never smoldered. I honestly think myeloma (and perhaps many cancers) are all about waiting for the next data point to see which way the graph is moving. I have been gratefully reading your columns carefully since last July's diagnosis. The token wife. Wonderfully appropriate. Thanks for putting a smile on my face. I can relate so well to the drive to the hospital. It is soothing to me to know someone else understands. Cindy
Thank you, Tabitha, for yet another well-written, heartfelt and descriptive picture in words of life with MM. As Dan's parents, his father and I are so grateful that he is fortunate enough to have you by his side throughout this journey. I know exactly what you mean about it being a struggle to find the right mindset during the "watchful waiting" phase. It's the quiet before the storm ... waiting for something that you hope never happens.
Thank you Cindy K for your kind comment. I'm so glad that the article resonated with you, and that I could put a smile on your face. Hang in there! We caregivers have to stick together!
Sandra, you're the best support system that a caregiver could ask for, and namely, because you're one too! Thank YOU for all the support you've given Dan and me as well. We love you.
As one who has gone thru the smouldering, and now 2 courses of therapy with a novel drug regimen, my wife and self have developed the ability to live for today. We cannot do anything about tomorrow, so we try not to fret it. In fact, living day to day is actually very liberating, since things don't really change dramatically from one day to the next. Any day we wake up on the green side of the grass is a blessing.
For me, I am now approaching 5 years post smouldering, going day to day. Life is good, and generally we don't think about the myeloma until it's time to take my pills before bed time. I may have quoted to you before from Matt 6:34. These wise words have saved us endless worry and they can minimize your worries too. Just think over 2000 years ago a wise man said don't worry about tomorrow, as each day is enough to deal with.
It takes a mindset change to understand and apply, but it is worth it. My wife also is a great caregiver, and she handles the tokens also on our journeys to the hospital for blood tests. Long term support from a loving spouse is critical because myeloma is treated as a chronic disease, like heart disease. Their is no quick solution yet, so live day to day, provide the best support you can, thus giving you and Daniel the best life possible.
Hi Tabitha,
I've been following your Beacon columns for a couple years now. This is one that really strikes a chord as a fellow 'token wife'. I've been advocate/caregiver with/for my wife since 2012, being at every appointment and we go through something very similar as we wait for test and scan results. And, yes, we caregivers do carry our share of the weight when we take on 'the myriad of critical, supporting roles'.
Your husband is a fortunate person to have you by his side. I've never regretted the time I've spent being my wife's primary support through this difficult journey. She never would have had some of the choices she's decided between if I hadn't been there. It is an important and daunting role. Please take care of yourself too.
Thanks for sharing your journey with us.
Joanie
Thank you for your perspective, I am the patient. My daughter is my "ride or die". She has been by my side every step. Hospitalized for chest pain, thought to be pneumonia; nope, a fractured rib that 8 days later turned into MM in the last stage. My first treatment was Xmas eve 2014, treatment 2 days per week, oncology eval 1 day a week. My progress is good, and my treatment are only 1 day a week
If it seems like you think you are taken for granted, "Let it go!!" Dress up, put on your nicest outfit, cute shoes and bracelets, keep your hair done. Do you! Look like a trophy wife girl!
I know most days I can be a Debby Downer, but, remember, MM is not contagious, but our woe-is-me attitude can be. I tell my daughter how happy she makes me. The idea that I had something to do with the creation of such an awesome woman with the heart of an angel makes me tear up. Trust me, most days I don't even realize it is appointment day. Try to make those quality days. Go out to eat in the best restaurant – prices are discounted during the day, not a lot of business, service is special if you tell the manager. Go buy cheap clothes, just a shirt or jacket.
We give up on ourselves when we get the news, our world grinds to a halt, everything in our life revolves around medication schedules, next appointment. Go to IHOP, TJMaxx. If he doesn't do some to smile about, you will. I'm praying for you and all the care giving gladiators!!
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