Myeloma, Party Of Two: Evolution
It was a usual Sunday. We were in the early service, and I can tell you that I needed more than a bit of caffeine, when all of a sudden the minister asked, “Are you the same person that you were five years ago?”
“Wow,” I thought, “I’m not sure,” as I became lost in the recesses of my mind.
You might think that the answer to question is a simple one. You’ve had the same blood type since birth, for example. You have the same eye color. If you were good at math in school, you’re probably still good at it, and the things you deeply felt as a child you probably still feel.
I, personally, have always been a fan of constancy. Anyone who knows me knows that I am not a fan of change. I eat in the same restaurants, I wear my makeup the same way that I have for years. I still loathe the tomatoes that my four-year old self fed to the dog under the table, and I still get a little excited when I hear the Star Wars soundtrack. So, like me, maybe, you’re tempted to say that you’re basically the same person that you’ve always been.
But, what about those watershed moments in life? People often cite graduating from college or becoming a parent as moments when their lives were transformed. But we can do better, can’t we? How about that multiple myeloma diagnosis? Yep, that changed things, alright!
When I look at my husband Daniel, I see the same man that I met 15 years ago. His green eyes still sparkle when he gets tickled, and he still has the same dry sense of humor that drew me to him when we met as “young-uns.” He’s as fascinating to me – for all his quirks and his oddities (and perhaps because of them) – as he was when we met. He is the familiar best friend and touchstone of my life.
But I cannot deny it; much is changing within him – physically, and in other ways.
I can’t honestly say that Daniel is the same person as when we met. There have been measurable, physical changes in him.
In late 2011, he was diagnosed with MGUS, which was quickly amended to smoldering myeloma in early 2012. At that time, Daniel had a serum free light chain ratio of 3.9, a Bence Jones protein of 6 mg, and an M-spike of 1.4 g/dL. Then, after participating in a clinical trial for PVX410, a potential therapeutic vaccine, his smoldering myeloma remained stable and largely unchanged for a long period of time.
We didn’t get too comfortable, though. Things started trending up again in 2015, and over the last six months, his kappa serum free light chain level has fluctuated between 290 and 773 mg/l. His Bence Jones protein is at 43 mg, and his M-spike is at 2.7 g/dL.
And that’s just the physical changes. We know that treatment could begin anytime and we would enter a “new normal,” when the clock would begin ticking much louder.
We also know multiple myeloma touches us much more deeply than in physical ways, don’t we?
I’ve been here awhile now, and change usually seems like such a dirty word in the myeloma world. How desperately I’ve wished for us to return to 2002, the year when we met. I was a tiny-waisted, idealistic English teacher, and our new romance was neither threatened by the voluptuous, big-haired thing in the singles’ group nor this great leviathan we know as cancer. All the future was possibility, and our union was the stuff of legend (and Jane Austen novels).
But, enough of that. Author, psychiatrist, and holocaust survivor, Viktor Frankl said, “When we are no longer able to change a situation – we are challenged to change ourselves.”
I’d say that we’ve been challenged, alright. The better question is, “How are we doing?”
I won’t speak to Daniel’s inner thoughts, but I can tell you that I personally have seen a metamorphosis over these last five years. As we began this journey together, my first steps were in fear, even denial, wishing that somehow it was all a mistake. Since then, I have changed. I’ve accepted certain truths, and sought a caregiver’s “evolution towards wisdom.”
Daily, I pray for the tools I need: the strength to be silent, focused, and resilient; the restraint to support and not smother; and the peace to accept that life’s watershed moments – the good and the bad – are all beyond my control. I pray for a cure for multiple myeloma, and that Daniel will “smolder” without treatment until it can be found. But I know that all I can do is strive to live authentically, choose joy, and share love every day that we’ve been given together.
I’m not there yet. By no means do I float through my days in a Zen-like state of euphoria. I still grumble about messes that disrupt my “Sheldon Cooper-esque” dreams of ordered space, and I definitely need to find my happy place when I’m honking a virtual symphony in traffic. But despite these all too human shortcomings, I am changing. I am evolving – just as many of you are.
I read your comments and forum posts, and the columns of other Beacon writers, and I am inspired. Many of you have already undergone treatment, dealt with relapse, or are dealing with secondary cancers, but you are still living positively, and doing the best you can. And in so doing, you are making a roadmap for the rest of us. Thank you, friends, for your bravery. You seem to know the secret.
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 .
Tabitha,
That was a delightfully insightful column.
Thank you!
Tabitha - Really good stuff and, for what it's worth, in my opinion, your best column!
Another thought provoking and well written column! Once again, I am truly touched and amazed by your writing, Tabitha. You have a true gift with words. Thank you for sharing your gift with us all ... and thank you for loving our son as much as we do. xo
Tabitha, knowing you and Dan for, what, 7 years or so now? I am proud to be a friend to both of you. For your eloquence, your devotion, your thoughtfulness. I can't quite grasp what you are dealing with on a daily basis, but I am thankful for you sharing your journey and your fears with the world. What a gift. I love you both.
Thank you, Ron and Steve for your kind words! I have long appreciated your comments on my columns! We are all so fortunate to have this site to encourage one another.
Sandy, I could never say thank you enough. Without you, there'd be no "us" for Daniel and me. I didn't just gain a husband, but an incredible support system as well.
Patti, you are a dear friend and sweet soul. We love you too and miss you bunches!
Wishing everyone good health and happiness!
Tabitha
Thanks so much for being candid. I don't embrace change either, but have observed the changes in myself and my family as we have traveled through this multiple myeloma trip together. I have settled into a comfort zone these past several years, as I have responded very well to treatment. I keep asking myself, "How will I react if and when I relapse?" There are those around me who are so hopeful and think they are encouraging when they tell me that I'm "cured" or just don't see any possibility of a relapse, and I have to keep wheeling myself around to reality but not get too upset about what might happen. It's quite the pickle to have to live in this reality vs. hope zone, but I put my faith in the Lord and trust Him to carry me through whatever the future holds. And I am so thankful for a community of caregivers and patients who are so supportive.
I, too, entered the "caregiving for a spouse club" when my husband was diagnosed with multiple myeloma in November 2016. Since then, my every waking moment is about multiple myeloma: filling pill packs, sorting through the various drugs to treat side effects, taking blood pressure, taking temperature and bi-weekly trips to the cancer center, not to mention the trips to ICU, weekend clinics when his temperature spikes, and to the ER. He has not done well with treatment, catching one illness after another. He is completely knocked down. I don't know if this is the normal path with multiple myeloma, but it is ours. And yes, it is path for two. I also spend every moment reading and trying to understand this very complicated disease. On the bright side, he is responding to treatment. I relate to this well written column, especially with your mention of needing and praying for the tools to be a good caregiver: strength, restraint, and peace. It takes all three to be a good caregiver – the most helpless job on earth as you wish for it to be different for the one you love. Thanks for your column.
Beautifully written. I share your gratitude for the bravery shown us by Beacon members, thanks for expressing that so well.
Susan, I like the way you put that - the "reality vs. hope zone," and I also attest to the way you cope with it. I would bet that we are similar in that regard.
Hosanna, I'm so sorry to welcome you to the "caregivers club." I'm glad that your husband is responding to treatment, and I hope that it continues. Best wishes for your strength and spirit!
Hummingbird, you're so kind to comment. We are all in this together, aren't we? So thankful that we have this place (The Myeloma Beacon) to share and support one another!
Wishing you and your loved ones happy and healthy days ahead!
Tabitha
Dear Tabitha, I await your column eagerly because you honestly reflect the caregiver perspective. Well written and I shared it with Mark, my caregiver. May your husband continue to thrive without active treatment.
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