Myeloma, Party Of Two: The Time To Be Happy Is Now
The winds of change are blowing, as they do for all of us – myeloma patients, caregivers, and healthy people alike – and so I answer with the activities of normalcy. Lately that means putting away the holiday décor.
There’s something comforting to me about putting everything back in its place, for as much as I love gazing upon my Christmas villages or the white porcelain ornaments on the tree, I always welcome a return to uncluttered counters and furniture in its rightful place.
Much to my surprise, however, I do have one holiday leftover that I’m keeping, and I’d like to share it with you.
It was a week before Christmas, and I was rushing about town, buying gifts in a maddening frenzy, like Santa’s whirling dervish. I was at a bath and home store buying up insulated sports cups and candles when I happened to look up and see a framed quote that caught my eye.
It was a clean white picture frame on a white background with black capital letters, and it read: “THE TIME TO BE HAPPY IS NOW”.
It was a clarion call, and I heard it loud and clear. There I stood, blocking the narrow aisle with my shopping cart and a prehistoric, open-mouth stare. Pulled in as if trapped by a tractor beam, I moved closer to read the sign again. THE TIME TO BE HAPPY IS NOW, it said. The words were awesome and vital, and in the hustle and bustle of the holiday season – with its scheduling demands, gift lists to knock out, end-of-the-year work deadlines, visits to the specialist, and anxious waits for lab results – I took a much needed moment to pause and reflect.
I looked around to see if anyone else had registered the power of this message. They hadn’t. Other shoppers still rushed by in their quest for towels and discounted sheets. I reached out to pick up the picture, when I discovered a companion sign next to it. It read, “ALWAYS PUT YOUR FEARS BEHIND YOU AND YOUR DREAMS IN FRONT OF YOU.” Yet another message that called me out. I was in awe. I stood there for ten minutes just re-reading the messages, thinking about the meaning they had for my life.
The capital letters made the text seem emphatic. And the simple black font on the white background looked like a commandment, a message that I was supposed to hear, a dialogue for my inner voice.
Needless to say, I bought both pictures that day. They now hang in our bedroom so they are the first things I see every morning.
I think about the messages daily, like a mantra. The cadence of the words hushes the worry and helps me to focus on the wonderful life that my husband Daniel and I share. It helps me to be strong and be the caregiver that he needs me to be. I seek and find a beautiful normalcy in the work-a-day moments when it’s just us, and I don’t see the myeloma or my fears about the future. Instead, I see the twinkle in his deep green eyes, and the way his smile lifts his lightly freckled cheeks when he throws his head back to laugh. These are the perfect gifts of today. This is my nirvana. Why would I ever choose to miss a moment of this?
As a caregiver, I know that I don’t live in a vacuum. My feelings and my thoughts come with a keen sense of responsibility; they can be uplifting to him, or they can bring him down as well. I want him to be happy; and so I choose to be happy as well.
Since the recent release of new myeloma diagnostic criteria by the International Myeloma Working Group, Daniel and I have had opportunities to practice not worrying. These new criteria would move his diagnosis from an average risk of progression to a high risk of progression, whereby an estimated 80 percent of smoldering patients will develop myeloma within two years. And, while he does not have any "CRAB" features other than slight anemia, Daniel’s involved serum free light chain level is above 100, his monoclonal (M) protein is on the rise, and his hemoglobin level had decreased by his last visit with his myeloma specialist. Based upon what I’ve read, some myeloma specialists might even suggest starting treatment now, given his free light chain levels.
The winds of change are blowing indeed, with many specialists, patients, and caregivers asking questions about how smoldering myeloma should be defined and treated. Many specialists are considering whether it’s better to treat high-risk smoldering patients with medication instead of using watchful waiting protocols.
I’m glad that myeloma specialists are trying to prevent end-organ damage from occurring in smoldering patients who are likely to progress to active myeloma. But having symptoms that bring Daniel closer to treatment also brings us to a heightened level of anxiety. Daniel says that adjusting to a “new normal” really means “getting used to living in crisis mode.” I think he may be right.
For me, the question has always been whether Daniel is still smoldering, like it was a shield of plausible deniability. The longer he could smolder, the longer we could hold out for a cure, and hopefully he might be spared a stem cell transplant or myeloma maintenance therapies. Now it seems the real question is whether he is likely to progress, and when treatment should begin. As his wife and caregiver, it’s getting harder for me to take refuge behind the terminology. Whether he has average smoldering myeloma, high-risk smoldering myeloma, or active myeloma, the roads all seem to be leading to treatment. Therefore, I will be positive and hope that he can smolder awhile longer, knowing that if he can’t, then at least we didn’t waste yesterday worrying about tomorrow.
Despite all this and what may be a challenging new year, the time to be happy is now. Therefore, with faith, hope, and my special signs on the wall, I will put our dreams before us, fears behind us, and collect all the joys of today as we continue to walk the smoldering road.
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.
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For me, the smoldering stage caused more anxiety than active myeloma! Hang in there!
I love your article. Thank you for writing it. Very wise philosophy, which I think I will "borrow". -- Smouldering in Canada!
Thanks Tabitha for the great column! Those are nice sayings. Living and being happy in the present is a gift which we don't always grasp in our busy lives.
I am a fellow SMM and have so appreciated your articles. How wonderfully you articulate the angst of SMM and also inspire hope! Best wishes to you and your husband as you collect the many joys of today.
Tabitha! Thank you for your article. As a fellow caregiver, this is exactly what I needed to read tonight.
My husband and I often talk about "the opportunities to practice not worrying" as well as the realization of how much we were living our lives in fear before the MM diagnosis and how the diagnosis has just magnified it and brought it to the surface even more. It seems, for now, we get to strengthen ourselves by redetermining over and over not to live in fear. So … onward we go with our fear behind us and our dreams in front!
Thank you for the inspiration!
I love this - thank you
Tabitha
Having gone through smouldering to active MM and now treatment for 4+ years, I have to disagree with the assessment that "you have to get used to living in crisis mode". In fact, living with treatments like Velcade, Revlimid, etc. make your life very predictable. The last crisis I remember was a blood clot in my lung when I was in the smouldering stage many years ago. Since then, no crisis mode at all. Just very predictable drug regimen with predictable side effects.
The drugs developed over the last 10 years have made the journey predictable. I have friends who have heart issues that experience far more "crisis" modes than anything I have dealt with since the blood clot years back. I know I have an incurable cancer, but yet life is good, enjoyable and I am able to do most things that I did prior to MM, albeit a little more slowly.
You are both still young, with youthful energy and vitality still coursing through your veins. Don't be too quick to assume your life will be governed by Crises. That is not my experience.
Tabitha, thank you for yet another inspiring and well written article. You have a wonderful gift for putting into words what many others feel. I love your articles and, after reading each one, I eagerly await the next. And Eric, thank you for sharing your uplifting life experience and the hope that life does not have to be "living in crisis mode".
Tabitha - A great column as usual. I would strongly echo Eric's comments. I am coming up on living with this disease for 3 years now and have run the gamut of experiences from a diagnosis of smoldering to a stem cell cell transplant. While my life has changed, the changes are manageable, and I hardly feel as if I am living in a crisis mode. Like Eric said, life is good, enjoyable, and I am doing just about everything I did prior to being diagnosed.
Thank you all for your comments. It's so good to hear from you.
Karen, I hope that you are right! We're going to give it our all when the time comes, but I do hope that the treatment is less daunting that what we've built up in our heads.
Jeannie, it is so wonderful to hear from a fellow caregiver. Thank you for your kind sentiments. I think that living with myeloma has a different set of challenges for caregivers than it does patients, which can be difficult to express since we are not the ones who are afflicted with the disease and yet we are significantly impacted by it as well. I would give anything to take this burden from him, as I'm sure you would do for your loved one as well. Your comments, along with insights from Christine, Nancy, Blee, Heather, and Sandra, are all a part of the process that helps me to be a better caregiver. Thank you!
Eric and Steven, I agree that life is good and enjoyable. Daniel and I feel so blessed. Even with the myeloma, we still consider ourselves to be so very, very fortunate. We, too, believe that he'll be able to continue to do some of the things we enjoy after his treatment begins. We look forward to traveling and adding to our antique collections.
I feel that I should provide a bit of context about what I meant by "crisis mode", which is not a prediction of the future, but rather a comment on how far we've come. Over the past three years since Daniel's diagnosis, we have experienced a lot of change in a very short time, with some of it related to the myeloma, and some of it not. We've moved to a new city, found new jobs, helped family through major health problems, lost a pet to cancer, and other concerns. I'm so relieved that all that is behind us though, and we can look forward to the present. Your story and Eric's stories are wonderful testaments to living well with myeloma. I hope that things will go smoothly for Daniel too. Thank you both for your inspiration!
Tabitha,
Your two signs do inspire me to continue to "take my weather with me." The weather I choose is the warm sunny days of my young years at the Indiana Dunes. I find the cold Northern Illinois weather is no match for my own portable weather system deep within me. After two heart attacks, emergency heart bypass surgery, three hip replacements, a knee reconstruction, cancer surgery, a second heart surgery, three other surgeries in the last ten years, and now unusual protein in my blood with all the x-rays, CT scans, 24 hour urine screen, blood tests, consultations, and second thoughts, I have had lots of opportunities to choose happiness and take my weather with me. Like most of us, I have the ability to read a calendar and count and know the likelihood of storms. But, deep inside, those warm sunny days are my choice.
Thanks for all your articles.
Thank you for your inner most thoughts, fears, and hopes that you freely discuss with all your readers and express in an amazing way in your articles. As difficult as it is for you and Daniel to share with us, know it also brings a sense of focus on day-to-day living and loving. Your willingness to share helps others not feel alone on this journey as well.
Dave, I wish many more hope-filled, sunny days for you! I appreciate your beautifully written comments. Stay strong!
Sharon, the pleasure is all mine. I thank you for your encouragement, and your kind words.
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