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Myeloma, Party Of Two: The Things We Carry

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Published: Apr 23, 2015 4:45 pm

I was recently talking with a friend about her child’s reading curriculum when I was reminded of a short story, The Things They Carried, by Tim O’Brien. It is set amongst a platoon of American soldiers in the Vietnam War, and it chronicles the experiences of Lt. Jimmy Cross, their platoon leader. Through the story, he carries physical reminders of home with him, until one day he parts with them, knowing that he must do so in order to survive the war.

We all carry things with us every day that shape our world in subtle – and sometimes not so subtle – ways. Some of us, for example, may carry keys on key rings to property long since sold, or we may hold on to old photos like priceless possessions.

My husband Daniel, who has had smoldering myeloma for three years, and I carry things as well, but they are so much a part of our experience that we could never part with them. They define who we are, and our life with myeloma.

It’s impossible to be touched by this disease and not have an awareness of its life-changing impact. Whether you’re a patient, caregiver, parent, friend, specialist, researcher, or member of the clergy. Whether you are the one with your pulse throbbing in your neck waiting to hear the diagnosis, the caregiver fearful of what might lie ahead for your loved one, or the newsgiver balancing optimism with empathy. If you know someone who has been diagnosed with myeloma, then you know how the moment of that diagnosis makes you aware of the uncertainty of life and the need to live it purposefully. Make no mistake, this is a life lesson that applies to us all on this earth, but Daniel and I carry that awareness with us every day.

Another thing that Daniel and I carry is a sense of humor. While it may not be easy to laugh about multiple myeloma, there are so many wonderful things to laugh about every day. Sometimes we act silly, jamming to our favorite air guitar classics from the 80s, or we laugh at our three spoiled cats, for whom we are well-trained staff. Or we crack up watching the far-fetched antics of BBC’s "Top Gear." The laughter is good for us. It washes away the stresses of the day and the worries of the mind, until we can just live in the moment and feel joy.

Courage is something that we carry as well. With Daniel, as with all the myeloma patients that I’ve come to “know” through The Beacon, I am amazed by their seemingly endless supply of courage. With Daniel in particular, I always find him to be calm and strong. He never runs out of that which he needs to approach this disease in a productive, thoughtful, and proactive way. His strength gives me strength. His courage makes me a better caregiver and spouse. I find it beautifully ironic that, in the midst of his cancer, Daniel is still taking care of me even as I am trying to care for him.

Daniel and I also carry faith with us. This journey would be staggering without it. We have faith in the specialists who observe his condition and determine what his treatment should be. We have faith that researchers will develop treatments that will bring long-term remission or a permanent cure for myeloma. And we have faith that what we’re given will be enough for now, and that we will have a tomorrow.

Hope is one of the most important things we carry, and it can come in tiny packages. A few weeks after Daniel’s diagnosis, we were eating Chinese food when I opened a fortune cookie that read, “Your dreams will come true.” Since my dream is for Daniel to be cured, I’ve carried that little piece of paper with me ever since that day, as a reminder that one day a cure will be found, and hopefully my dear husband will receive it.

While I don’t know what the documented benefits of hope are to a patient, I believe that hope is sustaining to us mentally, emotionally, and physically. Daniel and I believe that a road lies before us, lit with options, treatment possibilities, and hopefully a cure. We hope that we are making the decisions we need to give Daniel a long life with the best possible outcomes. We research, follow myeloma news, and save our resources. We make strategic plans to be proactive with his smoldering myeloma so that we will have the best information and options when his status changes and new decisions must be made, even if that means moving to another city. I’m so thankful for the hope that we have, for without it, we might not be focused on what we need to do, or what matters the most.

Of all the things we carry, the most important is each other. I believe that we all carry one another. Anyone impacted by this disease feels the weight of his or her fellow person: a patient who needs a cure, parents who need their sons and daughters, spouses who need their loved ones, and children who need parents. I think of the “friends” I’ve made, whom I’ve never met, simply by reading their columns on The Beacon. I think of the patients that we sit with as we wait for Daniel’s appointment, and some of the conversations we’ve had. I think of the families left behind by those who have passed away from myeloma, and I feel connected to them. I pray for them, and I carry them in my heart. How could I not?

The things we carry define us. They shape how we see the world, or how we live, but they must not hold us back from living. Perhaps that is the most difficult task when you’re diagnosed with multiple myeloma – to find the right life balance again. Yet it might be one of the most important things you can do.

We all carry awareness, humor, courage, faith, hope, each other, and more. Sometimes, we also carry fears, pain, and the unpleasant things of life. This is only natural. But, for Daniel and me, we strive to only carry those things that help us celebrate life, not be trapped by it. I hope that the things you and your loved ones carry are life-affirming as well. Until next time, I wish for you a light load filled only with that which you can carry.

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 .

Photo of Tabitha Tow Burns, monthly columnist at The Myeloma Beacon.
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9 Comments »

  • Upasana Pannu said:

    We do carry the good things and the not so good things at the same time, all of us. Life is a sum total of all of them and it is cherishable with all the things, the good and the not so good ones. Thanks for writing. Wish and pray for health and safety for all of us.

  • Nancy Shamanna said:

    Thanks for the nice column, Tabitha. It must be really stressful to be watching and waiting for a few years with SMM, but you carry a lot of inner strength too! I can relate to having a sense of humour. When I was being treated with induction chemo, Dilip and I used to watch all the funny movies we could find on the movie channel at home. That seemed to help to cheer us up! We still watch funny movies, but not non-stop as we did then.

    I think you are right that with all of the scientific discoveries being made, Daniel may be cured one day. Hold on to the fortune from that cookie!

  • Peter P said:

    Nicely written Tabatha. You have got it right when you talk about our emotions when the diagnosis is delivered and it is easy to sometimes feel sorry for ourselves, but to have hope, as you write, is just so important. Like you I hope someday there will be a cure and that I will be around to benefit from it. All the best to you and your husband.

  • JoAnn B said:

    Great column. A must re-read on the dark days.

  • Joan Allemand said:

    Great article Tabitha.

  • Tabitha said:

    Thank you all for your comments. JoAnn B, I'm especially happy that this might serve as a bit of inspiration on the dark days. Hope is a great teacher for us all.

    Wishing you and your loved ones good health!

    Tabitha

  • April said:

    What a thoughtful and beautifully written column, Tabitha. Nicely done.

  • Sharon said:

    So wonderfully written, Tabitha! I know each of these articles from you serve others with honesty that others feel, but can't or will not allow themselves to speak. This quote from your article is SO IMPORTANT in life for everyone and especially those enduring myeloma, or any other life struggle. Thank you for your beautiful expressions in your columns.

    "But, for Daniel and me, we strive to only carry those things that help us celebrate life, not be trapped by it. "

    Sharon T.

  • Carolyn said:

    Very inspiring article Tabitha. Was diagnosed with smoldering multiple myeloma out of the blue last April and am still trying to get my feet back under me. It's so reassuring to read your articles because you and your hubby have been there and I can relate. Thank you for sharing your heart.