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Myeloma, Party Of Two: Progression Isn’t The End
By: Tabitha Tow Burns; Published: November 28, 2014 @ 6:13 pm | Comments Disabled
The leaves have turned, and they have lined our yard with golden hues of brown and russet — a reminder that all good things must change in their own time. It’s almost Thanksgiving, and I find myself very thankful. I’m thankful that, while the winds of change have blown, we’re still here; my husband Daniel, smoldering with asymptomatic myeloma since 2012, and me, his caregiver.
The topic of my column this month came to me while attending a patient education program in Houston several weeks ago. The program gave myeloma patients and their caregivers the opportunity to learn about current treatments on the market and where medical research is heading. We also had a chance to ask questions of a panel of myeloma experts.
My husband and I learned a lot, especially from the patients who shared details about how they coped with their illness and the strategies they employed to maintain a high quality of life. We also had the chance to talk with some of the leading minds in the field about his case, which was timely given the new diagnostic criteria for myeloma [1] just released by the International Myeloma Working Group.
That being said, the conference was a sobering experience as well. Out of an audience of approximately 200 people, we appeared to be the youngest people there. Looking around the room underscored for us the uniqueness of Daniel’s diagnosis at such a comparably young age. We also represented a very small demographic of smoldering patients. By far the majority of the patients and their caregivers were fighting active myeloma. This is where it got a bit tough for me, at least because it represented for me the finality associated with this disease and an endgame that I dread.
During the breakout sessions and then afterwards during the panel discussions, I heard many caregivers, patients, and specialists talk about the considerable challenges associated with treatment and survival. Admittedly, it was tough to hear patient after patient or caregiver talk about their experiences, what it had done to their lives, and how they struggled to keep a positive outlook amidst the ravages of both disease and treatment. I was repeatedly impressed by their courage and grace — two qualities that I fear I lack in the quantities needed for this difficult journey to which we’ve been called.
Now approaching the third year since my husband’s diagnosis, neither of us have any illusions about the probability of his progression to active myeloma. Every patient testimonial seemed to bring the message home that we were not immune, despite what our hopes and prayers might say otherwise.
At one time, these patients had all been smoldering too, I thought, even if they didn’t know it. Progression could be just around the corner, they all seemed to say, and with it neuropathy, "roid rage," failed treatments, immobility and depression — which were all discussed in vivid detail in the breakout sessions. I sat there almost numb with the inescapable reality of what could be lying in wait for us, possibly sooner (I feared), rather than later.
I heard from caregivers who discussed how strained their relationships became after the understandable toll that endless appointments, procedures, and medicine took on the quality of life for their loved ones. They also discussed the hardest part of their role: trying to keep a positive attitude for their loved one, while being worried about whether the cancer would take them.
It wasn’t till a few days later that I made it past my emotions and I was able to process what I’d heard.
After much pondering, I was able to identify two main takeaways with a thankful heart.
First, the patients at the conference with symptomatic disease were living with myeloma. Let me say that again: they were living with myeloma. Active, full-blown myeloma wasn’t the end for them. They fought their cancer daily, and they were surviving.
Some of them were living vital, vivid, and able lives nine and ten years after a transplant. It was a significant thing for me to internalize. As I listened to the stories, I realized that, although active myeloma may be what I dread, it is not the end for us.
This realization led to my second key takeaway.
I think that the fear of progression has simply grown to be so big for me that I struggle to get past it. I can’t remember what it was like to not live with this cancer in the back of my mind, to not worry about my husband in the days before his diagnosis. I wonder if any other caregivers feel the same way.
When I think of every oncology visit, when I hold my breath as they read his lab numbers, when I consider whether today is the day that my husband progresses from smoldering to active myeloma, I am confronted with my fear of the unknown.
The unknown – the lurking question of what happens after progression – is the thing I’ve built up in my mind, and it is the thing I fear the most.
I’m thankful, however, that the patient education session gave me a much needed reality check. I am grateful to the myeloma patients who shared their message with us and reminded me that myeloma is not the end.
It’s about acceptance. Just as a new leaf that turns in the wind with the passage of time, our situation may change too. My task is not to question our path, but to make peace with it; to love well in the midst of it; and to cherish every moment of it.
I pray that I will be up to the task and perform half as well as the caregivers who have gone before me.
At the end of all things, one thing is constant: like caregivers everywhere, I will be here, loving my patient throughout all the seasons of my life.
Happy Thanksgiving, friends. I wish you all good health, peace, and thankfulness.
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 [2].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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URL to article: https://myelomabeacon.org/headline/2014/11/28/myeloma-party-of-two-progression-isnt-the-end/
URLs in this post:
[1] new diagnostic criteria for myeloma: https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
[2] here: https://myelomabeacon.org/author/tabitha-burns/
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