Myeloma, Party Of Two: Progression Isn’t The End
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 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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Happy Thanksgiving, Tabitha! The first patient conference that I went to, which was right after my diagnosis, was very informative but also very sobering. I learned a lot, and listened to speakers whom I would get to know better afterwards too. Luckily my husband and I had a friend there, who was diagnosed a year or two ahead of me. He asked in disbelief why I was there! We work together on a committee for the preservation of a natural park here. This was five years ago and we are still here! Treatments have evolved, and some of the problems of the past with myeloma seem to be getting better, especially some of the quality of life issues. So take heart! I enjoy reading your columns!
I smoldered for the first 18 months after my diagnosis, and I was also terrified of progression. The day I learned I progressed to active myeloma, I cried and threw up all the way home from the Mayo Clinic. Once the news had settled in, however, I realized the fear of progression was actually worse than the reality. That day was seven and a half years ago, and I'm still here, raising my daughter and living a very active life. Best of luck to you!
Hi Tabitha,
I know you expressed concern about how strong you would be when/if the time came that the disease progressed. I know you only from what you have written in these columns, but I can tell that you will have that strength. You do what you have to do, and you just keep going. Sometimes, I do think the fear of the unknown is the worst. I know that waiting to find out what was wrong with me was the hardest. When we had the knowledge we needed, we could see a clear path ... to get treatment and to deal with each thing as it came along. I am now on Day 101 post SCT and doing very well. We just do what we need to do as a family and keep going. We are living with this, truly living life to the fullest. I am sure you will be able to do the same!
Worrying about what the future may or may not bring can be debilitating. 2000+ years ago we were told "So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles." (Matt 6:34). I, as the myeloma patient, and my caregiver wife, have tried to live by these words, and the results are amazing. Instead of worry and fretting, we enjoy each day, solving or dealing with that day's issues. Tomorrow is another day. We cannot do anything about it by worrying what might or might not happen, wasting precious time and energy today.
We still plan for the future, but we realize we cannot control the future. The only thing we can do anything about is what is happening right now. Living the best life possible from a nutrition, exercise, pharmacology, naturopathy, spirituality etc, perspective each day, gives us the best shot possible for the next day. Then tomorrow turns into today and you deal with it like you deal with every other day.
We have been doing this now for almost 4 years post diagnosis of active myeloma. When diagnosed, I could not see myself alive and enjoying a full life even 1 year into the future. However, "one day at a time" has allowed us to enjoy 4 wonderful years, even with myeloma.
Just remember the old joke - how do you eat an elephant? One bite at a time.
Hi Tabitha I've been reading your column and I've encouraged me to tell you something. I read that your husband has an indolent myeloma from 2012, which is young, that you are preparing for progression to myeloma and that you have been very afraid and have many questions, and reflecting on the issue have come to the conclusion that we myeloma patients get used to living with cancer. I want to tell you today that, at the age of 45 years, I was diagnosed with a MM of high risk with a front plasmacytoma which swept away part of my skull; that, after treatments and transplant and maintenance, I've been nearly four years in complete remission; that I have quality of life and, although I've had a very, very bad time at times, now I'm well; and that you can live with MM and not think about it all the time. Side effects? I still have one, but I'm alive and that's the most important.
Good luck and lots of encouragement.
Thank you for sharing your success stories. It's a good to hear from so many who are living vital, happy, healthy lives for many years after diagnosis. I keep focused on all the blessings in our lives, and when things a bit tough, then I try to remember that life is meant to be lived, not worried over.
Nancy and Karen, thank you for all the ways you inspire me with your columns and your insights. You may have no idea how many people you impact with your perspectives, but you should know that you impact me monthly.
Kim, your reassurance is exactly what I needed this month! I was sharing with a friend that when you feel like you have little control over something so critical as a loved one's health, then it's easy to worry that you're not doing enough or that you're not as strong as your mate. I'm beginning to think that caregivers just exhibit a different kind of strength.Your comments were just the pick me up that I needed this month!
Thank you Eric for the scripture. That is a good one for sure! It reminds me that all will be well, and while I may not know the destination, it's not needed for the journey.
Teresa, I appreciate your encouragement as well. It sounds like you have been through a lot. I'm so glad that you're still fighting!
Thank you again everyone. Goodnight and good health!
Tabitha
You wrote a beautiful column, Tabitha. There is strength in numbers, and we can all help each other stay strong / live strong. Thanks for sharing your experience at the conference.
SB
Count your blessings that the clock is still ticking for the active phase to begin. My wife was diagnosed with advance high risk stage 3 myeloma. Much bone damage had already taken place. She now is wearing a back brace. She is still in the hospital going through a SCT. She has handled it well so far. Perhaps your husband can avoid much of that misery. There have been so many new treatments that have become available. I really would not be surprised to see what amounts to a cure within the next 5-10 years. Hopefully with these new advances your husband will have many years to enjoy.
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