Myeloma, Party Of Two: Managing Change 101
I was thinking recently about a challenge that comes up regularly in my professional role as a learning consultant and instructional designer.
I am hired to develop corporate training materials, and one of my responsibilities is helping clients identify the key learning objectives for their training projects.
This aspect of my work got me wondering: If I were to consult with myeloma patients and their families, what learning objectives would I recommend for them? What skills do they need the most?
One of the most important things a myeloma patient can do is to seek care from a myeloma specialist, but that speaks mainly to the physical needs of the patient. What about the psychological needs of everybody involved? What are the key skills for coping with myeloma?
I decided to discuss this topic with my husband, Daniel, who was diagnosed with smoldering myeloma in 2012. This column is our response to that question.
Skill #1: Adapt to and cope with change.
One of the best skills you can learn is how to cope with change.
Adapting to change is tough. Corporations spend millions of dollars teaching their employees how to recognize the need for change, cope with it in a healthy way, and adapt their skills to their new environments.
Myeloma patients and their families also deal with change. I have heard countless patients and their families talk about their experiences when they or their loved one was first diagnosed. All tell similar stories about how shocking it was and how irrevocably it changed their worlds.
If I could hit the rewind button back to 2012, I would tell myself what I should have known from my professional training: people aren’t born knowing how to cope with and manage change. It’s a skill that must be learned, like learning new operating software or starting a new job.
Too often, we’re in a daze when we are first impacted by major change. We just go from day to day, trying to deal with it as best as we can, like a pinball in contained chaos, bouncing off of strobe-lit flippers and sound-making bumpers, until we go down the wrong path and we have to start again.
It’s important to remember that the journey through change is a continuous learning process. Learning how to respond healthily to change makes all the difference between surviving change and thriving in the midst of it.
Seek out resources to assist you in strengthening change skills. Read books on personal change management, attend myeloma seminars, find support through the Beacon’s discussion forum or myeloma support groups in your community, and consider whether you need to speak to a qualified professional.
Also, don’t be afraid to ask your specialist questions, regardless of how basic they sound to your ears. Myeloma specialists have had years to study the disease, and they understand that patients and their families are getting a crash course in myeloma (that they never signed up for).
Most importantly, recognize that, like the acquisition of any new skill, adapting and coping with change takes time. The goal is to live with myeloma and not be controlled by it. The more you learn about your limits, your emotional needs, your trigger issues, and where you find your strength, the more you’ll get a sense that you are doing what you need to do to live with myeloma in a healthy way.
Skill #2: Compartmentalize your life.
Another skill that patients and their families need is the ability to compartmentalize their lives into manageable chunks, so that they are able to function normally.
Life doesn’t stop for myeloma. The circumstances of living with myeloma include some not so pleasant things, and if you are not careful, they can become the focus of each day, choking out the other aspects of life, until only the myeloma remains.
Focus on your work when it is time to do that. Focus on the things in your personal life that make you happy. When possible, minimize the things that take away from your joy. Enjoy your hobbies or, if necessary, find new ones that require less physical exertion. Celebrate birthdays and anniversaries, go to the movies, take the dog to the park, and visit with friends.
Myeloma will take enough of your physical and psychological energy. Don’t give it more than what is necessary.
For Daniel and me, we put some things on the shelf, to be dealt with at a later time. We concentrate on the present, to ensure that today is a good day. This may sound simplistic compared to the gravity that myeloma can bring to bear, but we handle issues as they arise, and we keep moving forward each day, seeking to prioritize and compartmentalize as needed.
Managing change is really more about managing transitions between what used to be, what is now, and what will be in the future. The past is past, and the future will happen. Today, however, is where we live.
Skill #3: Actively practice hope.
Lastly, I would urge you to practice being hopeful.
Hope can help you to recharge your batteries and give you what you need for that day. It shines a bright light into the doubt-filled corners that creep into your mind, and it can calm the anxious spirit. If I’m feeling a bit down, I focus on the things that I’m hopeful about, and before too long, my attitude improves.
Myeloma demands mental toughness from us all. There are times when it’s tough to be positive. That’s understandable. The beautiful thing about hope is that you can have it even when there isn’t a lot to be positive about.
Hope brings peace and comfort to the weary, and it stems the tide of worry. But, most of all, it strengthens us as we look toward the horizon for what tomorrow might bring: a cure.
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 .
You nailed it again, Tabitha! I just love your writing. Thank you for taking the time to share your message of inspiration to others. Good advice for us all!
Tabitha, I enjoy reading your columns, but as a smoldering patient from 2014, MGUS from 2012 (but I think I might have been smoldering a lot earlier), should I be panicking? Should I feel like woe is me? Sometimes I get that from reading some of the articles that appear, not from you, but in general.
I feel like this is all so dreamlike. This isn't happening to me. I just go on living my life as normal. I have good days when I feel like walking the dog, and days when I feel painful and don't want to do anything. I guess this is myelomaland. But I am asymptomatic. I keep praying that this is as bad as I will get and all will stay status quo. But I read about del(17) and panic. When I speak with my doctor at Sloan, he tells me not to worry, that new drugs are being developed and to keep on doing whatever I am doing because I have remained stable for almost 2 years now. (I credit this to taking curcumin everyday.)
I think I need not to worry because it isn't going to help, but I think that by educating myself on treatments and reading what others are going through as well helps.
Thank you for your writing. Keep the faith! Wishing you and your husband all the best.
Susan, thank you so much for your comment. I am not qualified to give any medical advice, but I can tell you that if I were in your shoes, Sloan Kettering is one of the places where I would feel like I was in good hands! When my husband was first diagnosed (with what we thought was MGUS at the time) we didn't hesitate - we moved to Houston to be near a top rated cancer research facility. So, kudos to you on seeking such good care!
My husband's specialist has a similar opinion as yours. She has taken a "let's talk about it then" approach, because the treatment landscape is changing so rapidly with new drug therapies. If that isn't a cause for hope, I don't know what is!
While I believe that myeloma news is an important tool that helps me be a proactive partner in my husband's care, I also know myself well enough to know that it could be too much for me emotionally. It is easy to become inundated with it, so I try to be mindful of my moods and cut back on it if I start to feel a bit down.
I can also relate to your surreal, "this isn't happening" feelings. I used to fantasize that we'd get a set of lab reports that say this has all been a mistake - that something has been masked as something else, and that my husband is perfectly healthy. This is probably very normal for someone in such circumstances to think or feel.
But, then I remember that my husband and I are on this journey together. I need to be where he is ... not where I wish we were. This grounds me, gets my head right, and gives me the strength I need to be positive, for us both, if need be.
You are very wise to not worry, and I bet that you're stronger than you know! I'm wishing you (and yours) the best as well! Keep strong!
Sandra, you are too kind. Thank you so much for your comment! We are all in this together, and I am so thankful that the Beacon gives us this space to encourage one another!
Thank you for practical considerations for coping with MM. In Oct. I will have been a full-blown MM patient for 7 years -- some days I feel that the longer I go, the creepier it becomes with all the treatments I've been on, and never reaching remission. Yet today I just read of a new immunotherapy drug from Israel, now FDA approved, called ImMucin (an "orphan drug") and one that I may use one day. Yes, there is hope to keep treating this disease -- I wish there was something curative though.
You are an excellent writer and I appreciate your talent. Suzanne Gay
Hi Suzanne - Just so there is no confusion on an important issue, I thought I would add some clarifying information to your comment about ImMucin. Specifically, ImMucin has not been "approved" by the FDA. It simply has been designated by the FDA as an "orphan drug".
This isn't just a minor point. FDA approvals for myeloma drugs like Revlimid and Velcade are what allow doctors to prescribe those drugs to myeloma patients without enrolling the patients in a clinical trial. The FDA approval is what makes it possible for doctors to treat patients so easily with the drugs.
An "orphan drug designation", on the other hand, has no such effect. If a doctor wants to treat a patient with ImMucin, the only way to do it is by enrolling the patient in a clinical trial that's testing the drug. And, last I checked, there are no trials testing ImMucin in myeloma patients.
The only thing an "orphan drug designation" does is prevent another company from selling the same drug as the orphan drug for seven years after the orphan drug is finally approved by the FDA (IF it is ever approved by the FDA).
Dear Tabitha,
Thank you for this beautiful column. I really liked how you ended it -
on hope.
Tabitha, I needed your column today. Adapting to change is hard. Since the day almost 4 years ago our 32 year old daughter was diagnosed she has had to adapt along with my husband & I to our new lives. All the treatments, some that have worked for awhile & some that haven't worked, job related things, people that have walked away & adapting to side effects on life style. Some days I find myself totally overwhelmed with sadness & I am not even the one with the disease. I am considering some counseling. It is hard for me that I cannot control this & make it all better as a mom should.
Every time the doctor says there is another drug or trial to try it gives me hope. Hopefully one of these new trials will be the answer for our daughter.
Wonderful writing this month as always Tabitha! Thank you for reminding everyone that we need to be enjoying each day to the fullest. I am proud of you and Daniel and the way you are willing to be helpful to others which means your lives have to be so open for others to know you have hurts, fears, & hopes just like others do.....and the words you share give such encouragement.
Tabitha,
Thank you so much for your well written column. I could have used this awesome advice in January, 2011 when my husband, Danny, 37, was diagnosed with smoldering myeloma. He was diagnosed 2 months after our second child was born. Post partum blues combined with a spouse's cancer diagnosis made for a rough year, and at times I felt like I had no one to turn to who could understand the enormity of the "change" and uncertainty in our lives. He rapidly progressed over 2 years and was treated with RVD, to which he did not respond and was subsequently admitted for salvage induction chemo prior to transplant. He eventually got a very good partial response and completed tandem autologous stem cell transplants at Virginia Commonwealth University in Richmond, VA. He is in a good remission and we are hopeful it will last for many years.
There has been constant change in our lives that has not been easy to manage, especially with two little ones to raise. However, we have learned to take one day at a time and not to look too far into the future. We have cherished every day, even the difficult ones, because we are never promised tomorrow.
Thanks again for your column!