The Mind Game of Multiple Myeloma

It's tricky having multiple myeloma. As I've been talking with other patients, we've not only shared the physical challenges it poses, but also the mental ones. Myeloma is a mind game.

We have much to be grateful for in myeloma therapy because unlike 20 years ago, we now have a wide range of treatment options that are helping us live much longer. This is comforting and hopeful. But patients are still struggling with and dying of the disease. Living longer requires physical, mental and emotional fortitude. We know that seeing a myeloma specialist can help us craft a better treatment strategy and we also know that we should stay as fit as possible so we have a wider range of treatment options. But what can help us navigate mentally and emotionally? 

In the Anne Morrow Lindberg book "Gift from the Sea," she graciously states the issue. We will all suffer in some way in this life, but how we respond to the suffering is the true choice and challenge. 

“I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise, since everyone suffers. To suffering must be added mourning, understanding, patience, love, openness, and the willingness to remain vulnerable.”

I know many myeloma patients who are suffering, so how do others deal with this rare blood cancer? Here are seven ideas of inspiration from my myeloma friends: 

Point Out the Positive

I think what helps me the most is counting my blessings. I feel like everyone has challenges and myeloma just happens be mine. A lot of good things have come from my myeloma journey, including an appreciation for my community of supporters, the opportunity to live more mindfully in the present, closer relationships with my family, a stronger reliance on my faith and the chance to encourage others, just to name a few. Writing down what I am grateful for each day has helped me see all of the hidden blessings of myeloma and helped me realize that I am still able to do many things that bring me joy. --Jill Z.

I refuse to be defined by my disease. I focus on what I can do—exercise, nutrition, self-advocacy, educating myself, reaching out to others, and enjoying life. I keep my eyes and my heart open to see the beauty around me. I also focus on gratitude—there is always something to be grateful for! I rely on my faith, which helps me find meaning in my struggles. Maybe most of all, I cling to hope—I dream of the day that I will look in the mirror and say to myself, "I HAD myeloma." --Paula K. W.

I stay positive. Have good family and friends, a great support group. Stay active as possible. I've really enjoyed gardening and watching Beautiful things grow around me. I look at all I have...not what I don't..Life is good.... With all the research and development going on in the MM community things will just keep getting better for us all.--Paula N.

Meditating, daily walks in nature with my pooch. Lots of camping, lots of travel and just living for today and trying not to worry about things that have not or may never happen. It’s an amazing world full of amazing people. Gratefulness and love and connection are key for my happy life. 5 years in and couldn’t ask for a better life (most days)--Steve P.

What I do is meditate morning and night, have positive thoughts and lots of prayer when I feel weak both physically and mentally. My family is close so I pull on that strength too!!--Theresa H.

For me concentrating on what I still can do and not focusing on what I cant do anymore, and keeping my faith that one day there will be a cure--Stuart G.

Live Daily and Set Goals

I made myself come to terms with my new normal. It’s a waste of energy to spend time wishing for a life that isn’t ever going to be again. So I focus on what I have and spend my time doing what I love. --Linda F. M.

I try to focus on daily goals. Taking a walk, making dinner for the family, doing some laundry. Each day I can accomplish something instead of just laying in bed is a successful day and encourages me to keep at it. --Wendy M.

Try to compartmentalize and take it one day at a time. I learned this one from other patients: allow yourself to be upset, cry, whatever when you need to, but don't let it last more than about one day, then pick yourself up and keep moving forward. --Adina E.

Got to admit I do things I’m not supposed to. Like creating a new shade garden. If I sat around I would go crazy.--Lynda N.

I find ways to engage my mind fully in something else- like gardening. Something I am actively involved in, not passively watching.--Cindy C.

I plan things to look forward to and just stay active.--Mona M.

I’m hitting up all the projects I never finished or started. I retired so I have time to do me things. Found a knitting group, joined the Y through Livestrong and have taken some painting classes. I’m enjoying me. Plus I have a supportive family.--Kris L. 

Humour is also a great stress reliever. I joke about my misadventures and chemo brain...and it helps everyone around me cope as well. I also write. Although I have not added a lot to my blog in the past year, I still go back and re-read some of my earlier postings to remind myself of how far I have come.--Linda P.C. 

It helps to set a goal even a small one every day and do it.--Susan L.K.

I paint, garden and keep busy doing projects--Annette L.

I can only do about 10% of what I used to do. So I keep a list and mark off what I have accomplished.--Pat R. 

Sometimes Denial is good! I am busy living life...and we just try to structure my care & life the best we can so we can continue traveling, and doing the things we like!--Kathy K.C.

I have made a point of enjoying my life. One thing I do is aim for my sons next milestone birthday. I was diagnosed when he was 8, aimed for 18, he is 21 in September so that was my next goal, then it will be 25, then 30.--Heather H.

Having small goals and things to look forward too (even simple things) help me.--Jill T and Mary Ellen H.P.

Go Outside and Exercise

Yoga, meditation, walking in nature with my dog. -- Lisa D.

Meditating, daily walks in nature with my pooch. Lots of camping, lots of travel and just living for today and trying not to worry about things that have not or may never happen. It’s an amazing world full of amazing people. --Steve P.

Some days walking helps some days yoga, reading or meditation. Every day is different for me.--Tricia C. 

 I try to keep active, have been walking my 5km walk whenever I can and enjoy the surroundings. Also have done yoga and I am a golfer. But in the last few months I have struggled with my back aches, sciatica, etc. It wears me down but still try to keep positive.--Shirley B.

Exercise, getting out in nature--Paul S. 

I’ve gotten to the point where I don’t worry about it anymore. I’m aware that I bruise easily, my bones ache a little bit and I tend to get pneumonia once a year. Aside from that I try to eat correctly and to get 2 hours of rigorous exercise 5 days a week. What happens with the myeloma is going to happen whether I worry about it or not.--Tony W.

Be Social

It helps not to have to manage it alone. Great friends and family support goes along ways in trying to manage the ups and downs associated with the disease.--Joel O.

The best thing for me is to spend time with my Grandchildren!--Kathy S. 

I got an amazing therapist. It made all the difference for me.--Anthony M.

Focus on Faith

Mike Katz was a myeloma patient advocate who pushed for lower doses of dex, helping the research community to identify that lower dose dex did an equal job as high dose dex. My guess is that many marriages were saved because of Mike. In his advocacy talks, he would regularly say "Having myeloma is not a bad time to get religion." For me, my faith helps identify the purpose of adversity (we are here to learn), ask for and receive greater wisdom that I am capable of alone, and helps me find sermons in the stones. --Jenny A. 

Prayers, positive thoughts, family, goals in life, keeping busy, still working a full time job and no bone marrow transplant as of yet. No feeling sorry for yourself....No it hasn’t been easy. Broken ribs four times, broken leg, fractured shoulder twice, T-11 disc in spine 75% gone, 3 crushed disc in spine (5 inches shorter now) broken ankle and broken wrist, but with all that I still continued working and that and God has kept me strong. I never once gave up! --Frances G.

For me, faith has been the rock I've clung to. I don't feel like this caught God off-guard even if it did catch me unprepared. Friends praying for me have been a great support.--Lucy L.L.

Prayers--Diane A.

Get Educated

Lots of research. -- Mark O. 

I learned a long time ago to walk and simultaneously chew gum, so I can multi-task. We all will die, sooner or later as I know of no one getting out of this life alive. Born & raised in the greater LA area, so earthquakes have ALWAYS been a part of my life. And I'm a life-long runner, outside-road rat variety. I've always expected either a quake or driver running a traffic control would take me out. I can watch for drivers, but can't really do anything about either of those. Then they added MM to the mix. So, what I've done is to become somewhat knowledgeable about this disease, and learn to question what those (my health care team) suggest in the way of treatments. But to always make sure their suggestions met with my specific needs. My current specific treatment for example includes Ninlaro because when it became time to again add a proteasome inhibitor to my treatment, I was working full time and going into an infusion center for an IV or shot was simply inconvenient. Knowledge is power to shift the course of treatment, even if it doesn't change the inevitable outcome. --Brian Helstein

Serve Others

At the age of 48 I started college, acquired my masters in psychology after 8 years... interned 3,000 hours to be a licensed psychotherapist, built a thriving private practice, then diagnosed. Psychotherapy is not a job where you can just call in sick. Patients depend on you to be there weekly. So, I had to close my practice. That was hard. I have gotten through it with my faith, believing that God knew all of this before He made me, and changing my purpose from helping others as their therapist, to just helping others on a day by day basis as God brings them in my life. --Mary V.

I have continued to work. Took 2-3 months off when I first started my chemo. I am in remission for 4 years now. I work at the YMCA and started the LiveStrong at the YMCA program 1 year before my diagnosis. This is a free 3 month program for any cancer survivor- check to see if a YMCA near you offers this! It will help you gain strength, stability and social support. I participated in it as well as instruct the class.--Becky H.M.

Spending my time in the service of my fellow myeloma friends brings me a terrific amount of joy.--Jenny A.