By Jennifer Ahlstrom | Posted - Apr 1st, 2017

 

 

 

 

Riding the Myeloma Roller Coaster Part 2: Patient Tips on How to Cope

How do your myeloma friends cope with the emotional ups and downs of myeloma? They have some great ideas. We asked myeloma patients in our online support group how they coped and here's how they answered. Thanks to everyone for your great ideas!

1. Find a Support Group

  • Karen C.: Wow. the list is endless. at the top of the list would be a support group, a trusted specialist, one day at a time.
  • Karen: I put aside 1/2 day for me to do whatever. Also, what Karen C. said, support group and yes one day at a time.
  • Helen: Join a support group. From them I learned so much. Stories are so different but we are the same in battling this cancer. But most importantly Live Your Life. Do what you can, life is too precious to let this win.
  • Mf: You guys. Seriously. If I hadn't met everyone online.. and I have made some good friends here. I would have been a mess. I think having people who live this is the only way to emotionally get through this, since nobody else really understands.
  • Julie: And also incredibly helpful and healing are in person support groups and all the Myeloma Crowd online groups! They are so incredibly helpful and supportive!
  •  Abbie: Online MM groups, it always helps me to know when I'm at a low on the MM rollercoaster, that is it so so so normal and and I'm not the crazy one. I read fellow members emotional stories and they are similar to mine. It make me feel ok with my emotions. Also I allow myself to spend a day or two at a low, to me it's ok, as long as I'm just there for a short period of time.

2. Stay Busy With Things You Love

  • Renee: Anti depressants. Walking. My dogs. Cleaning (yes I'm kind of a clean freak) Oh big stress reliever for me is sewing and dancing and getting my fit bit steps!
  • Janis: Reading, gardening, genealogy. Anything that takes your mind off of it for even a little while is good.
  • Sarah: Exercise. Getting together with friends regularly. Playing with grandkids. Journaling. Eating healthy most of the time. Walking in nature. Getting to bed at a reasonable hour each night. Getting regular check ups.
  • Chrissy: Chocolate
  • Kathy: I try to stay positive by getting every day & doing something out of the house. It could be you going to the store or having a nice lunch out. I also plan trips it could be a few days away or something big on my bucket list.
  • Christina: Keeping busy at work and spending time with friends and family keeps my mind off of it.
  • Julie: And most important, surround yourself with positive, helpful people, never forget your passions and do whatever you want every day, no matter how small it must be. Smile when u can and thank your care team for all they do for you. Make each day a "bucket list" day when u can.
  •  Mangla: Listening to music, meditation, yoga, good veg diet, surrounded by friends, support groups
    living a normal life, l never think, l have multiple myeloma.

3. Stay Physically Active

  • Rebecca: Exercise and good nutrition. Deep breathing to manage anxiety l use the 4-7-8 regime. Breath in for count of 4, hold for the count of 7 and breathe out for the count of 8. Do this 4 times to release tension. For us rural folk it is difficult to find adequate peer support to l use online groups like this.

4. Exercise Faith, Not Fear

  • Lynn Deanna: Having faith in God, prayer
  • Mary: Prayer, my own and my church family
  • Jacque: Faith. . . .I try to see all the blessings surrounding me while my life is being turned upside down.
  • Carol: My husband has MM and says "Prayer and a positive attitude!"
  • Lynn Marie:  Look in the mirror and say "Not today". Prayer and faith that God will take care of you.
  • Rich: My wife has MM. Diagnosed in 2013. This may not be politically correct, but I view it like terrorism. If you let it control your life, it wins. If you start living in fear of the "what ifs", it wins. If you stop living life to the fullest because of it, it wins. Don't let it win.
  • Tammy: I believe that faith first then family and friends. Secondly, A POSITIVE attitude and enjoying your life to the fullness.
  • Terrie: Prayer, family and friends just calling to see how we are doing. And the positive attitude of the staff at our dr's.
  • Liz: And praying!
  • Ronni: When I start to sink I give it to Jesus. He gives me peace. His peace enables us to endure everything.
  • Laurie:  For encouragement I write out scripture verses and the references (ex: Ps. 27:3) on my bathroom mirror so I see them every time I walk in the room. My 10-year old granddaughter decided to add to the mix "Be Strong. Ellie 20:15" ?? (The others may change but that one will always be there.) The funny thing when I look in my mirror it's plastered right across my forehead. ?

5. Educate Yourself

  • Sonia:  Researching information: Facebook forums
  • Julie: Understand all the possibilities, but hope for the best.
  • Kit: staying informed about mm but not immersed in it.
  • Barbara: Learning as much as I can about me with MM. I find that information grounds me in the real and keeps me from obsessing about any " what ifs".
  • Michelle:  Be your own advocate and research the good and bad. It's helps you feel in some sort of control being informed. 
  •  Julie: For me (and I know I have slight advantage as I've been a professional counselor all my life), sharing my Dx openly and honestly from Day One, was most helpful to me, my loved ones, and colleagues. I also spent/spend a ton of time reading about and researching myeloma... from day one. Knowledge and information is empowering for me. Additionally I started a blog in 2010 when I went for my July 2010 SCT, and that has been a wonderful way to share my journey with other myeloma patients and all those in my life that enjoy my updates. 

6. The Struggle is Real: Rest and Release

  • Sarah: Crying in the car
  • April: Glad I'm not the only crying driver out there!
  • JoAnne: I'm not sure I am handling it. I just try to get through each day and each situation with dignity and kindness. Sometimes it is very difficult but I am blessed that my husband's illness has not yet affected his positive attitude. That will be a turning point, I think.
  • Gail: tears and sleep. Learning to process my true feeling thru all the fatigue------?
  • Vicki: My advice is to ALLOW yourself to feel your emotions.It's ok to cry, get angry, feel down, etc - by giving yourself permission to "feel" these things, it's easier to move on rather than burying your emotions. 
  • Dee: Remember to take good care of urself too! And take one day @ a time...
  • Deborah: For two complete days, 48 hours, I don't answer the phone or the door when I take steroids. Friend and family are well aware. And their prayers, of course??
  • Michelle:  Cry it out when you need to. It releases a lot of emotion and anger. 

7. Find the Good

  • John: Accept our new normal. When we become adults, we're no longer teenagers. When we start a family, we're no longer single. This cancer doesn't take us away from something, it's a new path on our journey. And beyond the challenges, it comes with new blessings. Embrace what is and not what isn't.
  • Lorra: From day one I have kept a positive attitude and I do not think about the cancer. There is nothing I can do to get rid of it, just take my meds, and do what my doc says, yes we always discuss the situation. I cannot let MM live my life.
  • Janice: I am very positive and usually don't worry about MM since I know I can't control it. But, I had a short nightmare today that it was back. I have been in remission since my Dec. 2013 SCT. I am now "shaking it off" and reminding myself that worrying won't help anyway.

8. Find Emotional Support and Calm: Be With Happy People and Pets

  • Kit: Therapy, meditation, exercise, finding people who make me laugh
  • Luck: MBSR (mindfulness training)
  • Mary: Love and support from family and friends. Getting cards in the mail months later encouraging me. 
  • Stacey: I'm the General of this MM war and have a whole bunch of soldiers (family, friends etc) rooting me on and helping me stay positive
  • Nikki: My 2 dogs have got me thru some very dark days x
  • Michelle:  Do your best to keep your connection with your partner open and loving. Take things one day at a time.
  • Madeline: Several things. My husband can always make me laugh. I have elderly parents and I promised the Lord that if He lets me be around for them until they don't need me any more that I will be a good girl and count my many blessings every day. I use an anti depressant (trintellix) , medical marijuana helps my pain which helps my mood, and weekly therapy with a MSW who has experience with cancer patients. I try and stay busy and plan visits with my family, oh and in April my son is getting married to his love of 12 years. Planning that wedding with them has me smiling.
  • Lisa: Keeping a sense of humor. I suppose some people would think it's strange the way my husband and I joke about his cancer, but it breaks up thinking about the doom and gloom of having cancer. One time, after his diagnosis he was cleaning out our spice drawer and I am notorious for keeping spices way past the expiration date so he proceeded to tell me that cooking with expired spices is probably what caused the cancer. We laughed our butts off.
  • Rich: My wife. Simply sharing it with someone I love and care deeply about is a tremendous help. I know she is there for me to be a listener and an advocate for me when I am not able to.
  • Barbara: My family: husband; 2 sons & their wives; 2 grandsons ages 25 & almost 2 plus one on the way; and others. My yellow Lab. My friends. Being willing to see the beauty in the world. Chocolate!

9. Have  Myeloma Expert on Your Team

  • Judy: UAMS LITTLE ROCK ARKANSAS
  • Carol: And having excellent MM specialist(s)!

10. Get Professional Help and Access Free Services

  • Daniel: I see an oncology psychologist every month. Really helps to talk with a professional to get a different viewpoint.
  • Brenda: Isn't it wonderful that they offer those services? I have a free massage once a month, and have a nutritionist working with me to lose my "Dex" weight.
  • Liz: Counseling helped me more than anything.
  • Mary Ellen: I got involved at the cancer center. Everything is given at no charge. Yoga, facials, cooking classes, support groups. I see one of their excellent counselors as well It helps to stay busy.

11. Serve Others

  • Debi: It was and is very important to me to try and do something everyday to make a difference in someone's life. To make my survival mean something. I post inspirational quotes everyday on my FB feed and I work / teaching part time at my local high school and I co sponsor a club for students there. It is a bit of a struggle for me but it gives my life meaning.
  • Jenny: Helping other myeloma patients by sharing information that could improve their outcomes is one of the most rewarding parts of running the Myeloma Crowd. I've found great joy in service.

12. Carry On and Stay Positive

  • Anne: By living like I am not dying. I make plans and travel reservations in advance. People say what if you don't feel good and can't go. I say so I don't go, It's that simple.
  • Patti:  I think we are in denial. We tidied up our finances at first and prepared for the worst. It didn't happen so we went on with our lives but the fear is under the surface. We ignore it. I'm not sure if that is a good tactic or not but for now it is just a normal life.
  • Kathy: I totally agree. No one can relate unless you walk in the shoes or down the same road. Keep up the fight!! Take one day at a time.
  • Cheryl: I love everyone I've met in this group, but I haven't let cancer get me down. Someone has always been able to answer my questions. When the doctor diagnosed me I asked him what his game plan was. I've stayed positive, gone to work, volunteered at the animal shelter....all the things I did before the diagnosis.  You have two choices....live with it or die from it...I chose the first. No one on earth knows if they'll be on earth tomorrow. I don't dwell on the "what ifs" and I feel great.
  • Kathy: Sometimes denial! We use to travel and so we made a date for dinner or lunch around the doctor apts.
  • Brenda:  We must think positively. When my oncologist answered my question with "it is incurable" I felt my heart drop to my feet. I have been through a lot emotionally for most of my adult life and have become very strong. I felt sorry for myself for the rest of the day after receiving the news and the next morning when I woke up I vowed to fight to the bitter end and to maintain a positive attitude. I called my 2x weekly trips to The Cancer Center "slamming it" visits. I call my red scars (from the subcutaneous shots) my "slam it scars".  I believe that knowing you are doing everything for your body that you can do is part of the positive emotion of fighting disease. I evaluated my diet and cut out all alcohol and junk food. No more fast food. No more sugar. I started eating lots of fresh greens and other veggies and cut back on meat, eating it only a couple of times a week. I avoided gluten and did my best to eat non-GMO foods and organic. I also started drinking 32 oz of water each day because my oncology nurse said it helps wash toxins out of your body. I am still eating healthy and drinking all that water. I was in remission 7 months after being diagnosed in Stage III. That may have been pure luck, but I want to think that positive thinking and taking charge of what goes into my body was a big help to the Velcade and Dex treatment.
  • Janet: I for one do not think there is a special formula for how one handles a diagnosis of a terminal cancer. All I can tell you is how I did and continue to do so. The first three months was my adjustment stage, I had to take an antidepressant, not for depression but for sadness. I finally came to the realization that everyone was dying as soon as you're born. I continued to work as a Critical Care Nurse, had chemo 2x week then a stem cell transplant, followed by 2 more months of Chemo. I had to give up my profession due to my compromised immune system and grieved the loss of my profession. I continue to stay positive, involved with many organizations, an Ambassador for Patients and families, started a Support Group for Multiple Myeloma and a guest speaker in my community for awareness. Stay informed, do your research, get involved. That is my advice.
  • Kathy: I take each day one at a time. I cry, get angry, question why me, and then I go on! I pray every morning for myself and others fighting this disease. Cards in the mail, phone calls from friends, and visits from my kids and grandkids make days bearable. I stay positive and keep a smile on my face.
  • Amanda: Looking at my children and knowing when he's gone he will live thru them. He's going to miss teaching them to drive, periods, proms, college, weddings, grandkids but i know the sparkle of his eye will be in each of their souls.
  • Lisa: Pray, work, spend great times with family and friends,don't dwell on it ,fight it . Have great doctor and staff to depend on.cry when you need to and get on with it!

 
Jennifer Ahlstrom
About the Author

Jennifer Ahlstrom - Jenny A - Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

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