A place for stories
Learn about experiences from patients and caregivers
Read about Steve’s experience as the quarterback of his mother’s caregiver team in their fight against multiple myeloma.
Read about Marilyn’s experience with multiple myeloma as a patient who embraces fierce strategies to battle this disease.
Read about Angela’s experience with multiple myeloma as a patient who adopted a positive attitude of WE GOT THIS.
Stay positive—ask for help and accept it.”
–Steve B., caregiver and Mentor
I’m a caregiver to my mom, Brenda, who was diagnosed with cancer (specifically, multiple myeloma) in 2009. Despite that, she’s still the most positive person I’ve ever known. Her upbeat attitude has helped our whole family face her diagnosis, and I’m proud to be her caregiver and to share our journey. Right at that first appointment, the doctor told us what we were in for, which was good, because I’d never heard of multiple myeloma. He said that even though it was cancer, there were treatment options available. My mother was eager to fight her cancer, so she agreed to do some more research on her own and then start treatment right away.
Other friends also joined Team Brenda. My mom was popular at her church and many of her church friends volunteered. When my mother went to get her stem cell transplant, we all helped sterilize her house. It was a big job, but we got it done, and I realized that being a caregiver means learning to both ask for and receive help. If we try to do everything ourselves, we can get worn down and not be any good to anybody. With that in mind, I added more people to Team Brenda, but only people I could count on. The combined effort of all the team players has proved to be very valuable to our success.
With a lifelong challenge like multiple myeloma, I think it’s important to stay flexible and not get too set in our ways. Mom’s still receiving treatment, but I’m happy that she’s active again. I have to remind her not to overdo it. She is still an active member of the National Speakers Association (NSA) and is working on her dissertation for her PhD. My mom knows that there is something inside her that is greater than any obstacle, and this feeds her adventurous spirit. And I’ve learned to slow down a little bit, too. Before my mother’s diagnosis, I was either working or running around all the time. But now, I take much better care of myself. I take the time to address my own health issues when they come up, and I’ll even take the time to see a movie every now and again. I never did that before, but I’ve learned that mental and emotional health can be just as important as physical health. I’m still helping my mother in any way I can, and my life has improved through a heightened perspective. When you don’t sweat the small stuff, your life improves tremendously.
If I could leave you with one thought, it would be this: Keep a positive attitude and get your team together. Even if your team has only one other person, that’s okay for a start. Just having someone go to the grocery store for you can be a big help. If you’re the only caregiver, I encourage you to find a support group. There are many groups out there willing to share and help in any way they can. You may even want to start a support group yourself. Educate yourself about what your loved one’s diagnosis means, and what treatments are available. If you have cancer, find an oncologist you’re comfortable with—one who answers your questions using terms you understand. Keep focused on your treatment plan and be ready to fight. It’s funny how nothing changes day to day, but when you look back, everything is different. Embrace the change.
Never give up, keep on fighting and keep on looking for the multiple blessings in your life!”
–Marilyn A., patient and Mentor
I am an identical twin and the mother of twin daughters; I have also been living with multiple myeloma for a while. Before I was diagnosed, I was a healthy woman working for an ophthalmologist specializing in pediatric eye problems. I was in the midst of purchasing a life insurance policy when a routine insurance exam detected an abnormally high protein in my urine. I contacted my family doctor and asked him what to do, and he advised me to wait and see if anything progressed. Since I had no other symptoms, I felt comfortable listening to his recommendation.
Approximately 1 year later, I developed severe pain in my ribs and my doctor suggested that I see a local oncologist. My sister and I did some research until we found a local hematologist/oncologist who was a myeloma specialist in our area. He was very experienced and was able to perform the biopsy with no problem. The results confirmed that yes, I did have multiple myeloma. Since I still had no idea what multiple myeloma was, and, like many other people, I’d never even heard of it until I was diagnosed; I thought it sounded like melanoma. He explained to me that it is a blood cancer affecting the plasma cells, which help to fight infections. Hearing that I had cancer and that my immune system would be compromised, I was totally devastated!
That’s when my sister stepped in and took over for me. She was also devastated, but knew that I needed someone to help me learn anything and everything that I could about this disease. I needed someone to help me figure out what to do next and where to go to get answers. After many weeks of research, she found an organization that dealt specifically with multiple myeloma and we reached out to them. They provided us with information on everything from questions to ask my doctor to finding the right specialist. We finally felt a sense of relief knowing that we were no longer alone. After seeing several multiple myeloma specialists, I decided to stay with a local doctor who seemed very knowledgeable. I wasn’t given specific orders to do one thing or another; instead, I was given several recommendations for treatment options. As I was still relatively healthy, and I was lucky enough to have an identical twin sister, it seemed like a no-brainer for me to have a bone marrow transplant with her as my donor.
My sister and I started going to a local cancer support group, but soon found that it dealt with all types of blood cancers and we wanted to focus specifically on myeloma. It was then that my sister and I and a few other myeloma patients we’d met decided to form our own small support group. We started meeting around the kitchen table, and as more people wanted to get involved, we expanded to a local cancer center. As word of our group spread through advocacy newsletters and word of mouth, we began to grow by leaps and bounds. We soon had to move to even larger quarters. Today, we’re still going strong with a mailing list of over 300 people, with one of our own members publishing a monthly newsletter, as well as having our own website. It has been wonderful to welcome so many new people and to offer them real comfort for their journey ahead. I only wish that I had been able to get the same kind of support and information when I was first diagnosed. That is why I encourage patients to seek out a support group if you haven’t already done so. Through my support group I have been able to talk to newly diagnosed patients, helping share information and giving them hope for their journey ahead.
Being a multiple myeloma patient can be challenging at times, but it’s important to keep a positive attitude as much as you can and to be as active as you can. Staying attentive and having a solid support system will help you handle bumps in the road when they come. I am not only alive and feeling well, but with the total support of my wonderful sister, I am also an organizer, a co-leader of my support group, and an enthusiastic advocate in the fight against multiple myeloma. I’ve come a long way from the days when I needed my sister to be an advocate for me and I’m proud to be an advocate for others. I discovered that I was stronger than I ever thought I was…and you can be, too. Never give up, keep on fighting, and keep on looking for the many blessings in your life!
I consider myself a lucky girl; I know there are more bridges to cross in the future, but I am prepared to cross them…because I know WE GOT THIS!”
–Angela C., patient and Mentor
When I was diagnosed, I was afraid, but I quickly learned that I didn’t have to face it alone. That’s why I adopted the slogan, “We Got This!”
Before multiple myeloma, I had a fast-paced, stressful job as a bank executive, and I rarely took time away from work. But when I did, I was very involved in my kids’ lives and activities. I was always on the go. So, feeling extremely tired seemed to make sense. Unfortunately, there was more to my fatigue than I thought. During the year I was diagnosed, I remember being sicker than ever before. Approximately a month or so before being diagnosed, I went to my doctor with a terrible burning in my chest. I felt like it had to be an ulcer. I made appointments to have an endoscopy and colonoscopy several weeks out, but while I was waiting, I began having pain in my back and abdomen, a horrible headache, and extremely low blood pressure. I went back to my doctor and was scheduled for a CT scan of my stomach. I was losing my patience and didn’t have time be sick, so I called my sister, who is an oncology nurse, to see if she could help. Thankfully, she asked me to have my blood test results sent to her office so they could review them. A doctor from her office ordered additional bloodwork, when he shared the results, he told me he was more than 95% sure I had multiple myeloma.
I had a bone marrow biopsy and a bone scan that confirmed a diagnosis of aggressive multiple myeloma and started chemo shortly after. That gave me a lot of time to rest, think, and analyze my life, particularly how work had gotten so fast-paced and stressful. How had I allowed myself to be this sick and ignore it? That’s when it hit me: I didn’t choose cancer and I certainly didn’t want it, but I was and am truly blessed; I had an opportunity to look at things differently, reprioritize, and appreciate everything more: I hugged my kids and spent more quality time with them; I told my family I love them and thanked them for all they mean to me; and I comforted and reassured everyone around me that I was still alive, and I wouldn’t give up easily!
I went online and learned all I could about multiple myeloma and started a blog to keep my family and friends informed. I’d heard so many times that attitude is a huge part of this battle, so I decided that no matter how much I hurt, I would smile and remind myself that WE Got This! I needed to keep that positive attitude as much as possible, because life quickly became regimented around blood draws, chemo cycles, medications, side effects, and doctors’ appointments. It was also filled with trying to figure things out like insurance deductibles, disability insurance, and completing various forms. All of this can be overwhelming, and my advice to you is, if the financial or emotional stress becomes too heavy to bear, reach out to professionals who can help you manage it. And don’t be ashamed to have a good cry!
I have learned through my illness that we have to be part of the medical team with our doctors and nurses. Don’t forget: It’s your team, so be a player! Always be prepared to ask questions about your treatment, new medications, side effects, and what the plan will be if something doesn’t work. My oncologist helped me to recognize that I have a “new normal” to embrace. So, I try to stay optimistic. I follow my doctors’ orders, make time for rest, take my medications, and get blood tests monthly. Also, be sure to bring someone with you during doctor visits so that they can be your second set of ears. With the amount of information I’m given at appointments, having someone there to help me is always a huge benefit!
Today, I’m filling my life with meaningful things: Spending more time with my kids and family, working with the youth at my church, and speaking with groups like you. Dealing with multiple myeloma has brought out some of my “best” weaknesses: Lack of patience, hard-headedness, being a little too independent, and a strong desire to take the bull by the horns and steer it the way I want it to go.
Multiple myeloma changed my life in a lot of negative ways, but it also made me slow down and take things day by day—to stop and reflect on what’s important and what’s insignificant. It forced me to stop and truly appreciate my life and all of my blessings. I consider myself a lucky girl; I know there are more multiple myeloma bridges to cross in the future, but I am prepared to cross them…because I know WE—and that includes all of you—GOT THIS!
What it means to join My Mentor Connections
The My Mentor Connections program helps people share their experiences with others and find support and encouragement throughout their journey. As Multiple Myeloma Mentors, these participants hope that sharing their stories will build further awareness and understanding on living well with multiple myeloma.
By partnering in the My Mentor Connections program, members experience:
- More support and encouragement in their journey
- Easy access to a portfolio of resources
- Greater knowledge about options and challenges that patients and caregivers face
SIGN UP TODAY!
FILL OUT THIS REGISTRATION FORM OR CALL 1-844-482-6818 TOLL-FREE.
You will be paired with a patient or caregiver Mentor who will:
Speak from personal experience about their multiple myeloma journey
Refer you back to your physician or other resources for additional information
The personal information you provide while registering for My Mentor Connections will only be used for the purposes of this program.
THANK YOU FOR SIGNING UP!
Welcome to My Mentor Connections, a program designed for you. You are now registered with a program that is helping patients living with multiple myeloma and their caregivers across the country.
Here’s what happens next:
Based on your answers, a Mentor Program Specialist (MPS) will set up a call between you and a Mentor whose experiences are similar to your own.
The MPS will confirm the date and time by phone or email, which ever way you prefer to be contacted.
When the date and time comes along, be ready to call the number provided by the MPS to speak with your Mentor!
In the meantime, please check your email for tips on how to prepare for your call or correspondence.