I’m Yvonne and I was diagnosed with multiple myeloma on August 25, 2008. My husband and I are retired, so we’re involved with a lot of volunteer organizations. We’re busy with activities at home. We like entertaining, traveling, gardening, and cooking. Outside of illness, we try to expand our interests in different areas. We watch plays and visit museums. We live our everyday lives. It’s about living with the disease and not succumbing to it.
One symptom that stood out was the pain in my hip. We went to a family reunion and were flying back from Delaware. When I stepped down from the shuttle, this pain exploded. My family got a wheelchair for me. That week, I was in the doctor’s office and the process of getting the diagnosis began.
It has been 17 years. My daughter was starting college and I was determined to see her graduate. I have since seen her graduate four times. My family needed me and I needed them. I was determined not to have a defeatist attitude. I wasn’t woeful at the beginning. I never was. I needed to understand what I had and how to navigate this.
They were encouraging and supportive with every treatment. I learned that through illness, you build some resilience. You have to build resilience. I had things to look forward to. I had life to look forward to.
Even though the diagnosis was bleak initially, there have been advances in therapies and I continued to be positive about it. As such, I’ve continued to be involved. I went back to school and did all the things that you do when you’re not thinking about what’s going to happen. I never thought about whether the end was near.
I didn’t share my story with too many people. I was working for an airline at the time. They knew that I was ill. I would go for my treatments and go back to work. I kept one foot in front of the other and went about the business of living and not thinking about the alternative.
I’m a patient at Winship Cancer Institute of Emory University and they provided quite a bit of material for me and my family to learn about the disease. We also researched on our own. I became involved with The Leukemia & Lymphoma Society now Blood Cancer United. They have a division called Myeloma Link.
My involvement with Myeloma Link took me into the community as a community volunteer at different events. They were in churches, in sorority and fraternity meetings, explaining what myeloma was and how you should continue to take care of your health. I became involved with another organization as well.
I took the resources that were presented to me and continued to learn about the new therapies. I spoke with my oncology team as well, who helped me through this process.
Materials were available to patients at Emory. I remember picking up a pamphlet. My initial involvement didn’t come until 2018 to 2019, but I had the material and I continued to research and read.
I decided after my stem cell transplant that I needed to become a little bit more engaged with my health as well as the community. I went to a conference, spoke with one of the representatives about volunteering, and the rest is history. I went through some training and shadowed a couple of volunteers.
I’ve only had two oncologists. My first doctor retired. He was slated to introduce one of his patients to CAR T-cell therapy. He had discussed this treatment with my family years prior. It was still in the developing stages then.
During a consultation visit, he talked to my husband and me about this new therapy and we agreed to it. We scheduled it after one of my graduations. I pushed it back a little bit because I wanted to walk across the stage, which I did.
I was in the hospital for about a week. I was fine for about two to three years and then I had to go back into treatment. It was explained to me that this treatment is the latest and greatest. I felt fine and still do. I’m back in therapy now getting a different treatment, but I’m nowhere near as ill as I was.
The only anxiety that I experienced throughout my experience was getting the stem cell transplant. I was receiving three different drugs twice a week for six months. In week 6 or 7, I went to the hospital to get the stem cell transplant. I reacted positively to the treatment initially. I distinctly remember that my stem cells were extracted on my birthday in 2008.
After all the paperwork and the discussions about how this was going to play out, I was downright scared of this treatment. It was explained that I was going to the hospital and would get a massive dose of chemotherapy. I remember asking my oncologist what this would do. He looked at my blood work and said, “It will get you to where you are now,” where the count was zero and the myeloma count wasn’t showing up. I said, “I don’t want it.”
They froze the cells, but I didn’t receive my stem cell transplant until 10 years later because I reacted so positively to the treatments that were being administered to me. I was happy about that, but that was the only time that I was scared about receiving some form of treatment.
I earned my doctorate before my second stem cell transplant.
It was fulfilling for me to earn my doctorate. It was something that I challenged myself with. At the end of the road, I was going to walk across the stage. I was going to go back to treatment at the same time I was going to graduate. I said, “This is something I want to do. Is that possible?” They said absolutely, so they rescheduled all the preliminary work for about three weeks. I was able to graduate and then go back to the hospital.
I wanted to do that also because when I finished my master’s degree, I was in the hospital. I was going to miss my last two classes. I was in my second-to-last class and I had to go to the hospital. My professor gave me a grade because I had done the work.
She was so instrumental in my graduating with my master’s degree. She came to my house and tutored me for my last class, so I’d catch up. I’ve had a support system from the least likely of people, which gave me the drive to survive and say that I could do this.
I graduated with honors in my doctoral degree, and I was proud of myself. My family was proud of me. That speaks to being determined to do your best and not succumbing to the myeloma. Just because I don’t feel well doesn’t mean I’m not going to do this or that. That’s never been how I am. I wanted to prove to myself that, despite all the different moving parts, I can still get this done. And I did.
You move past pettiness. When you’re diagnosed with cancer, you look at the bigger picture and what’s important. You look at what life is about. Sure, there’ll be ups and downs, heartaches, and all the things that one would experience when you’re not afflicted with a disease, but you learn to appreciate the beauty of small things.
I’ve learned to discover what else I can do, how I can help, and how I can give back. When I was at different events with Blood Cancer United and the public would come up to the table, I was the example of how you can continue to move through the disease.
I was being asked questions, so I shared, but I didn’t go in depth. I let them know that I’m a myeloma patient and have been for X number of years. You can move through it. Not necessarily past it, but you can move through it with a sense of pride. I’m a survivor and I will continue to keep on surviving for as long as I can.
Remain positive. Be your own advocate. Understand what you’re going through. Ask the tough questions, even if you don’t want to hear the answers. Learn what may be available to you.
Positivity is key. You don’t want to come into this journey with a defeatist attitude. You need to keep your chin up. Strive for something. Appreciate life and its beauty. Love your family. Tell everybody you love that you love them. Live your life.
Yvonne
multiple myeloma (MM)
