I’m Mary Sandberg of Sturtevant, diagnosed in 2001 at age 42 following a sinus infection. After two rounds of antibiotics, I wound up in the emergency room, weak and dehydrated, unable to eat or drink. I was given 3 units of blood that first night, and the next night, Dr. Myong told me I had stage 3 Multiple Myeloma.
Funny story about Dr. Myong – he was my dad’s doctor, and when he walked in, I just kept wondering why he was there? I only met him once! But my husband and kids knew exactly why he was there.
Like many of you, we never heard of Myeloma. My husband started asking questions, like is there a cure? Dr. Myong said it isn’t curable, but it is treatable. He gave me options and recommended aggressive treatment hoping for 3 or more years remission. That number is higher today thanks to new treatments.
My family was devastated, especially so soon after losing dad to Leukemia the year before. I was actually relieved they finally knew what was wrong and could treat it. He said remission could last several years, and I decided mine would!
I had VAD (Vincristine, Adriamycin, Dexamethosone) treatment at All Saints in Racine including everyone’s favorite, Dex! I was also on Aredia due to boney lesions. My counts looked great after treatment, and I headed to Froedtert for stem cell transplant where Dr. Vesole managed my care with a unique blend of knowledge and humor.
A clinical trial had patients transplant with their own cells and then with the cells of a matched donor sibling in hopes that the tandem transplants could mean a cure. It was exciting as my seven brothers and sisters were tested, but a HUGE disappointment when none of them matched. I went ahead with the auto transplant and hoped for the best.
There were unpleasant side effects like nausea, diarrhea, thrush, and neuropathy, and I needed a second bag of my cells to boost the transplant. Although I was taking what seemed like a million different antibiotics, I still had a severe bladder infection, pneumonia, shingles and bronchitis during the post-transplant months.
My sister Nancy and her husband are nurses and were such a blessing. Everyone should have nurses in the family! My kids were teens. My youngest, Holly, learned to care for my port and took care of me when I was sick. She’s now a nurse! Jamie and Bobby were in high school where they tried to keep the news private, but Pastor said a prayer for me in religion class and it was out. It didn’t take them long to learn to play the “cancer card” to get out of things.
Today, more than 12 years later, I’m still in remission! Many people share in my success:
• My family supported me all the way, chauffeured me to appointments, sat with me for hours on end, got prescriptions filled and saw things I’m sure they didn’t want to see.
• Dr. Myong and Dr. Vesole gave us the information and recommendations we needed to make treatment choices.
• The doctors, nurses and staff at both facilities took excellent care of me.
• Hundreds of prayers were going up on my behalf every day – the power of prayer is amazing!
• My co-workers sent cards month after month. I was truly blessed to have such a huge support system.
My initial goal was remission. Then, to stay in remission long enough to see my kids graduate, and maybe even have grandchildren one day. Dr. Vesole suggested I take Dex as maintenance therapy. I did it grudgingly for almost two years, but I was not a nice person on Dex, and when they started calling me Mean Mary Jeanne, I knew it was time to quit. I was also on Zometa for those two years to strengthen my bones. Much as I hated the Dex, it sure seemed to work. I’m still in remission, saw my kids graduate, and now have four beautiful grandchilfren!
At the Racine support group my new friends and I have learned a lot from each other. It’s a fun group of people; you’d never know we were there for something so serious. At support group, you’re surrounded by people going through the same thing. They have the same questions, the same types of treatment choices, and the same fears. And yet they’re chatting, laughing and eating Blanca’s cookies and you know you’re not alone.
These days I’m down to annual checkups with Dr. Engel at All Saints. The only lasting side effect is occasional neuropathy when I’m on my feet too long. My advice for new patients is to get as much information as you can to make informed decisions. Ask questions. Get printouts of your lab results and learn which numbers to look at. Knowledge is power! Find support, someone to help you and be your second set of ears. And good hygiene is important too, for yourself and everyone close to you, so that once you GET healthy, you STAY healthy. And above all, don’t give up, there’s hope for all of us!