I attended the Wellness House Multiple Myeloma support group beginning in 2006 after my husband’s diagnosis. I had never heard of MM, and it seemed unbelievable that there was a support group right in my neighborhood – we lived in Oak Brook. Felt like divine intervention. My husband, Frank, had been in ill health for all of 2006. He had gone repeatedly to his doctor, who ran multiple blood tests and found nothing amiss. Frank had pneumonia twice, lost over 20 pounds, and was in constant pain. Something was very wrong. A friend recommended an MRI – not the doctor, mind you, but a friend in the healthcare field. The MRI showed that Frank was “full of cancer” – his bones looked like Swiss cheese. Knowing now what I know about this disease, all the symptoms suggested multiple myeloma. However, Frank was a non-secretor, which means that 100 blood tests would not have shown a problem. The disease does not show up in the blood, which makes diagnosing and treating it more difficult. A physician needed to consider all the symptoms to see a clear picture. Our first doctor did not do this.
As soon as we saw a physician at Loyola, and he heard the symptoms, he suspected it was Multiple Myeloma. He needed tests to confirm it, but he was relatively positive. After several more tests, the diagnosis was indeed multiple myeloma.
As many people do, I was searching online for answers and information about the disease. That’s when I found the Wellness House support group.
Frank was far too sick to go to a meeting, so a good friend attended with me. The meeting was the best thing I could have done. The people attending – families and patients – had so much knowledge and so much compassion. They shared anecdotes, the latest research, the “best” doctors (our new doctor was one of them mentioned, which was incredibly reassuring), and the group told me about an upcoming seminar about the disease to be held less than 2 miles from my home in Oak Brook – again, divine intervention. I attended the seminar and came away armed with knowledge and more hope than I had felt in months.
After Frank was stabilized, he began attending the Wellness House group with me. He was able to meet others in his situation, and the “long-termers” gave him great hope for a future. I finally bowed out of the group, but Frank continued to attend intermittently. He wanted to “give back” to those who were in the beginning stages of the fight. Frank went through two stem cell transplants – we learned so much in the group about all the different therapies, procedures, drugs, etc. All that knowledge helped him make his choices about what treatment he wanted to receive. Frank chose the most aggressive treatment, which potentially promised the best results. But with greater risk.
Frank lived a good, full life for ten years after his diagnosis. We always believed that finding the Multiple Myeloma group at Wellness House early on helped us make good decisions, and we were armed with the knowledge to fight the cancer as best we could. I would strongly encourage someone with a new diagnosis to attend the Wellness House, where you can learn about cancer treatments, programs at various facilities, and trials available. But, far more than just knowledge, we found a community that supported us through some of our darkest days and offered hope by observing those who had gone before us. Having people who understand your journey – people who have lived your journey – is very uplifting.
The Wellness House is a very special place for which I was, and am, very grateful. – Karen
