Kay Cromie, a bookkeeper and office manager from Burlington, Vermont, led a relatively normal and healthy life, until she was diagnosed with multiple myeloma on November 1, 2003.

Cromie was never prone to getting sick, and she worked out regularly at the gym to stay in shape. However, after turning 50, she noticed that she was getting tired during her workouts and could no longer lift weights with as much ease as before, prompting her to see a doctor.

“They ran some blood tests. All my numbers were dangerously low,” said Cromie. So her doctor referred her to a local hematologist/oncologist, who ran more blood tests and diagnosed her with stage 2A myeloma. “I was kind of blown away at that. I had just turned 50 that year – it’s supposed to be the best time of your life!”

Like so many other myeloma patients, Cromie had never heard of multiple myeloma before her diagnosis. “I had never heard of it. My husband and children had never heard of it. The only person in my whole family [who had heard of it] was my sister, and she had heard of it because she was a nurse. But she didn’t really know anything about it.”

Luckily, a family friend was able to put Cromie in touch with someone with multiple myeloma. “[This] is the biggest asset you could ask for: talking to somebody else who has this disease,” said Cromie.

“He gave me some helpful advice,” she said of her new-found friend. “To be honest, it was the most helpful advice I ever got: Do not read the textbooks. Do not look at statistics about what they say the survival rate is. All it is going to do is upset you. You’re in this for the fight, and you have to save your energy for the other stuff.”

Cromie took this advice seriously. Initially, she left the reading to her sister. Instead, she asked her oncologist what to watch for to know if her treatment was working, and she tracked her labs weekly. She vowed to stay as positive as possible and to keep a sense of normalcy in her life by continuing to work.

“I didn’t want to be sitting at home boo-hoo-ing. I wanted to keep busy and keep my mind active,” she said. “If you have a positive outlook and a strong mind, there are a lot of miracles.”

Cromie achieved remission after just three months of chemo, so she received a stem cell transplant in April 2004, which kept her in remission for 2 years. Once she got through her transplant, she was able to devote time and energy to reading more about multiple myeloma and treatment options, but she still avoided the out-of-date statistics.

“I needed to be my own advocate and not have the attitude that my doctor will tell me what I need to know and my doctor knows best,” said Cromie. “When my numbers started to creep up, I knew enough about the treatments available for relapse, so I was able to carry on a conversation with my doctor.”

At relapse, Cromie began taking thalidomide (Thalomid) and later added dexamethasone (Decadron). Recently, after thalidomide started causing too much numbness in her feet and hands, known as peripheral neuropathy, Cromie researched other treatment options, and she and her physician made a joint decision to switch to Revlimid (lenalidomide).

Despite responding fairly well to treatment, Cromie has struggled from various negative treatment side effects, such as “crashes” from coming off dexamethasone and peripheral neuropathy as a result of the thalidomide. She has also struggled emotionally, feeling disconnected from her family after her diagnosis. “I felt like everybody else was going on with their lives and making plans for the future. But I was just stuck in a holding pattern.”

However, throughout her myeloma journey, Cromie has been inspired by a friend who also had myeloma. He fought a tough battle with myeloma for more than four years. “When I think sometimes that I can’t do this or I don’t feel good, I stop and I think of him. He has been my biggest inspiration.”

Cromie advises and encourages myeloma patients to reach out to fellow myeloma patients. “Try to find another person who has the same disease who is willing to talk to you,” she said. “You need to talk to somebody who can say ‘Yes, I know what you’re going through. I know how you feel.’ You only get that kind of support from another survivor.”

In order to allow herself and others to open-up about multiple myeloma in a public forum, Cromie created a myeloma support group called the “M-Spikes” that meets on the third Tuesday of every month in Burlington, Vermont. They all meet at the Hope Lodge, a lodging center for patients who go for treatment at the Fletcher Allen Hematology/Oncology Clinic.

“I wanted to be able to talk to other myeloma survivors. I wanted to be able to help them through it, and I wanted the support you get from other survivors as well.”

As of recently, the M-spikes have about 25 active members, including not only survivors but also family members of past and present myeloma patients. The group offers equal support for both survivors and their families. “We do ‘breakout sessions,’ where the caregivers go in a separate room and the survivors go in a separate room and talk,” explained Cromie. “You don’t want to say all your fears in front of your caregiver, and the caregivers want to protect their survivors.”

Starting the group was not a very difficult process because Cromie had the aid of a registered nurse at Fletcher Allen, who helped secure a place for the meetings and publicized the group. Cromie also contacted the International Myeloma Foundation, which sent out bulletins to interested patients in the surrounding areas – something that she suggests patients look into if they would like to join or start a support group of their own.

“I was scared out of my mind,” Cromie confessed. “I never did anything like this. I used to be afraid to talk in front of people.” But she was greeted with warm reception and soon realized that leading the group was not difficult to do. “You speak from experience, and you speak from the heart. You don’t have to study what to say.”

Leading a support group can also be time consuming and challenging. Some support groups face challenges to find speakers, often depending on the group’s location. “Don’t get frustrated though, it is very rewarding. Sometimes you wonder if you want to keep doing this, but believe me, you do. I do it as much for me as I do for them. It’s very rewarding,” Cromie said.