What’s it like to have multiple myeloma? “Having myeloma is like going to the doctor monthly with an envelope in your hand. After your labs, you open that envelope and it has an equal chance of having a red or green card in it. The green card means your labs are clear – you're still myeloma free. The red card means your labs are off – your numbers say that you now need treatment,” says Cynthia Chmielewski, a myeloma patient and advocate (@myelomateacher). Cynthia knows that the only certainty about having myeloma is that there will be uncertainty. She was diagnosed with myeloma in July 2008 after suffering for two years with misdiagnosed and severe back pain. She taught school for 28 years before retiring in 2009 after her stem cell transplant. The 3 hour infusion she needed several times a week with a clinic that closed at 4 o’clock made it impossible to keep up a regular teaching schedule. When her transplant failed, she turned to new combinations that have steadily kept her myeloma at bay. She is now in very good partial remission and is on a maintenance regimen. Cindy is still a teacher, but now spends here days teaching myeloma patients what they can do to get better care. She is well knows as the Myeloma Teacher on Twitter @myelomateacher and she shares relevant articles about myeloma on her Twitter feed and in her online newspaper. Here are her tips for dealing with the uncertainty of multiple myeloma testing and living well with the disease:
- Waiting for results is stressful. I signed up for online access to my lab results through the Labcorp Beacon Patient Portal. My results are delivered directly to my email when available. This way I don't need to constantly check my patient portal to see if they arrived. I also have my labs drawn several days in advance of my consultation. I know what my lab results are prior to my appointment and therefore can plan accordingly
- I distract myself by doing activities I enjoy while waiting for my test results. I keep as physically active as possible this way my mind doesn't go down the "what if" path. I love working in my gardens. Also physical activity releases endorphins and helps reduce stress.
- I have a plan. I prepare for the worst case scenario by mentally reviewing a list of ALL the different choices I can pursue if my results indicate that my myeloma is progressing. (Knowledge is power. Empower yourself by learning about your myeloma and treatment options available.)
- I hang out with my "fun friends" and pamper myself. I've been known to treat myself to a pedicure, day at the salon or a nice long shower!
Cindy approaches her disease with hope that is backed up by action. She is one of the most educated myeloma patients around and finds great joy in proactively planning for herself and helping others.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).