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:
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.
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:
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
Jennifer Ahlstrom
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can contribute to cures by joining HealthTree Cure Hub and joining clinical research. Founder and CEO of HealthTree Foundation.