From Passive By-Stander to Empowered Partner (Part 1)
I’ve told this story before, but I believe it is worth repeating. Prior to my multiple myeloma diagnosis in 2008 I was a passive by-stander on my health care team. I grew up in the age of paternalistic medicine. I possessed the “doctor knows best” mentality and blindly followed my doctor’s orders without asking any questions. It never crossed my mind to educate myself about my illnesses so I could be prepared to engage in informed discussions with my physicians during scheduled visits. Fortunately, I was a fairly healthy individual, so my lack of involvement didn’t have major consequences.
Excruciating pain sets in
Things changed during the summer of 2006 when I began feeling extreme fatigue and nagging back pain. By the fall of that same year, there were days that the pain in my lower back was so excruciating that I could not physically get out of bed. I decided to make an appointment with an orthopedic doctor to determine what was causing this agony. After a brief exam, my orthopedic doctor diagnosed me with degenerative disc disease. I was sent home with prescriptions for pain medication and physical therapy.
Unfortunately, my back pain did not subside. It grew worse. During the next two years, I returned to the same physician at least a dozen more times. At each return visit, in addition to physical manipulations, I was prescribed varying combinations of pain medications, anti-inflammatories and muscle relaxers along with more sessions of physical therapy.
Degenerative disc disease or something else?
There was something that troubled me about my diagnosis. My doctor never ordered any imaging of my back. From the beginning, my instincts told me that I should be asking how my doctor arrived at my diagnosis of degenerative disc disease, could anything else be causing my back pain beside degenerative disc disease and could an x-ray or MRI help unravel what was causing my distress. But I didn’t trust my instincts. I thought I would offend my doctor by asking those questions, so I remained silent. Doctors knew best.
Being a fifth-grade math and science teacher, I was on my feet most of the day. I managed to get through the week by consuming enormous doses of over the counter pain relievers in addition to the medications I was prescribed. One day my colleagues found me sleeping at my desk after I missed the scheduled faculty meeting. They insisted I return to the doctor. I reluctantly did.
On this return visit, two years after my initial consult, I was surprised but happy that my doctor decided to take an x-ray of my back. The x-ray revealed I had several compression fractures in lumbar spine. I was scheduled for outpatient surgery to repair these fractures. I was relieved because I thought we finally had an answer to what was causing all my pain.
Discovering the real diagnosis
Prior to my surgery, I needed bloodwork. My labs came back extremely abnormal. My surgery was cancelled, and I was referred to a hematologist.
My hematologist knew immediately that I had multiple myeloma after reviewing my blood work, taking a patient history, and listening to my symptoms. He order a few additional blood tests and a performed a bone marrow biopsy. The test results confirmed that I indeed had multiple myeloma and I didn’t have degenerative disc disease after all. We finally had an answer to what was causing all my fatigue and pain. I entered into Cancerland.
Read Part 2 of Cindy's story here.
What type of blood cancer are you or your loved one diagnosed with?