I meet people on a daily basis that have questions about my disease. Some of them are afflicted by myeloma themselves, and some of them are just curious. I will talk to anyone about this. I believe that there is someone out there that will hear my story and remember it, when sometime in the future, they start to notice changes in their own body. I wish I had known about myeloma. I wish 4 years ago when I started noticing changes I could have put my own puzzle pieces together to not only see the big picture, but the RIGHT picture.
The first question I’m asked by every myeloma patient or caregiver I meet is, “How were you diagnosed?” or “What were your first symptoms?” This is basically the same question. You see, for someone like me myeloma is SO hard to figure out. And sadly, this waiting time can mean life or death. Life or death. This disease can take people in a matter of months. Early diagnosis saves peoples lives. But when you are a 35 year old white female nutrition coach, myeloma is the LAST thing a doctor will look for. Yet, being here at the Myeloma Institute for Research and Therapy, I’ve met so many of us that don’t fit the myeloma mold AT ALL. We are so fortunate that something happened to alert our doctors. Yes, I’m incredibly fortunate that I broke two ribs within a month of each other, then a few weeks later broke my sternum. If that had not happened, I probably would not be diagnosed today.
However, those bones would not have broke had the correct tests been run. I want everyone to know that I do not blame my doctors at all. Again, women my age don’t get myeloma, so it wasn’t even on the radar. My message to you is LISTEN TO YOUR BODY. If your gut tells you that the professionals are wrong then keep insisting for more tests. Doctors will tell you to keep off the internet, that it can make you a hypochondriac. This is your life. Use Google.
4 years ago, after the birth of my son, I started having pain in my joints, muscles and skin. I went to a wonderful Internist who sent me to a Rheumatologist. My Rheumatologist scheduled so many tests. In the beginning he was sure I had an autoimmune disorder like Lupus. My blood tests painted a picture of a perfectly healthy person except for a high level of calcium in my blood and a very high inflammation marker. I spent months with this doctor trying to figure it out when he finally diagnosed me with what I thought was a bogus disease. I just KNEW he was wrong. I went back to my Internist who then sent me to another Rheumatologist. I was with her for several years. During that time she diagnosed me with another disease that sounded like it could be right, but my gut was still telling me there’s something not right. I was still plagued with pain.
Later, I realized that what I felt wasn’t your typical autoimmune or muscle pain. What I was feeling was bone pain. It was all over my body, but I could point to a spot and say, “It’s right here. If you touch this spot on my hip, there’s pain right there.” I had spots like that everywhere. On my scalp, my hips, my shoulder, my clavicle, my spine, etc. Full body pain, to a doctor, says something like fibromyalgia. Unfortunately, those ‘spots’ were actually lesions on my bone. Lesions that DO NOT show up on XRay or MRI.
I eventually stopped complaining. I feared my doctor probably thought I was making stuff up, and I even got to the point where I suspected she thought I was drug seeking. But the pain didn’t go away. And I knew something was very very wrong.
Who knew you could be so very sick and look like the picture of health? When my ribs broke it took 3 different sets of XRays to show the break. Had I not kept insisting that the pain was severe, my doctor would have stopped at one XRay. When my sternum broke, it didn’t show up on XRay either. Again, I kept insisting something was wrong. So wrong that I finally went to the ER and demanded a CT of my sternum. Finally, after 4 years of frustration, we had a glaring picture of what was happening in my body.
I will never forget the PA coming into the room with a picture in her hand and a very concerned look on her face. She sat down on the bed and said, “Your sternum is fractured. Unfortunately, the fractures are being caused by a tumor in your chest.” Dumbstruck. I asked her what that meant, was she telling me I had bone cancer? She told me that for my age range, and the fact that I’m female, it’s probably breast cancer. Who would have thought that I would be more correct? I knew it was serious when she said, “I’ve already called your doctor to come talk with you. He’s leaving his son’s basketball game.” I told her not to worry about it, that I needed to go home and sort things out.
The point of this is I knew for FOUR years that something was happening to my body. I was never happy with what my doctors had to say. I have had so many tests over the last four years, but none of them were the right kinds of test. So, listen to your body. If you are not happy with what the doctor says, go to someone else. Use the internet. Everything I needed to know was at my fingertips. Do not feel like you are being a burden to your doctor. Do not feel guilty for asking for medication that you need. Don’t feel bad about rocking the boat. This is your life, and people need you. If you ignore it, it will NOT go away.
“Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go.” Joshua 1:9