Saturday, May 3, 2014

The Road to Myeloma Diagnosis (as seen on www.myelomacrowd.org)

Symptoms and signs. The months prior to myeloma diagnosis. From www.myelomacrowd.org

The Road to My Myeloma Diagnosis
by Lizzy Smith

I’m often asked what my myeloma symptoms were. How did I know I needed to go to a doctor? How was it discovered? I know in everyone’s minds it boils down to this: If I have cancer, what are the early warning signs?

For me, I often say that discovering myeloma was accidental and random and that I had no real symptoms. But looking back on the months leading up to diagnosis, that isn’t true.

The first signs of trouble were in late May 2012, some eight months before diagnosis. As we did every year, my then-husband and I flew from San Diego to Utah to run in the Ogden Marathon. I always ran the marathon as part of a team and my official leg was five miles. Because I was the second to last leg, I always ran the additional three miles, too, totaling just over eight miles to the finish line. The night before the race, I took a home pregnancy test and found out that I was pregnant at the age of 43. It was my second pregnancy of the year—in January I had discovered I was pregnant, too, and had miscarried a few months later. I started my portion of the race and almost immediately just simply couldn’t run. It is like my body hit a wall. Less than one mile into it, I stopped running, threw up and walked the rest of the way. That was odd—I could run at least five miles with no training at all and now I couldn’t run just one mile? I chalked it up to the pregnancy.

Several weeks later, I realized that I either cracked a rib or at least had severe rib pain. I looked up pregnancy symptoms and found that many other women had sore ribs too. That’s what it was. I thought nothing more of it. A month later, I miscarried again but I had another cracked or sore rib, this time on the other side of my ribcage. Once that healed, I caught a cold and seemed to crack another rib from coughing. In December, just weeks prior to diagnosis, my husband grabbed me around the waist and broke a rib. That was weird.

I also tried to start up with running again in the summer prior to diagnosis and I just couldn’t do it. I could walk ten miles but I couldn’t run more than a mile. I thought I was just out of shape and unmotivated so instead of running, I simply enjoyed walking. Looking back, I know that I was severely anemic thanks to the myeloma.

About four months prior to diagnosis, I started experiencing severe night sweats. I would wake up drenched with the sheets soaking wet. I thought it was stress from a terrible marriage. I would have nightmares and wake up with a pounding heart, terrorized, and feeling like I had just stepped out of a shower.

I also started becoming extremely forgetful. I wouldn’t remember my drive home. I would be in meetings that I wouldn’t remember being in at all. Work deliverables went ignored because I simply didn’t remember them at all. That wasn’t like me. I thought it was all stress related, though.
And, finally, in early December, just a month prior to diagnosis, I went on a business trip to New Orleans for five days. When I got home, I was exhausted and burned out in a way that I can’t adequately describe. But, I thought, I should be exhausted. I had worked insane hours in New Orleans. I had come home to a disaster — filth, laundry, dogs who needed care, children whose homework had been ignored, and a husband whose life was spiraling out of control from the effects of alcoholism.

I finally went to my doctor and told him that I was exhausted and wanted blood work done. I really didn’t think I had anything severe going on and, really, why I insisted on blood work is quite odd. Was it my guardian angel or God directing me to get help NOW? I think it was. I have felt that direct hand of God throughout my diagnosis and fight to get well. This was the start of it. My doctor thought I was being overly dramatic. “I don’t think there’s anything wrong. I think you’re having severe marital problems but we can do some blood work.” And so on my way out of the building, I stopped by the lab for a CBC. And that started my road towards true diagnosis. While my doctor had terrible bedside manners, I will forever be grateful that as soon as he saw the results, he realized that I needed follow-up testing. I was dangerously anemic but my iron levels were fine. That wasn’t normal. He immediately ordered more blood work. And then a body scan and a 24-hour collection kit and bone marrow biopsy. By the time I was officially diagnosed, I was a stage III with over 90 percent myeloma cells in my bone marrow, though a clean body scan. Somehow the myeloma cells hadn’t yet found their way into my bones.

I was always watchful for signs of cancer and I didn’t think I had any of them typical symptoms. I did not have unexplained weight loss. I didn’t have lumps or bones that broke easily (although yes I did – my fractured ribs were broken bones). I didn’t “feel” differently. Except yes I did. I just simply thought it was symptoms of pregnancy or stress. But yet the symptoms I did experience seemed so ordinary and so easily explained away. I believe that my pregnancies spurred unnatural cell growth. I believe that my myeloma started growing quickly right around the time I became pregnant the second time—and I believe the myeloma grew fast and out of control. For me, I believe that my disease went from nothing to everything in just months. I will never know for sure but in my gut, I just know it’s true.

I hear from so many other myeloma warriors about visiting their general doctor and waiting months if not years before they are diagnosed. Few doctors know the signs or what to look for. Education and awareness is key and it will make a difference in prognosis.

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