First Symptoms

Andreia, I’m delighted to be offered this opportunity, and hope other warriors may find my experiences and attitude useful in forging their way forward through uncertainty. Increasing awareness and identifying early symptoms can save lives.

My journey to diagnosis was a long and tedious one. In 2015 I noticed a couple of areas on my legs had developed darker patches. They were about 2” in diameter, and barely noticeable. A month or two later some fatty deposits appeared around my eyes, a condition called Xanthelasmata. Xanthelasmas are deposits of excess cholesterol.

I couldn’t understand this at all. I was fit, hadn’t eaten processed foods in 15 years, and had a healthful diet. I visited my Primary Care Physician, and after a series of tests he confirmed I had hypercholesterolemia. The rest of my blood-work was perfect. This explained the fatty deposits, but not the cause of a breakdown in my metabolism. He had no answer for the dark patches on my skin. “Part of getting old’, he said. I was beginning to feel exhausted around this time too.

My morning hikes tend to be around 3-4 miles on moderate to advanced trails, and my calves began aching after about a mile into my trek, which was unusual. I didn’t realize this was bone pain at the time.

My mother had died from mesothelioma, and I randomly decided to visit her oncologist to see if he had any answers. Sure enough he detected MGUS, a precursor to Multiple Myeloma, a terminal blood cancer caused by a genetic defect that breaks down bone.

I was 57 at the time, and was told that MM may or may not develop, and it was impossible to determine the outcome. This terrified me. The MGUS diagnosis sent me into a spin for a few months, but it did explain the symptoms I was experiencing.

The uncertainty of not knowing what was wrong with me had been replaced by the uncertainty of the MGUS progression. There was no question I’d reached a pivotal point in my life. Managing my mental health was a challenge, and still is at times. Connecting with nature, daily meditations, my photography and guitar playing all contributed to keeping a level head and embracing acceptance. Then there’s my 14 year old dog Rupert. He brings joy to everyone, which pleases me, and we have a beautiful relationship.