Carrie: Multiple Myeloma Warrior

Last year, probably starting around September; but who knows, it could have been sooner, I started feeling very tired, weak, and short of breath. The shortness of breath stumped me because I considered myself in excellent physical shape. I also had neuropathy in my feet and lower legs, right worse than left. It was becoming harder and harder to complete my daily three mile walks due to fatigue. I was being treated for high total cholesterol and high LDL. My doctor changed my cholesterol medication from atorvastatin to rosuvastin in case the statin was causing the neuropathy. I then went to my cardiologist because I wasn’t getting any relief. Changing cholesterol medication didn’t change the neuropathy. I was also very forgetful. He started me on Repatha. We discussed how awful I felt and how my cholesterol numbers still weren’t controlled. The Repatha fixed my cholesterol but I still felt crappy. I asked my cardiologist if he thought I had a coronary blockage that would explain how I felt. He said no, he didn’t think so. I toyed with asking him to do a cardiac cath, but decided against it. He referred me to a neurologist for the neuropathy. I went to the neurologist. He ordered a spinal X-ray, nerve conduction studies, and blood work. I told him I was vegetarian and asked that he order extra blood work to make sure I was getting proper nutrition because I’m vegetarian. I went back to my cardiologist first for a follow up visit. He looked at the labs and said they were ok. I questioned the abnormal protein. He said it wasn’t a problem. Soon after I had a follow up visit with the neurologist. Spinal X-ray was ok. The nerve conduction study showed neuropathy not caused by the spine. I guess that should have been my first hint. He saw the abnormal protein and ordered additional bloodwork. On December 17, 2018, I got a call from the neurologist’s nurse telling me I had multiple myeloma. I was to have blood work at three month intervals and see the doctor again on June 17, 2019. I flipped out. I was angry that he didn’t call me with this news and that he wasn’t going to see me for six more months. I called back and requested a consult with a hematologist oncologist. Well, I really didn’t know what multiple myeloma was. It’s a chronic cancer of the bone marrow. We like to refer to it as “chronic” rather than “incurable”. I did research, a lot of research. I looked at all my other lab results. The neurologist was correct in the three month repeat labs and seeing him in six months. I canceled the consult. I joined two Myeloma groups. It’s helpful to see what others are experiencing. It’s also helpful to give and receive emotional as well as educational support. We’re Multiple Myeloma Warriors. So, today is March 9, 2019. I have repeat labs ordered for March 18, 2019. I do a three mile walking video six days a week. Yesterday, I decided to go back to walking outdoors on some days. It’s Florida and so the weather is beautiful. I take a variety of supplements. I take methylphenidate for depression and fatigue. Some days are better than others. I am a firm believer that stress, depression, and negativity adversely affect health and healing, so I pray daily for perseverance, persistence, and positivity. The prayers work. I also believe that only in maintaining a positive outlook will I receive messages from my mother who passed away almost two years ago. Call me crazy, but there are messages. Ok. That’s a start on telling my story. That’s enough for today. Stay strong.