Like many who get diagnosed with multiple myeloma (MM), it comes out of nowhere. For me, it was mysterious aches and pains that crept up quickly. An alert doctor ordered tests, and eventually, MGUS, the precursor of MM, was first diagnosed. Within a month, MM was confirmed. MM is a blood/bone cancer that can affect the entire body.
For the next six months, I was involved in many tests, along with drug treatments including chemo. I had a stem cell transplant and have generally had a complete response.
MM is incurable (at this time) but very treatable. Learning how to handle the concept of this rather unique combination of good and bad news is a lesson in optimism. Depression is as real as the bone pains and fatigue that accompany MM.
I am a musician, educator, and composer. Nearly everything I do mentally and physically has been affected by MM. Slowly, I have been able to continue to be creative throughout this experience though. I continue to create music and have even managed to write a song about my experience called MM Blues (Multiple Myeloma Blues). Writing about my experience in a private blog also helped me stay in touch with family and friends. It’s a great way to control the information at my own rate. I’ve added humorous memes to convey the weirdness of the treatments and experience.
What I can recommend is that anyone with MM should learn as much as they can about it and build up your team of support around you. It’s amazing how friends and family can rally around your condition and really make a difference. If you can be creative in any way (write, draw, dance, play music, etc.), it can seriously improve the quality of your life.
For your family, this adventure will be as challenging for them as you. Please make sure the caregivers get the care they need. Your road to recovery is a group effort. For us, The Leukemia & Lymphoma Society (LLS) has helped with information and financial assistance. For that, we are enormously grateful. The loneliness of this disease can be attacked with love and support from everywhere you can find it. The map through insurance, drugs, and treatment is challenging. There is help everywhere. Keep your eyes open. There are groups of MM fighters around the world. It can be an overload of information, but with help, you can work through this experience. Achieving “normalcy” is the key. Getting your life back where you can be in control is your goal. I am optimistic that I will achieve that goal. It will take time and not always be easy. I do know that there are people and organizations around me that can help. I simply have to ask. Your life will never be the same, but it never was anyway. Whatever “normal” you get to is only as good as what you get out of it. Keep the creative spirit alive and you will always be fulfilled.
Ed
multiple myeloma (MM)
