I guess I can call myself a survivor. I never knew at what point one could claim that status but since Feb 14, 2010 marks 7 years since I was diagnosed with Multiple Myeloma, I think I might qualify. Afterall, I did not die. In fact, I am quite alive. My then (as in now former) hematologist/oncologist informed us that the life expectancy was 18-24 months. I showed him, all right, as well as my nephrologist, who told me later that he only would have given me 4 months from the amyloidosis diagnosis which came six months later. To his credit, though, he did admit that he didn't know anything about amyloidosis and couldn't help me. So I have been going to Dr. Angela Dispenzieri at Mayo and never looked back. I now have a wonderful local nephrologist in Marchelle Hofeldt and, of course my Mayo nephrologist, Dr. Nelson Leung.
My symptoms had started about ten months before my initial diagnosis of MM. I called in sick for the first time in 8 years of teaching right after the Christmas holidays when I had been laid out (yeah, laid "out") on the couch with a high fever for several days. I got better but one of our cats got suddenly sick with kidney issues. After taking her to the day vet in the morning and to the night emergency vet in the evening, she showed no signs of getting better and we had her put to sleep. That was the single hardest, most painful thing I have ever had to do in my whole life and it still brings tears to my eyes to recall that time. Then, about a month later our other cat had a stroke. We took him to the "cats only" vet and he died within 24 hours.
I tell you this for two reasons: first of all, I will always wonder if a virus was the catalyst that sent my immune system into overdrive and mutated immunoglobulins, and secondly, if there is a connection between my illness and my cats' sudden illness and subsequent demise. Furthermore, I need to remember and share with others that sometimes the most difficult things we have to do in this life are not what we endure, but what we see others endure, our beloved pets suffering and the pain and tears on my children's faces when they died. I have learned that my dex-induced mania and volatility, weeping legs and subsequent passing out from loss of electrolytes were far more difficult on my dear husband, Dave, and my young adult children than on me, whose reflection in the mirror showed only a healthy-looking steroid glow. Caregivers everytwhere, I salute you.
Today I am in a good place, hematologically in CR awaiting more kidney improvement. I am very careful about salt and diligent about exercise. Tai Chi helped restore my balance and muscle strength. Dance workouts, yoga and walking have helped keep me toned with minimal edema. I recently completed my first 5-K. Crossing that finish even line dead last gave me more of a sense of accomplishment than anyone can imagine. It doesn't seem that long ago that I could hardly get in and out of a car.
I must give some credit to Dr. Durie, IMF head honcho. who, in a phone conference from my hospital bed, steered me to Mayo Clinic and Dr. Dispenzieri. Although my stem cells are "on ice" I have only been on regular chemo protocols since first diagnosed in 2003, first with MM, then 6 months later with amyloidosis. I continue to go to Mayo every 6 months for follow up and pull teeth to get lab work done in between by my local hematologist/oncologist. Dr. Dispenzieri says MM is no longer part of the picture. Early on she said the label was just a matter of semantics anyway depending on where you draw the line in percentage of plasma cells in the bone marrow.
I owe as much to Muriel as to my Mayo doctors. Her untiring leadership and relentless encouragement have literally saved lives, mine included. Our voices are strong now- the medical community is listening, and we are living rich lives longer now. The sun is shining and I'm making hay! My advice to newbies: don't forget to dance, and especially don't forget to pray and thank God for this day, for our friends and caregivers, amyloidosis experts and support groups, no matter what else happens. Together we will make a difference.
Good first- we have a date at Mayo to get retested for kidney transplant. I will have another EKG, chest X-ray, echo, and battery of pulmonary tests. I am optimistic about getting the green light because I have a lot more stamina now with all the fluid off my chest, and no shortness of breath. Hopefully there won't be any last minute surprises- unless they say "we had a cancellation and two teams ready to go, what are you doing tonight?"