For quite some time, I have come to the realization that not many people even realize what multiple myeloma is. After watching my own husband persevere through his tough days and struggles with this cancer, I have been trying to brainstorm ideas on how to bring more awareness and research dollars for a cure to this cancer.
My husband is a strong, generous, resilient, and positive human being that deserves all that life has to offer. When I realized there had never been a 5K race and the entire state of Florida for this particular cancer I knew it was time to step up.
My husband has a lot to live for, including a son on the way due in 2016. I, personally, need my son to have his father around for a long time. Therefore, I was excited to do what I can to help find a cure for this cancer, not only for my husband, but for my son to have his father around, and for all the others who struggle on a daily basis as my husband does.
I am beyond excited at the awareness we have already brought to South Florida and am humbled and inspired by all the stories, struggles, and triumphs that many have endured already. I look forward to finally seeing a multiple myeloma 5K event come to light in the Sunshine State of Florida with a great deal of promise behind it.
You never know. I'm at the office in October 2004 and receive a call from a good friend, Bob. He tells me that since he had just turned 50, he thought he should go for a thorough physical. He sets up the appointment and other than expecting to get a little lecture about his 25 extra pounds he should get a clean bill of health. Surprise, the doctor tells him he has some major arterial blockage and needs surgery. After telling him that I have not had a complete physical in several years, he urges me to do the same.
Like Bob, I am expecting results that will be stellar, after all, I eat reasonable well, work out four times a week, do plenty of cardio and feel great. So to prove to myself that I am in great shape I set up the appointment with a local internist. He runs a full battery of tests, takes enough blood to send off to the lab and tells me that he will call me as soon as the blood work comes back. He also says that everything looks good so far.
About a week later the internist calls. He says that there was a slight abnormality – some extra protein in the blood. Probably nothing that could not be handled with a daily pill but recommends I see a nephrologist. I look on my health plan and start making calls to set up an appointment. The earliest appointment I can get is four months away so I try a different approach. I called another nephrologist and explained the issue to the receptionist. She asks if it is urgent. I respond that I really do not know but give her the name of the internist to call. Ten minutes later she says that I have an appointment that day.
This is the first inkling I have that this could be more than an irritant. The nephrologist does some more tests and explained that while I have extra protein, it is probably an issue that can be fixed by taking a blood pressure medicine. An ancillary effect of this drug is to remove the extra protein. However, he says I should probably have some more specific testing done. He takes more blood and advises that he will be in touch after those results come in. A few days pass and I get a call from his office while I am on a plane so the call goes to voicemail. I land, get to my car, and retrieve the message. His office says that some more testing needs to be done and leaves me a number to call to set it up. I called the number and because it is after hours I get a message center – "Lynn Regional Cancer Center". This is the first inkling that I have that I have some type of cancer -from a recorded voicemail message.
I was dumbfounded and clueless. I called a friend that was a pathologist and he immediately advised me to see a hematologist. He recommends his brother who had previously been at M.D. Anderson Center in Houston. Within days I was confirmed with a condition I have never heard of and went through the usual steps – shock, disbelief, anger, etc. Fortunately, that did not last long and after a great deal of research, including visits to the Mayo Clinic in Rochester Minnesota, I realized that while I would need plenty of assistance, it was equally up to me to deal with it and fight. I remember being told about a seminal study that showed the average life expectancy to be something under five years. I asked for raw data behind the study and when I finally received it, saw that the average patient age was around 72. There just was not a lot of information and research out there regarding the disease. Like a lot of other things, it is a matter of numbers. The more awareness there is, the more likely that there will be more research and focus on this condition.
Twenty five years ago we were in the same place regarding breast cancer and obviously tremendous strides have been made both in extending the lives of those who have the breast cancer and even more importantly, curing most cases than ever. Multiple myeloma research and treatment is a scientific work in progress. The more attention and research dollars that it receives, the faster exciting new treatments will be developed.