Guest blogger Yelak talks about leading and directing your medical team
Who is Goliath? Goliath, in the Bible, was a giant who couldn’t be defeated because of his huge size and power. In our world of myeloma today, Goliath is the might of medical care, medical insurance, treatment options, clinical trials and all the daunting tasks of living and dealing with myeloma.
You and I, the myeloma patient or family members, are David. Unlike the story in the Bible, if we go up against Goliath one on one we’re likely to be flattened. So, we don’t do battle with Goliath; we learn to deal with Goliath. Over the last 20 years, since I was diagnosed with myeloma at age 25, I have just done that. Let me note that I am not a medical professional. I am a patient and would like to be considered a “customer” of Goliath.
When I was first diagnosed, I hadn’t even heard of multiple myeloma. I almost certainly didn’t have any idea about what treatment would be best or even what the options might be. Even physicians who come to our support group diagnosed with myeloma rarely know much about the disease -- at first. Thus, initially, I relied on what my oncologist/hematologist said I must do. Before long though, I became educated enough to form an opinion about the treatment I wanted.
Doctors are trained to take charge, and most patients, alas, don’t really want to know much. They just want to be fixed! But, if you want to lead and direct the medical team that “fixes” you, here is what I think you should do.
I would never have imagined that at the age of 29, I would be lying in intensive care fighting for my life with stage IV anaplastic large cell lymphoma (ALCL). What a wake-up call, literally!
Nicknamed “Sleeping Beauty,” I woke up after three weeks to learn my true diagnosis following months of illness. By the time I opened my eyes, I had already undergone my first five-day round of chemotherapy…with five more sessions to go. It was going to be a long summer.
But as it turns out, the treatments, emotional struggles, and spiritual awakenings were only part of the battle. Soon enough, the bills began rolling in.
I tend to be a Type A planner. The better insurance policies, retirement plans, a couple of savings accounts for a rainy day, and frugal spending were all my style. Lymphoma was not part of the plan.
Where to start?
So what did I do? At first I skated by paying the smaller bills with my income and savings. I made my way through the wealth of sick days I had accrued and spent a great deal of time at Atlanta Cancer Care of Northside Hospital and the Bone Marrow Transplant Group in Atlanta, Georgia. When I was coherent enough to begin my research, I didn’t focus on only lymphoma and care and nutrition, I also researched options for financing such a journey. I began with the office social worker -- and what an impact this had on me.
From the day I started taking Gleevec pills to manage my chronic myeloid leukemia (CML), I understood I would depend on them for the rest of my life.
Or will I?
Things have changed more than a bit since I was diagnosed eight years ago and studies are showing there could be a drug cure for a disease thought to be incurable. The evidence is showing that this “treatment-free remission” isn’t likely to happen for everyone, but just the mere possibility was enough to send me cyber-scurrying for every scientific journal I could find.
I would be happy to not have to do an anti-nausea dance every night or worry that missing a pill will send my chromosomes into a frenzy. The latest research shows that some CML patients who’ve reached a deep long-standing remission may be able to stop taking Gleevec (imatinib) and have no recurrence. Two of the most well known CML medical experts have even said publicly they are optimistic. Woo-hoo!
But wait, this is my life we’re talking about. Research is just that – research. Here at The Leukemia & Lymphoma Society (LLS), we know that a promising compound has to weather years of study and numerous clinical trials before it emerges as a marketable drug. And in this case, it seems mind-boggling that someone would stop a drug that was hailed as a major medical breakthrough (making the cover of Time in 2001) and say, “I’ve had enough. Let’s see what happens.” Just because it worked for some people in French and Australian studies doesn’t necessarily mean it will do the same for ME.