There comes a time when we begin to realize we’re not immortal. For me, that was when I was diagnosed with multiple myeloma.
Multiple Myeloma is a cancer of the blood where a certain protein becomes cancerous and then clones itself over and over, eventually forming tumors in the bone marrow. There have been several new drugs and treatments introduced over the last few years which have extended the life expectancy of patients, but there is no cure.
I had known for years that I could eventually develop the disease. I’d had smouldering myeloma, it’s precursor, for a decade. There’s about a fifty percent chance that the cancer would progress from the smouldering phase to the active phase within the first ten years, so I was right on schedule. I was still shocked by the diagnosis, though. After ten years of nothing I figured I was in the clear.
The average life expectancy of someone with multiple myeloma is three to five years, although with recent advances many people are now expected to live many years longer. I’m nearing six and my protein levels are still pretty low, although lately they’ve begun to climb again. I consider that pretty good.
I’ve been lucky. As the disease progresses, tumors develop in your bones and spontaneous fractures can occur. So far the disease has not damaged my bones.
I underwent a stem cell transplant in 2013. Sometimes the stem cell transplant doesn’t work. Mine did, and I was home two weeks after my stem cell transplant. There were a couple guys who’s first stem cell transplant didn’t take and were into their second transplant. I was out of work for six weeks, post-transplant, the minimum required, then returned to work full time. A work acquaintance who had the same disease, underwent a stem cell transplant one week before me and even had the same oncologist returned to work part time and then retired a year later. So, yes, I’ve been lucky.
There have been some positives. I’ve lost a little weight, so I’m right where I should be as far as BMI. My wife and I eat a lot better than before, with a lot of vegetables and organic foods. I’ve cut out sodas and most processed sugars. We’re working on staying healthy.
Don’t get me wrong. Having cancer sucks. I’m always tired. I can’t spend a lot of time in the sun because skin cancer is a real possibility. The chemotherapy drugs have some pretty maddening side effects, and that’s always a concern.
Then there are the costs associated with monitoring the disease. So far, I’ve had three bone marrow biopsies, a stem cell transplant and I’ve been on chemotherapy of one sort or another for six years. The chemo drugs are around $200,000 per year. Doctor’s appointments and full blood panels have to be done every three months, and they aren’t cheap, either. I blew past the million dollar lifetime insurance cap that existed before Obamacare within four years of my transplant.
These days depression is an issue. Multiple myeloma is never cured; the best you can hope for is a reduction in the protein levels to keep the disease at bay. You live in constant fear that the disease will suddenly start growing again, that the chemotherapy drugs will stop working or that the treatment will become too expensive.
For years I worried about insurance because I now had a pre-existing condition. After Obamacare I had to worry that the GOP would repeal the law. Now I worry that they’ll simply roll back the lifetime cap or the pre-existing condition protection and I’ll have no insurance. There’s plenty to be depressed about.
Because my protein levels are once again climbing, I had an appointment with my oncologist to discuss future treatment. There are several new drug therapies that we can use, but before we can decide on which one to go with I have to undergo another bone marrow biopsy. I’m not looking forward to it. I’ve had three already and I can honestly say it’s probably the most painful thing I’ve ever experienced. But it is what it is.
So for now, I’m kind of up in the air, waiting to see what the future holds for me.