Here's Why I Choose My Words Wisely When Describing My Cancer
In October 2014, at the age of 42, I was dropped off at the ER by my husband and three young kids (then ages 4, 6 and 7) with an eye infection. No one was more surprised than me when I was admitted because I was highly anemic and had elevated — and rapidly climbing — calcium levels. Within 48 hours I was unconscious, on a breathing tube, a feeding tube and had undergone dialysis twice.
Simply put, I was in bad shape.
When an oncologist walked into my room on that October morning, he told me I had a type of cancer called multiple myeloma. It was scary enough to have an oncologist at 42 years old, and then I had to hear him tell me I had cancer — a type of cancer we had never heard of before.
On top of that, one of the first things he said to me was, “Multiple myeloma is incurable but highly treatable.” He also told me if I had been diagnosed five or even 10 years earlier, we would be having a very different conversation in terms of treatment and overall survival.
When you hear something like this, you crave information. I made the critical error of Googling myeloma and immediately regretted it. The good news is much of what is online (then and now) tends to be outdated and doesn’t reflect the many recent innovative treatments and advances in myeloma care. And there have been a lot of advances in the management of multiple myeloma.
There was a remarkable 15-day period in late 2015 where not one, not two, but three myeloma drugs were approved by the FDA. Additionally, there are many other drugs in the pipeline and hundreds of clinical trials underway. There is also incredibly promising work being done in the area of immunotherapy, which appears to be a game-changer — especially in helping patients who are running out of options.
That said, my doctor — an expert in myeloma — told me himself this disease (currently) has no cure.
Admittedly, the five-year survival rate for people with multiple myeloma has steadily increased over the last decade, which is a reflection of all this progress. These survival rates are statistics and don’t tell everyone’s story — at least not my story. I was young at diagnosis and otherwise healthy, and my response to treatment (while not without its challenges) has made me able to live with cancer every day — as many would if they had a chronic illness. I am currently in remission, having achieved something called a “stringent complete response” (an A+ in the myeloma world).
This past April, Lou Brock, a baseball Hall of Famer who played with the St. Louis Cardinals, was also diagnosed with multiple myeloma. Anytime a celebrity is diagnosed with the same disease you have, you hope it will raise awareness and educate others who, like you, had known little about this disease.
In the case of Brock, just a few months later it was announced he was “cancer free” — a statement that would probably make the average person happy and fellow myeloma warriors even happier. Not only that, but it also served to shine a light on an ongoing debate about how to characterize this disease, its treatment and its prognosis.
Because of that, I have been reflecting a lot about why this is important and why this language seems controversial. Brock said he was “cancer free” — not that he was cured — yet I have seen a pretty strong reaction to this language in the myeloma community. There are those who have a fierce and intense response to the use of words like “cured” and “chronic” when talking about multiple myeloma.
As someone living with myeloma, I desperately want to increase understanding about this disease. Many people choose to be private with their cancer battles, yet I am very public. At 42 years old, I did not — and do not — fit the profile of your “typical” myeloma patient. As such, I feel I have a responsibility to educate people about what it is and how I live with it every day.
In medicine, there is an expression: “When you hear hoofbeats think horses, not zebras.” I think it means that doctors are taught to look for the simplest explanations for symptoms rather than the more rare or exotic answers. Because of this and likely other reasons, I believe that’s why myeloma so commonly gets misdiagnosed.
Some patients experience a common complaint like bone pain, which is often labeled as arthritis, a sports injury or something else. In my case, I was getting sick — often and for very extended periods of time. I assumed this was because I had young children who were in school and were bringing home germs. Never once had I considered the possibility that I had cancer that was compromising my immune system.
I was young and healthy — I assumed getting sick and being a little run down was part and parcel with being a full-time working wife and mom of three! But early diagnosis is important with any illness, including myeloma.
Knowledge is power, and each time someone is diagnosed, particularly someone with any type of high-profile status, there is an opportunity to raise awareness and potentially funds to find a true cure. As someone who needs that cure, of course I want this. There are also some who believe saying someone is “cured” belittles the suffering that many patients are dealing with every day or dishonors the memory of those who are no longer here to fight anymore.
I understand all of this. I want that cure. I need that cure. I wish I had the type of cancer you can cut out, radiate or even proactively prevent. I wish I didn’t have this shrewd and sneaky cancer that is always working to outsmart the treatment being thrown at it. The type of cancer always lurking beneath the surface. But I do not.
What I have is this cancer, this “incurable but treatable” cancer. And for my own sanity I choose to focus on the “treatable” part, not the incurable part.
This gives me hope. It allows me to think I will be there for my kids’ high school graduations. This mindset helps me trust my husband and I will celebrate our 20th wedding anniversary — even our 30th or 40th. This keeps me calm when there is a blip in my test results from one month to the next. I work hard (some days more successfully than others) to maintain the mindset of a person living with a chronic illness so I don’t freak out.
I am not minimizing how incredibly difficult it is to live with any chronic illness, but doing this provides me with a sense of perspective I might not have if I was always thinking of myself having an incurable cancer. This outlook helps me see these challenges as bumps in the road but doesn’t mean the road is coming to an end.
I respect and ache for those whom this disease is robbing them or their loved ones of strength, hope and health. It has tried to do it to me. Without question it has changed all our lives. I don’t want anyone to feel the reality of their struggles are being overlooked.
I think people and their loved ones experience this in different ways, both good and bad. But it is important to realize some of us need to hold on to the idea this disease can be managed. We need to have faith that science is on our side.
I also realize that sure, it’s easier to be positive when you’re in remission. But I also say being positive is part of what is keeping me in remission (along with good old luck, a kick-ass medical team and wonderful village of family and friends supporting us). It’s also true there are many positive people who don’t have or didn’t have the same luxury of thinking this way.
The reality is cancer sucks, whether you’re the one fighting it or caring for a loved one who has it. Whether your cancer is the kind you can cut out, radiate or even proactively prevent. Or if you have the kind that is incurable but (supposedly) treatable.
Cancer is also an individual sport as my dear friend (also living with cancer) often reminds me. Survival rates are just averages and don’t always reflect what any one of us individually is going through. What works for me is a strong belief that I will live with this “chronic” disease until that “cure” finally comes along.
A version of this post was originally published on (Multiple Myeloma) Mom.
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