If you’ve been following my blog, you likely know my story pretty well. Here it is in a nutshell, if you’re new here.
At age 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 had dialysis twice. Simply put, I was in BAD shape. These past nearly three years have been a whirlwind. I had a Stem Cell Transplant in February 2015, lost my hair, got my zero (aka negative M-spike), LOST my zero, left my career and got back – and am now maintaining – my beloved zero, which means I have achieved something called a Stringent Complete Response.
When an oncologist walked into my room 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 to hear him tell me I had cancer, let alone 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, 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 The good news is much of what is online (then and now) tends to be outdated and doesn’t reflect the many recent innovative treatments and advances in Myeloma care.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 helping patients who were 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 Myeloma has steadily increased over the last decade, a reflection of all this progress. Additionally, these survival rates are statistics and don’t tell everyone’s story – and I hope 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 this cancer every day.
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 is “cancer free”, a statement which should make the average person happy, especially fellow Myeloma warriors. But it has 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, 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, many 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 chose 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 this and how I live with it every day.
In medicine, there is an expression “When you hear hoofbeats think horses, not zebras”. It means that doctors are taught to look for the simplest explanations for symptoms rather than the more rare or exotic answer. Because of this and likely other reasons, Myeloma so commonly gets misdiagnosed. Many patients present with 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. I was young and healthy – I assumed getting sick and being a little rundown 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 herself needs that cure, of course I want this. There are 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.
And 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. Because I work hard (some days more successfully than others…) to maintain the mind frame of a person living with a chronic illness, I don’t freak out. Please understand 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 ….duh, duh, duh….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 for whom this disease is robbing them or their loved ones of their strength, hope and health. It has tried to do it to me. Without question it has changed all of our lives. And I don’t want anyone to feel the their struggles are being overlooked.
But each person and their families experience this in different ways, both good AND bad. But it is also important to realize some of us NEED to hold on to the idea this disease can be managed. Who 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 sadly 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.
Until then, #gameon