I’ll never forget the first time I heard the words “multiple myeloma.” Just the name alone sounds ominous and intimidating and I immediately found myself feeling so frightened, serving as a harsh reminder that one of the innate elements of being human is the tendency to fear that which we do not understand.
My mom had been to the doctor to determine the cause of the chronic back pain that had beset her for over a year. My siblings and I suspected it was somewhat serious, given the amount of pain she had been in. But I was thinking more along the lines of a herniated disc or degeneration of some kind that might require surgery, but certainly nothing life threatening. The doc ran a number of tests—including a biopsy.
The next day, my dad called and I could tell by his tone and delivery that it wasn’t the best news. He wasted no time and with a strange shaking in his voice, got right to the point. “Mom is sick. It’s multiple myeloma. They’re saying three to seven months.”
The first thing I felt was confusion. This was about her back. How can someone’s back result in anything that includes the words “three to seven months?” Instinctively, I played dumb as if I didn’t know what the words “three to seven months” meant. I somehow figured I could make it all go away if I pretended it wasn’t real. I took a breath and asked, “Three to seven months for what? Of treatment? And what the hell is multiple whatever-you-called it?”
It’s funny how our minds work at moments like that, because within a split second I became acutely aware of the most basic, intrinsic bodily functions such as breathing, blinking my eyes and swallowing, none of which seemed to be functioning properly all of a sudden. And then dad said the two most horrible words I have ever been forced to hear. “It’s cancer.”
Forty seconds. That’s all the time that had passed since the phone rang and yet it felt like I had just lived through an eternity in hell. I don’t think I have ever experienced such a myriad of emotions in quick succession, all in less than a minute. It was a bit like the various stages of grief we’ve all heard about, yet slightly different. First, there’s shock and disbelief. You think, “No, this doesn’thappen to MY family. It happens to other
families.” Then comes denial, often in multiple stages. “It’s a mistake—a misdiagnosis. No, it’s a LIE!!! Maybe just a bad dream. I’ll soon wake up and laugh at how crazy it was.” Close behind denial is the feeling of desperation once you begin to realize it isn’t a dream-–and that is momentarily abated by a false sense of omnipotence, as you convince yourself that you alone possess some secret superpower that can actually remove cancer from a human body. You find yourself not just thinking but actually believing, “I can fix this. I’m strong. I’ll do it.” It only lasts a moment, though, before the real world quickly reappears around you and anger sets in. At that moment, the saying, “reality is a bitch” takes on a whole new meaning. The manifestation of my anger resulted in the phone being pummeled at warp speed to the floor, causing shards of hard plastic to be hurled across the room. My cat sprung from her nap, immediately vaulting herself into the air, batting away at each piece of what used to be our first-ever cordless phone (a technological marvel at that time) as if she were trying for a grand slam home run. The anger finally gave way to a kind of fear I don’t think I had ever experienced before, one that I felt in every bone, muscle, cell and strand of hair. It’s the worst kind of fear—the helpless kind, the one that’s so overwhelming because it suggests certain failure and doom and you feel powerless to do anything about it. And then it hits you—all of the worst emotions working in tandem, each at full force—fear, anger and despair—and each multiplied by a thousand.
Anyone who has had to brave the moment of discovery that a family member or loved one has cancer understands the shocking impact the experience delivers. In my case, the situation was exacerbated by geography. Mom was 1,250 miles away and of course, I was on the first available flight to be with her and the rest of the family. But what about next week? Next month? You begin to methodically plan the steps required to move your life across the country before you realize the magnitude of such a task. And that only makes the pain that much worse. Two siblings both lived close to mom and dad, but they also had busy lives. How were we going to accomplish this?
There are just a few of countless examples of what loved ones go through when cancer decides to kidnap your family and hold you all hostage. Unless you’ve lived it, it’s impossible to understand. You are forced to all of a sudden take on roles for which you feel so ill-prepared, but roles that must be assumed nonetheless.
In so many situations like this, one person rises above all others and assumes the primary leadership role, whether they want to or not. It’s not about “want to.” It’s about “must do.” For us, that person was my brother. Not only did he become the general of our cancer-fighting army, he dropped almost every aspect of his own life to ensure everything that needed to be done was completely engaged. He took a leave of absence from work, dropped the class schedule he was taking to pursue his master’s degree and took complete control of the family, letting me know what weeks within the next six months I would be most needed at home, allowing me time to book my flights accordingly, get those dates on the vacation calendar at work and be as frugal as possible by not having to pay exorbitant, last-minute airline fares. He was so dedicated to this process and to the job no one ever wants—so focused that it cost him his marriage. Admittedly, it wasn’t the most solid relationship in the first place, but the added strain of becoming primary caregiver was simply too much for the relationship to survive. Because of him, mom felt a sense of indescribable security and comfort that was necessary for her to remain strong enough to fight. Only my brother could assume this role. Not me, not my other siblings, not my dad. I used to be ashamed of that, but not so much anymore. It simply is what it is. While supportive and strong in other areas, executing the duties required of this leading role was something neither my father nor I were programmed to provide.
Mom lived two and a half years longer than they said she would, a miracle that I am convinced only happened because of my brother. There are so many heroes just like him, family members who are suddenly faced with what seems like an insurmountable, even impossible task. But it only seems that way to us because the rest of us are certain we could never accomplish such a feat. I realize this is a phrase that is so overused and incredibly trite, but it’s the perfect way to describe these amazing superhuman beings: unsung heroes. They desire neither praise nor credit for their actions, nor are they likely to get it. Their outstanding accomplishments are usually overshadowed by the patient’s deterioration or, ultimately, death. Only when the patient has success with their treatment and achieves remission or cancer-free status are these people likely to be presented with the verbal accolades so due them. But here’s the thing. They don’t care about that. It’s not about them. It’s about the mom, dad, sister, brother, partner, best friend, whoever the patient happens to be. And because they are so selfless, they wouldn’t have it any other way.
I wish I had written this in November, since that is National Family Caregiver month. Oddly enough, that’s the month mom eventually lost her battle with the execrated scourge we call cancer. It’s also the month of my brother’s birthday. Pretty cool, huh? I thought about filing this away until next November rolls around—and maybe I’ll resurrect it at that time. But for now, it’s my loving tribute to the selfless millions who are the winners of the award for Outstanding Performance by a Caregiver in a Leading Role. Whoever you are, on behalf of the rest of us who stand in awe of you, and anyone who understands what I’m talking about, thank you. I love you.
How You Can Do Something to Help.
Here’s an idea. How about making a donation to help fight cancer, but doing it in the name of a superhero or caregiver? It’s a pretty cool way to acknowledge what they’ve done and all that they’ve given. Click here to make a tribute gift to Colorado Cancer Research Program in the name of your hero. You’ll feel good about it. More importantly, they’ll feel GREAT about it.