Since my 2017 breast cancer diagnosis, I’ve been living with uncertainty, in juxtaposition to others’ expectations for concrete answers. I try to be direct with my inability to provide those answers. I still encounter other people’s desires for only the least uncomfortable news possible.
People want happy endings. We want to be reassured that a life-threatening disease no longer is that. Death will no longer happen. Health, healing, and prosperity are the only things on the horizon. My experience thus far, however, has shown me something more complicated and far-less gratifying. At the heart of this is the remission issue. People want to know about the diagnosed person—are you in (remission), or out?
When I was first diagnosed with cancer, before undergoing any treatment, I had family members respond to my “news” with ominous dread. Tears and vocal expressions of how I could die, abounded. So much fun. I had to weather those reactions, even though I was the one diagnosed, potentially dying, and certainly terrified.
I didn’t hear, “How can I help you get through this?” Instead, I often heard my own voice uttering such things as, “Don’t worry. It’ll be okay,” and even, “What can I do to make this better for you?”
Hello, codependency, my old friend. (I’m sure Simon and Garfunkel are harmonizing in the background somewhere.)
Are You Cancer-Free?
Eventually, life moved on. Still, I encountered more people fully expecting me to reassure them that I was cancer-free, with a “happily ever after” life. I heard some of it as I spoke with a well-known cancer support organization. Its receptionist, taking my information, inevitably asked me, “Are you cancer-free?”
My typical confronted response is something like, “Uh, I think so. My numbers are good, thus far.”
The receptionist practically jumped through the phone with delighted squeals. I, however, am less squealy. Since my diagnosis, I have encountered the muddy reality of physical issues and recurrence scares. And this leads me to a recent example of the pressurized expectation that I be “okay.”
Pain Is a Pain
I have had chronic back pain for at least 15 years. I get flare-ups that show up without warning. Throughout the years, panicky me has been in doctors’ exam rooms, trying to rule out various cancers, fibroids, and even appendicitis. X-rays, bloodwork, ultrasounds, and other assorted tests have been done, and I usually I get these test results back: “Muscular-skeletal. Degenerative spine. Bone spurs.”
In other words, back issues. I recently had another bout of pain in my midsection, which could have been back pain, muscular-skeletal, or, it could be something else, even cancer. My 2017 diagnosis has made that a legitimate possibility now.
So, I was in for bloodwork and an abdominal ultrasound to check my kidneys, pancreas, and gallbladder. I was greeted by a 20-something technician (let’s call her Ashley), who went about her job, squeezing the warm goopy gel on my midriff, roaming around, searching for abnormalities.
I watched my midsection on the large screen in front of me. To me, it looked like pulsating skulls imploding on themselves. I saw some red and blue moving blobs and asked Ashley what they were. She responded, “That’s blood flow.”
What Do You Write?
Things were quiet. She had me turn on my left side, then on my right. And then she started getting chatty.
Upon finding out I was a writer, she said, “So, what do you write?”
“Since my diagnosis, it’s been mostly about my cancer experiences.” “How are you doing?”
“Well, that remains to be seen. I’m trying to retain my survivorship status.”
“So, you’re in remission then?”
(Here we go.) “Hopefully, I am. Again, that’s why I’m here today.”
“My mother was diagnosed with breast cancer.”
“Oh, I’m sorry to hear that.”
“Stage four. She won’t get any better. She’ll die from it.”
(I wondered silently, “How do I respond to that?”)
I told her I would pray for her family. And I have.
But I must admit, I felt guilty for my uncertainty about my own remission status. I mean, really, the least I could do was absolutely know for sure where things stood.
Dying or not dying? Am I a lost cause or a victory story?
Didn’t I owe others—family, friends, and strangers—the exact detailed assessment of what was happening within my body?
(I hear Simon and Garfunkel doing their codependency vocal warm-ups again.)
But, for the rest of that day, and in the time since, I have been fighting guilt for not having the absolute answer to the pleading, pressure-filled questions, “Are you in remission?” and “Are you cancer-free?”
My honest response is “I don’t know.” The test results I have had thus far, including my ultrasound with Ashley, yes, things have come back “within normal range.”
We have all heard accounts of people who were not diagnosed—or misdiagnosed—for years, until it was “too late.” Similarly, we have heard the miracle stories of people who were given 3 months to live, and who are still living and thriving, years later.
Cancer is unpredictable. It varies from person to person, and that includes a person who has been typed and tested and treated in exacting detail. Inevitably, something happens that no one expected, for good or for not so good.
And no matter what context I am in—family, friend, patient, or stranger—I’m still faced with the obstacle of how to answer the remission question “correctly.” Am I “in” remission, or am I “out”?
It is an irritating challenge, because I have encountered people in a variety of circumstances. And the recurring theme in those circumstances was the demanding plea for reassurance that, yes, I was most certainly cancer-free forever.
I beat the disease, and I could and would completely meet another person’s needs for death-defying life. Does this rant of mine sound ridiculous, exaggerated, ungrateful? Perhaps.
But I have been stuck in moment after moment in which a well-intentioned, but perhaps ill-informed soul wants an unrealistic promise that further scares and even depresses me, such as the thought of Ashley’s mother. A grim report of her probable impending death, yet I am still, somehow, supposed to be okay?
Talk about conflicted! What am I supposed to do with that?
Normalize Not Knowing
It’s my own screwy head at play; nevertheless, there is an external desire coming from “others.” Some people outside of myself want me to make cancer okay for them. They want to be soothed, reassured, protected, and entertained. And this dynamic is not a healthy component of “cancer care” by any stretch of the imagination.
So, what do I do as I appear to keep living and I keep encountering the remission question? I continue to say, succinctly, “I don’t know. I hope so,” at least until I know definitively otherwise.
And, in the meantime, I can ask a question of you, the brilliant reader. Could you please refrain from asking the remission question of a person diagnosed with cancer? It’s never an easy question for him or her to answer.
If it’s good news, there can be the pressurizing expectation that person will always be perfectly cured. And neither you nor life itself can guarantee that will happen. If the answer to the remission question is not good news, then a much-feared reality has surfaced and reminded the diagnosed person of a painful matter he or she cannot escape.
If, like me, the person’s response is the nebulous “I don’t know,” resurrected doubt and shame can often surface.
Again, there can exist the need and the expectation for “we, the diagnosed” to perform according to specification. This is not healing for us. Diagnosed people need to conserve our energies, thoughts, and actions.
Free Us from Your Expectations
On any given day, we could be in cancer limbo or cancer hell. So, please, help us look toward our healing; allow us to be free from your expectations. Do something relevant for us. Help us in ways that we need, not in ways that you need. Stop expecting we will perform like a warrior or a survivor. That is asking too much. Love us and be with us.
Our cancer experiences will be what they are. They don’t need your permission to unfold according to your preferences. Please stop asking that they will. Are you in or out with these requests? We’d like to know what we can expect from you now.