Dreaming of a Cure: Fear, Follow-Ups and Scanxiety

No follow-up scan is easy, but some feel routine. When they don't, we have no choice as survivors but to face our fears and move forward, one step at a time, one scan at a time.

There are moments when I am half-asleep and lie somewhere between the grip of a nightmare and the light that beckons me to wake. In those moments of vulnerability, fear sneaks in and conquers whatever strength I've built up inside. I have a follow-up appointment tomorrow, complete with an MRI and a verdict about whether my tenth, and perhaps most emotional surgery, fixed the problem my brain tumor left me with. I don’t often dread appointments, the doctors will say what they will and I have little choice but to acquiesce to the perils of my body and a medical system that is perhaps at times overzealous. I suppose this time I am just plain tired. Ten surgeries, while it may seem like the routine of my life, is not easy. I rarely name the difficulty, but I feel great frustration at the amount of normalcy I am able to outwardly recuperate while inwardly, I am fatigued, in pain and scared of yet another cut on my body, another invasion into my humanity. I simultaneously want to remind those around me that I can’t keep up and hide that fact, leading them all to forget that they once saw me dressed in a pale blue gown, body attached to tubes, with an alarm keeping me cemented to my spot. I am conflicted by the turns and twists of my body while my mind wishes to be free of this chronic and cumbersome condition.

For the most part of my waking life, I am resigned to whatever fate the universe has created for me. I’m not a particular believer in anything; I "pray" to anyone who will listen that this ordeal will end and I can return to the life previously in progress. I am, for the most part, in my waking life, strong enough to brave the question of, "How did your operation go?" I am usually collected when it comes to my “condition” or I breezily laugh it off. But it is in the moments as my follow-up appointment nears where my defenses are down, the fear takes hold, and I have images in my mind of hearing the doctor confirm my suspicions. "The surgery, once again, did not work. You still have a spinal fluid leak; you need more surgery."

Though I am generally quite composed, though clearly a bit nervous and overly chatty in the doctor’s office, I imagine myself crumbling in my chair, pulling my knees up to me tight, my face completely covered by my hands as I sob uncontrollably. It's an image of me few have seen when it occurs in reality, and those who have seen it are anxiety-ridden, disappointed or dejected. I imagine these moments more than I let them happen. I find that despite how much my heart may break as I go through treatment, in the moments of its reveal I find the news rather mundane or commonplace. That said, I may be numb to hearing bad news, but I am not numb to its aftermath. I don't want to be the one to tell the people I love that they'll be confined once again to the sterile, recycled air of the hospital waiting room. I don't want to have to tell them more bills are coming or that more prescriptions need to be filled. I don't want to disappoint or cause this moment to overshadow memories of adventures that don't include hospitals, nor do I want to create apprehension or tension about the future. My future is bright. I know it is because my present, despite a few challenges, is bright.

So even though in certain moments the fear sneaks in, I put on my big girl panties, shore myself up and prepare for any news. Good or bad, the news I get won't take my love, my light or my life. I'm one of the lucky ones, even when paralyzed by fear. It's sometimes hard to see that.