A few months back I had been excited when the nurse practitioner unintentionally gave me the wrong numbers and led me to believe that my tumor had miraculously shrunken. As a cancer patient, you long for the day they tell you that you are “NED” or no evidence of disease. Apparently, we no longer discuss remission (that means that disease is likely to recur and who wants that?). We discuss, instead, the fact that our bodies are no longer fighting the mutant cells of our own creating. We are free from cancer, even if it is briefly.
Dr. Brooks, at that time, had tried to inspire me by saying the following: Your cancer is stable. In other words, while we weren’t winning the war against the tumor, we weren’t losing the battle either. No growth, no real shrinkage. Stable is what most oncologists hope for in patients that have weak odds to begin with –something I only recently realized. I never thought stable was such a bad word before. Of course, I never had a mutant liver tumor invading my body either, so lesson learned.
When I brought up the surgery to Dr. Brooks, I had hoped that maybe I would find some secret cure in making someone cut. I still haven’t given up hope on the surgery being somewhat successful and buying us more time. Perhaps even just long enough to find the right drug to irradiate what remains. I cling to this hope and focused all my energy on it while laying still in a tube for two hours. I told myself the test would be work it, there would be progress and someday in the future a surgery that would help me move on from cancer and towards a whole new life. A life as an actual, post-treatment survivor.
What I didn’t expect was a phone call this afternoon from Dr. Brooks.
I love this man, sometimes. I really do. Honestly, I was worried about the results of my MRI. As I’ve mentioned, the pains are back; some days they are sharp and breathtaking, others they are dull and achy. I think the dull ones are the worst because they remain fairly constant. At least the sharp ones provide relief in between. On the pain scale, ten being the worst ever, the aches are a consistent seven while the sharp strikes are about a nine at their worst, though they fade fast. Milo gets frustrated because I’ll suffer through both without touching the oxycodone or even an ibuprophen. I’m trying to limit my medication use. Irony, yes?
Dr. Brooks, knowing I was worried, phoned to tell me he already looked at the draft of my MRI and wanted to let me know the tumors weren’t growing. What he said, to my utter disappointment, was that the cancer is stable. “The numbers are slightly better,” he said as calmly as possible. “No growth.”
And celebrating began in Oz for all but the Wicked Witch who had lost her beloved sister.
Yes, I did just refer to myself as the witch. Why can I not celebrate stable? Why will my heart and head not accept that the medications are keeping my cancer from progressing. This is a good thing, isn’t it? I am not going to be dying any time soon. I’m getting more time. I’m still fairly healthy. The tumor is not winning…
I guess it still feels like a loss to me. Chemo is toxic, intentionally so. It’s rough and the drugs are hard on me. I’m miserable. My quality of life is pathetic right after chemo. Sure, I rebound well enough to do my shifts, but I am tired so often. I’m hurting and sometimes it is a struggle to keep food down. How is stable so good when it means I still have cancer? There is still an orange-sized tumor occupying my liver. Smaller ones in my lungs. Icky, evil cancer cells floating in my lymph system. The cancer isn’t gone. I still have to deal with it and the side effects of the chemotherapy. If this drug was labeled the best to treat my cancer, then what is next? What hope do I have that something is going to give me the fifty years I promised my husband?
I’m frustrated now. I really hate the word stable. Milo says it isn’t such a bad word; after all it means we aren’t losing ground. I love my husband dearly, but he doesn’t have to deal with a week of really bad acid reflux after every meal because of the chemo. Or the nausea. Or the vomiting so hard his bones ache. Or the pain. Not directly. He watched helplessly as I suffer, which I know can’t be easy for him. But I don’t feel like this is much of a life. We can’t make real plans to do anything because of chemo dates and side effects. Our lives are on hold while we wait for NED.
If anyone has seen that bastard, point him in my direction please.
For now, I guess stable with “slight” improvement means more of the same. More nausea, vomiting, horrible days ahead.
Stable is a horrible word when you seek progress. I long for the day Dr. Brooks calls and tells me it’s all gone.
When will that day come?