I have cancer. Technically I had cancer. I’m now at a point which is labeled no evidence of disease. I often wonder what exactly does that mean? This term has been tossed around seemingly interchangeably with remission. Medically speaking, I’m not sure if there is any difference, but it seems to me that the powers that be (The Great Cancer Gurus at the famous Cancer Centers) think that no evidence of disease might sound more positive than remission. According to the National Cancer Institute (NCI) remission is:
- A decrease in or disappearance of signs and symptoms of cancer.
- In partial remission, some, but not all, signs and symptoms of cancer have disappeared.
- In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.
There is no definition for no evidence of disease listed, therefore I’m sticking with the theory that it is a made-up term intended to sound more appealing than remission.
I had some pretty serious lung cancer. At first it was believed to be Stage 3b, but that was before my brain metastasis was found. So technically, I had Stage 4 Non-Small Cell Adenocarcinoma with a brain mets. At 46 years-old I was given one of the worst diagnoses one could get. According to the latest statistics, there was a five year survival rate of just 5.6%. Holy shit. Imagine the moment that you realize that you’re going to die–quite possibly in the near future, and how you will die. I felt as if I swallowed a brick. Unfortunately, I had extensive knowledge about the type of cancer I had and the various treatment options because my mother had been diagnosed with the same cancer just 10 months earlier. I suppose stranger things have happened, but at the time we were all astonished–family, friends, and doctors. How could this be?
When I first accepted that I had cancer, I immediately began to plan my course of action–the secret to overcoming obstacles is taking control of them, isn’t it? I consulted with most of the doctors that my mother had and they were all as shocked as we were. I underwent weekly chemotherapy treatments, scheduled so that my mother and I could sit side-by-side to get our respective poisons. Despite our dilemma, we had quite a bit of fun together during those long hours. We were always hooting and hollering about something and having fun with the nurses. We were close to begin with, but now we shared a special bond. I also had daily radiation treatments for six weeks, and during the process an endless battery of scans to see what these barbaric treatments were doing to the cancer. Forget what they were doing to the healthy cells!
Eventually, it was time for me to go to a major cancer center for the surgical portion of my treatment. I went and had another scan to see what the final outcome of my chemo and radiation had been. It appears that there were two new spots on the opposite lung. The surgeon explained that they would go in and first biopsy those spots to see if the cancer had spread. If it had, then they would not proceed with the original surgery that was planned as they could not “chase it all over.” All of this was before they knew that it was already in my brain.
They operated, and when I awoke from the anesthesia I saw that they did not remove the main cancer on my right side. So much for all the chemo and radiation–all for naught. I was so sad. That’s really the only way to describe it. I felt sad. Not mad, not scared–just sad. I have always been a very optimistic person, and for the first time, I was looking at an outcome that I could do nothing about. Even my sunny disposition couldn’t change this.
Several weeks passed, and I was scheduled to return to the surgeon for a post-op appointment. I did not want to go. For what? So they could check my surgical sites? We had to go into the city; something we did often and enjoyed. But this day, my husband had to drag me there! I did everything but stomp my feet and refuse! We did go, however, and were sitting in the exam room waiting when all of a sudden the doctor flies in, looking at my open file and says, “Well this is quite a surprise–turns out the biopsy came back benign–it hasn’t spread to the other lung. We can schedule the surgery!” I was so confused. I had accepted my fate and now, she was telling me that my fate had changed again. Of course, I was happy even though somewhat stunned. I did have the surgery several weeks later.
A few months following, I developed some headaches and strange sensations in my left hand. Then one night I was in ShopRite and the left side of my face wouldn’t stop twitching! Another scan revealed the metastasis in my brain. So, back to the city, to the neurosurgeon this time, and eventually some more scans, brain surgery and radiation.
No evidence of disease now for five years. I go for CT scans and MRIs regularly; we have to make certain that I remain in remission. I had one scare in which it was thought I had a recurrence in my brain, but it turned out to be necrosis (scar tissue) causing seizures. Now I live, scan to scan waiting to see if my no evidence of disease status changes. Cancer survivors live with the knowledge that in all likelihood they will have cancer again in one form or another. How many people do you know who have been cured of cancer? Oh, there are lots like me who have gone many years in remission. The threat of its return is always there, hanging over you like a boulder waiting to fall on the Roadrunner–its always just one scan away. The funny thing is, once you have cancer, you can never not have it again. As I write this I’m thinking about the battery of tests I will undergo tomorrow and wonder if this time tomorrow I’ll still be able to say I had cancer.
Carol Raymond 