The Meaning Of NED
Despite the obvious simplicity of the phrase "No Evidence of Disease", it's easy for a mesothelioma patient to convince him, or her, self that it actually means "cured". As I discovered on April 10,2006, it means nothing of the kind. It actually means exactly what it says, that evidence for the existence of disease, or the presence of a recurrence, isn't sufficient to warrant action. What we must keep in mind is that NED status is temporary and easily revoked.
The pathology report from my endoscopic needle biopsy has finally revealed what neither I nor my oncologist could bring ourselves to believe. The luke-warm "hot-spot" in my chest, behind the esophagus, is actually a small patch of mesothelioma that has been there since Christmas of 2002. Don't ask me why it hasn't progressed. Don't ask me why I don't feel sick. Don't look for reasons why this thing didn't measurably grow larger until 2004. I can't provide answers, only facts.
The fact is that I can no longer claim the status of having no evidence of mesothelioma. How long I was actually free of this cancer, if at all, will remain a mystery. It is possible that this little cluster of mesothelioma cells, no bigger than the last joint of my pinky finger, has been there since the day the surgeons at Brigham and Women's hospital closed me up. Why there has been so little progress in the tumor's growth since then is a complete enigma.
So what does this actually mean? Despite the shock of hearing the diagnosis of mesothelioma again I must confess that I expected it at some point. I also must admit that I know that the test results won't kill me. The cancer might, but that remains to be seen. I still feel pretty normal for a guy with one lung, half a diaphragm, and a bruised ego but I don't think I'm going to drop dead tomorrow. At the rate this thing has grown in the past, it may take me a long time to get there.
Clearly the situation I am in now is materially, and above all psychologically, different than my situation of almost five years ago. At that point I learned that I had a hopeless prognosis, that I was afflicted with a universally fatal cancer, for which there was no standard treatment, and that my chance of living to see two more years was slim. I did, however, have a lung and pleural lining that I could sacrifice on the altar of surgical science in the hope of obtaining a medical miracle, a new lease on life and a possible shot at a cure. I gladly made that exchange, and in my heart I hoped, no matter how unreasonably, that I might find a cure.
Did I mention that almost no one has actually ever been "cured" of mesothelioma? Steven J. Gould appears to be the record holder. He lived 20 years after his diagnosis, only to succumb to another cancer in his early sixties. I truly had no right to expect to do better, yet as the months rolled by, NED became my credo and my watchword and I convinced myself, as best I could, that I was out of the woods.
You may wonder why any sane person would do that to themselves? Let me clue you in. Have you ever tried living without hope of a future? It can't be done. Living in the moment is something Phil Jackson can try to teach Kobe Bryant about basketball discipline but neither one of those guys really has a clue what coping with a death sentence is like. Living in the moment isn't practical. You can't wake up every morning, committing yourself to the phrase "carpe diem" - use the day. Nobody is that good that every songbird will be noticed, every flower admired and every sunrise appreciated. Living in fear of death wears on you. You cannot live in a state of suspended animation, every moment wondering how much longer you have. You eventually go mad if you cannot cope somehow. You have to find ways to convince yourself that it's OK to plan a vacation two months out, to commit to a function six months in the future or to tell your daughter "sure honey, plan your wedding for 13 months from now. I'll be there." You just can't help yourself if you want to remain sane.
Then reality strikes and the proverbial "scan from hell" rears its head at the latest checkup. Mine wasn't quite so dramatic. It merely noted that after almost four years of doing nothing, the little blob of tissue in my chest had grown about 25% in six months. The problem with a radiological report is that it's simply too inaccurate to say for sure what this means. In my case, my oncologist and I discussed several exotic theories because the lesion hadn't demonstrated any kind of aggressive growth in well over three years. First it was irritation from the artificial implants in the area and then it might be low grade infection. This just COULDN'T be mesothelioma.
My oncologist even suggested that the scan seemed to indicate a herniated liver that had penetrated into the mediastinum and that this little piece of tissue was actually liver. To his credit, we found a 7 year old, castrated, short haired British cross cat in the medical literature that had once demonstrated that exact condition. What had masqueraded as tumor then turned out to be a herniated liver. There were also four human cases of thoracic tumors that turned out to be liver; all since 1980. At best, this meant I would be in the record books but still NED. Alas, the cat remains as the sole claimant to the title. My biopsy came back malignant.
The shock of losing NED is slowly giving way to the search for a new purpose and a new hope for treatment. I have been given strong encouragement to pursue chemotherapy by my doctor friends, who specialize in mesothelioma. But to my mind this seems like an end-game strategy and in my view we are not yet even at half time, let alone at the two minute warning. Based on the location of this tumor in my chest, adjacent to the esophageal wall, brachytherapy seems like a simple, non-invasive and effective way to treat this. A needle, similar to the biopsy needle, would be inserted into the tumor, containing within it some radioactive seeds that would be left in place only long enough to kill the tumor and leave the surrounding tissues untouched. There is gene therapy and immunotherapy that might be practical if viral vectors can be injected directly into the tumor mass. Again, endoscopic procedures may hold the key to treatment. There is also the opportunity to pursue chest surgery, to reenter the pleural space and track down this nub of malevolence and rip it out. Messy and dangerous, this procedure may risk more than it returns.
In the final analysis, I need to find a way to put NED back on the radar screen as a goal and as an objective. Without NED as a target, I cannot feel comfortable. I am not willing to throw in the towel and I am not sick enough to be pursuing treatments of last resort. I will use the resources that are available to me to make the next move as judiciously as I can with the goal in mind of removing this one reminder of my disease and then hoping that I can again say "No Evidence of Disease". The true meaning of the phrase is clear to me now. It is the struggle that all of us endure to survive and to fulfill our dreams. I am dreaming yet.
Sincerely yours,
Klaus
