Column: 'Scant' Know For Sure Anymore

Column: 'Scant' Know For Sure Anymore

After six years, four months and two weeks since being diagnosed with stage IV, non-small cell lung cancer (the “terminal” kind), I can say with certainty that I have no sense of what my next CT scan, scheduled for July 15th, will indicate. Previously (multiple scans over multiple years), I’ve felt something in my upper chest/lungs where the largest tumors are located and the subsequent scan showed nothing of consequence. On other scan occasions, I’ve felt nothing of consequence in my chest and the scan showed tumor growth, enough to change my medication. On still other scan occasions, I have felt something in my chest (where the tumors are located), and sure enough the CT scan showed some growth. Finally, and conversely, on still other CT scans, I’ve felt nothing of consequence and there was no tumor activity of concern. As a result of these four contradictory-ish indicators of possible growth/no growth, for the weeks, then days, leading up to my every-three-month CT scan, I never know what to think I feel any more than I know what to feel I think. Thirty or so scans into my cancer-controlled life, I’m still teetering emotionally before, during and after the computerized tomography. And though the actual scan itself takes less than a minute, the damage is done and can only be undone after we learn the results.

Which oddly enough presents another similarly juxtaposed problem. In the early years, during our post-scan “scanxiety,” waiting the week or so until our next face-to-face appointment with my oncologist to learn the results was unbearable, so usually I would call a day or two later and get a message to him or my oncology nurse, attempting to speed up a response. Typically, I would hear back sooner rather than later. Eventually, e-mail communication became part of the process, and after my scan was completed, I started e-mailing my oncologist directly, advising him of my status and asking for results.

Usually, the news was good. Occasionally the news was not. And though my oncologist would rather have delivered bad news in person, he certainly could appreciate how difficult it was for me/patients to wait, so he continued to e-mail. One time however, the post-scan e-mail he sent us was discouraging and said he would discuss it further at our next appointment, scheduled as usual within the week. When he saw us in person, he was surprisingly upbeat and immediately told us/apologized for having e-mailed us some incomplete information concerning my scan, and told us instead that the “results were good,” not bad, something about the radiologist comparing the wrong scan (he had me at “results were good”), the exact kind of potential miscommunication waiting and discussing results in person eliminates. As a result, we have, with experience gained over the last few years, begun to be able to wait for the appointment to discuss the scan and not stress too much in the interim, generally.

Since we stopped e-mailing and requesting scan results, my oncologist oddly enough has, on his own initiative, e-mailed us good news, not e-mailed us bad news and not e-mailed us good news. This inconsistency has remade the time leading up to the scan stressful again, because now we don’t know what not hearing from the oncologist might mean; heck, it might mean nothing, it just might just be that he’s on vacation (as was the actual case one time and it was no one’s responsibility to inform us of anything so no one did). Of course, we didn’t know, so naturally we went negative thinking it was bad news.

Similar to the CT scan results meaning/not meaning, this is not exactly two halves making a whole, this is more like eight quarters making up two different wholes. Unfortunately, easy is the last thing it has become, when it’s the first thing it needs to be. Cancer is tough enough on its own. It doesn’t need any help. I’m extremely grateful to still have a chance. I just wish I had more of a choice.