the roller coaster continues

I am back in LA, hooked up to four (4!) noise-making IV pumps, trying to ignore the tray of hospital food that makes me nauseous just looking at it, and pondering whether it is worth fighting with all of this tangled tubing in order to get myself into the shower.

While the tumor markers are both within the normal range, I had a CT scan on Monday evening in order to take a peek inside and see how things are going. The next day, a hapless resident, unfamiliar with my case, came into my room and announced the “good news!”: my tumor mass had reduced by more than 50%! It took a lot of self control not to punch him in the face, for this was not good news at all. In fact, it was terrible news. I had been led to believe that these last two rounds of chemo were basically overkill, in order to be absolutely sure that every last minute speck of nastiness had been killed off. I had begun to plan a vacation, and my re-entry into real life. The prospect of further rounds of chemo and surgery were extremely disturbing. I momentarily forgot, as did he, apparently, that he didn’t really know what he was talking about, and had no decision-making capability or responsibility. I freaked out for four hours, until the oncology fellow (further up the totem pole) poked his head in the room, and clarified things a bit (hah)”: Apparently all of the junk that is still apparent on the CT could be/but we don’t really know/might be/is probably just dead tumor, or scar tissue, and in any case decisions will probably/maybe be made based on tumor markers, which are low. But the real decision maker, the head oncologist, is in Paris for a conference, and doesn’t want to commit until he sees the CT for himself on Friday. No matter what the treatment plan becomes, this has all been unnecessary, as far as I am concerned. I understand the desire to keep a pesky patient/medical student informed about the latest results, but there also needs to be an awareness that information without context can be damaging. It was a reminder that the information contained in a patient’s chart is more than a series of chronologically organized data; these cold figures in fact represent real life dilemmas for a real person, and that the doctor must take into account the patient’s prior experience and expectations before waltzing in and dropping bombs.

This latest vague and difficult news does not lend itself to planning and prognostication. At this point, I am attempting to remain calm while waiting for more information, and trying to remain focused on the outcome that I want: to be done with this current ordeal in three weeks, and to get back to my life.

I will be out of the hospital come Thursday afternoon, with no cisplatin and amifostine to weigh down my exit. Hopefully this means a quicker and less miserable recovery. If it looks like I will be able to care for myself, I am tempted to send my mother back on up to Palo Alto and remain here in LA for the week, to re-inhabit my apartment and my life, to begin to stake some claim on being an independent 27 year old again.