Last Wednesday I coaxed my nurse practitioner into letting me read and keep the full biopsy report she had just received. She said “I don’t know how to interpret this”. My new oncologist also said neurology was beyond her. She did say that it looked like metastases had been ruled out, so that is good news. Now, I’m exploring new nooks and crannies of uncertainty. There is something oblong near my S1 nerve root that is now being called an ‘Unclassified spindle cell neoplasm’ The last sentence in the report is ‘There are no definite features of malignancy, however, the possibility of this being a malignant lesion cannot be excluded with certainty.’ I have read this sentence aloud with different intonations trying to figure out how it is weighted. I love good science; its refusal to leap to conclusions and to consider all possibilities, but not when it applies so personally.

I will be meeting with a neurosurgeon Monday afternoon with my list of questions that may or may not have answers. Depending on what he can tell me, I may request an appointment with the pathologist also. This was something  a physician friend suggested that I didn’t even know was possible. I’m going into high information gathering mode even as I question how much information will truly serve me in making wise decisions. Staying in touch with intuition is a challenge when fear elbows its way between us..

When I was first diagnosed with rectal cancer in 2006, I put all my research skills to use. I found much that helped me communicate better with my caregivers and informed my decisions. I also read and heard some things that frightened me deeply and cannot be unlearned. This time I am more careful when doing my own research. I can stop myself from reading the worst case scenario articles and statistics that used to draw me in like black holes.