How I found out

2012
Ultrasound was in September

This year has been the tough time:

1/16 blood work (slightly low WBC)

1/18 consult with a urologist because I had a routine ultrasound for fibroids and I complained about a hardness above the waist; they found cysts in my kidneys so they were worried about AMLs (angiomyolipomas) which can in rare cases present a risk for tuberous sclerosis (Tuberous sclerosis or tuberous sclerosis complex (TSC) is a rare multi-system genetic disease that causes non-malignant tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin). Somewhere in that month they sent me to the U of WA Center for Genetic Disorders, Dr Sybert, who examined me naked along with 2 other women in a black light for skin abnormalities. Great fun it wasn't but not scary since I seemed at so little risk.

1/31 CT scan

3/19 2nd abdominal CT scan which again showed enlarged lymph nodes so they did a needle biopsy and I had nausea from the fentanyl so it was a very long day.

PET scan is scheduled for end of April. This will determine if I have stage 3 (above the diaphragm as well as below the diaphragm). Stage 4, bone marrow involvement, will not be determined now.