CA19-9

It has been a while since my last post. In March 2010 I was diagnosed and surgery was scheduled for June 2010. The resection was a success all nodes and margins were clear. However they suggested I do a round of Chemo to be safe as an adjunct treatment. So this started in August/september. I had a difficult time couldn’t get a rhythm going due to levels and getting sick. Thus they suggested I stop. By christmas 2010 I was referred to hospice. However hospice didn’t feel I was ready and they would check in on me for future care. In March 2011, a large grapefruit tumor was noted and the team decided not only did I have cholangio but now it was also Ovarian so immediate surgery was set up for the end of March. One more sugery and then the case went to the tumor board between the city I live in and UCSF. The outcome was no other options. Back to hospice who again said not ready and then more chemo suggestions. Didn’t go that direction as I didn’t want to feel sick and go in and out of the hospital while dying. Since then blood work, scans with increased sites and changes, extreme tiredness. Again back to hospice and the not ready yet was returned. Finnaly I decided to live and live I have been doing along with working a full week and moving on in my live. A few more scans with increased results, but no treatment. CA19-19 up, up and suggestion of hospice, not yet they said. So. decision is to live and let it go. Since then my levels have continued to go up until last summer when then began to come down, and down and down, last month the CA19-9 was 30 lower than after the resection. I called my doctor and they indicated that this was good and is a scan scheduled? (very expensive and this has taken a toll on finances to point of possible bankruptcy. I shared with the nurse no scans scheduled and that the last one they thought I was developing a reaction to the agent. Thus no scans scheduled. The nurse told me to continue to do what I’m doing and let them know if I need anything. I’m baffled and don’t understand these findings. Any feed back direction would be appreciated, Also on the exhaustion and food for someone not in treatment. Bless you all your in my thoughts and prayers. Wisdom