I know many of you are wondering what are the latest news. Ever since I ended the “big guns” chemo, I had been holding my breath until I could get scanned again. I had my PET scan last week. I called my doctor’s office on Friday and found out that the report was sitting on her desk but when I called, she had already left for the day. A friend offered to break into her office to get the report but I decided to wait until my appointment with her on Monday! I was so anxious to get the results, with my cancer marker continuing to go down, I had high hopes and expectations. I felt like the whole weekend I was holding on to an important raffle ticket that could win me a really big prize. Instead of repeating my ticket’s number in hope that it would increase my chances of winning, I was repeating to myself these 3 letters over and over N-E-D, N-E-D, N-E-D – (no evidence of disease), this was my mantra all weekend… Monday finally came around and we met with my doctor to get the results. She handed me a copy of the report and the term “stable” jumped to my face. There was little change from the previous scan 3 months earlier. As soon as I read this, I started weeping, feeling defeated, feeling like I had lost my grip on this cancer. I was really bummed and disappointed, I wanted to hear that it was gone, all gone and that I was in remission. My husband and I understood that the cancer was inactive but still present. My doctor tried to tell me that I should be celebrating and told me that I was the “only one” not happy with the results. Truthfully, we were confused and not sure what this all meant. We were then very thankful to have an appointment with the extraordinary specialist at Shands today.
After a three hour trek to Gainesville and waiting almost 2 hours to see him we got the answers to all our questions and left his office feeling relieved and a lot more optimistic. Dr. G had met with the tumor board prior to my appointment and the multidisciplinary team had reviewed all my results and scans. Here are the most important points:
– He was very impressed with my results and told me I had exceeded his expectations.
– Yes there is still some activity in the liver but none of the tumors lit up – with my cancer marker being so low, he believes that the activity reflects “healing” and went on to explain that this is typical results – the cancer marker goes down first then it takes a while for the liver to heal hence the low grade activity seen on the PET scan. This is normal and expected, not a sign that my progress has stalled.
– He believes that 95 to 99% of the cancer is gone.
– The colon is a little bit of a concern as one point was still lighting up slightly – the hope is that maintenance chemo will kill the rest or at least keep it in check.
– The goal is to let my body recover from the intense chemo and let it continue healing. He said I was very close to being in remission.
– I will continue maintenance chemo and we will monitor my cancer marker closely and will do CT scans regularly. If things continue to improve, they will consider taking out the tumor in the colon in about six months… Right now there is nothing to zap on the liver – the tumors/masses are all inactive…
This pretty much sums it up – I will continue to do everything in my power to help my body heal and rid myself of the 1 to 5% of the remaining cancer!!! Time to sit back and enjoy the goodies we picked up from Trader Joe’s on the way home!!!
We are feeling relieved and I feel like I still have a grip on this wild beast! I’ll be writing more soon!
The marathon continues…