Sorry to anyone that has actually checked this blog for an update! I talked to a friend at church today that said they occasionally checked to see if I had posted an update, so I decided to make one for him and anyone else that is wondering how I am doing.
I have been feeling really good this summer. In January, I stopped one of my IV chemo drugs due to some minor neuropathy I was having in my feet. I continued one IV chemo drug until the beginning of May, getting treatment every other week in St. Louis. I was feeling very run down and not really able to feel good before it was time to get another treatment. Because I was feeling this way, I decided to stop IV chemo and just feel better, and enjoy life with my family. My doctor said it was fine to stop. He wanted to see what my scans showed on July 1, and then decide what to do next from there.
My scans were mostly stable. The large tumor in my liver, the spot in my lung and the enlarged lymph nodes were all the same. There are 3 or 4 smaller tumors in my liver that were slightly bigger (their total size is less than one cm) and one possible new one, also smaller than a cm. He told me that he wanted me to experiment with the oral chemo I tried last summer and wasn't able to tolerate. He gave me permission to experiment with any dosage and try and get some, as it would be better than none. The small time I did take it last summer showed a shrinkage in the large tumor in my liver. So, July 29, I started taking the lowest possible dose one time a day. Tomorrow will be 2 weeks taking this dose. I feel pretty good, just a little tired and some evenings I feel nauseated. I go back to my oncologist on August 13 for bloodwork and a check in. This drug does raise my phosphorus level, and I may need to take a break. My plan is to ask if I can take this dose for 2 weeks and then take a break for awhile, take it again for 2 weeks, take a break, etc.
I feel like this is a plan that I can live with, getting a break from feeling tired and run down, then enduring it again for a short time. I also continue to get the stents in my liver replaced every 10-12 weeks. Next procedure is September 6. This keeps my liver functioning and the bile flowing, which is the most important thing for me right now.
I have totally exceeded the life expectancy of most people with my diagnosis. Many do not live a year past diagnosis, and my year anniversary was March 1. Many are unable to tolerate the chemo I took for almost a year for longer than 6 months. I feel like God is blessing me with more time, and for that I am most grateful. I just celebrated my 56th birthday. Last year on my birthday I didn't know if I would see another one. I am living life thankful for each day, trying to enjoy the little things. I'm enjoying my kids and grandkids and looking forward to Greg's wedding on October 27.
I should have scans around the first of October. If you're praying for me, please don't stop! I know that all the prayers have kept me here and feeling as good as I am. I don't take them for granted and appreciate them so much. I will try to be better at updating... I love you!
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