This video spoke to me
Its a pretty good summary of what my life is like- day to day, scan to scan. I have good days and bad days but I cherish everyone of them.
Not much to report here except that we decided to keep on my current medication through the end of summer. Then we will think about dropping one of them, most likely the Xeloda. I have side effects that some people probably would not tolerate on a day to day basis. I tolerate them because they give me peace of mind. The drugs have done their job and are keeping my disease at bay. That makes all the diarrhea, nausea, itching, skin peeling, fatigue worth it.
I am due for my next brain scan in early August and will repeat a full body CT and bone scan sometime in September. I will also have another echocardiogram somewhere in between. I live on my 21 day cycles now 14 days on Xeloda and 7 days off. My body has a pretty consistent reaction to the Xeloda now and I can reliably say I am fine until day 9 or 10. Then, I just gut out days 10-14 until I get my week off to recover. All very doable. My family is getting accustomed to my medical rhythms as well. Hoping that i can continue on these meds for a while, but like I said, we will reevaluate in the fall.
Enjoying the summer off with the kids. We are keeping very busy.
Wishing everyone well.