Update 26

Update 26

Chemo infusions:  9 down, 1-3 to go

Last week I explained that because of the gradually increasing neuropathy in my fingers, my oncologist was thinking we would lower the next two doses by another 20% and then stop at 10 chemo treatments instead of the original 12 planned from the beginning.  During the past week I didn't feel like the neuropathy progressed like it previously had each week (a tiny step worse each time); it seemed to hold steady and I had to be honest about that when meeting with Dr. Soule (whom I now affectionately refer to as Chemosabe) yesterday.  

The routine of investigate-->  evaluate---> revise the plan was established long ago in this process so it doesn't phase us anymore to think we know what's going to happen only to have it change. It's all tentative and that's okay because we know this leads to treatment that is tailored to my specific needs and that's just the kind of care I want. Instead of stepping down another 20% this week, we held at the same dose I had the last two weeks (20% less than I received the first 6 times) and I am not going into next week thinking it will be my last treatment. If things go about as well this week as last, we'll keep going towards the goal of 12 chemo infusions total. 

Whether I have 1, 2 or 3 treatments left, the end is close!  I have soft hair growing back in ever since the 20% reduction from the original dose.  As I mentioned, the neuropathy is unchanged.  My sense of taste has been compromised and very few things taste how they should to me.  I have developed a few mouth sores and my nose is bloody every day. My energy level hasn't been great over the last week but my parents are wonderful about filling in all the gaps; they get the boys to and from school, take them for haircuts, take care of them while Joe and I meet with teachers, etc…  We couldn't do this without them; we appreciate tremendously the luxury of having two additional adults keeping us on track.  It's still a roller coaster but we're all able to hang on for the ride.