The past 10 days have been challenging but I am still here and doing ok. Nothing was quite what I expected and any plans I tried to make to adjust to what might occur had to be adjusted quickly to the reality. I do not want to relive the discomforts and you certainly do not need to know the details so the best overview I can give is that everything takes longer than they say and you need to be very flexible and accommodating to change.
I get a 12 day break from the infusions and it seems like the nausea and discomfort are subsiding a bit. (Knock on wood). I had one drama event during the last infusion where I started to have some pain and the doctors became concerned that the Taxol had leaked outside the port. I almost was hospitalized but they let me go with instructions to watch the skin around the port to see if it changes colors. So far, nothing other than the usual pink beige.
I spend a lot of time at the hospital getting infusions. When I am not there, I am home in bed sleeping or watching TV. It is such a different life from my normal one. In my work life I spend so much time on the phone and now I find that even short phone conversations are exhausting and painful. Luckily I can follow the news on FB and Twitter in small bursts so that I can at least get McNewsnuggets of what is going on. But I can't right now do the deep dive--read the articles I normally would read to get the analysis. The other issue I face is what to eat. Much of the time I do not want to eat and my weight loss of 22 lbs. so far reflects how difficult it is to find anything that I am able to eat. Weird to lose so much weight in a month involuntarily when you spend so much of your life trying but not succeeding to lose weight. The silver lining of the otherwise very dark cloud.