July will always be hard for Carmen (and me because I do all the heavy lifting). The 19th is Olivia’s birthday, the 23rd is mine, and the 29th is Audrey’s. My birthday became an afterthought ever since Olivia was born. That’s ok. I always look forward to cooking ramen for myself on my birthdays.
This July was especially difficult because of our Hawaii trip. Not to complain, but we were unwinding from the trip for a few weeks. It took us some time to gather ourselves after we had returned. But life goes on, and so do parties. Olivia celebrated her 7th birthday on the 19th, but because we ran out of time, we decided to throw her a party on the 29th, which was Audrey’s first birthday. Can’t do 2 birthdays at once, especially the first birthday party, so we decided to postpone Audrey’s party by a month.
Carmen has been doing well except for the cramping that seems to be getting more frequent. I began tracking the onset of each cramp as well as the severity. There was indeed a pattern and it seemed to correlate fairly well with the timing of each Protocel dose. So we conducted a few “experiments” along the way to test this by changing the timing of each dose. The cramping seemed to follow. It wasn’t exact, but it was close enough to say it might have something to do with Protocel. Her energy level remained high during this period, but each cramping episode drained much of it. We also noticed that during very busy days, her cramping would be more severe and also more frequent. Toward the end of July it became clear that this was going to be an issue. Her pains increased and there seemed to be no end in site. From all that I read about Protocel, pain is not a usual symptom of Protocel. They say that sometimes, the tumors may actually grow for a few months before it stabilizes and ultimately begins to shrink. It’s effects on tumors is much slower than chemo so it made sense that it might grow first. The symptoms she was getting made me wonder if it’s even working. However, it had only been 6 weeks since the start of Protocel. The normal length of time that most people see stabilization is about 3-4 months. With Carmen’s large tumors, we would probably need to add a few months to this projection. The problem of course is do we have that long to find out whether or not this is working?
By the end of July we both agreed that 6 weeks just wasn’t enough time to quit and change protocols. We needed to see the scan even though we were warned that it may appear bigger and worse if taken before 3-4 months. Again, with Carmen’s large solid tumors, this estimate was probably not going to cut it for us.
We were scheduled to see the oncologist again at the end of August for a checkup and to do another CT scan. Since I’m writing this in hindsight I will tell you the results were not good.
So July ended with a nice birthday party for Olivia. Things seemed like they were in limbo as we played the waiting game (not very good at this game).