Today has been pretty crazy. I had a decent amount of regular life things going on, am still trying to process everything from yesterday and have been making a lot of phone calls trying to get some appointments and get some direction. I called my oncologist’s office and got an appointment for 4:00 on Monday afternoon. I called our cousin to watch the kiddos so that everyone can come to the appointment. I also called the study nurse to let her know about the appointment so that she could be there if she wanted to.
The study nurse let me know that the oncologist had a meeting with them yesterday to get the parameters of the study which apparently does allow for some changes in meds. The study nurse said that her understanding was that I would not be getting any more Taxol but she wasn’t sure if I would be staying on the study or getting completely different meds. Or if there would be anything coming up with surgery. In short, she didn’t know anything but she was able to tell me that the oncologist is working behind the scenes to figure out a new plan for me. Which is nice to know. She stressed that everyone’s priority is my health and staying in the study is not even a consideration. She didn’t want me to think that anyone would hold back anything based on the study or anything else. And I don’t feel that way.
I also called my general surgeon to let her know the situation. She said that if the oncologist is super concerned, she will leave a patient and call her while they wait so they can discuss their plan moving forward. So, since she hadn’t gotten a phone call yet she took that as a good sign. They have weekly meetings on Thursdays as well as a panel on Fridays so she said they would discuss my case in the morning. I told her that I would do whatever gives me the best odds – more chemo, surgery first, whatever. The surgeon was interested in getting some scans to get an accurate measurement which of course I am as well. I assume that this will be on the oncologists “to do” list when we meet as well. I do love both of my doctors and I feel that they will come up with a good plan. I am glad to know they are working on it.
So I have been thinking about things a lot today obviously. In between Fletcher’s speech therapy, closing a Pampered Chef show, taking Fletch to school and watching his Halloween parade, taking the kids trick or treating in Golden, going to my folks house, more trick or treating, having my in-laws come in town, you get the picture. It leaves me in kind of a surreal place yet again. I wasn’t loving the weekly chemo but I think the routine was comforting for lack of a better word. We had a plan and that plan was being acted out. I had a definitive end. Now I’m back at the beginning. I have no idea if we’re talking surgery first or more chemo. If we are doing more chemo, I am assuming that it will start over or be extended from our original schedule. Chemo usually lasts 5 months so having 2.5 months where it didn’t work won’t count towards that 5 months I am guessing. Of course I am basing this on nothing – pure speculation so really just my thoughts. I don’t know. And not knowing sucks. Whatever is coming, I definitely think the “easy” part is over. I think they are going to hit me with both barrels whatever it is. So I am basically just bracing for impact at this point.