While the Super Bowl is always an event worth watching in our house, this year I have no investment. I don’t have a preference on who I want to win. I do feel that the Patriots may be the NFL equivalent of Alabama in NCAA; many people are tired of the Patriots winning similar to how they are tired of Alabama. When you are good, you are good. It’s as simple as that. In other news, I go to Tampa this week to find out my fate for the next round of treatment. People often ask me how I’m doing, how I’m feeling, if I’m ready to go to Tampa, etc, etc. All very valid questions, and I’m always happy to answer them. I do notice that when people ask me how I’m doing, and I say, “I’m okay,” they tend to pause…as if they were expecting me to say, “I’m good!” Then they are surprised that I just said okay and they don’t know how to proceed. One of my close friends will ask have the following sequence with me:
D: How are you, friend?
A: I’m okay.
D: How are you really?
A: Ehh. I’m okay.
D: What do I need to ask you so you will give me the real answer?
This is my response…I don’t really want to get into it with EVERYONE I come in contact with about how I’m really doing. If I were doing well, then it would be an easier response for me. When I don’t feel badly but don’t feel great, it’s just easier for me to say I’m okay. Lately, my energy has been better, so that is encouraging. My pain level has become more manageable because of some of my medicines/oil/etc. It has taken me some time to learn when to take what and how to take it, but it does seem to be helping a bit. When people ask, I just don’t always want to get into all of that because I probably answer that question at least 10 times a day. Sometimes I just want to say, I’m okay and keep the ball rolling. Plus, it’s not super fun to talk about not feeling well. If I were feeling well, then I would happily say it 10 times a day…that just isn’t the case for me right now.
So, a trip to Tampa is coming up this week; I’ll do a CT scan, blood work, meet with my doctor or PA and also meet with a pain management physician. I am expecting to find out what my next treatment plan is because I doubt they will let me take another 2 months off from treatment. I am looking forward to knowing what is next because I’m a planner, but I’m not looking forward to being back on treatment. Treatment could be some type of chemo, injection, radiation, or some other magical concoction that seems promising. All options should help in shrinking my tumor(s), but all options come with side effects. Typically, the side effects include fatigue and nausea, so it’s hard to get excited knowing I’m going to be tired and feel like vomiting in my near future. One good thing is that there is a treatment that involves injections called PRRT that just got approved in January by the FDA. That will now be more readily available, and it seems that it might be a possible option for me. I don’t know TOO much about it, but I know that it would be about 3 to 4 treatments (each treatment would force me to be almost quarantined for 6 days), but then I might be able to not need treatment for 3 to 4 years!!! THAT sounds incredible! I would take feeling like butt for about a month total in order to get 36 or 48 months off of feeling decent!
Bottom line is that I trust my doctors, and I believe they have my best interest at heart. I will go with whatever they think is the best option for me because they are the ones with the medical degrees, and they are the ones that have spent their careers specifically focusing on neuroendocrine tumors and how to treat them. Mike is going with me, so it will be nice to have some one-on-one time with him. We may even try to squeeze a well deserved dinner date into the trip. I am trying to do a better job of carving out time to type, so I will do better at making more frequent posts to keep people afloat. I do want to take a second to say thank you for all the support I received from my last post. Everyone who reached out was very kind and supportive and found my humor, which is what I was hoping would happen. I am happy to report that not only have I not throat punched someone, I haven’t felt the need to. The only time I got super annoyed is when someone from insurance called to discuss my healthcare and said they only needed 10 minutes of my time but kept me on the phone for 36 minutes asking me annoying question after annoying question. Towards the end, she asked me if I checked my blood pressure frequently, and I impatiently told her that I’m in a doctor’s office a lot and they check it every time! It’s always good! It’s probably bad right now though because I’m getting stressed out by your annoying questions that are not taking only 10 minutes. Everyone deals with this sort of thing though, so I know I’m not alone.
Enjoy the Super Bowl! Hopefully this game won’t go into overtime like so many other great games have this season, which keeps us all up late and makes us tired all week long. Mike and I will be off to Tampa in a few days, so stay tuned!