Today was not what I expected, although Dr. Nicholas did mention that it is what thy may tell me...
Started the day off having to drink a barium drink that looked like milk and tasted absolutely disgusting. and it's a huge glass unfortunately... They even give you a straw.. I dont know who in their right mind would even use a straw... UGHHH. Cat Scan was quick and went well but then barium started giving me side effects like nausea and horrible cramps and diarrhea. Wasn't fun. Came back to the hotel after appointments were done and slept 3 hours which I needed.
Next we went to appointment with Dr. Gupta for 1130. Didn't see her till about 1230 and she came with Dr. Gladdy so 4 pm appointment with her was cancelled. If we would have known we could have went home tonight but unfortunately my train tickets are non-transferable. This is the news they gave us, the tumor has gotten smaller and is less active than original scans (YAY!!!!!!!!!!!!!!). Very happy about that. But the bad news, (some of you may not think it's bad but I will explain why I think it's bad) is they don't want to do surgery. They are deeming it too dangerous. They want to do monitoring scans every 3 months only. The problem I have with that is that there is still "live" cancer cells in my body. Even though they are not "active" right now, they are still in there... Plus, I am still in a lot of pain, and they want me to try to come off the pain medication. How when I am still in pain????? They are trying me on gabapentin because they think it may help with the nerve pain part of it. They also do not believe that I will ever get full strength back in the left leg due to the extensive damage to the femoral nerve and wants me to do some physio therapy and start using a cane :(. I still get weakness sometimes where my leg totally gives out on me and they said due to the radiation to my pelvic area, the chances of hip fracture are a loooot higher with radiation. Even a little fall could cause major damage. I don't want surgery, it scares me but at the same time, I'd rather have surgery then know that I have live cancer cells in my body that may flare up at any point? What would you do in my situation? Dr. Nicholas mentioned to me that if they did not want to do surgery that we would definitely look for a second opinion... I think I may look into that in the New Year and just take a break for now or I may book an immediate appointment. I have so many questions, but felt so rushed here. At least with Dr. Nicholas I feel like I can ask questions and get answers, besides I trust him more than any of the other doctors I have worked with, Don't know why, maybe because he seems to be more caring? He did say if I felt I needed an appointment before the New Year to go ahead and make one. I think I may. Just to help put me at ease. Answer some questions. I will keep you guys updated.
I am not sure what to do, one on hand, I was really hoping for surgery even though I was scared. This "lump" is constantly causing me pain and it's very uncomfortable. My back is always in pain and I always feel tired. The lump also affects my appetite (or lack of) because its pushing against my stomach. If it was totally dead, I would feel a lot less worry and anxiety if they were saying lets leave it in. I would live with the pain...
Anyways, Mom and I went for a nice supper out and a little walk. Was nice. Now back at the hotel relaxing and heading home tomorrow. I miss my girls and my hubby and my bed and my city :)