Treatment #13.....NOT!

So it started last night. We arrived at the hotel around 8 PM. I go to check in and the guy says, "Well it will be about 10-15 minutes because they are cleaning your room. I can check you in now and then you can come get the keys from me when it is ready." I said, "Can you just give the keys and then call me when the room is ready so I can just wait in my car, I cannot breathe." Apparently, it is a liability to give out keys before the key is ready. I explained I was not a serial killer, to which he replied, "I didn't think you were but I cannot give you the keys. I will bring them out to your car when the room is ready." Apparently, this was the last room available because I even asked what is the next closest room to the elevator that you can get me into now and he said none. I left irritated but about 10 minutes later, he brought us the key. In good news, he did put us in a room next to the elevator. 

Today, mom and I spent the day at Mayo. It started with a CT Scan. When we got to the check in desk, the line was unbelievable. I sat and caught my breath, while Mom waited in line. When she got to the front of the line, I joined her. They checked me and moments later took me back to the scan, which was good because it was 10:50 (my appointment was at 10:35) and I had lab work at 11:20. The nurse told me not to worry about the lab work. He was able to use my port to set-up the IV for the scan. As he was taping up the port, he kept apologizing for touching my upper chest. I told him it was fine but it was nice he was thoughtful. We left the scan at 11:50 and headed down for lab work.

Gone are the days that I can walk from one building to the next, even though they are all connected with hallways. Mom went and got the car, drove me to the building next door, dropped me off (with my walker), and then went to park. I headed to the lab. It was 12:10 at this point. She said, "There is no one here to draw from the port, how do you feel about a blood draw from the vein?" I said, "I do not feel good about that. I said my port has been accessed, I just need blood taken from it." She explained they were all at lunch and would be back at 1 PM. She then said, "You were late for your appointment, you were supposed to be here at 11:20." That was it, I said, "I was getting a CT scan and had no control over that." She asked if I wanted her to ask the nurse at 1 PM, I said, "I do not know, I am very irritated" and I walked to the chairs to sit down. I went to message my nurse but the woman came over and said if I waited until 12:45 PM, they could get me in. I waited but I wasn't happy. Turns out they only have one nurse who can do it and they do not cover her during lunch. What a ridiculous system! 

 We got lunch and then met with my palliative care doctor. He is awesome. First, he was at the other building wondering where I was and then looked up in the system to see they scheduled me for his other office. He ran over to meet with us. I thought his location was odd but didn't question it, guess I was right....again! He went through all of my side effects and has prescribed a new cough medicine to try. He say he doesn't know if it will work but he is hopeful. He appreciates that mom and I laugh a lot and commends me for still working and my positive attitude. 

We headed over to the other building to meet with my oncologist. The fellow met with us first. Unfortunately, the news was not good. The cancer has grown. This cancer grows in the lining so it is not easy to measure growth but in the scans you can see thickening around the lungs and the abdomen. Since there is growth, we are stopping the immunotherapy treatment. My doctor joined us and gave us his condolences for the news. He said he always liked seeing me but knew I didn't feel the same. I actually told him that I liked seeing him, I just didn't always like what he said. He has reached out to the clinical trial team to see if there is something I can join. Tonight, he is planning to reach out to colleagues to see what they know. He wants me to reach out to Dana-Faber to see what they might have going on. Lots of calls to make and then next week we will talk to see if there is anything. If there isn't, he will put me on chemotherapy again (different drug) until we find something. He told me he would be honest with me if it was the end and if out of options. He was very clear, we are not there! He says he is proud of me with how I am handling treatment and the disease. He also made sure that I understood he is treating me with cancer rather than just treating the cancer. His goal is for me to have quality of life.

It will be a long week reaching out to people but hopefully we will get some good options coming back. 

I know that everyone's thoughts and prayers are what is fueling my strength while I fight this pesky disease. I appreciate everyone. I could not get through this without my warrior team of family and friends. Thank you! Plan A and B didn't work so now we are on to Plan C, just not sure what that is yet. I remain every hopeful Plan C is the winner!

 For tonight . . . I'm just sayin' XOXO