I am lucky in the sense that I get a lot of inside information relayed to me by my doctors. In this case, my friend mentioned that he wanted to make sure that I did not slip through the cracks and made sure he put in multiple reminders for things. IT is quite easy to see how things can slip through the cracks as I am not their only patient and the staff is overworked and understaffed. If you do not advocate, you may be delayed because you are just a number in the multitude of cases. The doctors, nurses and all staff provide the best care that they can for everyone, and I understand how everyone feels that their case is pressing. Having people inside advocate helps me a lot. I have had several phone calls over the last couple of days outlining the next step of procedures. Something that was of concern for Mel was being told that radiation treatment would not begin until the end of the month. The other concern is initially when we spoke they had said that if it was chemo or radiation treatment then it would most likely be palliative. Now what that means is that they would be maintaining it or preventing spread as opposed to excising it completely. I think that there is some hesitation right now locally to perform surgery because of all the potential risks associated with it. It is understandable as they may end of spreading it out more.
The first time I went through this I refused to stop work, partially because the doctor recommended it, and partially because it provides something for me to focus on. When you allow your mind to drift, you think of the negative aspects of things. With work you have a goal you need to accomplish so that is what you think of. I tend to protect my time better as I need to manage my energy and what I can or can not do. I do not waste any effort or energy dwelling on what I can not do and just think, ok, if I can not do that then what can I do now. The busier I am the easier it is to handle all of this, and there is a lot of knowledge and things that I think that I can accomplish. The issue at hand though is I am more easily distracted right now as I get phone calls and then I spend time processing that information and thinking of different options, or trying to develop contingency plans for everything.
They gave me the initial design for Xavier’s mask and I showed it to them and asked for some minor revisions. I think that we will be ready to have that go soon. I want it done quickly prior to me starting treatment because I am not sure how frequently I would be checking email during that time. I do not have a contingency plan for paying for his hockey. Mel and I have a simple do not ask do not tell policy. It works super well! Except when friends of hers ask how much goalie equipment costs and I tell them not to use Xavier as an example. She will reply they just want to know ball park. The ball park for Xavier is not the same ball park as other kids. I like to buy my love and affection from everyone. That is why I carry around bills, to buy affection from my kids. I had written this before, when Olivier was young and I was going through the treatment he asked if something happened to me who would buy things online for them.
I am feeling much better now with all of the phone calls I have been having. It gives the perception that things are moving even if they are not very quickly. One month has passed since I found out, and every day without knowing what is happening brings anxiety to Mel. Though she has been upbeat mood lately. Especially when she points out how many times she has saved my life. When she does I like to write over the top cheesy, romantic and super dramatic statements professing my love. I use to send it to her work and the people would fawn over the gesture but Mel knows better and rolls her eyes. I am a bit more sentimental than she is though and have kept all of the things she has created for me in the past as well as cards that people have sent me where they have written content that was meaningful to me. An amusing anecdote is that my sister’s friends read this faster than she does and then they update her on it. So if you are reading this, can you relay to my sister that I love her. I tell her every time I see her and she just rolls her eyes at me. It seems that I have yet to buy her love. Damn siblings.
Even with all the chaos and uncertainty that is happening now, we still steal these playful moments of joy. Mel teasing me about things. Reminding me of my mistakes. We went to Costco and i use to wear XL, so I was like I am going to get a large. Mel said medium. Guess who was right. Yeah, I forgot that I got even smaller. I reminded her that I was grateful for all she has done and gave her a really awesome line. She accused me of using AI. Again she was right. This playful banter is much better than worrying about appointments. They will come soon enough and for now let me plot my revenge.