I am so tired today. This whole week I have had to rush to the door everyday for various deliveries of things. It makes me tired and coupled with the severe neutropenia or if it coming from the bone marrow. Regardless it has affected far more than I had anticipated. I have been avoiding people today and we were going to go to Costco tonight to pick up some things, but at dinner I told Mel that I was too tired to go. There was nothing urgent that we needed. I had wanted to shower tonight and that is a bit of an ordeal and by the time we got back from Costco I thought it would be a bit late. Over the last couple of days I have chatted with several people, that have good intentions but it is not helpful and kind of really messes with my head a bit. Telling me inspirational stories about cancer survivors who started eating better and focusing on their health may seem positive. Or if I eat more I can more energy is so extremely deflating mentally and reinforces that people do not understand the day to day difficulties. Most stomach cancer patients wither away because of the difficulties associated with eating. The issue is that it is not one cause but a multitude of them. The first one is taste and texture changes that make food so difficult to eat. A lot of times I still suck it up and eat fast and swallow because it is a matter of survival. When you get past that part you have the stomach size which makes it extremely difficult to actually eat. The limitations are different than if you are normally full from a meal. If there is no room for the gastric acid to do what it needs to, you throw up. It starts with the gastric fluid and then moves onto the food itself. My stomach is the size of a golf ball and I have probably extended it as much as I can to about 1/2 to 1 cup of food depending on what I am eating. Those are the easy things that I have a bit of control over, what comes next is ascites build up in the abdomen that shifts organs and takes up valuable space. Day to day it is not easy or enjoyable to eat. I can taste more flavors on certain days, but for the last year or so since I have started the treatment the number of times where I would say that eating was enjoyable is less than 1%. All that I hope for right now is food that is tolerable. It annoys me when people tell me that I should eat more, eat healthier and work out. I love my friends and family, bit when I hear this it is like helping me that I am not trying hard enough and I just need to do something easy like eat. Sometimes when I eat the food tastes metallic and the texture is like eating crushed bones. I should save some bones the next time we have ribs and only partially crush them in a blender and let it ferment for a couple of weeks and then question why people do not think it is delicious. That is the easy part, we will then have someone sit on their stomach applying various degrees of pressure and ask why can they not eat more. As soon as they have food in their mouth, squeeze the abdomen. I use to eat because I enjoyed it and would think of the next meal at soon as I was done eating. Now I eat to survive and think what can I tolerate.
I use to share an office with a friend of mine at HSN and I would be a bad influence on her. I liked Twix and so did she, so I told her that I only liked eating the left Twix, that it tasted different and we would split and share. They other day, Olivier had asked Mel if there was a difference between the two and she told him no. She has clearly not seen the Twix factory commercials. Mel also did not know that I liked cookies and cream chocolate bars. Though when I had some last week it was not the same. Since i have had no treatment this week and I have been rinsing my mouth at least 8 times a day, my taste buds are not as aversive as they normally are. Hopefully that will be fine for this weekend as we go to Ikea to grab some final things. We should also do a quick stop at Nations or T&T. There are some food places that I would like to try out and we will see if we get a chance to go there. I should also pick up some treats for some of the teams while I am down there. My mother in law brought home some blessed bagels from Ottawa. At least I hope that she got them blessed by the nuns. It seems like the logical thing to do.
Carpet has been installed every where except the stairs, and Xavier’s exercise equipment has been returned to where it should be. Hopefully I can get my desk assembled this week as I am sure that will take a couple of hours and then I need to setup my monitors and all of the accessories so that you can not see a cable or a wire. Mel has explicitly told me that those were forbidden and she did not want to see. We will be returning the mattresses that we bought from Ikea because they are not firm enough. My parents bought me a firm mattress when I was in school and Mel realized that she in fact does not like soft mattressea and prefers something firmer. As I am tired and we spent more money today on furniture I am going to prepare for bed.
Q