I saw the physiotherapist from the hospital yesterday and we started to develop a plan to try and put on some more muscle. It is difficult because I can not eat very much, so we need to figure out a way to increase muscle to core muscles, but not expend too much energy. It is a fine balance. While doing some exercises I realized that it also requires a lot of activation of my core. There was no pain, but I notice the stretching to where my scar and radiation were. It is a nice perfect rectangle. A couple of weeks ago I was telling my kids that i am going to tell everyone that I was am experimental baby from a test tube so that is why i do not have a belly button. When you are born in a test tube you do not need an umbilical cord. Xavier was amused with this and I know that he will go along with it and spin it quite well. I am supposed to not lift anything more than 10-20% of my body weight. It is quite the change to what I have done in the past. I am also only supposed to work out 2 or 3 times a week.
My parents, Mel, and our family are always concerned with the amount of food that I eat. Everyone makes comments about how little I eat. A quarter of a cup is not a lot of food, and if I push it to 1/2 it still looks miniscule. I know that Mel looks at it and is concerned with the amount because she knows that it is not a lot of calories. From my perspective if I can get 200-300 calories in one sitting it is good for me. Everyone else thinks that it is not enough though and we get into some arguments about it. Eating is tough. I do not really feel hungry but I need to make sure that I eat every couple of hours regardless of whether I am hungry or not. If I am not eating I should be drinking or consuming calories somehow. Yesterday it was a pretty good day and I was able to eat without too much difficulty. The key is to not eat until I feel anywhere close to feeling full. Once I feel full then it is a bit too much. I use to be able to eat 8 or 9 times a day, but right now it seems that it is more like 5 to 6 times. If the ascites get too much then it may lead to me getting the fluid removed at some sort of a frequency. My cousin was getting it done every two weeks, but it was not enough. He also visually had his stomach extended out. I am not at that stage yet and i am trying to visualize the reduction of fluid in my abdomen and try and keep myself at a comfortable state. The dietitian is happy enough with what I am doing for food intake as people in my situation struggle quite a bit. The fact that I have normal intake is a win from their perspective. I can handle it with conscious effort and I think that I will be ok. We will need to balance out exercise and eating to make sure that the two are in balance and I told both the physiotherapist and dietitian that this will be an experiment and it should be fun.
Within the next couple of weeks I should be getting scheduled to get a port inserted into my chest. Hopefully they call me to tell me that I am going to have the procedure. It is a an outpatient surgical procedure and I remember when I had the PICC line inserted I felt the whole thing, and it was not very pleasant. I felt the whole thing as they were inserting it. Hopefully this time it is not as bad as that. I had purchased things to keep the PICC dry while showering and I have not figured out yet how to keep the port dry. Looking online it says to wrap it to prevent it from getting wet. There are things like AquaGuard bandages or LiquaShield that people recommend, but they only last for a couple of minutes and then they do not stick as well after it gets a bit humid. I might just stop showering altogether and just pretend that I am a peasant from the medieval days. I would get Mel to give me sponge baths daily, but she helped me out with when i was hospitalized and it is not as pleasant as you would imagine. Mel never went to school to learn the nuances of giving a sponge bath. She is pretty good at being a PSW, but her sponge bath skills are average and not exceptional like everything else she does. I suspect it is because she does not have a lot of experience with it. Others have said that after the first week or not getting it wet than you can shower like normal. I think that I will end up having this port in my chest for the rest of my life. I will need to go in for chemotherapy/immunotherapy at some frequency for the foreseeable future to keep it under control. At some point I should consider figuring out how to replace my body parts that are failing with titanium replacements and become a cyborg.
I use to frequent the cancer forums to see what people did for things and it is interesting the perspective that people have. A common theme is to telling everyone to not look up information about your cancer type online as things progress and it is not always up to date. The discussions on it are very sporadic and people comment and then stop and you can see posts months if not years apart on it. A common theme though is fear, especially with digestive cancers as they do not have a great survival rate compared to other types. That is an emotion that I do not think that I have though. I see it as a challenge and the difficulty associated with it is not something that worries me too much. When I understand cause and effect, then what it boils down to is testing conditions to see what happens. And as Xavier would say if I encounter any problems, “Be Better.”
Q