I have not felt great this weekend, and Mel keeps on trying to help me out with various things but it is difficult to describe. Unless you have gone through cancer treatment it is difficult to explain to other people. You do not feel like yourself, but it is difficult to pinpoint exactly what it is. Mel thinks that I am a bit more lethargic or tired, as this is similar to the drugs that I had in Spain. The interesting thing is that I would say that this treatment is easier than what I was on before, but the effects are different. With the other treatment, the side effects were more pronounced physically, while this one I think impacts me far more mentally than the other one. You are off just enough that it is disconcerting. The neuropathy is quite manageable, the loss of taste is nowhere near as bad and it is just some flavours. Water is difficult to drink because it has a weird after taste. This morning when I had hot coffee, it tasted really bitter for some reason, and it is the same coffee that I had yesterday. The worse symptom though is the inability to really feel warmth. I do not have a fever as I have been checking, nor do I have cold chills, but the core of my body feels cold no matter what I do. Piles of blankets with heated mattresses and heated blankets provide surface level warmth, but does nothing to remove the chill within. It makes it hard to rest as you can not get really comfortable. I sleep without moving because it seems to reduce the coldness the most as it no longer radiates. If I move around my feet and hands get a a tingling sensation. It is not painful, but it radiates an inner coldness throughout my body. The difficult part I think mentally though is that I know that it gets worse for a couple of days before it gets better. With the treatments closer together now I do not have that 1 week reprieve where I recover. The timelines are more condensed now where the impact is nowhere near as bad, I will sleep 2 hrs, 4 hrs, 6 hrs and then I am better, but then treatment begins again within 3 days. Mel thinks that I should tell the doctors to see if there is anything to help out. The drugs that I have for neuropathy are fantastic. There is nothing that I can take to help out with the loss of taste. Textures against my skin can be irritating. If I try and sleep without one of my caps that I wear it catches against the pillow ever so slightly and pulls. Small annoyances and irritations that just compound. When you are sitting there at night and you can not remove the chill from your body it starts to get inside your head. It is sunmer now and it has been a hot enough summer and I am feeling cold, what I fear is what do we do when it is much colder outside. My wheelchair is not a 4 season wheelchair and is designed at best for 3 seasons. Our parking lots are not always plowed well, so I am not sure how that will work for me when we get to that in the winter time. The loss of control is what probably bothers me and gets to me inside my head. Things are difficult and during the day I can handle it fine, but by the time the night time rolls around I have been finding it much more difficult to deal with. I am not sure what the next day will bring and a night’s rest is not a promise of rejuvenation. The weekdays are not as bad as my days and nights are filled and I do not have as much time to think about things.
With all of that being said you need to look at things from a different perspective. The drugs that I am bring provided are having some sort of an impact on my body that is hopefully working. For the most part it is keeping the cancer at bay, and the symptoms that I am facing are under more control physically. I need to focus on the positive aspects and not worry about things that are outside of my control. I have a lot of gratitude for what everyone does to help me out within the house itself. Everyone tries to limit me from overextending myself. If I ask the boys to bring me a glass of water, no one complains and will do it without question. Any assistance that I require from my family is done without hestitation. The difficult part for me is as more and more time goes on, it feels like in a lot of things that I can do less, even though there are things that I can do more of. It is a balancing act of regaining strength while not expending too much energy. For every forward progress that I make, it comes at an expense and that is the fine line that I am walking now. For every 2 steps forward I take, there will be the consequences of 1 step back. There are all sorts of things that I would like to do again, like go on a hike and see waterfalls and fun things like that, except that they are not all accessible, so I need to build up strength so I can go on my own, or have Xavier carry me on his back.
Last night with the boys we ended up watching 2 movies in a double header, we first watched Tokyo Drift and then X-Men. The kids originally wanted to watch the Matrix and then they watched some trailers and some clips and decided that they did not want to watch it anymore. I decided to turn it on and watch it this afternoon as it was a movie that I always enjoyed and I totally understand why they did not want to watch it now. The movie was cutting edge at the time and some of the effects and shots seem much more dated now. I always loved Tokyo Drift, but by no stretch of the imagination would you say wow, that is an amazing movie. It was an enjoyable movie and Mel’s first comment was, the acting and story are not that great. What do you expect from the Fast and Furious franchise though. X-Men was interesting to watch because I knew that there were scenes that were filmed in Canada and at first they dud not believe me about the scenes at Science North until I brought up filming locations and then they believed me. Mel made me rewind so that she could see it and confirm it. Olivier wanted to watch another movie this evening, but Xavier struggles to sit there and watch movies. He wants to be active and do things instead of sitting around. At the end of the movie at 11pm Olivier was hungry and he just wanted to eat all sorts of carbs but Mel told him it was almost bed time and he could not eat things like that. Xavier wanted to eat something and Mel said he can because he was so active while Olivier tends to live a far more sedentary lifestyle. This entry today lacks the levity of a lot of my other posts, but I think it is important to capture shifts in moods and how long it takes to recover as opposed to sugar coating things. Every once in while things are tough and I need to make sire that the frequency is sporadic as opposed to the norm. The good thing though is that as I write, it helps me with my mood as I have captured mu thoughts and then I can move on. We will be making hot pot for Olivier today and I think it is going to be quite the experience. Mel is cleaning up the cupboard and adding in all of the spices. I think that I am going to install the humidity sensor soon with Xavier in the washroom because the kids do not always remember to turn on the fan. It should be fun.
Q