I am so tired today. I have been getting up in the middle of the night around 4am with neuropathy pain in my heel. The pressure on my heel just hurts and it makes it difficult to go back to sleep, I can shift around and the position that I was in before helped, but it has not been as great lately. I do not want to take sleeping pills either as they are not guaranteed to work. I was up in the middle of the night some other times that it took them. It has been a very tough day for me as the doorbell kept on ringing and I need to rush and hurry there because they just keep ringing and knocking till I do. The energy expenditure to get there is high and results in my heart rate shooting up above 100 for a sustained period. I am then out of breath and sore because of my side. Right now I am not sure if having this tube is a better solution then getting the temporary one. We will see in a bit if it is worth it, but at the moment I am not sure. I tried to take a nap but then I received a phone call that pharmacy supplies were being dropped off when I was planning on napping. The new desk that I ordered should be arriving at some point in the next couple of days as well. We still have some things that we need to organize and pick up and we should get organized to do that in the next couple of days.
It has been difficult framing things in the positive lately and it takes more effort for me to do that right now. Some of the symptoms are much easier to deal with then others. I need to see what is within my control and focus on those things. I can do mouth rinse repeatedly through the day which helps with taste, prevents thrush and mouth sores. I can make sure that I am more diligent with putting cream on my feet in the hope that with more moisture they might not hurt as much. If I am up in the middle of the night I should try and drink some of the protein drink to try and maintainy energy. Even with the discomfort I have been able to attend Xavier’s hockey games even though I have not been too impressed with some of his play lately. Olivier is growing up and taking more accountability for things and I think that with time we can get him to help out with more things around the house. When he runs out of clothing to wear he does not blame others and understands that it is his responsibility to make sure that he has clothing to go to school. With all of the disruptions today what it means is that tomorrow morning they can start with the carpet installation and hopefully by the end of the week that is all done. My parents are bringing us dinner tonight and yesterday my sister in law mentioned that I should ask for some clay pot sticky rice. My parents do not cook it in the clay pot as it is more tedious but it is something that I rather enjoy and I can bring it with me to the hospital on Wednesday when I am in treatment. I am also in the top 1% and I just need to get through things as they come and try not to worry about too much. I am doing much better than other people normally do with the cancer I have and instead of focusing on what sucked, I need to think of what small thing can I do to make this a little bit easier. I have been scared of this weekend, but we have so many new things that we are trying that I need to have positive intent and think that it will all work instead of not working. I am going to take 8mg of the steroid on Thursday and Friday and then 4mg on Saturday and Sunday with my sleeping pills the whole time. I am also going to get at home hydration on Friday through Sunday. Hopefully this gets me through the rough patch. I am also grateful for all of the wonderful people around me and the willingness for them to go out of their way to help me, such as streaming the game so that I can watch if I can not attend. No one streams houseleague games so the fact that someone is willing to do that for me is awesome. On our way home Xavier was in the mood for some saucy chicken, uncle we have no Korean style chicken in Sudbury. We opted to stop at Popeye’s to get some boneless wings to make it easier for him to eat. They gave us bone in, which is fine, except they are a bit more difficult to eat in the vehicle. I had one and then on the rest of the ride home I was so incredibly fatigued. I am surprised by how tired I was. I had wanted to wash up tonight but it is an ordeal and I will need to do the same tomorrow night. Mel said she is going to give me a warm sponge bath in bed and then I can shower again tomorrow. As crappy as this day started it ended quite well. Knowing that people will help you out makes things easier. Once I had some coconut water I felt much better and I am lying in bed now super heating the room for when I get washed down by Mel. She never complains about having to do something like this and speaks of it like it is completely natural. Nothing about the last 15 months has been natural, but as I focus on the positive it reminds me that this can be easy if I concentrate on what I can do. For things that I can not do, I have help for and many people who will do it willing and without hesitation. My mother in law went to the convent in Ottawa today and I am sure that she did it to enlist the thoughts and prayers of all the nuns there. They are wonderful people there and as long as I have faith that I can get through this I will.
Quoc Hao