Each passing day it seems that my progression is getting better in some things and worse in others. I think it is expected as the impact of the treatment is cumulative and I keep on trying to push things more and more. Last night I ate twice, at midnight and then again at my usual time of 4:30am. I can definitely eat more now as my favorite 4:30am snack right now is eating a bowl of Chex cereal. Originally I could eat maybe a 1/4th of a cup and that increased to 1/2, and last night I was able to eat closer to a full cup of cereal. Throughout the day it was a bit tricky eating. The pattern is not necessarily consistent for everything. Fatigue is my biggest concern right now, as I eat more I should have more energy, but it seems that I do not always. I am going to try and get more electrolytes into my body and drink things that will help out with that. It is hard to really know how my energy is as I have been trying to conserve it a lot by using the wheelchair or limiting my movements too much. I think that I would like to push it a bit and see how much I can walk around pushing the wheelchair and only use it as a last resort. When we go to Spain I want to have a better understanding of my energy levels and what causes fatigue. It seems that by Wednesday of the following week I feel much better. I will take steroids next week and while we are in Spain. I have had instances of being light headed, but with my increased liquid intake of gatorade and coconut water it seems to be getting much better,
School buses are still not running, which means that the kids have been staying home. We do not have the capacity to be driving them all over town. Mel gets concerned when I drive too much in the afternoon. I will drive Xavier to RHP for hockey because it is quite close, but I tend to not stay around there for too long. Xavier has had quite a lot of appointments via his athletic therapist and his own private sessions. The two of the kids have been helping out a lot with chores around the house. Xavier will shovel or do some of the manual labour in between his workouts. Olivier has been doing a great job with some of the other things such as doing the dishes and keeping the kitchen clean. The two boys make their own meal and are responsible for cleaning up after themselves. It is interesting how we need to force Olivier to go outside and do something while Xavier would spend all of his time doing other activities. Xavier is also oblivious to some things where we were chatting and we said some kids are lucky that they excel at a lot of things. We had to highlight to him that he was smart and quite athletic and excelled at a lot of things. I appreciate a lot of the things that the kids have helped out with at home.
Each morning I get lots of messages from Mel about various appointments or things she has taken care of from my various medical team. The amount of things that she is juggling all at once is astounding. Between her own job, taking are of house, kids, our schedule and all of the coordination between all of my doctors I am not sure where she finds all of the time for it. I actually know so little about what is going on and need to defer to her about a lot of the things. She is quite competent for everything so it helps out quite a bit. I do not have the energy or the patience to navigate everything, but she has learned how to do it quickly and does it so well. She also has the challenge of dealing with me, and I do not think that I am an easy patient. I have a lot of peculiarities nor do I always pay attention to what the doctors tell me. Probably because I just rely on Mel to do it and I can just sit in the background and be confident that Mel has my back and anything that I miss she will cover it. She is a safety net that I rely on now. Henry Ford had called me yesterday and I do not know all of the details of what is happening as Mel as been in contact with them. It seems that the cost of it if things go well is roughly the same as Spain, with the exception that they will keep a 20k retainer in case I am admitted. It is quite a high sum considering that the money needs to sit there on hold that we can not do much with, especially considering the exchange rate.
Q