We have a very long layover between our games today so we decided to go to Sportschek to look for some shirts for Olivier. Xavier is sitting on the bed laughing hysterically now because of our shopping experience. He is telling us that when he was younger he did not like having shirts with logos because it wrecked the symmetry of the shirt. Olivier does not like blank shirts that have no logo because he does not like looking like an NPC, which stands for nonplayable character in video games. He thinks that blank shirts make him seem like a background character in a game and he has main character syndrome apparently. He is extremely picky about the material of his shirts and it has to be just right, and it needs a logo of some sort. It does not need to be big, it just has to have one. I am not a fan of big flashy logos and tend to not buy clothing that has large logos on it. My preference is to not be a walking billboard for companies. Today we have spent the day relaxing in our hotel room doing nothing. Mel and I took a nap in the afternoon for a couple of hours and we are just lounging now trying to decide what to have for dinner. This morning walking up and down the stairs at the arena was a bit tiring for me and I think that I am going to try and avoid walking too much. I used my walking stick which helps out with some of the movement inside the arena as it gives me some additional support. Eating this weekend has been interesting in that I can not taste everything and certain textures are throwing me off but it is not as bad as I would have thought. We bought more of the basque cheesecake that we got yesterday as it was quite delicious and we are now just trying to figure out where we want to go eat for dinner.
There are only 2 more years of summer hockey left for the kids and something that they had said was that they wish that they could just play with this team during the year. The kids all get along and they just have fun with very little pressure to do anything besides enjoy themselves. We get a lot of comments about the jerseys and our gear as it is quite flashy. It is remarkable at how quickly kids grow up and then soon enough they are out of the house. Growing up I remember a period where you do not want to do anything with your family and you are too cool for things. You do not want to hang out with your parents. Xavier is like Mel, who is an old soul and I think that he enjoys being around adults and playing card games, gambling on the stockmarkets. Olivier I think will want to chill and do his own thing and will pull away for a bit. Without Olivier at the hotel we do not need to keep it as cold, and even with the current temperature of the room at 75 degrees fahrenheit my hands are freezing cold. His preference would be to have the room at 16 degrees celcius, but he is staying with my parents and learning how to cook with them or hanging out. He sent a message today asking if we had milk. I am sure that my parent are buying us groceries and god knows what we will end up with if Olivier is with them. Last night he called us at the hotel to get confirmation from Mel to my parents that he is allowed to stay up till mdinight and that he can have fans blowing directly at him. Mel confirmed and my parents still questioned her parenting. I am curious if they let him be though.
After the second round of treatment a pattern is establishing which I am not sure if I like better than the other one. The neuropathy is not as bad, and I do not have extended fatigue over multiple days, but what I do get is extreme fatigue one day followed by lack of sleep. Of course with the other treatment I had multiple days of crash afterwards and so far this treatment is much easier. I really like not having the bottle around my neck for multiple days as it was a pain in the ass to do things. Lack of showering was probably the worst part of it and I could not take baths with it on. I have far fewer limitations with this treatment. At the cancer center and even when I talk to people a lot of questions I get asked is how long do I get chemo for, and the answer is forever as long as it is effective. I think that is the hardest part for people to understand is that generally there is some sort of an end game for the chemotherapy, but for me the chemo is preventing the cancer from progressing. As long as we do not see any further progress than I am going to get treatment. When the current treatment stops being effective we switch until we find something that works. I do not find the treatment is too bad, but I understand how it could become too much over time. I just see this all as an experiment and data points on how to adjust to different situations. Maybe eventually they will be able to come up with a cure. A lot of people send me various information or potential treatment options but generally most of them are not viable. The main reason is that most of the literature out there targets some sort of a tumour, but I do not have a tumour or a mass, it is all diffuse within the abdomen walls, except it is not showing the normal signs that this type of cancer normally does. There is no visual or biopsied evidence where we can pinpoint where it is, we just know that it is there in some amounts somewhere and we know that the treatment is working. It makes it difficult to treat and as long as the next two cycles are stable and I do not have any adverse reactions then we will most likely go back to Spain to get my abdomen sprayed again.
Q