We have a weekend full of hockey and I am tired today. I had quite a lot of difficulty sleeping last night as I had to avoid the weight of all of the blankets while trying to keep warm. Normally I sleep with a t-shirt on and all my sheets but I think tonight I will sleep with a sweater and crank of the heated mattress. I was cold last night and woke up shivering a few times. I did not realize how much food people brought us and as I was going through some of it today some of the food takes 3 hours to cook so we need to plan that accordingly. I had hoped to attend multiple games tomorrow and watch the game before me but I am not 100% sure I can. It is a bit different than when our team plays as I can relax.
Our team blew a 2 to 1 lead and in an uncharacteristic manner Xavier let in 5 goals in the third period while we ended up losing 7 to 5. The penalties were a bit lopsided and at one point we had 4 or 5 kids in the box with our coach kicked out. Xavier blames himself for the loss and knows he did not play up to par. I knew things would be bad after he let in the second goal to tie it up in the third. He kept his head down and looked all depressed. It was a weak goal. I have told him repeatedly not to do that as you are telling your brain you are defeated and projecting that to your team and their team. You are playing head games with yourself and projecting negativity. He normally does not do that and he was arguing with me that he did not do it. I have a 30 second clip showing otherwise. He was tired though and came into the vehicle sweating and exhausted. He needs to learn to project confidence even when he is not. That is something that I had to learn how to do when teaching in front of a class. You need to show confidence and be the expert in in the room. I think that now i have learned to project confidence and it was much easier when I had my size as it provided me physical presence. Looking in the mirror now I can see my ring cage and collar bone and I can not recall ever being so frail. It can have an impact on my confidence and when I walk around I tend to hunch over now in discomfort where as before I would walk with my back straight.
In hockey there have been all sorts of upsets. We lost to a team 7 to 5. That team was then beaten by a team 1 to 0. And we then beat them 3 to 0. Looking at the games you would figure that we should have been able to win the first game, but we tend to get in a lot of penalty issues against them and they can get into the heads of the kids. This is why we told Xavier he needs to project confidence in his team and shake things off. He failed that this morning. People make mistakes and it is ok, but you need to learn how to recover from those mistakes.
We overheard one of Olivier’s friends today speak of how you need motivation to get difficult things started, but you need determination to continue. The friend is 11 years old and he is right. Resilience when things are going tough can be difficult. This morning I contacted The Mayo clinic to see if we can get more information and hopefully I would be eligible for treatment. We will see what happens when I submit all the documents. It looks more and more that we will be going to Spain though. Mel has show great determination in trying to get OHIP to pay for my treatment. It is a very long shot but we have a lot of things in our favour. The hospital we are going to meets the requirements of being a tertiary hospital. This means it does all the regular stuff, complex surgeries, oncology, research with specialized care and be state of the art. The drug that I will be getting is also approved to be used in Canada but it is the methodology of the treatment that is not available. We need to argue that this is urgent and that we can not wait. Seeing as they have given me 13 to 15 months, I think I can not wait 7 or 8 years to pass trials.
I have not throw up today but I also know that I am struggling to eat as much as before and just need to be careful. This treatment in Spain will help control the ascites which will allow me to eat more. Otherwise I am going to ask to get them drained every month to help facilitate me eating. I think I can handle the surgeries. My oncologist brought that up as a concern for laparoscopic surgeries on me and getting close to margins. Eventually I am going to have so many wounds on me. I think it will be fine and I will look like a proper street knife fighter.
Special thanks for prayers from Mel’s great aunt. She is at a convent and we went to visit her once upon a time. It is a great place and hearing some of the stories that she went through in Africa is impressive. My brother from another mother requested that his mom provide me with some cabbage rolls and she called me today for a quick chat. I did not get a chance to talk long as Xavier’s game was about to start. What I appreciate though is the love and concern from everyone who reads my blogs and provides support however they can. Our freezer is jam packed with food for a while so it is quite appreciated. I need to get some rest now as we have 2 more days of hockey hopefully.
Q