We met with my radiation oncologist this morning who is a friend of mine. Our kids played hockey together years ago and we worked together at HSN and it is someone that I like to get his opinion on things. He is extremely biased to try and help me and what he says carries a lot of weight in helping sway Mel to different perspectives. We have decided that we are going to participate in the clinical trials. If things become too difficult for travel then we can always leave the trial. The results from the first phase of the trial have been overwhelmingly positive so far. I have also have great succeses in experimentation so I think that this will work out for the best. Some of the logitics involved may be a bit difficult so we will need to figure that out. My oncologist had said that we need to allow people to help out and do not feel guilty about it. People want to help us anyway that they can. We will need to get people to help us out with quite a bit in the future while we figure out how to navigate everything. I have quite a few people who are willing to drive me to Toronto if needed. What Mel is worried about though is how I will travel. She also worries about when I am too weak to do things on my own after treatment and whether I will be alone down in Toronto. It is something that we will figure out. They initially want me to stay in Toronto for a month at the start. I am not sure if I want to do that. Mel had mentioned bringing the kids to Toronto on the weekends but if Xavier has hockey that is not something we would do. This is going to be quite the adjustment for the kids I think. On the bright side though, we will be going to Toronto more frequently. My sister lives there and she has said I can stay with her, but her place is not that large and I do not want to disrupt her life with all of this as I end up in bed sleeping or resting most of the time. I also have friends in the area that offered me to stay with them. We will figure out how this all looks soon enough. Mel got a bit emotional on the call with our oncologist and it impacted my friend as well. I think that is something that concerns me a bit. It is like there is a secret between the two of them that they are hiding from me and their facade cracked and it exposed sadness. The concern is that I am missing something, they seem to think that this is more serious than what I see it.
When we travel we tend to play some games in the vehicle and it always amuses me how perceptive and in tune the kids are. A question that came up for me is what is a trait that is common among my immediate family. We had a discussion on what that meant and we decided for this question it meant blood relations, so my siblings and parents. The kids and Mel gave approximately the same theme. One of the answers that stood out was intolerance of incompetence. I was rather amused as it is something that is very evident amongst my family and something that the kids picked up on. Mel said that we can all cook and they asked even my brother and we mentioned that he has formal training, but he chooses not to do it. They are right though, that is what probably bothers me the most. If you are learning though or not away, I do not necessarily say that is incompetence. I think that is what bothers me the most about doing treatment. The feeling of incompetence because I can not do things. Everyone tells me that it is expected that I can not do things, but I still see it as incompetence and whether it is fair or not it annoys me when I can not do things. As things progress there are times that I can not do much and I think that is what worries me a bit. If Mel is not there then what do we do in that situation.
I have not had the chance to do much research on this drug yet, but Mel has started to look into it as well as other clinical trials that are happening. There is quite a lot of research being done on this and the current study is a 20 year study, with this block being 6 years. Mel was concerned that this did not have an end date and my friend told her that it was a good thing and it meant we could keep on getting treatment as long as it was effective. There are times where she is sad and she has mentioned that she gets emotional. She tries to hide it from me as she does not want to add to my burden, but I need to try and think of something to help her out more. My ideas so far were to just piss her off so much that she spends all of her time angry at me instead. I thought about buying a glass box and a McLaren but then she will be paying off that car for the rest of her life. My other idea was to clutter the house with knick knacks, such as photography of me on various things. That way she will always remember my presence that I am always watching her. She says that if we bring something in we need to get rid of something. We have a lot of small toys we can get rid of. I think it would be a great trade off.
While we were away Mel’s parents went over to our house and shoveled the driveway and left treats. As there was heavy snowfall it was appreciated. In the past if it snowed while we were away we would actually not park in the driveway and we would park on the side of the street and shovel prior to parking. Having them shovel for us saved us a lot of effort and time. One of Mel’s coworkers also dropped off food at the front door for us for when we did not want to cook. It was everything for a meal. I always appreciate things like that especially as things get harder and I can not cook. At that time we will probably rely on my parents to drop off food for us. Hockey parents took care of Xavier while we were at Princess Margaret. Between driving, setting up cameras and making sure that Xavier was fed we appreciate all of the help. There was a huge debacle with our room, as it was entered under 2 different stays our keys stopped working. We had go check in again but in our rush that morning we had forgotten to do it. The check in had to be in-person and they would not let us check in. I did it digitally but they will only give keys with proper ID. They told us that we could not get another parent on the team to do it. Well a parent on the team managed to convince them to do it after giving a lot of background. She managed to get him some reprogrammed keys so he could come in and out of the room while we were away. There are so many little things that people do and we need to remember to show gratitude to everyone for helping out. There will be lots of opportunities for people to chip in and help us out and we just need to make sure that we accept the help when the opportunity comes up.
Quoc Hao