Yesterday I think Mel and I were a bit preoccupied after chatting with the oncologist in the morning. Afterwards Mel did quite a bit of research and she found out other techniques used to treat this and I actually found a research institute in Spain that specializes in treating this. They want a lot of information before to even see if they will treat you. Mount Sinai in Toronto has a team that specializes in this as well as the Mayo clinic. After researching everything I am actually much more hopeful of the outcome of everything. When you look at everything at face value things are quite dire and the overall prognosis is not great. That being said there are cases of people living for a long time, they are referred to as super survivors and in most of those cases they had different types of treatment and it results in reducing the spread or reducing it enough that they could have surgery to have it removed. From my perspective this was all good news as there are cases of people surviving this even with dreadful odds. I think in my mind what helps is that most of the people with what I have are in dreadfully poor health and condition, which would result in poor outcomes. The doctors said that compared to others besides me being so thin I am in a great position. I think we may alternate between staying with my sister, some friends and staying downtown close to the hospital. It will depend on how things are since no one lives close enough to the cancer center to make it super convenient. We should be able to easily rack up a ton of hotel stays and I did find a website called Staywell that provides some assistance for medical stays.
Yesterday I went to the pharmacy to pick up medication and most of the medication I was picking up was for when I would be in chemotherapy so I was confused. I had thought that they would be providing some to help with motility. Mel eventually picked those up for me and I will take those to hopefully help me with my stomach issues. So far today I have been able to increase my eating and I think that the goal for now is to try and hit 6 times eating. I am not sure if I can handle 8 or 9, but I want to make sure that I can increase my weight, or at the very least prevent weight loss. My weight has been stable over the weekend, which is a bit reassuring as I tend to drop a bit when we go away. Chatting with the dietician she was concerned with my weight and whether I had any bloating as increased fluid build up leads to a bloated stomach that is quite evident. I have not seen any of that as of yet so I think that things are going well.
We had some more food dropped off for us and I truly appreciate all of the assistance that people are providing for us. We should save some of this food for later on when we need it, but we did not have a chance to go grocery shopping and we have been making what people have provided for us. Yesterday we also received clothing from various people. Some sweaters for Mel and myself, which i appreciate as I tend to wear 2 sweaters at once now. Most of my clothing does not fit right now as prior to this year i was wearing either XL or L and since this summer I fit in a M and sometimes I fit into a S. If this was the 90’s I could be a model. I appreciate all of the assistance that people have provided. Today the kids shoveled the driveway since it was a snow day. I told them to shovel together but Olivier was playing his VR and wanted to wait until he was done his games. Xavier went out on his own and shoveled and he came in. About an hour later Olivier went out and shoveled and by that time it had stopped snowing. Olivier told me that it would be Xavier’s turn next and I told him that his brother had gone out prior and actually shoveled 3 times the amount that he had done, but since it had snowed throughout Olivier had no idea that it was done.
The situation that I am currently in is not great, but I am quite lucky that we have such an amazing support system surrounding me. Everyone I have spoken to have offered to help out and what everyone says is not just lip service because I have requested ridiculous things and the response from everyone is sure, I will do that. I should be going down to Toronto the week of the 23rd for additional testing and then start treatment 2-3 weeks afterwards, which is not terrible timewise. Next week we have an appointment with the Social Worker. Mel did not think that we needed to chat with one but I do not think that it will hurt. I am not sure what to say to the kids or what to tell them about all of this. They know some stuff that is going on, but they do not know all of the details involved with it. Right now things are lining up so far that we may not have too much of an issue with travel and with someone to take care of the kids. As we find out more information we will keep people updated.
QHM