I am still recovering from the weekend but things are getting better. Physical tiredness is much easier to deal with then mental. When I have mental acuity I can deal when my body says it can not. I had a lot to do this morning with work and I was in calls for most of the morning for various things. It is nice to contribute and feel needed and helps to stimulate the mind. I actually ended up eating far more frequently and consistently ate through out the morning. Around noon though I had to go to to the hospital for a couple of appointments. The appointment with my oncologist started close to an hour late which sucks as you can not do much during that time and you wait. He seemed much more upbeat and positive today and looked into some of the second line options for clinical trials and also suggested some potential phase 1 trials. He is a bit concerned with blood clotting for me and wants me on ood thinners. There is also the feae of me going to Spain and something bad happening. I know that he wants what is best for me so I understand his hesitation and the fear of the unknown. When I first became his patient I made the comment to him why he boring when we can make all of this exciting. He wants things easy and i said I can be a case study on how do we beat unexpected complications. I am pretty sure I am winning this argument. After our appointment with him we went to the palliative supportive care area to chat with the nurses and doctors there. I am extremely fortunate that the nurse is a friend and the care that we recieve is exceptional. I think that she is a fantastic nurse regardless of the friendship, but knowing you have someone in your corner like that makes things so much easier. We told them about the incontinence which no one really thinks is much of an issue and scheduled some more blood work for me as well as retrieved information to give to Spain. While we were there we also had my accessibility application filled out and hopefully Mel can get it submitted for tomorrow. When I went to get bloodwork the lab said that I did not need blood thinners as my blood flowed so freely. My blood pressure is also abysmal along with low sodium. I get to eat salty food and try and raise my blood pressure. If I start to get dehydrated then I will get an IV during chemotherapy via my port. I will monitor how things are this week and try and keep my hydration up naturally. I will set a goal of trying to drink 250ml while eating and see if that is doable or not. I just need to take some sips of water constantly through the day. The tricky part is it impacts eating.
Today while I was sitting in the hospital waiting for my appointments I thought of all the sacrifices that people are doing to help us out. My father in law this weekend spent his morning chipping away and shoveling our driveway so we could come home and pull in after the tournament. Our street is too narrow for us to park on the road and we may not have been able to get in. It is a lot of work and effort but he did it with no complaints or hesitation. Mel has to take time off work to take me to appointments because she is unsure of whether I can drive or not. She also wanted to be there for my appointments when I am chatting with the doctors as there were things that she wanted to talk to them about. She is also doing all of the coordination in the background with all of the groups and answering all of their questions and making sure that everything is organized. She has been a rockstar and I am not sure if I would be successful without all of the things that she does in the background. While we were planning for Spain I think that we got lucky that my sister frequently travels the world and is a very comfortable traveler. It gives us confidence and flexibility that she can take care of the kids and knows what she is doing. I am also very fortunate that she is willing to leave work to handle all of this and she is in a financial situation where she can spend 10k on a last minute trip to help us out. She is paying her own way and it is not necessarily a fun planned trip for her. Her role is to take care of the kids and make sure that they can experience all of this. It would have been very difficult with logistics if she could not come. The kids adore spending time with her and she will be able to help them navigate a foreign country. I am not sure how many people would be in a situation where they could drop everything to help us out like this. I appreciate all that she is doing. This is probably the reason why she is easily my favorite sister.
We had to venture out shopping for some things today and Mel suggested that I use the wheelchair. I was a bit hesitant but agreed to it as we were going to Costco. Looking back it was probably a good idea. Mel told Xavier to push me around and he is horrible. I was a bit nauseous from him pushing me as he has no concept of pacing or moving smoothly. He was trying to speed his way through everywhere pulling and pushing the wheelchair sideways forwards and backwards. I told him to slow down and be smoother. It did not help at all. He would also sometimes forget to push me and leave me and I would need to wait for him to come back. The wheelchair we have is one for portering so I can not actually push myself around. Mel said that everyone is going to take turns pushing me around so it is more comfortable. Hopefully he will learn and be better next time. The kids are not going to school again tomorrow and Mel is going to contact them to figure out about what to do about when we go to Spain and whether we can get some of the work done prior to us leaving. I think that they may be able to accommodate that.
As we get ready Mel thinks I need a haircut. While in the shower today I have noticed that a lot of my hair is starting to fall out. I contacted my hairdresser and she is going to try and fit me in. She is amazing and has always accommodated me last minute for lots of things. When she is washing my hair if it is really bad and a lot is coming out I might tell her to just shave it all off to make things easier. We will need to see what happens over the next couple of days. I know that before it just got progressively worse as big clumps fell out. So far the other systems are not too bad and I can still taste good a bit. As long as I can taste food in Spain I will be happy. It would be a shame to travel there and not enjoy their delicious food.
QHM