Perspective on things in life make such a huge difference and your approach to things does have an impact on everyone around you. One of Mel’s best friends had come over for coffee last night and we were sitting around chatting and catching up on all of the things with cancer and our trip. Mel had mentioned the social worker and unpacking feelings and we had a good laugh about that. Her mother is going through cancer as well and things keep on popping up but she is extremely positive about it and you would not know the seriousness of it. We had discussed how much should the kids know about the seriousness of the cancer and we thought there was no point in putting additional pressure and stress on them knowing that as far as we know right now it is incurable. Throughout this journey we have not acted as such, and I believe that I will live beyond the expected dates that they say. We go through each day as normally as we can and live each day by day, focusing on what we have. Since the treatment in Spain I have actually noticed a crazy change. The amount of food that I can eat right now compared to before is at bare minimum 4x. Not just in volume per sitting but in the frequency as well. Previously I could only eat every 2 hours about 1/4 a cup at a time. Right now I am eating closer to a cup or more per sitting and I can manage to actually do it almost every hour. It is a bit difficult to see how real some of this is as I am eating soft, pureed or soup based food. But if you use congee as an example that is pretty solid and I doubled by intake of that along with eating a full egg. The treatment did something positive and I am grateful for being able to go. My oral thrush is declining and the mouth sores are starting to come under control now.
Later today I am going to order my electric wheelchair to help out with travel. I am going to try and not use it when I am going for super short trips to the stores and such, but I can also see a lot of times where I would want to use it more frequently. When I go through treatment I get quite fatigued, but during the times that I am not in treatment I think that it would not be as bad. I do not think that I would need it to go to treatment, but when we are in Barcelona it makes a huge difference as there are a lot of uphill and walking. The kids and Mel were averaging 20,000. I have yet in the last year hit more than 5,000, so I do not think that I could handle anything near there. Right now the biggest concern seems to be muscle atrophy since I was in the hospital bed for so long. I struggle walking up and down stairs right now as it feels like my legs are going to give out. That is ok because I know the cause and there are things that we can do to work on that. It is kind of like when I talk right now, I sound super fatigued and do not talk well. My mouth is full of sores and it is actually painful to talk too much. This is not permament though and it will get better, so it is not a huge concern of mine. It just makes me sound worse than I actually am.
I have my oncologist appointment on Wednesday and hopefully we will know what we want to do moving forward. I expect that within the next couple of weeks we will have the consult with Barcelona and better understand whether we should go for another round of PIPAC or pivot. From what I have seen so far, I would definitely go back for more treatment.
Q