This morning we had a meeting with the oncologist and some other appointments. The traffic in the morning when school buses is running is crazy, a trip that can normally take 5 minutes can get extended an extra 10 or 15 minutes because kids are picked up two driveways apart. We arrived at the cancer center about 5 or minutes after I had wanted to and I had bloodwork to do. I registered and went to bloodwork and as soon as I was supposed to enter, Mel who was in the waiting area told me that they had called me so I had to abort the session and go see the doctor as he was ready. We initially chatted with the nurse and the dietician and brought them up to speed on everything that was happening with the treatment in Spain and the increase in weight. We also had a couple of questions to ask him and get clarification on things. He had said that he had not read the notes from Spain as if he is not tagged in it directly he is not aware of it. So he had the nurse print them out so he could see. Something that was amusing was he told me that his Google News feed had my GoFundMe pop up on it and that is where he then read my medical update, so he was at least aware that things were going well from the Spain treatment. During the chat he was a bit concerned with the mouth sores and thrush and wanted me to see the dental person afterwards. The results from my previous CT scan as well as from the lab worked indicated that the treatment that I was doing was effective and that we are currently controling the cancer so it has not spread at least. There is still a lot of discussion about the progression of it as there is no visible sign of progression as of right now. We went to get the bloodwork done and then went to see dental. The bloodwork went relatively smooth, the lab tech had mentioned that I had just been tested for some of the things identified and I said that they wanted to remeasure some of them. Talking to the dental, the doctor was not there and we ended up chatting with the hygenist who said that things looked well and I was doing everything that I was supposed to be doing but that the mouth sores would most likely not be healed for treatment next week. She did not say whether we should wait for treatment or not. I would not mind if we waited and then perhaps I could taste some food next week. It still surprises me how easily fatigued I get from everything still. I had imagined that with my increased energy things would get better, but clearly it has not. I need to wait to hear back if we will be doing treatment next week or not based upon some of the results and how I feel. The results from today’s bloodwork indicated that my white blood cell count is quite high, at 31.4. I need to make sure that I monitor my temperature to make sure that I do not have a fever. I love how I always try and make thing complicated for my healthcare teams, always keeping them on their toes.
I have been eating more solids and can manage it much better and have also started thinking of things that I can eat that are soft. We are now going to start including some cheesecake desserts, some whipped cream and fruits. I ate a KD cup of mac and cheese for lunch and while it was ok, since it takes me 30 minutes to eat, by the end it was not that awesome. I am going to give risotto a try and make sure that it is a small enough sample for me to eat. Mel also thought of some Asian treats for me, such as my favorite red bean and sweetened coconut soup and some chia pudding made with coconut cream. I do enjoy my coconut cream. I think that I am trying to add more food so I can have a bit more variety. There is a sweet tea soup that is a dessert with eggs that I really enjoy and I have asked my parents to make that for me as well. There are so many nice Asian dishes that are soft that I think that I can eat so I am going to lean into that for a while. We are also going to go to the market on the weekend and pick up some things from the market for me to eat.
With everything that is happening all of the time, when I am super fatigued it can be difficult to focus on the positive things that are happening in my life. Even with all of these challenges that I have, I am doing better and I can see a noticeable improvement. I have minor set backs here and there but have managed to control them. I am still shocked that donations slowly trickle in daily still and more and more people see and contribute. I think that I am quite lucky in that sense that I am surrounded by such a caring community. I also appreciate that when I give thanks to people that they say that we deserve it and it is a reflection of the impact that we have had on people. Yesterday a friend of ours sent a clip of a preacher and the message and it was interesting to listen to. I am not a religious person but I do appreciate the message. Having faith can be difficult and the act of praying and worshipping takes effort and you can not just necessarily expect instant results or some miracle from God. Persistent prayer is important. I think that is the same with going through this journey. It is not always easy and there are some things that are difficult. You need to persist and do things because it is the right thing to do and not to do it expecting instant results. Prayer is not a last resort, but the establishing a central tenent as a first resource to cultivate a deeper connection. There are a lot of really small things that I need to do every day. Mel has arranged pills for me that I am suppose to take throughout the day and we have a routine established. It is tough to follow and we are trying to get ahead of things, but she dilligently sets it up the night before to help us for the next day. When we are at appointments, Mel takes the lead and is always on the ball. I can 100% say that she is responsible for my improvements with her tenacity and making sure that I am on the ball with things and I appreciate how awesome she is.
Q