Today was quite the interesting day. I was supposed to have chemotherapy today and I had an appointment withe supportive care team prior. Talking with the doctor there he has scheduled an ultrasound next week to see how much fluid build up I have to see if it makes sense for me to get drained next week or whether we should wait. After that quick appointment I went to my chemo appointment and this is where things fell apart. The nurse ordered my drugs and as she was preparing to insert the needle into my port she paused and asked me if it always looked like that. I replied yeah, as I can not actually see it, and I thought it was just a scab over it. It was not a scab. What happened is the skin has eroded and the port is actually completely exposed which is not normal. I have no skin over the port which is a high risk of infection. In the last couple of weeks for whatever reason the port became exposed. As my sister-in-law was with me he took a photo and sent it to the surgeon that implanted it. He said it needs to be replaced right away, so my sister-in-law went to angio to see if she could find someone to talk to. At HSN they only carry 1 port at a time and they do 1 procedure per week and they had already done one that morning. There is a long list of people waiting and I do not want a PICC line, so I am not sure what will happen. I ended up not getting chemo today but the amusing part was this is such an anomoly that all of the nurses that heard about it wanted to see what it looked like. It started with my nurse asking if she could get another person to take a look. Someone else came and said, yeah that does not look normal I am not sure what to do. It eventually led to one of the more senior educators looking and saying that we should not use it and she asked to take a picture as a case study to teach others. I let her take a photo as it will be beneficial. As more nurses came and asked if they could look, I told them no. My limit was only 6 people could look at it. I appreciate them asking as I had a steady stream of people who found out come and look at it in more detail. I think all of the nurses working today came and look and even some people in some other areas who heard about it came and looked. This follows tradition so far, why make things simple when we can add more complexity to the case and throw a wrench into the plans. For now I am waiting for a phone call on getting this port removed and hopefully we can get one put in at the same time. I am not really looking forward to it as I felt it all the first time, I may ask to get the other treatment, you still feel the pain but you do not remember it because you are high and you forget. The end result though is you need to stay in the hospital longer. I am fine either way, if I do not get the additional drugs then I do not need to fast, which i am ok with. I just need to deal with the pain as they insert it. It is painful but manageable. There are some procedures which are not, but I have had the PICC and the port insertation both done and I have felt them both all of the time. Third time’s a charm. They may need to alternate back and forth if it does not heal properly.<\/p>\n\n\n\n
I had a pretty good day with my food intake. I gained 5lbs in 3 days which I think suggests that there is some fluid starting to build up as prior it eas 1lb per day. I realized that I missed having tofu first thing in the morning and asked my parents to make more as I have eaten it all. I had prepared enough food for eating at the cancer center and managed to eat it all fine. With the boil water advisory in Sudbury right now I am not sure how big of an impact it will have on my ability to eat. For some things it will not be too bad, as I do drink a lot of other liquids than the water. The kids have eaten later, when they are hungry. Xavier is running hurdles this year and he has yet to be coached on hurdles at school and has not even seen a hurdle. I was supposed to coach him but when I was diagnosed it has been difficult. We tried to do some things today but alas it was difficult. I should have ordered the hurdles earlier from Alibaba to get shipped here, but it is too late now. We went to Home Depot and bought some PVC and joints to make some hurdles for the low cost of $65 compared to paying 300-400 per hurdle in Canada or 100 per hurdle from Alibaba. I think I can make 2 hurdles, but I might need another PVC pipe. I will cut them tomorrow and see how many I can make with it. He has a race on Friday and I told him he is going to get killed in the 100. With enough time I can train him to do well and if we can make some hurdles at home I will be able to train him enough that I think that he will excel. We have a couple of weeks and I can manage to do some things daily with him. With his work ethic and discipline I think it is enough time. On the way home from the store we stopped at Wendy’s so I could get a Son of baconator. I thought that I may be able to eat it all. I cut the sandwich in half and ate half of it easily, but the texture was kind of off for me so I did not want to try and eat more. I think I could have eaten 3\/4 quickly in one sitting. I could eat the whole burger if I waited 15 minutes between halves, but I opted to give it to the kids. Olivier wanted a small portion and Xavier had a bigger portion. I also got them frostys with fries and they enjoyed that. Mel will be home tonight so I will have more help. While we were at Home Depot I opted to use the wheelchair as it is a big store and I did not know how far I would have to go. I would have been able to manage but I did not want to risk it. Xavier has seen me when I depleted my energy too much and he asked if you are too tired how are we going to get home. The safer choice was to just use the wheelchair. He was able to keep up with me walking and did not struggle too much. He said that it was much faster than he thought it was going to be.<\/p>\n\n\n\n
It seems that when things are going well I need to complicate things to make things interesting again. We are now in the weird holding pattern while we figure out what the next steps are. I am hoping that I can get another port put in as I really do not want a PICC. We will see what additional support I can get to make things happen. The nurses in the cancer center were surprised I was able to get a port so easily the first time and how I could get in touch with the surgeon and make things happen. They think I should leverage all the connections I have to get this done quickly. I am still waiting for the results from Spain. Once Mel is here he will take over the care coordination for me and things will move. Today was the perfect day for Mel to be gone and my sister-in-law to accompany me as we used her connections. Like I have said numerous times, the amount of support and love that we have received from people have been amazing and I appreciate what everyone have done for me.<\/p>\n\n\n\n
Q<\/p>\n","protected":false},"excerpt":{"rendered":"
Today was quite the interesting day. I was supposed to have chemotherapy today and I had an appointment withe supportive care team prior. Talking with the doctor there he has scheduled an ultrasound next week to see how much fluid build up I have to see if it makes sense for me to get drained…<\/p>\n