I finally heard back from the surgeon today and have an appointment scheduled with him next week. I think that this is a positive as it would indicate that the oncologists have pressured him into considering this procedure even with the risks associated with it. The issue is that with this timeline it will still most likely take a couple of weeks before a surgery can be scheduled. I am assuming that if I am meeting with him next week then I will most likely not be having surgery next week. This will also most likely result in me being in the hospital for at least an overnight stay. I could be wrong though and they may release me the same day, but to me it seems that it will be a bit more lengthy of a procedure. Once this is done I am not sure if I would then still get radiation or not. I am assuming that I would. At my last appointment, when we were talking with the oncologist, what he had mentioned is that if they have access to the stomach or internals, they will do a test to see if the cancer is wide spread. If it is then they tend to abort the surgery as there is no point in undergoing all of that if it has spread. Waking up from the surgery then it would be a pretty clear indicator on what happened dependent upon the amount of bandaging I have around my stomach area. I am not sure exactly how I would feel about that. Post-surgery when you are drowsy is not something that I really like. I normally try and fight it as much as I can in order to gain mental control and understanding of what is happening around me. So far this has been relatively positive. The tumour board is meeting at 4:30 today and I will chat with the oncologist later tonight to see what is going to happen. I will be home by that time so Mel can join in on the call and we can see what they have to say about it. Advocacy is powerful. Even more so when it is internal from high ranking people.
I had the crown placed on my implant as well, so today has been quite the eventful day. There is some pressure on it and it is a bit awkward when I eat. They give you a model of your teeth which I found interesting and at the end of the appointment they go through how to clean the tooth as it is slightly different. She was demonstrating how I flossed and it was rather extensive and she was struggling a bit as the tooth is in tight. It is supposed to loosen up a bit over time so that they are not so tight against the other teeth. At one point I flat out told her that I did not care and would most likely not do what she was telling me. During treatment I do a rinse every couple of hours and anything that may potentially lead to bleeding or infection on my gums I try and avoid.
I think at this point I have less anxiety of things as good or bad, we will know what is going to happen soon, and I just need to then mentally prepare for what the next steps are or what happens. In the last couple of days I have diverted from some things that I originally said that I had wanted to do. Focus on the positive and gratitude. I spoke with a friend of mine today that I am doing work with and we were discussing personalities of people. You need to surround yourself with like minded people. People who are good and share the same values as you. It has a huge impact on you and it is something that is important to teach kids. We have kids the same age and they know each other and play hockey with together. Friends can influence you, and you will influence your friends as well. I know that my friends have had both positive and negative influences on me. My friend Mike was a positive influence on me as he would ask me for help in our classes all of the time. In order to help him I would need to do the work so I could teach it back to him. My best friend was a negative influence in that we both knew that we were bright and could get by on natural ability. We did work when we had to. It is never too late when you procrastinate. My friend group was fantastic growing up in high school, but it shows the dichotomy in who I hung out with. Neither of them were positive or negative but this is something that persisted throughout university as well. My group of friends within university is highly accomplished and bright. I never hung out with the kids who liked to party all of the time and get drunk. I tended to surround myself with more cerebral people whom I could have a conversation with. As I did not drink, I normally did not spend my time with people whose identity was around drinking and partying. When we go out with hockey parents now, I will go and join in on conversations and socialize, but if the time is spent just on drinking and discussion of things that I do not care about, I tend to leave earlier.
I appreciate all of the support and people that I have surrounded myself with whose first instinct is to give back to those around them instead of behaving in a selfish manner. Gratitude is important as it is very difficult to succeed in life on your own without support from your loved ones.
I wrote everything above late afternoon prior to the tumour board and then the next bit now.
We just got off the phone with the oncologist after a lengthy 40 minute conversation. I appreciate that I have a friend that can push things on my behalf. He admitted that during this all he has been biased and has been pushing an agenda for aggressive treatment. I am not sure if I am grateful that we had this chat in the evening or if it was during the day. I know that I would not be able to work right now if this was shared earlier. We have two options right now but all of the doctors are the tumour board were in consensus with what should be done if surgery was to proceed.
Option 1. Start with cutting me open to see if it has spread. All signs and experience from everybody indicates that this is the tip of the iceberg. There is less than a 1/3rd chance that they just see this localized at the port. All of the scans have been inconclusive to identify whether it is actually there or not. The fear is that they will explore and see that there are cells in the abdomen and then they will abort the surgery. If they do not find anything then they will proceed with the surgery and remove the growth by the umbilicus. The likelihood that a stray cell escaped and latched on previously is low and statistically when this occurs it is because it has spread and this is what we see. I was aware of this and knew that this was what is typically seen. If this is the case removal will work. The biggest fear is how will I recover from this as it may take 6 weeks as it is pretty major surgery. I will not be able to do much and Mel is concerned whether I can eat or not. If I was stronger than this would be a. I brainer. I also am not sure of what the mental impact will be if it is widespread in my abdomen and they do not do surgery. Right now I will say I am not confident in how I would react to that news if I wake up and see that they aborted the surgery. I would not have had time to prepare for those options or what the next steps are. The cancer I had was aggressive originally so we would need to see. At this point it would be palliative and trying to manage everything with an unknown expiration date on the possible deterioration of my health.
Option 2: Skip the surgery and go with stereotactic radiosurgery. This may not kill everything and it also runs the risk of rupturing my abdomen. When it is all done I get scans every 12 weeks to monitor what is happening. This is easier for me to recover from. We would also not know if the cancer has spread or not. It would also not rule out future surgery if needed. The risk is that we do not get all of the cells or we rupture the bowel which may lead to death if not treated quickly. This risk would persist for 6 months.
I am not sure which is the best option at the moment and we need to chat with the surgeon. I am aware that none of the surgeons are recommending to remove the umbilicus without exploring first. I am also aware that the only reason that this is being considered is the advocacy of my friend and the fact that I am considered young. Mel is preparing questions that she wants to ask the doctor. If we opt for surgery we do not know when that may occur. If we go for stereotactic radiosurgery we could start on Wednesday or Thursday next week. Next Wednesday after we chat with the surgeon a decision will be made.
Quoc Hao