Yesterday for Mother’s day i spent a large portion of the day cooking things for breakfast and for dinner. Everyone loved it, but I was quite tired and struggled to clean up afterwards. My core pans I tend to wash myself as Mel is not a fan of washing my cast iron or my carbon steel pans. At the end of the night, Mel said next time for Mother’s day we will order in or do something different so she is not cleaning. I struggled with things this weekend and it has quite the impact on Mel. She does not like it when I am not doing well and when I am in discomfort. I think that in these instances she starts to worry about what if I can not recover from this, or is this going to be the last Mother’s day that I cook for her. It is difficult to not think of things like that when things are not going well. I admit that at times I do wonder if things do not go well, how long can I sustain and try and be positive about things. We had a chat and then she started seeing the positives in things and there are a lot of things that we can be grateful for. Generally as long as I can see a strategy to help contain things it is easy for me to show strength. I find it difficult when I do not see a method to alleviate things. Ascites build up can be reduced by draining my abdomen. Oral thrush and mouth sores have a treatment. Lost of taste and textures are temporary and I can use Mel and the kids to adjust seasoning for my food. When I can not see a clear option forward is when I struggle and wonder if I can do this. There are times where I am constantly in discomfort and in these instances I wonder how will I cope with this. Luckily in these instances we can come up with something. Generally in these instances my nurse from palliative supportive care comes through for me. But when I struggle, I think Mel worries about what will happen if I can not pull through something. Mel and peope tell me constantly that they think that I am strong. Strength is not ignoring pain. Strength is continuing to think clearly, adapt quickly, and care deeply even in moments of fear and discomfort.
This morning I came in for my procedure and they were able to add on the drainage. The doctor was not keen on doing the port because i do not have much fat so he thinks that this will happen again. He wanted to give me a PICC but I told him that it got infected last time and I had a rash and it is not something that I was really interested in. I said if this last 3 months and I need to get it done again, so be it. I will try and gain weight so that it is not an issue. Instead of putting the port on the left side of my body, he put it by my armpit. We will see if that was a mistake or not. After the procedure I went to supportive care where I was there for a couple of hours to drain my abdomen. I did not think that it was going to be excessive, but they drained 4l today so i need to go back tomorrow to get more drained. It weighed 3kg or 6.6lbs. I am still gaining some weight, just not at the pace that I had anticipated. Interestingly enough even though I had to fast since midnight today, my food intake was not bad. I was supposed to be sedated through the procedure but I felt most of it even with the freezing. This doctor was not as gentle as the other one and now hours later I am still in quite a bit of discomfort. The port is super sore and hurts, but I am not sure how many holes I have there. He said that it would be difficult to stitch up the open wound I have there as it is approximately a 1 inch circle. The nurses there are not use to seeing the port so exposed. I am surprised that my side hurts a well because last time I was drained I did not remember it being this painful. The insertation was just as bad as last time as well. I think that the pain in the chest is due to how skinny i am. There is nothing there to cushion so it is pushing against my muscle and it is difficult for me to move anything with my right arm. Getting up out of bed or out of a chair I need to take my time again because I really feel it. The upside to all of this though is that I can eat more compared to prior to the drainage. When I came out of the procedure i was able to eat approximately 2 cups worth of food immediately without much issue and then had my coffee. This pain is fleeting though and it should be gone by the time I have chemo, where I will have other symptoms. We are going to be traveling to Toronto this weekend so I am expecting that this is going to be quite interesting to see how well I handle everything. We are only gone for 2 days though so I think that it should be fine. I am taking some pain killers this time to help out with things, but I am not 100% sure how well they are working. I have some really strong pain killers if things get worse, but for now it seems to be enough to dull the sensations.
We are waiting for the translation of the biopsy report from Spain as they have received it and once we get that I will provide an update. I also contacted my oncologist friend to see about getting a paid PET scan down in Mississauga. Seeing as we have the funds for this it should not be that big of a deal. Interestingly, we have not heard back from the hospital in Michigan when I told them that I had not agreed to this arbitrary surgery date that they told me about. They said that they would look into it and the doctor would get back to me. Spoiler alert. It has been over a month and they have not gotten back to me as of yet. There is the possibility that they reached out to Mel and I was not included but I feel she would have told me. I am supposed to take my pain killer right now but I just finished eating so I need to wait a bit. What I just realized though is that right now it feels like i am getting stung by bees constantly. That is what the pain feels like, not enough to really hurt, but annoying enough. It might be due to the fact that I am typing and using the arm. I am trying to avoid using my right arm. Luckily I spent time in University practicing using my left hand for just this situation. I actually did it because I worked in a stock room and sometimes had to climb structures and write customer names and things on boxes. It seemed useful to be able to write left handed as it made it easier to stretch out and be able to write.
I had mixed feelings about today. I wanted it because I knew it was going to be effective, but I was not looking forward to the lingering discomfort and pain especially before Chemo. It is worth it though as the pain and discomfort in the long run is fleeting. The pain will last a couple of days, some of the port pain might last a couple of weeks in order for it to heal, but the trade-off is well worth it. I get to eat more delicious food as long as I do not get thrush or mouth sores again. As long as I can eat this weekend I will be happy. If I can not then I am going to blame Mel. If 20 years ago she had managed to convince her doctor to take me as a patient I would not have ruined my stomach with all of the pain killers to treat my migraines. She only took me on after we got married, i think that was like 5 years extra. Mel would have had 5 extra years of nagging and maybe we could have prevented the cancer from starting. This pain i can deal with as it has an end point and I can live through a couple of weeks of pain and discomfort. Afterwards if I need to get drained monthly, it is not bad, just a couple of days of discomfort. I had quite the eventful day.
QHM