This morning Mel warned me that our oncologist was concerned about surgery when I am on my current treatment and she was concerned that I was going to be going in for a permanent tube. She gave me questions that I was supposed to ask the doctor today. It was a list of I think 3,748 questions, give or take 5. It was printed out on over 40 sheets and was in a spiral bound binder. When she dropped me off at the hospital I accidentally dropped it in a puddle and it dissolved instantly. She should have laminated each page but she did not have time. Originally they told me that I had to do bloodwork but as I had it done two days ago they said it was ok. They brought me in right away as there was a room open and I had the same doctor who had put in my second port. He was awesome and did it quickly so I was excited. It was a fairly painless procedure. Not pleasant but as Xavier would say, it was pretty not bad. I have some stitches and will need to get them removed next week. I will probably get drained next week as well as get hydration for 3 days to see if that helps. The thing with getting drained is I feel my organs shift and today they drained 5.2l, which translates to 5.2kg or 11.46lbs. Right now I have lost 11.46 pounds from my previous weight. This new treatment has seen me lose approximately 1lb per week because I tend to eat less on this treatment. I am going to start drinking the protein drinks on those crappy days now though. It took me 2 hours to drain that much liquid while last time I went in the rate was much slower and I was there for closer to 5 hours. The nurse suspects that there is a bigger tube in there this time which I can see. If I get drained weekly then the amount is much more manageable and since I monitor my weight I will know when I need to get drained. Mel will need to take an oine course to learn how to hook up the bag and disconnect it. Hopefully she will be able to pass the rigorous test. I never realized how much eating sucks while things shift internally, it feels so odd. Food is starting to not taste so awesome today but that is ok. It is still tolerable. My palliative care asked me if I was getting thrush and I said no it is fine, I think that the mouth rinse is working, it is slowing down the sensation. I have also been keeping my pills with me which results in me not missing my afternoon dosage. In something that should surprise no one when I follow my medication properly it works wonders.
The difference between our two kids is night and day. When Xavier was young we never potty trained him and he decided to do it himself. With schoolwork Xavier has a drive to succeed and will manage his homework on his own and finishes most of it at school and when he does not he stresses about doing it at home and makes sure it is done immediately. Olivier on the other hand is the complete opposite, and I think he is taking after me. Me and my friends lived by the adage, “it’s never too late when you procrastinate.” I remember scrambling to finish work at the bus stop, on the bus to school and even in home room. There was no real reason why we did that except for sheer cockiness that we could turn in something acceptable in time. The difference I think with Xavier is he is more like my sister who wanted to excel and be the best. He does not struggle with his work because he is disciplined, it is also what makes him a great athlete. The willingness to repeat the same motion over and over until he has mastered it. Luckily Melanie and I have learned some new terms that we can tell as encouragement at his matches. I fear though that if he hears us yell he will start laughing. In hockey though ever since he was young he never looked into the stands for my approval, he knew that regardless of what he did I would sit there silently with a scowl of disappointment like a true Asian parent.
It is easy to overlook all of the things that someone does for you and think of things that your spouse does not do and get mad at it. But when you take the time and think of all the other things it far outweighs the few negatives and changes your perspective. Positive intent. Just think of all the positive things. Sometimes I can think to recite words that I read and rewrite. Every morning Mel makes sure that Olivier is ready in the morning and prepared everything for him. We use to do this jointly, but now it is her. I love her for taking care of our child whilest she abandons our eldest constantly to fend for himself. Mel helps me pack my stuff and make sure I have everything for when I am at the hospital. I love that she makes sure I have enough food and when I do not she offers to bring some for me. Mel offers to drive me to my appointments and disrupt her mornings so I can attend on time. When my medication needs to be picked up she is the one that does that as well. She will research any potential interactions that I may have with my treatment after learning about the alcohol. When she learned that I was going to finish early she dropped everything that she was doing. In every daily action that she does she prioritizes me first. She moved a meeting with her boss to come pick me up. I was slow getting out so she proceeded to come in and help me out. She refused to carry me out like a princess but she packed my bags and carried them, leaving behind my Boss headphones. I told her that I actually liked those so I wanted to keep them. I suspect she wanted to “lose” them and then be the savior and find them for me. She does not need to do that, I love her for everything that she does for me. Melanie deals with the kids schooling and homework. I can tutor other kids who struggle and be patient with them. I am not sure how patient I could be with my own kids, especially when their errors are preventable. I love Mel for dealing with the teachers so I do not have to. Olivier has tough shoes to fill as his brother consistently finished top or near top at everything and was quite athletic as well. Olivier has his own strengths and once he learns to harness it properly it will really shine. His creativity and brilliance is wasted in this academic setting. I love that Olivier forgot graph paper and we tried printing some, but the printer is not working so Mel drove to get some. I love Mel for noticing that the skin on my legs were dry so she moisturized them. I love that Mel will bring my dirty dishes to the kitchen so I can preserve energy and she does it without judgement or complaint. I love that Mel does not see all of this as a burden and appreciates anything that I do. Today my capacity is at 50% or a normal day after drainage and right now energy levels are at about 5% where moving around the bedroom is a bit of a struggle now with the discomfort of the tube, stitches and organ movement. Despite all of my needs and requests from myself and Olivier Mel will carry the load of the family on her shoulders alone. I love her strength and resilience to do all of this with a smile and not show any annoyance at all. When you think of all that she does, when she messes up a small thing I need to remember not to get upset as she is literally carrying our world on her shoulders.
Quoc Hao