I had my first treatment with the new procedure today. The volunteer saw that the sign by my station had “new patient” so she came by and offered me one of the quilted blankets. The nurse I had today was not one that I have had before and we told her that this was just a new procedure and that I am a long time patient. Initially the nurse told us that we could be there for 5 or 6 hours. I was not expecting that and actually did not bring enough food to last that long. This new procedure was quite different and I have to say that I am not fond of this as it kicks my ass. One of the things that I probably dislike the most is loss of cognitive ability and lack of control. I tried to do some work, but it was so difficult that I could not type. Mel had stepped out and it was hard pulling my laptop out of my bag. Typing was so strenuous and I was making mistakes and struggling with typing speed. Moving my fingers was slow and laborious. I could also barely keep my eyes open and thinking was so tough. I had to take a nap it was so bad and I slept through a large portion of my treatment after I had finished eating everything that I had. I only get this treatment the first couple of times of the IV benadryl drip. I did not think it was going to be so bad because it is benadryl, but reading up on it one of the side effects is severe drowsiness and heavy sedation. A lot of patients love it because you enter a deep sleep that is hard wake up from and it is a restful sleep. They had to take a couple of different things with me and I woke up at what I think was a light touch. Mel would know better and I should ask her. We ended up finishing quite earlier than the 5 to 6 hours and we came home where I went straight to bed. I think that we were done around 1:10 and we came home and I went right to sleep and woke up around 3:30. During the session I could feel the fatigue in my body and it was effort to just walk around. My whole body feels quite fatigued which surprised me. I will not be working out my legs today because I do not want to crawl around the house tomorrow. I am getting my treatment changed from Friday to Thursday as we tend to go to hockey tournaments and leave a lot of Thursday. I will definitely not be able to drive on days where I get treatment as cognitively it is unsafe. I am so tired that it is difficult to register a lot of things and Mel said that at times I had a blank stare. I just wanted to close my eyes and sleep at those points. In the evening I was fine after I woke up. I think the key will be to not force the sleep and just embrace it and go down right away. I can put on my headphones and sleep and when I wake up I should be good and not too tired. I will make sure that I pack one of my eye masks to keep out the light. The nurse was wonderful and she turned off the overhead light. What Mel thought my treatment regine was and what they are doing is different. On weeks 1 and 3 I get both drugs, and in week 2, I get one of the drugs, a rest week and then back to the regular cycle. I will be meeting my doctor in the 4th week and we will see how things are. It seems that right now the neuropathy is not bad, the taste buds have decreased a bit but I am not sure how bad it is and the texture issue. I will track that over the next couple of days. I am sweating a bit when I sleep and it always scares me a bit and makes me wonder if I wet myself or not and I check quickly to see. With how fatigued I was today it was quite the concern. Having 1 washroom right now sucks, and I got up to pee from our couch by the coffee area to our washroom. Mel was in there so I was delayed maybe 90 seconds and I have lack of control that I dribbled a bit of pee. But since I have Depends on it was not too much of a big deal. It was an annoyance but a minor inconvenience. If I am not overly fatigued I feel that I can control that much better. With the steroids it does increase my appetite and I think that I have eaten quite a bit today and I will probably eat two more times before I go to bed tonight. Last night I was up at 3:30 as I had to go pee. I am not sure if I was nervous about the appointment today or not and it impacted my sleep. I expect that tonight I may not be able to sleep well as the steroid impacts it considerably. I am not sure if I should be taking any more drugs tomorrow, I think that I may to slowly wean myself down from 12mg. In the past they said that I should when I was getting 8mg. I love the fact that I do not have to bring home a bottle though and that really helps. I will need to see what the side effects are in the next couple of days and adjust accordingly. The cognitive decline and fatigue is what annoys me the most but I may need to just roll with it and accept the fact that I can not do work during treatment. I have been told that the oral Benadryl is not as bad as the IV drip so it might be ok. I am not sure if I have taken Benadryl for much in the past, but I do not remember being so drowsy. Of course if I was not feeling well at the time I probably wanted to sleep and would have went to sleep right away so it would have been a non-factor in regards to that.
This weekend should be relaxing. Mel and Xavier are going to go help out Mel’s father with some concrete pouring tomorrow and then on Sunday we plan on going to Manitoulin Island and hopefully we will get some fish and chips. We will bring a picnic lunch and try and go explore a bit. We will go on the boardwalk as it is wheelchair accessible. I want to get a walking stick to take with me on walks. I should have thought about that before and I can wear my travel cloak and it will be an awesome look. I should get a robe to really complete it. I do have a Sith bathrobe but it is cotton. I am not sure where my buddhist robes are. I should find it as it will really complete the look. Monday we will take the boys to go see Spiderman at the theater downtown with the recliner seats. It is much cheaper and I like the idea of reclining in seats. It seems so much more comfortable. I will see if the same pattern exists for this treatment with fatigue. I am not really expecting the same thing to tell you the truth as I think that without the bottle it will not be as bad.
My writing has been mostly about my life lately where there has not been a large focus on cancer. When I go long stretches without any treatment, the cancer becomes background for the most part as not too much happens in regards to it. At those times most of my writing reflects that is happening to me in real life and people get to spy on my day to day interactions. I tend to give some glimpses into work things but really refrain from talking about work too much and what shows up a lot is about cooking, hockey, Mel and the kids. Boring things in life but how I navigate it. I have been telling stories about my childhood in hopes of better explaining and reminiscing on how I got to be who I am today. There are a lot of things in there that with stories on what happened and interactions with my parents and family. Within Asian families generational homes are common and one of the expectations is that the first born is responsible for taking care of their elders. This applies for both side of the family, not just my family, but also my wifes. My parents know that I would take care of them. My father would never live with us, but if my father passed away first she would move in with us and we would need to adjust our household to accommodate it. On Mel’s side I think that it is the same where her father may choose to live on his own and we would bring in her mom. In the event that both moms had to live with us than I would look for a bigger house to accomodate both if they had wanted to live with us. The house may be chaotic but my mother has never slept along in a house and she has said she is not really comfortable with it. Even though there are things that our mothers do to annoy us, and I am sure that we do things that annoy them, we would make it all work out if the time comes for this. It is what a good filial son does. Now I am not a good filial son, but I do respect tradition and family is important to both of us so this is a no brainer for us. Besides we get the best of both worlds. Our parents get along great and talk without us. My mother would cook dinner, and my MIL would cood desserts. My MIL would wash the clothing and my mother would fold everything crisply. It is a winning combination. They both would clean, but my mother would “clean” first and then my MIL would go behind her and do a better job. My mom does the Asian style to make it good enough, while my MIL has a far higher standard. It is a win win situation for us if this happens. When my grandmother came to us when I was younger I do not think that I appreciated her, not like my kids do. I was not necessarily as respectful to her and saw her more as a nuisance as I was responsible for watching that she does not wander around at times. I resented it because it did not always allow me to go out gallivanting with my friends. I would ditch her and she would end up wandering around getting into trouble. I did not spend time chatting with her and she was left alone for most of the day to fend for herself. I should have spent more time chatting with her or being around her, but she only spoke Cantonese so I did not really want to chat with her all of the time. I am not sure what kind of a relationship my sister had with her, but it was clear that I was her favorite. I was the golden child, first child that was born in the year of the dragon. It is viewed as exceptionally auspicious, strong leadership, good fortune and ambition. It is true as well since I have the goof fortune of beating the odds of Cancer several times. If that does not represent exceptional auspicious I do not know what does. For those of you whose first language is not latin, the word comes from roots that mean bird divination where they watch the flight and actions of birds to predict good luck. In modern times it is used for promising success or luck. It is clear why I was the favorite growing up. I happened to be born at the right time and Asians hold onto their superstitions and as I was a boy I can carry on the family name. That is why I decided to have two boys. I secretly looked up all of the methods to ensure that we have boys and then ignored them all because I did not care. Though I did not want to have girls for this reason alone. If I had boys I can ignore the girlfriends and not have to hang out with them or do anything. If I had girls I would need to interact with the boys and pretend to like them and things. I did not want to do that. I would be quite all right if one of our kids turned out to be gay but I dread the nightmare scenario similar to if we had girls. Not because they are gay, I do not care about that, but because I would then need to interact with their boyfriends and fake nicecess. That is so much effort that I was trying to avoid, though I always actually got along with my gay room mate and his boyfriends. Oliviers friends are intimidated by me and think I am scary. It would have been better when I had my pre-cancer size where I was 225. It was far more intimidating. Maybe with this new treatment I can get my weight up to 175 and scare people again. I just need to make sure that we can control cancer again this time and beat the odds. It should be pretty easy according to my Chinese horoscope. I got this in the bag as my destiny has already been set.
Dr. QH Mach