Last night we abandoned our child again. I was watching the OSU vs Texas collge football game on TV and OSU was winning 23-3 and I was not feeling well so I decided to go bed. I took my temperature before bed and i was 37. I was quite cold and at that time I had my heated blanket and heater. I went to the bed and turned on the heated mattress and Mel brought me out a warm water bottle that I placed on my chest. I woke up a couple of hours later and was not feeling well and we noticed that my temperature was 38.8. Anything about 38.3 I am supposed to go to the ER. We waited a bit to take another measurement and it was 38.9 so it was definitely time to go in. I have spoken in the past about when people do not want to do the treatment anymore and I found my limit. One day like this I can handle, but if this progrressed to 3 days I do not think that I could handle it mentally. I would rather not have treatment then go through this. It is too hard and I can not do it. I tried to explain it to Mel but I am not sure if she really understands. I am always cold throughout my body that never goes awa, and as hard as that part is, it is not thr worst; The hardest part is when your body is at 1% energy and something as simple as putting on slippers on the ground where you feet are is daunting and drainingl Every movement needs to be calculated and you need to recover between each trivial step. I need to pause if I want to put my sweater on or do anything. These are simple movements that involve me sitting down, when I start to move I need to make sure I take my time and move slowly and carefully plsn each step. The part that makes it difficult is the cognitive decline. If I am out for 4 days a week then I can not find an altrnative treatment, I am stuck in this cognitive haze that is difficult to navigate. After I went through triage and they saw that my temperature was 38 they gave me a tylenol and ordered blood work. Blood work was a debacle as I was poked 5 times, as they needed to take blood from both arms and one of the techs struggled and after 4 failed attempts in that one arm they decided to wait 30 minutees and take it from the other arm. At this point it was around 12:30 and it was going to be a long night. After getting the second round of bloodwork they brought us into the internal waiting room. I was not feeling great, but told Mel that I could handle this level of pain and discomfort. She laughed and asked how could things change so drastically in 30 minutes. The difference is that things are not as cognitivtely difficult then. Moving is no longer an ordeal you need to plan out. Mel and I thought that my WBC, potassium and sodum would be low but they were all ok. We saw the doctor and she was confused with the findings and could not figure out why I had a fever and wanted additional lood work and monitoring for a while. What was concerning for them though was my blood pressure. When they came around and checked my blood pressure they saw that it was extremely low and that is when we got a bed around 3:30am. I had been sleeping on and off by putting my head against the wall which was not super comfortable. Interestingly enough my neuorpathy was non-existant while I was there which was nice. They put me on saline and took some more blood and by this point I had been poked 7 times, which were not super pleasant. The nurses and lab techs were not as painless as what I normally experience in the cancer center. I had anticipated that we were going to be there for a while so I brought ear buds and my sleep mask to drown out everything. Mel crawled up onto the bed with me and we slept in 30 minute intervals for most of the night. They eventually did a nose swab and they are checking for a viral infection, either influenza or covid or something and they will be in touch if they find something. I did not enjoy this experience and I do not think that we woulda go in again if my temperature spikes, something that they did find was a slight elevation of my lactate, which is associated with an infection, but they could not find where tgat might be. We eventually were released around 7:30 and Mel was hungry so we stopped at Tim Horton’s and got her some food and some muffins so they kids could visually. see that we were back. We went right to bed but I set an alarm to watch the F1 race at 9am. I watched the first 15 minutes and then crashed and have been sleeping on and off for most of the day. I am tired today from both the lack of sleep and from the cancer treatment itself.
Last night when Mel told the kids we were going to the hospital she thought that they seemed concerned. It is interesting the way that they both handle things. Olivier asked about me and how I was doing when he saw Mel this afternoon. Xavier did not as he would have assumed everything was fine because I am back home. Olivier is more empathetic and will ask those questions, while Xavier does not seem to worry about things as much. Mel has been doing a lot of research all afternoon and the delivery method of my current drugs is alcohol based, which my body does not break down well. These chemo drugs are difficult to absorb into the body and coupled with my lack of enzymes to break down alcohol Mel is a bit concerned that this treatment should be changed up a bit. She is going to call the cancer center tomorrow to talk to the oncology nurse. She also wants me to go in for an IV, but I do not want to and would be ok if someone came here, but I have no interest in going in tomorrow for fluids. If I do not reply to texts or phone calls it is because I am tired and most likely resting.
Quoc Hao