Picknick at the playground


Today we enjoyed the nice weather and we had a picknick with the kids at a park and playground. I am doing well although I have a cold now and I am doing a bit worse since Saturday. It is really difficult to say what is causing what, when I had a cold in the past also my MS was worse. Last Friday I met with the hematologist. I was doing very well that day (and the days before). My balance was better, and my speech is much better. It felt like a year ago, so that is good news.

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Picknick at the lakeside

Today we had a family picknick at the lakeside. It is getting colder, but it was fun nonetheless.

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Last day of course one

Today is the last day of course one. I am tired, bald, and I have a bit of stomach pain, but for the rest I am doing alright. Course two starts on the 13th of June.

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Saving money on shampoo and gel

Yesterday my hair started falling out. Already when washing my hair in the morning my scalp felt different, a bit hurting when rubbing on if. Then if I pulled my hair softly a lot of hair came out. So time for a shave. The kids helped to shave it all off. For some strange reason, I feel like listening to hardcore music and piercing my ear.

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The last chemo of the second part of the first course

This afternoon I had the Methotrexate (MTX) IV. This is the only chemo agent that they will give to end the first course. Based on the MTX level in my blood, they will have to administer an antidote, every six hours starting from tomorrow 12h. This will for sure last until Friday.
The hematologist told me that my white blood cell counts were low and that they will keep me in the hospital until these reach a higher level. Monday was mentioned, as a likely, but early, day to go home. So up until then, I will be here, let’s hope I can get some sleep between the toilet visits to rid myself of all the additional fluids they are giving me.

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Back for the second part of course one

The past days were nice. The weather was amazing, we had some great outings, awesome visitors, and I was feeling better every day.
I just checked back into the hospital for the second part of the first course of treatment. It feels like going to the hospital to feel worse instead of better, so I am doing my best to keep the longer term plan in mind.
Tonight at 20h they will start with the hyper-hydration which will go on at least until Friday, so I expect to swell up again. Tomorrow at 12h they will start with the second infusion of Methotrexate, the bright yellow stuff.

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Enjoying the nice weather

Today we enjoyed the nice weather. Luckily my new cargo-bike is electric, which makes it a breeze to bike around.
Fortunately, I don’t feel any nausea. Unfortunately, I am incredibly tired most of the day. As an MS patient, I am somewhat used to being excessively tired sometimes, but this is on a whole new level. At times it feels as if gravity is doubled. I find it hard to explain this “lassitude”. This fatigue is not due to lack of sleep or the extreme effort needed for the activities of the day. It is as if almost all energy has been drained from my body. I am playing Legend of Zelda Breath of the Wild on my new Nintendo Switch (which is awesome by the way) when the main character has only one heart of health left and no more stamina, his animation looks the way I feel sometimes.

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Today I was sent home. My blood values are ok, the level of Methotrexate in my body is low enough, and I feel ok. I had no acute reactions to any of the chemo agents, Methotrexate, Teniposide, and Carmustine. I do feel bloated still and my colon is hurting somewhat, but this can also be due to the high dose of Prednisone that I had to take up until today. Overall I must say that these first days have not at all been as bad as I anticipated. From what I had seen on TV (always the best reference), I was expecting the hard times to start as soon as the chemo agents would enter my bloodstream. I understand now that there is a delay as long as that no acute adverse reactions occur. The cytostatics are inhibiting cells from dividing, but it will take some time for the already existing cells to die. Therefore the real side effects mostly occur later. For now though, apart from being tired and having pain in my colon, I feel alright. On Tuesday the 30th I have to be back for the second part of the first course.

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