Updating my profile picture

I had my original profile cartoon designed by a fiverr user called Ice-tea. Fiverr is an amazing website, where you can hire somebody to do a small task, in this instance to create a profile cartoon based on a picture. Unfortunately, my profile picture became outdated; I am bald and I can no longer wear contact lenses (the chemo has destroyed the cells protecting the eyeball). So I asked Ice-tea if he could update my profile picture, which he did for me.

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First part of course two done

The first part of course two is done. Today “Carmustine” was the chemo they administered. It says on Wikipedia that “Carmustine is a dialkylating agent, as such, it forms interstrand crosslinks in DNA, which prevents DNA replication and DNA transcription.”. So basically it also inhibits cell replication.
I went home around 19h. I have to be back in the hospital for part two on Tuesday the 27th of June.

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Teniposide is in

The second chemo is in, Teniposide (brand name Vumon), was administered both yesterday and today. I looked up what the mechanism of the drug was. Teniposide acts as an inhibitor of topoisomerase II (an enzyme that aids in DNA unwinding), this causes breaks in DNA, which in turn inhibits cell division, causing cell death. Tomorrow is the last chemo of this part of course two (carmustine). If nothing out of the ordinary happens, I can go home after dinner.

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The first chemo of course one is in

The first chemo of this course is in. It hasn’t changed how I feel; it only colors my pee bright yellow. Think of the radioactive rod’s color in the opening sequence of The Simpsons; it’s like that color, except I don’t think it glows in the dark (I can’t try it because the light in the bathroom turns on automatically).

Overall I must say that I feel much better than anticipated. The first course wasn’t as bad as I expected at all. I haven’t felt sick, or nauseous. I am more tired, but MS familiarized me with that already, I find it manageable by not doing too much in a day. I have a dry mouth, my eyes are watery sometimes, and I lost my hair, but to me, these are all minor, well manageable, side effects. I do have a cold now, and that aggravates my MS symptoms, luckily it seems to be getting better (let’s hope it is resolved before the chemo impacts my immune system again).

Yesterday I felt apprehensive about starting course two. I didn’t feel sick, and being at home was nice. Sometimes I have to try hard to keep the end-goal in mind. Now that course two has started, I have accustomed myself again to the hospital.

Thanks again for your cards, emails, messages, flowers, and visits. They mean a lot to me and are definitely not a bother. I feel fine, so don’t hesitate to drop me a note, or plan a visit!

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Leren Lijden

I was recommended to read the book “Leren lijden” by Martin Appelo. In his book, he explains different forms of suffering, and he talks about how to identify and deal with them. In the book, there was a prayer to illustrate the difference between fighting and surrendering, I found this very applicable.

Give me the strength and courage to change the things I can.
Grant me the serenity to accept the things I cannot change.
And the wisdom to know the difference.

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Back in the hospital for course two

Yesterday I returned to the hospital for the start of course two. I slept quite badly, having a cold didn’t help me to sleep well, and the IV pump was beeping around 3 am and 4 am. It’s nice to be back…

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The last day before course two

This morning we went to the gym of Nils. We biked there, which was nice. The cargo bike is proving to be a great buy. I have a cold, which sucks. It aggravates my MS symptoms.

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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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