Day -6

According to the treatment scheme, I am now in day -6. On day zero I will get my stem cells back. Today they administered carmustine, it made me nauseous and caused my face to hurt. The chemo was administered over at two hour period, luckily after that, the side effects cleared up. All that remains now is tiredness and a bit of a headache. Hopefully the chemo tomorrow will not have many side effects. None of the nurses here have any experience with the drug ThioTEPA, so they can only speak of possible side effects from literature and not from their own experience. The chemo will be given twice a day, once in the morning for two hours and once twelve hours later. I will have the same on Sunday.

Today Adrienne and te kids came over to visit. I was a tired and nauseous when they arrived. Adrienne took them to  kinderstad (a large indoor play area, on the top floor) so I could rest and the kids could play.. We had some time together when they came back so they could check out the ward, and as Adrienne brought dinner, they could eat here as well.

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At the VUmc

This morning I ‘checked in’ at the VUmc in Amsterdam. The hematology department will be my residence for approximately the coming month. Tomorrow the chemo carmustine will start, on Saturday and Sunday they will administer ThioTEPA. Both chemo agents will destroy the bone marrow and one week from now my stem cells (that were harvested after the last chemo) will be reintroduced. They will repair the damage, but like last time, a weeks long period of severe shortage of white and red blood cells as well as platelets will follow. 

At the VUmc the entire hematology department is ‘isolated’, meaning that instead of having lock doors at the enterance of my room they are at the enterance of the entire department and I can leave my room and roam around the department, resulting in a less locked-up feeling as last time.

For now I have a room on my own, but when other patients develop symptoms that require ‘contact isolation”, I will have to move to a two or three person room.

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Looking for gold

Looking for “gold”

Yesterday we went to “het gouden woud” with two other couples and their kids. The playground is a former barn for cows, which was rebuilt to be a large play area with sand and water for kids. The fun thing is that in the sand and water small stones painted gold were hidden. Whenever you gathered 100 grams of ‘gold’ you could exchange the pebbles for a couple of candies or chips. It is a great way to keep the kids (and often the parents) busy looking for these stones. The kids had a great time and as a consequence, we the parents had a great time as well

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Monkey Town

This afternoon we went with the kids to Monkey Town, an indoor playground. We first planned on going to the zoo, but the weather forecast was awful for today so we decided to postpone that and do something indoor instead. It was a lot of fun to see the kids enjoy themselves.

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Tuesdays used to be days on which I was off and was taking care of Thomas and Nils. Most of the year other people were taking care of the kids on Tuesdays because I didn’t have the energy to do it. Adrienne, my sister, and my parents helped out. Today I to took care of the kids myself. We had a nice time, and even though it was exhausting, it felt good.

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Lush nose hair

Thomas’ impression of Gru and Dru from the Despicable me movie.

I haven’t written much on my blog lately. Things are slowly improving, apart from having a nasty cold, my energy is slowly getting better. Things are not yet as they were before the start of the treatment but they surely have improved from when I left the hospital after the stem cell harvest.

Together with a physiotherapist, I am working to improve my fitness. When the next treatment will start next week Thursday my health will inevitably deteriorate, so I am trying to go into the treatment as fit as possible.

Also, in some places, my hair has started growing again. Strangely nose hair seems to be the first to go and the first to grow back. I haven’t been able to come up with a convincing reasoning for this; I don’t think my nose hair is exceptionally lush.

It feels strange to get better at home and then go to the hospital to feel worse again. Hopefully, the treatment will work and it will be the last time.

Last weekend friends took care of the kids, which allowed Adrienne and I to spend time together. After a nice lunch on Sunday we picked up the kids again, and Thomas and I went to see the new despicable me movie. It was fun to watch the movie together.

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We went to “Sprankenhof” a farm where we could pick berries, cabbages, tomatoes, pretty much everything that was in season. It was great fun for the kids and we have some fresh fruits and vegetables.

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Updated chart

I updated the treatment schedule. Hopefully, apart from adding the final dates, this chart will not be altered anymore. Of course, I can’t help but think about the fifth of October when I will be admitted to the VUmc, for the strongest course of chemotherapy, followed by another long period of isolation.
A difference to my stay in the Spaarne hospital is that the VUmc has isolated the whole hematology ward, and because of that, patients can roam around and interact with each other. A downside is that most rooms are shared, and have beds for two to three people.
The fifth of October is three weeks from now, so I am trying not to worry about what is coming too much, and enjoying the days at home.

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Not the Philippines

On Sunday evening we biked to the Engelermeer, a place where lots of people hang out on the beach or have a swim… when it is warm and sunny… Thomas thought that even though it was windy, cloudy and cold, it was a good time for a swim. I guess spending a month in the Philippines somehow must have skewed his view on the Dutch climate.

After about ten minutes in the water, reality, and the shivers, struck. Click the picture for a youtube video.

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All you can eat sushi

When the immune system is compromised, and not working optimally, certain foods need to be avoided. Raw cheese, unprocessed muesli, raw nuts, raw meats and raw fish are amongst the things that should not be consumed, as they most likely contain bacteria or fungi. Sushi from an ‘all you can eat’ restaurant is probably leading the list of things you should not eat when your immune system is suboptimal. Sushi is Thomas’ and Nils’ favorite restaurant food, and they had been asking when we can go out for dinner again. Last week the hematologist told me that with my immune system I could eat everything again, and I need not pay specific attention anymore until my next treatment.

Therefore, yesterday evening we went out for sushi.

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