Month: October 2017

Day 0, getting the stem cells back

I just got a part of my stem cells back. They harvested 38 million stem cells / kg body weight, but the maximum that they give back is 5 million (more has not shown any additional benefit). Reinfusing the stem cells took only ten minutes. Now it is up to them to repair the damage the chemo’s are doing. The dip in which my blood cell counts drop to zero will start any day now. Without reinfusion of the stem cells recovery would take 7-8 weeks (with all risks of infection extended), with the stem cell reinfusion they expect the dip to take 2-3 weeks.
I still feel somewhat nauseous and my mouth has started to hurt, this could indicate the start of mucositis, something very common after the chemo’s and unfortunately very painful. I can just hope that this time will pass soon without too many negative events.

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Day -1

Tomorrow I will be getting my stem cells back. Today I still felt nauseous and fatigued, it is clear that the chemo’s are having their effect. Blood results of today showed that I am not yet in the dip, but that my blood cell counts are dropping. Many patients celebrate the reintroduction of the stem cells as it were their rebirth. I don’t yet feel like celebrating, there is still a weeks long road to go. I hope that I will not get a nasty bacteria, virus or fungus while my immune system is non-existent. I feel like celebrating when this is all over.

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Day -2

Today I felt a bit sick and nauseous, Eventhough I din’t have much energy, I still walked a few rounds over the department, I spent some time on the cross-trainer and I even trained my muscles with the fysio therapists. There were no visitors today, so I spent the afternoon and evening with Netflix.

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Day -3

I am not feeling too great today, I feel a bit nauseous and tired. I still managed to walk around a bit and to have a work-out with the fysio therapists. They have a nice exercise room here. The rest of the day I spent in bed. I hope that tomorrow will be better and not worse.

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Day -4

Again ThioTEPA was administered in the morning at late at night. Luckily I could sleep during the admission of the chemo. In the afternoon my parents and my sister visited which was great. It is a long drive to get here, and I appreciate the effort. My tummy is feeling slightly strange. Probably the chemo is starting to cause some inevitable side effects. 

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Day -5

They administered ThioTEPA in the morning around 11.00 a.m. and twelve hours later at 11.00 p.m. I had no direct side effects from this chemo. I feel just a bit nauseous but that could also still be a result of yesterday’s chemo. The openness of the ward makes a big difference, I can walk around, talk to people and make use of the exercise equipment if I feel up for that. I notice that feeling at peace with the schedule makes a big difference in my attitude. In the Spaarne Hospital in my previous course, they made a last minute change to the treatment schedule which they only explained after the chemo which was in the weekend. Now I have the feeling that this treatment is the best and also for the MS, that helps a lot. 

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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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