Thomas’ sleepover

Together with the nurses we arranged for Thomas to be able to sleep over. They wheeled in a second bed and Thomas and me spend an evening, night and morning together. We had a great time, it was definitely worth the extra energy it cost.

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Day +16

I haven’t had a fever since I wrote about it on day +14.
The white blood cell counts are what matter for discharge from the hospital. The threshold for all types of white blood cells is 1.0 (1000 cells/mcL), my level has grown to 1.3. Apart from the total amount of white blood cells they also look at the amount of neutrophils. White blood cells can be subdivided into neutrophils, eosinophils, basophils, lymphocytes, and monocytes. The neutrophils are the first responders to attack new bacteria or fungi. That is why their level is important; they pretty much do the work of the antibiotics and anti-fungus medicines.Their level has to be at least 0.5 before discharge. Today my level was 0.46, reason enough for the doctors to believe that later today it will surpass 0.5. They have stopped my antibiotics and anti-fungals.
If all continues to go well, and I do not develop a new fever I can go home tomorrow.

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Day +14

Thomas’s ‘ghost’ on my IV pole accompanies me on all my strolls

This morning I again woke up with fever. Later in the morning I was sent for a thorax X-ray, but nothing was found. The fever also disappeared after a few hours. I am regularly taking paracetamol, which in addition to reducing pain also reduces fever. Perhaps that’s why I have fever in the mornings (they give me the last paracetamol at 22h), and for the rest of the day maybe the fever is suppressed by paracetamol (they give them at 6h, 12h, 17h and 22h). If I again wake up with a fever tomorrow I might be sent for a thorax CT and bronchoscopy, as a lung bacteria or fungus could be the cause). Let’s see what will happen tomorrow, I am also curious about the blood results of tomorrow’s lab.

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Day +13

Today I woke up with a fever and I had serious tummy ache. Luckily the fever went away after a few hours and the tummy ache got a lot more bearable after I was given 10mg of OxyContin (an opioid painkiller). My hair has started falling out again so I asked my parents who were visiting to use my shaver to remove the spotty parts that hadn’t fallen out yet. My blood values were also measured and both the red and white blood cell levels showed an increase (the platelets were still low), so this means that my body has started to climb out of the dip. Hopefully it won’t take much longer. After three weeks here I am getting fed up.

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Day +? I forgot

My view these past days

I have forgotten how many days have passed since my stem cells were introduced, maybe it is day 11? I have to ask one of the nurses. I developed a lot very localized pain in my colon on Saturday morning, with a 38.8C fever. They took blood for blood cultures, and started me on a potent broad spectrum antibiotic. To suppress the pain they also connect me to a continuous morphine pump. Today I am feeling a bit better, I have been out of bed to walk a few rounds over the department, and the tummy pain is less. The last days I have been extremely tired, and subdued. I spent most of the days either half or fully asleep in bed. I asked the doctor to stop the morphine this morning and even though my pain is not yet completely gone it is much less than before. As a consequence of stopping the morphine, I don’t feel so drowsy anymore. Hopefully soon my blood values will rise again.

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Day +7

My blood counts have dropped, my platelet count is now 4 and the normal range is 150-400 (in some arbitrary units) and my hemoglobin count is 5.3 and the normal range is 14-17 g/dl. My counts are so low, that I am getting a bag of donor platelets and three bags of red blood cells. These transfusions will hopefully make me a bit more energetic and the platelets will make my blood clot again (I noticed that there are small hemorrhages on my skin and blood in my nose).
Together with the platelet and the red blood cell counts, the white blood cell count is extremely low (they report <0.1), which means that I am very susceptible for infections. White blood cells can’t be transfused from a donor, these would recognize the cells in my body as foreign and attack them. To minimize the risk of an infection, I am given many antibiotics and anti fungals. For the rest I am having tummy ache and generally just don’t feel great, but it is more than bearable. Today Thomas and Nils came over for a visit, but Thomas was complaining about tummy pain and Nils sneezed, so unfortunately they quickly had to leave again. It is better to be safe than sorry as an infection, when uncontrollable, can be fatal.

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Day +4

The past weekend has been mostly nice. Adrienne and the kids stayed at a friends house here in Amsterdam this weekend and they visited me every day. At times when they enjoyed the playgrounds and were playing in ‘kinderstad’, I took my much needed rest. It is nice that the kids don’t find visiting is boring. My parents also visited on Sunday which was great. I understand that Amsterdam is far away, I am grateful that people happily take the time to travel here.

They started me on the antibiotic ‘amoxicilline’ after they administered my stem cells. I had an allergic reaction to this and my torso and groin developed a rash and started itching. They switched medication on Saturday and the rashes and itchiness have reduced, improving my sleep.
I have officially entered ‘the dip’ today as my immune system is virtually non-existent. Next to the white blood cells, the number of red blood cells and platelets have dropped as well. As a result of the low amount of thrombocytes, I am bleeding more quickly. Everyday activities are extremely exhausting at times. This morning I even had to take a rest in between brushing my teeth and having a shower. Some parts of the day I feel ok, and at others I have tummy ache and today I had to throw up. It seems unpredictable. It is all part of this treatment and I just have to ride it out.

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Friday the 13th

Today was Friday the thirteenth, luckily I am not superstitious. It was a relatively good day. I didn’t feel nauseous anymore. My mouth is still hurting and I am very tired, but nonetheless it was a nice day. Adrienne and the kids visited, and they had a nice time. Together with Adrienne the played in Kinderstad. When I was in the neurology ward I accompanied them. Of course now I can’t leave the hematology ward, and I also needed the time alone to recover from the family‘s energetic presence.

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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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