I’m swelling up due to all the extra liquid they are giving me. When I came in on Tuesday I weighed 88.9 kg, this evening I weighed 95.6 kg. I can’t even wear my fancy Apple Watch anymore, ah well, at least it won’t complain about my inactivity.

The hospital has a special crate for kids that visit. The crate has toys, crayons, dress-up material and children’s books about cancer. I read these to them, as they explain what is going on. The book that I am reading in the picture explains cancer cells and chemo in children’s words. Unfortunately the book explains later that these bad cells are in the body of ‘Thomas’, the protagonist. Luckily I didn’t read the story word for word, and could tell the story of papa instead.

The tiger in the background of the picture is Thomas’ favorite stuffed animal. He lend it to me for as long as I am sick.

Yesterday went quite alright. Even though the Methotrexate couldn’t look more poisonous, there were no direct side effects other than very yellow urine. I even managed to get 20 minutes of exercise on the home trainer. The Prednisone that I get now every morning is giving me a stomach ache. Regardless I managed to sleep well (apart from having to get up to pee three times). The major side effects of the chemo would start in 2-3 weeks.

Today I am getting Teniposide, which doesn’t have a funky color. It is being pumped into my veins now.

This stuff couldn’t look more poisonous…

My room is ready for it. Today they did some tests, they examined my blood, lymph nodes, my heart, lungs, and asked me many questions about my history.  Now (since 20h) I am getting lots of liquids trough an IV, to make sure that my kidneys continue functioning with tomorrow’s Methotrexate in my system. I am exhausted, so I should go to sleep. To keep myself motivated I am playing a slideshow of my family pictures on my iPad, which makes a nice photo frame. Check out the video below if you are interested.

Today we went to Naturalis, the natural history museum of Leiden. They had a special dinosaur exhibition, with a real t-rex skeleton. It was nice for the kids, but also a long day for me. I wish I had more energy, but knowing that I will be admitted to the hospital for a long trajectory of chemo on Tuesday doesn’t help lighten my mood. Unfortunately, I also feel a headache and an upcoming throat ache, guess Thomas (who was sick this Friday) did infect me after all.

I made an overview of the chemo treatments that I will undergo. The first two courses will take place in the Jeroen Bosch Hospital (JBZ).  The d’s represent the days on which the admission of the respective agent happens. Progressive disease (PD) means an increase in tumor size or the appearance of any new lesion; SD is stable disease, a relapse means the recurring of disease after it disappeared. Depending on my condition and the results of my blood tests, I might be able to go home some weeks during the treatment.

I looked up the chemo-agents, and I was surprised to find that they were all super old. Methotrexate is from 1947, Teniposide (Vumon) from 1984, BCNU (Carmustine) from 1971 and Cytarabine from 1960. Their mechanism of action is different, but they all have the same outcome, killing cells that divide. Because cancer cells divide rapidly, they are killed during the time that these chemotherapeutic agents are at toxic levels in the body. Due to this cytostatic effect, the most common side effects are due to the death of healthy cells that divide rapidly. These are cells such as blood cells in the bone marrow, cells lining the mouth and gastrointestinal (having to do with the digestive organs, particularly the stomach, small intestine and large intestine) tract and hair follicle cells (this is why patients can lose their hair). The second and third part of the treatment will take place in Amsterdam at the VUmc, specifics of this section of the treatment still need to be decided.

The MRI of yesterday does not show any difference in the sizes of the lesions compared to the MRIs as far back as the 7th of April. They explained to me that this could happen with lymphoma, and this does not mean that treatment isn’t necessary. I did send my hematologist a message, wondering whether this does not imply that the cells do not divide rapidly and would therefore not be affected by the chemotherapy.

Today was mostly about nice activities. In the morning we celebrated Nils’ birthday (his birthday -26th of April- was during their vacation) at his pre-school. In the afternoon I went to see my colleagues at the Radboud in Nijmegen. It was great to say hello and talk to them after such a long time, and it will probably take a long time as well for me to come back to work again. I was called by the secretary of the hematologist and my hospital admission will be Tuesday next week, and the treatment will start the next day.

I am extremely tired today. Exhausted from everything that happened up to now, the uncertainty, the hospitalizations, exams, tests, biopsies, and then yesterday the diagnosis and treatment plan. I find it hard to imagine that these difficult weeks since February 21 -the date they told us that they probably found brain cancer- were only part of the diagnosis. The perhaps harder and even longer part, the treatment and recovery, still has to begin.

Today I had an MRI (this will be the pre-treatment reference) and a talk with the hematologist. All this traveling to the VUmc in Amsterdam is exhausting in itself. Fortunately, the first part of the coming treatment will be done in the Jeroen Bosch Hospital in ‘s-Hertogenbosch, where I live. They follow the same protocol, have experience with this treatment, and they should be able to start the treatment soon (as in next week). The autologous stem cell treatment part will take place in the VU in Amsterdam because this is only done in a select number of hospitals.

Pathology of the biopsy specimen

We just had a meeting with the hematologist and neurologist. They told me that after careful deliberation in their multidisciplinary team of experts, they concluded that the diagnosis and treatment of T-cell lymphoma would be the most fitting (lymphoma of the brain are very rare and most often (95%) they are B-cell lymphoma, so T-cel lymphoma are incredibly rare). After the appointment with the neurologist and hematologist, Adrienne and I met with the pathologist where he explained what they did and saw. The second biopsy didn’t necessarily give new information but reinforced what they found in the first one. He told that they did find clonality in the T-cells of both biopsies, that there are many T-cells and that even though diagnosis is not a 100% sure, treatment of T-cell lymphoma is beneficial. What will follow is a very long and harsh schema of chemotherapy. This likely means weeks in the hospital. Tomorrow a new MRI will be made, and I will talk to hematologist about the details of the treatment.
Primary central nervous system lymphoma (PCNSL) are not the worst type of brain cancer, of course, any type of cancer is bad. But at least with PCNSL the chances for complete remission are not zero. Because T-cell lymphoma are so rare and my case is so unique, there are no survival statistics available.