One day before the appointments at the VUmc

Tomorrow are my appointments at the VUmc in Amsterdam. The meeting with the hematologist should bring clarity about the remainder of the treatment. I will start with an MRI scan. Hopefully, it will show a positive effect of the first two months of chemotherapy at the Jeroen Bosch hospital. The results of this scan will only be communicated to me on the 20th. They told me that the outcome of this scan does not alter the remainder of the treatment.
I will also meet the professor of pathology who only recently completed the final assessment of my brain biopsy specimen. She offered to meet me so that she could inform me about their final judgments and explain why they concluded that a primary central nervous system T-cell lymphoma is considered to be the most appropriate diagnosis. Apparently, the biopsy specimen revealed oligoclonal T-cell proliferation. The definition of cancer is that it is monoclonal (a single cell divided, resulting in clones of itself), oligoclonality implies that a few different cells multiplied themselves. Oligoclonal T-cell proliferation is super rare, and occurrence in the brain is undocumented. I am curious what the pathologist will tell Adrienne and me tomorrow. Most importantly they assured me that they believe that the treatment that I am following is the most effective.

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I saw the image on the left in a comment on a fellow MS patient’s Facebook page. It reads “Be brave enough to hold on to the hope that life will be beautiful again.” Typically I ignore pictures of quotes on Facebook because I despise them, but this time I felt I had to reply. So what better way to respond than by posting another picture of a quote. My cheesy quote reads “The trick is to enjoy life. Don’t wish away your days waiting for better ones ahead.”

The reason why I had to respond is that I disagree with the aphorism in the first image. The most important thing that I learned from growing up around family members with progressive illnesses is that you should never stop trying to enjoy life now. I understand that days can be sh*t and that you hope that things will be better tomorrow. There are plenty of days in my own life that I wish will be better in future. Nonetheless, waiting for better days does not require bravery. I believe that finding a ray of light on even the darkest days is a real test of one’s spirit.

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Busy days

Thomas getting his VVE (for regularly doing “homework”) diploma in school.

I feel better, most of the time I no longer feel extremely exhausted and my stomach ache has slowly disappeared. That is great news as it enables me to do more things, meet friends, attend Thomas’ diploma ceremony in school, bike around, etc.

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My story on Facebook

Back in February, I started this blog to keep my friends, colleagues, and family members up to date, without having to tell the same story over and over again. At the same time, writing down what was happening gave me the time to structure my thoughts and to process all the things that were going on. The only downside to continuing this blog is that people can be very interested in my situation, and can keep up to date with every detail without me knowing about it. When someone calls, visits, sends an email, card, or text message, I am instantly reminded that they care. Unfortunately, I can’t tell if someone obsessively reads my blog. I enabled ‘comments’ on my posts so that people could leave a note, but I understand that this is somewhat cumbersome (I enjoy reading them though).

On Sunday I decided to post my story, with a link to my blog, on Facebook. I had been thinking about sharing my story on Facebook since I started my blog, but I hesitated. Facebook normally is a place to share happy events. Pictures of babies, travels, food, kittens, and misplaced quotes usually fill my timeline.
Facebook tells me that I have 288 ‘friends,’ and among these are people that I have never even met in real life. I could not imagine that these ‘friends’ were interested in reading about my unfortunate situation. There are no pictures of adorable cats on my blog, and my ‘food picture’ is not nearly as appetizing as the photos that usually fill my timeline of fancy dishes served at exotic restaurants.

Regardless, the replies I received to my post were heart warming. Thanks to everyone that took a moment out of their day to read my story and leave me a message.

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Halfway there

The second course is over, I am home again. If everything continues to go fine, this was my last stay in the Jeroen Bosch hospital. The first half of the treatment is done. The harsher part in Amsterdam at the VUmc is next. I still don’t have any details of this treatment. I don’t even know when it will start. I will have a meeting with the hematologist there on the 14th after my MRI scan and hopefully, I will know more then. Not knowing when I will be in the hospital is also difficult for planning the kid’s vacation. They will stay in Manila with their grandparents for a few weeks, Adrienne will bring them, but we just have to guess what would be the best dates for this trip. For now, I still have some pain in my stomach, but it is not too bad.

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Thomas visiting

Thomas came over for a long visit. Adrienne brought him and he stayed the entire afternoon. We folded a paper snake for Nils, watched a bit of Netflix, played Mario Kart on the Nintendo Switch and we went to the hairdresser in the hospital. Unfortunately, I wasn’t feeling too great today. I have a bit nauseous feeling in my stomach, perhaps caused by the antibiotics I’m getting as a prophylaxis, perhaps caused by the chemo. Nonetheless, we had fun.

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Hopefully the last methotrexate 

The last course of methotrexate is running. This is the only chemo agent that remains of course two. Hopefully, the MRI of the 14th will show a positive effect of these two courses. If so then this is my last stay at the Jeroen Bosch hospital for the treatment and then the rest will be done at the VU. I will have to stay here until Friday or Saturday, depending on my blood level of methotrexate. As long as this is above a certain level they have to continue with hyperhydration and the administration of folic acid, a sort of antidote.

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I wasn’t feeling well yesterday afternoon. I developed a fever and my documentation said to call the oncology department as soon as I developed a fever > 38.5C. My thermometer said 38, 38.2, 38.3 and around 18.30 it said 38.6C. So I called the oncology ward. I had to come to the emergency room, where they took blood, urine and did a thorax X-ray. By that time, my temperature had dropped to 37.1C. Since my immune system is compromised, they are extra careful. After the exams and after the blood test showed no infection, they sent me home. I developed a clogged nose and snottiness, so some cold virus has likely infiltrated my nose. The nurse told me today that the hematologist sees no reason not to start the chemo tomorrow, so back to the hospital tonight (before 20h), for the last part of course two.

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‘t Kwekkeltje

Today we went to ‘t Kwekkeltje, a playground for the kids, half an hour away by bike. It was nice to see them enjoy themselves, but an hour biking back and forth, and being in the playground was extremely tiring for me. As I said before, it is impossible to discern ‘regular’ MS symptoms from side effects from the chemo, or symptoms caused by cancer. Tiredness and brain fog (chemo brain), are well known, and common, side-effects of chemotherapy, and balance and speech problems correspond well to the location of the cancerous lesions in my cerebellum. But at the same time, these symptoms are not new to me. I had them a year ago, and also then they were much more pronounced when I was tired. I have to keep reminding myself that my ‘baseline’ is not being symptom-free. Many times per day, I am trying to feel whether the tumors are shrinking, wondering if the chemo is working. When I feel myself being extremely tired, when my balance is off, or when I feel ‘detached’ and have difficulty to concentrate, I doubt whether the treatment is working. The thing is, I don’t think I feel any worse than a year ago, before this whole cancer story started.

On the 14th of July, I have an MRI scan planned at the VUmc. The results from this scan will indicate if the first part of the treatment was effective. It is probably the only way of quantifying this; it will likely be a stressful time to wait for those results.

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On the 18th of May, I already posted about the kids’ book Chemo-Kasper. It is a book by Helle Modzfeldt about Chemo-Kasper, a chemo-agent. He eats cancer cells, but his eyes are bad, that is why he needs glasses. Sometimes, when he is attacking bad cells, he loses his glasses. Afterward, he can’t see very well and he starts eating healthy cells by accident. This can cause all kinds of problems in the body. When he eats hair cells you can lose your hair, or when he eats cells in your stomach, you can feel sick. Some of the bad cancer cells also tend to hide, so that Chemo-Kasper can’t find them. Because they multiply fast, these unfound cancer cells will cause problems in the future again. Thomas loves this book. It explains cancer and chemo very well. There is a Dutch Adobe Flash version online, and a German PDF. We ordered the book, and Thomas is showing and explaining it to everybody. Yesterday we drew the main characters, the cancer cell, Thomas the patient and Chemo-Kasper. I laminated them so the kids could play with them in their bath.

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