Today we went to the Efteling. It was a beautiful day, weather wise, but in a lot of other ways as well. Adrienne rented a mobility scooter for me, which helped me to get around the park the whole day. The kids loved to sit on my lap and explore the park that way. I hope that in future I will be able to walk around the park all day on foot again, but if not this is a great option.

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My new cargo bike

My new cargo bike

A few weeks ago I ordered a cargo bike with an electrical support motor. It arrived a few days ago. Today we had a nice ride and picknick with the kids. The bike is excellent, especially now since I don’t drive our car. The only thing that was missing today was warm weather.

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They called

They indeed called. Well, the neurology department’s secretary called to inform me that an appointment has been made at 12h on Monday. This appointment will be with my neurologist and the hematologist. In this meeting, they will talk about the diagnosis and the treatment plan. The secretary told me that if I wanted, I could look at the biopsy samples myself in the pathology department after this meeting, my neurologist could arrange that.
I still have no clue what the diagnosis is, and at this moment I also don’t know anymore what to hope for. Clearly, there is something going on in my brain that needs treatment as it doesn’t seem to go away by itself.
It is hard to believe, that even after ten weeks of being told that there are multiple cancerous lesions in my brain, I am still only at the beginning of this journey. There will be many more nerve wrecking days ahead.

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Tomorrow they will call me

Celebrating Nils’ 3rd birthday

On the 13th of March, the title of my post was “the last day not knowing”. It is seven weeks later today, and I don’t want to use the same title. History repeats. I called the hospital on Monday and asked what the plan of action was. They didn’t know, and called me back half a day later. Tomorrow I would be called by the neurosurgeon. The person that called me couldn’t tell me about what, or at what time.

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Home again

Apart from feeling very tired and having a sore neck (the neurosurgeon had to move some neck muscles around and biopsied through the left muscle connected to the skull), I am doing ok. I was sent home, and that is where I am now. The biopsy samples will again be studied and a new appointment will be made with me to talk about the outcome.

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The biopsy left a huge scar but went well

My second biopsy scar

They told me on Friday that the biopsy could happen at any moment during the weekend, but that after 18h no new surgeries would be planned. I had to stay sober, no eating and drinking, since 0.00am and during the whole day until 18h. I waited the whole day on Saturday. At 17.30h they brought in my evening dinner and I started counting down the minutes that I could eat. Regardless of the infusion, I was feeling incredibly hungry and the food smell coming from my evening dinner in the corner wasn’t helping. At 18h I was told by the nurse that I should continue staying sober for a little longer because an OR might free up soon. At 18.20h the neurosurgeon showed up at my bed, telling me that there was still hope that they could do the biopsy soon. At 18.45h I was wheeled off to the OR. They put me to sleep in the OR and I woke up in de PACU (post anesthetic care unit). Hooked up to several devices (EKG, blood pressure, blood oxygenation, infusion, etc.) I had to stay there until 9 in the morning. They checked me every hour, just like last time. Only this time I had a very stiff neck and a hurting scar. Last time the incision was so small that it closed with a single stitch that was hardly found when they wanted to remove it. This time the cut was huge, the neurosurgeon indeed told me that he wouldn’t use the same technique as last time. I hardly slept of course in the PACU, but everything went fine. Apart from a very stiff neck, and being very tired I am doing ok. They told me that they took a lot of biopsy samples and that the pathologist confirmed that they were representative (no healthy tissue). The pathologists will work on the histology and can hopefully make a clear diagnosis soon that the hematologists can work with.

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On the urgency list for biopsy this weekend

I thought I would be going home this weekend and would be coming back for the biopsy somewhere next week. But today I had a talk with the neurosurgeons and they put me on the “urgent” list, this means that as soon as there is an OR available, they could do the biopsy this weekend.
Five weeks ago, I had a nightmare in which I dreamt that I had to redo the biopsy. That nightmare is coming true.

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Talk with the experts

Today finally I had a good discussion with the hematologists and neurologist. A second biopsy is really recommended by all specialists here. Without a definite diagnosis, the hematologists don’t know which treatment they should choose. There are still four possible diagnoses that they think of. They still think a b-cell lymphoma is most likely. Followed by an immune dysregulation, and a t-cell lymphoma. What is even more unlikely, but needs to be excluded, is a rare viral or fungus infection. Treatment with a chemo that destroys the immune system (treatment for all of the other hypotheses), would quickly make such an infection fatal. Today I should speak with a neurosurgeon about the risks and the planning of the second biopsy. Yesterday evening an MRI was made, this didn’t show any significant growth.

[update 17.30]
I was just told that the neurosurgeons only now discussed my case and came to the conclusion that they needed the input of the surgeon that did my first biopsy. He is only there tomorrow. So they will come back to me tomorrow around 17h…

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Back to square one

In the morning nothing happened, in the afternoon the eye exam was repeated, again resulting in no findings. Then the results of the lumbar puncture came in. In the cerebrospinal fluid cytology (the study of cells regarding structure, function, and chemistry), the cells appeared normal (but the sensitivity of CSF cytology varies widely (2%–32%)). They also used something that I believe is called immunological marker analysis, to study the cell surface markers, to try and identify monoclonal (cancerous) cells, again this didn’t yield anything. I don’t know the sensitivity of this test. So basically we are back to square one. The hematologist says that they will not treat with chemo without a definite diagnosis. That is why they want to go for a second biopsy. I don’t know if that is the best and I have my reservations about his. I don’t understand why they think they would find anything different from the first biopsy (the first biopsy was taken in the right place and produced proper samples). Such a biopsy has risks for serious complications. Both the hematologist yesterday and the neurologist I saw today could not answer my questions. Because it is Easter, many of the people involved in my case are not there, so I can be home until Tuesday. Only then my questions will be discussed.

So now I am home, hoping that nothing will happen. Up to now apart from being exhausted, I feel relatively ok.

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Lumbar puncture

Today they made a lumbar puncture. They had to do it twice. They tried lying down, but that didn’t work so I had to sit in the end. It was a bit painful, but after lying down and drinking a lot I didn’t develop a headache (common side effect). The results will be in tomorrow.

In the evening at 19.30h, the hematologist paid me a visit. He examined me for swollen lymph nodes or lymphoma but found nothing. He stayed a long time to answer my questions, which was nice. I understand the exams better now, but I still don’t understand their wish for another biopsy if the LP doesn’t give any new insights.

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