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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Back in the hospital

An inpatient again

When I woke up around 4 am in the night, I noticed some headache. In the morning and during the day this headache didn’t go away, and it got worse when I bent over. A bit worrisome as I also had this kind of a headache before, when the lesions were large and obstructed the flow of CSF (cerebrospinal fluid) in the 4th ventricle. Only now it was by far nowhere close to
When my neurologist called to inform about further diagnosis and a hospital admission on Wednesday, I told her about my mild headache. She told me to come to the first aid of the VUmc, where they would make a CT scan to see if the lesions had grown and the situation could become acute fast.
After being stuck in traffic, I and Adrienne finally made it to the VUmc in Amsterdam after an almost two-hour long drive (we live in ‘s-Hertogenbosch). We arrived at the first aid at 18.30; only at 22.00h, the CT scan was made. Clearly, I wasn’t really urgent.
Luckily the CT scan showed no growth since the MRI of last Friday. Now I am staying overnight at the neurology department, tomorrow the exams continue.

What the neurologist told me they would do: 1.) A lumbar puncture, in the CSF they might see what the lesions are specifically. 2.) A new eye exam, perhaps there would be a lymphoma visible there now. 3.) A talk with the hematologist.
And 4.) what scared me, she told me that in case these exams are inconclusive, they would consider a new brain biopsy. I really can’t understand what they think they can learn from a new biopsy that justifies the risk of this operation. The previous biopsy was not taken wrongly, the samples were very abnormal, but they were not bad samples. A brain biopsy is an invasive procedure with serious risks. Also, it would mean that treatment is further postponed while waiting for the pathology results. I also don’t know what they think they can learn from such a new biopsy that could radically change the treatment. Or whether a treatment that is more radical and perhaps more risky would outweigh the risks of a biopsy. I have a lot of questions for the hematologist tomorrow.

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Bad news

I am writing this after just having had a meeting with my neurologist about the MRI scans of last Friday (7-4-2017). The MRI shows that the lesions have grown and are occupying more mass (30×25 mm for the biggest lesion vs 20×20 mm) than on the MRI of a bit less than three weeks ago (20-3-2017). This was very unexpected as I just stopped with the corticosteroids. Now the hematologist will call me for an appointment this week. A lumbar puncture will follow as soon as possible. Treatment, probably chemo, will likely start soon.

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Thank you

Up to now, this website contains mostly factual information, updates about exams and doctor’s visits. Emotions or feelings have not been part of it so far, but today I wanted to write something that doesn’t have anything to do with the exams, with future treatments, or with the medical facts. I would like to take a moment to write about all the support I have gotten, and what that means to me.

It has been, and continues to be, a long and uncertain journey. It gives me a lot of positive energy to know that so many people care about what is going on with me. I have gotten numerous emails, messages, cards, flowers and even balloons. At the same time, medical specialists from around the world are keeping an eye on my case, take their time to answer questions and provide me with feedback. There is no doubt in my mind that the best professionals are working on my complicated case at the VUmc, but it never hurts to get as many opinions as possible.

I am trying to view these new, and old, developments with an open mind. From many friends, family members, or fellow patients I have often heard: “why does this happen,” “it is unfair,” “I will never accept my limitations,” “why me,” “you have to fight,” “it is a battle that you will win,”, and “it can always be worse.” All these words are meant in the best ways possible, but my feeling is different. I don’t think that there is such a thing as a “fair” and an “unfair” amount of suffering. If there is, me having all the support, an excellent medical care team and a great health insurance, contrast sharply with a baby born with AIDS to a sick mother in a hut in a famished village in Afrika. At the same time, I don’t think it is helpful to minify your own grievances by telling yourself “things can always be worse”. I believe that whatever occupies your mind, whether it is something seemingly insignificant like a tooth ache, an ingrown toe nail, or a presentation at work; these things are important.

Acceptance to me isn’t sitting back and doing nothing. It’s having the clarity of mind to know when to act and when to focus on other things. To me, spending time with family and friends is more important than wasting it on negative thoughts about unfairness, non-acceptance, and future images of what may or may not happen.

Very often I read and hear about how patients are “fighting” and “won” their battle with a disease. It is not that I think people should “give up,” and “throw in the towel.” I believe that “surrendering to” and “accepting” the circumstances can help make the best of the current situation. Of course, this isn’t easy and it helps me enormously to see how many people care and show their support. Thank you!

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