Good news continues

Yesterday’s MRI scan shows no active MS lesions and no lymphoma. Great news!

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Next scan this Thursday

We celebrated Thomas’ birthday party last Friday. His last party seems an eternity ago, back then I was still waiting for the diagnosis. So much has happened last year, and even though my last hospital stay ended only five months ago, it feels like a decade ago.
My next MRI is this Thursday (5th of April). Originally it was planned for mid-May, but it was moved up to take place before my vacation (I guess a slot freed up). The neurologist promised me to call me on Friday with a preliminary ‘outcome’. At first, I wanted to cancel the scan and stick to the original date in May, but aside from emotional considerations, there seems to be no reason to postpone the scan.

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Diving

The family and I are going on vacation to the Philippines. We will mostly stay at the house of Adrienne’s parents in Manila. But for four days Adrienne and I want to go diving on Pandan island. Diving does not require a great deal of effort but being deep underwater has risks. To be able to dive the guidelines (and thus every respectable dive shop) requires you to either be healthy or to have a recent medical checkup by a certified medical doctor.
The first specialists that I contacted told they could not check me because my case was too complicated for them. In the end I was checked up by the sport medical doctor of the Jeroen Bosch hospital, who also consulted my neurologist and hematologist.
There is no reason why I can’t dive, and I got my certificate. Let’s see how it goes!

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Graduation of my last Ph.D. student

Mohsen Ghafoorian, the Ph.D. student I supervised since 2013 graduated on March 8.
Mohsen was there when I was diagnosed with MS, when the disease progressed and I had to stop supervising four other Ph.D. students, and when I was diagnosed with brain cancer last year.
It was a great pleasure to be the first one to address Mohsen after he received his title in an official ceremony. Not only did Mohsen perform excellent scientific work. Some days my MS made me slow, sometimes my speaking was slurred, or my thinking clouded. On these days I felt inadequate as a supervisor, but Mohsen never made me hesitate to ask for an explanation, and he always took time to discuss ideas. I left our meetings with a great feeling, a sense that I did contribute, that I was heard, and that my opinion was valued.
For now, Mohsen was my last student. Hopefully, in the future, I will be able to co-supervise a new Ph.D. student.

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Not much happening

I guess that no news is good news. Not much is happening at the moment. I still have my ‘regular’ MS symptoms such as balance and energy issues, but apart from that, things are just fine.

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Forty

I turned 40 yesterday. The big four zero. Twenty years ago, I had the feeling that when you hit thirty you are old, and forty is ancient. But since 2004, when I met my wife Adrienne, every birthday has felt like a reason to celebrate. Every birthday I could look back on all the great things that happened the past year; fantastic vacations, the birth of our children, doing work that I loved, etc.
After the great results of my last MRI scan, there was an extra reason to celebrate my fortieth birthday. I didn’t feel ‘really old’, but more like ‘great to have reached the age of forty’.
I, of course, hope to add many years to my age, but even more, I hope that on every birthday I can look back at the past year and smile at the wonderful things that happened that year; my amazing family, my great friends, the things that I did the last year, and the new people that I met.

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I’m not drunk, I have MS

Twice per week I attend a physiotherapy training group. During the Monday session I practice my balance with various exercises, and on Thursdays, I train my muscle strength. Yesterday I slightly overdid the exercises, making my legs so tired that they feel like pudding today. As a result, I spent most of the morning sitting on the couch. In the afternoon I had to pick up Thomas from school. His schoolhouse is close by, so I walked like I do every day. This afternoon my legs were extra wobbly, and it cost me some effort to steer them in the right direction.
I overlooked a car that was slowly driving in the parking lot that I pass on my way to school. When the vehicle crossed my path I wanted to stop, but my wobbly legs reacted a tad bit late, and the car had to slow down as I passed.
A heavily tattooed driver opened his window to shout (freely translated from angry dialect) “don’t drink so much, and watch out!”. I answered that I had MS and that too much drinking was not the problem. Still angrily swinging his tattooed arms around he shouted: “then at least watch out!” as he drove off. I shouted back “you are right, and I’m sorry.”
This somewhat entertaining encounter reminded me of something I felt more than a year ago. Back then, there were times when I felt that my body was reacting as if I was drunk, wobbly legs, lousy coordination, distracted, and back then, a slur. Even if I don’t need one, I sometimes feel like walking with a cane, just to show that I (most likely) am not drunk.

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Good news

The scan was good! No MS activity and no visible tumor. Just scar tissue left by the biopsies. Great news!

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Nervous

Tonight at 19.00h is the appointment with my neurologist to discuss the MRI scan made last Friday. The hope is that the lymphomas have disappeared on the MRI, as well as that there are no active MS lesions.
I have no feeling about what the outcome might be. If I would have been a healthy person before this all started, it might have been easier to feel whether something is still wrong. I clearly was not a healthy person. Even though I don’t feel as bad as at the beginning of last year, there is still a lot of room for improvement. Then again, there was a lot of room for improvement in 2016 as well. What I am trying to say is that I am totally in the dark about tonight’s appointment.
On my blog, I have mainly been talking about my cancer, but multiple sclerosis by itself can also suck a great deal. The chemo that I had followed by a stem cell transplantation is considered to be even stronger than the most effective therapy for MS. Finding MS activity on the MRI scan also has unwanted implications.
For now, nightmarish images of a new brain biopsy, new chemo’s, new hospital stays, and further progression of my MS float around in my head. In seven hours we will know more.

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Happy new year

Happy new year! Last year has been a turbulent year for me. It started with feeling sick at the beginning of the year, and an ominous finding on my MRI scan at the end of February. After a long diagnosis trajectory, I started with a harsh chemo scheme in May. The whole treatment scheme took until the end of October. From then on I am recovering at home. To say that 2017 kind of sucked healthwise for me, is somewhat of an understatement.
But apart from the hospital stays, biopsies, uncertainties, and treatments, there were also plenty of enjoyable moments. Even though 2017 sucked, I wouldn’t have wanted to miss it.
Like last year, I created an overview of the year in pictures. If you are interested you can check out my iCloud album.

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