Evaluation of my 4th Chemo

Yesterday we went to the VUmc again for my monthly check. I had to “donate” some blood to determine whether I could go on with the chemo medication as planned. Normally you have to take a number and be patient (something that is very hard for me) but in the VUmc they don’t. Depending on your next appointment you’re declared ‘CITO’ (to get priority) or not. If you’re lucky enough to get the ‘CITO’ status the results of your blood sample are ready within an hour. 

I, fortunately, always have the status ‘CITO’ (because I have an appointment with the neuro-oncologist in an hours time) but most patients are not so lucky. I feel always glared at by the other patients in the full waiting room when we arrive. But I can almost immediately walk through into the examination room for the actual blood check. We went back to the waiting room of the neuro-oncology department to wait the compulsory hour. Unfortunately an hour waiting is long if you’re impatient (like me).

Finally we were called by the Neuro-oncologist. This time he not much to tell us because there was no MRI scan made since my last visit (scan frequency in my case is once per three months). We told about the side effects of the chemo (nauseousness sleeplessness,  fatigue, headache, irregular heartbeat, etc.). He was especially interested in my irregular heartbeat and irregular blood-pressure. I had to go to our GP he ordered me.

I asked him about ‘the end’, what the symptoms are and whether it could be a lengthy battle with Death. He told us that we must discuss that with the Super Nurse. He prescribed the same dose of Temodal (the actual Chemo) as last time (420mg) and some other medication we ran out of. He wished us well with a handshake. Kind man!

Halfway my 3rd Chemotherapy

I was not that much ill or feeling sick during the first two chemo cycles but this 3rd cycle hit me hard. But let me start at the beginning. Last week Wednesday I visited the Neuro-Oncologist for a regular “chemo-visit”. Super-nurse was also there, a very pleasant surprise. The Neuro-Oncologist explained that everything looked ok to them and the chemo didn’t have to be adjusted. He gave us a receipt for the 3rd cycle.

The first two days I was not affected by side effects but from day three I was becoming more and more nauseous until the point that had to throw up. I was feeling so sick (I was still heaving long after my stomach was empty)! What was worse that I threw up only half an hour after I took my medication. Monling was so brave to inspect my vomit looking pills. And indeed she found a tablet of  Pantozol  (protection for my stomach) and vitamin pills. The Keppra pills were probably all dissolved by my gastric acid.

Fortunately I had taken the chemo (Temodal)  one hour before I threw up and so it was long gone from my stomach. We decided to not to let me take another 1250 mg Keppra because we were not sure how much my body had absorbed in the first place. That decision would increase the chance on seizures but what the heck. Later we called Super nurse and she confirmed that we handled the situation correctly.

I’ve got a beard

I’m home! I have been dismissed from the hospital since November the 29th. That morning I was washed by Teddy who also shaved me. She created kind of an imperial beard for me (please refer to the picture). She was willing to do so under one condition: I must regularly publish a picture of my “beard” on this Blog (still pathetic) beard is now a week old. Teddy, what do you think? ‘

 I put the promised (in my previous post) picture(s) of my “helmet” below I hope these pictures satisfy your curiosity! It was actually a surprise that they let me go. Just in the morning the doctor came to my bedside to inform me about the bacteria (a “dangerous beast” according to them) they had found during the surgery. From above the boneflap the wound looked clean but when they removed the boneflap and turned it upside down they discovered this bacteria: streptococcus. He told me I needed to stay in hospital for another 6 weeks (antibiotics).

Fortunately for me the bacteria was already gone (unknown destination) so I could go home. I’m feeling fine at moment. No headaches, what a difference with last week just after the surgery!!! (pls. refer to the pictures below). I’m just very, very tired while there is actually so much to do. This week Tuesday the remaining stitches will be removed and then the road is clear for Chemo Therapy.

Three weeks ago

Last Friday my good friend Marcus came to see me to fix our phone. We decided to have pizza for dinner so we took his car while I tried to spot the Italian restaurant “Marcello”, famous for it’s ‘pizze’ (plural for pizza). We couldn’t find it. What we found instead was a 100% halal pizzeria called Canaletto. You can guess the rest of the story: Marcello became Canaletto, change of ownership. The pizze of Marcello were superior to those served by Canaletto, but not much!

Yesterday we took a walk in the park across our street while I was wearing my helmet. I didn’t receive any reactions (maybe because it was dark). Also not about my beard. I guess that the people in Amsterdam are used to strange helmets and beards! However, when the traffic light (for pedestrians) turned green we started to cross the street. From the corner of my eye I did see a black Mercedes shooting towards us. We could just avoid colliding with it!!

Chemotherapy

I’m back after having been away for almost 3 weeks. My apologies! So much has happened over the last three weeks that we needed to recover from. I have therefore allowed myself a Blog-break. That is to say: until now.

Last time I wrote in this Blog that I had to visit the Neurosurgeon on the 20th of October. The Neurosurgeon was accompanied by the Super Nurse. During that visit we were informed that:
• The Neurosurgeon didn’t like the way we were keeping the wounds on my head clean (we thought we had done great but missed the point (we had received no training or demonstration);
• The Radiotherapy proved not to be successful (the 3rd grade tumor is now growing with the speed of a grade 4);
• The Neurosurgeon and the Neuro-oncologist decided against more radiotherapy (because I received the maximum dose already);
• The Neurosurgeon wanted to make the next step: Chemotherapy to immediately start after the wounds had healed (his perception: in two weeks)

We were shocked to hear so much (and such) bad news. We didn’t expect praise for my wife (because she was keeping my wounds clean) but most certainly also no bad mark for her ability to keep the wounds clean. The pictures below are taken before and after my wife cleaned my wound. Please note the “Grand Canyon” in which you can see my skull.

Before After

And the speed of all of this! I decided that it was to much to handle there and then, I accepted the brochure about the Chemotherapy from Super Nurse and we left. Over the next days we kept the wounds properly clean (where would I be without my wife) and went regularly to the hospital for wound inspections by the Neurosurgeon.

We took no decision about the Chemotherapy yet as we felt that more information was needed. Super Nurse suggested that a meeting with her would be a good idea to get an additional explanation. That appointment took place on the 30th of October. It was a pleasant meeting in which could ask any questions we wanted. We didn’t take a decision about Chemotherapy as we will still have an appointment with the Neuro-Oncologist pending. We have to bring all of the medication I’m taking or that is prescribed for me. I guess that is the right moment to decide about the Chemotherapy.

It’s going well at the RCA with me and I like to meet patients and therapists. Normally I have therapy three mornings per week and those wear me down already. So in the afternoons I normally sleep until dinner (which unfortunately prevents me from sleeping in the night). The staff is very friendly and creative. E.g. last Friday my physiotherapist asked me to work out using regular badminton rackets but with a balloon as an oversized shuttle to practice my right arm and leg. We had so much fun.

Typing still takes a lot of energy (typing, concentration) so don’t expect the next post next week. I will get back to when I have news.