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.

Unbelievable!

After 16 hours’ of being sober (starting at 0:00 till 16:00 on 14 November), I finally didn’t get the surgery as planned. I was told that they considered my case not urgent as other (new) urgent cases had arrived at the First Help station. I complained about this but they thought my arguments were useless. No idea who they are and how they could even make such judgement! Monling suffered from long traffic jam before she could finally pick me up from the hospital. That night she cooked me a wonderful meal and did we spend a wonderful weekend together (despite having been abandoned by the hospital).

Today hospital called at about 16:00 informing a new plan for my surgery has been made. I have to be in the hospital at 09:00 tomorrow morning and I’ll get the surgery at 15:00 the same day. That’s such great news! Immediately Monling cancelled all the appointments for the rest of the week, they are:

• Tuesday (18/11) car maintenance with Toyota garage
• Wednesday through Friday (19 – 21/11) : many therapies with RCA
• Thursday (20/11) Marcus comes to help to install the new modem

Well, YOU WON’T BELIEVE IT! At 19:00 hospital called again to inform us that tomorrow’s surgery has been cancelled in favor of another patient whom they consider again more urgent. We’ve been abandoned twice and we can’t describe how disappointed we are. They have been unable to close the wound since July and as long as they don’t succeed in that I can’t have the planned Chemo.

Don’t get angry we told ourselves, anger helps nothing! Maybe that’s the most important lesson I learned during the past one year.

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.

A visit to the Oncology “Super Nurse”

This afternoon we met with the Oncology “Super” Nurse. She promised us last Tuesday when we made this appointment that she would try to have a chat with the Neuro-Surgeon to change my priority. The first thing she told us when we came in that she had done so and that she would contact us on Tuesday with the outcome. She believes that my priority indeed can be raised.

The second reason we wanted to visit her was to ask her about the surgery procedure and the recovery period. She told us about the long time the surgery will take (approximately 8 hours) and that my spouse and family will be informed at the end. The Craniotomy is expertly explained here.

I will be equipped with intravenous drips and drain tubes, the latter will be inserted to monitor the pressure of my my brain. A biopsy of the tumor tissue will be taken and send to a lab to find out what grade it is: grade 2 (no or limited chemotherapy), 3 (extensive chemotherapy) and 4 (extensive radiotherapy possibly in combination with chemotherapy). It will take a few days before the results are back. She told us not to be afraid of chemotherapy: the dreaded chemo drip seems to have been replaced by pills and they seem to be able to also suppress the nauseous effect of the chemo nowadays.

I will be taken to a recovery room (PACU) to recover from the anesthesia and then I’ll be off to a medium care unit. Here I’ll be constantly watched. I’ll be wearing a turban for the first days. If well, I will be allowed to drink and eat the next day and sit out of bed. The intravenous drips and drain tubes will be removed after about 48 hours and stitches (or staples) will be taken out between 2 and 10 days later.

For operations on the front of the head (my case), the muscle which opens the mouth is cut (and reconnected of course) and this can leave the jaw stiff and hard to open wide. This usually recovers within a few weeks. Recovery is aided by eating tough meat (yeah .. that helps :-). When everyone considers that I should be able to move on I will be discharged, but will be seen for further follow-up. I may be discharged to home or a revalidation centre.