I wasn’t feeling well yesterday afternoon. I developed a fever and my documentation said to call the oncology department as soon as I developed a fever > 38.5C. My thermometer said 38, 38.2, 38.3 and around 18.30 it said 38.6C. So I called the oncology ward. I had to come to the emergency room, where they took blood, urine and did a thorax X-ray. By that time, my temperature had dropped to 37.1C. Since my immune system is compromised, they are extra careful. After the exams and after the blood test showed no infection, they sent me home. I developed a clogged nose and snottiness, so some cold virus has likely infiltrated my nose. The nurse told me today that the hematologist sees no reason not to start the chemo tomorrow, so back to the hospital tonight (before 20h), for the last part of course two.

Today we went to ‘t Kwekkeltje, a playground for the kids, half an hour away by bike. It was nice to see them enjoy themselves, but an hour biking back and forth, and being in the playground was extremely tiring for me. As I said before, it is impossible to discern ‘regular’ MS symptoms from side effects from the chemo, or symptoms caused by cancer. Tiredness and brain fog (chemo brain), are well known, and common, side-effects of chemotherapy, and balance and speech problems correspond well to the location of the cancerous lesions in my cerebellum. But at the same time, these symptoms are not new to me. I had them a year ago, and also then they were much more pronounced when I was tired. I have to keep reminding myself that my ‘baseline’ is not being symptom-free. Many times per day, I am trying to feel whether the tumors are shrinking, wondering if the chemo is working. When I feel myself being extremely tired, when my balance is off, or when I feel ‘detached’ and have difficulty to concentrate, I doubt whether the treatment is working. The thing is, I don’t think I feel any worse than a year ago, before this whole cancer story started.

On the 14th of July, I have an MRI scan planned at the VUmc. The results from this scan will indicate if the first part of the treatment was effective. It is probably the only way of quantifying this; it will likely be a stressful time to wait for those results.

On the 18th of May, I already posted about the kids’ book Chemo-Kasper. It is a book by Helle Modzfeldt about Chemo-Kasper, a chemo-agent. He eats cancer cells, but his eyes are bad, that is why he needs glasses. Sometimes, when he is attacking bad cells, he loses his glasses. Afterward, he can’t see very well and he starts eating healthy cells by accident. This can cause all kinds of problems in the body. When he eats hair cells you can lose your hair, or when he eats cells in your stomach, you can feel sick. Some of the bad cancer cells also tend to hide, so that Chemo-Kasper can’t find them. Because they multiply fast, these unfound cancer cells will cause problems in the future again. Thomas loves this book. It explains cancer and chemo very well. There is a Dutch Adobe Flash version online, and a German PDF. We ordered the book, and Thomas is showing and explaining it to everybody. Yesterday we drew the main characters, the cancer cell, Thomas the patient and Chemo-Kasper. I laminated them so the kids could play with them in their bath.

I had my original profile cartoon designed by a fiverr user called Ice-tea. Fiverr is an amazing website, where you can hire somebody to do a small task, in this instance to create a profile cartoon based on a picture. Unfortunately, my profile picture became outdated; I am bald and I can no longer wear contact lenses (the chemo has destroyed the cells protecting the eyeball). So I asked Ice-tea if he could update my profile picture, which he did for me.

The first part of course two is done. Today “Carmustine” was the chemo they administered. It says on Wikipedia that “Carmustine is a dialkylating agent, as such, it forms interstrand crosslinks in DNA, which prevents DNA replication and DNA transcription.”. So basically it also inhibits cell replication.
I went home around 19h. I have to be back in the hospital for part two on Tuesday the 27th of June.

The second chemo is in, Teniposide (brand name Vumon), was administered both yesterday and today. I looked up what the mechanism of the drug was. Teniposide acts as an inhibitor of topoisomerase II (an enzyme that aids in DNA unwinding), this causes breaks in DNA, which in turn inhibits cell division, causing cell death. Tomorrow is the last chemo of this part of course two (carmustine). If nothing out of the ordinary happens, I can go home after dinner.

The first chemo of this course is in. It hasn’t changed how I feel; it only colors my pee bright yellow. Think of the radioactive rod’s color in the opening sequence of The Simpsons; it’s like that color, except I don’t think it glows in the dark (I can’t try it because the light in the bathroom turns on automatically).

Overall I must say that I feel much better than anticipated. The first course wasn’t as bad as I expected at all. I haven’t felt sick, or nauseous. I am more tired, but MS familiarized me with that already, I find it manageable by not doing too much in a day. I have a dry mouth, my eyes are watery sometimes, and I lost my hair, but to me, these are all minor, well manageable, side effects. I do have a cold now, and that aggravates my MS symptoms, luckily it seems to be getting better (let’s hope it is resolved before the chemo impacts my immune system again).

Yesterday I felt apprehensive about starting course two. I didn’t feel sick, and being at home was nice. Sometimes I have to try hard to keep the end-goal in mind. Now that course two has started, I have accustomed myself again to the hospital.

Thanks again for your cards, emails, messages, flowers, and visits. They mean a lot to me and are definitely not a bother. I feel fine, so don’t hesitate to drop me a note, or plan a visit!

I was recommended to read the book “Leren lijden” by Martin Appelo. In his book, he explains different forms of suffering, and he talks about how to identify and deal with them. In the book, there was a prayer to illustrate the difference between fighting and surrendering, I found this very applicable.

Give me the strength and courage to change the things I can.
Grant me the serenity to accept the things I cannot change.
And the wisdom to know the difference.

Yesterday I returned to the hospital for the start of course two. I slept quite badly, having a cold didn’t help me to sleep well, and the IV pump was beeping around 3 am and 4 am. It’s nice to be back…

This morning we went to the gym of Nils. We biked there, which was nice. The cargo bike is proving to be a great buy. I have a cold, which sucks. It aggravates my MS symptoms.