A burst of blue light

The first shot of 10 minutes radiation was over before I noticed. After my head was pinned down by a mask. I had to control my breathing and urges to break free. A CT-scan had to be made again to position my head. The explanation was complex and I couldn’t follow it, so while I thought the scan was still whirring away, a blue light appeared a few times.

That was it. It left me feeling light headed and while leaning over to tie my shoelaces, I felt disoriented. Talking to the radiologist didn’t help much as he told me I would loose all my hair. Cheering me up would have helped a bit. Anyway, I had infusions on my mind and went on to find the office of my trusted dr Namikawa.

It was not his outpatient day, so he met me rather unexpectedly. I had expected his nurse to tell me the results of the blood test. The blood results were very good, even my anemia had disappeared with consistently taking ion supplements. Body was strong from walking, yoga and (small) weight lifting. Except from my facial palsy I felt like nothing was wrong with me.

The infusions would take 3 hours! It sounded a piece of cake, but after I had slept through the first 4 bottles, and still had 3 full ones to go I felt rather lost. The apps from my support team in Holland kept my spirits high, even though I couldn’t reply much with the IV holding my right arm down. I did have plenty of time to think about life in all it’s beauty, and how important strong, loving bonds are.

While waiting, and waiting, I felt nausea coming up and was not ready to go home. I tried to eat something and only the trusted apple juice helped keeping it down. After a short nap, I finished some more, and asked my daughter to pick me up from the station. With that motivating thought, I hopped on the bus and changed to the rapid train at Tokyo station.

Walking home in the rain, sharing an umbrella with my daughter, made me forget everything and soon I enjoyed the Japanese bath and a warm comfy bed. The side effects of Yervoy can be pretty bad, but for me the next day wasn’t too bad. Actually I woke up with the feeling nothing had happened the day before. That’s the thought I held onto, and it went pretty smooth.

Only 9 more bursts of blue light to go, and with a bit of luck the nausea won’t not be too bad…

A new chapter

My hope that the good progress made in the April scan would continue has been dashed. 

The follow up scan in July was all clear, and it felt like a new life had started. The decision to stop Opdivo was made and after 6 months of infusions I was free from regular hospital visits. What a relief that was in the heat of the summer.

The scan made in October showed that a bunch of tumors had reappeared in the fluid inside the ventricles of the brain. This fluid, also known as cerebrospinal fluid (CSF), flows through the ventricles, around the brain (meninges) down into the spine. 

As I explained in previous blog posts, the tumors in the ventricles were removed by pinpoint precision using the cyber-knife. This time this method is not an option due to the size and multitude of tumors. The only remaining treatment is full-brain radiation, combined with immunotherapy to prevent possible growth of spreading melanoma cells in the rest of the body.

Sounds like a good plan right? It does to me, were it not that this the last possible treatment. If the melanoma cells don’t react to this… This thought haunts me at night... Peace of mind comes soon after as I trust in God to guide me and make it work as he did so many times before. Let’s pray for that.

The treatment goes as follows: 

• Starting tomorrow noontime I will get a daily dose of radiation of 10 minutes, for 10 days. Friday 5th November is the last day.
• Tomorrow I will also get an cocktail infusion of Yervoy/Opdivo, lasting 2 hours. It is stronger than Opdivo alone, and is followed by a second infusion on November 15th. Ipilimumab and Nivolumab. Beautiful medicine names… patients call it Ipi-Nivo for short. 

Side effects are probably mild for me, including stomach upset, nausea, loss of hair, and tiredness. I plan to work in the morning to keep my mind occupied, and visit the hospital in the afternoon. Previously I stayed in a hotel nearby but that didn’t exactly cheer me up, so I will travel up and down this time (approx an hour from our house) 

The next scan is planned in January, so we’ll have to sit tight till then. Christmas will be a time to reflect on the gift of life. Wish me luck, and let’s pray together for easy side effects and good results!