On Monday we went to see my oncologist to discuss the findings of the MRI. He had made an appointment for us with a radiologist to discuss the path forward with radiation. Like a lamb ready to be slaughtered I followed my wife to go and listen to the dreaded side effects.
I listened and watched the screen. The friendly radiologist used his best English, and when it became difficult he switched to Japanese. The location and exact size of the tumors (the big one is 13mm) would require 5-7 treatments, and we should start as early as possible. The big one was next to the brain stem, and if it grew further it would start to affect my motion. (Throat, tongue etc.)
We agreed to start on 25 Jan, even though is would coincide with my daughter’s High-school entry exams. When we asked if we could start a week later, he became evasive and looked at the dates of the scans. The tumors had grown from nothing to this size in only a few months.
We went for fitting of the mask to position and keep my head still during treatments. I had done this also for Proton beaming, so I breathed consciously and opened my mouth as it was all covered with thermally hardening warm plastic. The claustrophobic moment passed, and a CT-scan was taken to mark both head and the mask to achieve 100% precision with the ‘knife’.
The nurse whispered sweet English words in my ear to relax me, which was so sweet. I thanked her when we left to meet up with my oncologist to decide when to restart with Opdivo. He had confirmed the year before that restarting had proven to be effective, so I wasn’t too concerned.
To keep the story short, I restarted with monthly Opdivo infusions on 22 Jan. What we learned from my first clean-up surgery and Proton beaming treatment, is that melanoma is very aggressive and spreads immediately through the blood stream when being treated. Preventive Opdivo will prepare the immune systems for that and kill the melanoma cells before they can do harm elsewhere in the body.
The infusion always leaves me groggy due to the preceding 50ml anti-allergy infusion. After the bus and train ride home, I went to sleep early as my body showed signs of fever and other side effects like racing heart beat and lack of appetite.
A rough night followed with short waves of sleep and I hit my head looking for something in the kitchen. The unforgiving kitchen cabinet door left a bleeding mark on my head. Why now I thought.... I imagined vividly that the cyber knife will be positioned exactly over that red marked spot.
Now that I am writing this, I had a nice coffee and will go for a walk soon. As always a new day has come, new treatments and new energy is flowing through my body! Thank you all for the great support and love. It really helps me through these difficult times...
