it works

On 1 November I woke up, brought Marika to school and went to work like it was a year ago. Full of energy, not looking at the clock and the just completing the day's tasks. Great.

Next task is to continue my guitar lessons and study Japanese. Life is smiling at me again, sitting outside in the sun with 21degc.

It works! Mind over matter.

a plan has come to me

Today is the rest day after infusion. As per my experience, I have to be ready for any side effect. This time the fatigue isn't that bad, the fever isn't coming, the headaches are minor, the rashes stay away, the itching eyes are bearable and the stomach is as always noisy and painful. If ever I will be able to overcome the emotional shackles that come with this sickness, I will have to take a bold step mentally. A step to decide enough is enough.

I therefore decide now that I believe I will never be cured and that I stay chronically ill. I will take infusions the rest of my life and scans every 3 months to keep an eye on metastasis. As part of the bargain, I will resume a normal life now, return to work and I stay aware of fatigue attacks and other side effects of Opdivo.

This new lifestyle is wonderfully different from what I went through the last 9 months. It is the way to live life again as it can be, and should be lived: Enjoy every moment and be happy with what I have. Live life as if it can be lived only once! Thats my renewed goal in life.

Join me!

Silly fun after the 6th infusion

The scan brought news that there are still grey spots visible (affected by cancer) in the spine. It was not a PET scan, so it was not easy to see for me if those spots were still active. In a few days I will get the detailed report, which will provide a conclusive description. In the meantime I agreed to continue the Opdivo treatment as the blood tests show that the body reacts to the treatment and all measures have almost returned within normal limits.

Not much to be happy about, but also not so bad. I shared the news with my brothers and sisters on the way home. I felt numb, tired, unable to feel positive. I had hoped for clear improvement and without the details I couldn’t move on yet. I was left in limbo, unable to make sense of it.

I will have to find a way to get used to this type of result, and stop expecting a cure or conclusive answers. The good thing about the long train ride home is that the news (or lack thereof) had time to sink in. I took a hot bath and went for diner with my daughter, braving the cold wind after the typhoon.

We had so much fun while enjoying our favorite salad bar, being serious and silly. She asked me if ‘Wow’ is a word. I answered that it’s more like an expression like ‘hoepla hoekstra’. She laughed so loud and long she almost peed in her pants. Such silly fun with my lovely daughter is what makes life worth living.