Purpose of this blog

My name is Cor and this is my story dealing with mucosal melanoma (MM) in my nose which was diagnosed on 10 Jan 2017. I am married and have 2 kids. I write and update this blog to reach out to all my loved ones far away with updates and my state of mind and also to share information with other patients.

Friday, June 12, 2020

Putting things in perspective

We visited dr Zenda (my radiologist) at the Kashiwa National Cancer Center, specialized in Proton beaming treatments. During the last visit in Sept’19, he was so happy to see us as he had been very worried about me. 

Now he told us that I am only the third patient still alive of all patients with metastasis. An old timer of 80 yrs, lives 7yrs, and another patient lives 5yrs. I am no 3 with 3yrs survival! 

He continued to explain that I was/am the first and only patient where the decision was made to stop immunotherapy treatment. At first they had doubted due to the many metastasis, but they are now studying why my miracle happened and how to repeat it.....

Dr Zenda hoped that I would set a record like getting older than 80. I smiled confidently and told him that I no longer felt being a patient. His jaw dropped hearing about my Mt Takao hike the week before. He laughed when my wife said that I would become 100! 

So we had a great time. Friday’s is not for outpatients but he had accepted our appointment today by exception, to meet us as friends, and so would he do at our next appointment in 2021! What a great feeling that the medical team is counting my years of survival. For them I am such a special breakthrough case study.

Yesterday I was happy with a clean scan, today I am happy to be a miracle, tomorrow is a gift, like every day to come!

Thursday, June 11, 2020

55th visit

Today is the 55th visit to hospital In Japan for checkup and treatments. The blood sample was taken and then I realized how time flies (when you have fun....) My experience is that when the mind has found peace and there is hope (perhaps because of) that there is no time to worry. All that is left to do is to enjoy all small things that happen everyday.

I believe that hope is the start of healing and recovery. The will to survive provides the energy to the body to kill cell after cell. Thinking about that makes you marvel at the wonderful mechanisms at work in the human body called immunity. It’s worth realizing and reminding that the power of self healing requires a lifestyle that supports it.

The speed at which society resumes rushing, worrying, selfishness, and other habits I have come to avoid is really beyond my comprehension. To start  a sustainable lifestyle requires apparently more than life threatening disease of oneself, family and friends. One thing is clear, it will never happen by free choice.