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.

Tuesday, September 05, 2017

The day after the second Opdivo infusion

Yesterday was a very predictable day. Enough time for power naps during the long train ride, long waits and a long infusion. I had a comforting talk with my oncologist in a mix of english and Japanese as I had come alone. ALP levels are very high, but red blood cell levels are coming up again. I explained him about the increase in pain in the ribs and about the rashes on back, stomach, chest and arms.

According to cancer.org, pain in the affected bones is the worst at night when you don't move, and less when moving around. For me it is the opposite, so I am not so worried. And for the skin, there is no itch as long as I don't accidentally scratch it so I asked for a prescription for some cream. The itchy eyes are probably caused by the rash on the eye lids so he prescribed eyedrops to keep the eyes moist.

This morning I woke at 5am with pain in the ribs, and eyes refusing to focus. The head was very heavy and the neck stiff. Nothing really serious but its easy to link everything to cancer or side effects of Opdivo. I wrote my bro's and sissies that I refused to follow that mental path, and decided that various normal root causes could also be the origin of pain, like lack of exercise, normal infections and dry air. So the Japanese bath is the treatment of choice, soothing the stiff muscles and red skin. I apply vaseline on a super itchy sore on my back.

And so the 2 weeks after my second treatment commences with positive mindset. When I have the energy, I read metastasis stories on the FB site of Mucosal Melanoma Warriors which helps me prevent sticking my head in the sand and face the reality of this disease. Giving support to others makes me feel good and sharing my experience surely helps others based on the feedback. The story of the 2 terminally ill men in the hospital comes to mind. Wishing everyone a great day!

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