Happy Father’s Day – You have CNS

On Father’s Day, June 19, 2016 my husband was very confused, his legs were dragging when he walked and his words were scrambled. My daughter thought he was having a stroke so we rushed him to the Emergency hospital. Let me add we were on vacation and this was day one of our vacation. The doctor came back within one hour and explained that he had not had a stroke but a brain tumor.

The Neuro surgeon came in 20 minutes later and scheduled a cranial biopsy the next day. That’s when we learned Kevin had CNS. The doctors said this was a treatable and if one has to be diagnosed with brain cancer, this was the one with the best survivor rate.

Soon we were headed to Stanford and the chemo treatments began. After 7 months and 12 chemo treatments his MRI showed remission. Very excited we were anxious to get on with how our life was prior to the diagnosis. We now would have our after care with UC San Francisco with a doctor there who is working and studying patients with CNS. But wait, that is not how the story ends.

Not one doctor explained a possible side effect or a condition called Late Effect Chemo or Neuro Toxicity. This is where our story begins. After chemo in January, everything seemed to be fine. But around April, I began to notice Kevin sleeping at least 14 hours a day, forgetting simple things and tasks, and his walking steps started to slow down again. I contacted the doctor at UCSF and we did another MRI. It was clear and his blood work came back really good but he was changing. Almost like someone with dementia and/or Parkinson’s. I can’t explain it but I took video and sent it to the doctor and his response is “This can be either a Short term, Long Term or Permanent side effect of the cancer and chemo treatment”.

I have not yet followed a blog that shares stories of Survivors and how caregivers assisted their loved ones with the Delay Effects. I am hoping someone out there has some stories they would like to share with me.

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