Hard Times

This picture is from one year ago. The day Kenny went in for his fibula flap surgery. In some ways it feels like it was five years ago. So much has happened in the last year. Recovery, radiation, infections, more surgery, cancer came back, more surgery.

Kenny is still recovering from his big surgery in November. We both have good and bad days. Usually we take turns. There have been many Dr visits and follow ups. He can make noise but not speak well. When he gets through with radiation he will have intense speech therapy. He is unable to have anything to eat or drink by mouth. We are hoping and praying that is not a permanent situation. He will keep his tracheostomy through radiation. I know we will both be relieved when he can get the trach out.

One of the consequences of the most recent surgery was that he lost nerves on the right side of his face. His right eyebrow and eyelid droop and impede his vision. He will have a day surgery tomorrow, Monday the 20th to lift the eyebrow and weight the eyelid so he will be able to fully close that eye. They will also biopsy a bump that has shown up on his neck right next to his incision. It first appeared towards the end of December. I think it’s likely cancer. I will be happy to be wrong. If it is cancer, it won't change the treatment plan. Hopefully between radiation and immunotherapy we can keep it at bay. It is so frustrating to feel like it will always comes back.

The good news is that the testing on the tumor from the last surgery showed that his type of cancer should respond well to immunotherapy. As of last week the Medical Oncology office thinks they will get approval from insurance for immunotherapy this next week. We spent a couple hours at the radiation oncologist on Friday as they were recalibrating the radiation based on this new spot on his neck. It is cliche to say but all we can do is fight one day at a time. I have realized so much of this is about your mindset. One thing about going to so many drs offices is you see what everyone else is going through. No one has it easy. Like the kind 70 year old man we met who still has his tracheostomy 11 months in and also takes care of a wife with dementia. Or the sweet lady who saw me crying in the oncologists office and hugged me. Her husband had already had head and neck cancer with trach and feeding tube. They were back this time for prostate cancer. She had her own worries but she took time to make me feel better. I pulled myself together and Kenny and I got in the car. As we drove home Spotify put on one of my favorite songs by Gillian Welch. Here’s the first verse:

There was a camp town man, used to plow and sing

And he loved that mule and the mule loved him

When the day got long as it does about now

I'd hear him singing to his mule cow

Calling, "Come on my sweet old girl, and I'll bet the whole damn world

That we're gonna make it yet to the end of the row"

… Singing "Hard times ain't gonna rule my mind

Hard times ain't gonna rule my mind, Bessie

Hard times ain't gonna rule my mind no more"

Please pray he has an uneventful surgery tomorrow and that he will avoid the potential side effects from radiation round two.