You Play to Win the Game

Kenny’s surgery went well on Monday. He certainly looks like a prize fighter. The Dr. fixed his eye and also put a new skin graft on his arm. The Dr. was sure the spot on his neck was cancer. He was concerned it was dermal metastasis but we had to wait for pathology. I brought him home Monday afternoon. His surgeon called me again that afternoon to urge me to fight with insurance as hard as I could. They denied immunotherapy a month ago. Then the oncologist submitted the genetic test result from Kenny’s tumor that showed the immunotherapy would work on 90% of the cancer cells. They submitted to the insurance last week and were denied again. I talked to our case worker and she said they wanted proof of recurrence. I told her the surgery in November was recurrence! The pathology from Monday would be a three peat! Didn’t matter. They have guidelines she said. 

On Tuesday we went to the thyroid/diabetes Dr. He was originally going to biopsy Kenny’s neck before we realized the surgeon would do it on Monday. We kept the appointment anyway because I was concerned about some nodules on his thyroid from an earlier ct scan. They turned out to be nothing to worry about. But I’m glad we went. They did a sonogram on his neck and while the thyroid was not concerning, the lymph nodes in the LEFT side of his neck were. They told us to come back Wednesday afternoon and the doctor would do an in office needle biopsy. So we did that Wenesday afternoon. All three doctors had a conference, the surgeon, radiation oncologist, and thyroid doctor. It has been determined that Kenny cannot have any more radiation on the left side. Even though he has never had disease on the left side, it was radiated before as preventative, and the oncologist said he cannot do it again. He is getting all the radiation on the right side where the new muscle and skin flap are. He started radiation on Wednesday. He seems to be tolerating it well so far but it does make him tired. The pathology came back from the biopsy on Monday, it was cancer but the tumor was the type of original disease not metastasis. Small mercies.

So the plan moving forward is to keep on with radiation on the right side of face. We will go to the thyroid doctor now every two weeks to sonogram those lymph nodes since he can’t have radiation there and if they do grow out of control, the surgeon will have to take them out as well. 

He needs immunotherapy. I have been on the phone constantly with insurance and nurses and drs for the last few days. The caseworker got the pathology report from Monday and said she submitted it for review. So we waited on Wednesday calling but heard nothing. Then I talked to the caseworker yesterday morning and the woman changed the story. Now she wanted to wait for pathology on lymph nodes. She only found out about the new biopsies because I TOLD HER. I was irate! I told her they can’t keep changing the rules. She had the pathology report from Monday. That’s what she had been making us wait on before to prove cancer recurrence. I also had the head of HR calling the insurance provider trying to get to the bottom of this. The oncology nurse and I had talked multiple times yesterday comparing stories the caseworker told us. Always something different. Always moving the goal posts. The caseworker kept saying we could do a peer to peer review where Kenny’s oncologist speaks to the insurance oncologist. So we set that up yesterday afternoon. The insurance Dr told our oncologist he didn’t see why it would be denied but then said….wait for it….HE WASN’T THE DECISION MAKER. What in the world?!?!??  Why set up a pointless meeting? Just to string us along? To drown us in bureaucracy? Is this why people just give up and die??? What about others who don’t have Drs. willing to fight like hell for their patients? Thirty minutes later at 4:30 on Thursday, I got the call from the case worker. She said she had verbal approval for immunotherapy. She said she would try to get written approval to the oncologist but it might not be until Friday. I told her their office is closed on Friday. She needed to have it to them by the end of the day. Then I got the call from the oncology nurse fifteen minutes later. She had written approval in hand. He can start immunotherapy next week. 

When our kids were little Kenny would teach them to answer him when he questioned “What are the three phases of the game?” 

A small voice would answer “Offense, Defense, Special Teams” 

We are both tired of playing defense. Yesterday was about offense. Yesterday I decided to go ham.  It felt good to win. It was a small battle in a big war. But it was a win. 

PS: Tim, you were right. I dug deep and found my inner Karen.