Limboland

I have struggled to write an update these past few weeks, partly because information seems to change daily and partly because I want to share more hopeful news. Kenny has received three immunotherapy treatments so far. The medical oncologist has told us we will not know if it is helping until after at least four treatments.

What I can tell you is that the dermal metastasis in his neck is progressing. I can see that clearly every day. We saw the speech therapist who works with our surgeon a few weeks ago. She was very concerned about how bad his neck was looking. His trach was not sitting as well in his throat. She changed his trach out to a longer one with a more flexible tube to protect his airway. There is nothing she can work with him on as far as speech because the swelling and disease progression in his neck make it impossible. She also had a private conversation with me and painted a pretty grim picture. While that was hard to hear, I appreciate her honesty with me. I told her we intended to fight this with everything we have for as long as we can. The rest of the surgeon's team doesn't really give me straight answers. When you have moved past their area of expertise in cutting cancer out, they are not able to do much for you except tell you to ask the oncologist. They have no answers. I send pictures of the tumors in his neck, of the tumor wound on his cheek, asking what I should do or if there is anything we can do, and I get responses like "Just keep the wounds clean." Gee thanks. I'll do that. With all my medical expertise over here. Just making it up as I go along.

That same week, we saw our medical oncologist. She saw the progression in his neck and was very concerned as well. Her suggestion for us is to add two chemotherapy drugs to try and control this rapid progression and give immunotherapy more time to work. There are many things people say they won't do when dealing with a hypothetical. It is another thing entirely to be faced with a real-time decision. Within reason and means, we have done almost every traditional and alternative treatment I can think of. Chemo is the only traditional treatment we have yet to try. This combination of chemo drugs (Taxotere and Carboplatin) is given on the same day he receives immunotherapy (Keytruda). This is a pretty common combination for his type of cancer and for things like metastatic breast cancer. Knowing that his fourth Immunotherapy was scheduled for next Monday, the nurses and I spent the last two weeks trying to get approval from the insurance for chemo. Yes, I realize how ridiculous it sounds that a patient who has had a three-time recurrence of cancer and confirmed metastasis has to go through three levels of approval at insurance to get chemotherapy. I am told this is the way all insurance companies are now. On Tuesday, still with no answer, I asked the nurse to get the cash price for chemo. I knew we had to move forward regardless. It was $800. No, I didn't forget to add a zero or two. The insurance company will put you through hell, whether it's $800 or $80,000. That same day, I was called by the facility that places the ports for chemo. They only had one day available to perform the procedure, and it was the next day, on Wednesday. I told them we would be there. The port will make it so much easier on him during treatments and blood draws. On the way to the procedure, driving through the pouring rain, I was notified that the insurance approved chemo. That is also the same day we found out that his thyroid is barely functioning. It could be from the radiation or possibly the immunotherapy. Either way it explains why he has been so exhausted, even more than the average cancer got you down kind of tired. We repeated blood tests for that and are waiting for those results.

He has been going to physical therapy twice a week to try and help with the severe edema in his face. He did receive the pneumatic pump machine that he can use at home. He's not a fan. It is a full vest and headpiece hooked up to the pump machine that you put on and wear for a thirty-minute cycle. It moves the lymphatic fluid down from the head into your chest, where your body can deal with it. I am hoping he will get more comfortable with it in time.

I thank you all for the prayers and for asking how you can help. I promise all of you who have asked, I will think of ways that you can help. It is hard in the midst of things to know what we need the most. I wish there was something we could do for our kids. Our boys, especially, are struggling. They can't talk to their Dad like they used to, and it is hard for him to communicate what he needs from them. Please pray for Kenny's strength and spirit. I know he has been down over the last couple of weeks. He will respond to texts, so don't think you are bothering him. Just text him anytime. I am amazed at how well he has held up through every new challenge. I know how weary I am, and I'm not the one suffering the disease. When I told the hospital counselor that I didn't think I was doing very well because I just start crying randomly all the time. She informed me that it was a healthy response to the crisis we are in. So I told her that meant I was very, very healthy. So FYI if you run into me in the middle of Costco crying for no reason (why is it always Costco?), that is my healthy process.

Immunotherapy and Chemo are scheduled for this coming Monday. I will update as I am able. 🙏