Hola amigos! Here I am speaking Spanish from the hospital bed because my friend Fabiola is here helping me type this. I feel I need to give you all an update about what is going on but I needed time to gather my thoughts.
A lot has been going on. On Monday, we came in for me to get blood work, my regularly scheduled oncology appointment, and the plan was to start up on my new treatment. Well, blood work came back looking bad. My bilirubin was super-high again, as were other liver levels. My white blood cell count was high, and platelets were low. Based on these counts, my doctor sent me for a CT scan instead of treatment, so I went. It showed growth in my liver and lungs yet again. So, I was placed in the hospital. Well, here I had an infection in my blood, and possibly my liver. I went on some pretty strong antibiotics, and they did a procedure to remove some of the fluid from my belly – they also went in to fix/replace the liver stent they had put in before. After that, they said there was nothing else they could do. Stivarga and Opdivo (the treatment I was supposed to start) was off the table because of my liver levels being so high. That was a hard pill to swallow. And because I was so out of it from being loopy from the infection and antibiotics, I didn’t even understand that at first.
Long story short – we have decided to go home on hospice. This sounds so final, I know it. It breaks my heart to eve have these conversations – but we have to do it. Whether we decide to do hospice or continue “outpatient care”, I wouldn’t be able to be treated because my liver levels are so high. I would likely have tons of side effects, feel crappier, etc. And I know there are people out there who are going to recommend alternative treatments, supplements, you name it. Believe me, I have read everything and I have tried it all. Hospice ISN’T the end-all. If my liver levels improve, I start feeling better, etc., then I can always revoke hospice and try another treatment. For now, that just isn’t in the cards. I am going to reach out to Dr. Kasi (guy in Florida/Iowa), and possibly to another doctor that I have seen here in Mechanicsburg to get some second opinions. I already know that trials will not take me because my blood numbers are so wonky.
Believe me, friends, I have tried everything. I want to spend some quality time with my family and friends, and I want to do it with as little pain as possible. Hospice seems like the best and easiest way to do that, so that’s what I choose. Is it hard? Yes. Is it permanent? Not necessarily. But please don’t judge me. I just need your support right now. I have a relationship with God, and I know he is always with me. I need you to be with me, too.
I love you, dear family and friends, and that will never change. This is all very hard for me. Please help to make it easier.