Did you know that once your doctor writes the orders for hospice, you will no longer be receiving cancer treatments? I didn’t. I guess I’d never thought about it.
I’m not a very confident person. I pretend to be in so many areas of my life. When I make a decision, big or small, I put a ton of thought, second guesses, and self-doubt into whatever that decision is. However, once I’ve made that decision, I have made it, and I’ve thought of any possible repercussions. One of the hardest things for me is when someone else asks, “are you sure” in whatever way they do. For example:
Brad had made the awful and heartbreaking decision to proceed with hospice care. It was very hard. For both of us. So, Brad informed his care team that he was ready. The response that came back? “Are you sure?”
Hell no, I’m not sure! What do you think? Why would you ask that question? No. I’m not sure. I’ll never be sure.
Big decisions made over the last couple of days. My heart is not sure how to feel.
Brad went to the cancer center today to have his second round of this chemo. Labs are always first, then the visit with oncology to determine the plan for the day.
Today, Brad and his doctor decided to stop chemo treatments. The harsh reality is that there is really only a 20% chance that whatever chemo is given that it will make a difference. Brad hasn’t been tolerating any of this well at all. Vomiting for over a week, losing twenty pounds in the same amount of time….. so much pain.
So, for now, we work on pain management and accept the changes.
What does it feel like to have radiation on your eye? Brad says it doesn’t hurt to have the radiation but laying in position while he has it is pretty painful.
About a week ago, Brad began treatments to his eye muscle to attempt to alleviate the pain he is having in his head. The cancer is taking up space everywhere, but behind the eye was proving to be the most so far. That’s really how the masses were found. He was having horrific headaches every day that morphine couldn’t touch. There was double vision, sight changes, and really, now, Brad can’t see much out of his left eye at all.
This part is incredibly difficult for everyone. Brad’s parents are staying with us so they can be with Brad and help to get him to his appointments. With me working, I don’t know how I would manage the kids separate hockey clubs, school for them and caring for the house.
I think people often plan for death with things like life insurance, but no one thinks of the in-between time.
Brad went on FMLA through his employer as soon as he was diagnosed. Unfortunately, some companies then chose to let the employee go, terminating any working relationship that had been present.
So, what does that mean? If we had health benefits, we would have lost them in the middle of Brad’s first round of chemo. Thankfully, I carry them through my employer. It also means that you lose all of your employer paid benefits. Like, LIFE INSURANCE!!!!
It’s really fucked up to think about. But if you hear me say anything ever, make a serious plan for shit like this. You might think that lightening won’t strike you, but, so did I. And here I am, 3 years out of my own diagnosis with a life expectancy of about 5 years. There’s that. Then there’s the fact that lightening has struck me twice.
For now, while Brad is finishing radiation on his eye, his oncologist has paused chemotherapy. This is a new type of chemo that makes Brad incredibly ill. He couldn’t eat for a week and a half after his last round. I’m hopeful that resuming this will also help alleviate some of his symptoms, but wondering if he can tolerate this type of poison.
We continue to be incredibly thankful for the people surrounding us. There are so many days that I feel helpless/hopeless. My community keeps me going.