Marisa says: With the last couple weeks behind us, I find that I am finally at a spot where I can post an update. Frankly, it’s been a bit hectic around here, but not in a bad way. And a new routine is slowly getting established.
Scott finished the round of radiation, in an attempt to make his back more comfortable. While the initial results were mixed, with some additional time behind us, it seems to have helped. Actually, the radiation fatigue ended up being a bigger issue, especially piled onto the cancer fatigue, but it seems that Scott is finally beyond that…at least the first one.
We are now working with a hospice team. What great people! While this may seem like bad news to some, hospice is actually a wonderful thing, as their goal is to help you live your life in the way that you want. I know this has been a hard thing for Scott to get his head around, as he is a fighter and wants to keep fighting. Working with the hospice team doesn’t preclude our ability to pursue a new treatment in the future, if one were to come up. Since Scott is not currently able to pursue oncological treatment, it provides us with good medical support, pain management and help for navigating the current waters. It means we are working to maximize the quality of time over quantity. And as I have told him, it means that we are still fighting, just in a different way.
Scott had his first paracentesis (auto-correct says “parade thesis”) recently. This is where his abdomen is tapped to drain fluid that has accumulated in there (ascites). They drained 1.5 liters, which made him more comfortable. We will monitor the level and may need to do this again, depending on whether meds can keep up with the ascites or not.
His weight is relatively stable, fluid notwithstanding, which is a good thing. Eating is a challenge, as his appetite is rather depressed. He tends to eat at least one small meal a day, and I keep a variety of snacks around for other times. Fortunately, friends and family have kept him well supplied in gluten free treats, especially not one but two gluten free 7-Up cakes. We have also had a steady stream of visitors, which is now winding down. Their presence has allowed me to get to the office from time to time, and ensure that Scott has company in case he needs anything. I am very thankful for those who have made and continue to make time for Scott, be it for walks in the park, hanging out watching tv or for dinner or conversation with friends. It would be very easy for people to pull away, but instead, our village has gripped us even tighter.
The boys continue to thrive, even in the midst of all of this. We continue to be honest with them about where things are, so they too can navigate the waters ahead.
So that’s where it is right now. I’ve got more to say, but will save the rest for another time. I want to get this update out.
Keep those prayers coming! They are always much appreciated.