Marisa says: It seems I am always writing a post in my head, especially these days, when I haven’t posted an update in so long. But, as you know, I haven’t. So, I am trying to take advantage of a few minutes sitting in one place to let you know where things are.
In the “when life gives you lemons, learn to make a margarita” category, we decided to take the boys out of school for a week to go on a cruise right after Easter. Generic Caribbean, I called it – lots of sunshine, no dishes to wash. Given the transition to hospice, the uncertainty ahead as well as the need to spend some quality time as a family, we thought it was a good idea. Actually, there was much discussion about how we would manage it, what to do if a health care crisis arose, and a consideration of most scenarios, but with the endorsement of the hospice folks, we decided to go for it. Got the go ahead on a Thursday and found a ship that sailed the next Tuesday. How’s that for lead time!
The cruise was great! We didn’t even get off the boat. Scott found a balance where he would spend one day doing something with us and then rest a day, and with a great kids program, the kids had a good time, whether or not they were with us. I honestly didn’t realize how much we needed the time together, but in retrospect, when you think about it, the boys have been busy with school and other activities, and although I am working from home quite a bit these days, during the day I am working, and not always focused on Scott. So, the trip gave us some solid family time to talk, laugh, spend time together and recenter our family. I’m glad we were able to do it (and thankful that the time away was medically uneventful).
Since returning, we’ve continued to work with the hospice team, especially our fantastic nurse. She comes by a couple times a week to check on Scott and manage the medical aspects of his care. She is a resource for me, as well, helping me sort through things and understand where we are and what is ahead.
Since the first paracentesis, Scott has had two more. Both times they drained three liters from his abdomen. It is refilling faster than it initially did, too. They have talked about putting in a catheter that would allow us to drain the fluid at home when needed and keep Scott more comfortable, but he just doesn’t want it. At this point, he would rather go in to the hospital to have it drained every week or two, than to have something sticking out of him. And while I may not agree and worry about the logistics as he loses his strength, it is his decision and I do respect it.
We also spent a week in residence at the hospice house to support a change in medication. Initially we were supposed to be there three or four days, which then turned into a week. Scott was also not thrilled with that, but dutifully soldiered through, and is now a lot more comfortable, having gone through the transition.
The other transition continues as well. I have no idea what the number on the scale is, and it really isn’t relevant, but I see the continued loss of weight and overall body mass. He sleeps most of the day now, trying to save what energy he has for an hour or so in the evening when the boys are home, although he did make it to see the Avengers last weekend to celebrate Cole’s birthday. His appetite comes and goes, mostly snacks and a few small meals, so as not to cross the line that turns the often present nausea into vomiting. He’s rediscovered a love for jello.
One of the hardest parts for Scott over the past couple weeks has been the loss of his ability to communicate, both through the gradual weakening of his voice and the loss of his ability to text, as that has been his primary means of communication. His fingers aren’t steady, even after adding a physical keyboard, his voice isn’t strong enough for dictation and his mind is not always clear. It is hard that his world is shrinking at a time when he so desperately wants to stay connected. We have adjusted the meds to ensure they are not the cause of the confusion. It just appears to be part of the process, as toxins begin to accumulate in his system, and unfortunately, where we are right now, Scott knows he isn’t always clear.
But, as always, there are bright spots, visits from friends that brighten his day or stolen moments with the boys. He frequently asks when he is going to feel better, when he is going to have more energy so he can be more active. It breaks my heart to hear that, and I tell him that we will just have to make the most of where we are now, and will continue to try to do so. There’s nothing that will make this all better. We just continue with the journey, thankful to still be on the road.
And while we’re on that road, please keep those BIG prayers coming!