Hospice update

Hello, friends and family. I’ve been at home in hospice for 2 weeks. Hospice means I’m no longer actively treating the disease and am focused on symptom management and comfort care. Nurses come to my house to help with my care, which right now is about twice a week. And a hospice doctor prescribes my meds and makes sure I have what I need 24/7.

I’m doing better than I had expected I would be at this point. I’m in pain but managing it with morphine and don’t have too many negative side effects. I’m dealing with a permanent ileostomy bag (I poop out of my stomach into a bag). It’s a pain, and it leaked when I first got home, but it gives a break to my bowels. Some of the greatest news is I’ve been able to eat and drink—way better than when I first got home. I only weigh 109 lbs (have lost 50 since May), but I’m getting calories and nutrients in, so I’ll take it. 

My mobility is very limited. I spend most time in my recliner in the living room and haven’t really been able to take a walk down the street without feeling pain or getting lightheaded. But I can move around inside the house. It’s really challenging to not physically interact with my kids, but we read stories, do art projects, watch shows, play music, tell stories, and make hot chocolate. Nora can cuddle my legs in the recliner while I play with her hair. We also do activity books together. And Fiona and I are collaborating on writing a comic book: she came up with the story and does all the illustrations and writing. I’m basically the assistant to help with spelling. 

The other day Queen Rosina of the Lightness had a dance off with Queen Fang of the Darkness. Rosina danced to the Sugar Plum Fairy and Fang to Danse Macabre. It was pretty epic.

It’s wonderful to be at home but also a weird existence. I can’t really go anywhere, and Liam and I have trouble planning our days since things always come up. But we are doing our best to enjoy this time together, even though everything feels so uncertain.

I will say that I feel stable; my symptoms aren’t getting worse and I’m not actively dying. My body may be appreciating a break from the constant treatments of the past two years. And we don’t have any scans planned to track what’s happening with the cancer, so we just continue day by day. I tend to feel better in the morning and early afternoon, and then by the evening the pain surges, and I feel pretty bad. I also get occasional new pains that are worrisome, and I always feel like things could turn on a dime. 

But overall, we are hanging in there. We appreciate all the love and well wishes. My cup is most certainly full. We’ll update the “ways you can help” page if there is anything new that comes up in terms of the kind of support we need. We are so grateful for our community near and far. 

All our love,

Molly

P.S. Shout out to our friend Anne for the amazing mug!