Since my last post about entering hospice, there have been some powerful, meaningful moments. I’ll share those below, but first wanted to comment on hospice. I have watched a lot of friends die. And in seeing this happen, I’ve seen so many that wait until they are suffering before being referred to hospice. I watched many in and out of week-long hospitalizations. So, entering hospice, I was leery. From watching so many friends who entered hospice suffering, then died, often within a week. I can tell you my experience with hospice has been wonderful. They are the “go-between” and make sure all my prescriptions are filled. If a new ailment becomes an issue, they are the problem solvers who figure out the solution. My view of hospice has changed…they are in place to make sure I don’t suffer. They help with anticipating what I might need down the road (like oxygen). They make sure I always have enough supplies to drain my lungs. They are wonderfully compassionate and I’m so thankful for their service.
Back to moments…last night I was texting back and forth with another Stage IV friend and I was reflecting on all the moments I’ve had in the past two weeks. Moments of:
EXCITEMENT: Finding out my Fab-U-Wish was granted, to have my book promoted! For two minutes on E! News, the story wasn’t about what the latest celebrity was wearing, it was about my book, What You Might Not Know.
QUIET: I’ve realized the need for ample amounts of sleep. Something as seemingly meaningless like a trip to the store requires a 2-3 hour nap afterwards. Side note: if you haven’t read The Spoon Theory, I highly recommend it. It’s only a couple of pages, but brilliantly describes what it’s like for someone living with a chronic illness.
FRUSTRATION: I feel my independence slipping away as I require more and more sleep. I’m usually an on-the-go person and living in denial has only made me more tired. So I’ve cleared any visits so I can truly let my body get the rest it deserves.
CURIOUSITY: As I mentioned, hospice anticipated my need for oxygen and had several tanks and in-home units delivered last week. They’ve been stored in my walk-in closet. Earlier this week, Corbin was looking for me and walked in there. “Whoa! What’s this?!” I heard. I went into the closet with Corbin and asked, “What do you think it is?”
Me: What kind of air?
Corbin: Air, like in the sky
Me: Kinda, it’s oxygen
Corbin: How’s it work?! I bet you just unscrew this cap and it lets it all out.
Me: Actually see this rubber tubing? See these two small nubs? Where do you think those go?
He thought for a few seconds, then pointed to my stomach, where he knows my drains are.
Me: excellent idea, but they actually go in your nose!
Corbin: Nuh uh, Mom! You’re trying to trick me!
Me: Nope, I promise I’m not. One day we’ll get it out and I’ll even let you try it first.
And today, we did just that. Even after draining over a liter of fluid from my lungs, I was still short of breath and the oxygen in my blood was a bit low. So we got it out, Corbin got to press the button to turn it on, and then felt the cool air flow out the nasal cannula. He was satisfied and went on his way while I stayed in bed reading while having oxygen. One of the other reasons I’m so tired is that my lungs aren’t able to breathe in as much oxygen, because of the fluid. So then, my heart has to work harder to get the smaller amount of oxygen circulated throughout my body. My resting heart rate used to be in the 70′s. Now it’s often in the 120′s. So, I’m worn out.
HEARTACHE: Of course there are the obvious ones: not seeing him grow up, missing holidays with him, not being at the last day of school, his graduation, or marriage. But, last night the heartache was seeing a hand-me-down winter jacket from a friend. It still has the tags on it and I realized with it hanging in his closet, that I won’t be here to see him wear that winter jacket.
And it isn’t all just about Corbin, although so much of it is. But, I’ll miss seeing my nephew’s first haircut. I’ll miss seeing my sister and brother-in-law becoming parents. I’ll miss seeing Corbin become a father and meeting my grandchildren. I’ll miss getting to see my parents’ retire. I’ll miss seeing my best friend’s wedding.
And there is the bittersweet heartache of Corbin starting a new school. While I’m thrilled to get to see him start 1st grade, my heartache is because he is at a new school, in his father’s district. This will be one less transition for Corbin when I pass. And, after such a stellar kindergarten year (teacher and school!), my heartache is for him starting a new school because it is a stark reminder of the severity of my situation.
GRATITUDE: for my family (especially my mom who is staying with us) who seamlessly weave in and out of my house helping take care of Corbin and me. And gratitude to all of you who have respected my wishes for privacy.