At his request, two bottles of water on his desk, so that when he awakens in the middle of the night, mouth parched as the Mojave Desert where his mother lived until she came out to Texas, he may take a few sips and calm the cotton-mouth that is one sign of a liver run amok.
Two loads of laundry washed yesterday, folded, put away, because lifting a full laundry basket after we have merely dumped in load after load clean clothes and pulled out what we need, as we need it, is a nuisance at best and a back strained at worst. When we go to bed at night, the laundry basket (full or otherwise) rests in the seat of his office chair, with the chair facing snugly into the corner of the L so that he may use the back of the chair as a support if he needs to get out of bed.
The days when we would sit on our respective sides of the bed, folding our own things and stowing them, working in companionable silence or sharing stories of who we are and what we have known (this is still such a new marriage that we have only touched the surface in many respects), those days have slipped away.
He dozed, off and on, during the Packers game. It is a measure of how weary his body is, that sleep overcame his passion for the team, and while folding his Packers sweatshirt, I realized that I want to keep it when he goes. The cheesehead, too. I may never watch another football game after this season, but in caring for these perishable tokens of my husband’s zest for life, I see again the man that I married.
It is a different pain than I feel when I see the children’s father, because my husband may be battered, but he is not broken. He tells me that he is curious about death, hoping that his last days or weeks will not be spent lying in bed in the fetal position, as happened to one of his dearest friends, wondering if one night he will go to sleep and just not wake up. I am hoping for something closer to the latter, but also hoping that he will be conscious and pain-free to the end, and we can just kiss goodbye and let him go.
I found myself dragging, again, around 8:30 but hanging in there until the clothes were dealt with and the laundry basket stowed, temporarily, on my side of the bed. I was so tired that I fell asleep, bolt upright, while sitting on the commode, re-reading a chapter here and there from Rachel Naomi Remen’s book on death, dying, and healing, Kitchen Table Wisdom, which has taken up permanent residence on the footstool in the guest bathroom, filled with the sticky notes he inserted because he read it before we became engaged, and I wouldn’t let him write comments in the book. Now I rather regret that; I think it could have been another insight into the thoughts and feelings of this man I love so dearly.
I tidy the bed every night, tucking in the bottom of the sheet and the bottom of the quilt I made in three weeks, twenty years ago, for my fortieth birthday, then laying the afghan his late wife’s stepmother (I think) made for him on top of both. We sleep warmly, but not too warmly, under one layer of Pottery Barn and two layers of love. By the time he is up for good in the morning, I am long since out of the bed, and he has mummified himself in all that fabric, but starting the night with everything just so, minimizes the chance that he will trip over the end of the quilt, or the blanket, and go flying.
The Packers lost. I popped a button off my favorite denim jacket and will have to reattach it. One of my sheepie glasses got broken yesterday; I found it wrapped carefully in a grocery sack but left on the kitchen counter. I suspect that might have happened while we were at the bank. I was a little sad for a few seconds, but it was made of glass, after all, and glass eventually breaks. (This is why I am not keen on collecting crystal. Melted sand, artfully crafted, ridiculously priced, and destined to become shards, if not in my lifetime then in somebody’s.)
There was a modicum of progress on the second part of the fake vest for Beloved’s sweater. We have stayed up far later than usual, ever since we got the word from his oncologist that there is so little time left. It is as if we do not want to waste what we have, sleeping. Although Beloved dozes from time to time in his chair. That’s OK. I’m with him, and for now that’s all that matters. When he is awake, we talk, we laugh, we cry, we talk some more. I eat. Not a whole lot, yesterday, and healthy stuff for the most part. I fought sleep all day.
I had coupons for, and brought home, seven six-packs of Ensure at $3 off per pack. Heaven’s blessings upon the dietitian who thought to give us those coupons!
When I awoke yesterday, before all the to-ing and fro-ing, I sat on the edge of the bed and got my jeans up to my knees, then just sat there for fifteen or twenty minutes, thinking about stuff. We didn’t finish the day with another closet emptied, or anything like that. But friends came over to visit, and nobody stayed too long, and I made a decent if uninspired pot of risotto for dinner, and Beloved managed to eat about half a cup of it (no room for the buttered baguette slices, so at great personal sacrifice I polished them off). No romance yesterday or last night, but lots of love in our house.
It was a good day.
He woke me about 4:30. He had spent most of the night sitting upright, when he wasn’t emptying a bagful of blood into the commode. Finally, finally, he nudged me awake, and we got sufficient pressure applied that it stopped, and I prepared a colostomy bag for his use, for the first time, and we did all this together, without having to call in the paramedics or make a trip to the hospital. There wasn’t anywhere near as much blood to clean up as last time, and that’s all done, with washcloths soaking in the bathroom sink to be laundered later this morning.
I really can do blood. Can’t do mucus in its various applications, but I can doctor and bandage without turning a hair.
A bit of (darkly) comic relief: at one point, while he was getting back into bed, he caught his foot on the edge of the plastic carpet protector under this chair, slicing his toe. (That’s not the comic part. Thought I should reassure you.) So for a few minutes I was on my hands and knees, applying pressure to his toe, while he was applying pressure at the stoma. The comic part was when I was laboring to stand up again. I was laughing so hard at myself that it was hard to leverage.
I pulled twelve messages off our phone yesterday, before the game, writing down the numbers and who called before deleting each message. The oldest one went back to Christmas Day, a call from his sister who was visiting her daughter in Wisconsin. Most of the messages were for things we had already dealt with. Two were notifications from the pharmacy that a prescription was ready. I picked the first one up on Wednesday. I forgot to go pick up the second one last night. Feeling very much like the Bad Wife, because it was for his hydrocodone, but thankfully he still has two left after I brought him two about an hour ago. I will pick up the refill on the way to church today. Definitely an ox in the mire, and I’m sure that Heaven will both understand and forgive.
I still haven’t prepared my lesson for Sharing Time today, but I did find the 2013 manual, and I am heading out to the living room in a few minutes to work on the lesson. I also found the safe place where I stowed my copy of the second credit card after it arrived, several months ago, and I tried to activate it from a different phone than it was expecting, and it laughed at me. I will take care of that tomorrow.
I. Am. So. Tired. Not depressed, just tired. Maybe we will get to bed before midnight tonight. That would be nice.
He is moaning less. The hydrocodone must be kicking in. His shoulders are giving him fits, more than the wounded toe, or the aching and distended liver. He has downed two Ensure in the past hour or so, because all the boys are planning to come to church with us today, and he is determined to make it to church. We will have one of them bring him home after sacrament meeting.
I want my mommy.