Things have been made easier through the shared work of friends and family.
I’ll give you an example. Every Sunday night, the trash cans must go to the curb for Monday pick up. The trash bins from L.A. sanitation are tall plastic trash wagons. Steve used to haul two full bins at a time down the driveway without issue, manly beast that he is. He can’t do this anymore obviously and when I do, I can only do one at a time. Taking all four down to the curb isn’t a long process – 10 or 15 minutes tops. Longer if I stop to chat up a neighbor.
Right now that means 10 or 15 minutes out of the house, away from Steve. Putting aside the desire to spend as much time with him as possible, it means 10-15 minutes of time he’s unattended. He’s got a funny (to him) habit of doing what he wants, and that includes getting up and walking around without any supervision. He’ll use his walker, but his balance can still be unreliable and if he falls it can be dangerous. So if I’m outside the house, not only can I not hear him, but I’m anxiously and speedily completing whatever task I’m doing to get back inside as soon as possible.
Household tasks, especially those that are done outside, have lost any semblance of leisure. And if a neighbor stops to chat I have to beg off. Sure, I can take the time to explain. But then it becomes a whole sorrow dance and as much as I’d like to attend to their sudden sadness, I need to be rude and say, “gotta go, bye.”
You think you’re taking the trash to the curb, but really you’re keeping both of us safe and healthy.
Now multiply this to the myriad tasks needed around the house and on errands – grocery shopping, pet food needs, cleaning, basic maintenance, etc. A lot of the indoor tasks I try to get done while he sleeps. Cooking dinner has been made easier with the introduction of prepared food deliveries. The fridge is full and near bursting with the coziest meals people can make. I’m freezing whatever we can’t eat in time so that we have back ups. One thing that hasn’t changed is Steve’s need for variety. I could eat rice noodles and broth for a week and be fine. But Steve is not a creature of food habits.
You’d think I could take advantage of the memory issues and just tell him he didn’t have the same dish the night or the meal before. But I never lie to him. And true to form, if he knows he had it before, he wants to switch to something else. This is classic Steve, and inconvenience be damned, I treasure those windows into his personality more each day. Having multiple possibilities at the ready makes this manageable.
You think you’re saving me cooktime, but really you’re making it possible for Steve to be Steve and for me to enjoy him.
His recovery from surgery continues. Larry and I often have to remind ourselves that he had two brain surgeries just over a week ago. He sleeps over 14 hours at night and usually takes a couple of two to three hour naps during the day. When he is awake and aware, we’re usually meandering our way through things he wants to say. His word use is better than it was a week ago, but he’s still dropping thoughts midsentence and losing trains of thought before they leave the station. We can usually decipher by context. If he looks at the fish tank and says, “the pet food levels are low,” I can look at the fish tank and see that he means the water is getting low and needs to be topped off. I wore one of those Public Radio Nerd t-shirts the other day (black with big white block lettering) and he couldn’t stop referring to everything as public radio. “Where is the public radio voice,” ended up meaning he needed a tissue. He’s very suggestive, so I usually follow his gaze and watch his body language to see if I can find the real meaning.
And yeah, I won’t be wearing that t-shirt for a while. Sorry, NPR. Great shirt. But that was a really confusing day for both of us.
Our friend Linda, a.k.a. Farmers Market Fairy, was asking me if I wanted some particularly good greens from the market this week. I said for me, sure. But Steve has kind of given up on eating his greens, “because, you know, cancer.” Which turned into a conversation about the importance of good bacon. That was a good moment amidst the hubbub of constant sadness. They are possible, usually with the help of friends who get my sense of humor and who can see when the doors are open to receive theirs.
Oh, I still offer him salads and roasted vegetables and all manner of healthy forage, but if he shakes his head, I don’t fight him on it. There will come a point when chewing and swallowing will be compromised. While he can still lift a fork, he will decide what goes on it.
I haven’t been able to bring myself to stockpiling Ensure. It’s on my mind, but the thought of even having it in the house is too palpable an acknowledgement. Good whole food, well prepared is a hallmark of our relationship. He adores my cooking. I adore watching him eat it. It’s a mutual nourishment that feeds more than body. We both know when this stops, the end begins. So I’m holding off preparing. It’s probably not logical. Logic can kiss my ass.
There are so many people who really want to see Steve, especially before treatment and cancer compromise him even more. Please know that visitors are very taxing for him. When he has the strength, I always ask him if there are people he wants to see. He usually shakes his head. Not because he doesn’t want to see anyone. He actually does. But conversation is so difficult, and he often can’t answer questions directly. It’s one of the more exhausting forms of frustration for him and it shuts him down. I try to tell people to simply say how much they love and cherish him, but that’s so hard, especially as it often feels like a form of goodbye, and none of us are fully ready to go there.
The appointments continue. The calls with insurance agents do, too. Every day I wonder how someone would handle all of this alone. We are lucky in so many ways. We are lucky that we live in a time of technology that makes it so easy for people to organize help and contribute money to help defray costs. The money you contribute today is wired directly to our accounts the next day. I can write this blog post and when I hit submit, many of you receive an automatic notification that it’s up. Even better, you can respond to it and leave us messages. A few years ago, a lot of this wouldn’t have been possible. But the biggest point of gratitude we feel is that we have each other. He would suffer so much more if he didn’t have a loving and motivated advocate handling all of this.
As loathe as I am to point out the positives of cancer (it feels like a betrayal to do so), Steve and I have never been closer or more attuned to each other’s emotions or needs. The situation is catalyzing an evolution in both of us. An evolution that I hope will help carry us through whatever is coming.
Cancer isn’t winning. Like any form of evil, it makes the importance of good things shine.