Call it progress or stagnation

Today is Cyber-Saturday, not that I’m shopping. I’m at home, making sure my husband can get up–from whatever situation he’s in–when he needs to. He’s putting on weight. It’s harder to pull him to his feet, but there’s no muscle there, and he’s not helping to create it. He stubbornly refuses to exercise, so it was no surprise that on this past Monday, oncology appointment day, my husband said he was too weak to go. He just couldn’t get up.

I was insistent at first. We’d get a wheelchair at the center. You just have to walk to the car, I said. You can use your walker. But he’d have none of it.

But when I realized the tincture of opium responsible for successfully slowing his diarrhea was slowing him too, physically, I rescheduled for next week.

On Tuesday, I finally got one of the visiting nurses (there are two, one to flush his biliary stent, another the pic line) to understand how weak my husband was. He spoke to our physician’s assistant. Within a day, she called to say she’d schedule physical therapy. I asked for a better toilet seat–one with adjustable legs that would fit over our toilet bowl as my husband couldn’t lift himself from the one I’d bought, which already added 3 inches of height and had two raised arms for him to push off.

She agreed to seek that out as well. As we spoke, I was certain she was measuring my sanity and capabilities, especially when she said I was doing the job of five people. I was surprised at that, and, if I may be so bold, proud to be so recognized, but as she suggested home nursing for a few hours a day I realized she thought his care really was too much for me to handle, that I might be missing key clues to his condition that a trained eye would see quicker.

I agreed. Better care for him and a reprieve for me? Win. Win.

Especially as I’m a jinx. Yes… a jinx.

Last Saturday my husband, clad in sweats and no underwear, had a mega-accident. He struggled from the couch, and couldn’t move fast enough once on his feet to heed his body’s call, and capitulated to its explosive force there and then. Yes, clothing, socks, shoes, carpet and wood floor–and himself–all had to be cleaned. After caring for him, the carpet, floor, and couch, I bagged his clothes and took them outside, where I hosed out the solids and hung the clothes to drip. I wasn’t going to drag sodden clothes through the house to the laundry in the basement.

After an hour and a half’s work, all I could smell was, well, you know. I vented by texting his sister, who asked why he wasn’t wearing diapers? She’d told him to weeks ago. To be honest, the idea had never occurred to me, and even if I had thought of them, I’d have felt sorry for him–a blow to his masculinity and all–but now aware that HE knew and never said or did anything about it even after I’d cleaned him, the carpet, et al, I stormed into the den and thundered at him.

And went to buy him Depends. I refrained from calling them diapers, though clearly his sister had, and insisted he put them on. He employed one childish delaying tactic after another–would I get him a glass of ice; did I know where his phone was; his watch; bring him some watermelon.

And so it should come as no surprise to anyone who knows me that I lost it. I screamed like a lunatic that he’d put them on or I’d leave him to rot there… and then helped him off with his shoes and sweatpants, and on with the underwear and clothing again. <sigh>

Three hours later, he raced from den to bathroom on his walker. Didn’t quite make it. Another explosion painted the white bathroom–toilet, wall, floor. It was my fault, he said. I’d jinxed him making him wear the damned underwear. Yep. My fault.

Y’know? I wasn’t the slightest bit upset. It just struck me as absurdly funny; that for some reason, his accusation, failure to see the humiliating accident for what it was, was a very male thing to do. Even after cleaning him up, dressing him, and sanitizing the bathroom with Lysol while wearing rubber gloves, I was thankful for the Depends. A tile bathroom’s a lot easier to clean, Lysol’s easier on the olfactory senses, than well, again, you get the idea.

Jinx. I’ll jinx ‘im.

Ten days & two stents later…

When we last left our heroine and her not-so-helpful mate, he had, well, to paraphrase the line from a medical device tv ad, ‘he’d fallen and he couldn’t get up.’

The fall had dislodged the stent, which began leaking at the point of insertion. So, off we went to the hospital on Tuesday to have the stent checked. He fell getting out of my car, and was wheeled about in a wheelchair.

The stent needed replacement and the doctor did it then with a local to dull the pain. My husband was not pleased. As I’ve mentioned, he’s pain-phobic. He gasped and groaned all the way home and for hours afterward–even after I returned from taking my mom to her doctor’s appointment–but his pain turned out to be the least of our problem.

The doctor decided, since there was leakage in the stomach cavity, to vent the bile externally, through that tube part of the stent. The doctor preferred we leave it that way, emptying or changing the bag. He felt it was better going forward.

Well, going forward to sometime in the early hours of this past Saturday morning, we find our heroine being called around 6-ish in the morning. “What’s up?” I yell downstairs.

“We have a situation,” my hubby says.

“What happened?” I say as I hobble downstairs on sleep-numbed legs, leaning heavily on my cane.

“I pulled the stent out in my sleep.” The whole stent. He pulled the whole stent, which was attached to the external tube and bag, out of his body. Bile wept from the incision.

I called the IR resident on call. The short of it–the doctor called back within the hour. We determined that, since authorization was necessary for a “reinstallation” (hubby hates that term. Makes him think of tires.) and since doctor knew we’d be sitting in Emergency all day and possibly into the next trying to get authorization on the weekend, we decided doctor would call our insurance carrier for authorization on Monday and let us know when we were good to go–with, as hubby insisted–anesthesia. Turns out installation day was yesterday, Tuesday.

This left us with three days of a bile-weeping wound. What was the best way to contain it, since bandages soaked through in 10 minutes and the bile irritated his skin? It took only an hour to determine that the best way was not to bandage at all, but to absorb it with clean towels rolled into flattened tubes, wrapped around his torso from stomach to back, and changed two to three times a day, along with his shirts and sweatshirts. Lots of laundry, and luckily, I have a stash of bleached towels I keep for non-public display, well, actually, for bathing the dogs and mopping up clothes washer overflows.

Tuesday morning came earlier than I wanted it to, with my husband calling me from the kitchen. He’d fallen and couldn’t get up. We spent half an hour trying various scenarios–too low or high and he has no leverage. We tried chair seats, stools, a case of dog food. Nothing put him in a position where I could lift him. In the end, I had to call our neighbor, who came on the double and had my husband up on his feet in seconds. Heaven bless the man! I know we women have lower body strength, but it was upper body strength needed here, and I just didn’t have it.

After that, my husband and I arrived at the hospital bright and early–well, early-ish and in the pouring rain. He had to have blood drawn for testing prior to the procedure. I pushed him in a wheelchair to avoid another fall. The day was long. It usually is when he demands anesthesia as the wake up time, lengthy as a matter of course, seems more protracted with each procedure. This time, he was out of procedure well before 1pm, but wasn’t alert enough to leave until 3pm. He kept asking me how he got there. I’d tell him but he couldn’t remember. That part’s scary. Dressing took forever. He’s still very weak and required help to dress and to stand. Otherwise, everything went without a hitch.

My hopes were higher as we left the hospital, as we had the stent issue solved and we’ve finally stemmed the diarrhea tide. To do that, however, we had to stop both oral chemo drugs and put him on tincture of opium. It’s a small amount–0.6ml every six hours–but it works. Thankfully.

I keep saying he’s still very weak. Part of that is his doing. He refused the therapeutic vitamins meant to add muscle. He refuses to walk in the house or outside (for November the weather’s glorious–60s with strong sun), and tells me to leave him alone when I try to reason with him, but expects me to help him rise from couch or toilet as needed.

In the hospital yesterday, I met a woman whose husband was in remission from his myeloma. Her sister has dementia. She wept explaining her frustration at being pulled in two directions, then listened as I vented and cried as well. I’m not so weepy today, only frustrated that hubby won’t move more.

I’d hoped to do some sort of comparison with Danny here, but, although I know precisely what I want to say, I’ve gone on too long already, and will save it for tomorrow.

Will our heroine maintain her sanity until then? Will she coerce her mate into exercising? Or will he fall again? Will she push him down the stairs? Be sure to tune in, folks, to find out.