I was wide awake at 2;30 this morning. Too late to take a sleep aid; too early to get up. You can only work so hard at falling asleep before you have to give up the fight.
On the positive side I got to the hospital by 6:30. The night nurse was doing Rich’s morning blood draw, and it is just painful to watch anyone try to get blood from this man. His pic line is too plugged up to give a return. She managed to get it out of his hand, but it was the longest, slowest blood draw I’ve ever witnessed.
Two attempts and three hours of “cath flow” finally worked and by 09:00 the day nurse was able to get a blood return. Holy Crap those two nurses earned a full day’s pay in thirty minutes. They’ve increased his dextrose IV to 70%. I say let’s just hang a bottle of Karo corn syrup and give the insurance company a break on billing.
The first twenty minutes I was there I thought Rich was just tired. He was unaware of the needle sticks and blood draws. Then he started talking after the nurse left and I quickly realized we were on the bus to visit the Hedge Hog People. If I didn’t know better, I’d swear he’d just downed a six-pack, OR, someone had accidentally given him a Reglan. I didn’t smell beer on his breath, and the nurses confirmed for me that Reglan is on his allergy list.
Dr McGee came in and seemed oblivious to Rich’s slurred speech and mild confusion. He probably assumed as I had that the man was just exhausted. And let us never forget how Rich will rally for his doctors. Rich asked him about his golf game and Dr McGee was wonderful in relating yesterday’s double bogey, bogey, and double bogey. He told him how the greens were running at Chippewa. Rich was happy.
Then Rich asked him to restart the chemotherapy and Dr McGee told him he had ordered it.
BACK THE BUS UP, PEOPLE.
Now the bitch (me) has to explain why that’s not a good idea. Rich wants to come home, and in order for him to come home I’m going to need the kind of help that requires Rich is no longer being treated other than palliatively. Work with me here, dude. On the fly I managed to get us back on track without using the word “hospice” in Rich’s presence. Dr McGee agreed that we’d wait to see “how all of this goes” before we restart chemo and Rich nodded agreement.
Maybe Dr McGee just has to agree to whatever Rich asks for and is trusting me to keep the ship on course. Maybe. I don’t know. The only time I can talk to any of them is at Rich’s bedside so I’m not sure what they’re really thinking.
As it turned out, my gut wrenching attempts to dance around the “hospice” word was a wasted effort. Rich had watched us intently as we spoke and didn’t remember a word. Five minutes after Dr McGee left the room, Rich said “I wonder if Dr McGee is coming in today.”
Rich drifted in and out of sleep. As he lay there dozing, he kept reaching up to the ceiling like he was trying to snag butterflies. Then he’d mumble a bit. Then he’d wake up and smile “Hi, pupshn, I didn’t know you were here.” He looks around like a newborn seeing the world for the first time. He tells me he saved a section of the newspaper that gives listings of where all the Farmers’ Markets will be this summer. When he gets out of here he wants to go the Farmers’ Markets, long pause, and he can’t wait to get out on the golf course, long pause as he searches the walls like he’s reading hidden messages. I agree with everything he says
We had the same conversation several times between his naps.
Then the infectious disease doctor came in. It’s like being visited by the energizer bunny without Pink. He asked Rich if he had any nausea/vomiting and Rich said no. I had to tell him that Rich has thrown up three times since yesterday. While the doctor is buzzing about Rich I try to tell him that we’ve got some mental status change going on. At one point he might have nodded in my general direction but it happened too fast for me to register it.
Then he asked Rich, “Any fevers?”
“Nope” Rich smiles proudly. Okay that part was true. Now I’m wondering why the nurses even bother charting if the doctors’ information comes from the soon to be Mayor of the Hedge Hog People. I then try to bring this doctor up to speed because he wasn’t on the last trip to Looney Town two years ago. If you’re new to the party, I’m going to cut you some slack. I’m telling him that Rich doesn’t run a fever, save briefly early on, and then…” I just shut the fuck up, because either this guy isn’t listening or he has a PhD in multi-tasking at a speed that leaves me chewing the bus’ dust. He’s nodding, ripping off the paper gown, and I think there was a flash of hand-shaking and he was gone.
Show over, Rich doses off. I watch him. He reaches up like he’s trying to hug someone and he’s smiling. Some mumbling. Then his arms are up in the air again and he’s smiling and I can only guess he’s conducting an orchestra. A little while later he wakes up, surprised to see me, and seems fully alert. He tells me that someone just came and kissed him on the temple and he hopes I’m not angry about that. Then he’s gone again. Yesterday he was fully alert and pleasantly relating his last wishes to me.
It never fails. Three seconds before I’m destined to self-actualize, Lynn calls me.
I don’t mind being in Hell. I’m used to it now; I’m getting fairly good at decorating my room there. And Buddy told me they serve marguerites in Hell. Still, it’s better to have someone to sip them with you.
We talked for awhile. I’m lost in the sludge of trying to be cooperative with his doctors and being Rich’s advocate. I’m tired. I’m torn and confused. I want to crawl into bed beside him and enjoy the butterflies floating above the orchestra. I’ve told everyone that he’s not himself. They smile and nod. Lynn brings me back to center.
I’m trying not to get swallowed in anger and frustration, but here’s the thing….
I recently bought a Little Giant Ladder so that I can take on more of the home maintenance care and Rich’s old ladder scares me to death. The ladder came with an instruction book AND a DVD. Do you see where I’m going with this? I need some instruction here, people. What are we doing? What’s the plan? If you’re all just responding to him in a way that calms him, that’s great. Just bring me on board. What’s the price of a clue, because I’ve got cash, credit cards and a stack of Monopoly money right there in my purse.
Two minutes after I hang up with Lynn the hospitalist (Dr in Charge) comes in. He does his thing, I wait. When The Question comes, I’m ready. I calmly explain (in brief) what I have witnessed over the past six hours. I then explain (because he is also new to the party) how Rich deals with infection. He’s not going to give you the proper symptoms to correlate with the real problems so I need to know that you hear what I’m telling you. He briefly runs a fever, then three days later he’s conducting orchestras and planning his campaign to be mayor of Hedge Hog Land.
It went well. Then he answers my next question with the assurance that I’m not going to get 30 minute notice of discharge and things will all be arranged. Right now they’re trying to deal with the infection in his right lung. He gives lawyer directed doctor speak that translates in my head as….”we’re fighting this hard, but it’s really bad.” Rich is not going anywhere like this.
Rich occasionally interjects in the conversation in a manner that suggests sleepy confusion. I’m starting to doubt my own sanity.
I’m the only one on the Bus. Staff walks in, Rich pulls the bus over, gets out and politely gives them directions. I watch helplessly from my tear streaked window on the bus. Staff leaves, Rich climbs back into the driver’s seat and off again we go to visit the Hedge Hog People.
Rich is now exhausted and I’m suspecting that he’ll sleep better if I’m not there. They’ll be coming to get him soon for another radiation so I feel like it’s time to leave for the day. Before another nurse comes in to attempt an arduous blood draw and I offer to open all the veins on my left wrist for them.
I drive home telling myself that tomorrow will be different. It will still be shitty, but it will be a Different shitty.
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