Rich was discharged from the hospital four weeks ago. We're waiting for some improvement. It doesn't come. I'm still full of encouragement for him, but only in terms of what is already tangible and accomplished and there is precious little of that. I haven't abandoned hope, but to speak of it seems blasphemous at this point. Trust me, there are times when even words of encouragement are inappropriate.
We are where we were at four weeks ago, the only difference being that we've been through four more weeks of shit, no signs of improvement, and diminished strength to persevere. Rich still spikes fevers daily, mainly after eating, and no one has a clue what that's about. We finally resolved the debacle of the discharge orders for the drain tube and it is now putting out over 200 cc daily. The vancomycin dose has been adjusted three times, and the anti-fungal changed from IV to PO. Frontal headaches about the brow continue to ambush without warning at least once a day. He's still up three or more times a night to pee. There's 2-4 coughing fits daily that can last as much as twenty minutes a time. Over all he's too week to accomplish more than ambulating from the bedroom downstairs to the family room. His appetite gets worse every day.
When he didn't feel noticeably better after his transfusion last week, I went and bought a glucometer kit. (and just because it says on the box Complete Kit, and shows all the components necessary on the picture---read the fine print. The test strips aren't included—everything but I discovered when I got home at 08:30 am Sat morning and had to go back to the store). I did his fasting blood sugars for three days and spot checked two post-prandials. I have never understood why he was getting blood sugars and receiving insulin three times a day in the hospital and sent him with …. NOTHING. His fasting blood sugars were between 128 and 153 over labor day weekend.
Today we saw an endocrinologist. She ordered testing four times daily with insulin three times a day. She also ordered more tests. This would be easier for her to work out if Rich's tumor was carcinoid, but it's not.
Then we saw the oncologist. He asked if Rich wants to go back into the hospital until they can get him feeling better. Rich almost laughed, but he replied with a FIRM “No thanks, they're trying to kill me.” To McGee's credit he did not jump to anyone's defense. Then he tells us he wants Rich to have an MRI of the brain because he's concerned about the headaches. Perhaps I read between the lines but McGee was watching my reaction as closely as Rich's.
Rich napped the rest of the day until visiting nurse came to change the dressing on his PIC line and draw his Vanc level. They politely informed me that I need to start doing his IV earlier in the day because the need to draw the blood within an hour of the next dose, so if I give it to him at 6 pm, that's putting them into overtime. Politely explained that my IV schedule enables to take whatever doctor or test appointment available. She explained that wasn't working for visiting nurse. I would have to graduate towards earlier time of day. I assured her that I would explain to the doctors that they would have to work around visiting nurse's schedule. In my defense, it had been a long day following a lousy weekend and just wasn't feelin' the love.
Tomorrow we have an appointment with the Infectious Disease doctor. Calm me cynical, but what's the point?. This could definitely be phoned in.
Thursday we go for lab work and an MRI of the brain. It's hard to believe that any of this is leading us any closer than we've already been. Every day I watch Rich's spirit more and more ground up. He continues to make the effort for me, but each day he is increasingly quiet and withdrawn.
But we did turn a corner today. I wasn't prepared, like driving down a busy street and suddenly you turn left as if it's the most natural thing to do, only to discover that it's the wrong street, everything is different and unfamiliar, but its a one way street and there's no turning around. Even if you can find your way back, you're never going to be the same.
It happened this morning as I was waking up. I rolled over to get closer to him, to reach for him. He jerked protectively from my touch that was too close to his PIC line, and turned his back to me to protect the drainage tube from his liver and the tender area around it. I could tell he was still asleep by his breathing, but I was instantly awake. It was as if someone had pulled back the fog and I could see clearly. In that lonely, sleepy gesture I turned a corner and realized I was no longer his wife, I'm his nurse. It wasn't that moment alone; it was that moment wakening me to what the entire day would hold. How the recent weeks and months had been re-weaving the fabric of us
I spent the whole daily feeling sad and miserable, unsure. The only thing worse was that Rich didn't notice.
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