Slip sliding away...

We saw the surgeon this Friday afternoon for follow up. Having this appointment was the only reason I did not take Rich to the ER. That, and the fact that the slightest hint of going to the ER will reduce him to Fight/Flight mode in nano seconds.

Rich's confusion and hallucinations were a bit worse today. I've been trying to tell myself that we're dealing with severe sleep deprivation due to his need to urinate every two hours. With minimal effort I can reorient him. Up until today his hallucinations only occurred when he was dozing off. Today we seem to have graduated to a new level. I can reorient him to place—mostly, but not to time and his speech has become a bit more garbled, or am I just a bit more tired? It was a long damn day until 2:45 when we could head out for the doctor visit.

We walked into the waiting room and my heart sank. It was full to overflowing. There was a quick shift in intake and we managed to get seats. I sit frozen with fear that he will begin hallucinating that he is back in his high school play, dead friends have come to visit, circus performers are entertaining all gathered. I sit and knit—each stitch a prayer that I will not cry. I knit like I'm weaving a coccoon around us and Rich's imaginary friends. And the back up in the waiting room tells me we are running seriously behind schedule. I can't fix that. I focus on stitching the coccoon and using my witchy powers to manipulate time.

I remain existentially calm and subtly waft it in Rich's direction like a fart under the blanket. Now and then he holds his hands up like he's reaching for something and they tremble horribly, and I just reach over and pat his hands and he settles again. Just when I think I'm going to enter the next hour of waiting as peacefully as the first, another patient takes notice of Rich's hat and wants to engage him in conversation about his former employer. I knit harder. Turns out Rich used to pick up and deliver to this guy's former employer and the guy wants to connect all the dots of reminiscing. I have encountered this guy in this waiting room before. He needs to be in constant conversation with any hapless victim who doesn't know how to knit a force field. Rich struggles with the converation, but I quickly realize the other guy is clueless because his motive is not to hear but to be heard. I'm almost hoping Rich will introduce the guy to the dancers in the empty chairs.

Poor Dr A. He's expecting a routine post-op visit to remove the staples and check the J-P drain. I don't know if he feels my tension or reads my face. He asks “how's it going” and I reply “not well.” Despite Rich's distraction with the workings of his brain, I find it difficult to talk about him like he's not in the room. I'm trying to use my best ”nurse reporting to doctor” voice but there's a huge lump in my throat that's causing my eyes to leak. I can see that Dr A is listening to me and watching Rich.
We review the current med list and Dr A agrees it was good to stop the Reglan. He also agrees with Dr KP that nothing else on the list would be causing this. I practically beg him to tell me that this is just a matter of sleep deprivation due to having to toilet every two hours. All he can say is “well, that's probably not helping.”

Surgeons' exam rooms are for explaining the coming surgery and then checking their work afterwards. Any bad news is delivered in surgery waiting rooms or bedside in the hospital. Therefore, sitting in Dr A's exam room, I don't see a box of tissues anywhere. This is the one time I am without a handkerchief. I am never without a handkerchief. It is like an adult security blanket. I'm trying to discreetly dab my eyes with my sweater sleeve and focus on the little voice in my head that is screaming at me to TURN OFF THE TEARS.

Dr A is removing staples and checking drains and removing drains and trying not to look at me. He's very focused on Rich. Finally he explains that Rich might be peeing every two hours because he's not emptying his bladder. It's probably an enlarged prostate. Great. I was afraid the prostate was going to be left out of the problem soup! I wonder if it could be the MULTIPLE radiation doses between therapy, monthly CAT scans and x-rays. I say nothing. Then he addresses the elephant in the room. The first word started with an “M”, and as sure as I was that I would remember it, I don't. The second word wiped it out of my brain—encephalopathy. He explained it but it wasn't necessary. He said it was like the dementia a long-term alcoholic suffers with scirosis. The liver isn't working so the toxins stay in the bloodstream and effect the brain. Hence, the garbled speech, hand tremors and audio/visual hallucinations. THAT diagnosis really needs to come with a box of tissues. Of course, that's not an official diagnosis. That would require more tests. I wonder if he understands that my FMLA runs out in one week. Can we get all this under control in the next week?

Throughout the visit Rich interjects bright, lovely comments that have nothing to do with what's happening in our dimension. I get our prescription for Flomax, explain to Rich three times what is happening and we head home. I can finally let go with full sobs, and I'm still not the worst driver on the road. Rich is oblivious to the sobs which only ramps them up. Now and then he talks to his brother Ed who is sitting in the passenger side window.

God damn. We have jumped so many hurdles only to land each time in a deeper pile of shit. I'm falling, falling, falling. I feel the suction of the Black Hole of If Only, countered by the pull of the Black Hole of WHY?!.....perfectly triangulated by the Black Hole of What the Fuck?!? What is the spiritual equivalent of a Ph.D. In physics?

The doctors have been practicing for the last eleven weeks of my FMLA. Now I have one week to pick up the pieces and create a new world for us. Now it is Saturday afternoon. Rich is sleeping. He is sleeping like he's making up for every minute of sleep he has lost over the past eleven weeks. I trot up the stairs every hour or so to check on him. He wakes easily, no fever, I manage to get his meds and fluid into him. He sleeps peacefully, but with determination. Each time I head up the stairs I fear what I will find.

I struggle to understand the miracles that have brought us to this new room in Hell. As painful as this struggle is, I fear that if I stop struggling I will shatter. Truth is I'm not a fighter, I'm just stubborn. My father used to say “LisaRuth you are like a dog with a bone.” I just hang in, and keep on and wait. Rich has always teased me for my “lack of patience” because I can voice frustration to beat the band, but after all the venting, I continue to wait. My father said I “could wait a person to death”.

How crazy would I be to believe that there is another miracle in our future?

I have never felt this ground up in my life, and I've done serious time in the Grinder. I can't stop believing. “the nearer your destination, the more you're slip sliding away.....”