Temper and Patience

Richard likes to tease me about my Irish temper. He will tell you that he doesn't see it often, but when he does, it strikes fear in the bravest of souls. He also likes to tease me about my lack of patience. I'll own the former; I take exception to the latter.

Richard remembers the rare eruptions but he never seems to notice the LONG fuse that I often douse myself before it ignites the dynamite.

It's been a long fuse of IV antibiotics. (you may have noticed in my Germ Warfare post)

They drew another Vanc level this past Monday. Rich was becoming increasingly weak, loss of appetite, increased headaches, cough, intermittent fevers. We reported this to visiting nurse as we were instructed to do. We were told these are not symptoms of vancomycin. Monday night I gave him his scheduled dose. Tuesday morning he got his scheduled dose. Tuesday afternoon visiting nurse called to let use know his “vanc level is through the roof. Hold the next two doses and resume with only one IV daily.” REALLY? Really....

So let me get this straight. This is the second time in a week that his vancomycin level has been so high the dose was cut 50-100%. The exact same symptoms were reported and dismissed. But this time there was no rush on the lab results (even though the symptoms were identical to the last results) so he got TWO doses after his vanc level was through the roof. Nice.

All day Tuesday he was so weak he could barely 'get out of bed. Tuesday night was awful!!! We managed 60-90 minute naps throughout the night. Richard had chills, followed by fevers, with a headache that had him curled in the fetal position in tears. The rotation continued throughout the night. On more than one occasion I told him we had to go to the ER. Each time he got angry and flat out refused. He said “They're the ones poisoning me. Why would I go back there? They don't listen to a goddamn thing we tell them.” Holy Shit—this from the Model Patient of Total Compliance?!

Wednesday I wanted to call the doctor. Richard refused in such a way that I suspected our marital status was at stake. His argument was “they'll tell me to go to the ER. I'll get admitted. They still won't listen to anything we tell them, and they will continue to dismiss my symptoms as not having anything to do with anything they're doing.” I have rarely seen my husband angry, and less have I seen him this angry. This from the man who has always believed that doctors must be obeyed on rank and status with Catholic nuns.

I remember at one point during his latest hospital stay I asked the doctor if he could be having an allergic reaction to the new chemo. The doctor explained that wasn't possible “because we didn't give him that much.”

REALLY? Really... If you're allergic to peanuts.... how many peanuts are too many peanuts?

Not only are they not listening to me... I don't think they're listening to what comes out of their mouths.

We have established and they have acknowledged that Rich does not present typical symptoms. Therefore, I confirmed before discharge that any symptoms would be acknowledged and considered. I love being lied to, it reminds me of childhood.

For some strange reason I was okay when they were just fucking with me. I was okay when it was just me being ignored, dismissed, patronized. I could even kiss their asses through it all as long as they were focusing on Rich. But now Rich has lost faith and confidence in them and I don't know how to deal with that. If we no longer have the team, then it's just me. Just me.

I've spent the last few days feeling the entire world shrink around us. There is no one to turn to, no one to trust, no one who's listening.

Today is his second day without Vancomycin. Yes, I held one extra dose. He is vastly improved. He's actually been up a bit, and able to converse. So do I continue to hold the vanc until I get some answers? Or wait for monkeys to fly out of my butt? Do I risk a flare of the infection if I hold the antibiotic—not completing the full course? Where do I go for help? The doctors shake their heads because he doesn't have symptoms that match his diagnosis. When I report his symptoms, they dismiss them because they don't match his diagnosis. Who's on First? I don't Know.... Third Base.

I am trying so hard not to waste my energy on anger. I swallow frustration until it overflows in tears. The next phase is Numb. Entering the Dark Irish Silence. Please move to the rear of the bus. Seatbelts are not an option—interpret that however you like.