Day 1325

An Interlude - not MY family at all for a change! 


Yesterday I had to go to a viewing. One of my favorite tech’s husband. I made the diagnosis right around Christmas off malignant ascites fluid. Bad adenocarcinoma with skin mets at presentation. Unknown primary - there was a lung nodule but nobody needled it and colonoscopy was negative.. Doesn’t really matter where it’s started as he died within a week or ten days. Little suffering. 

On Friday I got a panicked call from his doc who is a Glamour Girl I’ve never really liked all that much - either internal medicine or FP but quick got involved in the information system stuff because doesn’t like grunt work. Smart but not -as- smart as her elegant good looks have everyone convinced she is (yeah that’s probably some of my own ugly showing.)  Anyhow she said his widow wanted to know where the cancer started and asked her to call back and she was clearly nervous. So I calmed her down. Soothing words and tone. I said we’d never know for sure but given the whole picture probably pancreas. Which is a good thing to tell The Lay People anyhow as “pancreas bad” is part of the communal gestalt. So fine she wanted to babble on phone about how she kept suggesting he get this or that but he didn’t want the Co pays blah blah and I’m thinking that yeah, skin Mets at time of presentation kinda suggests really independent patient in a big way. I’m also thinking “ah...this is a bunch of guilt she wants shriven by me.” I -really- don’ got time but I say some  more nice things and tell her that I will be at viewing and that I will tell the widow same thing about pancreas if it comes up. Can’t do better than that, right? 

So fine, viewing HUGE. Whole town lined up. I never met or even heard guy’s name prior to diagnosing his illness so I am sucker punched to find he looks like my husband, was an animal nut like my husband, all the pictures are with their dogs, he clearly really loved family, they were married same year we were...I was hit with big waves of empathy and survivor guilt. Dealing with it but choking up myself because I’m instantly so sad. Guess who falls into line behind me? Glamour Girl Doc. Joy.

At least she doesn’t want to chat in line. So fine we get to the part of the people-snake where we can see the widow with adult kids on each side. The person in front of me is spending a really long time talking to an adult kid just in front of my tech the new widow. I’m patiently waiting because we don’t rush these things. Glamour Girl jumps ahead of me and the person to start talking to the new widow. Well, okay. Gets her outta there sooner, right?

I wait for the talker to finish, shake hands of the kids  “hi I’m Samantha I work with X—-” and get to the widow. She’s happy to see me; we talk. I do in fact repeat the pancreas thing but I was right; she doesn’t care where it started any more. Told me the one thing she regretted was bringing him to the hospital at the end. So that’s all fine.

I almost walked right by the viewing area as he was cremated and the little box was in front of a kneeler —where Glamour Girl was still kneeling after my extended wait and chat. Silent but eyes shut. So I waited...deliberately thinking nothing at all because who am I to dis any faith practice? Finally she crosses herself and leaves. So I kneel, make like I’m praying, look appropriate for what feels like enough seconds and get up to leave. I’m putting my coat on in the vestibule thinking “survived THAT and it was the right thing to do” when Glamour Girl pops up at my left putting HER coat on too.

Joy.

We walked out together and I got another version of how she feels bad he came to her with dysphagia and she wanted to get a CT scan but he didn’t want the copay and a lot more in the same vein and she used the phrase “and I -had- to respect his wishes” at least three times in less than five minutes and I was thinking “lady this isn’t -about- YOU” and also “the family must’ve known that’s how he was” (especially after what New Widow said about keeping him home.) 

So I said “Frost. The poet, you know? Frost?” (I said it that way because I could NOT come up with “Robert” —  my brain kept giving me “Jack” which I knew was wrong and John didn’t seem right either.) Anyhow she shut up and maybe nodded so I continued

“Frost said ‘ I hold it to be the fundamental right of anyone to go to hell in his own way.’”

She got a super shocked look on her face, said “or Heaven!״ and walked away fast the other direction.

So now I’m the asshole, right? 

Day 1322

Well blogfriends it's a new year and a new decade huzzah!!   I thought I'd be sharing a well-after-the-fact Work Thing that knocked me for a helluva loop back before Christmas...but the Universe runs at lightspeed and bigger news completely displaced it.

On Sunday (which was, lemmesee...oh yeah, the 29th) I took Youngest Duckling to the ER in a florid psychotic state. Pure mania, complete inability to separate what was real from what was unreal, big delusions. Spent most of that day helping Security keep her in the ED bay long enough to get her admitted which was...challenging.  She was one of the funniest psychotics I've ever helped restrain but it's still hard to hear "you tricked me into thinking you were my mother" multiple times in one day, disease or not. She called my friend the security guard a "dickhole" during one of her escape attempts; that stood out among all the more garden-variety obscenity. 

I was thinking "well this is schizophrenia, pure and simple" and was surprised the docs were all hemming and hawing and "well we need to cast a wide net" and "we need to consider possible toxin exposure" and "let's take this a step at a time."  Looking back at what had happened over the previous few days the events were so classic you could have lifted them from a psych textbook. So why all the fuss?

Medicine is such that twenty years is a big chunk of time and my training is dated.

I’m not supposed to say the S-Word because the disease is now broken down based on how long you have had symptoms. What she had is now considered an “initial psychotic break” and with proper meds and support some people may never have another. The next step up the ladder is Schizoaffective Disorder which is "they had another episode somewhere in weeks to months" but the actual S-Word now requires symptoms present for six months or longer. 

And what would the one hallmark symptom be? Here it is: unable to distinguish between real  and unreal experiences. That’s still The Thing and that’s what she did all over the place in the ER. BOY did she ever. Once you’ve seen it in real life you don’t ever forget it and I did a whole inpatient psych rotation so I’ve seen several variations on the theme. My big takeaway is that we are putting this new time-limit thing on top of the same old disease process mostly to make it less awful. Which makes sense: who likes something that hits lovely vibrant 18-25 year olds with a lifelong chronic condition?

Yeah, well...I literally learned how to read in part on those Time-Life Science and Nature books you buy a month at a time which had an article about the wonders of Thorazine so I’ve never been particularly scared of schizophrenia. I’ve known my whole life others including my mother were terrified of even the word but I see - and always have seen - this as totally just like insulin-dependent diabetes. Some people get that under control too; some don’t. I have, in addition to Carrie Fisher, been thinking of Mary Tyler Moore a lot recently.

In any case the treatment is the same for all three things: antipsychotic medication. So it seems the disease itself hasn’t changed, really. This new "initial" "affective" "real diagnosis" seems to be PR for “take your damned meds.” I see this event as showing us that her wonderful creative joyous self has a brain which can break in a really powerful way so that makes her a little more fragile than the rest of us now.  

She got admitted Sunday night and took us on a wild chase around the ward during which I learned this old fat body can still sprint if it has to -- I outran three nurses to catch her myself because I thought "ohmighawd there's a stairwell at the end of that hallway" as she flew by.  That was after she'd had two doses of Ativan and oral Haldol so she got intramuscular Haldol and I helped hold her for the shot. There's something I never thought I'd be doing but well, here we are. Monday she was starting to come back to Earth and she got released home with me on New Year's Eve Tuesday afternoon.

Tuesday night was hard because she couldn't seem to understand why I wasn't going to let her go to a New Year's Eve party at her friend's house even after we'd talked about it twice. She got tearful...but then was sound asleep by 8:15 so I had time to sew my ripped-up heart back together.  Yesterday wasn't bad but this morning when I got up at 6:15 I was surprised to see her awake in her room and when I asked when she woke up she said "four thirty" as if that were as normal as eight or nine...so we aren't there yet. 

The psychiatrist discharged her with only a week of the same antipsychotic her uncle takes because she plans to wean her off and see what happens. THAT is all part of this new approach too and freaks me out a bit because I'm thinking "damn, we just got her back from outer space; you wanna encourage taking off AGAIN?!?" but my friend the chief of psych says, "we do that now because if someone has an initial psychotic break, goes on meds for their whole life and never has another one we don't know if they needed to be on the meds, y'know, and they have side effects....but if they go off meds and have a -second- episode  then they get lifelong" which is how I think this is gonna go. 

So ain't that just a kick in the head? I'm glad I've got years of sobriety under my belt already because this might've been a big enough trigger if I hadn't.  I did Liver okay and I did Shoulder okay but Brain is just the one thing too many. 

Buy hey, I will survive and so will everyone else.  One thing I've learned over the past year: I'm one of the emotionally strongest motherfuckers I know.