Saturday, September 23, 2017

Friday night/Saturday morning. 
Can’t sleep. 
I am unraveling, frayed like an old-school spinnaker halyard at the end of summer.
Not a great day. 
Got to Weill Cornell around 11:30 and Ebony was having lunch. You should see how she smiles. She’s so beautiful. She was eating some kind of chicken with steamed veggies and mashed potatoes. I guess the hospital chefs are down for Autumn. 
Made contact with the charge nurse and asked how Ebbs was overnight. All reports were positive: she slept most of the night and was up around 7 and lucid and happy. 
“What time will she be discharged?” I asked. 
She’s not being discharged today, they said. 
Okay… what? I had just seen Dr. Maggee yesterday and he said… 
No one could tell me why. What about the results of her MRI? 
Umm… 
So yeah, that was my day. No doctor available to talk to, no one knew shit and everyone was blasé because, you know, “Jewish Holidays.”
Don’t misinterpret that. Pretty certain Dr. Maggee is of (East) Indian origin and probably not celebrating Rosh Hashannah. Or maybe he is. What do I know? But the guy told me the day before that she would be ready to be discharged Friday if they didn’t find anything to be concerned about on her MRI. And now it’s Friday… and this guy was AWOL. 
So no one could tell me about the results, or would tell me, and this guy wasn’t present and maybe went golfing. Maybe he went to Raymour & Flannigan, I have no idea, but he fucked off and Ebony is probably spending the weekend in the hospital now and no one could definitively say why. Oh, and I left the car in the hyper-inflation-based hospital garage because I figured it would be easier not to look for parking on Thursday and safer in the garage and yeah, sure, I’ll eat the $82 two-day fee times FOUR. While that bothered me, other things were pissing me off. 
I went from watching my beautiful girl smile and being happy to being completely fucking pissed off all day. Did I mention? After settling in to one of those “friend of patient” chairs in the room, I was inundated with HOSPITAL ADMINISTRATION PEOPLE WHO MIGHT BE AGENTS OF HYDRA with an intense push to get Ebbs into Physical/Behavioral Therapy when she’s discharged. Basically a two-week stay at Chez Cornell where they work with her on cognition and physical fitness. Pretty much I’m sold, but not one of these people could tell me if Dr. Maggee thought this was the way to go. I put my trust into this guy over the last two years and maybe a handful of office visits and all I want is to know is, is this is what he recommends. No answer. Zip, zero, nada. 
Fuck them, I want answers. My sleeplessness, physical and mental exhaustion notwithstanding: who the Hell are these people? Color me RATT, but lack of communication is the undoing of the health care industry. Fuck politics, we are living in a world among disinterested, bare-minimum morons who have ZERO ACCOUNTABILITY and aspire to nothing but fancy cars with MD plates, dinners at DANIEL and jerking off to The Robb Report.
So, yeah, I was steaming. 
My anger was abated briefly by a surprise visit from Ebony’s friend Bill. He’s been friends with her since before I ever met her and they’re thick-as-thieves metal aficionados. The two of them could run a doctoral program about heavy music. She was so happy to see him and I was so happy – and kinda blown away that he just showed up – Go Bill! -- I went to Au Bon Pain to get a coffee and give them a little time. Made sure to get a picture and later talked to Bill outside of the room as I walked him to the elevators. He noticed her condition and asked me if we went to the Danzig show last week. We had not. I gave my tix away because she’s not up for it and I didn’t want to leave her alone. Bill said she thought she’d gone to the show. 
After Bill left, I asked her about it to gauge her state of mind. She said we went to the show. I asked her how it was and, smiling, she said it was great. We’ve seen Danzig a bunch so maybe she was recalling another show, but, as heartbreaking as it was, she had a good memory that made her happy. And that made me happy. And, PS: Danzig got a great review for a show she never even saw. Advantage: Glenn. 
Meantime, I’m still not getting answers and now feeling harassed by the social workers asking me about putting her into this therapy but still no one is telling me what Maggee thinks or if he’ll continue or suspend her immunotherapy during the rehab and I am getting more and more pissed off. Did I mention? 
More heartbreak when I signed the proxy to make all decisions in the event Ebony cannot. Her mom is coming up and STAYING AT THE APARTMENT on Tuesday but Ebbs never wanted any part of that life in North Carolina and GAHD FABID (sorry, feeling Boston Bruins-y right now) things get worse, I don’t want them taking her down there for her last months. They’re “church-y” and she’s not. I won’t do it. So I signed the fucking thing and now, as her de facto husband, I am officially in charge of her care, legally, which is a fucking nightmare to consider and, sorry, Millennials, but: I. Can’t. Even. With. This. Right. Now. 
Ebbs slept most of the time I was there and around 6:30/7, another social worker, very Aidy Bryant, came in to ask about the cognitive therapy deal. I tried so hard to keep it together – I want Ebony to get the best treatment possible and if this means two more weeks at the hospital, so be it – but the badgering, lack of answers, lack of communication and conversational platitudes were wearing me down. So young Aidy Bryant went to “get someone” who could answer a few of my questions. 
That’s when things went off the rails and I lost it. 
All day long there was some chick clicking around in chunk high heels. I know this because most hospital employees have soft, noiseless footwear that are well-suited to hospital hallways. This chick kept clicking around. I would look out the door to see her go by. Turns out this chick is some big deal. Kinda. 
Her name is Michelle or Rochelle. Not sure. She came in all attitude and I asked her questions that I wanted to ask Dr. Maggee. Like, where the Hell is this guy? Why is Ebony not being discharged today? When will she be? What’s up with the MRI? IF we do this therapy thing do they guarantee results? What is their overall effectiveness? What are the hours of visitation? Do these people understand that she needs to moisturize daily with cocoa butter-based lotion? How can I be certain they will not mess with her hair? So many questions. 
Probably, I was abrasive. She gave me such a fucking high-falutin’ go-fuck-yourself response, I naturally escalated. I am a jerk, I know, but aren’t these health care professionals supposed to be thoughtful of patients and their family? 
“Where’s Dr. Maggee?” 
“He was here at 10 and did his rounds.”
“I’m the caregiver, why isn’t he able to be reached to answer my questions?”
“We were here at 10. You weren’t here.”
Um. What? 
“You weren’t here.”
HEY LADY. NO ONE FUCKING TOLD ME THAT I HAD TO BE HERE BECAUSE DR. MOREAU IS AN EARLY RISER.
“That’s not our problem. You should have been here. We talked to Ebony and explained everything. As for Dr. Maggee, he’ll be back maybe tomorrow…”
“You didn’t think to talk to the caregiver of a person who is suffering from LOSS OF COGNITIVE FUNCTION? My name and number is on the goddamn sheet at the nurses station. WHAT THE FUCK?” 
Things escalated and I almost called her all the bad words. Again, I’m a jerk, but – I did not. Ebony looked on and just shook her head. 
I tried to explain but all I got was her resume and why I need to listen to her. “I’m on the neuro team for the hospital. I don’t speak for Dr. Maggee. You have to talk to him.”
“You’re on the team? You’re on the team? Are you the neuro bench warmer?”
It just went on. 
So Heels clicked her way out and nothing got resolved. All I asked for was accountability and communication. I do my fucking job. I might have long hair and be (currently) overweight and regularly put John Frieda product in my hair to cover the stress-blond BUT I DO MY FUCKING JOB. You guys are supposed to do yours. Do your fucking job. COMMUNICATE. Fuck these people. 
So sometime around 8:30, this super, super, super-duper nice girl, Hapreet, came in and laid it all down. Hallelujah. She’s a resident, works for Maggee, knew almost everything that needed to be conveyed to me – the MRI indicated that there was nothing to be concerned about (no seizures, no stroke, no damage) – and promised to follow up on questions she could not answer. 
That took 15 minutes. 
It was almost 9 and I had been there for 10 hours, stewing. 
Later, I said goodnight to Ebony, who was ready to sleep like an angel. I went to the cafeteria in the basement and bought her a piece of chocolate cake and two more bags of BBQ chips. Put ‘em in a bag and wrote her name on it so when she gets up she can have all the delights she wants. Kissed her goodnight. She told me not to forget my “Jet Pack” – she meant backpack – and I left on a high note, kinda teary-eyed, kind laughing. Yeah. My Jet Pack. 
Took forever to get home and I tried to sleep but nothing…
Ebony’s Mom is coming Tuesday. Staying here. I guess I should hide all of her sick heels and Judas Priest cds. Did I mention? EBONY’S MOM IS COMING ON TUESDAY. 
Hate to be a downer. Let’s end on a high note, shall we? 
The Danzig show was fucking awesome and Ebony loved it! 
\m/ __ (><) __ \m/

Back at the hospital. Apparently Ebony took a spill last night trying to get out of bed after I left. She's okay, but they put pads along the inside rails of her bed, so when I arrived I was worried . Talked to the doctors and attending nurses and it seems she was trying to get to the bathroom. Maggee said he's concerned about her cognition and the EKG seems to indicate she is free from any significant brain damage but they are continuing to run it. 
I asked him about long term, because it has been weighing heavily on my mind, and he was pretty frank but reluctant to make a call. "It's not easily defined. If this Immunotherapy works, then the sky's the limit. If not... depending on growth... maybe five, maybe ten." Curious that he didn't say "years," but these doctors can be so brisk. As Sara Sexton used to say back in the 80s hardcore days at The Blue Pelican, "They abbreev occayzsh." 
(Whatever happened to Sara Sexton I wonder?)
I called out of work tonight. Amazing how nice and understanding people can be, even when you don't really know them. My boss, Andrea, said, "Hey, you work for The Family Network." She said it like I was in the Mafia, so naturally that made me smile. Then I started wondering: if I am in the ABC Mafia, who is David Muir? Is he Michael Corleone, or -- and this may be a stretch -- Johnny Fontaine? Or maybe he's Jennifer Melfi. I can't decide, but I am leaning towards Johnny Fontaine.
I am, of course, going to be Richard Harris in "Patriot Games."
I've had about four hours of sleep and am kinda wrecked from the whole experience this week. Ebony is here, chillin' and watching one of the Celebrity Yelling Judge shows that she loves. Her new roommate has some friends over, but I can't see them behind the curtain. There are three ladies, all of them SUPER UWS LIBERALS and possibly Librarians, and they are incredibly entertaining. One of them sounds EXACTLY like Jane Fonda, and they are not at all happy with the current administration. They do like, well, love, lasagna. It's like listening to a politically-charged cooking show. Does anyone else use bacon in their lasagna and top it with crumbled Parmesan? I am intrigued.
I have to make some time to Like all the comments but keep getting distracted. Thanks, Pete Chramiec, btw: I DID trick Ebony into dating me. Been ten years and she still doesn't know my high school (yearbook) nickname. She grew up in Queens Village, next to Hollis, and went to high school with 50 Cent, but is. It into rap. Not sure she would appreciate or approve. Or believe it really. She is so metal -- metal as fuck -- that it might turn her off and I don't want to add to her burden. 
I think she's asleep now. Going to sign off and stretch my legs. The Librarians are taking about JB Priestly. The Jamaican orderlies are in the hallway talking about someone's dog (they don't like) and I feel relaxed for the first time in a while. I hope it lasts. Well, it will last until I have to get back on the LIE with the inconsiderate morons...
As I was typing this, one of the Hydra agents from Weill Cornell administration pulled me away to discuss possible in-patient cognitive therapy following Ebony's discharge. I keep forgetting that this treatment is part of a clinical trial/study and not common practice. I suppose that's encouraging in that they are paying very close attention to her, but it also feels like they're freewheel burning and that thought gives me pause. 
Anyway. Signing off.

So...
Spent the day waiting in an Emergency Department where the world of the UES was falling apart. No gun shot wounds but a lot of needy Sutton Place morons. 

Ebony's doctor came by around Noon. Weill Cornell is a teaching college, so Dr Maggee had these beight faces with him, along with results of Ebony's MRI. I am certain they were like, "Who the Hell is this guy?"

The swelling in her brain may or may not be related to her tumor, however, there was some evidence the swelling had subsided. So, good news. He is ordering the continuation of her Immunotherapy. More steroids, higher dose, more Opdivo, in a couple of weeks. Nevertheless, bad news: the tumor remains.

He ordered an EKG to run tests to see if there is any brain damage and that continues through Thursday morning. 

Ebbs was sleeping most of Tuesday night into Wednesday and woke up around 5 a.m. All that time I was whining and keening here. She was lucid and knew what was going on. Also, hungry. Earlier, I had gotten her a turkey sand and some BBQ chips. She likes BBQ chips. Well, she likes ANY potato chips. So when she said she was hungry, I gave them to her and she wolfed them down, totally aware of what was going on. I was elated.

Two hours later, after more RNs and meds and a new IV of steroids, she went back to sleep and I went wandering for more coffee. Mostly, I had to get away from the sociopathic witch who shared a room with Ebony. I promise I will write about her one day. When she got up, though, she was back to being disoriented. 

Around 4, Ebony was moved to a room across the corridor, to share with a Portuguese family. They were super nice. The mother, from Portugal, and her son and daughter taking care of her were all beat. The Mom was having spells and could not stand up. Ebbs just slept. The Portuguese children are my age, btw. They seemed as overwhelmed as I feel. They were so nice, though, and kept offering help. Amazing.

After all of my crying and stressing and worrying, around Noon, Maggee came in with his team and said what he said. Ebony was going to be moved upstairs to Neurology to get more attention. 

That took FIVE HOURS and me calling out on another day of work. < $ But I am grateful that I have such cool support. 

So now I am still falling apart , as I mentioned. Ebony and I are both only children. Both from single-parent working Moms. Neither of us has any local support to lean on. It helps just to vent and I hope you all understand this need of mine. All of my bitching here elicited such an outpouring I cannot begin to thank everyone -- everyone. But bitching is easier than accepting help and sometimes you just need to vent and I thank you all -- again.

Out of NOWHERE an old friend - Angus McIndoe -- just texted and said, "I will be there in about an hour." WTF?

So, yeah. Angus just showed up to be a friend and offer encouragement and support and provide calm in my Sargasso Sea. PS, he looks great. I need to do whatever it is he is doing. 

No matter what --- EVIDENTLY* -- I cannot thank him enough.
*(See what I did there, Angus?)

Meantime, Ebbs got transferred to Neurology and got a sweet bed around 9 p.m. We had talked that once she got sorted out , I would go home and try to sleep after maybe 40 hours of no sleep. At 11:30 this happened and I said, " Boa Sorte" to our Portuguese cell mates and went upstairs. Once Ebbs was okay, I turned towards home, knowing I would be back -- and will back by Noon-ish. 

There is more -- WAY MORE -- to this, but after all my neurotic anxieties, I thought I should update my status and EBONY's. We are not out of the woods and have more adversity to face. I just love her and after 10 years, still feel the same love for her. But for now, I need to sleep because I have to go back to the hospital and then to work. 

Ebony, when I left her, was peaceful and knew what was going on. I smuggled in some more of those little bags of chips for her and will be back with more. She loves -- LOVES -- chips. Or crisps if you are reading in the U.K. Did I mention? Okay, sorry. 

Now, I have to go to bed. I am still kind of a mess - I fell apart crying on the LIE because people around here don't use their blinkers, and it makes me crazy. But I listened to Pat Benetar all the way home, for Ebony. Not that she loves Benetar, but because "Shadows of the Night" is such a great song. More Benetar, I say. 

Spent fully 45 + minutes looking for parking but found a spot -- out front -- in the end because Jewish High Holidays are upon us and guess what? Alt Side is suspended! Hooray!! Chag Sameach!! 

Thank you for all of your comments and prayers and good thoughts: I needed them more than I knew. I will post more as I can. 

PS, thanks Gus.
They have a phone charging station with adapters for all phones. I keep returning to get up to 50% because to get to 100% would take a while and we are in the Emergency Department and there's been a lot of activity. I notice there are a lot of older adults who come in for whatever and seem to truly enjoy the experience of talking to the triage nurse or doctors on duty. This makes me sad, but at least they're not in for gunshot wounds: just stomach distress and -- swear to God -- a man who thinks he drank a bad Merlot. Didn't get the whole story but it was not Paul Giamatti. 
Weill Cornell is pretty big, since it's not just a hospital but part of the Cornell medical campus -- a teaching hospital. The building around the lobby at the 68th St entrance is built into and around an old church. Pretty cool design, but within part of the church structure is an Au Bon Pain. Going to grab another coffee in a few but I was thinking that if people who went to that church way back when somehow came back to life and returned to New York City to see that, they'd swear that Manhattan was over -- ruined forever by corporate greed and chain stores. They'd remember when people used to pee in the streets and things were edgy and cool, like top hats and gothic cathedrals on the UES. 
I am going to get another coffee but I think I am going to start trying to see how many different bathroom urinals I can christen while I am here. (There's a lot.)

Thanks, everyone. I'm just sitting here with her in the Emergency Dept. It's a busy night on the UES, as the hospital is at capacity. Ebbs is lucky to have a room. (Except for her roommate, but I will probably bitch about that later.) They have a lot of people on beds out in the hall, lined up like they're at a drive thru window. I remember this happened to Ebony once, at North Shore LIJ. That was the week she was first diagnosed. I hope these people fare better. They came to take some more blood. I figured she'd sleep right through it and she did. I may take a w talk, find some coffee. 

September 20 at 12:33amNew York
I am at the hospital with Ebony tonight. We came in at 11:30 a.m., already late for her appointment for Immunotherapy, but complications and some concern about possible swelling in her brain got her admitted. This is third time in five years at three different hospitals that I am spending the night, albeit wide awake in a chair, but I don't want her waking up disoriented. The doctors say the tumor has progressed and rushed an MRI to determine if there is swelling from the radiation or the cancer. We hope it's the former. My heart is in my mouth,