Tuesday, October 17, 2017

Secret Oktober: FB posts I haven't posted

“You are now leaving the City of Dreams”

There’s a billboard on the way to the L.I.E. by some artist named Peter Tunney. I see it when I’m coming home in a cab after the 59th Street Bridge. It bothers me because I think it’s pretty insulting to anyone living outside of NYC. Maybe it’s sarcasm but I’m not feeling it tonight. 
Earlier today I was up and working on filling out Social Security forms for Ebony. Her insurance does not cover home care for more than a few hours a month, if that. I’m told that SS/Medicaid makes allowances for this but I have to fill it out as her significant other/caregiver. Not an easy task, as I have to come up with all manner of documents I have no idea how to locate. Tax returns for the last two years that Ebony is unable to recall. Possibly online, but she doesn’t know her passwords and I have to work to find alternative solutions.
One of the questions asked wrecked me. I wrote to her doctor, well his intern who is pretty good at emailing. I said that I was uncertain how to answer this question: 

Have you been diagnosed with any specific condition that is expected to end in death?
( )Yes
( )No

Ebony has been home since Wednesday afternoon. Her mother is here and we are learning how to take care of her, coping, making adjustments. The apartment is not well-equipped to handle a wheelchair, a walker and a commode but we are working it out. I want to maintain and protect Ebony’s dignity, but the tumor, since the immunotherapy began, has caused incontinence. She is blissfully unaware of it, and we’ve been given disposable adult diapers by the hospital, and a friend of her mother’s had boxes of them from a relative who no longer requires them. 
Our day begins by getting up, having coffee (her mother prefers tea) and letting Ebony wake up as naturally as possible. She sleeps like a cat so sometimes we’ll have to gently wake her and then I take her to the bathroom to get her cleaned up and changed. This takes a bit as her legs are weak and standing is difficult without help. I help her get up, get her to the wheelchair and into the bathroom. There was a time when that would have freaked me out, the thought of it, but I’m not bothered about it, not even slightly. She has given me the greatest 10 years of my life, is this really such a sacrifice or an ordeal? It isn’t. I know that sometimes she’s troubled by it, I can see it in her eyes. She doesn’t say it, but I know. I reassure her constantly that I love her and nothing can break that and I will take care of her. I tell her over and over again how much I love her and how beautiful she is. I clean her up and I’m happy to do it because I want her in my life and if this is how I get to have her, so be it. I make sure to moisturize with her special lotion and fasten the tabs of the diaper and pull on some new threads for the day and get her back to her wheelchair.
If her mother hasn’t started in the kitchen, I make breakfast. I have bought a ton of food and in the six years we’ve been in the apartment, the refrigerator has never been so full. I’m fussy about certain things and friends of mine who know me in Newport will recognize how Dan Puerini has corrupted me for the better. Everything has its place; certain items, Pelligrino, Coca Cola, have to be rotated, most recent purchases in the back. Nothing gets dropped on the floor. I’m careful as I move food and particular about storing leftovers. Well, we all are, but Dan Puerini in my head makes me try harder. The only thing I don’t do is date the leftover because they never last more than a day. 
Her mother isn’t much of a cook. I don’t fault her for this. I think it’s just that I’m a little over-the-top and want Ebony to have the best I can create for her. So far I’ve made a pretty outstanding, though basic, meatloaf. Half ground turkey, half ground beef and vertically topped with thick center cut bacon in a 13 x 9 casserole dish. Thursday I made pesto. Friday night I made chicken piccata, sub artichokes and spinach for capers. Made rotini and then put it in a bowl and spooned in pesto. Boom, a nice side. Spinach is big here and either it’s in a salad or sautéed with a little oil, garlic and lemon. Today, before I left for work, it was meatloaf (leftovers, but heated up nicely) with gravy and I made mashed potatoes. I’m very particular about them. I made 10 pounds, peeled and chopped each little potato, boiled and then drained and mixed with 4 pounds of butter, half Land o Lakes and half Kerry Irish. No milk. (Why milk when you have butter?) A little salt and pepper. I bought a loaf of panella from the bakery and warmed about a third, then sautéed spinach and tomatoes as a side. Sort of a traditional New England winter meal with a slight Italian accent. Up yours, Epicurious. 
Of course there’s no wine. I’m not sure if Ebony can have it and with her mother here, am not going to bring any into the apartment. So it’s Pelligrino but I know Ebony would like some as much as I would. 
That’s a thing, I think, for her mother. And that’s part of our disconnect. There’s a disconnect. We don’t know each other and have only spent time together when she’s visited because Ebony was in the hospital. Her mother is sweet, but very, very quiet and very timid and nothing AT ALL like Ebony. She kind of like a Ficus. Also, she’s pretty into her church. Her whole family is down in Charlotte and they’re what I would call “churchy.” Ebony never was and that’s part of her disconnect with her family. I’m not… I don’t know what I can really say. I was raised Catholic, went to Catholic school, attended my grandmother’s Episcopal church and sang in the choir there for years. I don’t know what I believe but these Southern guys in their Botany 500 suits preaching… I don’t know about that either. I was raised a certain way so, to me, if the individual discussing religion is not burdened by pretentiously austere and needlessly heavy vestments, I can’t even fake getting behind it. I feel the same way about rockstars. I want my rockstars to look like they give a damn about what they’re doing. A little style, please. Bowie. Bob Marley. David Lee Roth. Johnny Rotten. Lemmy. Prince. Michael Jackson. Adam Ant. Michael Hutchence. Al Jourgensen. Zodiac Mindwarp. Danzig. Dave Gahan. Zakk Wylde. Ian Astbury. Come to think of it, every artistic interpretation of Jesus that I’ve ever encountered, the guy has long hair. White, black, Latin, whatever: he had long hair. Never seen one guy in the Catholic church – priests, brothers, monks -- with long hair. Not one. But I digress… 
Her mother follows something I think called Kingdom Ministries. I’m reluctant to tell her the only Ministry I care about – and I can speak for Ebony here, too -- is Uncle Al. Wouldn’t go over so well, but I’m not out to offend or make enemies or alienate her from Ebony in her time of need. But today, something came up. 
While we were eating, the doorbell rang. The super or one of his guys dropped off a package for Ebony that came in the mail. I brought it to Ebony who looked at it strangely, as she does a lot of things now. She opened the package and inside was a coloring book, a pack of rather nice-looking colored pencils with a sharpener, and a book, “Praying Through Cancer.” The coloring book was something like, “Drawing with God” and featured pivotal scenes from the Bible to color in. Noah’s Ark, stuff like that. I only glanced at it. Ebony made a face and just handed it to her mother and went back to her meatloaf. Telling. 
I think her aunt sent it. There was no card, but I can guess. She texts me every day with scripture quotes or video links to gospel stuff. Black gospel stuff, not like the Mormon Tabernacle. Like, real Jesus-y stuff. I don’t know what to say and just type back, “Thank you.” But it’s not me, and it’s not Ebony. I don’t know how to tell any of them, so I kinda just let is slide, but it drives me a little nuts. The first concert I ever saw with Ebony was an extreme metal band from Greece called Rotting Christ, one of her favorites. Pretty cool band, too, but… you know. 
They’re doing it for themselves, I know. We’re all in pain right now and that’s their self-medication. But it’s a disconnect for Ebony and I and even in her current state, it’s not her thing. And I don’t know what to say. It’s such a touchy subject but I feel like they’re subjecting Ebony to this when she’s vulnerable and I don’t think that’s right. If you love someone, you love someone for who they are, not who you want them to be. Seem un-Christian-y when you think about it. When I think about it. I do know that if Jesus did show up right now, I’d tell him, “Hey, dude, fix Ebony and I’ll go to church every Sunday.” I’d also probably point to the case of Pelligrino on the floor outside the kitchen threshold and say, “Amarone, please.” (I’m probably going to Hell for that.)
The doctor’s resident finally wrote me back about the question I emailed and said, “Unfortunately the answer is yes. Please feel free to reach out with other questions or concerns.”
Other questions and concerns? I have only ONE concern. 
I couldn’t stop kissing Ebony before I left. Sometimes she’s just out of it and her eyes tell me everything but she really likes to kiss and always smiles when we do. She will kiss me back and then bow her forehead to mine and then I kiss her again and she kisses back and smiles. So I kiss her a lot. It makes me tear up and today I was a fucking mess and kept saying that I need to take my Mucinex but what I really need is a Vicodin or Zoloft or whatever the preferred contemporary mood elevator is. What I really, really need – what I want -- is more time. 
I hate leaving her and now I am so addled about doing it I start falling apart walking down the street. I keep trying to stay positive. This weekend we had fun. Her mother went out for a couple of hours: she’s found the Target in Forest Hills, so yay. While Ebony sat in her chair, I played her the latest videos on Blabbermouth: Moonspell, Beast In Black, the new Helloween. I feel like I’ve really come around to European Power Metal, something I was never crazy about. She likes a lot of it. I dig the Helloween tune, silly as it is. “Pumpkins United.” I’m not even going to explain, but I dig those crazy Germans and Ebony said, “It’s actually really good.” So there, critics. I also played her the new Powerman 5000, whom I love but she… not so much. She dug it, though. The song, “Cult Leader,” is catchy as fuck and I highly recommend to anyone needing a “jump up and down song.” Powerman 5000 is the band fronted by Spider One, younger brother of Rob Zombie, who looks like nu-metal Billy Idol. His lyrics are far superior to Rob’s. I love Rob, but after a while… I don’t know. I mean, I get it: you read Psychotronic and Fangoria and love all that shit. Spider, though: different animal. Some of his songs are such scathing indictments of American culture it’s a wonder his fans don’t throw rocks when he plays. “Miss America,” “A is for Apathy,” “This Is How To Be Human”…. Maybe I give him too much credit, but I dig it and I need to dig stuff right now because I need the distraction. More importantly, Ebony was paying attention and reacting and I want to do more of this… let’s call it “music therapy.” Thing is: hard to even play Judas Priest when Mama Church is hanging around. 
I was at work tonight recapping “Dancing with the Stars” and feeling like shit. I’m just trying to keep it together. It’s so weird, what I do. Ebony used to make fun of it, in a good way. “The most important show in television!” That was her line, not mine, but I still say it with glee. That show is like watching a glitter-filled Party City tractor-trailer careen into a Long Island wedding. I can’t stand it, and yet it’s one of ABC’s biggest properties and I have to take it seriously as it’s part of my job as an entertainment writer. They are now in their 25th season, if that makes sense. Washed-up celebs gather to hang on to some fame and keep their names out there and a second unit team chronicles their backstory so come airtime, all of their heartbreaking tales are splayed across the screen on cue for everyone to weep to. I hate it, I fucking hate it. And then I get sucked into it and I hate myself. It’s not even about the celebs, though: it’s about the judges. They reflect the yin/yang of the audience. It’s also a popularity contest in the end, because interactive online voting decides the fates of yesterday’s heroes. But the judges… it’s all about them. They bring the gravitas, if that’s not too grand to write. There’s Len Goodman, who sounds like Dudley Moore as Arthur when he's smashed and is a harsh critic; there’s Carrie Ann Inaba, the All-American Fly Girl from In Living Color, who is always breathlessly modifying her superlatives with ten more superlatives, and of course, the rockstar, Bruno Tonioli -- whom I know as a background dancer in Elton John's "I'm Still Standing" video and the choreographer for Bananarama’s “Venus” and nothing else -- is either a manic stereotype of an Italian sexual predator or used car salesman. And I'm not sure if they have used cars in Italy. But he’s incredibly entertaining and together they’re… well, in the end, I have to admit, more entertaining than not and really good at what they do. 
But I really couldn’t concentrate on any of it tonight. I’d get distracted for a bit and then think of Ebony. I used to text her but now she doesn’t look at her phone and I’m not sure she’s 100% about how to use it. It depends on how tired she is, but I miss texting her so much it aches.
Today I’m making chicken soup. Good for the soul, I hear. Plus, I can make a ton and freeze it for later. Goes well with the panella, too. I’ll try to date the stuff I freeze, because: Dan Puerini would. Will make a nice meal, not too heavy. Ebony likes my chicken soup. Could use some wine, though, but Pelligrino will do. For now. Have to keep my head clear anyway, there’s so much to do. 
Ebony has an MRI on Wednesday and then a week later, a consultation with her doctor. I’m hoping for good news, but expecting the worst and I can’t shake it. 
It hurts to think about. I don’t care, though. I’d suffer anything to spend more time with Ebony and to make her life better as much as I can for as long as I can.
That’s what love is all about, isn’t it? Am I crazy? Oui. Je suis fou. 
I have to go to bed now, I think. I need to sleep a little and dream before the jackhammers start up again (there is construction going on around my building and it started Monday morning at 7:30). In my dreams, right here in Queens, everything is going to be all right. 
Fuck Peter Tunney and his stupid sign.



Hello, darkness, my old friend… 
I haven’t felt much like socializing. It’s not that I don’t want to see my friends, it’s just difficult for me to see my friends and have to tell them all the horrible details and see that look that comes over their faces when they realize how desperate I must seem and how hopeless things are. And how many times can I say, “We’re trying to stay optimistic and keep a good thought” before I stop believing it? 
I’m on the train right now, passing through southeastern Connecticut on my way back to The City. I brought the car up after work Friday morning. Ebony won’t be driving anytime soon and I don’t want to keep it and have to move it and spend hours looking for a place to park. More importantly, Mom’s going to talk to the dealer about selling it so there will be a little financial relief, if they give her a decent price for it. I love that car, but we don’t need it and we can always get another car, right? 
Anyway, I got into Newport around 6 a.m., went to bed and got up around Noon. The other woman in my life, my Mother, has her own cognitive impairment that I have been dealing with for as long as I’ve been alive. So whatever I have to face with Ebony, I’m pretty well prepared. 
“I was talking to Sharon the other day and Aisling had her mastectomy. She was at – not the hospital Ebony is at, but it’s on the East Side. Isn’t Ebony’s hospital on the East Side? I just can’t remember the name. What are some hospitals on the East Side? It’s not Memorial Sloan Kettering, I know that. Is there a boutique hospital? Sharon said they have prime rib for dinner for the patients and it just sounds divine. But Aisling sounds like she’s doing fine, which made me so happy to hear. It’s just so sad because it seems like everyone has cancer these days. I just don’t remember a time when so many people had cancer. Maybe it’s because we’re able to diagnose it sooner. You know Will, from next door? His best friend just found out he has cancer… what’s the matter? Why are you looking at me like that?
“Mom… I asked you if you want me to take you grocery shopping.”
Needless to say, this meant a trip to Shaw’s, which my mother favors because it’s in the Aquidneck Shopping Center, where the Sears and Child World used to be, back when The Christmas Tree Shoppe was Stop & Shop and CVS was Liggett’s and I would get my hair cut at by Mr. DeCotis down in the corner where they used to put the reindeer at Christmas. (Every trip home with Mom is a nostalgia trip.) 
Shaw’s is pretty “meh” as a grocery store. They’re no Almacs and they’ll never be Clement’s. Like, good luck finding fresh rosemary. Also, they have 20 registers and check out lanes and never more than 4 or 5 open. Plus one of the guys who works there is a total ding-dong who scans one item at a time like he has developmental issues, but I think he’s just doing this out of spite and three out of four times, I end up in his lane. No matter what, going to Shaw’s is a disappointing time-suck but Mom likes it because it’s familiar and she can take “the back way” down High Street and avoid West Main Road and talk about things that used to be there but are now other things she’s not interested in. 
Earlier, while I was sleeping, Mom made a trip to Wal-Mart to buy some bulk items and the physical exertion took a toll on her. It was starting to show by the afternoon and became apparent at Shaw’s. As far as I was concerned, we were on a Walking Dead run for supplies: in, out, avoid the Walkers and we’re gone. I’m only here for 24 hours. But Mom was punchy and distracted by the pretty things. Trying to get her to focus when she’s like this is like training a Doberman. “Mom! MOM!” She’s leaning on the cart for support and huffing like she’s about to have an asthma attack and people around are looking at her with concern. Of course, they’re looking at me because long hair and tattoos in my hometown equals irresponsible derelict who should be shunned. It’s strange to me that a town which was settled and founded as a haven from religious persecution is in fact, in the 21st Century, so Puritanical. (If there is ever a movie made about my life, this is the part where to cue up XTC’s “Respectable Street.”) I try to ignore it because if you have to stare, your life can’t be that interesting anyway. 
So Mom is careening all over the aisles with her shopping cart like a cat chasing a laser beam. “What about pickles? Do you want some pickles? You love pickles. I’ll get some pickles.” 
“Not what we came for, Mom: focus.”
This goes on. Mom is dilly-dallying and finally I break. “Maybe I’ll make some pesto. I’ll make a little rotini with pesto and we can have that as a little side dish for dinner.” So off I go looking for pine nuts and walnuts (because pine nuts are fucking expensive and walnuts are a practical less-expensive, though still pricey, substitute). 
I can’t find the pine nuts. I found the walnuts. But I had to ask about the pine nuts and this is my every experience at Shaw’s:
“Can you tell me where to find pine nuts?”
“Pine nuts?”
“Pignoli… they’re the little… they come in a little bag…”
“Oh, they’re in the chips aisle.”
No they’re not. It’s only Columbus Day Weekend: why would they have anything Italian? But, hey: we got mad pumpkins, yo! 
And... scene. 
I don’t even know why I bother to share this with Mom but it’s all a moot point anyway when she informs me that the blender broke and she had to throw it out. 
Finally, when we have gotten too much and would have been already been killed by zombies at this point, it’s time to check out. There’s four lanes open on a Friday afternoon before a three day weekend and a lot pissed-off people are queued up as we approach… 
And then I see him. HIM. THAT GUY. He’s put on weight and his hair is longer -- now he’s rocking a full skullett – but he’s still working there, moving one item at a time across the scanner like he’s playing Operation. Slowly… slowly… 
There’s one cart in his lane. One cart. I’m trying to make up my mind: do I do this and make myself crazy, or get in one of the other lanes and just suck it up? 
He looks up and he sees me. AND HE SMILES AT ME, grinning like Jack Nicholson. He will check us out, he nods, one item at a time. He will chat with my mother and ask over-familiar questions and my mother will think he’s so sweet and keep talking and when he’s checked every last item there will be a problem that will require a manager and that will take even more time and he’ll keep talking and bagging things in slow motion and we will never ever get out of there and I will be forever trapped in this nightmare. 
I look back at him, and he mouths, “Welcome to Hell.” 
I get in the other lane and of course there’s a problem. The woman in front of us is hovering over the credit card reader and just randomly pushing buttons and the guy keeps having to override and telling her “you have to do it again.” It’s a credit card reader and she’s laboring over it like she’s trying to hack Langley and I WILL NEVER GET OUT OF THIS STORE.
Mom looks at Skullett, who’s glaring at us, and says, “We should have gotten into that lane.”
This is, of course, all a distraction from panic. 
We got all the bad news this week. Ebony was moved to rehab last week and has been getting physical, behaviorial and occupational therapy every day except Sunday. She’s been off her feet for a month now and she’s having difficulty walking. It’s actually hard for her to get up. Mentally… when I saw her Thursday, she couldn’t remember my name. She kissed me and squeezed my hand and I think it hurt her more than it did me, but this is part of the problem. She knows what she wants to say but has difficulty articulating it. She is going to need 24-hour care, which means I have to become a physical therapist, a speech therapist and Nurse’s Assistant in a matter of days. I already started training Thursday afternoon. They showed me how to help Ebony in and out of the tub, oh and PS – I have to buy a wheelchair, walker and tub chair/bench thing. I return for more in-home-care-training on Monday and Tuesday. 
They are going to discharge her on Wednesday. And then we have to find a Jamaican nurse (because: New York) to come in when I go to work. Her Mother is still here and frankly, I have no idea when she plans to leave, but if her medical doesn’t cover it and we have to go through an agency, they charge on average 25 buck an hour and she’ll need someone in for the roughly 8 hours I’m out and at work. Probably more if the MTA doesn’t get its shit together. But add it all up and that’s $4000. a month for home care. And people want to get rid of Obamacare? I want full socialized medicine, but good luck, Buddy. I want to go to Finland or Sweden where this would not even be an issue and I could focus on spending all my free time with Ebony and making her happy instead of stressing the fuck out. Which is pretty much where I’m at. 
I need a raise. Or a new job. Or a second job. Maybe three jobs. Or I have to win the Lottery. I need to write a bestseller, but I’m afraid no one would want to publish anything of mine and what do I have to say, anyway? Life sucks? Yeah, that’ll be a top pick on Kindle. And it’s like I hate my job, either. It just doesn’t pay me enough. I can’t write “The Devil Watches ABC” because who wants to read about someone having a cool job and nice boss who’s really understanding when it comes to my home situation? 
The though occurred to me that I would be happy as a contract killer. I don’t really know how to get into that, though. I wouldn’t want to just kill indiscriminately for money. Already I’m wrestling with morality issues on this. Like, if your spouse cheated on you, I wouldn’t take that contract because there are lawyers who can do more damage; but if someone cut you off in traffic, without using their blinker? Yeah, I’d kill that person. For a million dollars. This way, I could make money, help people and alleviate congestion on our highways and I could feel good about it and my conscience would be clean.
But in reality, I have no idea what to do next and am kinda freaking out. I just love Ebony like crazy and want her to be well: I’ll do whatever it takes to take care of her. But the thing that really scares me is that there won’t be a “return” to anything; that she’s not going to be “back to normal,” at least not anytime soon. Now it’s about going forward with this new… situation. 
I’m going to be fucking 50 next year. I guess this is my mid-life crisis? I thought I was supposed to get a Porsche or a vintage muscle car. Maybe I’ll just put drag pipes on Ebony’s wheelchair and paint flames on the side. With a bumper sticker that reads, “MY OTHER CAR IS YOUR MOM!”
They just announced New York City. Back to the hospital and back to reality..


Mick Stingley added 3 new photos.
Some encouraging news. She's not out of the woods yet -- far from it -- but Ebony has been moved into the rehab facility for physical and cognitive therapy at Weill Cornell/New York Presbyterian, on the 17th floor, no less. Apparently it has been recognized for its achievement in the "goth percentile." That should be interesting as we head into October. 
Movin' on up like George and Weezy...

Tuesday, September 26, 2017

Monday

I’m a bad Jew.

I should have gone to Med School, or Law School so I wouldn’t feel so helpless and powerless. Probably I wouldn’t qualify for Med School and what’s the dif, anyway: these doctors can’t make Ebony’s cancer go away. There’s no cure. At least if I was a lawyer maybe I could intimidate the doctors with the threat of being sued by the angriest Irish malpractice attorney in the Great State of New York. I’d be recognizable, too, because of my annoying commercials.

I’d put on a strong New Yawk accent to go with my tailored suits and French cuffs.

“Are yoo tyuh-d of visiting yoouh loved ones in the hospital and being ignored by slippery doctors who spend more time playing golf than attending to patients? I’m Mick Stingley, and I sue doctors. I can a get yoo a lotta money, too. For whatever. ‘Cuz that’s what I do. Call me at 1-800- FUCK-YOU.”

Who I am kidding, though? If I was a lawyer, I’d more likely end up as an attorney for the mob, just for the dinners.

I finally heard from the doctor on Saturday. He called me. Be careful what you wish for.

It seems that Ebony’s tumor is worse than I was really aware of. They found recurrence over the summer and started her back on Chemo. She was going in for bloodwork and MRIs pretty regularly, without me, due to my schedule at ABC.  She was having Chemo and driving herself home, and never let on.

The doctor said that they tried two different Chemo treatments but weren’t seeing results. He tried to get into some clinical trials, but the nature of the tumor is such that there wasn’t a trial to accommodate her. So, when presented with Immunotherapy, a treatment not proven for brain tumors but that they were excited about, she went for it.

And now here we are.

I didn’t see Ebony on Sunday. I feel incredibly guilty about this. With her mother coming Wednesday, I had to clean the apartment and needed at least a day to do so. I was up late Saturday and slept in, at last; but then I had to toss this place like a crime scene and I’m still not done. Took care of the common areas, living room with the TV and sofa bed, kitchen, bathroom and hallway. Bought more toilet paper, paper towels, Windex. Picked up a copy of the latest Essence to put on the coffee table with the latest Vanity Fair, which I subscribe to. Tried to make it like a hotel as much as I could. Put out the menus for the good Chinese restaurant and the great pizza place. I just want her Mom to be comfortable and I really don’t know her, so I’m winging it.

I still have to do laundry and lots of it. Sheets, towels, the little Williams-Sonoma hand towels I have in the kitchen that my Mom got us.

I had to work today. I’ve been out for almost a week. I’m crying wreck of a person but I can’t afford to miss another day. Just the shit you end up spending money on when you’re back and forth to the hospital, and when you’re there, adds up.

I know the two guys I work with have been putting in extra hours and I wanted to thank them in some way beyond just words. Usually about an hour in, they get hungry and grab some dinner or have it delivered to ABC. I thought I’d get some sandwiches from Fine & Schapiro on 72nd, bring them dinner on my way in. I called over and asked if they do take out and if they take credit cards. The guy was predictably blasé.

“Of course, of course.”

How much lead time do you need when I call with the order, I asked.

“Maybe fifteen, maybe twenty minutes. Depends what you order.”

I laid out my plan. I just need everything to be bagged separately so I can hand them out.

“Oh, sure. What were you thinking of ordering? If it’s sandwiches, that’s pretty fast, but bigger orders for hot plates will take longer.”

No, I said, “I was thinking pastrami sandwiches, pickles, cole slaw, maybe a couple of small orders of chicken soup. Chips I got. But maybe, I don’t know, cream sodas or I those celery sodas? Not sure which would be better.”

“Well you can’t go wrong with either. The Cel-Ray is maybe a little more Jewish.” He laughed.

“Well, the Cel-Ray, then. So I call that in maybe half an hour before I go to work and I can pick ‘em up?”

“Sure. You know, we deliver, too. We’re on GrubHub.”

Didn’t know that. I can do that. “I might do that if I’m running late.”

“You’re a good Jew.”

Pretty sure he was laughing when he hung up. Funny.

I went to see Ebony. I went shuffling down to the subway listening to the Saturday Night Fever soundtrack because I needed something upbeat and different. It just depressed me. I should have thought about it. Hearing songs like “Stayin’ Alive,” “Night Fever,” “How Deep Is Your Love,” “More Than A Woman” and “If I Can’t Have You” are not exactly the songs you want to hear to take your mind off of worrying about the woman you love being treated for cancer in the hospital. I should have listened to Motorhead.

I got to “Disco Inferno” when I reached Lex and jumped in a cab and headed to Weill Cornell. That song has been stuck in my ever since.

Ebony’s eyes lit up when she saw me and you’d think I was the Red Cross arriving at the refugee camp. Heartbreaking, but she reached up her arms to hug me from the bed. She was so weak, I could tell it was difficult for her, but I leaned in and kissed her and hugged her so tightly. I told myself I was not going to cry around her because I don’t want to upset her but I was fighting back tears.

She looked beautiful, in spite of everything. I had stopped at the little shop in the lobby and got her some magazines. Ebony, Elle, Marie Claire, The New Yorker. Funny, except the New Yorker, all of the covers featured black people. Total coincidence, but they have pretty pictures for her to look at since she’s not really up to reading, and I added The New Yorker because I don’t want anyone coming in the room judging her. She’s getting a new roommate today and I think it’s important to mark your territory, first impressions and all. No idea who’s coming in, but if it’s another one of these Upper East Side Stage 3 dowagers and their overly annoying friends and family, if they do any spying and see the mags, they can harrumph quietly and say, “Well, she reads the New Yorker.” Oh? Does she? Well then.

I think all of this time I’ve been spending at the hospital has made me suspicious of everyone and quick to judge. Not suspicious like, “They’re all Lizard People!” But cautious. They told me over the weekend that they want to get Ebony into Acute Care Rehab for physical and behavioral therapy. They came at me like English seagulls. Just a little too hot to get me to agree. It’s the best thing for her, but each of them made sure to tell me a different, positive, personal story about “a friend of mine” who spent two weeks there and had a miraculous turnaround. It all felt so fake. Like they were trying to lift my spirits. Because what are they going to tell me -- “This won’t help anything.” – obviously they can’t do that, can they? Of course not.

Ebony’s dinner came around 5:30. It comes with a menu to fill out for the following day: breakfast, lunch and dinner. She’s not been filling them out so they’ve been rotating items on the list, which is fine, but I went through the menu with Ebony while she ate. Her meal was penne and meatballs, with roast chicken and mashed potatoes. Kinda weird. They did include a small plastic tub with balls of mozzarella and cherry tomoates and basil. Came with a side of olive oil and balsamic. I thought that was cool. Ebony wasn’t interested, which is curious because she loves mozzarella.

She moved in slow motion, reaching for the penne with her fork, getting one or two with some sauce and bringing it to her mouth. It was like watching Neo and Trinity dodge bullets. I filled a cup with ice water and added a flexi straw and asked her if she wanted anything else.

She looked at me, like a child. “Coke?”

There has never been, nor will there ever be, a greater endorsement for Coca-Cola. I told her I’d get her one, but Weill Cornell doesn’t carry Coke products, or Pepsi for that matter. Oh, they have Diet Pepsi and their other garbage products like Mountain Dew, but I was told, “Too much sugar.” They have no problem dispensing candy from the vending machines, but God forbid they sell sugary soft drinks. You know, because: logic.

So I went outside to one of the hot dog vendors and bought a Coke and came back and she was still working on her penne. She was all about the Coke, though. So that made her happy and she smiled after the first sip. Dear Coca-Cola, enough with the polar bears, I have your next commercial.

I got back to the menu with her but she kept shrugging her shoulders, so I ordered her an omlette and turkey sausage patty, with a blueberry muffin and some tea for breakfast; a hamburger (her choice!) for lunch, and a chicken Caesar wrap for dinner, both with salads and veg.

By 7 I had to get ready to leave for work but didn’t want to leave. My first day back I wanted to be early. One of my responsibilities is to recap and cut audio for Dancing with the Stars. I actually get paid for this, but it’s a big deal because it’s an ABC property that generates huge ratings and revenue, as it’s so incredibly popular. So I wanted to get in and fire up the machines and sort myself out before the show starts.

But I couldn’t leave. She finished her dinner and I took her tray away, packed up the caprese salad to take with me since she didn’t want it and looked at the clock. 7:15.

“I have to go.”

She looked so sad.

I reached out to hug her and she closed her eyes and pursed her lips to kiss me. I kissed her back and started to cry. Just sniffling and hot tears, but as I pulled back to wipe my nose, she touched my face and gently wiped my tears away, her eyes wide and mournful, trying to comprehend my sadness.

“I have to go to work, baby. But I’ll be back tomorrow, I promise.”

“Okay.” She gave me a smile.

“And I’ll bring you a Coke!”

Her face lit up again. So I leaned in and just hugged her forever. I could tell she was getting tired, so I told her to rest up for me. I kissed her a few more times, lingering; and as I stood up, she saluted me. She has never saluted me. I laughed.

She smiled and I kissed her one more time and then I had to go.

I went to the nurses’ station to tell them I was leaving and gave them the menu for tomorrow. Told them I’d be back tomorrow, just to telegraph my involvement. They’re nice. “She’ll be fine.”

I got to work on time but got chatty with the guys, bringing them up to speed on my situation. They were so understanding, but I completely forgot to order from Fine & Schapiro. DWTS starts at 8, runs two hours, and there’s a lot to cover. By the time I was done it was coming up on 11 and I had other things to do. I blew it.

Bad Deadpool.

Maybe tomorrow or later this week. I don’t know. It’ll probably be the 9th of Av by the time I get around to it. I don’t even know how things are going to go when her mother gets here. I’m so overwhelmed and I worry that I’m overlooking something. I just don’t want to be like Neeson at the end of Schindler’s List, going, “I could have done more.”

All I know is that I have to get up early in the morning and I can’t sleep and I just need to vent a little and all of a sudden it’s almost 6 a.m. I set the alarm for 10.

There’s not enough hours in the day and I want more time with Ebony. I hope I’m doing enough.


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,