Bring on the Night

It has been a week since Ebony passed. Numerous phone calls, emails and texts messages have come through and I ignored most of them. I didn’t want to see people but I didn’t want to be alone. Not much has changed.

It has been an inauspicious week of self-destruction and self-flagellation but mostly just crying. Ebony’s Mother’s husband came up to get her and I left on Wednesday so they could have some time. I think they left on Friday. I stayed away because I didn’t want to return to an empty apartment.

On Sunday I came back and wasn’t here five minutes before I started to fall apart. Ebony and I were together for 10 years, lived together for six and I spent the last six months taking care of her. To come back and not have her here… it was all so overwhelming. Everything reminds me of her and everything makes me ache.

Mediplus, the medical products rental company, came and picked up the bed yesterday and today I am waiting for the cremation services company to return Ebony’s ashes to me. I am present but not at all ready.

I have been playing music but find it difficult to choose anything that doesn’t make me cry. Today it’s a lot of reggae and dub: Prince Far I, Black Uhuru, Steel Pulse, Shaggy; Bob Marley hurts the most.

Last Monday night, after I had been at the hospital for 3 days straight, Sundai, her Mother, decided to stay with Ebony. I needed to go home. Shortly after 2 in the morning, Sunday called and I knew. She was crying and handed the phone to the RN, Kayla. She told me that Ebony’s oxygen was dropping and I should get there.

I got dressed in a flash and punched up a Lyft. Downstairs in 3 minutes, I was outside and climbing into a white four-door SUV. I told the guy, Ralph, I had to be there. He must have broken every law on the books to get me there. The ride receipt says he picked me up at 2:37 a.m. and dropped me at Weill Cornell at 3:04 a.m. 

Ebony’s breathing has slowed but she was asleep when I arrived. Sundai let me take the chair next to the bed and I held her hand and told her I was there. I told her I loved her and kissed her and kept telling her I loved her and that she was not alone.

About ten or fifteen minutes later I could no longer stand the incessant beeping and outside noise of the Neurology wing. I wanted to play music for Ebony. With her Mother there, I couldn’t very well put on Judas Priest or Motorhead, so I put on “Legend,” by Bob Marley and the Wailers. A greatest hits collection, it consists of many, many beautiful love songs and is, without a doubt, a truly magnificent album and one she really enjoyed. So I pulled it up on my phone and set the phone on the bed near her shoulder. And then I just sat there and held her hand.

I was still holding her hand when she passed. Her mother noticed the monitor had stopped. Ebony looked so peaceful. Eyes closed and head turned to the side. Her mouth was open ever so slightly. That’s how she used to sleep. Like she didn’t have a care in the world.

The nurse came in and checked her vitals and then, I think for the next three hours, people just kept fucking coming in the room. Nurses wanting to hug us, the Hospice RN who looks like Christine Baranski and who is one of those… I don’t know. She put both of her hands on my cheeks and kissed my forehead. You know, that person who tells you about the universe and how Ebony’s soul is traveling? That lady. I just wanted to sit there with Ebony. Her hand was still warm and these fucking people kept coming in. I know they all mean well but I’m crying and I can’t breathe and I just wanted to hold Ebony’s hand and fucking social workers are coming in to talk about “arrangements” and some aide came to change the trash bin liner – there was no trash in, they had just changed it the night before and it’s not like it was being attacked by seagulls. Honestly.

Then one of the social workers said, oh, by the way, you have to leave. “You will have vacate the room at 11.” What? Like seriously, what the fucking fuck? Turns out it has something to do with how the human body, I don’t know, transitions. But also, they need the fucking room. Get out, bitches. We were all nice before, but now it’s fuck you, you have to leave.

Sundai had pulled it together but I was a crying mess of just snot and tears and I didn’t want to go. I didn’t want to leave her. Sundai said we have to go and I refused. I didn’t want to leave without someone staying with her. So Sundai got Winnie, this nurse from the Caribbean (all the nurses that weren’t named Kayla or Nicole were from the Caribbean it seemed) to come in. She could see I was a wreck and she spoke softly when she touched my hand and said, “You have to go, love.”

I don’t even remember the ride home and the last seven days were very F. Scott Bukowski. I started going through some of her things in the bedroom and I have keep coming out because I cannot stop crying. At some point I turned into Liam Neeson in “Love, Actually.” I am heartbroken and grief-stricken and I cannot talk about Ebony without falling apart. I loved her so much

So I’m here waiting for the crematory to return her ashes and I’ve been up all morning and sitting here all day and it’s driving me nuts but I kinda don’t want them to come: I just don’t want to face it. Her cousin said she would help me plan a Memorial and I think we’ll have to do that for the family and work and close friends but I also want to figure out something to do at Duff’s, for her friends and fellow metalheads. Because I know she’d want that. Duff’s is where we met – old Duff’s in Williamsburg on Kent and North 3^rd – so it makes total sense. Maybe something in Newport, too. 

It was Ebony’s wish to be cremated and have her ashes scattered across the water – along the Fjords of Norway. I am not fucking kidding. What a badass. She always talked about going to Norway and it was one of those things we were supposed to do but time, money and everything else got in our way. We should have gone and I regret it terribly. She loved all those Scando bands but she was especially intrigued by the country of Norway because of the landscape and the long periods of darkness. She was such a creature of the night. 

I will keep my promise somehow and Mister Bear and I will take her to Norway. 

Going to Brazil...

The Love of my life is off to see Motorhead.

We will have to catch up with her after the show.

Ebony “Evelyn” Caprice Duncan

Fiancée, friend and total badass

January 12, 1976 — March 20, 2018

The Darkest Hour is Upon Is

In the past few hours Ebony’s breathing has become labored as her lungs are filling with fluid. They are going to get the respiratory team to see her and try suction to alleviate the buildup.

Dr Navi, who only a couple of days ago said it would be a matter of weeks, just told me he doesn’t believe she will make it out of the hospital. Weeks have become days.

Ebony’s Mother apparently consented to the DNR/DNI but neglected to tell me. I’m not going to split hairs over it. They are going to give her a bunch of drugs to make sure she isn’t in pain and will keep her comfortable.

Dispatches from the Front

(Saturday evening, March 17)

Ebony has pneumonia.

I stayed over last night and just sat with Ebony, holding her hand. They had given her some pretty heavy painkillers so she slept straight through. Even when the sun was coming up and light was slowly illuminating the courtyard outside of her window — and even when shift change was starting — she was sleeping peacefully. We could have flown her to Helsinki, with stops in Oslo and Stockholm, and she would not have woken up until  we arrived and were greeted by glamorous, well-educated reindeer with slightly low self-esteem and a taste for rock n’roll.

I got to the hospital around 4:30, navigating my way through a sea of green and puke puddles — High Tide for the “Irish” on the UES — and grabbed a coffee from Au Bon Pain.

I ran into Ebony’s Mom in the hall and she told me news. Ebony has pneumonia and is being treated with some antibiotics I have never heard of and pretty heavy painkillers that are allowing her to sleep right through anything.

The day nurse — a nice guy named Taylor — gave her something to break up her congestion — Albuterol and Ipratropium bromide — and by the time I got here, Ebony’s breathing had improved substantially. Not enough to take her off the facemask, but when she wakes up I will tell her that she looks like a sexy pilot in a jet fighter plane.

Vitaly is here, giving her a ultrasound to examine her liver, kidneys, stomach/abdomen and lungs. The room is silent but for Ebony’s breathing as her Mother and I watch the images on the screen.

The silence is broken when he has finished and her her roommate — name unknown — gets a visitor. They are old-school New Yorkers and sound like they would have been burglary victims on Barney Miller.

He is a bit loud and he makes calls to her friends and to each one he says, “Guess who I’ve got sitting next to me?” like he’s about to announce the celebrities on “Dancing with the Stars.” Then she gets on the phone and gives her pain history for 10 minutes then complains about the hospital food. Ebony gets to sleep through this.

Her mother just told me that her aunts, having been out visiting other relatives would not be able to stay overnight tonight. I’m a little disappointed because I could use a proper night’s sleep but they’re leaving tomorrow and I don’t have to go to work for 15 weeks so I am loathe to complain. Plus, if Ebony wakes up, I’ll be here and if anyone neglects her, I will raise Holy Hell because all this hospital stuff in the last 3 1/2 years has made me that super-annoying Patient Advocate prick and I am sure my mother would be disappointed in me but when it comes to Ebony, I do not suffer fools gladly, or quietly.

Mostly everyone here is really good and I am so tremendously grateful for the care she is receiving and the good people who look after the patients as if they were family. There are some real doozies, though. Last night one of the Neuro team residents stopped by — she’s a Millennial who ends her definitive sentences with an inflection that makes them sound like questions. She came by to tell me what Dr Navi has already told us and when I brought up the incident about Ebony bleeding after Aziza had swabbed her nose (checking for MURSA, apparently), she began to argue and moved the focus away from her breathing and I felt like she was trying to distract me from the problem at hand. This was made worse by her rebuttals ending with inflections until I lost it and asked her if she knew what defenestration is.

Thankfully, the people on today — Taylor, Marique—  we’re great. I am waiting to see who comes on in the next half hour.

Ebony is still sleeping and is expected to sleep through the night. Her roommate is watching a marathon of “Family Feud” right now and I may have to ask for some painkillers for myself. One of the questions was, “One hundred people surveyed, top eight answers are on the board. Name a word that rhymes with Jump.”

It is amazing how I can be at one of the best health care facilities in North America yet feel like it is actively making me ill.

Once again, I reaffirm my position: all hospitals should have a bar.

Ass end of a Dog Day

I am sitting in Ebony’s room and listening to her breathe, which sounds a bit like snoring. I went out to get some dinner around 9 and came back at 9:45 and found her nose bleeding and gurgling because blood had seeped into her mouth. She had bled over the oxygen line in her nose. I ran to the nurse’s station to get her nurse, Aziza, who came back and quickly began to clean Ebony up. After wiping her nose and mouth, she used suction — similar instrument to a dentist — and drew out much of the blood and mucus from her mouth. She mentioned that she had swabbed Ebony’s nose for culture and thinks that triggered the bleed.

Ebony returned to breathing but with a slight gurgle , as if there was still liquid in her mouth. I asked the nurse about it and she started quizzing me about being there, saying that I would have to leave. When I explained that Patient Services had sorted this out on my behalf and assured me that I could stay overnight and there would be no further problems, she wanted the name of the person I talked to and had me then spell my name. She never cleaned the blood and went back to the desk.

Later, another nurse — charge nurse I think — came to inform me that I would likely have to leave but “Gilda” would be coming to speak to me.

As yet, Gilda has not arrived and I have since and told Aziza that Ebony’s breathing concerned me. I stopped out of the room so that she could help Ebony and perhaps suction the remaining fluid in her mouth, and hopefully clean up the blood.

I took video of Ebony in this condition for posterity, though I am reluctant to share it in order to protect her dignity. But I emailed it to myself and am holding on to it.

After all we have been through today, it’s only fitting that the day should end as badly as it began.

In the Hour of Chaos

This morning the doctors came to us with more devastating news: complications with Ebony’s liver and kidneys indicate that her body is beginning to shut down. The lead attending MD said that it is now a matter of weeks and we need to seriously consider Hospice. Presently, she may have an infection which could be in her lungs or sinuses but is causing labored breathing.

I am taking a Leave of Absence from ABC. Not sure if I will be able to draw any income but that they are giving me this time is greatly appreciated.

When/if she is able, we will be bringing her home and initiating Hospice, where she will be surrounded by love and as much metal as she can stand.

Meditations from the Rim of Hell

Ebony’s Mother is pissed at me and tomorrow Ebony’s two aunts and grandmother arrive from North Carolina.

Had the meeting with Ebony’s doctors this afternoon. Her Neuro-Oncologist, one of the surgeons, a Neuro Resident, the lead attending physician for The Neurology wing and the social worker who arranged the meeting.

The Lead Attending explained that Ebony has a pulmonary embolism, or blood clot, in her lung and needs to be put on blood thinners to treat it but was now at risk for a number of things including stroke and bleeding on the brain. That she is stabilized is good because it lessens the risk somewhat. Her wound is healing nicely and they would likely take her off oxygen soon and switch her blood thinner IV to something milder and if she responds well to it, could be home this weekend.

The horrible news was an extended remix of the news we got Wednesday, delivered again by her Neuro-Oncologist: she cannot return to her Cancer treatment while on blood thinners, which means the tumor will continue to progress, which in turn means that there will be more incidents like last week as it continues. At this point he is recommending we do not continue treatment and consider hospice.

He and the social worker asked me if I knew Ebony’s wishes. I said that I know she doesn’t want to be on machines. The doctor made a point to tell me that I didn’t have to decide anything today and advised me that I should think about it, take some time and let them know.

The doctors left and I sat across from Ebony’s mother, who had turned sideways in her chair. The social worker asked me if I have considered Hospice and if I understood what it offers.

Her Mom got up in a huff and started walking out. I asked to stay became this is about Ebony. She said, "You're gonna do what you want, anyway," and left.

What sucks is that she is mad at me and I haven't made any decisions in or against Ebony’s favor. Clearly I have been distracted. I have been asking questions of the doctors and trying to get as much info before I make a decision. Problem is: the doctors, the social workers tell me, "You don't have to decide right now." And then ask you repeatedly if you have come to a decision.

Sundai seems to think I have made a decision to murder her daughter. I don’t know how she could think that, I just love Ebony so much. She's just so special. I held her hand for most of the afternoon and when I would take it away for a second to wipe the sweat from my palms or shake off the pins and needles, she would hold her hand up and look at me -- you ever a video of a cat pawing its owner to pet it? It was like that and it was heartbreaking and awesome.

But no decisions have been made and there is no rush for me to do so, so I’m not doing anything right now. Right now, the plan is: there is no plan.

Sundai went home, I am staying overnight with Ebony. The cast and crew of the North Carolina production of "Guess Who's Coming To Dinner " — Ebony’s two aunts and grandmother — arrive tomorrow. So I have that going for me.

I’m sure it’ll be fine.

The Night Nurse is here to check Ebony’s vitals so I am going back down to Au Bon Pain to shore up their Forth Quarter profits as Inhabe been doing for the last ten days.

As I stare into the abyss I am starting to wonder if there is an Au Bon Pain in Hell and of so, is it possible that I am already there?

Sophie’s Choice

I left work early tonight. Ebony’s mother called and told me to I needed to speak with Susannah, a Physician’s Assistant. So I called, and after listening to her, made the decision to leave and go to the hospital.

Ebony has a blood clot on her lower right lung that is impairing her breathing. The clot was not there previously. The way they treat blood clots is to administer blood thinners. However, this is dangerous as Ebony is recovering from surgery. Moreover, blood thinners are dangerous given her condition as they could cause her tumor to bleed, bleeding in the brain or swelling of the brain. All of which could prove fatal. If she does not receive blood thinners, the clot will most likely continue to restrict her breathing and she could pass in a matter of days. Another possibility is that more clots could form and lead to a heart attack or stroke.

I had to make the decision. A Sophie’s Choice if there ever was one.

Healing, and her comfort, were my biggest concerns. I made the decision to take a chance and allowed blood thinners. I think we have to take the chance on getting rid of the clot I asked if they had some kind of pain medication they can administer and Susannah said she would most likely get an IV of something to combat any pain.

Susannah said she would contact the team and get back to us. It could take until morning.

I don’t know if I will be able to sit up all night: I am exhausted. But I will be right here by Ebony’s side.

Robert Frost poems

Ebony is out of surgery, back in her room and recovering nicely, thanks to Dilaudid. She is now fitted with a Gastric Tube and as soon as tomorrow will begin receiving nutrients through the valve. The nurse was just here demonstrating the valve with Ebony’s meds.

My heart was in my mouth the entire time because the surgical team showed up before they brought her up to the OR “to say Hi!” And what better time to meet the the sociopathic Anesthesiologist? He wanted to let me know all the bad things that can happen during surgery and what that might mean. Like a tracheotomy or need for a breathing tube. And what better time to tell me than right before you take her in, huh? Thanks, Doc. I’m coming to your house for Halloween, I bet you thought “The Verdict” was a depressing movie where the bad guys won.

I walked up to the OR ahead of Ebony and before they took her in, I asked for a moment with her. I held her hand and leaned in and started tearing up, telling her how much I love her and that I will be there when she gets out and I’ll play her the new Judas Priest album which came out today. Ebony released her hand from mine and put it on my cheek, which is kinda our thing since this all began. It only made me cry harder but let me know she’s still in there, she’ll still fighting.

When she got out, her mother and I went to recovery to see her. Ebony came through just fine but was maybe in a little pain so they have some Fentanyl. Her mother said she would meet us in the room and I played some of the new Priest album — “Firepower” — for her. She seemed to really enjoy it, but the painkillers kicked in and she was out after three songs.

So after a great deal of anxiety and stress, Ebony is stable and will be getting Astronaut meals in what will become our new normal.

We have managed to get through this but we are not out of the woods yet: we will eventually be at that point where two roads will diverge. But I have promises to keep, and miles to go before I sleep.

Hope, memories and distraction

The last two days have been the hardest days of my life. Looking back, I can recall the worst of times: getting mugged was pretty bad. Getting hit by a van wasn’t great, either; but Ebony’s Cancer diagnosis was the worst.

I have been comparatively fortunate otherwise. Lucky? Blessed? Privileged? Honored? All of those things at times. What’s a typical bad day for me? The escalator is out at ABC and I have to take the stairs to the mezzanine to get the elevator to the newsroom? “What the Fuck, man? This place sucks!”

(I am joking, of course, Ha,ha. Kidding! I have to be careful of what I say: I don’t want to piss of the wrong people or in seven days Kerry Washington will crawl out of my television and kill me.)

Ebony has surgery today. The doctors are implanting a valve called a Gastric Tube into her stomach. As she can no longer swallow properly, and a Nasogastric feeding tube, inserted through her nose, is only meant to be temporary — and causes her pain and discomfort. — the doctors say that this is the best way for her to ingest nutrients. The device can be removed should she regain her ability to swallow.

Last night one of the members of the surgical team stopped by to explain the procedure to me and have me sign the release form.

The process of placing a Gastric tube involves inserting a camera with a light at the tip through the mouth into the stomach. They use this device to press the stomach against the abdomen and make the incision where they will insert the valve and after doing so, sew her up.

The valve is secured internally and externally, essentially, by washers. During the healing process, collagen forms naturally, adhering the stomach against the interior of the abdomen.

Because Ebony has been on steroids for over six months, her procedure will be different. Steroids inhibit collagen from forming so they will need to attach Ebony’s stomach to the inside of her abdomen with stitches in order to prevent Septic Peritonitis, which would occur if the valve separates from the stomach and the contents leak into her body, causing infection and abdominal pain.

The recovery from surgery will take two to four weeks depending how quickly the surgical wound heals. Because she has been having her Cancer treated with infusions of Avastin, they have to watch her closely as one of the side-effects of Avastin is that it inhibits wounds from healing.

When she pulls through this, and I am confident that she will, what we must face is that she may not be able to swallow conventional food again. Ebony was hardly a “foodie,” but she loves great wine and chocolate; cheese, olives and cherry peppers stuffed with prosciutto and provolone. She loves sushi, seafood, particularly shellfish; pizza amd pasta and more than anything, potato chips. She also loves burgers from White Castle (“It’s a Queens thing,” she would tell me.), McDonald’s French fries and Popeye’s fried chicken (spicy), which she introduced me to. Over the ten years we have been together, I unknowingly turned her into a Chowdah Monstah, and watched her indulge in clam chowder everywhere we went in Newport and Eastern New England. She loves the chowder at The Black Pearl but was also quite fond of the chowder at Flo’s. Oh, and she loves chocolate. Did I mention?

Unfortunately, those days are over, at least for now.

Wednesday afternoon, when all this was laid out by her primary MD, we were also presented with the grim question of whether we wanted to sign a DNR/DNI. This is a form which stipulates that in the event of arrest, the doctors will not resuscitate and neither will they intubate or hook her up to a ventilator.

As her Health Care Proxy and Power of Attorney, her fiancé, lover and partner of 10 years, I went to honor Ebony’s wishes. I know what she wants, what she has expressed to me in thee past before this happened, but I am horribly conflicted. Ebony is the Love of my Life and I would trade places with her in a second. She doesn’t deserve what has befallen her and it is agonizing to watch. I have called out of work the past two nights because I am overwhelmed and a crying mess.

I know where this is going. At this point, we all do. How long it takes and how we get there is how we honor Ebony and celebrate her life.

For six months I have lived on hope, memories and distraction. Yesterday, they moved Ebony from a quad to a double and she got a window with a view of the front entrance of the hospital. I think it’s important, to keep looking out, looking forward.

I just hope I can face whatever lies ahead with courage, for Ebony.

By your side

Ebony needs to be fitted with a Gastric Peg, a small valve inserted into her stomach, which will be less invasive than a nasogastric tube. This way she will be able to receive nutrients through an IV line without much fuss. 

They removed the feeding tube earlier and placed her on another IV solution to keep her hydrated and get her what she needs — this time I think it’s magnesium. 

Later, around 9 p.m., a 30ish PA showed up to inform me that she was there to reinsert the nasogastric tube because the doctors don’t think they will be able to take her for surgery until Friday. I explained to the young lady that she needs to be extremely careful and before I finished my sentence highlighting WHY, she cut me off and said, “I do this all the time.”

Well, I thought, “That is the kind of mondaine arrogance that makes for an excellent doctor: she must be good. Soon, she’ll be dining in the cafeteria and leaving her tray on the table when she’s finished with her Thai salad, checking her phone as she sashays away.”

I clutched Ebony’s band tightly, holding it to my chest through the four attempts by Little Miss Can’t-Be-Wrong, glaring at her. Ebony winced as she slid the tube through her nostril and tried to feed it in, meeting with resistance again and again as Ebony’s sore passageway gave rise to gasps. 

Finally she stopped and said, “I think we’ll have to try again in a few hours and let her rest. I’ll let the team know.” 

And then she left without so much as a courtesy “goodnight.”

Later, sometime after 11, the attending nurse came to tell me that “visiting hours are over.”

This has happened twice before and I tweeted about it, writing, “@nyphospital This new visitation policy is awful. Since when do you keep family from being with loved ones who are cancer patients? Because I work odd hours shouldn’t be held against me or prevent me from sitting quietly with my fiancée. It wasn’t a problem before. @staceysager7”*

*(Stacey Sager is a Channel 7 reporter I tagged, who has beaten Cancer twice. )

The next day Patient Services got back to me around 8 a.m. and apologized. I pointed out that this had not been a problem before and the NYP website states plainly that it has “open visiting hours...with no set times.”

Later, when I was leaving the hospital to go to work, two reps met me to tell me it was a misunderstanding and there would be no problems going forward.

Now, here I was again. But I didn’t fly off the handle, I just calmly whispered and explained what happened and asked her to check with her supervisor to see if there might be a note from Patient Services.

Another woman returned to give the same speech and I repeated myself, calmly. She went away and did not return.

Later, the first girl returned and told me she needed to reposition Ebony and asked if could help her. We removed a pillow from underneath Her right side and placed it under her left side. Movement and repositioning helps prevent bed sores. But when we rolled her she made a face and she had tears rolling down her cheeks. I started choking up. “Isn’t there anything you can give her?”

Ebony has only been on painkillers during and after surgery. So first girl said she would call the doctor. When she returned, she brought something for Ebony and at  1:45, gave her 1mg of Morphine. So, “Yay!” first girl! 

That was two hours ago and Ebony is resting peacefully. Meanwhile, I have been here for 24 hours and awake for maybe 36? Hard to keep track. I need to sleep, but I am still here, by Ebony’s side. 

Respect The Bear!

I have a photograph of Ebony that I took early Monday morning while she was sleeping. She was holding Mister Bear and facing the left side of her hospital bed where I was sitting. She has the feeding tube installed and just behind her is an array of medical equipment. The way the camera in my phone captured her face, you cannot tell if she is sleeping or squinting at me. It is a jarring picture of you have not followed her progress, such that it is, but I took it because, to me, she looks peaceful and I have been in the habit of trying to accumulate pictures of her as I try to hold on to my sanity and our precious time together while Cancer ruthlessly tries to tighten its hold on her daily. 

I was at the hospital Monday from 3 a.m. until Noon, when her mother arrived. The overnight RNs would not let me stay longer than one minute with her in the room and when I asked why, I got a curt, “That’s the rules. You can come back in the morning.” 

I started to argue that I have done it before and, more importantly, the website plainly states that, “New York Presbyterian has open visiting hours.” I was received poorly and told to come back at 7. It wasn’t worth getting into a tizzy and disturbing other patients but it was galling.

After I visited with Sleeping Beauty for a minute — kisses on the cheek and a quiet “Hello, I love you!” — I went downstairs and got a coffee. Actually, it was a coffee and a chocolate croissant because I was mad and eating my feelings. 

As I sipped my coffee,I swiped through pictures on my phone and came across a picture of Dr Josue (Ho Sway) from NY Presbyterian Queens, holding up Mister Bear three and a half hours after rescuing him from a laundry bin the day a careless aide gathered Ebony’s bedding and tossed it in the laundry chute with poor Mister Bear inside. 

I was careful and have always been careful when in the hospital, to tell everyone who comes to look after Ebony that Mister Bear is part of the family. Here at Weill Cornell there’s so many people in and out that its almost impossible to connect with all of them, like King Canute trying to hold back the tides.

When I returned to her room later, Mister Bear was face down on a chair and not with her. I was pissed.

I thought maybe if I left a note above her bed, it might help but that might not get read. This is when I thought about the photograph I took. If I could make it into a poster, with instructions, people might take note of it, however silly, and be careful with Mister Bear. There really wasn’t time to ask any of my talented artist friends so, with a little pluck, I found a site that generates Memes, made one and then sent it to FedEx Kinko’s for a quick turnaround.

I picked up the poster at Kinko’s before I visited Ebony on my way in to work. The cashier/attendant asked me about it. He was curious, he said, because he thought Ebony might be a boxer and recovering from a match. “Doesn’t she look like a fighter?” he asked a colleague as he held it up for inspection. The guy asked me about her weight class and I got the biggest kick out of it because they were serious. But more than that, I saw that picture in a brand new light. It’s not jarring at all — it shows her for whom she truly is: a fighter.

Also, I looked it up: in Women’s Boxing, given her height and weight, Ebony would be a Super Middleweight or Light Heavyweight like Laila Ali. 

Or as I already knew: a total badass. 

When I stopped in before work I was only able to spend a few minutes. She was awake and immediately touched my cheek. This makes me so happy but is absolutely heartbreaking knowing what she is going through and 1., not being able to help her, and 2., having so little time as I have to work. There is simply never enough time, but I lingered longer than I should have because she kept touching my face and I just love her so much and those moments are so special and intimate for us, I cherish them. Now that she can no longer speak, I suspect that she does, too.

Getting a poster made may seem frivolous but is is what I can do to protect her. She loves that bear and when I am not here or her Mother is not here, Mister Bear is. If she wakes up, with a picc line (Peripherally inserted central catheter), a urinary catheter and a nasogastric feeding tube all running into her while she lies prone in a strange place listening to New Age, she will look down and see Mister Bear, feel him in her hand and know that as awful as things are, she is not alone. 

It’s after 6:00 a.m. and I have been here since 3 and seen a bunch of new RNs. “You must be Mark/her fiancé...” They have all seen the poster. “We’re taking good care of Ebony and Mister Bear!” They smile and smirk, but I don’t care: that bear is right where he should be against her chest and I could cry it makes me so happy. 

Ebony would not be happy to know that I am sharing a picture of her when she is so vulnerable and not looking her best but I want to celebrate her for the fighter that she is. In six months, Cancer has robbed her of her ability to speak, walk or care for herself without assistance but she is punching back hard and she is still here

Even in the state she’s in, she is stronger than I am. 

Between Heaven and Despair

It’s a little after 3:30 and I’m at Au Bon Pain in the main lobby. They name some of their items after places and things: the Newport Turkey sandwich, the Farmhouse omelette, Southwest Chicken soup. I think, given their location inside a hospital the size of Weill Cornell in New York City, they should name the items after moods of the people who have loved ones here to reflect their place within Health Care.

For example: right now I might be having the Despair Deluxe Vegetarian Salad, a small Panic Attack Chicken Noodle soup with some of those nice Parmesan Breadsticks for People Who Have Just Given Up. And of course I would wash that down with a lovely 16 ounce bottle of Yelling At The Top of My Lungs Because I’ve Had It with the Lousy Cell Service in This Place Sparkling Water.

Ebony is resting and looks as if she doesn’t have a care in the world, in spite of being fitted with an EEG to monitor her brain activity for evidence of possible seizures. I was informed by Katie, her nurse, that neither family nor friends may sleep in the room, so I took my overtired and disgruntled ass downstairs to consider something to eat.

I ended up having the Despair and a small Panic, but only had a bottle of Poland Spring to drink.

We admitted Ebony on Saturday because she has had increased difficulty swallowing and started to “pocket” her food, holding it in the corner of her cheek like a squirrel. More, by the end of the week she was unable to consume water and it would dribble slowly out of her the corner of her mouth when she turned her head.

The doctors in the ED — Emergency Department — said she was dehydrated and ran an IV of saline and one of potassium along with her regular drug cocktail, which, unfortunately for her, does not contain vodka. But it was deemed necessary to insert a feeding tube, something I knew nothing about. It is a medical line, similar to an IV line, that is inserted into your nostrils and fed (pushed) back and down your throat into your stomach. It is awful and if you ever want to really hurt someone —  maybe someone who cuts you off in traffic — in my opinion, threatening to “stick a feeding tube down their fucking throat” would be a more than satisfactory means of exacting revenge than merely shooting them. If you shoot someone, they’ll (probably) die. If you stick a feeding tube down their throat they will be in great agony and then continued discomfort for as long as they were made to use it.

Ebony was in pain and winced and shrieked and tears ran down her cheeks as the Attending Resident (Resident Evil) made three attempts to succeed, first with a line that was too thick, then twice more with a thin line. I held Ebony’s head still and cried with her whispering to her that it would be okay and I loved her and we needed to do this.
I hate myself.

Having finished, Resident Evil taped the line to her nose and I asked for a mouth swab, which is a sponge on a stick that you dunk in ice water and pour in an antiseptic of some kind to cleanse the mouth. I just wanted to wet her mouth a bit because the feeling of having a tube down your throat must be excruciating. It did not escape my Catholic School upbringing that I was now like the Roman sentry who taunted Christ on the Cross, giving him a wet rag at the end of a stick to wet his lips, cruelly soaked in vinegar. Here, my Beautiful Bride-to-Be, enjoy this delicious antiseptic cleanser and know how much I love you. ❤️

The resident returned to say they had to X-ray Ebony’s stomach to make sure the tube was in right and guess what? It wasn’t. So at four-thirty in the afternoon she had to remove it because it hadn’t reached her stomach, which was no more pleasant than when it went in as it was removed coated with saliva and blood.

Her mother, who has been staying with us to help take care of Ebony, joined me in asking that Ebony be allowed to wait a day before trying this again so she got a night’s reprieve and then, in her hour of need, I had to go to work so I would manage and produce the backstage audio highlights from the 90th Academy Awards.

While at work her mother texted me to say Ebony was finally brought to a room and she was going home to sleep.

I have since returned to her room to watch her for a little bit — she is sleeping like an angel — and I will stay here or outside probably until her mother returns at Noon.

I went back and talked to the nurse, Katie, who patiently listened to me explain our journey in the last five years and smirked knowingly when I groused about the bedside manner of the attending physician from Sunday morning. I realized I was talking her ear off about Ebony — how we met, her love of heavy and extreme metal, places we’d been and things we had done together. I even showed her pictures of Ebony over our ten years together. I have been doing that a lot lately, because I no longer socialize. I don’t see my friends, really except online and in the end I can only really talk about one thing: Ebony is the Love of My Life. Yet I find myself talking to everyone from cab drivers and the Asian lady at the vegetable stand I am certain is a drug front, to security guards to Sting’s publicist about her. I do it reflexively and don’t even realize that I am doing it sometimes. It has been on my mind a lot recently: Ebony and I would have been married this year. That was sort of the plan. We got engaged in 2011 and we’re enjoying a long engagement, spending time living together and really learning about each other. When we started talking, somewhat seriously about a wedding and honeymoon, around my birthday, she started having what we later learned were auras and that summer was diagnosed with brain cancer.

At some point this morning , her doctor will join the Neuro team and check in on Ebony and her EEG. And then they will have to fit her with the feeding tube but Katie seemed to think a better trained resident would be enlisted. I will still beg her doctor to consider reasonable alternatives that might be less invasive.

Of course, you will be able to read all about this in greater detail when I finish my memoir, “Doctor, Doctor Please! My life is a UFO song and other tales about being a Heavy Metal Caregiver.”

I once interviewed Ian Astbury, frontman for The Cult and one of our favorite singers, and asked him why he hadn’t written a memoir. He said, “Because the story isn’t finished yet.” Neither is my story about Ebony. I just hope it has a happy ending.