Wednesday, May 02, 2018
Angel on my Shoulder
Tuesday, March 20, 2018
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
Sunday, March 18, 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.
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.
Saturday, March 17, 2018
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.
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.
Friday, March 16, 2018
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.
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.
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.
Wednesday, March 14, 2018
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?
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?
Monday, March 12, 2018
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.
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.
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