Dances with Cars: 1975-2007
elusis posting here.
If you have not heard elsewhere, Dances with Cars died in the wee hours of this morning either en route to or at her local hospital. Details are below the cut if you want them.
What I know at this time is that around 3am Mountain time, Pengie rang me up. He was obviously terribly upset. I managed to get him to tell me that paramedics were at the house, and working on Dances.
She had been in significant amounts of neurological pain for the past 10 days or so, thanks to increasing the dosage on her Remodulin, a medication intended to decrease the blood pressure in her heart and lungs (the cause of most of her serious illness in the past couple of years, a condition called pulmonary hypertension). The pain-relief medications she had been given weren't doing much for her, so when Pengie got back from visiting me in Denver, the first thing he did Wednesday morning was call her doctors and arrange a prescription for Fentanyl patches and lozenges, standard treatment for opioid-tolerant patients with specific types of pain includine neuropathy.
He reported to me earlier in the day that she had applied a patch (intended to reach potency in 72 hours) and taken a lozenge as prescribed, and was feeling somewhat better.
However later that night, she took another lozenge, and he had noticed her suddenly acting very groggy, so he tried to wake her to get her to bed. Instead she got more and more groggy, and started showing signs of suppressed respiration. He told me he had called 911, and found that her pulse was weak and thready. They were going to talk him through CPR but the paramedics arrived fairly quickly, along with a sheriff's deputy, presumably because a controlled substance was involved.
He was on the phone with me for around 30 minutes while the paramedics worked on Dances in the other room. Pengie had to explain to them, multiple times, about all her different medical conditions and medications. I know it sounded like he had to argue with the paramedics at one point about not disconnecting the Remodulin pump attached to her heart catheter, insisting that they *read* the medical binder with instructions for emergency personnel on how to handle her in a crisis. Finally he was told by the deputy that they were transporting Dances to the ER, and he caught up to the paramedics long enough to find out from them that they did have a pulse but it was very faint.
Pengie turned down a ride from the deputy in favor of driving himself to the hospital, and hung up with me so he could call their landlord and neighbor who is a nurse. She apparently arrived at the hospital just as the doctors were telling Pengie that they had not been able to stabilize Dances and she had died. He called me back at this point.
It's impossible to say at this point what happened. I'm not a doctor, but I know enough to speculate on possibilites such as sudden respiratory depression from the Fentanyl, a slow or sudden bleed-out thanks to the Remodulin along with her anticoagulant Coumadin, some kind of malfunction of her Remodulin pump, or just the pulmonary hypertension itself. I am guessing that there will be a formal autopsy to rule out suicide, assisted suicide, or homicide.
Dances had been very sick for a number of years. Recently she'd started to have a little more energy and ability to function, thanks to the good treatment she was getting at the PH clinic at Stanford. But she told me when she was diagnosed some 18 months ago that the typical life expectancy post-diagnosis was 10 years. Of course, the hope was that her condition could be managed long enough for treatments to evolve and give her even more time. And seemingly-horrific pronunciations like "10-year life expectancy" are nothing in comparison to the realization that you and your loved ones have been shorted by 8.5 years.
But she had been very sick, with multiple hospitalizations and of course the constant presence of other conditions as well - endometriosis, interstitial cystitis, a rare form of rheumatoid arthritis, bipolar disorder. She was, as she told me, "one symptom away from a diagnosis of lupus." We joked that when the bodies were out, she was apparently off raiding the personality warehouse, and by the time she showed up, there were only a bunch of crappy Eastern European knockoffs left. She had not been able to drive in a long time, or help much around the house, or go out for long periods. When Pengie was visiting me, he reported that she had cleaned the cat boxes, and they were both excited that it only left her about as tired as most people would be after a trip to the gym, something one recovers from in an hour or so rather than over the course of several days. This was a massive improvement.
Last time I visited SF, Pengie said to me late one night "I'm going to lose her before we get to grow old together." And I said "that's very possible," and we both cried a little. Agonizingly, we were right sooner than anyone anticipated.
I think Pengie is having to fight the urge to blame himself when he's not numb or sleeping. I know he feels bad that he was only home for 24 hours when this happened, but thank goodness he was there rather than it happening a day or two earlier. He got to give her the presents he'd brought back, and tell her about his trip. I know when he was on the phone with me right after her death, he was terribly upset that he had asked for and picked up the scrip for Fentanyl, as if this made him responsible for her death. I am reminding him that he is not a doctor and is not expected to be one.
Today he has been to the mortuary with Dances' sister and mother to pick out an urn for her remains. Sadly there were no Nightmare Before Christmas urns but I promised him that if the urn is not cool enough, we will make it cooler somehow. I believe they are working on figuring out what kind of memorial to have and when, but it is likely to be when I am in SF in a couple of weeks. Dances' mom is with Pengie and the cats tonight. He may well come and stay with me for a while as he figures out how to get back on his feet. He is my brother in every way that matters, so he and I will coexist for as long as he needs.
One of us will let people know more about details as they evolve - memorial, flowers, donations, however that all works out. You are welcome to email me at elusis (at) livejournal (dot) com if you want Pengie's contact information for cards, emails, calls, etc. Those of you who know her from communities in which she actively participated are welcome to link here.
What I know is this. My first in-person encounter with Dances was in 1998, when she and Pengie shared a room with five others of us at the ToriCon in Atlanta. They came in on a red-eye, and the rest of us had just survived a nonstop car trip from upstate NY to Atlanta, so we were already in bed with the lights out when they turned up at the hotel. In pitch darkness, the two of them felt around for a space on the floor, unpacked an air mattress, and pumped it up by hand, while we five groaned and tossed in the beds. "phht, phht, phht" went the hand pump. Soon the absurdity was more than we could bear and we all started snickering, then giggling, then outright guffawing, but we never turned the lights on. None of us had any idea what our new roommated looked like until the next morning, when we woke up and said "so THAT'S who you are!" and giglged some more.
And Dances, Pengie and I never stopped.
There are pictures I took in May 2006, on a day when she felt well enough to walk on the beach for the first time in years, here.
If you have not heard elsewhere, Dances with Cars died in the wee hours of this morning either en route to or at her local hospital. Details are below the cut if you want them.
What I know at this time is that around 3am Mountain time, Pengie rang me up. He was obviously terribly upset. I managed to get him to tell me that paramedics were at the house, and working on Dances.
She had been in significant amounts of neurological pain for the past 10 days or so, thanks to increasing the dosage on her Remodulin, a medication intended to decrease the blood pressure in her heart and lungs (the cause of most of her serious illness in the past couple of years, a condition called pulmonary hypertension). The pain-relief medications she had been given weren't doing much for her, so when Pengie got back from visiting me in Denver, the first thing he did Wednesday morning was call her doctors and arrange a prescription for Fentanyl patches and lozenges, standard treatment for opioid-tolerant patients with specific types of pain includine neuropathy.
He reported to me earlier in the day that she had applied a patch (intended to reach potency in 72 hours) and taken a lozenge as prescribed, and was feeling somewhat better.
However later that night, she took another lozenge, and he had noticed her suddenly acting very groggy, so he tried to wake her to get her to bed. Instead she got more and more groggy, and started showing signs of suppressed respiration. He told me he had called 911, and found that her pulse was weak and thready. They were going to talk him through CPR but the paramedics arrived fairly quickly, along with a sheriff's deputy, presumably because a controlled substance was involved.
He was on the phone with me for around 30 minutes while the paramedics worked on Dances in the other room. Pengie had to explain to them, multiple times, about all her different medical conditions and medications. I know it sounded like he had to argue with the paramedics at one point about not disconnecting the Remodulin pump attached to her heart catheter, insisting that they *read* the medical binder with instructions for emergency personnel on how to handle her in a crisis. Finally he was told by the deputy that they were transporting Dances to the ER, and he caught up to the paramedics long enough to find out from them that they did have a pulse but it was very faint.
Pengie turned down a ride from the deputy in favor of driving himself to the hospital, and hung up with me so he could call their landlord and neighbor who is a nurse. She apparently arrived at the hospital just as the doctors were telling Pengie that they had not been able to stabilize Dances and she had died. He called me back at this point.
It's impossible to say at this point what happened. I'm not a doctor, but I know enough to speculate on possibilites such as sudden respiratory depression from the Fentanyl, a slow or sudden bleed-out thanks to the Remodulin along with her anticoagulant Coumadin, some kind of malfunction of her Remodulin pump, or just the pulmonary hypertension itself. I am guessing that there will be a formal autopsy to rule out suicide, assisted suicide, or homicide.
Dances had been very sick for a number of years. Recently she'd started to have a little more energy and ability to function, thanks to the good treatment she was getting at the PH clinic at Stanford. But she told me when she was diagnosed some 18 months ago that the typical life expectancy post-diagnosis was 10 years. Of course, the hope was that her condition could be managed long enough for treatments to evolve and give her even more time. And seemingly-horrific pronunciations like "10-year life expectancy" are nothing in comparison to the realization that you and your loved ones have been shorted by 8.5 years.
But she had been very sick, with multiple hospitalizations and of course the constant presence of other conditions as well - endometriosis, interstitial cystitis, a rare form of rheumatoid arthritis, bipolar disorder. She was, as she told me, "one symptom away from a diagnosis of lupus." We joked that when the bodies were out, she was apparently off raiding the personality warehouse, and by the time she showed up, there were only a bunch of crappy Eastern European knockoffs left. She had not been able to drive in a long time, or help much around the house, or go out for long periods. When Pengie was visiting me, he reported that she had cleaned the cat boxes, and they were both excited that it only left her about as tired as most people would be after a trip to the gym, something one recovers from in an hour or so rather than over the course of several days. This was a massive improvement.
Last time I visited SF, Pengie said to me late one night "I'm going to lose her before we get to grow old together." And I said "that's very possible," and we both cried a little. Agonizingly, we were right sooner than anyone anticipated.
I think Pengie is having to fight the urge to blame himself when he's not numb or sleeping. I know he feels bad that he was only home for 24 hours when this happened, but thank goodness he was there rather than it happening a day or two earlier. He got to give her the presents he'd brought back, and tell her about his trip. I know when he was on the phone with me right after her death, he was terribly upset that he had asked for and picked up the scrip for Fentanyl, as if this made him responsible for her death. I am reminding him that he is not a doctor and is not expected to be one.
Today he has been to the mortuary with Dances' sister and mother to pick out an urn for her remains. Sadly there were no Nightmare Before Christmas urns but I promised him that if the urn is not cool enough, we will make it cooler somehow. I believe they are working on figuring out what kind of memorial to have and when, but it is likely to be when I am in SF in a couple of weeks. Dances' mom is with Pengie and the cats tonight. He may well come and stay with me for a while as he figures out how to get back on his feet. He is my brother in every way that matters, so he and I will coexist for as long as he needs.
One of us will let people know more about details as they evolve - memorial, flowers, donations, however that all works out. You are welcome to email me at elusis (at) livejournal (dot) com if you want Pengie's contact information for cards, emails, calls, etc. Those of you who know her from communities in which she actively participated are welcome to link here.
What I know is this. My first in-person encounter with Dances was in 1998, when she and Pengie shared a room with five others of us at the ToriCon in Atlanta. They came in on a red-eye, and the rest of us had just survived a nonstop car trip from upstate NY to Atlanta, so we were already in bed with the lights out when they turned up at the hotel. In pitch darkness, the two of them felt around for a space on the floor, unpacked an air mattress, and pumped it up by hand, while we five groaned and tossed in the beds. "phht, phht, phht" went the hand pump. Soon the absurdity was more than we could bear and we all started snickering, then giggling, then outright guffawing, but we never turned the lights on. None of us had any idea what our new roommated looked like until the next morning, when we woke up and said "so THAT'S who you are!" and giglged some more.
And Dances, Pengie and I never stopped.
There are pictures I took in May 2006, on a day when she felt well enough to walk on the beach for the first time in years, here.