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-- Proverbs 11:25
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"I came here to chew bubblegum and kick ass. And I'm all out of bubblegum." -- "Rowdy" Roddy Piper (1954-2015), They Live
Monday, October 07, 2013

Mr. Brilliant: 1955 - 2013
Posted by Jill | 10:40 PM

September 21, 1986


And it wasn't even the bladder cancer.

Mr. Brilliant suffered a very small stroke two weeks ago today. He even said it was small. "I seem to have suffered a small stroke," he said in words that were barely intelligible. It didn't seem all that small, given that he could hardly speak and his left arm was twitching. "I don't seem able to control my left arm." He seemed confused and loopy, but also able to think clearly. "I think your thoughts are OK, you're just having trouble pronouncing words, is that right?" I asked. "Yes," he said.

I called the ambulance to take him to the hospital. He started having seizures before we even left the house. Unfortunately, the EMTs have to take you to the nearest hospital, which is how he ended up at Valley Hospital instead of Hackensack University Medical Center. In the emergency room, they cleaned him up, did the same bedside neuro test that he had passed with flying colors just weeks earlier, only this time he was able to pass none of it. "M...o...y..a...m...o...y...a", he tried to explain. He was given Ativan and Keppra to try and stop the seizures and admitted to the neurology ICU.

Where they proceeded to let him seize for thirty-six hours, titrating the meds and telling me they had to do that to find the right dose.

By Monday night I was hysterical. I called Dr. Chess Club's office and he called back within 15 minutes, horrified that they had let him seize for so long. He explained to me about status epilepticus, which is a state of constant seizure, and told me to call the covering neurologist and say that he MUST be intubated and sedated to knock down the seizures before anyone turns in for the night. I will not relate anything else about my dealings with Valley Hospital right now, but Dr. Chess Club also felt that he would be more comfortable if Mr. B. was transported and under his care, at which point I began feeling more relief already.

It took all day on Tuesday the 24th to get a bed at Big Prestigious Hospital and the transport, but by late night, he had been moved, and I heaved a huge sigh of relief.

The plan was to keep him sedated for a few days to let his brain rest, then take him off sedation and make sure he's not still having seizures. The expectation was that he would gradually wake up, and then they could gradually withdraw the anti-seizure drugs.

On Friday the 27th the sedation was withdrawn. At 1:10 PM on Sunday the 29th, I was sitting in his room by the window, using the sill as a desk for my laptop. Suddenly I saw a yellow balloon bobbing right outside my window. Then it started wafting up, up, and away. There was no reason for a yellow balloon to be there outside a 2nd floor window of a hospital sitting on an overpass over the FDR Drive. But there it was. On September 30 he opened his eyes. There was no way to tell if he was actually in there. It seemed to me that he was, but now I am not sure. I went home for two medical appointments of my own, then back in to camp out in a chair in his room all night, because I wanted to be there as he started to emerge from the sedation. On October 1, no one was really sure of how conscious he was. Dr. Chess Club came in and said that he was not convinced the Versed had worn off. He said we are not there yet in terms of having to deal with decisions, and he was still hopeful we wouldn't get there.

By Wednesday, October 2, it was becoming clear that he was not coming out of it. They withdrew one of the seizure meds, and at my request, we had a meeting in the afternoon to discuss Mr. B's advance directive. The short-term plan was to try to withdraw the anti-seizure meds and see if he would go into seizure. They suggested I take a day off an not come in, since for 8 days straight I had left the house at 5 AM to get there by 6:30 and beat the traffic, worked an 8 hour day by the windowsill including teleconferences, and then driven home at rush hour -- and I was exhausted. I think they were not all that hopeful by that point and did not want me to see him go back into seizure, which he did, on Thursday night, after all the depakote had been flushed from his system.

On Friday, October 4, he broke into seizures on BOTH sides while the ICU team was examining him, and this time THEY requested the family meeting. By now I knew full well what was coming.

They offered me 4 options for long-term plan going forward:

1. Continue the same plan of medicating for seizures and support for breathing and nutrition, with resuscitation.

2. DNR but continue the same plan for medication, breathing and nutrition.

3. DNR with no escalation of care - no tests, no MRIs, no infusions.

4. DNR and withdrawal of care - use morphine drip and continue medicating for seizures.

Options 1 and 2 required tracheostomy and feeding tube in the stomach.

Option 3 could result in blood clots, pneumonia, other infections.

So there was really no option other than #4. No way did Mr. B. want a trach and direct feeding tube...and there was no sign that he would ever be able to stop seizing no matter how long we let his brain rest on Versed, which they put him back on when he started seizing.

So Saturday we went in. I have never felt so utterly awful in my life. I knew in my head that Mr. B. the person -- the guy who joked about wanting to be stuffed and propped in the corner after death as a constant reminder of our marriage, the guy who liked the Grateful Dead and Miles Davis and kung-fu and comic book movies -- was already gone; perhaps gone with that yellow balloon on Sunday. But it's one thing to know that what lies in the bed is by now just a shell holding him back from whatever is next for him. It's quite another to know that when the ventilator is removed from your spouse, he will die; to go into the room after it is removed and watch him, swollen with edema, still with hiccups from chemotherapy, nearly bald, with a healing EDAS scar, covered in bruises from needle sticks and IVs, open his eyes briefly in a reflex action. It was barely 20 minutes after they removed the ventilator that he stopped breathing. It is so upsetting just to type that again, because I can never un-see what I saw and what I had to experience. I don't wish that on anyone, and I hope none of you ever have to make that decision or stand by while it happens.

After he was gone, one of the ICU doctors told me that the results of his MRI from the day before showed multiple strokes all over his brain, as if his entire head -- all those little weak moyamoya vessels -- were exploding at once. There really was no other choice I could have made that would have been anything other than torment.

Mr. B. had always said he was not afraid of death, but he was terribly afraid of dying. At some point I will regard it as a blessing, that he got the end he wanted -- unconscious and painless and gentle, instead of the horror that is slow painful death from bladder cancer. But we were together for thirty years, lived together for twenty-nine, and had celebrated our twenty-seventh wedding anniversary just the evening before his stroke. I cannot bring myself to believe that he's gone. I go upstairs and there are all his clothes and his CDs and the size-13 sneakers that we always called Bozo shoes. There's the chair he sat in while he smoked, and his guitar and bass and his tech books. And when I think that never again will someone come downstairs and say, "Good morning, sweetie"; never again will I need to call home to tell someone I'm on my way home from work; that I will never, ever see him again, I feel like I don't know how I will go on. And yet I will go on, and make a life, because I have to. Because life is just too short not to. I just wish his wasn't as short as it was.

Note: Thanks to everyone on the medical teams at Memorial Sloan-Kettering Institute and New York Presbyterian/Weill Cornell that treated Mr. B. over the last six months and who tried mightily to restore him to health. These are some of the brightest, most caring, dedicated people I have ever met:

  • Dr. Jonathan Rosenberg
  • Dr. Bernard Bochner
  • Dr. Han Xiao
  • Dr. Preeti Parhar
  • Dr. Igor Gavrilovic
  • Dr. Babak Navi
  • Dr. Jared Knopman
  • Dr. Daniel Lahm
  • Dr. Fowaz Al-Mufti
  • Dr. Baxter Allen
  • Dr. Benjamin Rapoport
  • The chemotherapy nurses at Memorial Sloan-Kettering Cancer Center in Basking Ridge, NJ
  • The nurses and all the staff in the Neurosciences Intensive Care Unit at NYP/Weill-Cornell

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47 Comments:
Anonymous Anonymous said...
I do not know you at all , I read your blog, I knew your husband was very ill... I am so sorry you lost your loved one . You have written a lovely testament to him ... you will go on , yes , and you will carry him with you always . he sounds like he was a great person .
thank you for sharing this
Lucy Finn Smith

Anonymous eeasterberg said...
Words fail me...I am just so sorry for your loss.

Blogger Unknown said...
I'm sorry for your loss

Blogger Christopher Smith said...
Most sincere condolences on your loss. May his name be forever a blessing. I am glad that you two had the time together that you did.

Nine Bows.

Blogger D. said...
My deep and sincere condolences on your husband's death.

May his memory be a blessing.

Anonymous ShortWoman said...
I am very sorry for your loss.

Blogger elizabeth said...
My heart breaks for you. I'm so sorry. I don't know what else to say.

Blogger Elayne said...
Jill, I'm so very, very sorry. I still remember the day the two of you met, in that old copy shop in Englewood. I hold so many wonderful memories of both of you from those days. My heart is with you. Please let me know how I can help.

Blogger skywind said...
You are so brave, and so strong. Thank you for sharing this {{{{hugs}}}}

Blogger O~ said...
My deepest and heartfelt sympathies.
October~

Blogger Melina said...
Godspeed Mr. Brilliant...you will be missed.

Blogger auxchats said...
My sympathy at your loss. I have just been to that sad place, and the pain is still fresh. For you, as they say in Ireland, "Mind yourself, now." My experience is that things do not get better, they get different. May Mr. Brilliant rest in peace.

auxchats

Blogger auxchats said...
My sympathy at your loss. I have just been to that sad place, and the pain is still fresh. For you, as they say in Ireland, "Mind yourself, now." My experience is that things do not get better, they get different. May Mr. Brilliant rest in peace.

auxchats

Anonymous Anonymous said...
Thank you for sharing your story. And my deepest condolences. -JG

Anonymous jb said...
Oh, Jill: I've been a reader of yours for so long that you're part of my mental family, and I'm deeply sorry for your loss. You are certainly receiving kind thoughts and good vibrations from all over Blogistan. Please let me add my own.

Blogger mbarnato said...
Please accept my sincere sympathies and condolences at the passing of your husband. Such a huge loss. May flights of angels sing him to his rest.

Blogger Constance Murphy said...
"Good morning sweetie!" Dear Jill, You have enriched us all by sharing these last hard times you and Mr. Brilliant have had. I hope you can hear some echo of your generosity and courage greeting you each morning.

Blogger Maggie Jochild said...
I can hardly stand that this happened -- to you, to him. I want to reverse time and alter history. I have listened to you with aching heart every day, and will continue to do so. Bless you for writing.

Blogger Abu Scooter said...
I am so, so sorry.

Blogger mileslarboy said...
I AM SOOOOOOOOO SORRY.
I would often smile when you would refer to "Mr. Brilliant." My deepest sympathy. A beautiful tribute.

Blogger Oblio said...
"Life is not measured by the number of breaths we take, but by the moments that take our breath away." - George Carlin

Hang tough, never lose the love, share it with everyone that you know and he'll be with you... always.

Blogger The New York Crank said...
I wish I had the words. There are none. But thank you for sharing your story and your grief, and for your brave, wry humor in the face of adversity. It may bring comfort and courage to some of us who have also lost people we loved. I know it helped me, and I am grateful to you for that.

-The New York Crank

Anonymous Syrbal/Labrys said...
There simply is no sufficient comfort I can offer; let me just say "thank you" instead....for your courage, your love, and your honesty.

Anonymous Jim said...
Like so many, I only know you through your blog. But that didn't keep the tears from flowing. I am so very sorry.

Blogger Teri said...
Through your writing I had come to 'know' Mr. Brilliant. You have my deepest sympathy and heartfelt condolences. Thank you for sharing not only your life, but that of your wonderful partner.

Blogger jurassicpork said...
Jill, hun:

Since Barb's on Facebook while I'm not not, we've known about this for days. However, in lieu of an actual announcement from you on Blogger.com, I felt it wasn't my place to break the news of something so intensely personal. It wasn't my place.

But now that you've broken the news, allow me to add my candle to the torch that blazes for you among your fans, friends and loved ones. Barb and I still have your address on our Christmas card mailing list and you'll be receiving something from us in a few days. But for now, please accept our deepest and sincerest condolences on your loss. You're never completely alone. Never forget that.

Stay strong, girl. We all love you.

Anonymous Anonymous said...
My sincere condolences. I lost my husband 22 years ago. It was the hardest time I've ever had. It's OK to take one minute at a time. Some days it is all you will be able to handle. Please take good care of you.
I am so very sorry.
Diane Mack

Anonymous Anonymous said...
Having been through that a few years ago, I understand not wishing it on your worst enemy. At the same time, I wouldn't change anything I did for all the money in the world. To be there all the way through, offering love, comfort, and encouragement was difficult, but such a privilege.
A book that might help you some, as it did me, is Joan Didion's "The Year of Magical Thinking" about the year after her husband's death. At times it got too close to home and I had to put it aside, to pick it back up later once I felt strong enough to confront those moments, thoughts, memories, and fears again.
You have my sincere condolences! In time it will get more bearable, memories will focus more on the good ones and less on the awful ones, and you will always have that love in your heart. There are some things that NO ONE can take away from us!
Wishing you peace!

Blogger Phil said...
Jill, you know you have my most sincere and heartfelt sympathies.
I just went through a not quite such a nightmare scenario recently and wound up losing my Father on Sunday because of a fatal delayed reaction to a prescription.

I have to say you are one of the most bad assed little ladies I have ever had the privilege of swapping electrons with.
Woe be unto the dumb asses in your sights.

RIP Mr. B

Much love and respect.

Phil
(Busted)

Blogger Shelly Stewart said...
Jill, you were on my heart tonight for some reason and I found your blog again. I am so very sorry for your loss. Words fail me and my heart aches for you. Please contact me if you ever need anything. Your old writing friend, Shelly

Anonymous sitiaishah salim said...
Jill,
Please accept my deepest condolence and sympathy. RIP Mr. Brilliant.

Anonymous KanaW said...
This was heartbreaking.
Huge hugs and deepest sympathy from Hawai'i.

Anonymous The WP said...
may steve's memory forever be a blessing for you, jill.

{{{{{hugs}}}}

Blogger Matthew Stephens said...
I'm at a loss for words. My deepest condolences.

Blogger Rick Cowles said...

:-(

You are in my thoughts and prayers, Jill.

Blogger Batocchio said...
Oh Jill, I'm so sorry.

Blogger Nan said...
Words fail me. Sincere condolences.

Blogger Farmerkat said...
Jill,
I'm deeply saddened for your loss of your companion, your love. Please know my thoughts and love are with you during this extremely difficult time. Farmerkat

Anonymous Barry said...
I have no words, but I send my deepest thoughts and prayers for peace and comfort, however inadequate that may be.

Blogger K said...
Jill,

I am so, so sorry for your loss, and I am so sorry you had to go through this.

Sending you lots of love,

K

Blogger Patricia said...
There are no words. Try and get through a minute, then an hour, then maybe a day. Grief is the hardest thing a human being goes through, be gentle with yourself. You are in my prayers.

Anonymous Anonymous said...
I haven't read thru the comments because I can't stop quietly crying. I don't presume to know how you feel but I know how I would feel.
May some higher power, friends and family send you and Mr. B's soul peace.

Blogger Buttermilk Sky said...
I am so sorry.

Blogger Wendy said...
Dear Jill,

Your courage, dedication, compassion and strength through this very difficult period, and ultimate loss, are nothing short of admirable.

Your tribute to Mr. B was deeply touching. Your raw emotion and pain, as well as your deep love for Mr. B, were evident throughout.

A wonderful love story which ended all too soon. Treasure all your memories and hold them close to your heard. Life goes on, albeit in a very different way, but your strength, and the love and support from family, friends and your blogging family will be there for you.

Time to take care of yourself and do what you have to do.

Sincerely,
Wendy

Vancouver, BC Canada


Anonymous Anonymous said...
It is a very odd feeling when someone dies that I've never met yet I still feel a great loss. You two had become my friends and I checked on you frequently. I will miss Mr Brilliant and the enlightenment you brought to us daily. God bless you and keep you. Know that you did the right thing, the only thing you could and that was exactly as he had wished. Care for yourself now. Rest, eat right and give yourself some time before you rejoin the world again. For you will, it just won't be the same without him.

Anonymous Anonymous said...
Please accept my sincere condolences for your loss. I can't imagine what you must be going through.

Bless you.

Anonymous Anonymous said...
So sorry for your loss...no words can really make any difference in such a terrible situation.
Just know that you did your best, you did all the right things, you fought the good fight.
My heart goes out to you.
I hope you keep writing, maybe it will be healing for you...
Peace