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On Friday the 27th the sedation was withdrawn.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

Labels: grief, moyamoya, nothing is certain except death and taxes, personal musings