Sunday night I had a really difficult dream that has been hanging on in this mind of mine. I dreamt that I had taken Mike’s very ill body from the hospital and just kept it with me, hidden for 6 weeks. It was in those last stages, and I got so annoyed with doctors coming in and trying to propose insane procedures as he was dying (remember when they wanted to remove his intestine as he was like 10 hours from death?) …so in my dream, I just took him. He wasn’t conscious, but I liked knowing he was not in the hospital. I took him..in like a body bag with the top opened up… in the car, then to NH, and then to our house. Finally Dr. Evans – after 6 weeks convinced me to bring him in for tests.
So I brought him in and Evans said there was something they could do to relieve the brain swelling. Given that he had had limited brain activity for so long, I asked, “Why…why would we do that? We know he'll never function properly again. Why would we do that?"
To which he replied, “That is a very good question.”
So, I said no, zipped him up, detached him from everything, and carried him back to the car.
There was another dream with a similar theme about a month ago… but in that one, it was earlier in the process. It was after Mike’s first surgery. He had “successfully recovered.” Still had his beautiful floppy hair. We had resumed ComedySportz rehearsals. And then we went in for a check up with Evans and Andrews. We learned that it was growing again. (This whole thing is consistent with what actually happened – exactly two years ago. It was January when we learned that the freaking thing was growing some large cystic components… and it was the last week of January and first week of February when he underwent three surgeries to implant the stubborn catheter (shunt) in his head to drain the cyst.).
So, in the dream, we were in Harvey (his 96 Saturn), driving home from the city, just following this meeting with the surgeons. He announced clear as day to me (in the dream) that he was done “dealing with this brain tumor.” He was finished making accommodations for it and losing time from his life to treat it and corral it.
He was wearing his black jeans and blue comedysportz jacket. He looked a little pissed off, but unshakably confident. He turned to me and said, “I’m not going to have them take it out again. I’m not going to spend anymore time in the hospital. If it’s going to kill me, then let it kill me on my time.”
And that was that.
I woke up full of regrets. Why did we go forward with the surgery in early April? Why didn’t we think to just let him live with it until he died – giving him an ending that would have maintained his dignity in a way that his actual death did not allow?
Had we opted to just let it run its course, I thought, I would have had him for longer. He would have had more time with friends. He would have had more time with Baxter. And his death would have been less horrifying that the five-month long death scene we all lived through in spring 2006.
But then my logical brain kicked in. Thank god. I started actually playing out the scenario that would have transpired had he refused treatment starting in January. First, he would have died in like a day without medication… so living a truly autonomous life completely free from medical intervention was out of the question.
Ok, so what if he agreed to take the medication, but refused all surgeries (including the implanted catheter etc)? Well, the reality is – the thing would have continued to grow. Fast. And all the bullshit from March through July that played out in fast forward in the hospital… all that shit would have played out anyway. The bigger the tumor got, the greater the pressure and swelling, the more we would have had all that bullshit:
- No short term memory
- Erratic behavior
- Confabulation (making shit up that never happened)
- Dehydration (which would have exacerbated all the above)
And all of these things would have once again precluded him from living an autonomous life. He wouldn’t have been able to be alone. He would have had to be cared for.
But, at least he’d still be alive, I thought. Right?
Wrong again, silly Danna subconscious.
The location of the tumor and its rapid regrowth would have likely resulted in the same consequences as the post-operative swelling that ultimately killed him. There’s only so much room in there – and whether that space had been taken up quickly by swelling after his July 7th surgery (as happened in real life), or if it had been taken up by the tumor itself as it grew and grew and grew uncontrolled over time… It would still have affected the same part of his brain. The midbrain. The central nervous system. Body temperature. Heart Rate. At some point, all this would have caused tachycardia (rapid heart rate) anyway. And that is what caused a heart attack – which it probably would in the face of an uncontrolled tumor left alone to wreak havoc. Ultimately, the heart attack stopped blood flow to the major organs. His organs began to fail. His kidneys stopped working. His body retained fluids – and all the 1000 medications being pumped into his blood had nowhere to go. Nowhere. Except to make him swollen and to cause further pressure inside his ailing body.
But, thinks the manic hamster on a wheel in my overactive brain, BUT - maybe if he hadn’t under gone all these surgeries, he wouldn’t have gotten DIC (that fucked up blood clotting illness that prevented us from being able to give him certain treatments or remedies). And maybe some little change in all of these various factors would have meant that he wouldn’t have entered Status Epilepticus - the constant seizing of the brain that renders a person brain dead… which was the final straw in our vicious storm.
I keep trying to play this out as though it’s a "choose your own adventure book." And had we just chosen to take the purple door instead of the red one, everything would be different. But it wouldn’t be. No matter what, Mike would have lost control, independence, and time at home.
And - Mike hated being dependent on anyone for anything.
And - more than that... Mike hated the fucking hospital:
February 6, 2006 in an email Mike sent to friends after his series of three surgeries to put the fucking shunt in:
“I am thankfully back at work today, having been released from the hospital last Friday. And since I’m not in the hospital, today is a good day.”
I hate that I revisit this shit. I hate that my brain even allows me down this road, thinking about the various things we COULD have done. But I think the moral of this story and the moral of these dreams is that no matter how much we could have tried to foresee what was coming, there would have been no real way to get Mike’s life back to what he would have wanted it to be. Once the tumor was there and saying its big “fuck you” to all of us, it was a done deal.
In fact, after months of my dragging my freaking feet, I finally emailed Mike's dear friend (and diligent dutiful lawyer), Mike's autopsy report. He had asked to see it for it for months, just to ease his mind that Mike did not die from substandard medical care. I had a hard time even allowing my mind to introduce that possibility, so I kept putting off the request. Finally I sent him the 25 page hellish document (which included dreadful references to the color of Mike's eyes and hair... in addition to downright hysterical reference to random organs. Such as the following statement: "The right adrenal weighs 8 g. and the left adrenal weighs 9 g. They are unremarkable.") Mike, you have a lot of reasons to be pissed off, but whatever dude called your adrenals "unremarkable" is a douchebag!
So, our friend then sent the report to several lawyer folks he knows - just to be certain that everything played out as best it could have...
And his reply basically said that given the information everyone had at the time and given the various options chosen, it is quite fair to say that Mike did NOT die from substandard care. However, he wrote,
"We concluded that a lawsuit against the tumor would be successful, but that the tumor probably didn’t have insurance and had few assets. Damn deadbeat tumors."
So, once in motion - perhaps the whole fucking thing was a done deal. And perhaps, in spite of how horrifying it all was and how terrible and undignified and ugly and haunting those last days were… Maybe that ending at least hastened the slow downward spiral that could have gone on for weeks or months. Maybe the way his actual death played out was the only way that it could be in his own control.
I think about when I told him he could go. When I told him that we didn’t want him to go, but that if he couldn’t fight anymore and if he had to go, that we’d be ok. That Bax and I would make it ok. And I remember knowing he heard me as he looked right at me. And that was the last day we heard from Mike Young. That was Thursday. Tuesday morning he was gone.
[Cut to last night]
I went to see M. Butterfly at PTC’s new beautiful theater last night with Cara. It’s an amazing space. I had to leave at intermission when I learned the show ran almost 3 hours (ADHD danna + young child + tired mama), but in the lobby on my out, I met some of the people who work in the development office of PTC. They love the outpouring of support for Mike's seat there. They were so sweet and kind. And it's true - everyone seems to have known Mike somehow.
I left the theater and walked towards my car. Suddenly I was short of breath and felt like sobbing for the first time in a long while.
When I heard the sound of the theater door opening, it all came flooding back. I just wanted to be with him for a minute. I thought that maybe I would find him there at the theater.
And I did.
The faces – old and new. The games. The laughs. The friends who knew Mike Young before I even knew he existed. The conversations about how to make scenes better and funnier. The arguments. The direction. Jadico is directing the group now. His style is similar to Mike’s. He’s stern. He’s a little OCD. He’s a perfectionist. And he’s really really good at what he does. It was a little like coming home.
So, all I wanted was to be with Mike for a moment. And there, in the presence of friends, and the improv comedy troupe that he directed for so long, I think I got exactly what I wanted.