Today is the one-year anniversary of Michael’s seizure so I’ll be doing an info post as well as a “my feelings” post. This is the info post, somewhat dry for purposes of passing on information to others going through or having gone through similar things. I will write my feelings and fill in more of the story with how I was reacting to all this in the next post.

It was a while between Michael’s seizure and diagnosis and this is all that went on:

As I chronicled before the seizure in —> this post, the summer was weird. I was writing the book so I was frustrated at times, worried at other times and just needed to let it go other times.

When Michael was complaining of a headache and not feeling well on the 15th of September, I thought it was Derek’s cold and that he would be fine.

When Gina screamed the next morning, “Something is wrong with Daddy!” and I came down to see Michael on the floor, eyes wild, shaking and drooling. I was stunned, shaken. I ran to him and said “it’s okay honey, it’s okay.” and I told Gina to call 911.

There were TUMS(tm) all over the floor. It was obvious that he had stood up to get the TUMS and seized in the middle of holding the bottle. I covered him up on the couch at about 1 am and here it was 6 am. What time did all this go one? How long was he on that floor? I felt like crying but knew the situation needed me to be calm.

I thought about the Excedrin PM. Michael never took anything because he had some issues with aspirin as a child and even though there is no aspirin in Excedrin PM (in regular Excedrin but not the PM), I was convinced I poisoned him.

The police came first and then the EMTs. The first EMT said to Michael, “Blink if you can hear me.” and he blinked. Oh god, I was hoping he was not aware of what was going on. For the first time since I’ve known him, he not only looked scared, he looked terrified.

They whisked him out of the house. My mind was racing with a hundred things it could be. I was convinced it had to be the seafood and medicine. Something went wrong with the combination. He sensed it the night before. I should have taken him to the hospital then. I shouldn’t have put him on the couch and covered him up and let him sleep there. I shouldn’t have I shouldn’t have I shouldn’t have. In these moments, the only thing you think about is what you did wrong.

They took him to the local hospital and we followed in the car. He seized several more times in the ER.

The doctor came to me and I will never forget his words: “Your husband is a very sick man.”

I asked him what that meant and he said there was a mass on his brain and it looked too big to be a tumor, it might be a virus or perhaps he had a stroke. But they had to transfer him if the chief neurologist at the large medical center would take him. They were faxing the ultrasounds to him. They would know in a minute.

Mass? Virus? Stroke? What about Alzheimers? Does Alzheimers show up as a mass on your brain? I did not know.

Michael was admitted to Westchester Medical Center and they were transporting him. My instructions were to call WMC later and see when he would be settled in his room. He was going to be admitted through the ER and it could take hours.

We showered. We paced. We finally decided to drive there. I don’t remember anything about going there but I remember walking into the ER and it seemed like a zoo. People were in the hallways on stretchers. There was a lot of noise. It was like the show “ER” only not entertaining. It seemed like bedlam. WMC is a teaching hospital so every doctor had interns or students or someone tagging along…so there was twice as many people as needed to be.

Michael was in a room off the nurses station. He was sedated. People were running in and out. A few asked me if I was “the wife.” THE wife. No, I’m not THE wife, I’m Michael’s wife, I’m his wife. They would say “are you the wife?” and I would say, “No, I’m Michael’s wife.” They would give me exasperated “oh we’ve got a live one here” looks.

It was hours and things happened that I’ll chronicle in my “feelings” post but for here, they finally they decided to intubate him because he was not breathing well on his own. After that it was hours before he was transferred to NeuroICU.

Everything was quiet up there. They wanted him to get some rest. I don’t know how a person who is in a medically induced coma can’t NOT rest. They wanted us gone. I drove home over an hour to get a few hours sleep and then right back again.

My battles with the hospital, nurses and doctors started right off the bat. They didn’t like me inquiring at the desk in the ER when Michael would be taken of; they didn’t like me asking what tests they were doing and when; they didn’t like me telling the nurses to be easy. They and I got off to a stormy beginning of our relationship that would stay stormy. But I found that if you want to advocate for your loved one, you better be up in their face. Otherwise nothing is going to happen. I was always there ready to pounce. The good nurses (and there were many) loved me and my advocacy; the not-so-good ones not so much.

I spoke with the neurologist who seemed to think I had neglected my husband (more in the feelings post), and he was very snarky toward me. As if I didn’t care about Michael so he was just going to give me surface information. I found that doctors and nurses are very quick to judge you and sum up your relationship based on some fairly arbitrary factors. As I chronicled in the first post Michael had stopped shaving, he was wearing those old sneakers into the creek and his feet were muddy, he was picking at his psoriasis (something I had been on him about). All symptoms of his declining mental status but I thought he was living the hillbilly life since he wasn’t working. As an urbanite, I did not approve of the hillbilly life but you couldn’t tell Michael anything.

So there they were, doctors and nurses, saying this man is unkempt, not healthy, family doesn’t care. They gave me information in terse soundbites. I felt their judgment and wanted to scream, “YOU HAVE NO IDEA ABOUT ANYTHING.” I simply didn’t want to defend this. Michael was Michael and if he was in a “phase” then I let him be. Sometimes he liked to grow out his beard and hair. I hated it but when I would say, “Honey I think it’s time to shave and get a haircut.” he would say “I like my hair long.” and I would say it every few days until finally it was “okay, I’ll cut it.”

He had just recently been out of work and was growing out his beard. He had gotten very sloppy about it over the summer. If you look at older pictures of him he always kept it neat and trimmed but in the last few months, it was neither neat nor trimmed and always in a state of “I’m not quite sure if I’m growing this thing or not.” As I said before, these were all puzzling behaviors but when it came to his hair and beard he liked to grow it out and get away with that as much as possible. I thought (and it turned out I was wrong) that this was just one of those times.

So why stand there and defend my relationship? The head nurse was spitting information at me as if I had brought a beaten child to the ER and I was the abuser. My world was reeling.

For the next few days I showed up to NeuroICU trying to get some idea of what was going on. Because of where the masses were, frontal lobe and temporal lobe, they thought it was a virus. If it was a virus, he would be in a hospital a while and receive treatment and then he’d be all better. ALL BETTER. They didn’t think it could be anything else because of the size of the masses. One mass covered almost the entire right side of the brain. The other covered about 25 percent of the left side. No one would be walking around with tumors that size. No headaches? No. No dizziness? No. Nothing. They said it was just too massive to be a tumor.

I never rooted for a virus before, but here I was rooting.

I consented to a lumbar puncture for them to take fluid from his spine and analyze it for a virus. Another nightmare day at the hospital. It would be one of many. They didn’t tell me when it was finished even though I was in the waiting room, they didn’t tell me when results would be back, they said to go home and they’d call me later.

By 10 pm they hadn’t called and I called and called and called. Finally I got someone at 1 am and said I wanted to know NOW what the results were. I wanted my nightmare to be over. I wanted them to tell me it was a virus and it was treatable.

Finally someone called me back and said, no there was no sign of a virus. The chief neurosurgeon would call me. We’d discuss a craniotomy. Goodnight.

The phone call had all the charm and compassion of “It’s not a virus now stop bugging us lady.”

My world spun. Not a virus. Too big to be a tumor. What the HELL was it? What?

I continued to go to the hospital. I continued to argue and fuss with just about everyone there. One issue was that even though I was “the wife” I was not “the health proxy” so they really didn’t need to tell me ANYTHING per New York law and when I got really annoying, they would whip out that card.

I urge everyone who lives in New York to get a Health Care Proxy signed so that if something happens, your family can get information. Do both a Proxy and a Legal Representative form.

They informed me they were going to do a craniotomy to take tissue from the brain. Since the mass was larger on the right side, that is where they were going to make the incision. Michael was still intubated. He had not been awake in days. I had never gone this long without talking to him and all my brain could do was scream, “WAKE UP!”

For anyone going through this, I know that every story is different and I post mine because I was hungry for information when we were experiencing this, especially in this phase. The short of it (I will post the long of it in the next Info: post) is that we did not receive an exact diagnosis for almost 3 weeks. We had the lumbar puncture, then we had the craniotomy and then we had to wait for the lab report and then a meeting of the neurology group (which includes surgeons, radiologists, oncologists etc etc) to determine a course of treatment.

In my next Info: post I’ll talk about the craniotomy and diagnosis. I did talk about the diagnosis last year at this time (10/11) so if you’re here looking for information, please check the archives for that.

The bottom line (and I realize that everyone’s experience is different and I URGE cancer families to share theirs here) is that a horrifying thing happened, they didn’t know what it was, I received a lot of conflicting information and though Michael had some wonderful nurses, the majority of doctors and some of the nurses were patently unhelpful. I had to dig and fight and be the ultimate pain in the butt. They knew that if I called and did not get a call back, I was calling back in short order.

This was a difference between me and Michael. When someone would tell him they would call back, he would wait FOREVER for the call back. I would give them an hour or two and then I was on the phone again. With the hospital there were numerous power struggles and I reported one NeuroICU nurse to the supervisor as well as one of the interns. After a while people just started to give me what I wanted as soon I showed up to ask.

Despite the fact that I’m an attorney and have other graduate degrees, they still treated me like I was an idiot. When I was 24 I had a rash on my arm and mentioned it to my OB/GYN during a pre-natal exam. He said to me, “I’ll send you to a derma….uh skin doctor.” Yes, doctor, I’m too f’ing stupid to get “dermatologist.” I was 24 and hadn’t graduated from college so I figured that is what the patronizing attitude was all about. But here I was, a licensed attorney, and much older. And they STILL treated me like “derma….skin doctor.” I demanded, DEMANDED, that they stop talking down to me.

I must have said, “Look, I’m not an idiot…” about 500 times in those 3 weeks. Other key phrases that I seemed to repeat over and over again was, “I don’t give a shit what you think of me, I give a shit about Michael and if I have to blow through you to take care of him, that’s what I’m going to do.” and “I didn’t ask you that question, I asked this one and I want an answer to THIS one…” and “If you sigh or roll your eyes at me one more time, I’m reporting you.” and “If I don’t get an answer from you, I’m just going to keep calling until I can find someone who is not a dumbass.” and telling the nurses, “Call the resident again.” and not taking ANY excuses as to why they can’t call him or her again. I said I’ll go to the lobby and call him myself if you don’t.

I always get better treatment most anywhere when I pull out the old “I’m a lawyer card…” (which I try not to do unless it’s necessary) but it took a lot more than that with this group. They were just in the mode of being withholding snark machines.

Be the squeaky wheel in the “what the hell is going on?” time. Even if doctors couldn’t tell me anything, they would explain some of the possibilities to me. It wasn’t comforting, but I was becoming knowledgeable and gaining their respect (begrudgingly but still…).

Be the squeaky wheel when your loved one’s life hangs in the balance. My irascible nature was not enough to save Michael in the end but it allowed me (and eventually him) to know I did all I could. And that’s important.