This week last year, March 11-18, was the week that my life unraveled. Mike's brain unraveled - and consequently, so did my life. When I put together the backstory for my blog manuscript, I included the story of the days leading up to the start of the blog. I've decided to post the chapters detailing the events of early March. I apologize in advance if it's depressing or stressful - or if it brings you back "into it." I just feel like each time I place things "out there" in cyberspace, they exert less of a grip on me.
I share them and they are no longer just mine. They are all of ours.
Today at yoga, Beth instructed us to think of a statement or mantra to say to ourselves. Something that we wished we would hear, or something we need to say to ourselves. Mine was simple:
"I am not alone."
****
In Mid-February, Mike had a check-up with his neurosurgeon, Dr. Evans, to make plans for radiation therapy. When Evans came in the room and Mike was sitting up on the examination table, Evans looked surprised.
“You look good,” he said, as though this was an unexpected development.
“Yeah, I feel pretty good. Tired, and kind of heavy, but good.”
Evans put Mike’s most recent MRI up on the lightbox. “The reason I’m asking is because there’s something strange going on in your scans. See this bright area that’s tracking along the catheter?” he said, pointing it out with his pen. “We’re not sure what’s going on here. It could be infection."
Evans decided that the best idea was to hold off on the six weeks of radiation treatment until we knew what was going on with the enhancement he saw on the scans. He explained that radiation in the face of any infection can be dangerous, so he wouldn’t be comfortable going ahead with it until we ruled out infection. We agreed.
From Mike’s point of view, holding off on radiation treatment was just fine. He wanted to go away to Charleston. When I had suggested early on that we skip Charleston and get the treatment over with, he became clearly annoyed.
“Smoosher, I need this trip. I need it. I need time with you – away from here and this whole thing,” he had said. Mike rarely expressed needs like this. He was generally flexible and easygoing. What could I say? It was his tumor. So I agreed that we should go.
********
It was in the last week of February that weird things began happening. One night, Mike went to bed at his usual 8:00 hour. When he went upstairs, I was on the phone with our neighbor Michelle. I talked with her for about two hours that night – even though she lives directly across the street. When I came up to bed, I accidentally awoke Mike. He used the bathroom and returned to bed.
“Is she still on the phone?” he asked me, looking wide awake.
“Who? You mean me?” I laughed.
“No,” he rubbed his eyes and squinted. “No… ummm… what’s her name…” he gestured with his hand as though I was supposed to fill in the blank with the name of this mystery person.
“Who, Mike?” I started to get angry.
“Smoosher, you know. The woman… The woman who sleeps here,” he pointed to the space between us in the bed.
“Are you fucking with me right now? Mike. Stop. Are you fucking with me?”
He looked at me, almost frightened.
“No.”
“What the fuck are you talking about?” My voice was elevated.
“Smoosher,” he said pleadingly, trying to slow down so that I would understand. “The woman. The other woman who lives in this house. What is her name?”
I got out of the bed and walked over to his side. I forced him to sit on the edge of the bed and took his shoulders in my hands, “SMOOSHER. Wake up. Are you awake? WAKE UP right now!”
“I am awake.”
“No, you’re not. You’re dreaming. You’re not making any fucking sense. Look at me. There are three people who live here. You, me, and Baxter. That’s it. There is no woman who lives here. Wishful thinking on your part, perhaps. But no, there is no such woman.” My tone was harsh and condescending.
He squinted and rubbed his eyes.
“Wait… wait,” he began, “I was dreaming. I dreamt that we lived in a house with all these couples that I went to college with.”
Geezus.
“I know no one lives here,” he assured me. “I’m sorry, Smoosher.” He sighed, “Time Fo’ Bed,” he said. And with that, he was asleep again.
************
March 8, 2006. Mike and I left for Charleston. Mike had planned a relaxing trip with reservations at the Andrew Pinckney Inn – a BnB just off of the market in Charleston.
When we got to the airport, Mike realized he had forgotten one of his medications. His Desmopressin (DDAVP) nasal spray. This was the medicine that he used to supplement a hormone that his body didn’t make anymore since the surgery. It is the hormone that our bodies release that tells us not to urinate out all the fluids in our body. Without this medication, Mike would pee and pee and pee and then become dehydrated. His sodium would elevate and he would get tired and slightly whacky. This is the condition that we would battle for months, Diabetes Insipidus.
He convinced me that it wasn’t a big deal. He had refills on his prescription and we would simply get it filled once we arrived in Charleston.
When we arrived, we checked into our room and immediately went in search of a pharmacy. We walked the streets of Charleston and finally found one that carried his medicine.
On our walk back to the Bed and Breakfast, Mike realized his palm pilot was missing. He had been playing some games on it while waiting for the prescription to be filled, but now it was gone. We retraced our steps to the pharmacy and found Mike’s pile of maps – which he had also forgotten – but no palm pilot. It seems that someone took it.
In typical Mike fashion, he sighed a quick sigh, shrugged, and said, “No big deal. I have everything saved on my computer at work. I’ll just have to get a new palm. That one was outdated anyway.”
I felt so angry. Not at Mike for forgetting the medicine or the palm pilot. But at Mike for not acknowledging how weird this all was – how unlike himself he was. We walked in silence. Finally I stopped him, “Smoosher, do you feel like yourself? Cause you certainly don’t seem like it.”
He looked hurt.
“No,” I backpedaled, “I just mean… you seem distracted or absent-minded. Less able to remember things than your usual self.”
“Hmm,” he said quietly, pausing to think for a moment, “Maybe you’re right.”
And that was it. End of discussion.
The rest of our vacation in Charleston was a combination of smooshiness and total dread. Mike was smooshy. I, in contrast, was watching my world fall apart before me.
Mike slept about fourteen hours a night and napped for another 2 or 3 in the afternoons. In the night, when he got up to use the bathroom, each time he would struggle to open the door to the hallway.
“Smoosher, what are you doing?” I would ask.
“I’m trying to go to the bathroom, but it’s all locked up,” he said.
“That’s cause that’s the door to the hallway.”
“Oooh,” he would say in a jovial exaggerated tone, “Doh! Silly Smoosher!”
Our first night there, we went to the ATM to take out money. Our account was overdrawn. Not by a little – but by several thousand. The entire trip we charged everything and agreed to figure out what was wrong with our finances when we returned to Philly.
********
One morning in Charleston, Mike left the BnB to go for a jog by the water – three blocks from our bed and breakfast. Fifteen minutes later, he was back in the room – smoothie in hand.
I laughed, “Some jog!”
He grinned a bit. “Eh,” he shrugged, “I couldn’t find the waterfront, so I grabbed a smoothie instead.” I looked at him quizzically, but he didn’t seem to register my concern.
I watched as he emptied his pockets onto the nightstand. There, in the pocket of his shorts, was a map.
That afternoon, we shopped in small boutiques along Market Street, holding hands, sipping on lattes. Yet, in each store, I watched in horror as Mike couldn’t find his way out. His sense of direction had vanished.
******
We returned to Philly on Saturday March 11. It was wonderful seeing Mike somewhat rested. At least he had had a wonderful vacation.
Between our return on March 11 and that Friday, March 17, my life changed. I watched as my smoosher fell apart. I saw him having difficulty getting organized enough to feed Baxter dinner. He put the wrong lid on Bax’s sippy cup and struggled to use a can opener.
****
Wednesday morning, March 15th, when I went upstairs to shower I left Baxter and Mike playing in the family room as I always did.
I took my shower upstairs and when I stepped out to dry off, I heard Baxter. I peeked into the upstairs hallway and there was fifteen month old Baxter, wandering from room to room, having crawled up the entire flight of stairs – alone.
“Smoosher!” I yelled. “SMOOSHER!”
I scooped up Baxter, grasping at my towel with one hand, and stormed downstairs.
Looking down into the family room I saw Michael, sitting upright on the floor, back against the plum sofa, knees up, head hanging in sleep.
Once I woke him up, he apologized profusely.
One thing that freaks me out in retrospect is that I let Michael drive Baxter to daycare during that week. Clearly he could have easily fallen asleep while driving – or gotten lost… or maybe even driven straight to work having left Baxter in the backseat of the car.
But I didn’t know all this at the time. Real Michael was responsible, trustworthy, and brutally honest about his ability or lack of ability to do something. Real Michael would not have been too proud to say, “Smoosher, I’m so tired. I think you should bring Bax to school today.” But what I didn’t realize was that during that week, Mike had no meta-cognition. That is, no way to comment on or judge his own cognitive functioning. So while I assumed that I could ask how he was and he could respond accurately– in reality, he had no idea how he was doing.
Dr. Evans told me that all of these behaviors could very well be symptomatic of issues in the midbrain from the cyst itself. They could also be complications from high sodium resulting form the Diabetes Insipidus. But they could also be signs of an infection. He asked that Michael come in that afternoon (Wed March 15) for another MRI.
The next morning, Thursday, was a replay of the day before. Once again, Mike fell asleep while taking care of Baxter as I showered. When I came down the stairs and saw Bax playing in the kitchen and Mike asleep in the family room, all I could do was cry. Mike woke up to the sound of my crying and immediately realized that it had happened again. All he could do was apologize and hug me.
Friday morning it happened again. As soon as Mike left for work, I called Dr. Evans who immediately suggested that Michael go into the Emergency Room at Jefferson so he could see him.
*******
Friday, March 17th, Michael left work after lunch, drove to the PATCO station in Westmont and took the train to the ER at Jefferson. While there, he and I talked several times throughout the afternoon and evening. In retrospect, I should have just gotten a sitter and gone to join him there. For gosh sakes, he didn’t even know why he was there. I kept reminding him to tell the nurses that Dr. Evans was expecting him – but maybe by the time the nurse came around again, Mike was sleeping. The nurses and doctors in the ER never got the message to call Dr. Evans.
At about 10 pm, Mike called me to say that they had run a lot of blood tests and a CT scan and that everything came back normal.
“I’m a free man, smoosher!” he said in ecstatically.
“You are?” I was doubtful.
“Yeah, baby. All clear. Are you and Bax still in the waiting room?”
We had never been to the waiting room that day.
“No, smoosher,” I said angrily, “We were never there with you today. You went to the ER by yourself.”
“You were here. Oh…it’s late, isn’t it? You had to go home to put Baxter to bed?”
“NO Mike. I was NEVER THERE! Where is the doctor? Where is the nurse? Tell them I need to talk to them right now.”
“Well,” Mike said calmly, “They’re not here right now. It’s just me, hangin’ out on ma’ gurney,” he said jokingly…. Then fell asleep on the phone with me.
I hung up and immediately called our friends Scott and Jen who lived a few blocks away. At each juncture I had no fucking idea what to do. My mind would reel and then I’d land on something that was at least an option. Calling Scott and Jen was exactly what I needed to do.
Scott agreed to get himself to the ER, find Michael, and make sure he was ok and that the doctors understood why he was there in the first place. And, at a purely logistic level, to make sure that, if indeed he was being released, that Mike would get home safely.
When Scott arrived at the ER he found Mike sitting up on a gurney in the hallway talking to one of the ER doctors. Mike greeted him the way he always greeted Scott, “Good Dahk-tah’! What brings you around these parts?”
Scott called me and told me he found Mike in the ER and that he looked great.”
“Scott. He might look great, but he’s totally fucked up. Is there a doctor there?”
I had him put the ER doctor on the phone – the one who was filling out Mike’s discharge papers. The young woman on the other end was professional and understanding enough, but I was livid.
“He’s not ok,” I explained, “He can’t come home. He’s hallucinating. He thinks I’m waiting for him in the waiting room. I was never at the hospital today. Did you guys contact Dr. Evans? Did you do a neuro exam? Did you test his memory and judgment?”
The doctor became annoyed. “No, m’am. We did not. We were not informed of any cognitive difficulties. Mr. Young admitted himself reporting headaches and a fever.”
Oh fuck. Great.
I was getting nowhere. In the meantime, my husband was desperate to come home. I got off the phone with the ER doctor and asked Scott to please drive Michael home.
Around midnight Mike climbed into bed and wrapped his arms around me.
“Hi smoosher.” he said happily. “I hate the hospital. Have I told you that? I’m so glad to be here in my own bed. Thank god I didn’t have to stay. Time Fo’ Bed.”
I rubbed his arms that enveloped me from behind and turned my head to kiss his face. He was already asleep.
*****
Saturday morning, March 18, 2006
I woke up having a coughing attack. I coughed for about two minutes straight, couldn’t catch my breath and then began choking.
Mike didn’t flinch.
After another couple of minutes, I struggled to the bathroom to get some water and returned to bed to hear Michael say,
“You should use my inhaler.”
“What?” I gasped, annoyed because: A) I was choking and could barely get a breath in and Mike didn’t appear to care, and B) Mike never had an inhaler in his life.
“You should use my inhaler,” he repeated with his eyes closed.
“What inhaler, Mike?”
“My blue inhaler.”
“You don’t own an inhaler.”
“Yes, I do,” he said, eyes still closed. “They gave it to me the last time I was in the hospital.”
I had finally stopped coughing.
I turned to him lying beside me in bed, “Why would they have given you an inhaler, Mike?”
“I don’t know. I guess I was having trouble breathing.”
Logical.
“Do you ever remember having trouble breathing?” I asked sarcastically.
“Well, they gave me an inhaler, so, at some point, I must have been having trouble breathing.” His eyes were open now.
“Where is this ‘inhaler’ of yours, Mike?” I was condescending and I didn’t care.
“It’s in my shaving kit, in the closet.”
There was no such thing. I knew it. Why didn’t he know it and why couldn’t he admit that he was all fucked up? I whipped the covers off, jumped out of bed, went into the closet and got his shaving kit. I turned on all the lights in the room and threw the shaving kit on top of Mike’s chest.
“Show me. Show me your inhaler, Mike.” I was starting to cry and wanted to punch something.
Mike squinted in the bright light, sat up in bed, and looked at me like I was insane.
“Smoosher, don’t be mad at me,” He said, hurt.
I gestured towards the bag with my hand, “Show me. Show me your inhaler. Go ahead.”
For no less than five minutes, Mike looked inside his shaving kit. There were three items in it: a travel razor, a travel-sized shampoo and a travel-sized conditioner. Yet, for a full five minutes, Mike looked over and over through the shaving kit for a blue inhaler that didn’t exist.
“Mike!” I yelled. “It’s not there! It’s not there, babe. You don’t own an inhaler. Ok? You never had breathing problems at the hospital and they never gave you a goddamn inhaler.”
He stopped rifling through the leather kit, but continued to look down in his lap. “I guess you’re right,” he said, and placed the kit down on the bed next to him, rolled over, and returned to sleep.
*****
Saturday, March 18th was the day that I took Mike to the ER and wouldn’t let them send him home. By the next day, his sodium was off the charts. He was speaking nonsense and was strapped down to his bed. The scene was so fucking horrifying at the time – but what I didn’t know was how oddly normal it would become… day in and day out for months.
As you may recall, once they removed the catheter from his brain on March 20th (which was infected after all), Mike returned to us. The last week of March he was totally there. We basically had a week long party in his room in the step-down unit of the Gibbon building. Yummy foods, tons of great friends, flowers... Good times. For real.
On March 28th, they tried, in vain, to remove the tumor yet again (through the sinuses). He recovered so quickly from that surgery and fought to be able to come home before the big scheduled craniotomy on April 4rd (the one from which he would never really recover).
So, the weekend of April 1-3, Mike was home. It was unseasonably warm and we sat in the sunshine, ate lunch out, walked around the mall, and ate muffins and drank coffee out in the rocking chairs on the front porch.
Thank god for that weekend.
